Friday, June 13, 2008

Return of the breath holding

Last night wasn't exactly the restful night we were hoping for and today has been a strange day. Reagan woke up this morning having SO many seizures. It was just one bad one after another after another. She was handling it like a trouper but it was causing me much distress. My stomach was in knots and I had a few mini meltdowns during this time. Then finally I caved and gave her a clonazepam...she hasn't had one in days and we're never really sure what if any effect they have in helping her seizures but at this point anything was worth a shot. Then shortly afterwards the seizures tapered off and went away (was it the clonazepam or had they just run their course...I don't know). She got a little fussy as she got tired (she was up from 4:45am-6:30am & then 7:30am-10:45am) and the crying sent her into one of the dreaded breath holding spells. I forgot to mention, she did one of these yesterday while we were at the doctors office as well. It had been weeks since she had one and I thought we were rid of them. Guess not. Anyway, the breath holding really did her in and she took a nice long nap from ~10:45am- 1:20pm this afternoon. Then I finally saw her beginning to squirm, so I went over and tried to encourage her to wake up (because she was already VERY late for her next feeding) but she just started crying. So I picked her up and she proceeded to go right back into another breath holding spell, until she pretty much passed out. So here I was holding her, completely limp but she needed to drink her bottle. So I encouraged her to drink it in her sleep, it was a struggle but she eventually finished it and then I put her back in her swing to sleep some more. Of course it never occurred to me that I should sleep while she was sleeping, which would have been the smart thing to do. I always think I'll just do a few more things THEN I'll try to lay down and get some rest. But she can sense it and never fail the second I lay down, she's up! She finally decided to wake up around 3 and she was in a great mood but about 10min after waking the seizures started back up again. She was just having non stop seizures...she even had 2 of the short (~10-15 sec) tonic seizures. I was a nervous wreck and at 4 I finally decided to put in a call to the epilepsy clinic (even though I knew the nurse practitioner was out and I would probably have to talk to our old neurologist). As luck would have it, the nurse practitioner called me back (they obviously don't have a problem calling her at home...good to know) and she basically said that we need to try to tough it out and to use the clonazepam as often as needed (every 8hrs). She said that it could be the teething, Reagan could be coming down with something, or she could just be adjusting to the new ratio...but in order for us to really know if there's any chance of it working we have to give it a little longer. OK, but please God give this baby some relief from these seizures soon!!!! To top it all off, her top teeth have broken through and she's been a quite irritable tonight. No not tonight...we need some rest!!!!


Sophie's Story by Elaine said...

I hate the guessing...not knowing if it was the clonazepam or what. I hate always guessing why she has more seizures one day versus the other. Especially with the diet. That had me running in circles everyday...recording every bit of food she ate and wondering why one day was better or worse than the other. It has been over 2 years since Sophie had her first seizure and now I stopped guessing. I take the good days when I get them and try to stay strong during the bad days. I pray that Reagan has more good days than bad and that she gets out of this bad spell quickly. I know how hard it must be on you as her mother to watch her go through this.

By the way, Sophie is currently on Clobazam (Dr. Chugani was the one who suggested it) and it helped control her seizures a bit. Clobazam is much like Clonazepam but I think it might have a higher success rate...not sure though.


Marc said...

I'm so sorry to hear all of you are having such a rough time. Hopefully the teething will subside and everyone can get some rest.

I know I have probably mentioned it before, but if you have a box fan, white noise machine, or tune in a radio with static to try to generate some background noise to help Reagan sleep. It has always helped Mira decompress and sleep solid for extended periods.

What type(s) or seizures is she having? Are they all tonic-clonics or myoclonics/jerks/spasms?

I hope and pray that you can all get some relief soon.

Heather said...

I wish I had the words to help you. I wish I had been here today when you called. I wish something would start giving Reagan some relief. Wishing and praying, it seems to be all I can do for these kids sometimes. Thank you so much for your comment, especially today when you had such a difficult day yourself. I'll be thinking and praying for you all, as usual. Keep the faith Tera, I know you will.

Dawson said...

prayers are with you today. Hope that today will be a much better day for you guys