I don't think I have ever properly introduced myself. My name is
Jenny and I live in Cary, NC. I have a son who is 6 and a daughter
who is 3, both are affected. They have histories of FTT, multiple
food allergy and intolerance, reflux, motility issues, etc. My son
had all the typical signs of autism, but the thought of autism was
basically ignored by physicians and familiy (us) for quite some time
since his food allergies and gastrointestinal problems seemed a lot
more concerning. Also, when I used to ask his ped. (when he was
two) if he had autism she would say he was "too verbal and had too
much eye contact." We had him tested at age 18 months and no delays
were found, but then tested again at age three and significant
delays in motor skills and articulation were found.

At age 2 1/2 a GI specialist did some testing and found my son's IgG
to egg, wheat and oat to be through the roof and he had a positive
anti gliadin (sp?) test. When we took him off the IgG foods (he was
already off of milk, peanut and tomato) we saw a miraculous
improvement in sleep, cessation of the repetitive speech and temper
tantrums and an overall improvement in health. Unfortunatley, soon
after taking the wheat out we put the milk back in as he wasn't
testing pos. to it anymore!

There are many twists and turns to our past six years. I can't even
tell you how many different docs we dragged our kids to in hopes of
finding them some help for their gastro distress, allergies, etc.
A year and a half ago a local dev. ped. suggested our son might have
Aspergers. We also had our allergist suggest ASD as we described
his behaviors associated with foods. Our ped. thought he was bi-
polar. So, needless to say it all started sinking it and pulling
together. The early removal of casein, then gluten, probably really
saved him. Unfortunatley, we had long periods of time that we would
put him back on the foods to try them out as his diet was so slim
already. A little over a year ago we got back into biomed more
heavily and last April started seeing Dr. Megson. I also called up
a local friend of a friend who had recovered her child using
biomedical approaches. Some of you may know her from other groups
(Sharon A.). My son made a fabulous recovery from April to
October. It was nothing short of miraculous (the improvement in his
behavior, health, etc., etc.). However in early Nov. we tried a
round of TD-DMSA and he didn't react well to it. His speech got
slurry and then he got pneumonia and his processing and attention
deficit has gotten worse again over the past few months. We just
had a follow up visit with Dr. Megson and she thinks his yeast is
out of control and his minerals are low. So, we are getting back
onto the Diflucan and extra minerals, starting B-12 nasal spray and
some other new supplements, including HLC Mindlinx as a probiotic.

We put my daughter on Neocate when she was 7 months old and FTT and
in severe GI distress and she made a miraculous turn around in just
two weeks. She has been a non-eater mostly ever since and drinks
her Neocate faithfully (almost four years old). However, starting
just after Christmas this year she is getting a bit of an appetite
back. I think it is due to this zinc cream Dr. Megson prescribed
and also the probiotics and fish oils. As long as she drinks her
formula she remains a pretty typical kids despite some sensory
issues. Last spring her GI specialist at Duke asked me to feed her
dairy and gluten and soy for two weeks prior to an endoscopy as he
wanted to see what her gut looked like eating these foods. I agreed
because I was desperate to find out why she couldn't tolerate these
foods. After five days of being on these foods she starting
becoming autistic in front of my eyes. She lost all self-help
skills, lost the desire to do things she usually enjoyed, developed
horrible repetitive speech and obsessions, horrible tantrums, we
couldn't communicate with her... I think I have some of this on
video and hope to get it all together soon. It was the scariest
thing I had ever experienced in my life, especially since we
had "lost" one child like this before. I still remember my
trembling, crying phone call to her GI specialist saying that we
can't continue feeding her those foods. Of course, I had no idea if
the damage done was permanent. It ended up taking almost two months
to get her back. Scary, scary, scary. Leaves me wondering and
searching for answers about autism and allergies, autism and
breaking down foods, autism and yeast etc.

My kids have had five GI specialists and every test done under the
sun- enzyme levels checked, you name it, it has been done. Nothing
significant has ever been found. We can never believe it. My son
has shown some eosinophils, but not enough to be dx'd as having EE,
EG or EC. My daughter had some "old inflammation in her stomach"
when the guy at Duke scoped her after the dairy/gluten/soy
challenge. Obviously when you have two children who can't tolerate
any foods, have to live on reflux meds, have to live on MOM in order
to produce a stool, obviously something isn't right. We are trying
to decide if seeking another eval by someone like Krigsman would be
worthwhile. Right now we are happy witht what Megson is doing for
us.

So, anyway, I really wanted to get a group started that could serve
as a support group to parents of kids who have "all these gut
issues." When I started chatting with Suzanne M. online a few
months ago I realized that I wasn't alone and we knew that there had
to be others out there who, like us, were dealing with the multiple
food allergies in addition to autism. There certainly seem to be a
ton of kids on the spectrum who have multiple food allergy. I hope
that by sharing notes we can someday find some relief. I pray our
kids get better soon. I know many of you have similar stories. I
am so glad you all are a part of this group and I hope everyone
finds this group to be of comfort to them. I hope soon we can find
the time to share and discuss more here.

I'm sorry this was so long.

Peace,

Jenny in NC