Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Friday, November 11, 2011

Gut feeling ... or over worrying?

 Meagan has always had strange tremors or spasms since she's been born.  Matter of fact, I even asked that she go ahead and be hooked up to an EEG while she was laying in the NICU.... but I was told by the nurses and the Neuro at the time that there was so much going on with Meagan's head, it was probably just her body working itself out. I was 'ok' with that explanation because the spasms really were few and far between so I started to second guess myself and agreed to not do an EEG.

So here I am, 7 weeks later, and wishing I had put a little more pressure on the doctors to go ahead and do an EEG.  Meagan's spasms that used to be few and far between, or at least, unnoticable to me for the most part have grown into daily events.  They normally happen several times a day - typically after she's awakened or eaten.. but not always.  Sometimes they are just at random times. 

They always start in the same way -- Meagan either looks up or her eyes get really big like she's scared.... her legs tense and either bend at her waist, or tense straight out.  Then what happens is she has a severe spasm where her arms go outward, her legs bend up towards her waist as her body tries to bend in half.  Sometimes her head turns to the side.  She has several of these in a row normally.. anywhere from continuously to a few minutes apart.  Sometimes she's quiet in between, and sometimes her arms/hands seem to have tremors in between.  And they always end the same way... she is upset/crying and fussy.. and  she passes out asleep.  I don't blame her. If my body did that, I'd want to pass out asleep too.

I kept going back and forth over the last week whether to really worry about them or not -- was she really having spasms or jerks due to Neurological reasons? Or was I "imagining" it.. as everything with her sparks worry for me.  I finally talked to a few other families - and with that and my gut feeling I decided to go ahead and call the Neuro to schedule an EEG.  I figured, if they are Neuro-related, I can find out, and get her on meds.  If they aren't, then I will know to pursue the muscle-related route with her Pediatrician, and perhaps we can figure out something that will help her be more comfortable when she is having an episode.  These clusters, whether Neuro or muscular related, are most of the reason she doesn't get much restful sleep.  She will have these episodes often enough that she doesn't sleep well - which means Mama doens't sleep well. If she just woke up to eat and went back to sleep, it would be ok. But I hate that she seems uncomfortable and even scared during them... so I had to pursue it and have it looked at.

I saw the Neuro on Tuesday.  He agreed that it didn't sound "normal" and was worth checking out.  However, they didn't have an EEG opening they could squeeze us in to after all.  They were able to fit us on the following Friday, so we took it. 

Friday came fairly quickly  -- we went in for her EEG.  I tried to press the Tech for at least a little information but she said she couldn't tell us anything.  She said the doctor would call us in 5-7 business days. Being that it was a Friday, I'm not holding my breath for any answers before even next weekend.

All in all, I'm feeling "ok" about it all.  I really feel deep down that it's nothing - that what she's doing is not seizure related.  But I needed to get it checked out to have peace of mind.  Seems I'll just have to wait 5-7 days for that. Sigh.

All hooked up and ready to go


  1. I had one seizure (GrandMal) when I was 9. It was terrifying for me and my parents. I can understand your concern - and from your description, I feel it could be seizures. :(
    I baby-sat for twin boys with CP that also suffered from frequent seizures. They would tense up, sometimes drool, and their eyes would widen (looking scared) then they would sleep.
    Hugs for you, momma. And dear sweet Meagan. Prayers! St. Gianna, pray for Meagan!

  2. Thinking of you. I lurked on FF and have been following ever since. I have a daughter with a severe brain injury, and although it's not hydro, we certainly have some things in common. Anyway, what you're describing sounds like infantile spasms (try not to google it, but it's a type of seizure). My daughter had them too. I really, really hope this is not the case, because they can be hard to treat. However, we do have ours under control and I have a lot of friends who have also dealt with this too. Please, reach out to me, I will help in any way possible. Seizures are just the worst. I hate them. I hope the next few days goes well. Btw, Meagan is just the cutest thing ever, and your whole family is gorgeous. Plus, I'm thrilled you got to do the Duke thing - I'm optimistic for this!

  3. I was thinking the same as Jenny (also an FF lurker with a child born with a brain injury) about the Infantile Spasms. Unfortunately I have heard of a lot of people having numerous EEGs and them not showing the typical pattern for several months (consequently delaying treatment) So if Meagan's spasms do not improve, even though you got the all clear from the EEG, press for another one until you can get a real answer. Infantile Spasms are something best treated sooner than later. I really hope it is not IS though. You are doing a great job with Meagan and I love your outlook that you have to celebrate everything she can do, and not get too caught up on the things she can't. It is so hard Mama, but hang in there!