Need info on Renal tubular acidosis (long)

[anamika]

DD was just diagnosed with RTA. I have posted a couple of times about her low weight and lack of appetite. She's 16 lbs at 1 yr.We high five each other if she eats a whole piece of toast or finishes a Yobaby (over a whole day). Our new ped in Boston has been very agressive about monitoring her weight from the start and he insisted on the horrible blood test (they draw blood from the neck - picture that with a small screaming baby and three people holding her down). We had to do it twice since the first result was ambiguous. But the second left no doubt as to the diagnosis.
Our ped has been very reassuring - he assures us that this is very common esp among girls [then how come I have never heard of it???] and very easy to rectify. She gets a polycitrate solution 4 times a day. The ped says this should reverse any growth retardation, increase her appetite and put hair on her chest (just kidding about the last) - seriously, he makes it sound like it's a magic cure. Is it really that simple? Or is he shielding me from some other horrible truths (gulp!!)?? I'm almost too afraid to ask.
We finally got internet after 4 weeks and I was able to look at a few sites but I really need to hear from other BTDT moms.
As a biochemist I understand the acid/base equilibrium and other physiological aspects of the condition. As a mom, my heart is gripped with terror about all the "what if's"?
We're going back in two weeks for another blood test (fun!!) to see if the citrate is working.
DH is taking the whole thing in stride with his usual positive attitude (so annoying :)). He feels if this helps her gain weight and gets her too eat - great. I'm mostly staying calm but of course, the code of motherhood insists that I freak myself out with worrying.
Sorry if this is all rambling.
If any moms have any experience with RTA please share. Please reassure me that this will work out for the best.
TIA,

[tarahsolazy]

I don't have personal experience with RTA, but I'm a ped, and I agree with yours. Having acidosis makes you NOT hungry. The polycitrate, once you get the dose right, will totally fix that. Depending on which kind she has, she'll either outgrow it, or have to take the stuff for life. That should be it, though.

[anamika]

Thanks Tarah. I guess it's not all that common since no one else seems to have any info/experience with this.
Thanks again,

[anamika]

Thanks!!

[brittone2]

I don't have any experience w/ this but I want to say I'm sorry that you got this news, but it sounds like it is quite treatable....

My DS isn't very big (neither am I though) at 21 months (26ish lbs I think) and doesn't ever eat much (eats a good variety but small volume...I can relate to the whole day to eat something the size of a yobaby) so it was interesting to read your thread. He does nurse like a maniac though so that could be part of it. Are there any other obvious symptoms, just out of curiousity?

I wish you all the best in dealing with this. Let us know how things go when your DD gets rechecked in 2 weeks. (((((hugs)))))).

[anamika]

Thanks Beth. I needed some hugs :)
The really scary part (to me) is that this doesn't affect the developmental milestones at all - just growth and appetite. DH and I were always shrugging off her low weight by arguing that she's developmentally on track. We almost didn't go back to get her retested but after DH read up about it we felt it prudent to go ahead.
DH and I are both not very big either plus Indian kids weigh less on average (I think). However, we got some info on Indian growth charts and she falls low on that scale too.
She self weaned at around 13 months :( but she doesn't drink a whole lotta milk either. So maybe that makes a difference in your case. DD would eat about 1 slice of toast or 12 baked beans or 1 yobaby when she was really hungry. This is after not having eaten anything for 5-6 hrs.
I know how stressful it can get when you feel your DC is not eating enough so you have my sympathies :)
Is your DS low on the charts too? DD is way below the charts. My ped made it sound like RTA is very common so I'm surprised more moms have not responded. He also gave me the impression that the test for RTA was routine in cases where the baby was below the charts but maybe not??
The doctor says it could take upto 3 months to see improvement in her wieght so we just have to hang in there.
Thanks again for your good wishes.
HTH,

[brittone2]

DS is on the charts...around 25th percentile I think at his last visit. He started off high in the percentiles (was 8lbs 4oz at birth which wasn't super high but then was up to 90th or so by 2 months). He stayed there for a while, then he dropped toward 75th and 50th. He's been pretty steady around 25th for a while now I think...so maybe since he's on the charts we're okay. I'm also small and so are my parents, so I never expected he'd be a bruiser or anything ;) He's just not a big eater...a good variety but a few bites here and there (unless it is spinich and feta chicken sausage, in which case he eats like a horse LOL). But he still nurses a lot and is obviously getting calories from that.

His docs have never expressed much of a concern and I do pretty well about not worrying about his eating 90% of the time. He eats a good mix of things, just small amounts.

Thanks for the information on RTA. It is good to have in the back of my mind just in case we have concerns in the future. I hope that things work out okay and that the treatment is very effective for your DD. I learned a lot from your post :)

Take care and please keep us all posted.

[cbm]

I have no experience with this condition; I just wanted to send you best wishes and positive vibes.

Claudia
DS 12/18/04