Today I am going to write 2 entries...one with as the title says just the facts of what we've learned. In another entry I will talk about my mental process.
So yesterday we began our day with an appointment with the Gastroenterologist (say that 10 times fast). I really liked him. He was down to earth and honest. He also did take the time to hear out my concerns. He first looked at Jasz' skin. He told me that it did not appear to be an allergy reaction. He believes it's something along the lines of an overactive gland causing the follicles to clog. That's not to say that the condition can't be aggravated by an allergy but an allergy isn't causing it. Jasz does not have a gluten intolerance....yeah for that!!! The milk allergy test was inconclusive. So he ordered a full panel allergy test...more blood work!!
The next thing he asked me about was Jasz bowel movements. Well, they have always been irregular. It has been counteracted a little by the carnitine supplement as it has the opposite effect. So he sent me to get a scan of Jasz' abdomen. He wanted to see what was going on with his colon and kidney's and bladder. Well, he had the scan on his computer before I walked back to his office and it showed that Jasz is impacted..as he said, "it's wall to wall in there!!" So he is putting him on a low level of laxative until further notice. He said that Carnatine is like Holy Water...you almost can't hurt anyone with it. But he would rather him be on a laxative than rely on adjusting Carnitine levels to counteract his issue. He said the colon issue is a symptom of the low muscle tone. The colon is a muscle and it also is weak...it can't push everything out.
He did have a concern given that he is a normal picky 19 month old and has problems chewing and he is impacted which often makes kids not eat well, that he may not be getting adequate nutrition. So he suggested I grind up a chewable vitamin and put it in his food. He also said it's probably good to have him off of milk, cheese and soy so he gave me a prescription replacement. He called it a power shake. He is only supposed to have it once a day, but is designed for kids with allergies and other intestinal issues. Phew that was a mouthful.
From there we headed over to see Dr. Carter..the neurologist. She was all smiles. The blood work came back and though all the individual tests came back "within normal range" she is looking at each piece as a clue to the bigger puzzle. She said you can't really look at them separately you have to look at it all together. So yes they were all withing normal range, but none were down the middle. Every single read out was either the highest end of normal or the lowest end of normal. She said that is not normal. So basically as I understand it what all these off kilter results mean is that Jasz has a problem in the cellular reproduction cycle...specifically of his muscle cells. The way that all the levels were off indicate that that cycle is getting interrupted. So boiled down yes he does have a carnatine deficiency but he also has some other things going on. He needs another supplement(I can't remember the name of it though). But since she agreed with the GE Dr. that he needs a vitamin, she prescribed that. She did a prescription because I guess Jasz is low on antioxidants so she wanted extra vitamin E and no iron. She also felt drops would be more manageable. She doesn't want to add too many new things at once so we will add the next supplement next time.
As for all the issues he could have this was the best possible answer. It is something that we can mostly overcome with specific supplements. I asked about the prognosis and was told it's very good. He will always have to be on supplements. He will always have to have good nutrition, which means we will likely have to work with a nutritionist throughout his growing up years as his bodies needs change. He will always have to maintain a good exercise regime. We can never allow him to get overweight. His muscles can't compensate for extra fat. He would very quickly become a person riding in a hoverround and that would compound the issue. She does not think he will "ever be an Olympic athlete"...well we'll see what he says about that one.
So, all in all it means a family lifestyle change. I wouldn't say we are horrible, but I do think we can be better. John and I have been monitoring our own intake for a little over a month now and results can already be seen. So, it just means we ourselves have to fight our lazy bug so we can teach our son that exercise can be fun and it should be a part of everyday life. After all, God created this beautiful world...we should go out and enjoy it together. Maybe we'll all take up swimming...or something like that!!