Update on CJ6 and TR2- by Sue

CJ6 is doing very well! Between the sucraid, ultrase 18, Pentasa, and gastrocrome his gut is feeling much better! With this medical situation being remedied, he is much more receptive to learning. We have also seen huge expressive language bursts and CJ6 is actually coming up with his own sponanteous novel sentences rather than echolalia. Feeding therapy is also going well. He is eating shrimp, flounder, carrots, pears, broccoli, spinach, blueberries,etc.. All the foods are SCD legal.
Last week, we sprinted up to Boston for a 5 hour visit with a mito doctor at Tufts. The doctor does not feel that CJ6 has a primary mito disorder. Although I am happy to hear this, I still plan to go out to Cleveland because I always like to have a couple of opinions. I don't put much faith in the Boston doctor's opinion because although he is a mito doc, he does not see a lot of autism patients. A lot of doctors view the mitochondrial inefficiency as a secondary mito issue associated with autism. It might be that it is related to malaborption of coenzymes (vitamins) that are essential to the transport of electrons. In Charlie's case, it might be that lead is bound to one of proteins along Complex 1 (of the electron transport chain). It seems that the concept of mito PDD-NOS is very contraversial amoungst the top mito doctors. Basically, we are using this doctor to do some more bloodwork before we go out to Cleveland in June.

I acutally have to switch my attention to the other son, TR2. Within the last serval weeks, his amino acids came back extremely low , despite having been an an elemental formula for the last 19 months. Our doctor said "we see this frequently with children on the spectrum." What? TR2 is not on the spectrum as of yet!!!! He has great eye contact and joint attention. His organic acids also came back suggesting ketosis. These tests suggest malabsorption, but why and what do we do about this? He is already on Pentasa. Perhaps he is not getting it out of the bottle or it is not being activated because his gut is too basic.
TR2 has been requesting chicken all the time, even waking up at 4 am and screaming for it. It is ridiculous that he is requesting it all the time. He is also very cranky and whiny. This could be because he is deficient in many amino acids and knows that chicken is a good source of protein. It can't feel good to be going through ketosis. Then, another thought occurred to me......perhaps he does have eosinophilic esophagitis, a diagnosis that we have not totally ruled out. Then, the probable malabsorption might be related to inflammation from eating complex proteins, such as the chicken and broccoli that we reintroduced back in October. I need to go back up to Boston and see Dr Buie again. Perhaps it is related to a lack of l- glutamine or a vitamin A deficiency. I am going to take Timmy for a bloodwork tomorrow to check his vit a and d levels. After the blood draw, I will start doing Cod Liver Oil on a more religious basis. Thank God that he is not allergic to codfish!!! On another note, TR2 had a totally white poop yesterday and I know that is not good!!!!

I hate worrying about the boys and having to switch from one child to the next. I never seem to get a break from the sense of panick. It just seems to oscillate between the 2 boys.