Cerebral Palsy, Epilepsy, Health, Our Son, Seizures

Pour My Heart Out

I read a lot of blogs when I can find the time. I try to check in on my favorite folks and their kiddos.  There are a lot of CP moms out there who really pour their hearts out and share everything. I have a friend that told me once I was a private person. I thought this was the funniest thing since I keep an online journal. Doesn’t that mean I share my thoughts for anyone who is interested in reading about them? One would think so. But I censor. It’s horrible to do so as a writer, but I can’t help it because I know a lot of the folks that read my blog. And maybe I don’t want them all to know everything I’m thinking. Or feeling. Or doing.

I wish I could pour my heart out too. I wish I could reach out when I am going through something and just let it all out. It would be healthier for me if I could. Afterall, that’s what I used to do when I kept a paper journal by my bedside. I still have one of those. You know, the journals from decades before the internet posted our thoughts and feelings. But that journal goes untouched for long periods of time. The last paper journal I kept was the one I started when I was pregnant. I used to write in it during my commute to work. Pregnancy stuff. Then when Sebastian was born, I used to write him letters in it while I was in the milk room in NICU, pumping breast milk for him. Then he came home and the next time I wrote in it was on my first outing ever without him, to get my hair cut. Then there is a big gap in time.

Most recently I picked up that journal and wrote a letter to Sebastian on the day he was diagnosed with epilepsy, which was the same day my grandmother was buried. I’ve been quietly processing it all this time. And wanting a second opinion. Just to make sure. To make sure those startle like moments where his arms and legs go out and his eyes go wide and he can’t seem to move until I touch him, to make sure those really are seizures. Those moments he seems stuck and he lets out a frightened cry because he can’t get out of it. Before giving him a medicine that I haven’t even had time to ask other CP moms if their kids have taken it and if so what kind of side effects do they have, I want to know. Are they really seizures? I’m scared. I’m scared to be in Cairo because we have to find a doctor that can monitor him on this medicine to make sure it doesn’t hurt his liver. I’m scared to give him more medicine. Medicine that is so strong you have to gradually increase it and gradually go off it should it upset his stomach too much or have another horrible side effect.  I’m scared the medicine will make it harder for him to develop, that it will slow things down.

When we were in Australia we saw lots of doctors at the Royal Children’s Hospital. That’s what we do. We don’t go on holiday/vacation. We go to see our families and then we play catch up at the doctors and try to fit in all the appointments we should have been doing all year through but haven’t because we live in Cairo. I’m not even going to talk about how that makes me feel.

Sebastian had an EEG to check out the startles he began having April of 2009. I was worried about seizures because he had them for two days after his birth so we knew that it could be a possibility. There was seizure activity on the EEG, but he didn’t have one during that time and the only real way to find out if the startles are seizures is to do an EEG until he has one. I’d like to do that. Just to make sure.

The neurologist diagnosed it as spontaneous focal epilepsy. Which means they are small and there is no damage being done and there is nothing that sets them off. They happen when he is over tired. There is no side effect afterward. He stops when I touch him and recently he’s even stopped on his own. So I’ve got to know for sure, are they seizures? I don’t want them to be.

I want to start HBOT again because when he does that, those startles, those seizures, they don’t happen. So that’s what we are going to do. And I’ll try to start pouring my heart out. A little bit at a time.

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3 thoughts on “Pour My Heart Out”

  1. so glad you arrived home safe. Kara please email me or call me anytime if you ever need to chat 🙂 I hope the episodes can be controlled without meds too. once again so lovely to meet you and your family, Cooper still goes on about how much he loves ALi!!! he tells everyone about his friends from Cairo- it has been the highlight of his holidays 🙂 BRon

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  2. Neena had the exact same thing. We were confused when someone mentioned the possibility that her startle could be a seizure, because they were sometimes provoked and we could always stop them….two things I thought were not indicative of seizures. A 1 hour EEG showed seizure ‘activity’. We started Keppra (a pretty clean drug), but she would still have little jerks occasionally. We went for a 2nd opinion and did a video EEG (48 hour ordeal) and discovered that the movements were not correlated to any brain activity, but coming from her immature nervous system. We are still on Keppra to help ‘settle’ her nervous system, but are relieved to know they are not seizures (her EEG shows irritability on her left side, but that’s it). Hope this helps some.

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