Remember this post from about a month ago? How I was wishing I could change the Ph in my boy's blood and get him to suddenly and magically start gaining weight, stop vomiting, have regular bowel movements, stop having his arms buckle underneath him when crawling, and stop being lethargic?
Well, turns out we can change his Ph.
His blood is too acidic. He has renal tubular acidosis. It's rare. Even among all my doctor and nurse friends I don't know anyone (other than the nephrologist) who knows anyone who has been diagnosed with RTA.
But he has it. And we can do something about it. Finally, an answer.
We are rejoicing.
He isn't tolerating the medicine well yet, but we're hopeful.
Downside: there are lots more blood tests in his future. Poor babe.
So, so glad you have an answer and a plan now! You can kick this one too, Baby J! My girls still pray for you by that name and I have to remind them that you're not a baby anymore. :)
ReplyDeleteCarrie Andersson
We still call him that, too. :)
DeleteI was searching for renal tubal acidosis when I found this blog. My 23 weeker is now 1 week adjusted, still in NICU but had been doing real well. He had a spontaneous bowel perforation at 1 week old that led to resection and on the 11th of January he finally got reconnected. We have been trying to get him to full feeds so we can come home, but now they are saying RTA is preventing this. We will know for sure tomorrow and if its the care he will be put on meds. Hopefully it works. I hope it worked for you because we are so ready to get him home. Our Dr says he will eventually grow out of it? But I see here that's not the case for you. I'm wondering if it will be the same for us. Also, had your son had any signs of RTA when he was an infant.
ReplyDeleteHi! Sorry for the delay in my reply. My son caught the dreaded RSV, and we've just gotten back from a few nights in the hospital on oxygen. The GOOD news is it hits a three year old former micropreemie a LOT easier than it hits a preemie or a newborn, so it was a mostly uneventful stay.
DeleteANYWAY, to answer your question, major symptoms of RTA when he was an infant and toddler were: tachypnia (fast breathing), vomiting, lethargy (like, would move normally and crawl for five to ten minutes then lay down absolutely still for a three minute breather), low tone/weak, and abnormal bowel movements. The bowel movements fixed themselves first after we introduced bicitra, then the tachypnia was gone, and now he doesn't vomit and is starting to make up ground on low tone issues.
Since your child was so young at diagnosis, my hope is that they WON'T hit all the same tough spots as my kid, that your child will avoid being labeled as "failure to thrive" with no cause and that they CAN thrive.
Incidentally son also has nephrocalcinosis from the kidney condition, but that did not appear until he was two.
Hope this helps? You can see my contact info and email me if you have other questions.