We officially have issues. Charlie had a follow-up appointment with his DAN doctor on Monday. The results of the OAT (Organic Acid Test) and the stool (sorry to talk about poop, but, hey, this is our world right now) are back. However, as our DAN doctor said, in this field bad news is really good news because it means we have something to work on and hopefully symptoms will improve.
Charlie has yeast. . . and lots of it. He also shows high markers for the Clostridia bacteria. I've been reading about this in all of the biomedical books and articles, and darn if Charlie doesn't meet the prototype of autistic children. These kids have some serious gut issues, most likely resulting from immune deficiencies.
What the heck does yeast or the gut have to do with autism?? That is what I said the first time I heard of this. But, I have learned, everything is connected in our body and there is a direct connection between the gut, the immune system and the brain. This is where biomedical treatments come into play. There is a lot of research on this. Discover magazine published an article that is straightforward and easy to follow, "Understanding Autism, The Answer May Lie in the Gut Not in the Head". You can read the article here. Our DAN doctor also explains the biomedical protocol and his approach very succinctly on his website (here).
Now that we have Charlie's test results back, we are changing some elements of his treatment plan. His current supplements will remain the same, with the exception of a change in his probiotic. In addition, we are also going to start a prescriptive anti-fungal, Diflucan. My first preference was to treat the yeast naturally with various natural anti-fungals, probiotics and digestive enzymes. However, our DAN doctor recommended a prescriptive anti-fungal in this case. I trust his opinion as he also prefers the natural method. He felt, though, that in cases where there is a lot of yeast, natural anti-fungals usually don't get the job done. Charlie will take Diflucan for at least a month (not sure for exactly how long at this point) and we will monitor his liver and kidneys the entire time he is on it. (Diflucan over all is very safe, but for long term use, the liver has to be checked periodically. Our DAN doctor said if the liver enzymes are affected, he'll take Charlie off the Diflucan and the enzymes will return to normal with no harm done.)
When we're done with the Diflucan, we'll likely switch to natural anti-fungals to try to keep the yeast at bay as best we can. I read posts from parents dealing with their children's yeast almost daily. It can be a long and grueling process. Our lovely friend Candida can be quite pesky and resistant and does not give up easily. Not only that, but as the yeast is killed, it often releases toxins which create a die-off effect. Sometimes this effect is quite severe, causing drastic changes in behaviors, aggression, etc. Some children look and act like they are actually drunk. (I won't get into the bodily processes that may be affected. Suffice it to say that the yeast has to come out somehow. I'll let your imagination run with that.) I'm not looking forward to this, but it's actually not a bad sign if it does occur. If Charlie has significant side effects, we'll administer activated charcoal which soaks up the toxins and is then passed in the stool (here I am talking about poop again).
The clostridia is another problem we have to deal with right away. You have to treat yeast and clostridia at the same time. If you only treat one, the other one tends to flourish. We will be giving Charlie a very potent brand of probiotics, Lactobacillus Duo, that will help combat the clostridia. We'll also supplement with colostrum to help fight off infections. Colostrum aids immune and digestive function.
There were some other results that caused some concern, including a low 2-oxoglutaric acid level which may be indicative of high levels of ammonia. Our DAN doctor did a blood draw to check for this. We will supplement alpha ketoglutaric acid to combat this.
Many of the results also suggest Charlie's glutathione production may be low. We are testing blood for this as well. High levels of succinic and glutaric acid were also detected. We'll supplement with riboflavin and CoQ10 for this. Finally, Charlie's tartaric acid was extremely high. The DAN doctor said it was the highest he thinks he has ever seen, which is significant considering he has treated many, many ASD children. His arabinose levels were also very high (the DAN said in the top 3 of any he has ever seen). This is another indicator of yeast.
Adam and I feel like alchemists when we prepare Charlie's supplements every day. It's a bit overwhelming keeping all of this straight at times, although you do get used to it. We keep a checklist on the fridge so we can make sure he gets all of his supplements according to schedule. Once we implement all of the new supplements, Charlie's new supplement schedule looks like this:
Morning:
1 tsp CLO
1 capsule Nu-Thera
1 capsule New Beginnings AntiOxidant formula
1 capsule Lacto Duo
Calcium Supplement
1 capsule alpha ketoglutaric acid
1 capsule of CoQ10
Mid-Morning
1 capsule zinc
1/2 capsule Riboflavin
1 tsp colostrum
Afternoon
1 tsp CLO
1 capsule Nu Thera
1 capsule alpha ketoglutaric acid
1 capsule CoQ10
Evening
1 capsule Lacto Duo
1/2 capsule Riboflavin
1 tsp colostrum
Diflucan
Every 3 days:
Methyl B12 shot (Charlie has received 4 shots so far. We do them at home and it is very easy. We put some numbing cream on first, then you just inject in the buttock. If we do it when Charlie is asleep, he doesn't even wake up.)
As for therapy, Charlie is doing quite well. He is used to his therapists and seems to really enjoy his therapies. His receptive language skills at ABA are quite good and he does what he is asked. He has mastered a few different puzzles and some of the shape sorters. His therapists are starting to sign with him some. They say this often spurs more vocalizations in verbal children. At OT, his therapists report that he is happy to be there, doesn't complain when he is taken to the desk to work on fine motor skills and handles transitions well.
I have noticed that Charlie's social skills need a lot of work. We've been to a couple of birthday parties in the last 2 weeks. He stays on the perimeter and does not seem aware of what the other kids are doing. He does not sit still and has a very poor attention span. At one party, the kids were playing a dodge-ball type game with lots of balls. Charlie was just walking amongst them, completely oblivious that a game was even going on. It was actually kind of funny. It's like he is doing his own thing and really could care less what the other kids are doing. Same thing in the tae kwon do classes we tried. I think it's a little too soon for some of these activities for Charlie, but I feel confident that we will get there.
Charlie's verbalization has improved somewhat. He has made numerous requests to go swimming. He also told Adam "not yet" when he was told to put on his pajamas. Tonight, I was having a conversation with Charlie about how big boys use the potty. I asked him "do you understand?" He looked right at me and said, "I understand." I know you do, buddy.
Wednesday, June 24, 2009
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