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.

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.

Quarterly Neuro Check

The day after Charles' ear check, he had his quarterly neuro check with his neurologist at Children's Hospital. Though we were dissapointed to know his doctor (Meredith Schultz) is leaving Colorado in June, we were pleased to hear that his doctor could be the very-senior neurologist who Charles first met the first time he was ever in the hospital with seizures. During this evaluation (which he idealy has quarterly) the doctors noticed something that I hadn't really ever before. When Charles runs, he swings his left arm as he should, but his right arm stays bent, slightly back, and doesn't really swing. As a result, the doctors think it's still possible he has this "Cortical Dysplasia" - because if he's having symptoms in ONE side of the body, it can mean there is "something" in the OTHER side of the body - so in this case, a possible blip (if you will) on the left side of his brain. This doesn't really change the treatment - it's still his daily medicine to prevent seizures, but it would mean he wouldn't outgrow it (as he would if it was just the infantile benign myoclonus). So, if the medicine manages it, they don't change anything. However, if he "failed" the medicine and failed a 2nd medicine....THEN, they would consider surgery to remove the cortical dysplasia. However, that's somewhat unlikely to ever get to the point. "Failing" a medicine means that even when the child has his medicine everyday, he's still having seizures - meaning his seizures aren't controlled with medicine. So, in total, you have to fail 2 different kinds of medicine to even be considered for surgery. We obviously hope to NEVER get to that point. However, if we did, then the seizure disorder would be theoretically "cured" if it was cortical dysplasia AND it was removed. Well, I'm trying to get pics from this appointment up, but I need to upgrade how much memory, apparently. On April 24th, Charles has an evaluation with a pediatric physical therapist to see if he would benefit from some physical therapy for the apparent OR potential weakness in his right side.

Ear Check - Post Tubes Surgery

In March Charles had tubes in his ears - after Mommy spent a fair amount of time putting the doctors in order to get it done! Anyway, today Charles had a post tubes check up to see how he was doing and to make sure they looked good. The Dr. made the point of getting in a dig about how she's got her "New York" game back on "except without the yelling" - well, a mom's gotta do what a mom's gotta do lady! :-) Charles' ears looked great and they were healing perfectly. Hopefully that continues. Ken feels strongly that if the ears are good, then Charles won't get ear infections, potentially causing him to be sick and thereby getting seizures. We'll see, time will tell. I'm looking forward to Kaiser getting specialist offices in the south end of town this year or next so we don't have to drive to the Franklin building just for an ear doctor. During his appointment, Charles had another ear test and his hearing had improved! So, that's always good news. He enjoys the fish tank at the ENT's office.