Kids with kidney problems
- Thread starter camily
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Chasey_Lane
Salt Life
What kind of problems does she have, if you don't mind saying? My brother was about 12 before he stopped wetting the bed. I don't think it was so much a health issue as it was a lazy/can't wake up thing.
danceintherain
New Member
I am not to familiar with RTA but I feel your pain. My son has kidney stones. He was diagnosed when he was 10. I went out and got alot of books. I made appointments with different urologists to gather information. We have a good relationship with our pediatrition and she has been wonderful in answering questions and getting us help we need. Hang in there!!camily said:
camily
Peace
Kidney stones is a major symptom of RTA. It is because the body robs the bones of calcium and they collect in the kidneys in the form of kidney stones. Nephrocalcification is hardening of the entire kidney because of the same problem. My daughter taked Bicitra 3x's a day to keep the level of acid in her body down. Actually, it raises the bicarbonate level thus lowering the acid. My daughter is so tiny. She weighs only 19 1/2lb. and she is 20 months old. This is because the RTA also causes calories to be "wasted" out of her body with the bicarbonate she loses. She eats continuously but doesn't gain anything. It has been a real struggle with her but she is such a little cutie, and soooo smart. Of course, I am a little biased!
danceintherain
New Member
The stones are exactly 50% calcium osolate and 50% calcium phosphate. A big thing was changing his diet and really increasing his fluid intake. Lots of water and lots of acidic fruit juices. Everyone needs calcium and its practically in everything. We had to completely cut out chocolate, caffeine, dark leafy veggies. I was told that kidney stones are very common in this part of Maryland.camily said:
camily
Peace
She is tiny, very tiny. That is the biggest problem that you can see. We have to watch her fluid intake because kids with RTA get dehydrated VERY easily and are hospitalized often. She has very little glucose reserve (fat) so her blood sugar drops VERY fast if she is sick. Vomiting is a big problem also. Not sure why this is but it happens alot with RTA kids. Must be because her electrolytes are so out of whack when her co2 (bicarb) drops.Chasey_Lane said:
camily
Peace
Well, it can be. Some kids who have RTA due to prematurity often outgrow it. There is a hereditary form that most do not outgrow. There are so many different forms that there is really no information. It is on the rare disease list. The best numbers are 1 in 10,000. They say my daughter has type 1 Distal RTA. We basically have to wait and see. This problem also can cause deafness as they get older. It sounds strange, but it is only in the resessive hereditary form. Which we don't know if she has or not. She does see a Geneticist at Children's along with a Nephrologist, Gastrointerologist and Hepatologist (sp?) but no real answers. There is not much known about RTA since it is so rare. Poor little thing was also born tongue tied (has since had surgery) and has had UTI's along with several other minor problems. My other two kids are as healthy as you can get, but are little devils!! hehe
camily
Peace
Took Celie to the doctor because I just had a gut feeling. They did a co2 test and it is low again. She's 5yo and 29lb. and 39" tall. Looks like the RTA has returned. We went for a bone age scan yesterday. Probably will do a re test on the co2 just to be sure it wasn't a false low. Poor little thing. She's just so tiny.
SoMDGirl42
Well-Known Member
awww poor baby. That is soooo tiny, my three y/o is 43 pounds and come up to my waist, I think she's 44". She wears a size 5 and we're headed to a six soon.
I hope it is false low and she hits a big growth spurt and grows like a weed and feels better soon.
theArtistFormerlyKnownAs
Well-Known Member
Wow.
Just looking through some older posts and ran across this.
Good luck with everything!
She still has plenty of time to outgrow it, so hopefully everything will be "normal" soon enough. At least it can be somewhat managed, as difficult as it may be
Just looking through some older posts and ran across this.
Good luck with everything!
She still has plenty of time to outgrow it, so hopefully everything will be "normal" soon enough. At least it can be somewhat managed, as difficult as it may be
camily
Peace
Wow.
Just looking through some older posts and ran across this.
Good luck with everything!
She still has plenty of time to outgrow it, so hopefully everything will be "normal" soon enough. At least it can be somewhat managed, as difficult as it may be
Thanks. I was hoping it would be gone for good. She is in pre-k now and I was so glad she had outgrown it before school. When on the medicine thay have to take it around the clock. I didn't want her to have to go to the nurse every day for it. Plus, their bones are weaker and that may make recess and gym a little tricky.
Princess123
New Member
Hi! My DD was diagnosed with type 4 RTA when she was 17 months old. Now she is on bicitra and mineralcorticoid daily.I was shocked when she was diagnosed with this rare disease.She was very fit and fine till she was 1 year but then a routine blood test for failure to thrive showed hyperkalemia and was at DC children hosp for a week in ICU.She is 21 months old and weidhs 21 pounds. She is also very tiny. She is very active smart,that it was very difficult for me to believe that she had this. I pary for all the kids who have RTA do outgrow very soon.
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