intractable myoclonic seizures / medical marijuina

[Deb179]

Hi

Not sure where to begin, but want to try to keep this short.
My daughter Jenna, was born normal, within hours of her 2nd DPT baby shot she went into status myoclonic seizures that nearly took her life.
She was diagnosed with infantile spasms.
No one would admit her seizures could have been linked to this shot, yet she has since been exempt from all future shots.  The pertussis was mentioned to me

We tried every available drug at the time to try to gain control ( this was 16 years ago ).  
Each drug brought on a new type of seizure...our last resort was the ketogenic diet, which broke the status, when jen was about 2 years old.
jenna was left with brain damage.  
She was put on depokote along with the diet which seemed to be the best control for jen for many years.
All her life she still had brief myoclonic eye flutters, rolls, hard blinks, the body jerks ended.
My main concern was to not let them cluster for fear of status again.
Over the years...14 to be exact, jenna has been left to cluster all day at school.  The clusters happen a few times a year and usually brought on by illness.  
I always use diazepam to break her clusters within 5 minutes of onset.

The school and leaving her to cluster is a whole other story, complete neglect.
I have since pulled jen from school to keep her safe, but her myoclonics have definitely increased,  
Not sure if its due to the negligence of the school or her age.  
She also started having grand mals approx. 5 years ago.
I Also question if these grand mals weren't brought on by the neglected myoclonic clusters.

Life has been a whirlwind.

Jens myoclonics are now happening 100s if not 1000s of times a day.  
As of now, her neuro is giving me a bit of time to try to settle them, Im beginning to become very nervous again, as I know the next step will be experimenting with new drugs.  
I am aware there are many new anti convulsive drugs now  also jenna is 16 years older than when I last faced that horrifying ordeal .  
I went alternative many years ago with the diet...it proved to be the only thing that saved her life.  
The diet was considered very dangerous. I had to fight hard to get someone to help me.  
There weren't enough "studies" done on it at the time.  
Im once again faced with very few options.  
Ive done some research on medical marijuana and am told by others that have children like my Jen...that it has saved their lives.  
I live in NY...it has just been legalized here...but it is expected to not be much movement with it for 18 months.  
I may not have that much time to wait.
I have spoken to jens  neuro about it and as of now faced with the same words " not enough study"
Im seriously considering  moving to Michigan as I know they have clinics there for this purpose.

Anyways ...Hope someone might be able to give me a bit of in sight.  Feeling very alone and overwhelmed right now.

Thank You in advance

[Deb179]

Thank You for your response :)
just wondering if anyone knew of someone, that has tried  
Docs in NY still not good with it.
She has a GREAT neuro team, they seem to want to stick to the tried and true.  Sometimes, there's just not enough time.
Was also reading the thread relating to marijuana and seizures...Looks like it could go either way
Once again...
Thank You

[teddybears4ever2]

I really wish I knew more so I could help you. We are not doctors here just people who have knowledge.  I would suggest that if you are worried about to her to maybe see another doctor and see what he/she says.  I'm sorry to hear that you have had to go through this with your daughter.  Please come back and update us on how your daughter is doing.