Journal entry by Cara Heppler —
Hello to all,
It appears it's been about a month since my last post, so it seems like a good time to reconnect with you all.
Unfortunately, Jack has had his worst month in six months. He had many seizures the beginning of October. We even went to his neurologist to lower his VNS down from 1.00, thinking that would help, but it did not.
He went two weeks finally, but during that time we started a medication similar to Xanax, except this one is very addicting to the body, to try to calm his anxiety for his upcoming birthday. I had absolutely no idea his body would react so horribly to this medication and then trying to stop the medication, after taking him to the Chicago Bears football game on his birthday, proved to be earth-shattering for him.
So, as we weaned him down, the seizures began Friday night at 11pm and he ended up having FOUR, yes four in 24 hours! After having so many so close and then two during the night last night, I called his neurologist at 3am this morning and thankfully he was on call. He concurred that it was the medication we had put him on and then weaning him off, that caused this turmoil in Jack's brain.
The guilt has eaten at me yet again. I told him how after so many years could I still be getting all of this seizure stuff wrong with Jack?!?
Unfortunately, we had a choice to make. Give him a dose of the medication that caused all this (as it did stop seizures for two weeks) and risk more seizures stopping it again or uping his current seizure medication to the highest dose a person can take, 400mg. We chose the latter.
The VNS has not helped during a seizure quite a few times and it has also helped a little bit these last four seizures. But, it is not helping like it was at first.
I have to be honest, at this point, Jack needs so much more than prayers. He needs a HUGE miracle. Sadly, we just don't see that happening and we have no idea what is going to happen going forward. We are now minute by minute to get through a very short 24 hours without a seizure.
If there are any more struggles or he happens to be admitted, which we almost did in the middle of the night, I will update you all again.
Keep Jack in your thoughts, please, as these next few hours pass.
Cara
It appears it's been about a month since my last post, so it seems like a good time to reconnect with you all.
Unfortunately, Jack has had his worst month in six months. He had many seizures the beginning of October. We even went to his neurologist to lower his VNS down from 1.00, thinking that would help, but it did not.
He went two weeks finally, but during that time we started a medication similar to Xanax, except this one is very addicting to the body, to try to calm his anxiety for his upcoming birthday. I had absolutely no idea his body would react so horribly to this medication and then trying to stop the medication, after taking him to the Chicago Bears football game on his birthday, proved to be earth-shattering for him.
So, as we weaned him down, the seizures began Friday night at 11pm and he ended up having FOUR, yes four in 24 hours! After having so many so close and then two during the night last night, I called his neurologist at 3am this morning and thankfully he was on call. He concurred that it was the medication we had put him on and then weaning him off, that caused this turmoil in Jack's brain.
The guilt has eaten at me yet again. I told him how after so many years could I still be getting all of this seizure stuff wrong with Jack?!?
Unfortunately, we had a choice to make. Give him a dose of the medication that caused all this (as it did stop seizures for two weeks) and risk more seizures stopping it again or uping his current seizure medication to the highest dose a person can take, 400mg. We chose the latter.
The VNS has not helped during a seizure quite a few times and it has also helped a little bit these last four seizures. But, it is not helping like it was at first.
I have to be honest, at this point, Jack needs so much more than prayers. He needs a HUGE miracle. Sadly, we just don't see that happening and we have no idea what is going to happen going forward. We are now minute by minute to get through a very short 24 hours without a seizure.
If there are any more struggles or he happens to be admitted, which we almost did in the middle of the night, I will update you all again.
Keep Jack in your thoughts, please, as these next few hours pass.
Cara
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