Thursday, December 18, 2008

PJ updates

Hi all, time for an update on the development of my son. PJ was seen on 12/15 for his 15 month check up. He weighed in at 20 lbs, 4 oz (just under the 50th percentile on the Down syndrome growth chart) and measured 28" long (just over the 10th percentile on the same chart) What does this mean? It means he's a shorty, and his weight gain has slowed down a lot.

The reason for the slow weight gain is because he's been spitting up/vomiting since July. At first I thought it was just baby reflux, and his Dr. put him on zantac, and all the advice I got pretty much said, well, as he gets more mobile, more upright, you'll likely see this lessen. OK, I patiently waited. (right, not so patiently) He became more mobile, and more upright, the spitting up continued. We switched him to prevacid and his pediatrician had a swallow study and an upper GI done. Results? Mild and infrequent aspiration, no thin liquids. OK. We also had a referral to see a pediatric gastroenterologist, but the first appointment they could get me was for November. OK, while waiting for that to happen, we switched from Prevacid to Prilosec. No change. A few people said that maybe at one year, when he changed from formula to whole milk things would get better. Well, they did not. In fact, it was worse in that the milk would come up curdled, and talk about STINK? ugh. So, I'm thinking, lactose intolerance? I switched him to soy milk. A day or two of relief, but then the spitting up started right back up. I gave up on the reflux meds and eventually the spitting up became acidic. You know, VOMIT. Stinky vomit. (ok, sorry) So, he's back on the prilosec, it doesn't stop the vomit, but it will at least keep the acid down to avoid damaging the esophogus.

We saw the Ped. GI in November and his thought is Celiac Disease. (intolerance to gluten, found in wheat) The way to treat? Gluten free diet for life. He drew blood, BUT, (says the Dr.) the blood test is often inconclusive, can give false positive, so the REAL test for Celiac is an endoscopy. It's scheduled for 12/31. It was scheduled earlier, but we had to postpone because PJ got congested, and they wont do it while there's congestion. So, the throwing up continues, laundry for PJ happens all the time. I really don't think it's Celiac disease. There's a few OTHER things it can be, and they are all taken care of with surgery. I don't look forward to any of it. Whatever the problem, I'm just not happy about it.

I spoke with the Nurse at the Ped GI Yesterday (12/17), and she indicated that it is NOT Celiac, and that false positives sometimes occur, but not so much false negatives. Yay)I also spoke with Leah on the phone the other day, and she gave me a lot of ideas about what could it be, and helped me to make a list of questions to ask the Dr for further diagnostic tests and questions. (Thank you so much, Leah!)

On the other hand, PJ is a mostly happy baby, crawling all over the place, pulling to stand, and now standing up without assistance. He can stand 30 seconds or so without holding onto anything, and any minute now he's going to start walking. (*fingers crossed*) He babbles a lot, different sounds, yells a lot, loves his big sister Rebecca, claps his hands, gives high fives, plays peek-a-boo, puts his hands up for "so big", and is really "on the go"

I'll update again after the endoscopy. Or before if something else happens.

One other thing - a question for anyone - you know the little things we put on our blogs that show the our kids ages? The tickers? I would sure love a ticker that I could update with weight and height growth, for keeping track purposes. Anybody familiar with that? Or anybody smart enough to create one? I can't be the only person who would be interested in one, right?

2 comments:

Leah said...

I'm glad I was able to help you come up with some ideas. On another note, will you email me with your street address? THANKS!

Shea said...

Merry Christmas!!!