Good News

We have been to Chapel Hill and had a 36 hour Video EEG and now we are back home again.  Her EEG did NOT show Infantile Spasms.  When she has an EEG, there is a little button we push every time we think we see a seizure.  She had several of the episodes that are of concern to us and hit the button every time.  As it turns out those movements didn’t even register on the EEG.  Nothing, not a blip, not a spike, not a change and definitely not hyppsarrythmia (the brain wave pattern that is the signature of Infantile Spasms).  I can’t tell you how surprised and how so very relieved we are to know she isn’t having infantile spasms.  

We arrived in Chapel Hill last Wednesday evening around 8:45pm and we were admitted pretty quickly.  By midnight, she was hooked up to the EEG and she didn’t like it!!!  She handled it admirably after everything was actually in place and she was hooked up, but she let it be known that EEG’s are not her cup of tea!  It was nice to see familiar faces and meet some new ones this time around.  I must say, Peyton always receives the best care at Chapel Hill.  They know lots about the keto diet so it’s always seamless with her meds and her food.  We are so grateful for the team that cares for her.

Her EEG actually looked a lot better than the last time she had one which was in March of last year.  Her seizures have always originated in different areas of the brain, left side, right side, upside, downside!  This time, her seizures all focalized in the rear left area of her brain.  We don’t really know what this will mean, but we do know that when they can see where the seizures are coming from, they can sometimes do a surgical evaluation to see if she would be a candidate.  This is a giant big huge deal and lots would have to happen and be evaluated before we ever got to that point, but at least we are a tiny bit closer to be able to do SOMETHING about these seizures.  We feel so helpless at times and we want to know we have exhausted every single avenue of treatment so that one day (hopefully sooner than later) we can say we killed the seizure monster.

Not really in her happy place

Watching Cailloux - nothing else to do when she's all hooked up!!!

EEG Hair.

Leaving the hospital and still pretty unhappy about the whole EEG thing!!!

24 Hour Video EEG

I have posted recently about the movements Peyton has been making that are suspicious for Infantile Spasms.  We have slowly increased her Vitamin B-6 to 200 mg twice daily to see if that would help but it really hasn't so her neurologist has suggested she have a 24 hour Video EEG to determine if this is what she is having.  She will be admitted to the hospital for it and we should get a call tomorrow to head that way when a bed becomes available.

Sometimes our life feels like a Tug-of-War.  Mackenzie (our sweet 11 year old) starts Middle School tomorrow.  This is such an important time for her and I want to be there for every single second and I will get to drop her off in the morning but I will probably be gone already by the time she gets home and the only way to hear about it will be on the phone.  I want to see her sweet face while she tells me about it.  I also want to be able to hear about big 4th grader Blake's first day (although it will be like pulling teeth to get him to talk much about it!!)  I feel so conflicted.  Peyton's health, of course, is of vital importance and it is urgent we have this EEG done so we know if she is having Infantile Spasms again, but I'm so frustrated that I can't be there for the other two kids.  I feel like we juggle juggle juggle (as all parents do!) but then the juggling act comes to a screeching halt while we deal with yet another health crisis.  We are blessed to have amazing family & friends who jump in at a moment's notice to help out, but I can't help but feel like my failure to juggle it all is an indication of my failure as Super Mom.  Thank goodness this sub par Super Mom has Super Dad, Super Grandparents, Super Nurses and Super Friends to help out with the juggling act.  It TRULY takes a village.

Please keep Peyton in your prayers as we travel to Chapel Hill for the Video EEG.  This will be her first EEG in over a year and I'm not sure she will be as compliant as she has been in the past when having these done.  Should be interesting.