Dylan appears to be having Infantile Spasms again.
Wednesday night I noticed Dylan was acting very odd as I was feeding her and getting her ready for bed. So odd I was worried, really worried. I picked her up and she was hanging on me, holding on so tight. Then she fell asleep, right in my arms. She NEVER falls asleep in my arms, ever. I hesitated to admit, but thought she might be having spasms again... I mentioned it to Matthew who said that it was probably not them (denial?), and also that he wasn't sure if he could do another round of seizures (sadness...), and tried to reassure me and tell me not to be concerned.
Thursday morning as I was dropping her off at school, there they were... again. She was having them. Faint, like when they 'burned out', but they were definitely there. My heart sunk. Here we go again. We always knew they could come back, or turn into different kinds of seizures, but one can hope. I was broken. It takes quite a bit to break me, but I was most definitely broken.
I called Paula as soon as I got home. She's wonderful, of course, and she told me to come to Spina Bifida Clinic the next day (Friday) to see Dr. Neuro and to schedule an EEG as soon as possible, hopefully before clinic. When I called for the EEG they only had afternoon appointments but upon checking with Paula that was okay, we would just see the Neuro first and then do the EEG.
I was honestly a mess - I put foundation make-up on for probably the first time since my wedding (I kid! Kinda...), that stuff actually works quite well. I put on a happy face and ran in to Dylan's school to teach Ms. Shelly how to feed Dylan. I also talked to the Manager at the school about the kids and the bus... more on that later. I didn't want to talk to anyone about it, no one... I had to come to grips with it myself before I did anything like that! So I told Matthew, but that was it. He was fine - that's the good thing about us, we never "break" at the same time, so we balance out well when the other one needs, more than anything else, someone to be strong.
For the EEG we were instructed to keep Dylan up 2 hours later than usual and wake her 2hours earlier. Pretty hard with that little gal since her sleep schedule is absolutely insane. We never know what times she's going to sleep but her dad kept her up until 2 (with one teeny nap at about midnight when he wasn't looking) and I got up with her at 7. On the way to drop the boys off at Ami's I had to do a mad dash to the back seat when we saw her closing her eyes. Which she thought was pretty funny actually. I was tickling her hips and she was smiling with her eyes closed.
Dr. Neuro talked to us about the spasms. Normal IS shows up around 6 months, not 2 years... and rarely have they seen them come back after three! (Rarely, not never...) But he did say that we keep in mind that her nervous system is at about 9 months and that probably plays a factor in it. We talked about medication, we talked about the plan, we talked about everything. Will they get worse? Maybe...
The first EEG she had when they started in July 09 was somewhat inconclusive. She maybe had hypsarrythmia (the cause of IS), she maybe didn't... it wasn't normal, but was it IS? The steroid medicine only works on IS and a couple other types of Epilepsy, so if it wasn't, and we started the aggressive steroid treatment we might be barking up the wrong tree. The EEG she had mid-treatment showed more hypsarrhythmia and made them more confident of the decision they had made to start ACTH. The ACTH worked, the seizures stopped, that time... and usually if the IS was to start again, it would have started before a year down the line, but we are all about keeping people on their toes around here aren't we?
If this EEG comes back inconclusive we make another educated guess. We might wait and watch, we might be aggressive. It's not going to be fun though... ACTH times weren't good times here. While Dylan (thankfully) wasn't affected like some other kids with the bloating, high blood pressure and lack of sleep she was just generally miserable and inconsolable the entire time. She was a whole new kid when she was weaned off it. One of my good friends who's amazing little person had IS actually has some ACTH on hand if we need to get the ball rolling before insurance agrees (the cost is another factor, as each vile of the medicine costs upwards of $30k).
Dr. Neuro asked about her milestones, we she going backwards? Part of the reason IS is such a scary type of seizure is that the seizures are damaging to the brain and the children can regress... rapidly. Often before you can get in to see the doctor and start treatment. Imagine having a little Ian - starting to walk - and then a week later having that child be a 2 month old again. Dylan didn't seem to regress last time, making it an atypical type of IS, and we are crossing our fingers for this time but it's only been a few days.
The EEG went quite well actually. She was so AMAZING while they put the 28 little electrodes in her hair, roughing her up, pulling her hair and sticking cold globs of glue on her. I was holding her head and she barely even complained. Just the holding would normally tick her off and combined with the annoying things and the lack of sleep? Yea... she's pretty incredible. Then came the turban, a wrapping around her chin and under neck to keep everything in place.
Her dad curled up on the bed with her, they turned the heat down to probably 75 degrees (it was at 80!) and turned the lights off. We were hoping for sleep. The most common times for seizures are in the first and last 15-20 minutes of sleeping so the goal would be for the appointment to be kept in this type of sleep.
I think daddy passed out first but Dylan followed shortly after. Success!
I have never seen a normal EEG, but hypsarrytimia basically means that the parts of the brain (represented on the screen by lines) don't work together, they kind of do their own thing. This was happening... but what do I know? She also had a few "XL Abnormal Spikes" which a quick Internet search can tell you show up in abnormal EEGs, but they can also show up in normal ones and the Epileptologist looks at the surrounding factors, what else is going on at the time, are they in clusters etc. I guess some things I do have to leave up to the doctors right?
They woke her with a strobe light, she kept trying to cover her eyes, so cute. Then, it was over. They rapidly (and quite rudely I might add) pulled off the electrodes, wiped her head down a little and sent us on our way.
Paula told me she would keep checking for the results and she would call if they came in that afternoon but to not expect anything until Monday.
In the mean time, she's had more. And Matthew even saw them last night proving a) I am not crazy (though I wish I was) and b) that she was really having them. And I should add a c to it) proving these two things to Matthew (equally as important!). They are heart breaking even though they are small at this point. She just looks at you very accusatory, like you did something to her. "Did you do that? I didn't do that? What WAS that?" over and over... I imagine like a really bad (and possibly painful?) case of the hiccups! Cognitively I guess it's a good sign that she's noticing them this time though right? Last time she just went on with her business... (Looking for a silver lining here people.)
I know that we were lucky to have a full year without seizures. The truth is that IS is so had to control that some people are never able to stop them. Then, once they do stop, whether by aggressive seizure medication, the child growing out of them, or even a hemispherectomy, over 50% develop other types of seizures. We would be in severe denial if we thought that she wouldn't be affected by seizures again given her cute little abnormal brain.
And - At some point I expect the doctor to turn to me and tell me that seizures are something that we will have to deal with. A ton of Dylan's HPE friends have seizures all the time (some, like little Eva, nearly constantly). But again... one can hope right?
Dylie's Uncle Michael was one of the naughty few who tried to talk to me about it KNOWING I didn't want to talk. (Though I should add, HE didn't want to talk either...) He was stunned with the bad news, but thought it amazing that we could be so blessed to have something in our lives that we care so much about that something like this can cripple us, bring us right to our knees. Break us. We are pretty lucky to love this little girl that much.
So, in hindsight? Cathing is a piece of cake, let's not go from bad to worse mkay?
I forgot my camera - So the only ones I have of her with the good camera are ones taken when she woke from her beauty sleep late in the evening. These from my cel phone will have to do!
Someone was losing this battle... and it wasn't Dylan.
She fell asleep while we were eating and there wasn't anything Matthew could do about it. She was out about ten minutes before we were able to successfully wake her again
Asleep in the night vision camera - It was pitch black, but this is what I saw on the screen.
For those fortunate to have never seen an EEG up close and personal, this is what it looks like.
And this is a pretty girls cute face during one round of the strobe light.
Rudely yanking off the electrodes (The girls in the past have been much nicer!)
Still resting eyes...
Finally awake,
But still very tired!
Oh there we go!!
She became very smiley after that! Back to Dylie!
It takes some good solid effort to get the glue out of her hair. She slept from 3 to about 9 with Nick Nolte hair.
And it just had to be documented but we cleaned it up right after the pictures! I promise!
