I want you all to know how grateful I am for you and your sweet notes!!! I am so blessed to have such amazing people around me!!!! I was told this morning from my very sweet sister in
law how pathetic my last entry sounded. wink! Yes, it was pretty bad I will admit BUT it was fun to see all of your kind responses to a hard night and a discouraging morning. Collin tends to have waves with his illness. Summer is always BAD!!!! Due to the high UV and the heat he has a very hard time with seizures, hair loss, behavior, and regression. So, when Collin has consistent BAD days at unexpected times/ seasons we tend to worry that it means that there has been progression of the illness. Collin has LOTS of "issues" but the biggest are seizures, pain, and the scariest is what is going on in his sweet little brain.
Collin has demyelination in his brain. This has happened over time and with each new MRI we have noticed it's growth "taking over" a new area in his brain. Demyelination is the the loss of the myelin sheath insulating the nerves, and is the hallmark of some diseases. Sufferers of this can also suffer nerve damage if the condition is not diagnosed quickly. Sub-acute combined degeneration of the spinal cord secondary to pernicious anaemia can lead to anything from slight peripheral nerve damage to severe damage to the central nervous system affecting speech, balance and cognitive awareness. When myelin degrades, conduction of signals along the nerve can be impaired or lost and the nerve eventually withers. So, what does that mean you are asking? Well it's not good. At one point in time my sweet little boy had a vocabulary of about six words as well as some signs. All of sudden those words were taken.... it didn't make since. He seemed to making such wonderful progress. Then at the same time we noticed Collin having hearing problems. He had many hearing tests and he always passed with flying colors. So, what was happening with Collin? The lack of myelin was taking of the T2 area of his brain. The communication area. This is what caused Collin to loose his hearing and communication skills. In our last visit to the NIH they noticed that the optic nerves of his left eye were "being taken over" (for lack of a better description) and will most likely cause him to loose all vision in this eye. Then we just wait to see if it will happen in the right. Yes, in other words this part sucks!!!!! There is nothing that can be done to stop it or re-grow the myelin. Research is being done BUT it will be a long time before anything hopeful is found. As I am sure you are all well aware of, the nervous system controls everything. So, as the demyelination progresses and rages war on his sweet little brain it terrifies Jason and I. Any new change in his behavior, seizures, or health make us wonder. Oh, what is going on now? The fear is that some day it could/will effect the nerves that control his organs, effecting the function. I think you all know what I mean and don't choose to say anything else. I just hate to think about it!!!
Now that you have all had a lesson of the day on TTD and understand it a tiny bit more. I hope it explains in some way why I get so worried, nervous, or stressed out when Collin's seizures and pain filled nights become more frequent with out any logical explanation as to why it is happening. Collin has an MRI every 2-3 years. You can not do MRIs to frequent just for the simple fact that it will be hard to notice the difference in images. Well, it is time for an MRI and I am paranoid.... scared.
So, I will conclude this bio-chem lesson with a huge THANK YOU. Thank you for being so concerned about my little man. Thank you for loving me and worrying about my sanity on hard nights. Thank you for your prayers and love. Thank you for listening and just letting me know that you are there during my tired sleep deprived rants. Simply put ... thank you!