Monday, 05 September 2011

• Dealing with a weak Immune System

  

  After my son had been diagnosed and we were involved in a group therapy program, the reality finally hit me. For the first part of the therapy the kids sang and learned sign language because many of them had speech issues. My son sat on my lap while singing and doing the hand signs. During this time I noticed how perfectly he fit into this group of kids with similar developmental issues. It was like I hit a brick wall suddenly. He was definitely not misdiagnosed. He would get off my lap and wander away from the group.

  He did learn a lot of sign language. I think he knew just about every animal that was used in any childrens' song. At this point, in the very beginning, he still had meltdowns because the diet had just begun. To people who suggest this was merely a developmental milestone, I say "no way". It was just too closely coincidental, time-wise for this to be true. We would try to reintroduce gluten throughout his growth and the negative effects would manifest once again.

  So I finally got a break during the day to go to the grocery store or just have some time on my own when this therapy started. Cornerstone Therapy in Huntington Beach, CA was truly a God-send for my family. The overstimulation of the grocery store was too much for my son. Throwing himself out of the grocery cart was something that would "almost" happen from time to time. The screaming would also have other shocked parents sending me evil looking glances as if I was torturing my son or my son did not belong out in public.

  Another difficult aspect of being the parent of a child with special needs is how they just don't fit in with other children as playmates. It wasn't my son that was bothered by not fitting in, it was me who had the problem with it. It didn't bother him at all. He was not aware nor had any inkling of thinking that way or being concerned with fitting in. We would be with a playgroup or just with relatives and their kids and there was so obviously a difference. The other children noticed it but did not know the cause. This aspect made me not be so motivated to get together with families of typical children but we did because we knew that was the best thing for our son. I could not wait until it was time to go home, though and to be honest, I felt a bit guilty for feeling that way.

  After the diagnosis of Carnitine deficiency, his words started coming. They were very immature for his age but he was able to express himself very well after about 6 months of being on Carnitine. This wasn't the kind of carnitine you find in the healthfood store. This was prescription Carnitine from a doctor whose specialty this was.

  It's kind of an awesome story of how we came to start seeing this doctor at UCI Medical Center in California. A friend of my brother's wife was an internationally reknowned neurosurgeon. He was very well-connected in the area and out. He contacted a doctor that had been on sebatical for a long time. The doctor had a giant waiting list but agreed to squeeze us in front because our situation was something he was conducting a very groundbreaking research study in. My son seemed to have all the symptoms to be in the study such as. the sutures in his skull not healing together propertly which caused his head to be flat in back, carnitine deficiency and autism. We continued a long-standing every few months apointment with this doctor. If it hadn't been for the other doctor, I don't know how much we would know at this point.

  Our concern was not JUST with the autism but the seeming lack of immunity he had. He caught every illness that went on in school. His ears were always filled with fluid and tubes seemed to fall out before the fluid drained. He was on all kinds of breathing assistance such as steroid inhalers, vaporizers and things I can't remember what to call them. One October he was very sick. His fever spiked at 104 with a cough. The doctor called the ER to tell them we were coming. I had to call and get a sitter for my daughter. She was about 6-yr old at the time. So my husband, son and I went to the ER. They flushed him with fluids, took his blood and sent him home. OMG!!!!! I stayed up all night with my son to be sure he was still breathing. His breaths were so shallow! His lips were purplish. In the morning I called his pediatrician's office for a follow-up check and could not get in to see either of the two my son had seen before but was desperate so I agreed to see another one. Upon my arrival into the waiting area the front desk people saw the blue face that was on my shoulder and got me right into the pediatrician. He said either he was going to call me an ambulance for my son or I was going to drive him to UCI Hospital. He would let them know we were coming.

  Just to give you some background, this was 4:00 southern California time. I was going to need to go as fast as I could on the 55 freeway. I prayed so hard that the traffic would open up for me and I could go as fast as I felt safe going because my son's life counted on it! My prayers were answered!! This was an amazing thing! God is Good!

   

   

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