Matthew's has been getting better and better after his surgery. His is now pushing a little in his walker and using his legs more. His hips are still sore where the plates are. The thing that's bothering him now is the tonic siezures. These are like the myoclonic jerks but with a new twist at the end of the jerks. Here's my description of his siezure.
Matthew will suddenly jerk and thrust both arms straight out and legs straight out and bend over at the waist and drop his head. He'll be very stiff and he'll hold it for about 5-10 seconds. When he finally relaxes, he is very, very, limp. Then his eyes will look glassy and he'll have anywhere from 2-4 quick jolts, like a "shock".
After that he smacks his lips like something is in his mouth. Sometimes instead of the seizures, he'll have the "shivers". Most of the time these happen whenever he wakes up but lately they have been happening during the day. He had three today.
Our neurologist has him on phenylbarbitol, Keppra, Lamictal, Kolonopin. The first med was Phenylbarb for the myoclonics that never fully went away. At age two, he went in for the same jerks that were getting worse and was put on topomax. He had a "big" siezure like the ones he's having now but a lot worse. Next time he was still having the jerks but they had slowed down again. I video taped so we didn't have to go into the hospital this time, same siezures just getting worse, we weaned the topomax and added lamictal, the lamictal did absolutely nothing except cause him to be more miserable and tired. Next we added Keppra the seemed to slow them down again. I waiting for the neuro to get him off of the Lamictal. I don't like the side effects. ON the internet it says do not use with Phenylbarbitol and it also slows the production of red blood cells. They carry oxygen to the brain. We have increased the lamictal since he started having the bad seizures again. So far no change, just getting worse. After reading what I just typed, I see a steady incline in his seizure activity. A little worse every year. Our neuro just says, well, I told you that is to be expected as he gets olders considering all of his brain malformations. I know that but all this junk he's on isn't working, why can't I get him off of some of the siezure meds? If he doesn't do it soon, I will be going to another neurologist... As a matter of fact, I think I'll call tomorrow.
Matthew is getting weaker and weaker. He doesn't want to hold his head up long enough to stand in his stander. All he wants is for me to hold him
Some people say their is no proof that siezures cause more brain damage but I can see Matthew regressing with my own eyes.
He will be three in a few weeks and I hope and pray we don't end up in the hospital with a grand mal seizure.
I know Matthew has a lot wrong with him but I just want him to at least play like he used to and be "content" for a little while in his stander or walker or swing. He acts like he's miserable and I don't like it that way. He has enough wrong with him without those nasty siezures. I am looking into other options and most like I'll have to take it upon myself to get him off those meds and "start over". Makes no sense to KNOCK HIM OUT all the time.. what kind of life is that. I won't settle for what's going on now because I know there's got to be more we can do to defeat these seizures!!!!!
So SIEZURES GO AWAY!!!!!!!!!!!!!!!!!!!!!!!!!!
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