Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Friday, January 6, 2012

Avoided a New Storm

The Neurologist finally came in to talk to us today.  Her EEG showed no Hypsarrithmia (the brain wave pattern consistent with Infantile Spasms).  This is great news!  Her other seizures are acting up, though, as they had been at home.  So we talked about upping her current med, again... or switching to new one.  She currently takes Phenobarbitol -- and although it helped reduce her seizures, I haven't been impressed with its efficiency. And it makes her tired... so upping the medication even more will not make me comfortable.  The Neuro mentioned another medicine called Keppra - we have heard lots of good things about this drug from other families (who had also tried the Phenobarb first).  Many of them have seen good results, without the fatigue - so we are hoping that we have the same luck.  Before we leave, they will start to wean the Phenobarb, and build up the Keppra.. and hopefully it will keep her seizures at bay a lot better.

The doctor was able to see her videos of her spasms -- He said even though there was no EEG pattern consistent with IS, to keep an eye on the spasms since they do look so similar. He said if we don't see those go away with the Keppra once she's on a good regimen, we may have to come back for another 24 hour EEG.  Sometimes, he said, spasms can occur before they are able to get a Hypsarrithmia pattern in the brain waves.. so it's just something we have to watch. If any of that changes, he said they will be sure to jump right on it and treat accordingly.

This is only a small sample (3 or 4) but this is what Meagan's spasms were looking like.  She would go for 2 minutes sometimes!  These start around 45 seconds.  Three bigger ones follow right around the 55 second to 1:14 mark.  She was actually in the middle of one of her normal seizures she's been having - which is quite obvious.

Although I hate seeing Meagan uncomfortable from her seizures acting up, I am VERY thankful we have no Infantile Spasms at this point! That is a great thing and one less worry.  I will continue to log her spasms, and hopefully we see them get fewer and further between as we start Meagan on this new med.

We are still at Children's for another night.  Since Meagan's seizures are acting up, they want to go ahead and get an MRI done in the morning.  The Neuro said when there is a change in seizure activity, there is always a need for a brain scan to double check if there are any changes in brain construction as well.  I'm actually quite excited to see Meagan's MRI scan tomorrow ... the last MRI I saw of her brain was when it was ENTIRELY filled with fluid.  So I am hopeful I see some lovely brain tissue in there growing out!  After her MRI results are read tomorrow, and the Neuro talks with us again, we should be able to finally go home by tomorrow afternoon or evening.  We will continue changing her seizure meds on an outpatient basis and they will just monitor her seizure activity closely to make sure it is working.

  It's ironic that today is the Epiphany - the Feast of the 3 Kings.  They came to give gifts to the Christ child - and yet I feel today Christ has given us a gift with Meagan's EEG being negative for Infantile Spasms.  We have avoided a new storm for now. Thank you, Lord, for such a generous gift on this day, the final day of our joyous Christmas season! Happy Epiphany to all!

Thank goodness Daddy brought her bouncy seat  - it's the only place she will sleep besides on me! Hoping for more sleep tonight!

As another Hydro mom said - the tests stink...but why are our kids so darn cute in their head wraps?

EEG glue hair

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