Hi there everyone,
Does anyone have any experiences with Phenobarbitol that they could share with us? Good, Bad or Anything...
We are going to be tryisng Ashley 3.5 yrs old on it while taking her off of Clonazepam, She is also on the Keto diet and Dylantin. She has many different seizures.
Please let us know any thoughts or stories you may have.
Thanks
Cindy Bosma
Phenobarb
I wish I had some direct experience with PB to share with you. I don't. The one thing I've heard consistently is that there's often a pronounced sedative effect initially -- gets better within a couple of weeks.
The phenobarb is just temporary for Ashley while you're weaning her off Clonazepam? Or is it supposed to replace the C?
Phenobarb
Hi Annie,
Thanks for your response. We are trying the PB with the hopes that it will help with her seizures enough to keep her on it as well as make it easier to get her off of Clonazepam. She has a really rough time coming off of it bad withdrawl. If it were to work at controlling more seizures than her current meds we would be very happy too!!!
Cindy
Phenobarbital was the First
Phenobarbital was the first medication my daughter was on. She was 18 months when they put her on it, they took her off at 3 yrs old. It worked well for her (no seizures) but it delayed her development. They took her off at 3yrs old because of the delays. It also made her tired, but any seizure medications they put her on made her tired. It was still working well when they took her off of it. Hope this helps.
Phenobarbital was the first
Hi Marian,
Thanks for your response. We are hoping that it will work for Ashley at controlling seizures. It would be great for her brain to have a little rest. Hopefully we will not find that it makes her too tired but currently with the meds she is on and the amount of large seizures she is having she is quite tired anyways! This gives us some hope that this may help our little princess!!
Cindy
I hope PB works for you, too!
Hi Cindy --
Michaela was on PB briefly when she first started having seizures. It's been a number of years now, so the only thing I remember is that she was very sleepy. But at the time, I thought sleepy was WAY better than the huge amounts of seizures she was having. I haven't yet seen a med that didn't make her dopey...
I hope PB works for you too!
Thanks Jenni,
I hear you. Sleepy is so much better than the constant seizures. How is Michaela's seizures now? Are they under control? I guess time will tell if the PB will help our little princess Ashley!
Thanks again!
PB
Mary was first on Topamax. She became hyperactive and was so into her environment - but it deprived her of sleep and gave her horrific tantrums. PB zonked her out immediately and we saw a decline in everything - everything ( her all time low was to lay down and stare ). For a time we thought mental retardation was in the radar - our neuro disagreed.
Mary slowly came back to us. she has been on PB for 5 months now. she is 3 years old. Mary can walk again and we are happy where she is at. But Mary is on the max dose and the EEG still records some seizures so we are doing an MRI two days from now.
Our neuro informed us of several side effects - the most worrisome is the minus IQ points after two years of PB. The other is hyperactivity in children. But in our case, Mary goes to sleep within the hour of her meds. And as to the minus IQ points (7 they say) this becomes crucial if the patient is mentaly retarded. In any case, PB works for Mary now, - better than seeing her with the seizures and headaches or the wailing tantrums on Topamax.
My wife and I will pray for you.
Rene and Marilen Estaniel