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Living with Autism

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February 16, 2015

Autism and Epilepsy: Only Time Will Tell

Award Winning Non-Fiction Blogs - BlogCatalog Blog DirectoryAs if life with severe autism (for which there is still no cure) and self-injurious behavior (for which there is still no cure) isn’t enough stress and worry, add to the mix recurrent seizures.


Witnessing your autistic child go into a tonic-clonic seizure is something you never forget. Never get used to seeing.

Eyes twitch. Limbs shake. Agonal respiration. Always fear and panic. A sense of helplessness and hurt. You just want it to stop. 

You want to fix this action-potential-sodium-channel gone awry. You want to save your autistic child from seizures.

You can make most seizures stop--with an IM injection of Ativan or PR administration of Valium. You can protect your child from falls. You can help them breath, by applying oxygen. 

This doesn’t fix the problem. This doesn’t cure epilepsy. Seizures will happen again, even when there is a lull. You never know when they will strike. You live in constant worry. In the evenings and early mornings, you are tormented by a sudden twitch, fluttering of the eyes or change in respiration.

You dutifully make another neurologist appointment. There is talk of new meds. Re-introduction of old meds. Adding and subtracting meds. You can never be sure. You’ve become a regular at the pharmacy.

You religiously read medical research on seizures and epilepsy until your own eyes twitch. Every study mentions “further research needed.” Not one says, “No further studies required….We found a cure.” 

That’s because, silly goose, there is no money made in curing epilepsy.

Not with 65 million people worldwide currently suffering with epilepsy. There’s a lot bucks to be made. Why cure. No way. What do you want from us? We’re funding drug trials. We’re spending money to make money. Just take the drugs that don’t work, sort of work and cause side effects. No worries. It’s all good. We have drugs for each side effect.

You come across an “analyst note” and “investment thesis” written by a CFA (chartered financial analyst). CFAs are mostly employed by banks, corporations and lucrative pharmacy companies. Not that there’s anything wrong with lucrative. Just wrong that lucrative never leads to a cure.
The CFA talks about a new drug that has “blockbuster potential.” Specifically, in the ‘next big disease market’, as if she’s analyzing a screenplay. You are baffled on every level by this kind of thinking. It’s like listening to politicians who never see a classroom filled with children. They only see “potential voters.” You know the type. 

Is there a better type? Is there a better medicine?

You search for medical cannabis news on autism and epilepsy. It’s been discussed on Dr. Oz, CNN and in bath-tub reading magazines. You discover cannabis comes in many “strains.” Each strain may have a different mechanism of action. Like the difference in action between Morphine and Ritalin. This is kind of serious, you know. You notice some names for various cannabis strains are named after a celebrity. Willie Nelson. Marilyn Monroe. Stevie Wonder. You wonder if this is a joke. It’s not.

You see how desperate other parents have become, for good reason. You see lots of talk about money made in medical cannabis dispensaries. And how many people are paying out of pocket for this hopeful “medicine.” It was their “last hope.” Is it?

You wonder if you should go back to the neurologist and ask for an orphan drug. You never want to be out of options when you have a child with autism and epilepsy who needs help. You’ve already been told “I’m sorry… were out of medication options” by a psychiatrist who read all the failed blockbuster FDA approved drugs for autism and self-injurious behavior.

You certainly don’t want to hear that nonsense from a neurologist. You read about an orphan drug that looks promising. You imagine it may be a blockbuster drug that makes a company a lot of money, but you really don’t care, so long as it helps your child and doesn’t assault their liver and kidneys. 

Updated analysis: A study shows Epidiolex looked at 27 patients at baseline treated for drop aka"atonic" seizures. Epidiolex reduced atonic seizures by 55% after 12 weeks on Epidiolex. And with no clinically astounding changes in hematologic markers or renal function. Indeed, side effects were "moderate and transient." 

Source: (Devinsky et al, Treatment Resistant Epilepsy. American Academy of Neurology, Annual Meeting, April 22, 2015)

Only time will tell. 

If you understand what I'm talking about, you wish time would move as fast as you do when you see your autistic child go into another seizure because every time your child has a seizure time stops. You are activated into emergency mode. Nothing else matters but stopping these seizures. Getting help. Finding cures. You just want this nightmare to end. You want peace. You want prompt medical care. You are tired of waiting. You are tired of the let's wait and see and try another conventional drug or elevate or decrease drug ambiguity. You just want your child to lead a more productive, meaningful life. Surely, this is not too much to ask, right? 

7 comments:

H L Doherty said...

Thank you for your persistent efforts to increase reality based awareness of autism disorders, epilepsy and self injurious behaviors all challenges faced by my soon to be 19 year old son. Harold Doherty, Fredericton, NB, Canada

Willie Ford said...

I have an aunt that died at age 27 of a seizure but it was claimed she did not take her medicine. Her brother has epilepsy with an alert dog.I have neurofibromatosis and have suffered seizure like events due to tumors and low blood sugar. Witnessing a relative or another client at a day program have a seizure is a scary experience for a DD person like me.Try the ketogenic diet or a brain surgerybas and alternative to drugs and their waste of money and profit motive. People with tuberous sclerosis similar to nf work well with epilepsy surgery and ketogenic diets. Make sure the incopotent regional Center and their day program employees know first aid in relation to seizure even unexpected ones in non epileptic clients.

Terrific Tonya Heathco said...

Powerful blog post! National Seizure Disorders Foundation recognizes you as someone needing to be heard. I've recently come across a YouTube video attached to this Blogger account and want to talk to someone about sharing content to increase awareness, eradicate stigma, and set people free.

Contact me,

Tonya Heathco,Founder
National Seizure Disorders Foundation
http://nsdf.us
terrifictonya@nsdf.us

Cynthia Bartlett said...

I also have to thank you. So realistic and raw...that is how the struggle is. Sadly, my son died less than two years ago I believe largely due to side effects of risperdal which is routinely given to our kids under eighteen. I also know what you are saying with regard to medical marijuana however,I do know that I tried it too late with him out of fear. It did completely obliterate the SIB almost immediately. I only wish I had had the courage and direction to have tries it alot sooner than i did...to have given Charlie a far better quality of life than he had.I followed doctors orders until his last month, and out of desperation went out of the box.At least he had peace in those last weeks and no pain from the distonia.

Kim Oakley said...

Cynthia, let me first say I am so sorry about hearing about your autistic son. I can't imagine the pain you feel. Yes, antipsychotics are not the big cure we would all hope for our autistic children, no matter their age. Please don't blame yourself for not trying other things. You were doing the best you could, with the information you were given from professionals. Your son knows you loved him and it's in his precious memory that your pain and loss will bring hope and healing for others like your son. Your courage is not over. Keep advocating. Keep hoping. Keep speaking out. Your son loves you now as he did when he was here. We can't know what happens after this life, but I'm sure he's looking down on you with great admiration and love that will never end. It's mothers like you that keep the light for autism burning....

Rosa said...

Hi Kim, I also have a son with Autism. My son also has Down syndrome. Since my son was diagnosed 4 years ago, I have gotten immersed in studying scientist research, which has brought me to find many lecture in possible underline causes of my son's health challenges related to Autism and Down syndrome. You may look into Mintochondrial dysfunction and Cerebral Folate deficiency. Mainstream medicine won't give you an answer because many doctors are not updated with the latest findings. As Cynthia Barllet commented that her son possible died due to side effects to a medication. "Side effect" is the term mainstream medicine uses to hide underline cause a medical condition, which involves the mitochondria as well as the mast cells. To treat our kids conditions it should be in a cellular level, the issue is find that special doctor with the medical training.

http://www.sciencedaily.com/releases/2010/11/101130161521.htm

http://onlinelibrary.wiley.com/store/10.1111/j.1469-8749.2008.03185.x/asset/j.1469-8749.2008.03185.x.pdf;jsessionid=8B67A69285475289114C748443C0266D.f01t03?v=1&t=i6cwt02j&s=5770730be61db62cc5a03eed84fc65acb9ccc722

Thanks for sharing Jame's story.

Oriel Martins said...

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