Friday, June 19, 2009

Back into the swing of things

Last night was a fairly good night for sleep. I don't think I mentioned it, but we did discuss Reagan's sleep (or lack thereof) with Dr. Chugani during our visit. He suggested trying the high 6mg dose of melatonin. He said that sleep issues are very common in kids with infantile spasms because they are unable to get into a regular sleep pattern (makes sense if they are having episodes of hypsarrhythmia at night like Reagan). He said that if the melatonin doesn't work then we may want to try clonidine at night (something our local neurologist already mentioned). So we'll see. We hate adding anything else to Reagan's already full medication schedule, but if it will help her sleep, it would be beneficial to us all. Today we slowly got back into the swing of things. Reagan only had one therapy, feeding therapy, and she was very cooperative allowing her therapist to do all sorts of stretches without so much as a peep. She also ate a little applesauce and took a few pretty good bites. It's all a matter of timing with her. You have to be patient but if you get it in there at just the right time, she'll take it off the spoon and swallow it down no problem. Seizures have been a little rough today. I'm ready to try something new. I'm a little unsure of the effectiveness of the Keppra. Initially we thought we were seeing improvement because although she was having more "twitches", she was having less of the typical spasms. Now that we know the twitches are seizures too, I'm not sure how much the Keppra is helping, if at all. I spoke with the Canadian pharmacy today and they shipped our order of Clobazam. It will probably take a week or so to get it, but we can start it as soon as it gets here. As far as Canadian drugs go, it's relatively affordable (especially when compared to Vigabatrin) which is good since insurance doesn't cover it. Reagan had a scary episode tonight and I'm still not sure whether it was seizure related or just a long breath holding episode. Mike was holding her while I took a shower and when I got out I could hear her crying and then nothing. All of a sudden I heard him yelling her name over and over again, I ran into the room and there she was stiff as a board, totally purple and not breathing. Finally she came out of it, but I could tell Mike was visibly shaken. It's scary. We have no idea what brought it on. Maybe tummy pains? Maybe a seizure? Who knows. This girl, always keeping us on our toes. Hopefully we won't see another one of those for a while. Here's to an uneventful weekend at home.


Heather said...

Hate to hear about those episodes.Absolutely hate it.I do hope this weekend is uneventful and that you all can catch up on much needed rest.Love to you all.

Holly said...

Glad you are home.

Caleigh had an apnea episode like that and Eric had to do CPR to get her breathing again. We ended up in the PICU and found out that she was having complex partial seizures. This was March of last year. Scariest experience of our life!

Caleigh was also on clonidine, but for high blood pressure. It lowers the BP. Our kidney doc told us that it only lasts about 4 hours with each dose so you might ask about that and watch her BP too. I will say that as soon as it 'hit' her system she was out. Out Out Out, it was crazy. So maybe you will have luck with it.

Here's to a quiet and calm weekend.

Dawson said...

That sounds so scary!! I cant imagine what that was like and pray that you never see one of those again. Glad you guys are getting settled back in and we too hope you have a VERY uneventful weekend.

blogzilly said...

That's super scary. Is that totally new? Never seen that before? Very strange. I understand that some major stiffening occurs just prior to a tonic-clonic seizure, but she did not have one of those correct?

Karen Owens said...

Oh mIss Reagan -- keeping everyone on their toes! Hoping "home" brings you some rest.

Much love from PA.