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January 23rd, 2012, 09:43 PM
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MauMama MauMama is offline
formerly La_Sirena
Join Date: Apr 2011
Location: Aotearoa
Posts: 317
Oh Mama. My heart goes out to Danny and your family. I just want to scoop him up and give him a cuddle. What a warrior boy to keep going! I so hope the Paeds can figure it out. It's so unfair for him to struggle.

We did the Delayed Gastric Emptying testing with the barium swallow and they removed scar tissue during her gastroscopy.

I'm just thinking aloud, but have you guys had any autoimmune testing done for things like Crohn's or Lupus? I know they use sed rates and other inflammatory markers. I'm sure they would have seen inflamed tissue during the colonoscopy but if he hasn't developed it yet, he could have the raised ANA or something other as a flag.

There has to be a cause to his suffering. I wonder if an internalist would take him being so young?

There is a good pdf called Introduction to Disorders that Mimic Reflux: Gastrointestinal “Zebras” @

Sophie had a sort of diagnosis for abdominal migraine which no one explored further once she was diagnosed as having Autism. They sort of said: Oh, she has Autism, therefore all her sore joints and tummy troubles are from it.

I just sort of went: *headbang against wall* and until we can find someone else to take her, we're sort of short of options.

Big, big hugs to you. If you'd like to email back and forth, we can. I know it meant a lot to have someone to vent to at times.

Jen + Matt
Parents to Sophie, the Wondergirl
Asperger's Syndrome
Joint Hypermobility
GERD & Constipation

Angels Autum & Isla (2007)
+ 7 others (2002 - 2011)

Mama with arthritis & connective tissue disorder called TRaPS
I've been charting since Jan 16, 2001 and TTA since April 2007.
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