Didn't happen, although I did learn many things, there was no clear cut explanation to his reactions. It took some time and some adjusting before I even took a look at the gene company's web site. I just couldn't get over the fact that I was sure he would show up as a slow metabolizer.....well he was normal on two strains and actually a rapid metabolizer on another strain called cyp2c19. This gene is apparently in the liver and is responsible for converting about 10% of medication. If we had five hundred dollars, (we don't ) we could have done the tests that are not covered by insurance....This could show us a different scenario, but I don't have the money to gamble. I just have to work with the information that I have. So resigned to the fact that I was wrong, I logged on to the gene company's web site and took a deep breath. They have a nice little set up where you can enter your medications to see if you would potentially have a negative reaction. Most importantly, you enter ALL the medications you are on at any given time and you find out that because of your genetic make up you actually convert medicine in a way that may not be very good. That isn't exactly what I found out, however I do have some information that I did not have before. One thing is I found out my son should not take Plavix without very close monitoring because he is likely to bleed more than the average person. Helpful if he ever needs to take this medicine....right now, not so much.
The other interesting fact I learned was about a combination of medicine that my son was on just after he had surgery to drain the cyst in his brain. It turns out that because of my son's genetic makeup when given Decadron (to decrease swelling after brain surgery) the other medicines he was on became less effective. Well, that is interesting. The most important thing to note about this, is that one of the reasons my son had this surgery is because he was having symptoms of diabetes insipidus. This is not sugar related, it is water related. He drank and drank and drank, so then as you would expect he also went and went and went. We were told that the cyst was likely pushing on his pituitary gland making him think he was thirsty all the time. Flash forward to what we know now....Singulair and Zyrtec both cause polyuria and polydipsia.(drinking too much and going too much) They also cause mood swings, sweating, and poor coordination. So for a short time after the surgery, when my son no longer drank like a fish and pee'd up a storm, we assumed the surgery was a success. When he seemed to be able to walk better and even do that neat little finger test the neurosurgeon had asked of him, we all assumed the surgery was a success.... Alas, he developed many other side effects from the decadron and pain medication he was given during his time in the hospital, and his recovery after. These side effects were mis-interpreted by all, especially his doctors. He was then given more medication to combat these new developments. And the snowball turned into a landslide.
So to recap, the genetic testing showed me that when my son takes decadron it will decrease the effects of the other medication he is on. Wouldn't that lead you to believe that perhaps it also decreased his side effects? It sure makes me think that. I think the short time of remission that we saw was actually just because of this genetic anomaly my son has. Once he was able to rid his body of the decadron and the other medication had time to build back to normal levels we began to see the same old problems rearing their ugly head.
By this time, however like I said, we had discovered all sorts of new problems with our son. I remember saying to the neurosurgeon that my son seemed different. It was like he had sudden onset autism. This is not possible, it just doesn't happen....well back then that is what I thought. Now I have read an article in a medical journal that states a boy who had a brain injury suddenly developed autistic type behaviors. Hmmmmm. This is new. SO you can suddenly develop these symptoms. My son was 5, but he had been realtivley neurotypical before the surgery....I said this time and time again to many many doctors. So did my husband. We just couldn't wrap our head around the diagnosis. Well there really wasn't a diagnosis at first, and some of the things they suggested were more scary than just aspergers. Terms like frontal lobe disorder and other psychiatric terms had me worried that my son would grow up to be a serial killer.
I no longer believe this, however I do still worry. I worry that he lost nine years of his life to a medicated blur. I worry that this is happening to other children because the doctors and caretakers in their life do not have a clue.
Reading about all the different medications that my son was taking makes me angry. I see so many clues that the medicine was the problem. I have also read many things that scare me. One of the medications he took at only one month old, Protopic, has been found to cause cancer and they say they really aren't sure of what this ointment does to the developing immune system. Since they have a link to autism and the immune system, this is just down right infuriating. He used this medication for his eczema off and on from one month until he was about four or five. Wow. It says all over the literature for Protopic that it should not be used long term.....I wonder why they just kept giving it to my son? Isn't four or five years long term? I call it that.
So that is where I feel all of this started. With that one little ointment. Even though there are multiple studies that say Protopic does not cause problems with the immune system, like depleting it, the very same literature will go on to say they aren't really sure what the effects are. Not knowing is unacceptable. Especially if you are slathering this crap all over your baby.
Where do we go from here you may ask.... I am not really sure. We have an appointment with our neurologist. I highly respect this man, and he has done a lot of research for autism. I do not want to loose his support, but what I am about to say to him may make him think I have gone to live at the wacky shack. I want to really really know my stuff before that Thursday appointment. I want to be able to debunk his claims that this just doesn't happen. Of course I want to do all of this with respect and calm quiet resignation. For those of you who know me well, you know this will be a major challenge.
Wish me luck.
No comments:
Post a Comment