The good news: Jude's brain activity and brain waves have increased since his last study. Thus showing what we have been saying that Jude is not understanding more.
The bad news: We were right about Jude's startle seizures. The neurologist said he is disappointed and worried about Jude's seizure activity. He said the "Startles" are no longer infantile spasms and have developed into full tonic seizures. He told Mike that if Jude could walk he could have to wear a helmet because these seizures are basically equivalent to a grand- mal that would knock a person down. Therefore they are increasing his seizure medication. They do believe it's Jude's tone that is keeping him from sleeping properly. The doctor said the night they studied Jude he got zero REM sleep which isn't good. Therefore he is prescribing the sedative for his night time sleep. It makes me sad Jude needs so much medication. In addition Jude has some sleep apnea and destated several times during the night. They are suggesting that Jude have his tonsils out. They don't want to do this right now since he has been battling a lot lately. They do however suggest this in the future.
So we start the new medication tonight. Jude will go back for blood tests and to see the doctor in June. They may also do another sleep study then.
1 comment:
I hate to hear Jude is having these seizures, especially that type of seizure. But, at least now you know, and you have a plan. The increase in his seizure medication will hopefully help with this, if not, then maybe a different type of medication could be tried. I don't know which ones have already been tried, but with my daughter, we had to try so many different types and dosages before we finally had the right combination for her. She takes lamictal and phenobarbital, and these have stopped her seizures for 6 years. I also do believe, though, her growing older also has something to do with it. I was actually hoping that maybe she had outgrown her seizures, but she did have one grand mal seizure 2 weeks ago(so dissapointing, and so unexpected). Her meds were not changed at that time. She had been up most of the night, and hadn't eaten as much as she normally does. I think sleep is so important. So, do not feel bad about giving Jude something to help him sleep, he needs quality sleep to fight off these seizures. I understand what you are saying though. Today, Ashley's seizure medication makes her a little sleepier than she would normally be, and I feel bad about that at times. In fact, her neurologist wanted to try to wean her off of her phenobarbital to increase her awareness. After failing to be able to do this due to breakthrough grand mal seizures, I said no more attemts to wean the medication, leave it like it is. She is really overall happier and healthier taking the phenobarbital. Although rarely occuring, her seizures are life-threatining and require emergency valium to stop them. I can't risk her having these increase. Sorry so lengthy, I just want you to know you are not alone. So many special needs parents wrestle with the same problem with these seizures. Each child is so different. Hang in there, it just takes time. By the way, Ashley did have her tonsils, uvula, and adenoids removed when she was younger. This did help her. She was having obstructive sleep apnea, particularly any time she had a cold or congestion. The surgery did help her with that.
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