Full of Gas...Help!

[lurksalot]

Hello,
I am posting here hoping that some of you can give me some insight, direction, etc about my darling son, Emmett (5 years old, ASD & ID).

For the past 10 months Emmett has been battling a severely distended abdomen, it is FULL of gas, think emaciated child. So full, that an ultra sound is inconclusive because the gas prevents the tech from seeing every thing.

His blood work shows that he is pretty nutritionally healthy (despite a very limited diet).

We have had xrays, endoscopies, colonoscopy, ultra sounds and this morning a CT scan. We have ruled out:

Impacted bowel
Celiacs
Crohns
Obstruction

We have taken him entirely off of dairy, he is now on soy milk and yogurt.

We are starting a probiotic (VSL #3 - any tips on where to find this at a bargain price would be greatly appreciated!)

Two peds and the ped GI think probiotics will resolve the gas. However, our primary care ped thinks he may possibly have partial Hirschbrung's Disease. The GI didn't want to run the test today because of too much radiation exposure (CT scan this morning).

We are starting the process for a PED GI second opinion (will likely be Stanford), our GI is overbooked and just doesn't seem to have the time for us.

Emmett is nonverbal and severely cognitively delayed, so we cannot rule out pain, discomfort, etc.

Thanks so much for any input you can give us.


Tiffany

[crl]

Oh I wish I had some advice but I don't. Good luck getting it sorted out. :hug:

Catherine

[mytwosons]

Have you taken him to a DAN! Dr?

He could be sensitive to gluten- the distended stomach is classic symptom.

Check for yeast overgrowth and gut bugs.

[Pepper]

Ditto what Catherine said - I hope you are able to figure things out.

Did you have testing for food allergies? You mentioned taking him off dairy, I wonder if there could be a soy allergy too. I have limited experience with FA, DS2 turned out to have a low-level allergy to milk that took us years to diagnose (he's almost 4 now). His blood test was negative for IgE to milk proteins, but he definately had intestinal distress after having milk products. The weird part was that it would take a couple of days for symptoms to show up, and then they would last for DAYS even though he hadn't had any milk except that one time.

Anyway, my point is, FA aren't always obvious, and it can take a while for their systems to clear out/calm down after an "insult." So if you do look for allergies, give it some time.

Meanwhile, does anything give him some relief from the gas? Can you do yoga with him, especially "wind relieving pose" (I'm sure it must have another name but that's the only one I know, sorry).

[lurksalot]

Thank you so much for your thoughts. I am trying to prioritize what to push with his doctors. He has had some food allergy testing (all negative so far). I am not sure if I should push for more allergy testing. Emmett's diet is VERY limited here it is:

o 6 -8 T of oat flour
o 2-4 T elderberry juice extract
o 2 -4T flax seed oil
o 2c – 2.5 cups of vanilla soy yogurt
o 24 oz of vanilla soy milk

Do you think it is worth it to get a gluten free oat flour? We currently use Bob's Red Mill and I see Amazon carries a gluten free version, I think I will order that just to be safe.

I am also wondering about elderberry juice over-dose (the doctors and nutritionist could not tell us if we were giving too much to Emmett), so we will be adding other berry syrups just to be safe.

I will look into a DAN! doctor. He just eats so little, I am trying to be careful about where we spend our limited financial resources. The probiotic will cost us $200 a month out of pocket and we have decided to bite the bullet and see if it works.

Thanks again!
Tiffany

[sste]

I am confused, are these all the foods he ever eats? Could his diet be causing the problem? I suppose you could eliminate these one by one but I can understand your concern, there is not alot there. Is there some reason for the elderberry -- that seems like a good one to get rid of to start with and give it a few weeks to see if he improvesw.

Is he taking an iron supplement? I can see why he would be with the diet. That can cause gas pain and GI upset.

I would get a second opinion from another peds GI. And ideally a nutritionist if I am reading this correctly. If that doesn't work then def. try alternative providers. That way you are working systematically through.

The disease you mentioned also seems worth ruling out. Is there a genetic or other way of testing for the disease? Radiation is something to be cautious about and only use when needed. If I could resolve it with a gene test and that was remotely affordable I would want to do that.

Good luck!

ETA: Bob's red mill oat flour may be gluten free - - I know Bob's steel cut oatmeal has only the tiniest trace of gluten, it is considered practically speaking gluten-free, and gluten-free people can eat it.

Further ETA: Will he eat regular yogurt (like stonyfield or wallaby with live cultures). A little yogurt everyday is going to contain alot of probiotic. I would ask whoever is rec'ing this what the difference in treatment effect will be between that and yogurt. $200 is alot each month if there is little or no value added.

[lurksalot]

Yes, that is what he eats everyday, it is hard to believe. He is tiny, but still on the charts, his bmi is low, but not dangerously low. We just had his blood work done, and nutritionally he is pretty healthy, it is just his enormous tummy.

Around 18months old he stopped eating. Out of desperation we put him on carnation and milk and eventually my husband was able to get him to start eating his "yogurt surprise". We started by syringing it into him, and now he is spoon fed.

We pulled him off of dairy last summer trying to eliminate all things gas related, he definitely has less gas emitting from his body...his toots would clear a room, so loud and so foul.

After cutting out dairy, he doesn't pass as much gas, though still more than an average person and they are incredibly foul smelling, truly awful.

The probiotic we were using was Culturelle which has 1.5 billion live bacteria per packet, and the new probiotic VSL #3 has 450 billion live bacteria per packet, so at least there is a significant difference and explanation for the cost.

He has had the micro-chromoaray genetic test and the x-linked mr test. He has a tiny deletion and a tiny mutation on two different genes of unknown signifance, the x-linked mr test is relatively new so the data is just not available at this time.

There doesn't seem to be a blood test for Hirschsprung's, it will either be another x-ray or a colonoscopy. When I asked the attending ped how soon he could be exposed to radiation again, she literally shrugged her shoulders...argh!