Saturday, March 03, 2007

What a week.

What a time this has been, since my last entry. It’s been awhile because I’ve been overwhelmed. T is on a completely NEW diet – GFCF wasn’t working for him. Also, the allergy test results (IgE & IgG) came back, and life just got a lot harder. Okay, I am keeping perspective: his life isn’t in danger, he doesn’t have a life-threatening illness, we have a house that is intact and not underwater, enough food to eat, etc…BUT…

The prescribed diet is now the Specific Carbohydrate Diet, or SCD. In a nutshell (no pun intended) he can now only eat meat, nuts, fruits & vegetables. Eggs and some dairy are allowed on this diet, but his allergy test results…sigh…show reactions to ALL dairy, eggs, wheat, rice, peanuts, almonds, and more. These are food sensitivities, not life-threatening allergies, but nonetheless, these foods must be removed from his diet; some for 2-3 months, some for 6 months, maybe some indefinitely.

So now we are doing the SCD w/out dairy or eggs. Very, very interesting.

Why are we doing this? Because when the Organic Acid Test (OAT) results came back, they showed that he had a bacterial infection and yeast overgrowth in the intestines. If you’ve got yeast overgrowth in the intestines then mucus builds up in there, and food can’t be absorbed properly. Food essentially rots or ferments in there, causing the bacterial infection. So you’ve got all sorts of infected gunk in there, the intestines aren’t working properly, and undigested proteins leak out of the gut. There is plenty of research out there that shows that there is a definite brain-gut relationship: if the gut isn’t healthy, then the body doesn’t get the nutrients it needs, therefore the brain isn’t getting what it needs, and (the theory goes) this results in brain dysfunction. Layman’s terms; my apologies to anyone reading this that is an expert in all this.

The science behind this makes more sense to me, I have to admit. We knew about the yeast overgrowth while he was on the GFCF diet, but it didn’t make sense to me that yeast or yeast-producing foods were allowed on the diet. How are we getting rid of yeast if we’re feeding it? (Treating it very well, hah hah hah.)

SCD gets rid of the yeast long term by depleting it – or not feeding it. So that means no sugar, no starchy foods (breads, grains, potatoes, etc.) but instead eating proteins and produce. It is a very healthy diet, but it will be a huge learning curve for me. Most everything needs to be baked from scratch. I said to Rob today that as I walked through the grocery today, I was struck by the fact that our T couldn’t eat most of the food in that store. Even our beloved turkey, chicken & ham lunchmeats, by Boarshead, as pure and wonderful as they are, have sugar in them. Who knew? It felt very odd, and yet I felt like I was rising above it all, walking by and knowing that “that isn’t good for my son.”

That is this week.

Last week, we had to start this SCD diet, which was pretty intense. Also, the med we were giving him for the bacterial infection (metronitazole, or Flagyl) was making him sick…only we weren’t aware. Turns out it’s notorious for causing nausea, but we didn’t have that information. Also, it’s kinda hard to know if your kid is sick if he can’t say “mama, my tummy hurts.” All I knew was that it was taking me anywhere from 20-45 minutes three times a day to get this medicine in him, and that he was not himself. (Yes, that meant that up to 2 ¼ hours each day I was sitting in front of him with a medicine dropper or spoonful of applesauce with the metro mixed in.) He threw up one of the first times I gave it to him, but that was the first time I gave it to him first thing in the morning. The nurse (she’s not so snippy with me now, by the way) advised me that I should split up the dose and mix with food, but several days later he ejected it again. Only then did I realize that the reason he didn’t want to take the medicine wasn’t because it made him sick that one time, but that it was making him nauseated ALL THE TIME.

So we’re on a new med now which he seems to be tolerating much better. Boy oh boy, he’s stimming much, much more, but (those with weak stomachs turn away) his stools are actually formed for the first time in months. GFCF made his BM’s almost diarrhea-like. And my sister, my true guiding light through all of this, said that some of the other, um, characteristics of the stools indicate that he is absorbing food well, which is good good good. Rob & I are hoping that as we continue with this med and then move on to the yeast meds that the stimming will subside. Today he stood in front of his chest of drawers, and rubbed his hands over them and grunted and was grinding his teeth. That is usually saved for the heating vents or fans.

*Sigh.* I feel like so much of my time I’m suspended between two realities…joy over progress and deep concern for the regressions.

What keeps me going with this is the glimmer of hope. This may help him. Yes, it crosses the line of mainline medical approval – most docs brush aside the DAN movement and most of the biomedical interventions. But why is it that the kids that I see that have made the most progress are the kids doing the DAN protocol and intense home therapies like ABA or Verbal Behavior? How can the blood, urine and stool test results showing these infections be ignored?

Keeping the faith. Moving forward. “Just keep swimming, just keep swimming, just keep swimming…”


Anonymous said...

These sites may be helpful. They have information on the SCD and autism:
(has a large mailing list)
(lots of experience with SCD/autism)
(for fun)

Good luck!

(I signed up for google "alerts" re: the SCD and autism)

tommysmommy said...

Thank you, Raman. I'll take all the help I can get!

Anonymous said...

Just keep swimming - and know we are swimmming right beside you.
In awe of your strength - loving you from Portland. Pam

EA said...

Interesting info. lovie. I'll be curiously awaiting news as the weeks unfold.