I used to read blogs with people who had sick kids and I would think, "what about the rest of their family? Don't they have anything positive or non sick kid related to blog about?" I am eating my thoughts these days. I have so much I would like to blog about but it seems as this has taken over our lives. So much of every part of my day is spent researching, calling new doctors, getting advice from others, or doctor visit, doctor calls, or procedures.
Once we see a new doctor, I leave with a pretty good feeling but then I start to over think things and want answers immediately. I know those answers don't come until after everything else has been eliminated but I would have thought that by now they have done every test imaginable...yet still no answers.
On Thursday we had the endoscopy done. At this visit Jayden was down to 102 pounds. I was hoping that it would show there was an ulcer, they would cauterize it and we would be on our way to getting better. Unfortunately, that was not the case. She did have two small tears in the stomach but he didn't quite classify them as ulcers yet. That would not be the cause of her pain. The only information we gained from the EGD was that her stomach is not emptying properly. The last time she ate was 19 hours before her scope and her stomach was still full of bile. Potentially that could still be a gall bladder function problem, but with the test results being "subjective", it doesn't really make a good case for gall bladder removal. He did take some biopsy's but I am guessing they will come back normal, just like every test or blood test has so far.
I happened to have one of my parents of a child this year be a pediatrician and he suggested that we meet with our pediatrician again. He said that given the little information he has, he would make the assumption that the neurological stuff and the GI stuff are related. There are apparently a few more rare childhood diseases that affect both. His suggestion was to try and get our pediatrician to admit her as an inpatient so that the neurological team and the GI team can "pow wow" together to try to find out what is going on.
To date:
Loss of 32 pounds
Hair falling out
"sallow" skin look
bloated
gets chills, but no fever. Like literally her teeth are chattering.
NONE of the 6 medications they have put her on have worked. Not even the zofran.
Tried reglan, anti spasm medication, dexilant (like a suped up prilosec), anti nausea. None of them work.
Bruising (which is typical for being on blood thinners) but with pea size lumps underneath the bruise. I don't know what that is all about.
Her pain is the worst when she wakes up, and stays for hours.
She has pain as soon as she has eaten about 3 or 4 bites, but forces herself to eat more. Then the pain continues for about an hour after eating.
Pain starts in the upper abdomen and radiates out both sides and through her back. Lately it has even been moving past her belly button to her lower abdomen.
Pretty much if she is awake, she is in pain.
Any other suggestions? I feel like we are trying all we can to get answers and are meeting a brick wall at every place we turn!