katiebug74

Thank you for your reply! :-) Robbie's seizures are about 30-45minutes long. They are grand mal. He loses control over bowel and bladder, he vomits, and his whole body is involved. His eye brows twitch, his eyes go back and forth. He is usually post ictal for hours and hours. They don't happen very often, when he has grown and his blood level is low, or his is sick. ( his pediatrician and I have his blood taken about every 6-8 wks to keep it at level since he is a growning boy.) It turns out when we first started the change over to Depakote he was in the beginning phase of mono. I told his doctor that since this virus was in his system why couldn't that provoke a seizure? He wouldn't listen and treated me like I was dumb. So we started this Depakote sprinkles. I told you all the symptoms he has had. No one would listen, they got a level to make me stop and guess what. His liver enzymes were elevated. Then the doctor says I don't think he should be on this anymore. So he wanted to switch us to Lamictal. I said well we know the Carbatrol was working until he had mono. He said, but he was not symptomatic yet. And I said true, but the virus is still there and holds the capacity to cause the same problem as a symptomatic virus. I mean, and I don't mean to offend anyone, but if someone had aids, but they weren't symptomatic, would you still use the same precautions? The answer is yes. Because the same possiblilty is there. So after a long drawn out fight, Robbie is to start Carbatrol again. And we will see how that goes. I was so scared. My Robbie was not himself at all. And I know how bad it can get if the liver enzymes get to high. And I wanted something to not inhibit his learning like the phenobarbital did. That stuff is awful. He is able to write his name, first and last, he does so much. His biggest limitation is his vision. He is VERY smart. But that is another fight I have. :-) It is like they don't get that the biggest goal is to control as best we can and let this kid do what he is able to do. Robbie is amazing, everything he does is such a miracle. I just can't let them put a limit on it. I made my own seizure monitor for him. His seizures take place when he is sleeping. So, I got a bedwetting monitor that beeps for under his sheet then a baby monitor under his bed by the alarm and the reciever in my room on the table by my head. So I hear them when they happen,I am a light sleeper and I hear if he breathes funny. :-) The seizures scare me, and I don't want him to have them if he doesn't have to, but, I think dosing him heavy for when he is sick, which is not very often at all, is silly. If he is sick , I know to watch for them, and if we need to we can up the meds temporarily, or have him sleep with me, or I sleep with him. I am glad someone else believes as I do. My husband and I were feeling a little alone. But I did get him to call in an order for therapy this summer for his fine motor skills. At least that wasn't too hard. I learned my lesson on the meds. I had was on hormones for a number of hormone related issues. I took one hormone, at one point they had me at 14 pills a day for the side effects. But no one in my town would give me a hysterectomy, they say I was too young. So I went out of town, got a hysterectomy and now I only take my pill for reflux. I am better than I have been in years,I was having migraines for 2 wks at a time from the hormones.

Now I am on the hunt for a very good Pediatric Neurologist and a Neuro-Opthomologist in Illinois or Iowa if anyone knows any! :-)

Thank you so much everyone. God Bless You All!