Friday, September 25, 2009

Infantile Spasms


Characteristic EEG of a child with infantile spasms

I've gone back and forth about posting this today and that's because I want to do the public service, but I have to admit that dredging up infantile spasms awareness gives me a lot of emotional distress. Sophie was diagnosed with this rare form of epilepsy when she was three months old after previously normal development. While we have never found out the reason for the seizures, we suspected that the initial vaccinations given to Sophie approximately ten days before we noticed the spasms were, at the very least, a catalyst for what followed. You know the rest of the story, but if you don't, suffice it to say that Sophie is now fourteen years old and still seizes daily despite eighteen drugs, two rounds of the ketogenic diet, countless dietary changes, Chinese medicine, osteopathy, homeopathy and even some voodoo shit thrown in (laying on of hands, prayer circles, Reiki,  Jewish Orthodox holy men, water from Lourdes, faith healers, Benny Hinn!!!). She is a beautiful young lady, non-verbal, with eyes that speak of a bottomless intelligence despite its apparent inaccessibility.

The first drug that Sophie was put on is called ACTH, and it's administered by intra-muscular injection. By the parents. That means us. We injected the gel into our little baby's leg twice a day in a macabre ritual filled with the most desperate hope. In some cases, it can stop infantile spasms cold, but that wasn't our story. ACTH is a steroid and given in high doses can cause a lot of problems. Sophie had those problems -- her face and body broke out in a gruesome thrush infection, she screamed and cried for literally 23 out of 24 hours a day and her seizures kept coming. Halfway through the course of the drug, the company RAN OUT OF SUPPLY (I kid you not) so we had to wean her by using Prednisone. Then she developed a rare side effect of the wean called pseudo-tumor cerebri. I won't go into details but she had to have FIVE lumbar punctures to ease the swelling. She was five months old by then. And it was only the beginning.

Anyway, I was told by this blogger that Infantile Spasms Awareness Week is October 11th through the 17th. What I learned is that the big pharmaceutical company that manufactures ACTH is one of the sponsors, and that, frankly, makes me sick. I know that ACTH has helped many children combat infantile spasms, but it hasn't helped many more. In addition, the drug appears to have been jacked up in price by what seems to be thousands of dollars. Holy shit, is what I've been thinking as I scroll through Marissa's father's blog and the blogs of others that he connects to. I am many years down the road from infantile spasms as Sophie's seizures have evolved into new and different variations of that original disorder.  But, from what I can tell, treatment for this devastating disorder is very much the same as it was fifteen years ago when Sophie had it, with the possible exception of one or two drugs that have only recently been approved for use in children with infantile spasms (and were available through Canada and England back in the day).

Though not surprised, that makes me extremely sad and frustrated. And also explains why I'm sort of a raving lunatic when it comes to Big Pharm and the current way children with hard-to-control epilepsy are treated.

And like I said earlier, I'm in no emotional state to go down that path. At least not today.

Suffice it to say that Infantile Spasms Awareness Week is October 11th-17th. And this is a type epilepsy so brutal and awful that it would serve the whole world to know more about it. Especially pediatricians who don't know it well enough to diagnose it in its early stages. Especially for non-profit foundations who have the money and wherewithal to fund research projects that might advance the treatment of it. Especially the public who are as yet ignorant and unaware of how many people are affected by epilepsy in general and how many children have these difficult-to-treat seizure disorders, seizure disorders like Sophie's that have the potential to ruin lives or at least cause enough extreme havoc that one (who me?) is forever treading water, trying to keep one's head up and breathing.

That's my Friday rant. Go read the blog I told you about. Here's the link, again.

And give me a wide berth about Big Pharm and Big Insurance. Don't get me started.

13 comments:

  1. Hi!

    I'm brand new to your blog and just wanted to say hi and thank you for this post. One of the characteristics of my baby's syndrome is epilepsy, and I'm fearfully awaiting the onset of the seizures. It helps to hear from parents who have been down that road.

    After 14 years of seizures, you must be painfully exhausted. It sucks and I'm sorry for your struggles. But your blog is great and it's helpful for people like me who are new to this not-so-volunteer journey.

    Wishing all the best to you.
    Erika

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  2. I really commend you for posting about this. My son was on ACTH when he was a baby too. It was hell. I felt like a monster giving him those shots, even though it was what was perscribed. A nightmare. These are the kinds of things only another parent can understand who has been there. Thank-you so much. Maybe I can go back to those memories and know I wasn't alone. At the time I didn't know anyone going through the same thing. Blessings on you and your beautiful girl.

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  3. I am brand-new to your site as of this morning. The timing is ironic, as we have shared your nightmarish journey with infantile spasms, and I am just now on my feet well enough now to begin my formal crusade against them. Four years ago these God-forsaken seizures stole our firstborn infant son away from us before our very eyes, while we fought with everything we had against them. ACTH, the "gold standard" (HA!) was hell on earth, and he failed it anyway. We are thankful that a cocktail of vigabatrin (an excellent drug for IS which was just FDA-approved, Hallelujah) plus several other AEDs PLUS the ketogenic diet finally worked to make our boy seizure-free about eighteen months ago. But the complete devastation of his little mind and body had already run its course. It even stole away his ability to smile for over a year. Our biggest miracle has been the return of those smiles and some laughs, slowly over time, once we got him seizure-free. Nonetheless, our beautiful boy (who also has Down syndrome) is profoundly disabled, both intellectually and physically. Our sadness as his parents is as strong as ever; it just has gone largely underground now. In many ways, our son died in his first year of life, but his body continues on and we have no closure as people normally do with a physical death.

    I am just about to start my own blog on this very topic. Our mutual friend "Single Dad" kindly set me up at www.killinfantilespasms.com. Just give me a few days and there should be some actual content!

    We have a lot in common. I would very much like to talk with you more about your experiences, both online and off.

    Thanks for posting.

    For now, I am,
    KILLinfantilespasms

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  4. The possible connection with vaccines is alarming - and real.
    Our chiropractor has warned us against the h1n1 vaccine because of a rare but very real neurological side effect that changed the lives and possibly even killed many people in the first swine flu "outbreak" in the late 70's.
    Hindsight is 20/20 and it really sucks - esp when govt and big pharm prefers blindness

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  5. It is a pretty sick joke, the ACTH connection.

    Thanks for stopping by, too. I appreciate it.

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  6. Any time you are ready to go out into the streets against the pharmaceutical greedy, irresponsible and I don't hesitate calling them murderous bastards all you have to do is call me. My reason to despise them the way I do? I used to work at the then Columbia-Presbyterian Medical Center at the Pediatric Seizure Clinic in the late 60s.

    Enough said.

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  7. keep treading...you're awesome

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  8. Elizabeth - I don't even remember how I came across your blog, but I've been reading it ever day for some time now. You have such a beautiful way of writing, and your posts always touch my heart (and sometimes my funny bone). Thanks for that.

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  9. Our dear local coffee importers/roasters have a son who has infantile spasms. I had never heard of them until he was born. I'm so thankful that you - and they (http://owenkeithmarshall.blogspot.com) - have blogs so you can write, share your experiences and give/receive support. Knowing that you're not alone can be a powerful comfort. You're not alone!

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  10. Elizabeth, you may feel as if you are ranting (and you certainly deserve to rant) but this post is very informative. You are an invaluable resource to parents of other special needs kids and an advocate for change and truth and beauty and good--which is good for all of us.

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  11. Hi elizabeth! thanks for stopping by connor's blog! I look forward to checking yours out more. Your daughter is just a beautiful young woman. I would love to chat sometime about our similar journey that we are on & see if there is any advice that you would like to share. I haven't met anybody w/ a teen that had IS so I guess i'm kind of curious to "pick your brain"??? I guess right now I'm just kind of curious about how she is doing now developmentally & how her seizures are...what have the IS turned into? Sounds like our stories are fairly similar. My e-mail is mmcguirern@yahoo.com Thanks Monica

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  12. i am in the same boat as you my son is 16 months old and he is still taking different medications. i will tell you more if you can contact me. i would like to speak to you about more since your daughter is 24 now. i would like to learn more.

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