January 25, 2011

That's enough thank you very much.

I looked down at my feet and saw that I hadn't had time to tie my shoelaces. I was groggy, although the word 'delirious' seems to me to be a better fit. When you are woken from a deep sleep and called into action.

And it's not that she doesn't know what to do, Segev's mother. I'm sure that if you were to quiz her, given enough advance notice so she could prepare, and given enough time to answer, she knows what to do.
But at that moment, Segev having a third episode in two hours of simply and quietly ceasing to breath, all blue and 'ragdoll', there is no time for prep, only for action. By the time I arrived though the nature of the seizure had (thankfully) changed into a cluster fuck of myotonic oblivion, one seizure becoming the next with no respite. My daughter was operating the suction.

In North America you call it diastat, rectal valium.  I barked orders for  Segev's mother to get it but she couldn't find it at first; once again that strange phenomena occurred where, in her house, Segev's things are always located in some magical hiding place.

Running is a good thing in situations like that. Some people are not built for emergency situations. Let's leave it at that.

Segev required monitoring and oxygen and I stayed on to make certain the bizarre and life threatening central apnea seizures did not return. I can recall one other episode in the last year that was similar, but still different enough that there probably is no connection.
There is a connection to strange facial twitching that Segev has started to exhibit. He also gets yawning spasms, just like my mother, due to damage to the nervous system. The last time he had central apnea was in 2006.

Yes I'm worried, but probably should not be. The new 'What will be will be'? I can't do anything about it. Didn't I just say I can't do anything about it? I mean, in the previous post? I have to learn to keep my mouth shut, or to stop being superstitious.

Tomorrow morning I will pick him up, all being well.  Time for sleep now, if I will be able to get to sleep, worrying if I will get another call.

*second call at 02.00

I'm thankful the valium is still a workable option. I've been there many times that I had to resort to midazolam, the problem there being that, as it is meant to be used as injection, the viscous drops are poorly absorbed through the nasal arterioles. There is no proper midazolam spray available here. Wracking my brain to think of hospital options-nearly makes me nauseous every time I think of the 'wars' convincing physicians from previous visits to even do an eeg or call in a neuro consult. They've never even heard of Ohtahara.

** Third call 04.30

 *** Fourth call 08.00. There till nine thirty and then home to shower and prepare to take him to hospital. After enough sedation to bring down a male African elephant he is still having major seizing activity, though with longer intervals. Is this good or is this a sign he is entering silent status epilepticus? Pulse is good, oxygen (with supplementation) is high, blood sugar is good (low would be a bad sign). 

At 10.00 I'm back ready to call an ambulance; his mother tells me he hasn't had another seizure since the last double dose of midazolam and diazepam. I sit and watch him for another 15 minutes and see mild seizure activity, but not the same one's as before. I pick him up and he reacts with a pattern of movement, weakly, but that he does when bothering him in his sleep. This is a good sign. If he were simply unconscious he would not have that reaction.

He is with me and I am watching him like a hawk watches its prey. He is jumping strangely in his sleep, shocks of movement like a regular person might but more volatile, repeating itself, sometimes accompanied by a groan of sorts. 
Keeping watch. 


  1. Rest well, my friend!!All I can offer is to share with you some of my "oral" valium. My thoughts are with you.

  2. The night is shot Phil, but I appreciate it. The main thing is of course knowing which way it's going to go; being on edge from uncertainty is stressful.

  3. How is he now? How are YOU? All I can offer you are my thoughts and prayers. Which is not much really. I hope Sergev is doing better and you can get some rest.

  4. We're a poor substitute, no, for real company and bodies to help? Sigh.

    I send my continued constant prayers and thoughts.

  5. Sending Segev (((((White Healing Light)))))♥♥♥