Charles is Loving Summer

Charles has spent the better part of his summer in either bed or at the pool.  He loves summer.  It's lazier - which is more his speed.  He's not a fan of big outings, too many people, or too much noise. 

It was just a little cold!

Last night I was taking Annelise to hula dance class when Ken called to say Charles had a slight fever and was having seizures.  It was a minor cold, but because he's so sensitive to being sick, he got a small, short lived bout of tremor-like seizures.  Ken gave him some fever medicine and it came right down and didn't return.  He also gave him his clonazapam, which he only gets if he's actively having them.  They stopped the seizures and they also didn't return this week.  I'm so happy it was short-lived.  However, two sad things.  First, now he can talk to he was saying to Daddy, "I'm scared Daddy, I want Mommy"...he kept repeating he was scared.  Which is how I've always described his seizures since he was 5 months old, but now he can articulate that on his own.  Second sad thing is that every time he has a seizure the "clock starts over" - meaning he has to be on daily medication for 2 years without having a seizure...so the EARLIEST he would be done with seizures is age 4 1/2 and that's assuming he NEVER has one again, which at this point, I would consider very unlikely.

The dr. did mention at this summer's quarterly visit, that some kids outgrow it by the time they are in their early 20s.

June Quarterly Check - The Handoff...

This summer's quarterly check was bitter sweet...our primary neurologist was leaving Children's Hospital as she finished her residency and moving to Wisconsin.  Charles was her last appointment of the day on the Dr's last day of work, but we didn't feel rushed.  The Dr. explained Charle's history in great detail (much of it from memory) to her boss, one of the heads of the Neuro deparment of Children's Hospital.  Charles will now go to a new Dr. going forward - Dr. Paul Levisohn (very senior Doc).  At this appoinment it was also somewhat dissapointing because the finally were using the term "epilepsy".  In past visits they avoided (I'm not sure intentionally or unintentionally) using that word, but in reality that's what it is - Charles has a form of epilepsy.  They are still unsure what type, but it's looking more and more like he will not out grow it in his early childhood years as originally thought - Benign Infantile Myoclonus is probably no longer the issue. 

Because he had a set back in May, once again, they upped his meds.  Also, they upped the quantity because he had gained more weight.  He is now at 4ml twice daily of the Keppra.

I Told You So...May 2012

So this month, I made a decision to babysit a friend's kids 9 hours a day for 2-4 weeks.  My sister told me that she thought it might be a little too much commotion for Charles.  Well I got an "I told you so...".  After a week or two of having 2 extra kids all day (who were GREAT kids by the way, and much easier than my own), Charles had had enough and started having seizures.  They didn't last long, and were over the same day. Actually, Aunt Sheila didn't say "I told you so", but she could have, I would have permitted it...she was RIGHT.  It's okay, I found out I'm not cut out for "day care" on a long-term basis.