Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Thursday, November 17, 2011

The "Non-Answer" Answer

I was trying to catch one of Meagan's episodes on camera so I could show it to the Neurologist.  But being that they had just started to increase in frequency, it was hard for me to notice a pattern just yet.  I happened to be sitting with Meagan one evening when she started to have her spasms. Luckily, I had just been taking pictures of the girls, and happened to have my camera next to me.  It has a video feature, so I clicked the record button. 

Meagan pretty much repeated her pattern over the next day.  She was very uncomfortable when they would occur - getting fussy or crying after each episode.  Even if I held her arm or leg, the tension would still continue.  It was enough for me to worry and call the Neuro.  He asked if I had been able to get video, and I said yes.  He said to bring her into the Children's ER so the on call doctor could take a look.

I drove Meagan in to Children's...Brian stayed home to hold down the fort until our sitter could come over to cover bedtime.  We checked in and the on call doctor came in.  He saw the videos and felt that they probably weren't seizures.  Honestly, in my gut, I felt the same way - but - they were something new, they were NOTHING my other kids had ever done, and she is a Hydro baby.  I couldn't just dismiss it as easily.  Apparently, neither could the Neuro because he told the on call doctor he absolutely could not discharge us without being certain.  He told him to go ahead and admit Meagan and hook her up to a 24 hour video monitored EEG.  This way, he could watch her and her brain waves at the same time, and we could put to rest any question of seizure activity.  He also said it would be great for her to have a baseline EEG for any future problems so we had something to compare. 

Meagan got her IV put in (in case it was seizure activity and they had to medicate), and she also had a CT scan to check her shunt function.  This was just in case the shunt was malfunctioning because the doctor said if that was happening, it could be making her really uncomfortable, therefore causing spasms.  Luckily, her shunt and the tubing checked out fine and appeared to be working well.  We then walked to Meagan's room and got settled in.  The nurse said that the EEG tech would be by in the morning to get Meagan hooked up.

Morning came and went, and of course, we were on hospital time.... which meant that there was not even a tech in sight until well after lunchtime.  The tech finally arrived around 2pm to get Meagan set up.  It always amazes me that they know where to put what wire... there are so many and Meagan is so tiny, I personally would be confused.  Once she got all the wires placed, she wrapped Meagan's head in gauze and then taped on a long stocking cap which confined all the wires in one bundle.  The EEG pack was placed in a bag and that way everything was nice and compact so when I had to move her (feedings, diapers changes etc..) it would be fairly easy to do so.

The first night there was pretty much how she'd started to be at home - miserable! She seems to cluster the spasms in the evenings and at night, and so naturally, they wake her up and don't allow her to have a restful sleep, or to fall asleep easily.  Watching what her body did, I don't blame her for being fussy.  I wouldn't be able to sleep either!  Meagan FINALLY passed out around 4:30 in the morning.  Of course I did shortly after - I was absolutely exhausted. 

By 8am, the Neuro had come by to see us.  I honestly was shocked because normally Neuro time seems worse than hospital time... but I was glad to see him that early.  He explained that they probably wanted to keep Meagan another day.  It was both relieving and frustrating all at the same time.  Relieving because obviously they needed more data to make a conclusion - and I'd rather have a definitive answer than an 'inconclusive' result due to lack of data.  But frustrating because this meant a third day in the hospital - another day scrambling around to find sitters for the kids, rides to and from school for the older two, and more stress on Brian being late or leaving early from work. 

The second night we were there was pretty much a repeat of the first.  Her spasms acted up... and she could not sleep well.  Finally around 4am, she passed out again.... and so did I.  Brian stopped by on his way to work that morning.  He hung out for a little bit bent on the hope that the Neuro would once again make an early appearance... but the nurse soon told us that it probably wouldn't be the case.  They had a lot of EEG tape to go through, and at earliest, they would probably be by in the afternoon.  Brian went on to work, and Meagan and I waited.

Finally, well into the afternoon, the Neuro did come by.  He told me, thankfully, there was no seizure activity he could see.  He said there were several abnormalities on her EEG, but, nothing that pointed to seizures.  He said the abnormalities could easily be due to her Hydrocephalus.  He told us if they are still bothering her or interrupting her comfort, to definitely follow up with the Pediatrician and go from there.

Don't get me wrong - I feel extremely lucky that Meagan was not having seizure activity - I am so thankful we avoided that for now.  However, it also leaves me in a very strange place because, once again, we have a "non-answer answer."  Her spasms continue - they are still in her legs and arms and her torso still tenses and bends.  often times her shoulders get involved too.  The only thing I can think of is some sort of disturbance to her nervous system, or possibly muscle spasms because of her Hypertonia. In any case, we are back to square one in some ways - so we see her Pediatrician this week to discuss next steps in helping Meagan. 

I just want to know what's going on with her because I'd like to make her more comfortable and able to have a more restful sleep.  Unfortunately, I don't think this is an answer we are going to get anytime soon because my gut tells me it's going to have to be a 'process of elimination' to get to the bottom of it.  Many people have asked about startle reflex, or just newborn "jerks" being the culprit.  I can definitely say hands down it is neither of these.  My other 4 kids, all very different from one another, did both of these normal 'twitches' with the startle and jerky muscle movements.  But even as different as they all were, NONE of them do what Meagan's been doing.  There has to be something going on with her because they come across totally involuntary.  They always seem to hit her out of nowhere, it always involves the exact same movements in the exact same parts of her body.... and she always is upset after the entire episode.  It's just so repetitive each time... involving the exact same movement pattern right down to what limbs are involved and how she comes out of it.  So we'll see what happens.  I'll start with her Pediatrician and go from there.

I'm very glad we got the EEG done - it was the only way to at least eliminate one of the possible causes ... and being that she's a Neuro patient anyway, it will be good in the future to have this baseline for Meagan.  That way if anything changes, and they need to re-test her for seizures, they will see her old EEG results and have a comparison.

All hooked up and ready for her EEG

Another Hydro mom, Amy (Claire's mom) came by to see us and was sweet enough to bring Meagan this nature sounds lamb.

Getting a Daddy snuggle when he stopped by on his way to work

Squiggly lines. I have NO clue how they read this stuff..but here are 4 shots from different time periods of Meagan's EEG.

A VERY tired baby. Muscles that don't cooperate make her exhausted!

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