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 OUTOF 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.