Thursday, March 26, 2009

Results

Jaxon's results have come back good. But then again...I have doctor's telling me that one more thing on him is completely fine and healthy, when clearly something is wrong.

Soooo I had a long tearful talk with the doc's personal nurse. I told her that Jaxon's constant night screaming is affecting our whole family for the worse and we're at our breaking point again. A baby should NOT try vomiting 15+ times a day...

We are exhausted physically and mentally. This "reflux" is lasting way longer than expected at a high frequency. Something isn't adding up and just isn't right. Could this be a simple missed allergy? Could it be something wrong with his intestinal tract? Is this really just reflux that will go away in the next few months?? The not knowing is awful.

The GI clinic wants to see Jaxon tomorrow at 1:30pm and I've been warned that he may be staying again. If he has to stay, it's bitter sweet. They agree something is wrong and want to figure it out, but at the same time, it's unsettling to have an entire group of the best GI specialists not really know what's wrong.

The boys will be having their chiropractor evaluations today. We'll keep pushing forward until something is figured out.

7 comments:

Jessarella said...

Just wanting to send you a big (HUG)

Heather said...

Annie, I am so sorry. I just wish I could help you somehow. I pray that you do find answers because it doesn't seem that anyone should have to live this way. The fact that you all have for so long is a testament to the fact that you are both wonderful parents. Lots of prayers and hugs you way. XOXO, Heather

Candice said...

Hang in there! You guys are doing such a great job. Seriously, these boys could not ask for more involved, concerned, loving parents. The picture of Brady comforting Jaxon yesterday was so touching. Hoping you find some answers SOON!!!

A, A & J said...

Lurker here from TheNest. Has he ever been tested for Eosinophilic Esophagitis?

http://www.medicinenet.com/eosinophilic_esophagitis/article.htm

Also has he had both IgE and IgG allergy testing? Here's more info:

http://www.greatplainslaboratory.com/foodallergy.html#IgE

Hope that stuff helps... I apologize if you've already been down those roads. There is a website called kidswithfoodallergies.org and they have support forums for parents of kids that have g-tubes, j-tubes, etc. and little to no foods. It's $25 to join and access the forums, but there is a ton of information there.

Laura said...

I have been reading your blog for awhile. I can't remember if you have talked about allergies. My friends son had reflux as a baby and he is on a gluten free diet now. The doctors only said he had a "minor" wheat allergy but my friend found it makes a HUGE difference in his reflux (and BMs)
Just a thought. She saw a total change with 4 weeks of it. You guys do a great job with the boys! Keep being an advocate for your child...it's the best thing you can give them! :)

Alicea (mnbride1013) said...

I'm so sorry you are going through this, I just couldn't imagine. I know a friend of mine's son had the acid reflux problem and he ended up having to have surgery on his diaphragm, I believe. I hope they are able to pinpoint the problem soon.

Jenn said...

I really feel for you. I remember goimg throught this with my brother. He has Crohn's disease. He was sick alot, losing weight, severe stomach cramps, diarrhea...docs kept blaming nerves (he was 14 when it was at its worst) then they blamed lactose intolerence. Finally, we got the diagnosis he has today. It was a long hard road...you will get your answers though and your son is so lucky to have a Mommy who is fighting for him.