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Hello all,

My son Oliver has had tonic clonic seizures since days before he turned four months. It's been an uphill battle ever since. His seizures are idiopathic, and meds don't seem to be working. He is currently on topiramate (60 mg twice a day) and Clonazepam (0.1 mg twice a day slowly increasing to therapeutic dose). He has been weaned off of keppra and phenobarb. We are working on getting him into a cbd trial - has anyone out there have success with cbd???

Apparently I haven't been around long enough to post a link so if you want to see and learn more about Ollie, search "oliver's tonic clonic seizure" on YouTube and you will see a video of him.
 
Hi there, welcome to CWE- it's awesome here :)

There definitely seem to be some encouraging stories about CBD in the media.

Hopefully some other members with first-hand experience of the latest products available can give you some information.

I have tried smoking high CBD-content strains in the past, but I can't really say it reduced my seizures much. I am looking forward to these new CBD medications under trial though.
 
Hello EBM,

Saw that video, it's a tearjerker. Poor Oliver. I hate to see someone so small and helpless in such shape. Bad enough to see a grown person have a seizures. Personally i would hate to give someone so small so much different meds. One never knows how the meds react. I've had meds that increase the intensity of my seizures over time. I have an emergency pill i put under my tongue that supposedly helps stop the seizure when i experience an aura, it's Ativan. But i see he is taking Clonazepam, which is in the same class of meds as Ativan. Have you had 2nd opinions on your sons conditions from other docs? Is the doc a seizure specialist?

How often do the seizures happen? Has he had an MRI? Have the docs seen anything unusual in his brain? Are you keeping a diary of his seizures?

I hope you will get answers to soon!!

Zolt
 
Yes I forgot to mention - he does have Ativan as well. We are finding that his seizures rarely ever stop without the intervention of Ativan. We give it to him as soon as he seizes and even after that, he continues to have one or two more seizures. Almost always a cluster of 3 :( we don't feel the medications are effective at all but neuro says he wants him stable before we wean the topiramate. BUT he has never been stable!!!! The longest he's ever been without a seizure is almost 3 months. I think his seizures are almost always related to being sick - a couple days after the seizure, we will see the runny nose, the cough etc. We are looking into Stiripentol. I know it's a new med and mostly used for people with Dravet, but at this point, we are just wanting the seizures to stop! Breaks my heart every time he seizes and it takes so long for him to regain his skills. He is not yet talking or walking and we feel a lot of it has to do with meds. As soon as he was taking off phenobarb, he started to take a few independent steps! But of course he would seize and it set him back again at least a month. Such a horrible cycle. How long does it normally takes you to feel like yourself again after you have a seizure?
 
Seizures at this point are around every week. It has been a week and a half this time... hope the trend continues. MRS came back mortal with the exception of a bright spot (or maybe it was lacking a bright spot?!?! can't remember it was over a year ago) in the pituitary gland. EEGs also came back normal. And I had been noting seizures, but then I stopped and then I started up again as he is now in a Centre Daycare.
 
hello and welcome to CWE.

I also have tonic-clonic seizures,partial seizures.
 
Hi Oliver's mom,

Oh, it is so challenging for an adult to suffer from seizures, so I cannot imagine taking care of a little one suffering from seizures. I've never tried the CBD, but live in the state that cannabis is now legal, Colorado. I don't know if you've heard of The Charlotte's Web, but it started right here in Colorado specifically for intractable epilepsy. Here is the website about it: https://theroc.us/index.php?option=com_content&view=article&id=57&Itemid=388
 
Yes thanks. We have done lots of research on CBD and Ollie is on the wait list for Charlotte's Web - whenever it becomes available to us in Ontario (Canada). I am able to apply for an access exception here for medical marijuana but I would only be able to purchase the flowers. It is not legal to make the oil yourself and the CBD percentage is obviously not as high as Charlotte's Web and it is higher in THC. And I am not about to make my two year old smoke it!!!! So unfortunate :( I know people are getting the oil somehow but we would like to keep it legal!!! Lol.
 
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