Christmas Seizures

We were so excited about Christmas time, but as soon as Christmas break started for the kids, the illnesses started. I (Amelia) was sick with an aweful head cold, then Ken got it 2 weeks later.  Annelise got the fever and throwing up from about Dec. 22 to Dec. 26.  Liesl was ill also during that time, but not as bad. David got it right after Christmas and had it for a week - probably the FLU.  He wanted a re-do on his Christmas break.  But, as we've discovered, if Charles gets ill, that usually leads to seizures.  Sure enough, right after cooking all day Christmas Eve, and heading  to Grandma's house for dinner, it became clear we would have a quiet dinner alone.  Ken and I and Annelise and Charles stayed home, but Liesl and David went to family dinner at Grandma's house.  Charles had a fever and seizures, including a "tonic" seizure - only his second to date.  We went to Walgreens on Christmas Day to get more of his "emergency" medicine - Clonazapam (same family as new daily Clobazam) but more fast acting.  Grandma Dianne Greaves gave Charles new pajamas that she MADE him for Christmas...that was a highlight that day for sure!  Here's a picture of him on Christmas Eve in his new jammies.  At one point, we had planned to drive to Utah for a week after Christmas, and are SO glad we had already cancelled that trip - with ALL the illness and poor little Charles' episodes.

Medicine #2 was shortlived...We're on medicine #3 now

So, after a disasterous 1 month on Topamax, Dr. Levisohn switched Charles over to Clobazam in the hopes that his side affects (weakness and tremors in his legs) would stop and in general, he would have fewer seizures and issues.  Well, that worked for 3 months and we thought a miracle drug was in place, so much that our first line in our Christmas card talked about how thrilled we were about how he was doing.  We should have knocked on wood. More to come...this picture is from his Dr. appt. at Children's Hospital the first week of December with Dr. Levisohn.  He likes to fall asleep on the way to this appointment, many times.  Cute kid - he stays asleep from the valet guy to the stroller to the department.

24 Hour EEG

The day after David's 9th birthday and 2 days after Annelise and I got back from our Florida trip, Charles and I check into Children's Hospital for his 24 hour EEG stay, where neurologists view him on video in his room all day and night to see any brain activity and actually get to see him and what things look like when he's having a seizure or tremor or general weakness.  It was a LONG 24 hours, but Charles did great.  The floor has books and activities and movies for the kids that the nurses and volunteers bring to his room.  In addition, a friend of mine (Courtney Clark -- Marianne and Heather's sister from Willow Creek Ward) was there with her son and they had been there for 6 weeks, so I really couldn't complain.  It was nice to see a friendly face.  Charles had a couple of seizures but they did not show up in his brain on the EEG as a "typical seizure" so once again, Charles is a MYSTERY. 

I took lots of pictures, he was so cute the whole time!!!

Switching to a new Medicine

Today's appointment was with Dr. Levisohn - his new main neurologist (Very senior-level neurologist who we first met at Charles first ever appointment in the ER when he was 5 months old).

I was explaining that we still thought he was a little too agressive (throwing things, etc) and that it was probably due to his medicine (at least we hope he has a reason).  He spent 15 minutes with Charles and said "you have a very difficult child"...in the nicest way possible.  He agreed that Charles was agressive and busy and that it might be from the medicine.  He also thought (as we have) that he was "failing" his medicine he's been on for 2 years because he's still having seizures on occassion even though we give it to him every day, twice a day and VERY rarely miss a dose.

So, he recommended we move Charles to a new medicine (old was was called Keppra) called Topamax.  He said the main side affect is it can cause kids to sweat more in the summer, so you have to keep them better hydrated with more water when they're outside.  We haven't seen that side affect as of yet (and now with Fall might not).  There were a couple others, but nothing too alarming.  However, you don't just take a child off one and put them on a new one, when it comes to seizure disorders - so for almost 2 months he's on both.  Slowing building up the new one for a month, then slowing going off the old one for a month.  Fast Forward 6 weeks...

It's now October 1st,  he's been on Topamax for about 4-5 weeks now and he has about 2 more weeks of a lower dosage of Keppra to go.   In his legs...He has had some seizures, weakness, and brief bouts of paralysis (like 1-2 seconds) in his legs (I think primarily his right leg) probably a couple hundred times over the month of September 10-20 per day).  He's fallen almost every time.  I feel AWEFUL for the poor kid.  He's getting a sense of what is wrong with him this summer/fall and using the term "mommy, my foot hurts" - when he senses the tremor or weakness or paralysis in his foot/leg. 

Obviously, I was concerned - Ken and I thought it might be because he's on 2 meds at once and possibibly overdosed.  I called the neuro department several times in the last few weeks.  They said just keep plugging along with the meds.  In addition, one of the on-call neuro docs (since mine was out of town) recommended a 24 HOUR EEG where you check into the hospital and get hooked up with the wires and stay in a room for 24 hours.  Because during past EEGs that only last an hour, they really haven't been able to "record" them.  I was hesitant, and requested Dr. Levisohn sign off on that idea first.  He did when he returned from vacation this week and so they called me to schedule it. 

I will be taking him to Children's hospital next Wednesday (Oct. 10th) checking in at 1pm and staying overnight till Thursday at 1pm (about).  He's not allowed to leave the room (although he can walk around the room), so we're going to pack up a LOT of entertainment, as you can imagine.  Ken is going to work from home Wednesday all day and Thursday till 11ish.  So if you want to stop in and see us you can (or help Ken/Grandma with other 3) :-).  Charles will be on camera for the whole time as well being evaluated and a neuro doc will analyze the video and any seizures that show up on the EEG.

Wish us luck! I'm worried about it.  It's going to be really tough on Charles to be hooked up that long.

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.