For almost two years, May’s entire life, she has been afflicted with seizures. These ranged from her first week with seizures so severe her doctors worried she’d stop breathing, to minor seizures that didn’t affect her health, but did disrupt her concentration. At their peak, these kind of seizures occurred several times every 10 minutes. They numbered in their hundreds each day.
To have a small idea of what this was like for May, imagine trying to concentrate on something you found difficult, but could not stop hiccupping: no physical repercussions, but they would destroy your focus. Then, imagine that they never stopped. Sleeping, eating – even the most pleasurable moments disrupted by those annoying hiccups. Hiccups in your brain.
Doctors tried to control the seizures with various medications. One was a controlled substance – like morphine. Actually, come to think of it, one of them was morphine. It’s amazing how traumatic something is at the time – in this case when May was born and she was put on morphine (and two other powerful sedatives) to control her seizures – and I would forget.
In total May tried ten different medications. One tasted bitter, like licking ground up aspirin. Several made her gag. Some were easily pushed out (especially sprinkles). Some melted into a thick paste as soon as they hit her tongue. One did this and turned a bright, turmeric yellow that stained everything. It didn’t taste so hot either.
Pharmaceutical companies make medicines for adults. If they are for kids, they make them sweet (and sticky – watch out). They don’t make them for babies. They don’t consider that babies can’t drink from cups. They don’t think that a seizure medication might be given to a brain-damaged baby that has difficulty swallowing or digesting. They don’t anticipate you delivering the medication through a bottle so that their powder, instead of dissolving completely, might collect like cement at the bottom of the nipple.
Often, we would be using one brand for months and then pick up our new prescription only to find out it was a new brand that May could not tolerate and we’d be completely screwed. Those were moments of real panic for me.
If there is anyone struggling for any reason to give their child a medication, email me. I know ways doctors don’t even know. I’m your pusherman (or mama).
So, on to the good news! May had her first seizure in a week last night! Seven days seizure free. Incredible.
She is only on three medications now: Topiramate, Sodium Valproate and Lamotrogine (the newest one). Seven days is by far the longest she has ever been seizure free. The relief we feel is enormous. Very hard to describe actually. Suffice to say, it is probably the single greatest triumph not accomplished by May herself.
That is fabulous news. Do they expect them to stop altogether or will be tolerated once in a while? I assume last night’s was minor and nothing to indicate they are coming back again. Wow May’s life would be so different and better without them. I hope this really continues in this way forever.
I am so happy for you and for May! I just wrote about Sebastian’s seizures last night and I am going to add a post script of your blog post. You really put things in perspective for me too, Sebastian has seizure cycles where he has nothing for a couple weeks and then he has them daily and several times a day for a couple weeks. I hope that this cocktail of drugs keeps May’s seizures gone for longer and longer periods of time.
That’s really great – fantastic news!
Fantastic news! Hooray for modern medicine – how nice to finally get it “right” for May. Jubilant dancing!!!
Praise the gods of good pharmaceuticals. And may you enjoy the peace of fewer seizures, may you both.
I’m glad to hear May has been doing well! Since I take lamotrigine for something quite different, I’m fascinated to find out that it can be used to such great effect in treating seizures.
What do you use it for? I only know it as a seizure med.
I take it for a mood disorder, and it works really well.
(but does occasionally give me nightmares!)