The last time that I posted about his progress was on January 9, 2009. A great deal has happened since that time.
The majority of my son's genetic testing has come back - all normal. There was one sample that was supposed to be sent out to a special lab by the name of Signature Genomic Laboratories, but it was never sent (CGH Microarray test). It turned out to be an error on the hospital lab's behalf. There were multiple vials being sent to all different labs and it was thankfully an oversight. I have learned that this particular laboratory can change its policy at any time, and unless they hear from you, they are given permission to use your DNA for scientific research. With all of the questionable things going on with our DNA and science (cloning is one), I've decided against doing any further genetic testing. It is a waste of time in my opinion. What really upset me more than anything is that the pediatric neurologist didn't even do the appropriate thyroid testing on my son either! He only performed a TSH count - which is pretty uninformative. Even then, his count was 2.3 which could very well indicate a problem.
I recently met with a trusted chiropractor. He evaluated my son and reassured me that everything looked great. He did have a slight misalignment in his neck which was adjusted. It is no surprise now that my son was having such difficulty nodding his head "yes". Once adjusted, he was able to move his head up and down with such ease.
My son also met the same Naturopath that I have been seeing. He reviewed his records, ordered the appropriate thyroid testing (along with some other blood work), and also indicated that he would like to see a stool sample done to test for anything abnormal. We meet back with him in about a month when the results come in. He did agree with the DAN doctor about all of the supplements that I have my son on with the exception of the multivitamin. That put my mind at ease - that we are on the right track for the most part. Since switching my son to the multivitamin that the Naturopath recommended, his color has returned. I am now believing that he was anemic all this time!
Two weeks ago my son met with a team of developmental experts at a medical teaching facility. The diagnosis handed down was PDD-NOS. After viewing their findings though, I am almost convinced that my son's case is similar to Hannah Poling's. I believe that he is suffering from an Oxidative Phosphorylation Disorder - aka Mitrochondrial Disease. Hannah Poling's metabolic disorder was worsened by her vaccines. She also won her case in court. Health and Human Services admitted that the vaccines were to blame for her regression. I blame my son's vaccines also. I am also convinced beyond a shadow of a doubt that if I kept vaccinating him past the age of 6 months, he would be severely Autistic.
Last week, we were visited by my son's weekly therapist from Early Intervention. She brought along a licensed physical therapist to perform an evaluation on him. It was quite clear that my son is a very shallow breather and not using the appropriate amount of oxygen. It could be why he is not speaking appropriately, but it is too soon to tell though. She did give me some exercises to do with him to try to get him to fill his lungs better with air.
During the evaluation though, my son was sitting at the table playing with Play-Dough. All of a sudden he froze and his eyes "fluttered" a bit. He then stared straight ahead and none of us could snap him out of it. After about 10 seconds, he resumed playing with the Play-Dough as if nothing ever happened. They both looked at me alarmed and said, "Has this ever happened before?" Of course, I told them that it hadn't and that it was quite scary to witness. They advised me to take him in for an EEG to see if he is having seizures. I called that day and made an appointment for the very next week.....which brought us to today.
My husband took the day off from work and we arrived at my son's appointment early. When we were greeted by the technician, she asked if we were told to deprive my son of sleep before bringing him. We were not told anything of the sort I told her. She rolled her eyes in disgust and proceeded to tell us that the last part of the test involves the child sleeping. So, we wasted 4 hours of driving and another 2 hours at the hospital because our son refused to go to sleep. I actually made him go to bed earlier the night before thinking that he NEEDED his sleep for this test to go smoothly!!
As she was removing the electrodes off his head, his right hand began twitching. This was not the first time that I had seen him twitch. He had twitched all over a few months ago after giving him a bentonite clay bath (detox agent for heavy metals). After the doctor heard about his reaction, he told me to switch to Epsom Salt baths. When the technician witnessed the twitching, she said, "That concerns me". She then told me that children may not "appear" to be having seizures, but it then shows up during sleeping episodes.
After my husband and I loaded him into the car and began driving, I did notice that my son was twitching again. He was probably doing it all along and neither of us ever noticed. Both times it occurred today though, was when he was tired and ready to sleep. Going back to the seizure episode the week prior, I did read that allergies may exacerbate an underlying seizure disorder. Well, Play-Dough has gluten in it. He has been off gluten since October 17, 2008. It is possible that he was reacting to it.
So, I will have to wait another month to meet with the neurologist. Hopefully, we will be able to take some equipment home and just do the EEG test ourselves while he is sleeping.