Unschooling and how to manage it with health problems
hmbpie
I have been de-schooling Austin (9 years old) since September and have gotten incredibly brilliant advice here since I started. I am here for some more.
Here is the back story and where the fear comes from. Austin had a kidney transplant when he was almost three years old. His transplanted kidney is the only one he has. His original two never formed to be much bigger than a raisin and only had minimal function. They have both since been removed. He has reflux from his bladder into his transplanted kidney. A while back he was having recurrent bladder infections because he was holding. From those infections and the tests that followed we found out that urine was flowing freely from bladder to kidney (reflux). With the reflux into his kidney an infection in his bladder can very well end up in his kidney which could lead to a kidney infection which could lead to rejection. About a year ago we had a procedure called deflux done where the opening from the bladder into the ureter that leads to his kidney was made smaller so that there would be less reflux. There is less but there is still some.
Here is my problem. We moved to San Francisco and therefore got a new nephrologist (kidney doctor). They are very clinical here. At home we had an old, friendly cowboy type who looked at Austin's blood and urine work, gave him a physical exam and told us we were doing a great job. When I talked to him about fears concerning food and drink he would tell me not to worry so much that he looks good inside and out.
Our new nephrologist however has got me in a tizzy. She said his blood pressure is low and that young children who have adult kidneys in their body need higher blood pressure to ensure enough blood is pumping through the kidney. She wanted us to buy a blood pressure monitor and record his blood pressure. So, we bought one and recorded his blood pressure which pissed Austin off.
She also told us that based off of what we told her he is not getting enough fluids. He gets 24 oz. at night through a pump and then during the day he probably only drinks about 12-20 oz. I know this isn't enough. I have always thought he didn't drink enough for someone who has a transplanted kidney but, in Texas we were told his blood and urine look great so keep up the good work. Our new nephrologist tells me that she thinks his blood pressure is low because he is dehydrated.
She was also concerned that he only went pee about three times a day which goes back to not enough fluid which goes back to low blood pressure which goes back to higher risk for rejection.
When I left this panic inducing appointment I started pushing fluid and more bath room breaks. Now we are at a point with Austin where he is refusing to eat, drink, pee or poop. He says if he doesn't drink he won't have to go pee, if he doesn't eat he won't need to go poop. The poop thing is weird to me because I haven't encountered it before but, holding his pee scares the crap out of me because of the reflux into his kidney. The longer he holds the more likely he'll get an infection. If he has to go pee he will let a little out so that it is not uncomfortable into his pants. He used to do this when he was much younger. I think he may be becoming impacted since he is holding his poop and not drinking. He is having small poop accidents which is a new thing I have never dealt with before and honestly am not dealing with well.
We just had an appointment last week with the nephrologist and I told her I can't leave here in a panic again. I told her I know my son and I know what will work best for him and that in Austin, TX he was a perfect transplant patient. He was treated like a rock star when he walked in but, since moving here he is a dehydrated little boy with poor blood pressure who needs to pee more and all these changes need to be made. I told her that as long as his blood, urine and physical exam of his kidney looks good that I will handle the rest.
Now that I wrote all that out it seems silly to even mention teeth brushing. Since we started deschooling with food he has taken to eating a lot of candy and also not brushing his teeth. I am all on board (and so is he) with using mouth rinses and such to get the sugar off his teeth but his teeth are turning so yellow they almost look orange and there is always food built up on them. When he smiles it's hard not to notice.
Right now I feel like "We can unschool this but not that." Or that I let go of too much too soon and need to back track. I am to the point where if he has not had any fluid I bolus him fluid (Use a tube and big syringe to push fluid into his g-tube which is a button in in his stomach where he can take medicine or supplemental nutrition) and if it's been longer than three hours tell him he has to stop and go pee. It sucks. I HATE it! He hates it but, I am at this point where I am not comfortable waiting it out and the consequences that go with that.
I was hoping that while writing this I would have some epiphanies but the only one that comes to mind is to call his doctor in Texas and ask him to look at Austin's progress notes and see what he thinks. We have looked into other nephrologists in the area that specialize in children but the closest one is an hour away and they want blood draws once a month instead of every two months (in Texas it was every three).
Here is the back story and where the fear comes from. Austin had a kidney transplant when he was almost three years old. His transplanted kidney is the only one he has. His original two never formed to be much bigger than a raisin and only had minimal function. They have both since been removed. He has reflux from his bladder into his transplanted kidney. A while back he was having recurrent bladder infections because he was holding. From those infections and the tests that followed we found out that urine was flowing freely from bladder to kidney (reflux). With the reflux into his kidney an infection in his bladder can very well end up in his kidney which could lead to a kidney infection which could lead to rejection. About a year ago we had a procedure called deflux done where the opening from the bladder into the ureter that leads to his kidney was made smaller so that there would be less reflux. There is less but there is still some.
Here is my problem. We moved to San Francisco and therefore got a new nephrologist (kidney doctor). They are very clinical here. At home we had an old, friendly cowboy type who looked at Austin's blood and urine work, gave him a physical exam and told us we were doing a great job. When I talked to him about fears concerning food and drink he would tell me not to worry so much that he looks good inside and out.
Our new nephrologist however has got me in a tizzy. She said his blood pressure is low and that young children who have adult kidneys in their body need higher blood pressure to ensure enough blood is pumping through the kidney. She wanted us to buy a blood pressure monitor and record his blood pressure. So, we bought one and recorded his blood pressure which pissed Austin off.
She also told us that based off of what we told her he is not getting enough fluids. He gets 24 oz. at night through a pump and then during the day he probably only drinks about 12-20 oz. I know this isn't enough. I have always thought he didn't drink enough for someone who has a transplanted kidney but, in Texas we were told his blood and urine look great so keep up the good work. Our new nephrologist tells me that she thinks his blood pressure is low because he is dehydrated.
She was also concerned that he only went pee about three times a day which goes back to not enough fluid which goes back to low blood pressure which goes back to higher risk for rejection.
When I left this panic inducing appointment I started pushing fluid and more bath room breaks. Now we are at a point with Austin where he is refusing to eat, drink, pee or poop. He says if he doesn't drink he won't have to go pee, if he doesn't eat he won't need to go poop. The poop thing is weird to me because I haven't encountered it before but, holding his pee scares the crap out of me because of the reflux into his kidney. The longer he holds the more likely he'll get an infection. If he has to go pee he will let a little out so that it is not uncomfortable into his pants. He used to do this when he was much younger. I think he may be becoming impacted since he is holding his poop and not drinking. He is having small poop accidents which is a new thing I have never dealt with before and honestly am not dealing with well.
We just had an appointment last week with the nephrologist and I told her I can't leave here in a panic again. I told her I know my son and I know what will work best for him and that in Austin, TX he was a perfect transplant patient. He was treated like a rock star when he walked in but, since moving here he is a dehydrated little boy with poor blood pressure who needs to pee more and all these changes need to be made. I told her that as long as his blood, urine and physical exam of his kidney looks good that I will handle the rest.
Now that I wrote all that out it seems silly to even mention teeth brushing. Since we started deschooling with food he has taken to eating a lot of candy and also not brushing his teeth. I am all on board (and so is he) with using mouth rinses and such to get the sugar off his teeth but his teeth are turning so yellow they almost look orange and there is always food built up on them. When he smiles it's hard not to notice.
Right now I feel like "We can unschool this but not that." Or that I let go of too much too soon and need to back track. I am to the point where if he has not had any fluid I bolus him fluid (Use a tube and big syringe to push fluid into his g-tube which is a button in in his stomach where he can take medicine or supplemental nutrition) and if it's been longer than three hours tell him he has to stop and go pee. It sucks. I HATE it! He hates it but, I am at this point where I am not comfortable waiting it out and the consequences that go with that.
I was hoping that while writing this I would have some epiphanies but the only one that comes to mind is to call his doctor in Texas and ask him to look at Austin's progress notes and see what he thinks. We have looked into other nephrologists in the area that specialize in children but the closest one is an hour away and they want blood draws once a month instead of every two months (in Texas it was every three).
wtexans
===his teeth are turning so yellow they almost look orange and there is always food built up on them. When he smiles it's hard not to notice.===
We had a similar situation with my 12yo son, up until his last teeth cleaning four months ago.
I brushed his teeth for him up until age 10-ish, at his request, then he asked to take over and he wasn't very thorough and didn't floss.
During that time, when he would go for teeth cleanings it was a lot of work for the hygienist to get his teeth clean and she would comment on how much build-up there was. He always loved how his teeth felt after having them cleaned, but it was only after the most recent cleaning that he was inspired to brush more thoroughly and to floss regularly. I'm not sure what the inspiration was, but he's sticking with taking better care of his teeth.
Would your son be agreeable to letting you brush and floss his teeth for him?
Could you find a kid-friendly dentist with a hygienist who would clean your son's teeth only as much as he's comfortable with? Up until a couple years ago, we used an older family-practice dentist and the hygienist never pressed beyond the kids' comfort. She said she'd rather them be comfortable and get a less thorough cleaning but be willing to come back, than to freak them out and then they wouldn't come back.
With some big things being out of your son's control, not brushing his teeth may be one area in which he does feel he has some control. It also could be that with bigger health issues going on, teeth may be just a blip on his radar right now.
Glenda
We had a similar situation with my 12yo son, up until his last teeth cleaning four months ago.
I brushed his teeth for him up until age 10-ish, at his request, then he asked to take over and he wasn't very thorough and didn't floss.
During that time, when he would go for teeth cleanings it was a lot of work for the hygienist to get his teeth clean and she would comment on how much build-up there was. He always loved how his teeth felt after having them cleaned, but it was only after the most recent cleaning that he was inspired to brush more thoroughly and to floss regularly. I'm not sure what the inspiration was, but he's sticking with taking better care of his teeth.
Would your son be agreeable to letting you brush and floss his teeth for him?
Could you find a kid-friendly dentist with a hygienist who would clean your son's teeth only as much as he's comfortable with? Up until a couple years ago, we used an older family-practice dentist and the hygienist never pressed beyond the kids' comfort. She said she'd rather them be comfortable and get a less thorough cleaning but be willing to come back, than to freak them out and then they wouldn't come back.
With some big things being out of your son's control, not brushing his teeth may be one area in which he does feel he has some control. It also could be that with bigger health issues going on, teeth may be just a blip on his radar right now.
Glenda
wtexans
===I have always thought he didn't drink enough for someone who has a transplanted kidney but, in Texas we were told his blood and urine look great so keep up the good work. Our new nephrologist tells me that she thinks his blood pressure is low because he is dehydrated.===
The prior doctor told you what was comforting to hear; the new doctor is telling you something different. Yet when you were going to the prior doctor, you were thinking similar to what the new doctor is now telling you, right?
Hearing what we want to hear isn't always the best choice. Sometimes what we need to hear will make us uncomfortable and angry.
I'm not saying your new doctor is right and your old doctor is wrong. But just because a doctor says, "you're doing everything right" doesn't necessarily mean you are . . . and just because a different doctor says, "you should be doing this that and the other" doesn't necessarily mean you should.
What about getting a third and fourth opinion???
What about doing some research on the subject (if you haven't already, that is), so that you are more informed and not necessarily at the mercy of what this doctor or that doctor tells you.
===She wanted us to buy a blood pressure monitor and record his blood pressure. So, we bought one and recorded his blood pressure which pissed Austin off.===
Why did it piss him off?
===Now we are at a point with Austin where he is refusing to eat, drink, pee or poop. He says if he doesn't drink he won't have to go pee, if he doesn't eat he won't need to go poop. The poop thing is weird to me because I haven't encountered it before but, holding his pee scares the crap out of me because of the reflux into his kidney. The longer he holds the more likely he'll get an infection. If he has to go pee he will let a little out so that it is not uncomfortable into his pants. He used to do this when he was much younger. I think he may be becoming impacted since he is holding his poop and not drinking. He is having small poop accidents which is a new thing I have never dealt with before and honestly am not dealing with well.===
It sounds like he's trying to take back some control over his own body.
Give him some personal space, some breathing room. Your concern for his health is understandable and I don't want to minimize that concern at all, but a 9 year old boy who is capable of peeing and pooping without assistance should be given the space to do so.
Does his urine level have to be recorded every single time he pees? If not, let him pee in the shower, or on a tree in the backyard. Take away the clinicalness of it and let it be fun. If it does need to be recorded, think outside the box of ways to do that.
If he wants privacy, give him privacy. Just because he's a child doesn't mean it's not invasive to him to have someone monitoring him the way he's being monitored. Some of that may be necessary, but there must be ways to help the necessary be less invasive. Definitely ask his opinion, ask for his suggestions.
Warm baths can sometimes encourage a child to relax enough to poop. If he like taking baths, he might be comfortable taking some long baths, where you or he rewarms the water as needed. I wouldn't, however, approach it from the stance of "take a warm bath and maybe you'll poop", not with a 9 yr old.
I'm thinking that you'll have to relax considerably, and be consistent about it and patient about it, before he'll quit feeling like he needs to control eating, drinking, peeing, and pooping. Maybe it would help to talk with other parents of kidney-transplant kiddos, to find out how they've stepped away from and/or cope with their fears.
Glenda
The prior doctor told you what was comforting to hear; the new doctor is telling you something different. Yet when you were going to the prior doctor, you were thinking similar to what the new doctor is now telling you, right?
Hearing what we want to hear isn't always the best choice. Sometimes what we need to hear will make us uncomfortable and angry.
I'm not saying your new doctor is right and your old doctor is wrong. But just because a doctor says, "you're doing everything right" doesn't necessarily mean you are . . . and just because a different doctor says, "you should be doing this that and the other" doesn't necessarily mean you should.
What about getting a third and fourth opinion???
What about doing some research on the subject (if you haven't already, that is), so that you are more informed and not necessarily at the mercy of what this doctor or that doctor tells you.
===She wanted us to buy a blood pressure monitor and record his blood pressure. So, we bought one and recorded his blood pressure which pissed Austin off.===
Why did it piss him off?
===Now we are at a point with Austin where he is refusing to eat, drink, pee or poop. He says if he doesn't drink he won't have to go pee, if he doesn't eat he won't need to go poop. The poop thing is weird to me because I haven't encountered it before but, holding his pee scares the crap out of me because of the reflux into his kidney. The longer he holds the more likely he'll get an infection. If he has to go pee he will let a little out so that it is not uncomfortable into his pants. He used to do this when he was much younger. I think he may be becoming impacted since he is holding his poop and not drinking. He is having small poop accidents which is a new thing I have never dealt with before and honestly am not dealing with well.===
It sounds like he's trying to take back some control over his own body.
Give him some personal space, some breathing room. Your concern for his health is understandable and I don't want to minimize that concern at all, but a 9 year old boy who is capable of peeing and pooping without assistance should be given the space to do so.
Does his urine level have to be recorded every single time he pees? If not, let him pee in the shower, or on a tree in the backyard. Take away the clinicalness of it and let it be fun. If it does need to be recorded, think outside the box of ways to do that.
If he wants privacy, give him privacy. Just because he's a child doesn't mean it's not invasive to him to have someone monitoring him the way he's being monitored. Some of that may be necessary, but there must be ways to help the necessary be less invasive. Definitely ask his opinion, ask for his suggestions.
Warm baths can sometimes encourage a child to relax enough to poop. If he like taking baths, he might be comfortable taking some long baths, where you or he rewarms the water as needed. I wouldn't, however, approach it from the stance of "take a warm bath and maybe you'll poop", not with a 9 yr old.
I'm thinking that you'll have to relax considerably, and be consistent about it and patient about it, before he'll quit feeling like he needs to control eating, drinking, peeing, and pooping. Maybe it would help to talk with other parents of kidney-transplant kiddos, to find out how they've stepped away from and/or cope with their fears.
Glenda
Sandra Dodd
-=-She was also concerned that he only went pee about three times a day which goes back to not enough fluid which goes back to low blood pressure which goes back to higher risk for rejection.
-=-When I left this panic inducing appointment I started pushing fluid and more bath room breaks. Now we are at a point with Austin where he is refusing to eat, drink, pee or poop. He says if he doesn't drink he won't have to go pee, if he doesn't eat he won't need to go poop. The poop thing is weird to me because I haven't encountered it before...-=-
"Higher risk for rejection" is a terrible, scary phrase. I would be afraid too.
I've seen the "won't need to poop" thing. I've heard of it in others, but Kirby was that way when he was six or seven. He said one day he wished there had never been such a thing as poop. He held it for days sometimes.
I recommend popsicles. Frozen juice things. Liquidy, water foods. Lettuce. Celery. Apples. Don't talk about it, just have them there. There's tangerine juice at Trader Joe's (you're in California, so I mention it).
Talking to the doctor in Texas is a good idea. You could ask for a consult, offer to pay to talk to him and get him to look at the papers, and he probably won't charge you, but he might be quicker to pay attention, and closer attention, if you approach it as a request for a long-distance appointment, rather than "If you could do us a favor." Maybe.
-=- She wanted us to buy a blood pressure monitor and record his blood pressure. So, we bought one and recorded his blood pressure which pissed Austin off.
-=-
Could you record everyone's blood pressure to keep it from being irritating? Maybe test your own under different circumstances (calm, or after climbing stairs fast or whatever) and see if he's interested in that? Maybe when you talk to the doctor in Texas, ask for some blood pressure readings from the past, and make a chart. I don't know... I'm just fishing for ways to keep it from being a think to be pissed off about.
-=-She also told us that based off of what we told her he is not getting enough fluids. He gets 24 oz. at night through a pump and then during the day he probably only drinks about 12-20 oz. I know this isn't enough. -=-
But she based it off what you told her. And HOW do you "know" it isn't enough? Is his urine sludgy?
Watermelon. Maybe instead of measuring ounces, find things that don't seem at ALL like "drinking enough" but that will help hydrate him.
-=-I started pushing fluid and more bath room breaks.-=-
Interrupting movies and games to tell him to go to the bathroom?
-=-Now that I wrote all that out it seems silly to even mention teeth brushing. Since we started deschooling with food he has taken to eating a lot of candy and also not brushing his teeth. I am all on board (and so is he) with using mouth rinses and such to get the sugar off his teeth but his teeth are turning so yellow they almost look orange and there is always food built up on them. When he smiles it's hard not to notice. -=-
Talk to him about taking better care of his teeth. Maybe you could say that never is as bad as "have to." That you're not going to tell him exactly when and how to brush his teeth, but sometime, somewhere, he needs to do that more. Kirby, when he was a teen, started keeping a toothbrush in the shower, and would brush his teeth in there. I don't think he was using toothpaste, just the shower water and the steam. He brushed otherwise other times, but the shower seemed to be the primary, as far as I could tell.
Sandra
[Non-text portions of this message have been removed]
-=-When I left this panic inducing appointment I started pushing fluid and more bath room breaks. Now we are at a point with Austin where he is refusing to eat, drink, pee or poop. He says if he doesn't drink he won't have to go pee, if he doesn't eat he won't need to go poop. The poop thing is weird to me because I haven't encountered it before...-=-
"Higher risk for rejection" is a terrible, scary phrase. I would be afraid too.
I've seen the "won't need to poop" thing. I've heard of it in others, but Kirby was that way when he was six or seven. He said one day he wished there had never been such a thing as poop. He held it for days sometimes.
I recommend popsicles. Frozen juice things. Liquidy, water foods. Lettuce. Celery. Apples. Don't talk about it, just have them there. There's tangerine juice at Trader Joe's (you're in California, so I mention it).
Talking to the doctor in Texas is a good idea. You could ask for a consult, offer to pay to talk to him and get him to look at the papers, and he probably won't charge you, but he might be quicker to pay attention, and closer attention, if you approach it as a request for a long-distance appointment, rather than "If you could do us a favor." Maybe.
-=- She wanted us to buy a blood pressure monitor and record his blood pressure. So, we bought one and recorded his blood pressure which pissed Austin off.
-=-
Could you record everyone's blood pressure to keep it from being irritating? Maybe test your own under different circumstances (calm, or after climbing stairs fast or whatever) and see if he's interested in that? Maybe when you talk to the doctor in Texas, ask for some blood pressure readings from the past, and make a chart. I don't know... I'm just fishing for ways to keep it from being a think to be pissed off about.
-=-She also told us that based off of what we told her he is not getting enough fluids. He gets 24 oz. at night through a pump and then during the day he probably only drinks about 12-20 oz. I know this isn't enough. -=-
But she based it off what you told her. And HOW do you "know" it isn't enough? Is his urine sludgy?
Watermelon. Maybe instead of measuring ounces, find things that don't seem at ALL like "drinking enough" but that will help hydrate him.
-=-I started pushing fluid and more bath room breaks.-=-
Interrupting movies and games to tell him to go to the bathroom?
-=-Now that I wrote all that out it seems silly to even mention teeth brushing. Since we started deschooling with food he has taken to eating a lot of candy and also not brushing his teeth. I am all on board (and so is he) with using mouth rinses and such to get the sugar off his teeth but his teeth are turning so yellow they almost look orange and there is always food built up on them. When he smiles it's hard not to notice. -=-
Talk to him about taking better care of his teeth. Maybe you could say that never is as bad as "have to." That you're not going to tell him exactly when and how to brush his teeth, but sometime, somewhere, he needs to do that more. Kirby, when he was a teen, started keeping a toothbrush in the shower, and would brush his teeth in there. I don't think he was using toothpaste, just the shower water and the steam. He brushed otherwise other times, but the shower seemed to be the primary, as far as I could tell.
Sandra
[Non-text portions of this message have been removed]
Lisa Lanzkron-Tamarazo
Having been diagnosed with a chronic illness as a child, I can relate to
your son's anger. I, too, did exactly what I knew I shouldn't be doing. I
was fortunate that I was never in a situation where it became
life-threatening. I just wanted to be a carefree kid and that was not
really possible. Have you thought about having your son meet alone with the
doctor? Maybe giving him the responsibility to listen to the doctor
himself, rather than have you be the interpreter of what he says, will help
him feel some sense of control. I know that my mother was so concerned for
me, that I sometimes thought all she saw was a sick little kid---not me as a
person. She didn't mean to be that way. She loves me and it was very hard
for her to see her perfect baby sick. And I often felt that she was
speaking for me before I had a chance to speak for myself.
If your son can keep a log of what he drinks and when he pees and shows it
only to the doctor, that may help. That way he is able to remove your
emotions and concerns from the equation.
Lisa
your son's anger. I, too, did exactly what I knew I shouldn't be doing. I
was fortunate that I was never in a situation where it became
life-threatening. I just wanted to be a carefree kid and that was not
really possible. Have you thought about having your son meet alone with the
doctor? Maybe giving him the responsibility to listen to the doctor
himself, rather than have you be the interpreter of what he says, will help
him feel some sense of control. I know that my mother was so concerned for
me, that I sometimes thought all she saw was a sick little kid---not me as a
person. She didn't mean to be that way. She loves me and it was very hard
for her to see her perfect baby sick. And I often felt that she was
speaking for me before I had a chance to speak for myself.
If your son can keep a log of what he drinks and when he pees and shows it
only to the doctor, that may help. That way he is able to remove your
emotions and concerns from the equation.
Lisa
On Mon, Jan 31, 2011 at 4:30 AM, wtexans <wtexans@...> wrote:
>
>
>
>
> ===I have always thought he didn't drink enough for someone who has a
> transplanted kidney but, in Texas we were told his blood and urine look
> great so keep up the good work. Our new nephrologist tells me that she
> thinks his blood pressure is low because he is dehydrated.===
>
> The prior doctor told you what was comforting to hear; the new doctor is
> telling you something different. Yet when you were going to the prior
> doctor, you were thinking similar to what the new doctor is now telling you,
> right?
>
> Hearing what we want to hear isn't always the best choice. Sometimes what
> we need to hear will make us uncomfortable and angry.
>
> I'm not saying your new doctor is right and your old doctor is wrong. But
> just because a doctor says, "you're doing everything right" doesn't
> necessarily mean you are . . . and just because a different doctor says,
> "you should be doing this that and the other" doesn't necessarily mean you
> should.
>
> What about getting a third and fourth opinion???
>
> What about doing some research on the subject (if you haven't already, that
> is), so that you are more informed and not necessarily at the mercy of what
> this doctor or that doctor tells you.
>
> ===She wanted us to buy a blood pressure monitor and record his blood
> pressure. So, we bought one and recorded his blood pressure which pissed
> Austin off.===
>
> Why did it piss him off?
>
> ===Now we are at a point with Austin where he is refusing to eat, drink,
> pee or poop. He says if he doesn't drink he won't have to go pee, if he
> doesn't eat he won't need to go poop. The poop thing is weird to me because
> I haven't encountered it before but, holding his pee scares the crap out of
> me because of the reflux into his kidney. The longer he holds the more
> likely he'll get an infection. If he has to go pee he will let a little out
> so that it is not uncomfortable into his pants. He used to do this when he
> was much younger. I think he may be becoming impacted since he is holding
> his poop and not drinking. He is having small poop accidents which is a new
> thing I have never dealt with before and honestly am not dealing with
> well.===
>
> It sounds like he's trying to take back some control over his own body.
>
> Give him some personal space, some breathing room. Your concern for his
> health is understandable and I don't want to minimize that concern at all,
> but a 9 year old boy who is capable of peeing and pooping without assistance
> should be given the space to do so.
>
> Does his urine level have to be recorded every single time he pees? If not,
> let him pee in the shower, or on a tree in the backyard. Take away the
> clinicalness of it and let it be fun. If it does need to be recorded, think
> outside the box of ways to do that.
>
> If he wants privacy, give him privacy. Just because he's a child doesn't
> mean it's not invasive to him to have someone monitoring him the way he's
> being monitored. Some of that may be necessary, but there must be ways to
> help the necessary be less invasive. Definitely ask his opinion, ask for his
> suggestions.
>
> Warm baths can sometimes encourage a child to relax enough to poop. If he
> like taking baths, he might be comfortable taking some long baths, where you
> or he rewarms the water as needed. I wouldn't, however, approach it from the
> stance of "take a warm bath and maybe you'll poop", not with a 9 yr old.
>
> I'm thinking that you'll have to relax considerably, and be consistent
> about it and patient about it, before he'll quit feeling like he needs to
> control eating, drinking, peeing, and pooping. Maybe it would help to talk
> with other parents of kidney-transplant kiddos, to find out how they've
> stepped away from and/or cope with their fears.
>
> Glenda
>
>
>
[Non-text portions of this message have been removed]
Joyce Fetteroll
On Jan 31, 2011, at 8:36 AM, Lisa Lanzkron-Tamarazo wrote:
child's advocate to pull as much information from the doctor as you
can about options. I think too often doctors are treated like Moses
who hand down the final word of Hippocrates on the matter ;-)
How does the system work? How does the transplant change the normal
function? What does it need and what gets in the way of it functioning
well? (Undoubtedly there are videos on line about kidney's. But do it
in an information seeking, empowering way, not as a way to convince
him the doctor's right. Let him know you want to look into the options
together and this will help the two of you ask better questions.)
Ask her what's the likelihood of this really-bad-thing happening?
What's she basing that on?
If he doesn't do what she suggests, what will happen?
What are the alternatives to what she's suggesting? Why aren't those
her first recommendations?
Information is empowering. If he has more questions that he thinks of
later, call and ask.
If he's having problems with a recommendation, let the doctor know and
ask for alternatives.
Joyce
[Non-text portions of this message have been removed]
> Maybe giving him the responsibility to listen to the doctorOther mothers in similar situations have described how to be the
> himself, rather than have you be the interpreter of what he says,
> will help
> him feel some sense of control.
child's advocate to pull as much information from the doctor as you
can about options. I think too often doctors are treated like Moses
who hand down the final word of Hippocrates on the matter ;-)
How does the system work? How does the transplant change the normal
function? What does it need and what gets in the way of it functioning
well? (Undoubtedly there are videos on line about kidney's. But do it
in an information seeking, empowering way, not as a way to convince
him the doctor's right. Let him know you want to look into the options
together and this will help the two of you ask better questions.)
Ask her what's the likelihood of this really-bad-thing happening?
What's she basing that on?
If he doesn't do what she suggests, what will happen?
What are the alternatives to what she's suggesting? Why aren't those
her first recommendations?
Information is empowering. If he has more questions that he thinks of
later, call and ask.
If he's having problems with a recommendation, let the doctor know and
ask for alternatives.
Joyce
[Non-text portions of this message have been removed]
MMmommy
I wanted to open my response with a huge shout out to you for all the
efforts you have put in to listening to Austin, deschooling, shedding
your own fears, having the courage to ask for help and for challenging
the information you receive.
Firstly, it is worth noting that Austin has made it six years with out
any issues with his transplant. Which means he is healthy. I would
imagine it is so easy to get consumed by the what ifs and forget to see
what is.
I am not a parent with a child who has a chronic illness .. I do know
that as a parent when my children get sick I often switch gears and
become a completely different parent (I wrote a bit about that here
<http://imnotgoingtoholdbacknomore.blogspot.com/2010/12/in-sickness-and-\
in-health.html> ) I wonder if it would be useful to remind yourself
that Austin needs you to be the mom he needs ALL the time, with our
without body in or out put.
Because I have the pleasure of knowing Austin I can see his is a healthy
young man who is determined to embrace the changes your family is
making. And he is determined to keep you accountable. Have you told him
from a loving place that you are generally worried about his health?
Have you told him that you really do trust him to manage the in and out
puts of his body? Perhaps you could challenge yourself to spend five
days without mentioning his urine or bowel movements see what happens on
its own.
It is hard as the parent to watch with all the worry we bring to a
situation. However, Austin does not have any of that. He is just a kid
who wants to be in the world in a way that he has some control over. He
is enjoying this new freedom to its fullest right now and he wants to be
happy and have fun. Holding on to your urine and bowels will stop being
comfortable and I would imagine will lead him to look for some relief .
When he asks for help offer it up with an open heart (and try not to
rush in with any of the fear or I knew this would happen kind of stuff
that I know I takes me HUGE efforts to hold back from my own children).
On the topic of hydration I wonder if he would enjoy making up and
testing some of his own recipes .. a few quick searches on line and you
could together take on making homemade sodas, smoothies, floats,
milkshakes to mention a few .. Oh and slushes .. and snow cones .. and
and and ..
This is offered from a parent who children's health concerns are no
where near as deep as this .. though I have seen them manage their own
dietary needs to the point of noticing those foods and situations that
make them not feel good and those that do. It is tough to find a doctor
who knows Austin as well as you do so perhaps believing Austin and you
are the experts and the doctors are the outside resources might be
helpful.
I think the suggestions offered so far of doing your own research
together will also help to debunk some of the ideas and to empower you
both to really understand the situation and bring that info. with you to
each of your appointments.
Shannon
efforts you have put in to listening to Austin, deschooling, shedding
your own fears, having the courage to ask for help and for challenging
the information you receive.
Firstly, it is worth noting that Austin has made it six years with out
any issues with his transplant. Which means he is healthy. I would
imagine it is so easy to get consumed by the what ifs and forget to see
what is.
I am not a parent with a child who has a chronic illness .. I do know
that as a parent when my children get sick I often switch gears and
become a completely different parent (I wrote a bit about that here
<http://imnotgoingtoholdbacknomore.blogspot.com/2010/12/in-sickness-and-\
in-health.html> ) I wonder if it would be useful to remind yourself
that Austin needs you to be the mom he needs ALL the time, with our
without body in or out put.
Because I have the pleasure of knowing Austin I can see his is a healthy
young man who is determined to embrace the changes your family is
making. And he is determined to keep you accountable. Have you told him
from a loving place that you are generally worried about his health?
Have you told him that you really do trust him to manage the in and out
puts of his body? Perhaps you could challenge yourself to spend five
days without mentioning his urine or bowel movements see what happens on
its own.
It is hard as the parent to watch with all the worry we bring to a
situation. However, Austin does not have any of that. He is just a kid
who wants to be in the world in a way that he has some control over. He
is enjoying this new freedom to its fullest right now and he wants to be
happy and have fun. Holding on to your urine and bowels will stop being
comfortable and I would imagine will lead him to look for some relief .
When he asks for help offer it up with an open heart (and try not to
rush in with any of the fear or I knew this would happen kind of stuff
that I know I takes me HUGE efforts to hold back from my own children).
On the topic of hydration I wonder if he would enjoy making up and
testing some of his own recipes .. a few quick searches on line and you
could together take on making homemade sodas, smoothies, floats,
milkshakes to mention a few .. Oh and slushes .. and snow cones .. and
and and ..
This is offered from a parent who children's health concerns are no
where near as deep as this .. though I have seen them manage their own
dietary needs to the point of noticing those foods and situations that
make them not feel good and those that do. It is tough to find a doctor
who knows Austin as well as you do so perhaps believing Austin and you
are the experts and the doctors are the outside resources might be
helpful.
I think the suggestions offered so far of doing your own research
together will also help to debunk some of the ideas and to empower you
both to really understand the situation and bring that info. with you to
each of your appointments.
Shannon
--- In [email protected], "hmbpie" <heatherpie@...> wrote:
>
> I have been de-schooling Austin (9 years old) since September and have
gotten incredibly brilliant advice here since I started. I am here for
some more.
>
>
> Here is the back story and where the fear comes from. Austin had a
kidney transplant when he was almost three years old. His transplanted
kidney is the only one he has. His original two never formed to be much
bigger than a raisin and only had minimal function. They have both
since been removed. He has reflux from his bladder into his
transplanted kidney. A while back he was having recurrent bladder
infections because he was holding. From those infections and the tests
that followed we found out that urine was flowing freely from bladder to
kidney (reflux). With the reflux into his kidney an infection in his
bladder can very well end up in his kidney which could lead to a kidney
infection which could lead to rejection. About a year ago we had a
procedure called deflux done where the opening from the bladder into the
ureter that leads to his kidney was made smaller so that there would be
less reflux. There is less but there is still some.
>
>
> Here is my problem. We moved to San Francisco and therefore got a new
nephrologist (kidney doctor). They are very clinical here. At home we
had an old, friendly cowboy type who looked at Austin's blood and urine
work, gave him a physical exam and told us we were doing a great job.
When I talked to him about fears concerning food and drink he would tell
me not to worry so much that he looks good inside and out.
>
>
> Our new nephrologist however has got me in a tizzy. She said his
blood pressure is low and that young children who have adult kidneys in
their body need higher blood pressure to ensure enough blood is pumping
through the kidney. She wanted us to buy a blood pressure monitor and
record his blood pressure. So, we bought one and recorded his blood
pressure which pissed Austin off.
>
>
> She also told us that based off of what we told her he is not getting
enough fluids. He gets 24 oz. at night through a pump and then during
the day he probably only drinks about 12-20 oz. I know this isn't
enough. I have always thought he didn't drink enough for someone who
has a transplanted kidney but, in Texas we were told his blood and urine
look great so keep up the good work. Our new nephrologist tells me that
she thinks his blood pressure is low because he is dehydrated.
>
>
> She was also concerned that he only went pee about three times a day
which goes back to not enough fluid which goes back to low blood
pressure which goes back to higher risk for rejection.
>
>
>
> When I left this panic inducing appointment I started pushing fluid
and more bath room breaks. Now we are at a point with Austin where he
is refusing to eat, drink, pee or poop. He says if he doesn't drink he
won't have to go pee, if he doesn't eat he won't need to go poop. The
poop thing is weird to me because I haven't encountered it before but,
holding his pee scares the crap out of me because of the reflux into his
kidney. The longer he holds the more likely he'll get an infection. If
he has to go pee he will let a little out so that it is not
uncomfortable into his pants. He used to do this when he was much
younger. I think he may be becoming impacted since he is holding his
poop and not drinking. He is having small poop accidents which is a new
thing I have never dealt with before and honestly am not dealing with
well.
>
>
> We just had an appointment last week with the nephrologist and I told
her I can't leave here in a panic again. I told her I know my son and I
know what will work best for him and that in Austin, TX he was a perfect
transplant patient. He was treated like a rock star when he walked in
but, since moving here he is a dehydrated little boy with poor blood
pressure who needs to pee more and all these changes need to be made. I
told her that as long as his blood, urine and physical exam of his
kidney looks good that I will handle the rest.
>
>
> Now that I wrote all that out it seems silly to even mention teeth
brushing. Since we started deschooling with food he has taken to eating
a lot of candy and also not brushing his teeth. I am all on board (and
so is he) with using mouth rinses and such to get the sugar off his
teeth but his teeth are turning so yellow they almost look orange and
there is always food built up on them. When he smiles it's hard not to
notice.
>
>
> Right now I feel like "We can unschool this but not that." Or that I
let go of too much too soon and need to back track. I am to the point
where if he has not had any fluid I bolus him fluid (Use a tube and big
syringe to push fluid into his g-tube which is a button in in his
stomach where he can take medicine or supplemental nutrition) and if
it's been longer than three hours tell him he has to stop and go pee.
It sucks. I HATE it! He hates it but, I am at this point where I am not
comfortable waiting it out and the consequences that go with that.
>
>
> I was hoping that while writing this I would have some epiphanies but
the only one that comes to mind is to call his doctor in Texas and ask
him to look at Austin's progress notes and see what he thinks. We have
looked into other nephrologists in the area that specialize in children
but the closest one is an hour away and they want blood draws once a
month instead of every two months (in Texas it was every three).
>
[Non-text portions of this message have been removed]
k
>>>I think the suggestions offered so far of doing your own researchtogether will also help to debunk some of the ideas and to empower you
both to really understand the situation and bring that info. with you to
each of your appointments.<<<
Doctors have some options for knowing about health, and much of that
knowledge is available to the general public through medical websites,
knowledge that might not come up or be mentioned during an
appointment. If a patient asks, the doctor can take time to explain
more. I've definitely been to doctors who hate that! Others love
seeing a patient who is interested in their own health.
You can get 2nd, 3rd, etc opinions. And you can also schedule to meet
doctors apart from appointments to find one or two who might be more
approachable than the one you're currently seeing. If that means an
hour drive, maybe ask that doctor about labs close to you for between
times and not have to drive all that way just to get tests done. If
the numbers look good, you could see the doctor at other intervals. It
could be worth the question. Also some doctors look for feedback to
decide if they could offer a day or two per week at other locations.
Or they might have a colleague nearer by to refer, who isn't taking
new patients but can take referrals.
~Katherine
hmbpie
Thank you everyone for replying to this topic. I know it's a tough one. I want to answer some questions that were asked that might clarify a little more where we are at which might help me get to a place of relaxing. I really can't thank you guys enough for taking the time to help me with something that feels so consuming right now.
=The prior doctor told you what was comforting to hear; the new doctor is telling you something different.=
That is what I thought when we first moved here. My initial thought was "Were we getting inadequate care in Texas? Are they behind the times? Should I have known all these things?" I stepped back from that because Dr. Berry, our doctor in Texas, has seen Austin since the day he was born and has helped us this far with support, advice and options.
When I was looking for a new nephrologist here and calling around the opinion I came to is there are a lot of opinions when it comes to transplant care and not one right way to do it. For instance in Texas once you are a year out with no complications you only need blood draws and doctor's visits every three months. When we moved here the nephrologist we choose insisted on every two months. There was no budging from that. So, I called the doctor that is an hour away and they insisted on blood draws every month but were willing to go every couple months on the doctor's visit. At the time Austin wanted the doctor with the least amount of blood drawls. Actually he wants a doctor who will let him do what he did in Texas but none so far are willing to go out as far as three months. To me it seems each doctor has a way they like to do things that they insist is the right way but how can that be when each doctor has a different way to do things? It's maddening. Maybe I should revisit the idea of trying another doctor even if it means more blood draws with Austin.
=What about doing some research on the subject=
The internet is a scary place when it comes to medical research on your child, but I have. It's been a while. I stopped because it just created more fear. I never found anything that didn't raise my fear or that was in terms I could understand. Or maybe I did find useful information but after sifting through all the stuff that scared the crap out of me I didn't get much out of the stuff that would help me. It's worth a shot again.
=How does the system work? How does the transplant change the normal function? What does it need and what gets in the way of it functioning well? (Undoubtedly there are videos on line about kidneys. But do it in an information seeking, empowering way, not as a way to convince him the doctor's right. Let him know you want to look into the options together and this will help the two of you ask better questions.)=
In an adult once the kidney is transplanted it works just like any other kidney. You need to take meds to keep the immune system down so it doesn't catch on that there is an intruder in the mix. In a child it needs more fluid to keep the blood pressure up to keep more blood pushing through it. If it doesn't well then, it just doesn't last as long. A transplanted kidney can last from 10-20 years depending on how well you care for it. If it weren't for the reflux I don't think I would have this fear of infection. A bladder infection would be contained to the bladder. In Austin it's not. The urine moves back into his kidney. He's on a low dose antibiotic right now to help prevent that from happening. The fear of it happening for me is still there. He had a lot of them back to back which is how we found out about the reflux.
I do really love the idea of finding a video on how the kidney works for me though. That seems like something I can look into without creating more fear. If Austin is interested I will show him. He is really resentful right now about having this thing about him that is different. He was talking about it today when we went to get his blood drawn with me and the lady sitting next to me laughed and rolled her eyes. Like he was being ridiculous. I wanted to punch her in the face.
=I've seen the "won't need to poop" thing.=
Oh thank God! That makes me feel so much better! Seriously :-)
=I recommend popsicles. Frozen juice things. Liquidy, water foods. Lettuce. Celery. Apples.=
We are still deschooling food and unfortunately I think I have set us back in my panic mode. He really is only interested in things like chips, cheese and snickers. We have been asking him if he minds taking a bolus (http://www.ehow.com/about_5751859_bolus-feeding-guidelines.html) and if he says sure then we give him some fluids that way. Mostly apple juice and prune juice to try to help things move along down there. (I just got up and gave him a popsicle though.)
Austin quit breastfeeding when he was 9 months old. When we started bottle feeding we found out he was only taking in about 3-5 oz. total for the day. At 1 year old we placed a G-tube (http://www.wisegeek.com/what-is-a-gastric-feeding-tube.htm) for nutrition. His kidneys were failing and his body was toxic. He was strictly fed with G-tube only until he had his transplant when he was almost three. From the time he was born until he was four maybe he vomited a lot because of the enteral feedings. His body could only process small amounts of food at a time and what we found out later was that three onces would go in and his body was only processing one before the next three started to go in and at some point there just wasn't any more room for more food and he would vomit. Once he had the transplant we started on feeding therapy since he missed that time when kids naturally learn to eat. I really wish we would have skipped over this whole part and just figured it out on our own. It could have been a really fun time trying new foods together in the safety of our home because feeding therapy has a lot to do with control. And as he got older the more control was taken away from him. He has HUGE issues with food. Understandably. So, although I put other stuff on his monkey platter like fruits and such he doesn't eat them. They are still scary and crackers and cheese are safe. I never pushed a cracker on him but an apple? That is a different story. He'll ask for them sometimes which is awesome but won't actually eat them.
The deschooling phase does make some of this harder. He has felt what autonomy feels like and he wants more! He loves it! Right now I've made everything a big, jumbled up mess by back tracking and panicking. I want to give him that sense of autonomy back but feel so stuck in fear.
=Talking to the doctor in Texas is a good idea=
I called him yesterday and am waiting for a phone call back. I was also offered by a fellow unschooler in the area who is a doctor to find out if she can find a children's nephrologist to talk to. I would love to change doctors here but I am afraid we wouldn't be covered. I will call my insurance though and see how far out of the city I can go and still be covered.
Sandra replied =But she based it off what you told her. And HOW do you "know" it isn't enough? Is his urine sludgy?= to a statement about Austin not getting enough fluid, and the doctor saying he was dehydrated.
We know from his urine sample that day he was dehydrated. She said it was concentrated which meant he was dehydrated. I guess I can start paying closer attention to what it looks like at home (he doesn't flush his pee so I wouldn't even need to say anything about it which is a plus).
=Because I have the pleasure of knowing Austin I can see his is a healthy young man who is determined to embrace the changes your family is making. And he is determined to keep you accountable.=
The other day when we were over at her (Shannon)house and Austin raved about what an awesome mom I have become and how he used to want to flush me down the toilet but now doesn't want to do that. :-)
= Have you told him from a loving place that you are generally worried about his health?=
I have told him about my concerns outside of when my concerns are really high. Lately he listens to me and then walks out of the room without saying a word. I don't know if that is a good thing or a bad thing. But he's glaring at me so I am going to say it's more bad than good. The last conversation we had he said "I hate that I have to pee and poop because of my kidney." I said that those things are things ALL humans have to do whether they have a transplanted kidney or not." Then I went into input and output. Humans need three things to live. Food, water and air. We breathe in oxygen and breathe out carbon dioxide. We take in fluid and process out urine. We take in food and process out poop. Too much?
I remember a couple months ago I asked Austin, "How can I love you better?" Without hesitation he answered "Get rid of your fear!" I need to stick that up somewhere. I know my worry only brings out resistance and erodes trust. It makes him feel like I think he is too stupid to know when to pee, eat, poop or drink.
=Perhaps you could challenge yourself to spend five days without mentioning his urine or bowel movements see what happens on its own.=
I know through conversations here (and at Shannon's house and with the unschoolers here) I have worked through fear. Right now on the question of can I challenge myself to five days? I would say maybe. Maybe a smaller goal though. Maybe one day.
Well, like I just said I am a bundle of nerves and fear. We were in this great place and now Austin is just pissed at me. And I'm pissed at myself because I just can't seem to shake this feeling. I've never admitted this to a group this size, but I think I am about to start my period and I think that is why this feels so monstrous and consuming. Actually after writing this I feel a little better. You guys gave me some good stuff and I'm going to try it. Thank you.
=The prior doctor told you what was comforting to hear; the new doctor is telling you something different.=
That is what I thought when we first moved here. My initial thought was "Were we getting inadequate care in Texas? Are they behind the times? Should I have known all these things?" I stepped back from that because Dr. Berry, our doctor in Texas, has seen Austin since the day he was born and has helped us this far with support, advice and options.
When I was looking for a new nephrologist here and calling around the opinion I came to is there are a lot of opinions when it comes to transplant care and not one right way to do it. For instance in Texas once you are a year out with no complications you only need blood draws and doctor's visits every three months. When we moved here the nephrologist we choose insisted on every two months. There was no budging from that. So, I called the doctor that is an hour away and they insisted on blood draws every month but were willing to go every couple months on the doctor's visit. At the time Austin wanted the doctor with the least amount of blood drawls. Actually he wants a doctor who will let him do what he did in Texas but none so far are willing to go out as far as three months. To me it seems each doctor has a way they like to do things that they insist is the right way but how can that be when each doctor has a different way to do things? It's maddening. Maybe I should revisit the idea of trying another doctor even if it means more blood draws with Austin.
=What about doing some research on the subject=
The internet is a scary place when it comes to medical research on your child, but I have. It's been a while. I stopped because it just created more fear. I never found anything that didn't raise my fear or that was in terms I could understand. Or maybe I did find useful information but after sifting through all the stuff that scared the crap out of me I didn't get much out of the stuff that would help me. It's worth a shot again.
=How does the system work? How does the transplant change the normal function? What does it need and what gets in the way of it functioning well? (Undoubtedly there are videos on line about kidneys. But do it in an information seeking, empowering way, not as a way to convince him the doctor's right. Let him know you want to look into the options together and this will help the two of you ask better questions.)=
In an adult once the kidney is transplanted it works just like any other kidney. You need to take meds to keep the immune system down so it doesn't catch on that there is an intruder in the mix. In a child it needs more fluid to keep the blood pressure up to keep more blood pushing through it. If it doesn't well then, it just doesn't last as long. A transplanted kidney can last from 10-20 years depending on how well you care for it. If it weren't for the reflux I don't think I would have this fear of infection. A bladder infection would be contained to the bladder. In Austin it's not. The urine moves back into his kidney. He's on a low dose antibiotic right now to help prevent that from happening. The fear of it happening for me is still there. He had a lot of them back to back which is how we found out about the reflux.
I do really love the idea of finding a video on how the kidney works for me though. That seems like something I can look into without creating more fear. If Austin is interested I will show him. He is really resentful right now about having this thing about him that is different. He was talking about it today when we went to get his blood drawn with me and the lady sitting next to me laughed and rolled her eyes. Like he was being ridiculous. I wanted to punch her in the face.
=I've seen the "won't need to poop" thing.=
Oh thank God! That makes me feel so much better! Seriously :-)
=I recommend popsicles. Frozen juice things. Liquidy, water foods. Lettuce. Celery. Apples.=
We are still deschooling food and unfortunately I think I have set us back in my panic mode. He really is only interested in things like chips, cheese and snickers. We have been asking him if he minds taking a bolus (http://www.ehow.com/about_5751859_bolus-feeding-guidelines.html) and if he says sure then we give him some fluids that way. Mostly apple juice and prune juice to try to help things move along down there. (I just got up and gave him a popsicle though.)
Austin quit breastfeeding when he was 9 months old. When we started bottle feeding we found out he was only taking in about 3-5 oz. total for the day. At 1 year old we placed a G-tube (http://www.wisegeek.com/what-is-a-gastric-feeding-tube.htm) for nutrition. His kidneys were failing and his body was toxic. He was strictly fed with G-tube only until he had his transplant when he was almost three. From the time he was born until he was four maybe he vomited a lot because of the enteral feedings. His body could only process small amounts of food at a time and what we found out later was that three onces would go in and his body was only processing one before the next three started to go in and at some point there just wasn't any more room for more food and he would vomit. Once he had the transplant we started on feeding therapy since he missed that time when kids naturally learn to eat. I really wish we would have skipped over this whole part and just figured it out on our own. It could have been a really fun time trying new foods together in the safety of our home because feeding therapy has a lot to do with control. And as he got older the more control was taken away from him. He has HUGE issues with food. Understandably. So, although I put other stuff on his monkey platter like fruits and such he doesn't eat them. They are still scary and crackers and cheese are safe. I never pushed a cracker on him but an apple? That is a different story. He'll ask for them sometimes which is awesome but won't actually eat them.
The deschooling phase does make some of this harder. He has felt what autonomy feels like and he wants more! He loves it! Right now I've made everything a big, jumbled up mess by back tracking and panicking. I want to give him that sense of autonomy back but feel so stuck in fear.
=Talking to the doctor in Texas is a good idea=
I called him yesterday and am waiting for a phone call back. I was also offered by a fellow unschooler in the area who is a doctor to find out if she can find a children's nephrologist to talk to. I would love to change doctors here but I am afraid we wouldn't be covered. I will call my insurance though and see how far out of the city I can go and still be covered.
Sandra replied =But she based it off what you told her. And HOW do you "know" it isn't enough? Is his urine sludgy?= to a statement about Austin not getting enough fluid, and the doctor saying he was dehydrated.
We know from his urine sample that day he was dehydrated. She said it was concentrated which meant he was dehydrated. I guess I can start paying closer attention to what it looks like at home (he doesn't flush his pee so I wouldn't even need to say anything about it which is a plus).
=Because I have the pleasure of knowing Austin I can see his is a healthy young man who is determined to embrace the changes your family is making. And he is determined to keep you accountable.=
The other day when we were over at her (Shannon)house and Austin raved about what an awesome mom I have become and how he used to want to flush me down the toilet but now doesn't want to do that. :-)
= Have you told him from a loving place that you are generally worried about his health?=
I have told him about my concerns outside of when my concerns are really high. Lately he listens to me and then walks out of the room without saying a word. I don't know if that is a good thing or a bad thing. But he's glaring at me so I am going to say it's more bad than good. The last conversation we had he said "I hate that I have to pee and poop because of my kidney." I said that those things are things ALL humans have to do whether they have a transplanted kidney or not." Then I went into input and output. Humans need three things to live. Food, water and air. We breathe in oxygen and breathe out carbon dioxide. We take in fluid and process out urine. We take in food and process out poop. Too much?
I remember a couple months ago I asked Austin, "How can I love you better?" Without hesitation he answered "Get rid of your fear!" I need to stick that up somewhere. I know my worry only brings out resistance and erodes trust. It makes him feel like I think he is too stupid to know when to pee, eat, poop or drink.
=Perhaps you could challenge yourself to spend five days without mentioning his urine or bowel movements see what happens on its own.=
I know through conversations here (and at Shannon's house and with the unschoolers here) I have worked through fear. Right now on the question of can I challenge myself to five days? I would say maybe. Maybe a smaller goal though. Maybe one day.
Well, like I just said I am a bundle of nerves and fear. We were in this great place and now Austin is just pissed at me. And I'm pissed at myself because I just can't seem to shake this feeling. I've never admitted this to a group this size, but I think I am about to start my period and I think that is why this feels so monstrous and consuming. Actually after writing this I feel a little better. You guys gave me some good stuff and I'm going to try it. Thank you.
Alex
> She also told us that based off of what we told her he is not getting enough fluids. He gets 24 oz. at night through a pump and then during the day he probably only drinks about 12-20 oz. I know this isn't enough.I've been chronically dehydrated for most of my adult life. It's the weirdest thing. My last doctor told me to eat more rice and no dehydrated/dried foods. Not suggesting that you withhold them of course. I try to do a lot of soup. Noodle soups are pretty comforting. Lately I read a book about Ayurveda. I'm not 100% if I'm buying it all yet, though it listed a lot of "healthy foods" my type shouldn't eat which really always made me feel mysteriously icky. The type I tested as being supposedly doesn't do well with cold. I figured out that I haven't been drinking enough mostly because I just don't like cold things. And most beverages here in the US are either served cold or freezing. Even room temperature water makes me queasy sometimes. When I started thinking about different kinds of warm things to sip, I started taking in a few more cups of liquid a day. We usually think of cold treat liquid things, but maybe warm is better for your little guy.
Alex N.
Sandra Dodd
-=- He has felt what autonomy feels like and he wants more! He loves it! Right now I've made everything a big, jumbled up mess by back tracking and panicking. I want to give him that sense of autonomy back but feel so stuck in fear.-=-
I think the big, jumbled up mess is all inside of you. Some of it is oozing out.
From the chat yesterday, when someone asked how to help a child feel more confident:
Sandra Dodd: If your child is feeling insecure or a parent is lacking confidence, don't compare your child to ideal, imaginary other "fifth graders" or whatever. Compare the whole of him to what he would be knowing, doing, experiencing, if he were in school. The good things and the bad things.
and a while later, same chat:
Sandra Dodd: We can nurture confidence in kids by becoming confident ourselves.
I'm pretty confident that having a mom who's freaking out contributes to having a child who freaks out (or glares, or avoids, or is stressed).
Sometimes it's very difficult not to express fears. Keith's in the hospital. I visited for less than an hour today and couldn't stay. He needed to sleep anyway, which saved me, but the whole deal was agitating my innards.
Sandra
[Non-text portions of this message have been removed]
I think the big, jumbled up mess is all inside of you. Some of it is oozing out.
From the chat yesterday, when someone asked how to help a child feel more confident:
Sandra Dodd: If your child is feeling insecure or a parent is lacking confidence, don't compare your child to ideal, imaginary other "fifth graders" or whatever. Compare the whole of him to what he would be knowing, doing, experiencing, if he were in school. The good things and the bad things.
and a while later, same chat:
Sandra Dodd: We can nurture confidence in kids by becoming confident ourselves.
I'm pretty confident that having a mom who's freaking out contributes to having a child who freaks out (or glares, or avoids, or is stressed).
Sometimes it's very difficult not to express fears. Keith's in the hospital. I visited for less than an hour today and couldn't stay. He needed to sleep anyway, which saved me, but the whole deal was agitating my innards.
Sandra
[Non-text portions of this message have been removed]
Kirstin Eventyr
>For instance in Texas once you are a year out with no complications youonly need blood draws and doctor's visits every three months. When we moved
here the nephrologist we choose insisted on every two months. There was no
budging from that. So, I called the doctor that is an hour away and they
insisted on blood draws every month but were willing to go every couple
months on the doctor's visit. At the time Austin wanted the doctor with the
least amount of blood drawls. Actually he wants a doctor who will let him do
what he did in Texas but none so far are willing to go out as far as three
months. To me it seems each doctor has a way they like to do things that
they insist is the right way but how can that be when each doctor has a
different way to do things? It's maddening. Maybe I should revisit the idea
of trying another doctor even if it means more blood draws with Austin.<
Could you go ahead and schedule the every 1 or 2 month blood draws for every
3 months? What the Dr. says is required may be dodged by simply scheduling
it with the lab at your convenience. Our pediatrician wanted us to schedule
vaccinations at specific intervals and I chose to schedule them according to
what worked best for my child.
Kirstin
On Tue, Feb 1, 2011 at 9:11 PM, Sandra Dodd <Sandra@...> wrote:
>
>
> -=- He has felt what autonomy feels like and he wants more! He loves it!
> Right now I've made everything a big, jumbled up mess by back tracking and
> panicking. I want to give him that sense of autonomy back but feel so stuck
> in fear.-=-
>
> I think the big, jumbled up mess is all inside of you. Some of it is oozing
> out.
>
> From the chat yesterday, when someone asked how to help a child feel more
> confident:
>
> Sandra Dodd: If your child is feeling insecure or a parent is lacking
> confidence, don't compare your child to ideal, imaginary other "fifth
> graders" or whatever. Compare the whole of him to what he would be knowing,
> doing, experiencing, if he were in school. The good things and the bad
> things.
>
> and a while later, same chat:
>
> Sandra Dodd: We can nurture confidence in kids by becoming confident
> ourselves.
>
> I'm pretty confident that having a mom who's freaking out contributes to
> having a child who freaks out (or glares, or avoids, or is stressed).
>
> Sometimes it's very difficult not to express fears. Keith's in the
> hospital. I visited for less than an hour today and couldn't stay. He needed
> to sleep anyway, which saved me, but the whole deal was agitating my
> innards.
>
> Sandra
>
>
> [Non-text portions of this message have been removed]
>
>
>
[Non-text portions of this message have been removed]
Pam Laricchia
<< He has felt what autonomy feels like and he wants more! He loves it! Right now I've made everything a big, jumbled up mess by back tracking and
panicking. I want to give him that sense of autonomy back but feel so stuck in fear. >>
Yes, fear can do so much damage to the trust and relationship we've developed with our children. My youngest son developed a chronic illness a couple
years ago and I found how it intertwined with unschooling really interesting. I wrote about it for Natural Life (during that period when Life Learning
was rolled into it), the Mar/Apr 2010 issue. The magazine's tag line for the article was, "Helping a child self-manage a chronic disease is a good
test of unschooling principles." It's on my blog now if you'd like to read it:
http://livingjoyfully.blogspot.com/2010/05/natural-life-article.html
I have approached the situation from the perspective of fully supporting him learning what he needs to know about his health; as much self-management,
or autonomy, as *he* is interested in taking on.
Shifting to focus on the self-management aspect would help you guys, I think. For example, you mentioned, "We have been asking him if he minds taking
a bolus and if he says sure then we give him some fluids that way." This phrasing makes the question personal - do you mind doing this for me? - such
that to answer the question he probably thinks about whether the act of taking a bolus would be annoying in the moment or not. If he says sure, he's
saying yes to you, not making a decision about his health based on the current circumstances. (If he's not interested in self-management, then you're
managing the medical decisions, and there's no need to even make it a question, just figure out the when with him.)
But it seems he is interested in self-management so even just rephrasing the question something like "You haven't had any liquids in a while, do you
want to take a bolus?" goes a long way. (Or "do you think you should take a bolus?" but that might set up resistance since you guys are at odds about
it right now and he may feel like you're testing him - that'll work once he trusts that you won't be disappointed in him if he says no.)
It may be subtle rewording, but it sets up a totally different situation; it's sharing an observation and giving him the power of the choice. Now when
he thinks about an answer he's thinking about his health, his liquid intake, and deciding whether more fluids are a good idea in the moment. Now it's
not about you, not about your request (where you'd already decided that he should take a bolus), but about his fluids. It's not personal any more (so
less likely to erode your relationship), now it's just about the illness and how to best manage it.
Pam
[Non-text portions of this message have been removed]
panicking. I want to give him that sense of autonomy back but feel so stuck in fear. >>
Yes, fear can do so much damage to the trust and relationship we've developed with our children. My youngest son developed a chronic illness a couple
years ago and I found how it intertwined with unschooling really interesting. I wrote about it for Natural Life (during that period when Life Learning
was rolled into it), the Mar/Apr 2010 issue. The magazine's tag line for the article was, "Helping a child self-manage a chronic disease is a good
test of unschooling principles." It's on my blog now if you'd like to read it:
http://livingjoyfully.blogspot.com/2010/05/natural-life-article.html
I have approached the situation from the perspective of fully supporting him learning what he needs to know about his health; as much self-management,
or autonomy, as *he* is interested in taking on.
Shifting to focus on the self-management aspect would help you guys, I think. For example, you mentioned, "We have been asking him if he minds taking
a bolus and if he says sure then we give him some fluids that way." This phrasing makes the question personal - do you mind doing this for me? - such
that to answer the question he probably thinks about whether the act of taking a bolus would be annoying in the moment or not. If he says sure, he's
saying yes to you, not making a decision about his health based on the current circumstances. (If he's not interested in self-management, then you're
managing the medical decisions, and there's no need to even make it a question, just figure out the when with him.)
But it seems he is interested in self-management so even just rephrasing the question something like "You haven't had any liquids in a while, do you
want to take a bolus?" goes a long way. (Or "do you think you should take a bolus?" but that might set up resistance since you guys are at odds about
it right now and he may feel like you're testing him - that'll work once he trusts that you won't be disappointed in him if he says no.)
It may be subtle rewording, but it sets up a totally different situation; it's sharing an observation and giving him the power of the choice. Now when
he thinks about an answer he's thinking about his health, his liquid intake, and deciding whether more fluids are a good idea in the moment. Now it's
not about you, not about your request (where you'd already decided that he should take a bolus), but about his fluids. It's not personal any more (so
less likely to erode your relationship), now it's just about the illness and how to best manage it.
Pam
[Non-text portions of this message have been removed]
Ed Wendell
I've always enjoyed a cup of luke warm to hot water. And of course people always think I weird ;) I love hot teas too but just plain hot water tastes just as good to me. I never add ice to my drinks. I do enjoy refrigerator cold tea in the summer but tap water is usually just the right temp. The other day I wanted a Dr Pepper and just drank it. It's really cold here today and I'm going back and forth with a mug of hot tea and a mug of hot water ;)
What about fun or fancy type cups? What is he interested in? Zac always had Star Wars cups when he was younger. Then he went through a stage where he preferred a goblet - he had a plastic one with skulls and jewels on it - like a pirate goblet?
For the past two years he has had a gallon glass jar with a pouring lid that he/we keep filled and it is in the family room at all times and he fills a glass at his convenience. We started off with it in the fridge so he/we would always have cold water available but at some point he took it to the family room and there it stays. He brings it up to fill it and often will take a cup of ice down to put in with the water to keep it cool.
Here is where I found the jar: http://www.freshwatersystems.com/c-657-glass-jars-lids.aspx I will mention that I bought extra lids as the lids wear out after a while. I had started out with trying to find a "tea" jar but they all have spouts/spigots on the bottom anymore and I did not want a spout/spigot on the bottom. After hours of searching this is what I found.
Would he like a water bottle? - they make ones that you can clip to your belt loop. They make small 8oz ones. ones with fantastic themes / designs, etc.
If he likes his beverages cold they have those glasses and bottles with those thingies in the middle that you freeze to keep your beverage cold.
Could he keep a cooler in the room he is in the most - a cooler with a freezer pack to keep his drink cold? They make mini frost free fridges for about 50.00 that keep beverages cool - notice I said cool not cold. The ones that keep things cold have a freezer in the top and they have to be defrosted now and then. (my experience anyway)
What about a camel back - it's a pack that you wear on your back and sip liquid though a "hose" Bicyclists & hikers use them, other athletes do too. Zac has one he uses for Air Soft that is used by the military - we bought it at a military surplus store (it was new though)
We have an ice shaver. Zac used to love shaved ice - no flavoring - just fluffy shaved ice. Ours was a hand crank but I know they have electric ones - ice shavers & snow-cone machines? Slushies?
Ice cube trays with various shapes of ice? those things you freeze to use in place of ice cubes - they come in all kinds of fun shapes/themes. Can be found on line and at party supply stores.
What about an umbrella drink thing for his drinks? or those sword picks with a cherry on it or some such?
I'm just brain storming ideas that he might think was fun and puts him in the driver's seat. These are also fun for anyone ;)
Lisa W.
[Non-text portions of this message have been removed]
What about fun or fancy type cups? What is he interested in? Zac always had Star Wars cups when he was younger. Then he went through a stage where he preferred a goblet - he had a plastic one with skulls and jewels on it - like a pirate goblet?
For the past two years he has had a gallon glass jar with a pouring lid that he/we keep filled and it is in the family room at all times and he fills a glass at his convenience. We started off with it in the fridge so he/we would always have cold water available but at some point he took it to the family room and there it stays. He brings it up to fill it and often will take a cup of ice down to put in with the water to keep it cool.
Here is where I found the jar: http://www.freshwatersystems.com/c-657-glass-jars-lids.aspx I will mention that I bought extra lids as the lids wear out after a while. I had started out with trying to find a "tea" jar but they all have spouts/spigots on the bottom anymore and I did not want a spout/spigot on the bottom. After hours of searching this is what I found.
Would he like a water bottle? - they make ones that you can clip to your belt loop. They make small 8oz ones. ones with fantastic themes / designs, etc.
If he likes his beverages cold they have those glasses and bottles with those thingies in the middle that you freeze to keep your beverage cold.
Could he keep a cooler in the room he is in the most - a cooler with a freezer pack to keep his drink cold? They make mini frost free fridges for about 50.00 that keep beverages cool - notice I said cool not cold. The ones that keep things cold have a freezer in the top and they have to be defrosted now and then. (my experience anyway)
What about a camel back - it's a pack that you wear on your back and sip liquid though a "hose" Bicyclists & hikers use them, other athletes do too. Zac has one he uses for Air Soft that is used by the military - we bought it at a military surplus store (it was new though)
We have an ice shaver. Zac used to love shaved ice - no flavoring - just fluffy shaved ice. Ours was a hand crank but I know they have electric ones - ice shavers & snow-cone machines? Slushies?
Ice cube trays with various shapes of ice? those things you freeze to use in place of ice cubes - they come in all kinds of fun shapes/themes. Can be found on line and at party supply stores.
What about an umbrella drink thing for his drinks? or those sword picks with a cherry on it or some such?
I'm just brain storming ideas that he might think was fun and puts him in the driver's seat. These are also fun for anyone ;)
Lisa W.
[Non-text portions of this message have been removed]
Tina Tarbutton
To piggy back on the keeping drinks available idea. We used to look for
bottles of water on sale, and buy cases and cases at a time. We'd do the
same thing with the little single pack serving of sugar free water
flavorings. We typically had close to a full case in the fridge, and 1 or
more cases in each room we frequented, as well as boxes of the flavoring
everywhere.
Now we're living in a much smaller space with lots of people sharing the
fridge, and my mom found these cool water bottles at walmart. They almost
looked like a double helix, with a hole in the center. Anyways, we picked
up a ton of them and every few days we'll gather them all up and refill and
replace them in various rooms, etc. There's water bottles everywhere in
this house (looking at 2 empty ones beside my computer as we speak).
Tina
bottles of water on sale, and buy cases and cases at a time. We'd do the
same thing with the little single pack serving of sugar free water
flavorings. We typically had close to a full case in the fridge, and 1 or
more cases in each room we frequented, as well as boxes of the flavoring
everywhere.
Now we're living in a much smaller space with lots of people sharing the
fridge, and my mom found these cool water bottles at walmart. They almost
looked like a double helix, with a hole in the center. Anyways, we picked
up a ton of them and every few days we'll gather them all up and refill and
replace them in various rooms, etc. There's water bottles everywhere in
this house (looking at 2 empty ones beside my computer as we speak).
Tina
On Wed, Feb 2, 2011 at 12:55 PM, Ed Wendell <ewendell@...> wrote:
>
>
> I've always enjoyed a cup of luke warm to hot water. And of course people
> always think I weird ;) I love hot teas too but just plain hot water tastes
> just as good to me. I never add ice to my drinks. I do enjoy refrigerator
> cold tea in the summer but tap water is usually just the right temp. The
> other day I wanted a Dr Pepper and just drank it. It's really cold here
> today and I'm going back and forth with a mug of hot tea and a mug of hot
> water ;)
>
> What about fun or fancy type cups? What is he interested in? Zac always had
> Star Wars cups when he was younger. Then he went through a stage where he
> preferred a goblet - he had a plastic one with skulls and jewels on it -
> like a pirate goblet?
>
> For the past two years he has had a gallon glass jar with a pouring lid
> that he/we keep filled and it is in the family room at all times and he
> fills a glass at his convenience. We started off with it in the fridge so
> he/we would always have cold water available but at some point he took it to
> the family room and there it stays. He brings it up to fill it and often
> will take a cup of ice down to put in with the water to keep it cool.
>
> Here is where I found the jar:
> http://www.freshwatersystems.com/c-657-glass-jars-lids.aspx I will mention
> that I bought extra lids as the lids wear out after a while. I had started
> out with trying to find a "tea" jar but they all have spouts/spigots on the
> bottom anymore and I did not want a spout/spigot on the bottom. After hours
> of searching this is what I found.
>
> Would he like a water bottle? - they make ones that you can clip to your
> belt loop. They make small 8oz ones. ones with fantastic themes / designs,
> etc.
>
> If he likes his beverages cold they have those glasses and bottles with
> those thingies in the middle that you freeze to keep your beverage cold.
>
> Could he keep a cooler in the room he is in the most - a cooler with a
> freezer pack to keep his drink cold? They make mini frost free fridges for
> about 50.00 that keep beverages cool - notice I said cool not cold. The ones
> that keep things cold have a freezer in the top and they have to be
> defrosted now and then. (my experience anyway)
>
> What about a camel back - it's a pack that you wear on your back and sip
> liquid though a "hose" Bicyclists & hikers use them, other athletes do too.
> Zac has one he uses for Air Soft that is used by the military - we bought it
> at a military surplus store (it was new though)
>
> We have an ice shaver. Zac used to love shaved ice - no flavoring - just
> fluffy shaved ice. Ours was a hand crank but I know they have electric ones
> - ice shavers & snow-cone machines? Slushies?
>
> Ice cube trays with various shapes of ice? those things you freeze to use
> in place of ice cubes - they come in all kinds of fun shapes/themes. Can be
> found on line and at party supply stores.
>
> What about an umbrella drink thing for his drinks? or those sword picks
> with a cherry on it or some such?
>
> I'm just brain storming ideas that he might think was fun and puts him in
> the driver's seat. These are also fun for anyone ;)
>
> Lisa W.
>
>
> [Non-text portions of this message have been removed]
>
>
>
[Non-text portions of this message have been removed]
k
Another thing to consider about pressuring a child to pee, poop, get more
fluids, eat things others pick out, etc. is that the child will have less
and less experience listening when his own body is pressuring him to do
those things.
Sometimes when you talk about being concerned and to please do these things
and isn't now a good time to try (in order to ease the worry), you are in
effect joining your voice in with bodily processes inside him that say
"please do these things and isn't now a good time."
He's hearing two things at least some of the time. Let it be one thing only.
More often.
He's probably feeling that you're not listening when he says with his body
language (and maybe his words) that he doesn't want to be pushed.
My son reminds me to do things. Sometimes he tells me something I could be
doing differently. The difference is I know I can choose whether or not to
pay attention. I'm reminding myself more often to note that difference and
to act on it more often as Karl grows older and more able to take on lots
more decisions.
If the goal is to give your child the opportunity to gradually gain the
ability to hear and respond to the need of his body to pee, poop, drink
fluids, eat well, etc. then that seems like a greater possibility than
avoiding future kidney problems altogether.
So is your son on a waiting list for when the kidney that he has now gives
out? I think you said that transplants last something like 20 years at the
most. So when he's 23? Or does one go on the waiting list only after
problems show up?
The reason I ask is to suggest a feel for the amount of leeway you might
have to exercise in letting your child get on with gaining the ability to
realize when problems arise.
~Katherine
[Non-text portions of this message have been removed]
fluids, eat things others pick out, etc. is that the child will have less
and less experience listening when his own body is pressuring him to do
those things.
Sometimes when you talk about being concerned and to please do these things
and isn't now a good time to try (in order to ease the worry), you are in
effect joining your voice in with bodily processes inside him that say
"please do these things and isn't now a good time."
He's hearing two things at least some of the time. Let it be one thing only.
More often.
He's probably feeling that you're not listening when he says with his body
language (and maybe his words) that he doesn't want to be pushed.
My son reminds me to do things. Sometimes he tells me something I could be
doing differently. The difference is I know I can choose whether or not to
pay attention. I'm reminding myself more often to note that difference and
to act on it more often as Karl grows older and more able to take on lots
more decisions.
If the goal is to give your child the opportunity to gradually gain the
ability to hear and respond to the need of his body to pee, poop, drink
fluids, eat well, etc. then that seems like a greater possibility than
avoiding future kidney problems altogether.
So is your son on a waiting list for when the kidney that he has now gives
out? I think you said that transplants last something like 20 years at the
most. So when he's 23? Or does one go on the waiting list only after
problems show up?
The reason I ask is to suggest a feel for the amount of leeway you might
have to exercise in letting your child get on with gaining the ability to
realize when problems arise.
~Katherine
[Non-text portions of this message have been removed]
ransomenote
Is there a support group your son could attend where he could meet and talk with other children coping with similar issues? I'm just thinking it might help him to know that he's not the only kid dealing with this and he might like being able to say "me, too!" or have another kid to commiserate with.
- Meg
- Meg
carrieann.hollis
Hi, I am new in here but read your post and was wondering if anyone has ever tested your son for Celiac deisease or Gluten Intolerance? My children are Intolerant to a lot of things but as I go I read the side effects of being allergic to foods nd such and the lack of Dr.'s wanting to test for simple things such as Gluten Intolerance. There is also a disorder called encoprisis where children cannot control their environment so they control their body or bowel movements or what they eat, etc. I am always home if you want to chat on phone my number is 720-837-8467. I am new to thinking about Unschooling as we homeschool right now but it is not working so well. Well, hope things get better for you all, Carrie Ann
--- In [email protected], "hmbpie" <heatherpie@...> wrote:
>
> I have been de-schooling Austin (9 years old) since September and have gotten incredibly brilliant advice here since I started. I am here for some more.
>
>
> Here is the back story and where the fear comes from. Austin had a kidney transplant when he was almost three years old. His transplanted kidney is the only one he has. His original two never formed to be much bigger than a raisin and only had minimal function. They have both since been removed. He has reflux from his bladder into his transplanted kidney. A while back he was having recurrent bladder infections because he was holding. From those infections and the tests that followed we found out that urine was flowing freely from bladder to kidney (reflux). With the reflux into his kidney an infection in his bladder can very well end up in his kidney which could lead to a kidney infection which could lead to rejection. About a year ago we had a procedure called deflux done where the opening from the bladder into the ureter that leads to his kidney was made smaller so that there would be less reflux. There is less but there is still some.
>
>
> Here is my problem. We moved to San Francisco and therefore got a new nephrologist (kidney doctor). They are very clinical here. At home we had an old, friendly cowboy type who looked at Austin's blood and urine work, gave him a physical exam and told us we were doing a great job. When I talked to him about fears concerning food and drink he would tell me not to worry so much that he looks good inside and out.
>
>
> Our new nephrologist however has got me in a tizzy. She said his blood pressure is low and that young children who have adult kidneys in their body need higher blood pressure to ensure enough blood is pumping through the kidney. She wanted us to buy a blood pressure monitor and record his blood pressure. So, we bought one and recorded his blood pressure which pissed Austin off.
>
>
> She also told us that based off of what we told her he is not getting enough fluids. He gets 24 oz. at night through a pump and then during the day he probably only drinks about 12-20 oz. I know this isn't enough. I have always thought he didn't drink enough for someone who has a transplanted kidney but, in Texas we were told his blood and urine look great so keep up the good work. Our new nephrologist tells me that she thinks his blood pressure is low because he is dehydrated.
>
>
> She was also concerned that he only went pee about three times a day which goes back to not enough fluid which goes back to low blood pressure which goes back to higher risk for rejection.
>
>
>
> When I left this panic inducing appointment I started pushing fluid and more bath room breaks. Now we are at a point with Austin where he is refusing to eat, drink, pee or poop. He says if he doesn't drink he won't have to go pee, if he doesn't eat he won't need to go poop. The poop thing is weird to me because I haven't encountered it before but, holding his pee scares the crap out of me because of the reflux into his kidney. The longer he holds the more likely he'll get an infection. If he has to go pee he will let a little out so that it is not uncomfortable into his pants. He used to do this when he was much younger. I think he may be becoming impacted since he is holding his poop and not drinking. He is having small poop accidents which is a new thing I have never dealt with before and honestly am not dealing with well.
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> We just had an appointment last week with the nephrologist and I told her I can't leave here in a panic again. I told her I know my son and I know what will work best for him and that in Austin, TX he was a perfect transplant patient. He was treated like a rock star when he walked in but, since moving here he is a dehydrated little boy with poor blood pressure who needs to pee more and all these changes need to be made. I told her that as long as his blood, urine and physical exam of his kidney looks good that I will handle the rest.
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> Now that I wrote all that out it seems silly to even mention teeth brushing. Since we started deschooling with food he has taken to eating a lot of candy and also not brushing his teeth. I am all on board (and so is he) with using mouth rinses and such to get the sugar off his teeth but his teeth are turning so yellow they almost look orange and there is always food built up on them. When he smiles it's hard not to notice.
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> Right now I feel like "We can unschool this but not that." Or that I let go of too much too soon and need to back track. I am to the point where if he has not had any fluid I bolus him fluid (Use a tube and big syringe to push fluid into his g-tube which is a button in in his stomach where he can take medicine or supplemental nutrition) and if it's been longer than three hours tell him he has to stop and go pee. It sucks. I HATE it! He hates it but, I am at this point where I am not comfortable waiting it out and the consequences that go with that.
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> I was hoping that while writing this I would have some epiphanies but the only one that comes to mind is to call his doctor in Texas and ask him to look at Austin's progress notes and see what he thinks. We have looked into other nephrologists in the area that specialize in children but the closest one is an hour away and they want blood draws once a month instead of every two months (in Texas it was every three).
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Sandra Dodd
-=-There is also a disorder called encoprisis where children cannot control their environment so they control their body or bowel movements or what they eat, etc. -=-
It's not "a disorder." It's a response to feeling helpless.
It shouldn't happen with unschoolers in the absence of abuse or divorce.
This list isn't a good place to discuss "disorders" or "diseases" when the unschooling factors haven't yet been explored.
Sandra the listowner
[Non-text portions of this message have been removed]
It's not "a disorder." It's a response to feeling helpless.
It shouldn't happen with unschoolers in the absence of abuse or divorce.
This list isn't a good place to discuss "disorders" or "diseases" when the unschooling factors haven't yet been explored.
Sandra the listowner
[Non-text portions of this message have been removed]