Cyrus is on three anticonvulsants, and he's on the maximum dose for each of them for his weight. Seizures still manage to break through, but the neurologist has always seemed reluctant to add a fourth. Instead, she would talk about substituting one of them. This idea terrifies me because I can tell you what each one of these drugs have done for him!
Sabril (vigabatrin) completely controlled his infantile spasms. And every time we increase it's dose, his seizure frequency almost always cuts in half. This drug has done more than any other in helping Cyrus to maintain even his limited seizure control.
Levitiracetam (Keppra) turned his never ending grand mal (tonic clonic) status seizures into short partial seizures. His first grand mal lasted at least 90 minutes before the ER personnel managed to break it. His second lasted just over 70 minutes. He's never had one nearly that long since we added the keppra. And when he started having multiple seven, eight, ten minute seizures in a week, we simply increased this drug with his growth spurt, and he started having partial seizures instead again.
Onfi (Clobazam) brought back Cyrus's smiles and laughter after four months consecutive months without. It does also seem to control the partial seizures better than anything. If he's having a bad day, we give him this dose just a bit early. But seriously, this stuff brought back his personality - who cares about seizures?!! (I might, but still!)
So the idea of taking any one of these drugs out, to replace it with something else that might work better, but also might do nothing for him - that's simply terrifying!
I thought there was some protocol I didn't know - some reason that we couldn't add a fourth. This confused me because I know of several children with intractable seizures that are on four, and there was even one case of five. So I asked her about it. She almost laughed. She said that there was not a protocol or rule - simply that the longer he took a medicine and the more medicines he took, the higher chance he would develop some significant side effects. We can still add a fourth if he's having bad clusters again (which by the time of the appointment, he wasn't anymore).
In general, the anti seizure meds are all sedatives. So, they may keep him zoned out and calm. But see, seizures do the same thing, except only a million times worse! After a seizure, his eyes are so glazed - you can tell that he's lost. And without any meds he would never stop seizing. I honestly don't know how different he would be if he was without both seizures and without the medicine. That's never been a possibility. So, I've honestly never cared about the sedating side effects. If anything, his meds seem to make him overall more alert if only because his brain works better with less seizures!!
Sabril used to be illegal within the United States, banned by the FDA because it causes peripheral vision blindness in a third of those who take it. Of course a never ending seizure is worse, and so the FDA eventually, changed their minds on this. Every shipment of it we receive comes with giant warning labels that there's no way to predict when peripheral vision blindness will occur. In order for Cyrus to continue taking it, he has to be seen and checked by an ophthalmologist regularly. He said that he always advises patients to be on it for as short a time as possible, but that anyone who is on it generally needs it for issues far more concerning than peripheral vision, so... and then he shrugged.
And I've never really worried about it. As the doctor said, we don't really have a choice so if the cost is his peripheral vision, that is the cost. The alternative is for him to keep seizing until his body can't handle it anymore.
A few months ago Cyrus met with a dental hygienist. She came from a practice that visits his pre-school specifically and they specialize in working with special needs kids who don't cooperate when you tell them to open their mouths. She counted how many teeth he currently had, how many were erupting. Told us that his teeth were very clean and that she wanted us to start using fluoride toothpaste. She also explained to her partner that he was taking one or more medicines that were staining his teeth blue.
I somehow hadn't noticed this, but after it had been mentioned, I could see it. And boy does it bother me! He has two teeth that are for worse than the others and honestly it looks more grey to me than blue. Blue would at least be kind've cool! And that night I noticed the angle I held his head and the angle I inserted the medicine - I could see exactly how those two teeth were more affected. Cyrus even helps. You place the oral syringe at the right corner of his mouth and he opens it immediately. He knows what's coming! And he gets a little bit at a time, about 2 mL - aimed from the right to the inside of his left cheek so that it doesn't spray the back of his throat and send him into a coughing or gagging fit. This also reduces his chance of aspirating the medicine accidentally.
My method doesn't change, but now I see it all the time. And it bothers me. And it bothers me that it bothers me! Like it's such a superficial cosmetic thing. Why is it so easy to shrug off potential peripheral vision blindness and yet obsess over stained teeth?! Am I that shallow?
Maybe. I honestly don't completely discount the possibility.
But maybe it's also because I can actually see it happening.
And there's nothing I can do about it.
General Update:
In other Cyrus teeth adventures, we are working on learning how to chew food in OT. We wrap some food in a bundle of organza (silk based mesh fabric that is apparently safe and non toxic, so can be put in the mouth) and we place it in the side of his mouth - to one side. We're trying to get him to practice chewing on the food, which will release some flavor, but we do not have to worry about him choking on food particles that are too big. We also want to see some lateral tongue movement. Typically right now, Cyrus moves his tongue forward and backwards to move food around in his mouth. We're trying to teach him that there's a whole second axis of motion - side to side! So really, we're teaching him physics!! Haha!
The other amusing anecdote of the week is that this child managed to spit up a bit without my noticing, and then fall asleep right in the mess, and he woke up with it everywhere. I tell you he gives me sleepy smiles, slurs his speech, he's incredibly wobbly, he can't walk, and he's sleeping in his own sick! What am I to conclude other than taking care of babies is a lot like taking care of drunk roommates.... haha!
But he did reach a bit of a milestone a few nights ago! He fell asleep on his own without any addition of melatonin and he slept through the whole night! (Usually, if he falls asleep without the supplement he wakes up at two in the morning wanting to play!) So maybe this suggests we may eventually be able to wean him off of it. Though the next night he was wired and definitely needed the supplement. And I'm not sure if it matters if we can't - he's on such a low dose.
And he's been making this angry face when he's unhappy with me. And I just can't help but laugh. He's just too cute when he's angry. Does that make me a horrible person???
In general, he's doing really well - stained teeth and all! He's getting so big so fast and it's a little crazy to me how much he's starting to look like a child rather than an infant. We hope you and yours are enjoying and appreciating life as well!
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