Beth

[Guest guest]

Hi Beth,

wow - very interesting about the intestinal permeability alteration

theorized to cause autism in some children. (or did I make a leap there??)

Zachary, my 7 yr. old, has profound GI problems - top to bottom and is IV

dependent with tolerance of small, (20% of his calories) feeds into his

small intestine.

I might have mentioned that he carried the diagnosis of autism spectrum

disorder from the age of 18 months until recently. And it truly was an

accurate description of Zach's behavior. Our neurologist and I are

determined to solve this mystery of how this child could be worse medically

and yet " cured " from autism...(not sure we will actually solve it though).

But at any rate your post gave me food for thought.

Zachary could take 50-70% of his calories by mouth until last march 2. the

rest went into his G tube. he ate everything that any typical child his

age would have eaten although struggled with daily vomiting episodes. We

had to increase his g tube feeds to 50% when he was 5.5 and interestingly

noticed an improvement in his autism although still present. Last March he

was still considered to have high functioning autism when he went into the

hospital. At that time he lost all GI function and became TPN dependent,

(nothing into the intestine). By the time he was released in July - there

was no autism to see - as hard as we looked.

Not that I would recommend that all children be put on IV only to cure

their autism and not even sure this makes any sense...just something to

think about and see f the neuro laughs or not at me when I tell him this.

Anne

PS RE: lactic acid -

I assume you sued the lab at Children's - they are generally very good

about not using a tourniquet and putting on ice right away. Do you

remember if they did for Clayton? Everyone has their own opinion but I

would repeat it if it was me. If it is normal it does not rule out the one

that you got - as

Jeannine said a non metabolic child should not have a LA of 50 after 24 hrs

of little nutrition. But it still might be helpful to know if it is a

chronic thing he struggles with or is it a constant. But that's me - I

like to know labs even if there is nothing to be done.

As

far as the glucose - no, it is not bad across the board for all those with

Mito. And it can be bad in degrees - in my 2 kids it is poison to Sam and

less so to Zachary, although still not the best. Sometimes the doctors

order a glucose challenge test where they give the child something high in

glucose and then after several hours they draw a LA level - not sure of the

specifics but I believe that some of the docs at Children's would know how

to do it.