I decided to look back on our experience and share what I would tell myself 5 years ago, knowing what I know now. Although pharmaceuticals have a place and have saved lives, in the majority of cases they are over-prescribed and over-used.
1. Epilepsy is ALWAYS treated with pharmaceuticals (until very recently with a few exceptions). There is no research for un-treated seizures, it just never happened.
2. The first pharmaceutical varies depending on the neuro, in many countries it is Depakote/Depakene (not usually the US). This is valproic acid. It was first given to convulsing patients in the mental hospitals in the early 60's. It managed to help with seizures but no one knew why, and they STILL don't know why. Many bad side effects both short and long term. Interestingly, it is based on valeric acid found in the herb Valerian Root, which is used in many herbal remedies for insomnia, and can be another remedy for seizures when used responsibly and with caution (like any herb, including Cannabis). Most pharmaceuticals are derived from, or based on, herbal remedies, so why not use the herb in the first place?
3. Most pharmaceuticals for epilepsy are the same ones used in treated bi-polar disorders.
4. If one drug does not help, more will be added. A responsible neurologist will not use more than 2 at a time (this was one of the first things our neuro told us which is one reason he is amazing). MANY neurologists are not acting responsibly. I have seen children on multiple and up to 9 medications at the same time. Who in the fuck knows what those are all doing!
5. Once you start meds you will never stop. I was told this 2 years in.
6. Weaning definitely makes the seizures worse. Which then makes you wonder what they are really doing in the first place. This is possibly why doctors assume the drugs are working.
7. If you do not have seizures and take an AED (anti-epileptic drug) you may INDUCE seizures. I was scared to take my kid's meds.
8. Weaning is difficult not only for the seizures but for the emotional reponse . In children this can mean rage, tantrums, behavioral outursts, intense crying, irritability. For adults THE SAME. The longer you are on AED's the longer it will take to get off of them.
9. You can wean and be successful by going much slower than a neuro typically recommends. Some drugs are harder than others and that is different for everyone. The last one is usually the worst.
10. A CANNABIS extract, in it's whole form, (not mixed with additives in a pharmaceutical like Epidiolex) is as effective, if not more, at stopping seizures as a rescue medication. A daily maintenance dose is very small, and often there is no need to "titrate up". In our experience, it is much more effective with no other pharmaceuticals in use. We have had no harsh side effects when used in very small amounts, in fact there are very positive side effects with different strains (both CBD and THC). Many other parents report similar experiences as noted on a several Facebook pages.
11. Cannabinoids actually help nerves communicate and build neuroplasticity.
I realized I have much more to say. So let this be "What I Wish I Would Have Known About Pharmaceuticals" and another post will be about other retrospective musings.