Yesterday Jake and Addy and I headed up to St. Louis for Addy to see her GI specialist again. When we went for her 5 year check up her ped wanted to get her into GI before our scheduled appointment in February so she called and got us in super quick! St. Louis is about 3 and 1/2 hours from here so I took Jake with me so I'd have someone to talk to on the way home since it would be dark and I'd be tired!
When we first saw the doc I was getting pretty frustrated. She is the doc we saw last spring and I adored her. She was very different yesterday, however, she is very pregnant so I'm blaming the change on that. She came in and just asked what was going on and then replied "So pretty much what was going on in the spring?" She went on to talk about how we did the barium enema and it didn't show too much and there's really nothing wrong. Addy's bloated belly is behavioral!!! I'm pretty sure the look on my face was not pretty because she then decided to come and examine Addy to see if she noted changes from the spring. She said that her entire abdomen is full of air (no kidding) and all of the gas and belching has to come out somewhere. I asked her about trying a blenderized diet with Addy and she said that she wasn't familiar with it and had never heard of trying to put those types of food through a g-tube. She thinks it will ruin the tube. I know my face spoke volumes, I really couldn't believe what I was hearing. BEHAVIORAL and NEVER heard of a blenderized diet????? The behavior that she is referring to is this: You just need to see the first little bit to see what she's doing, the rest is just a poor demonstration of her knowledge lol
http://www.youtube.com/watch?v=fWjZZRYVvWg
Addy sucks on her tongue when she is tired and at other times too I guess. I don't notice it too much during the day but it is quite often at night. She swallows air while doing this and appears to be causing the distended belly. However, in my opinion I don't think it has anything to do with the inconsistent bowel issues. Fortunately she must have decided that I wasn't happy and told me she wanted to go and consult with the other GI to see if there was anything else we should look into.
After about 30 minutes she returned with another doctor. I can't remember his name, I'm going to have to look it up because I was pleased with him! He started off with going over Addy's basic history and making sure the info he had was correct. He checked Addy out and agreed that the air in her belly is pretty much everywhere. He also saw the tongue sucking thing and said it could be causing some of the issues but we have some options to look into. Praise the Lord! He is proposing three things to do. We won't necessarily have to do them all but they are possibilities. His main question was why was I so pleased with Addy's formula. She takes Elecare which I usually refer to as liquid gold. Long story short, after finding out Addy was starving and could not handle a milk based formula this was the only other option left and she did fantastic on it and was finally growing and thriving! He said that Elecare is really only for people with short gut syndrome or severe food allergies. I knew this but felt all of her reactions to milk products was how we got to the Elecare anyway. He said that he doesn't think that Addy has short gut or food allergies. She has had a blood test for food allergies and it did show that she wasn't allergic to any foods, including milk. So he wants to try to change her formula first. He wanted to just put her on Pediasure. I'm pretty sure I freaked a little bit, her history with milk products is not pretty. So he decided to start her on Peptamen Junior. That's been an ordeal trying to get that today so I'll have to finish that quest tomorrow hopefully. If the change in formula after 7 days changes nothing he is going to put her on an antibiotic which does not absorb into her gut but will kill all bacteria that could be in there. I can't remember the name of it but it's not Flagyl because she has been on it several times. If the antibiotic does nothing he will then attempt a test where Addy "drinks" a sugary substance and they will measure her breath for sugar, oxygen, carbon dioxide and other things. He's not sure she's a great candidate for the test because of her oral aversion and the fact she has DS, otherwise known as stubborn :) So all in all I'm happy that we at least have a plan of action here. Now just hoping we are able to get the formula soon so we can give it a try. We are going to try it on a weekend just in case she does get really sick on it, I don't want to be away from her. When she does have a reaction it's not a pretty thing :( really praying she doesn't react!
So after our 2 hour appointment we start to head home in the rain and then the sleet! It was a long trip home but fortunately we made it home safely :)
2 comments:
ugh - these doctors make me crazy. Glad that you were able to see that other doctor. That was a huge blessing. We too went to GI this week. I'll have to blog about it when I get a sec. Bella is on Peptamen Junior. She finally stopped vomiting when we switched over to it. So hoping good things for Addy! BTW - BElla sucks on her tongue too! Maybe it's the oral aversion self comfort tool
My son is 2 and had a severe milk protein and soy allergy from birth. Diagnosed via stool sample..Blood tests are very unreliable in infants and toddlers. He was also on ELecare...He outgrew the MPA by 15 months but he is still allergic to soy protein and soy flour. Throws up every time he has either of those. I learned the hard way... I haven't taken him to the allergist yet. He can't have pediasure because it has soy protein in it.. He has a sensory processing disorder which has severely impacted his eating. He only eats yogurt, jello, and crunchy foods. Go with your gut..Our pedi said he would outgrow it all by 2-3 years old.. I will have him tested at 3 when the tests may be more reliable.. I will have to look into Peptamen Junior for him.
Post a Comment