Saturday, January 14, 2012

Please Don't Feed the Dante

 This is Dante many years ago, I think right around when he was 1 1/2.  He was the cutest baby ever.  Dante struggled with hypotonia, severe constipation, and developed eczema on his wrists and along his jaw, but he was making progress.  By the time Dante was 3 he was just about walking, fed himself with utensils, and had at least a dozen words and signs that he used consistently.

A few months after he turned 3, Dante had an autistic regression.  He lost everything.  We had to force feed him baby food, we had to wrap his bed railings with foam because of his headbanging, he stopped walking, talking, and signing.  For several months he had a permanent bruise on his forehead from the headbanging.

In the last 3 years he has come a long way, but is still not talking except for some miscellaneous words, and he has about 3 signs you have to really watch for.  He still has the same hat as in the above photo, but he screams and fights wearing it, due to his sensory issues now.

How does the cutest baby in the world go from that to this?

He still has his loving moments, with those of us in his inner circle.  And as long as we leave him with his iPad or musical toys he is fine. When he comes to the table we are good as long as we provide him with food before he starts throwing everything he sees.
This is not good enough for me.
Am I trying to cure him, or help him live with the autism?  I cannot decide which it is I am doing, but I will keep trying to bring him back into our world.

His dermatologist does not know why he has eczema, but says it is not food related.  I know however that when I completely took him off dairy he almost completely cleared up.  This also helped with his behaviors.  I have now also taken him off citrus fruits, corn, and strawberries in my quest to completely eliminate his itchy outbreaks.

And now we have decided to try also taking Dante off gluten, which is going to be very hard.  We are just testing some theories about the effect of wheat gluten on the gut, and therefore on behaviors.  One thing I do know is that when Dante had his regression three years ago, he went from constipation so bad he need medication--- to the most disgusting smelly down the legs and up his back yuckiness daily.  Three years and he is still like this.  It seems only natural to assume the bowel movements and behaviors are related since they changed simultaneously.

But Dante loves bread and pasta, so I have begun experimenting with gluten free flours.  Unfortunately the least expensive flour is almond flour, and Dante's school is a "nut free" school.  His favorite beverage is almond milk and his favorite snack is bread with peanut butter.  All of which he cannot have for lunch on school days.

This isn't an inexpensive endeavor, either.  The flours in the jars below cost me $45!  Once I know which ones work best for gluten free baking I'll find a way to buy them in larger amounts for less cost.  We have also started him on probiotics and fish oil.  Fresh fruit is also costly, but a healthier boy (and family) will be worth it.
ShanLin and Leif were my happy helpers, although for some reason they decided to rub baking soda on their bellies.  My first experiment was pumpkin muffins, which Dante loved.

We also now have Dante going to private Occupational Therapy once a week for Sensory Therapy, and I am trying to get him to see a gastroenterologist that is also an autism specialist, to see about that link.

I think his treatment is slightly more complicated because Dante is not just a kid with Down Syndrome, or just a kid with Autism.  He is a kid with both.  But we'll keep loving him and doing what we think is best so our boy can reach his maximum potential.

God is good!


Young Christian Woman said...

I hadn't realized that Dante had gone through a regression like that... my nephew Josh's autism was very similar. He went from speaking in nearly complete sentences to not talking at all; his autism is very severe. He has made a little progress now with a good program at his school--his family moved to get him into a better school system--and now he will sit and work, and will sometimes even say he needs to go to the bathroom with a picture chart. I know that his family hasn't had much luck with diet changes, but Josh is also very motivated by food so I'm not sure they were ever able to keep up the diet completely; he got into things he couldn't have.

Justine said...

I also didn't realize that Dante had regressed. That is so interesting (and sad and I'm sure so difficult for you). Did you know that Tim is also autistic? We have had great success with chelation therapy, but I know that some people don't experience that same success. GF may be our next step, but we have seen so much progress with the chelation that I am hoping we won't have to take it. If we do, I might hit you up for info. :)

My daughter also had chronic eczema for 8 years. Last summer we found out it was a dairy allergy. She is finally eczema free. Hope you find the answer for Dante!

KellyL said...

Justine we should definitely swap experiences/stories sometime! I think I did know Tim is autistic, from before you adopted him? Did I ever tell you he is in Amelia's Lifebook from Mother's Choice? They were there together a long time ago!

Justine said...

Tim has never been "offically" diagnosed in HK or here, but his ped says he is "on the spectrum" and the screening for his school placed him at moderate to severe autism (which I don't think is accurate...he is more mild to moderate since the chelation). It must have been suspected in HK, though, because of his almost constant stimming/stereotypical behaviors, although nothing was said about it (stuff was said about his stimming).

I think I did know he was with Amelia, but I had forgotten. I likely have pictures of her in Tim's lifebooks. I'll have to go through and look some time.

I would love to swap stories, especially if you find something that really helps! Let me know how the GF goes.