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.

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.

Seizure Safety Training for the Family

http://www.epilepsycolorado.org/http://www.epilepsycolorado.org/

Last week, The Epilepsy Foundation of Colorado put on a Seizure Safety training class for families of seizure patients, held at The Children's Hospital. It was fairly basic, but still gave us a few good tips for if and when Charles has any more tonic seizures (but we're hoping and praying he doesn't), and some good questions to ask our dr. during quarterly appointments with the neurologist - for example: "naming" the type of seizures our child has...isn't that the question of the hour...as we still don't know the final answer to that, but we're hoping its just the benign infantile myoclonus, as he would eventually grow out of that.

Charles was the youngest in the class, so he was the little entertainment with his head bobbing in and out of the video/powerpoint screen. Liesl refused to go with strangers at first, but once she realized that the adult class was way too boring, she changed her tune.

Here's who attended:

• Mom
• Dad
• All of Charles' siblings
• Charles's cousins who are babysitting age
• Aunties, second cousin (also an auntie) and Grandma

Thank you everyone for coming! - Everyone who would potentially be babysitting Charles.

Anyway, here are some pics of the outing. They put on a "kids" class for the siblings under the age of 12 and did some crafts, the kids LOVED it. Afterwards, we noticed a bluegrass band playing in the lobby, so we enjoyed that afterwards :-) Then, fortiutous as it was, Charles' auntie got to visit a friend's daughter who had just had back surgery; and Charles' cousins got to see where their sister has monthly infusions for her juvenile rheumatoid arthritis - amazing, go to the hospital for training and "run errands" while you're there...pretty handy!

Tubes in his Ears...this could be the problem solver we need!

Well, ears are NEAR the brain. Anyway, Charles has had 7 ear infections in 1 year, and at some point over the last few months, I decided that maybe getting tubes put in his ears would help prevent the seizures - since being sick and overly tired can bring them on. Anyway, during his MRI last month, the neurologist noted a lot of fluid in his mastoid area and recommended we might see an ENT, I said "already done, he's getting tubes next week". She was pleased.

We have Kaiser, so supposedly all drs know what the other is doing and all records are shared. However, when we showed up on Friday the 9th for his tubes, and they did is "just before surgery" questions, all of a sudden the nurses start getting alarmed that he has a seizure disorder. Then, the ENT comes in and says that we might have the postpone his surgery - that's when Mom (I) started going a bit ballistic. Then the Anesthesiologist joined us and said they just didn't have enough information about his seizure disorder to give him the best care, at which time, I then gave them a very LOUD explanation that all this should have been taken care of BEFORE I scheduled it, starved the baby for 12 hours, woke him up early for surgery, drove downtown, had my husband take the day off from work, etc. You see where this is going. They didn't have approval from the neurologist - I said "here's her number, it's on speed dial. CALL HER AND GET IT." I told them "they were the drs, I was just the mom, so do your job and I'll do mine!" As his Mother, I was the only and best advocate he had for his care. After my very IRATE (and eventually tearful, angry) display, they produced (within about 15 minutes) a fax from the neurologist saying it was fine, etc. Then, magically the "other" neurologist (very junior) dissapeared and the "very senior, pediatric specialist" neurologist magically appeared and surgery was BACK ON! yay for mom!

The surgery went well, but Charles had a hard time coming out of the anesthesia - but that's because they didn't have to do the IV kind, so it takes a little longer. He was CRABBY coming out. When I left, I apolpgized (but not very sincerely) for the drama I had caused, and the lead nurse on staff (while walking me out) said "don't worry, it got the job done didn't it?!" I was proud of my results, Charles got his tubes, he hasn't been sick since and no seizures since...so time will tell, but I think we're headed in a good path.

Next month (April 5th) he has his quarterly neurology visit and April 6th, a post op appointment with the poor ENT I attacked. I'll let you know how it goes. :-)

PHOTOS:

Charles started by rearranging ALL the chairs in the lobby.

He had the kindle fire to entertainment, but since we had quite the delay, we got a wagon and paced the hallways of the pre-op area - he was much more patient than his mother

On the car ride home he was screamin' mad (post anesthesia) for about 25 minutes, then as you can see 1 minute before we got home he passed out drooling...he woke up to a peanut butter sandwhich grandma made him which cheered him up

The nurses put an allergy sticker on his ankle, but he was smart enough to pull it off within seconds.

MRI - the results are in...

So, the MRI did NOT show any signs of cortical dysplasia. That does not mean he 100% doesn't have it as it could just be so small that it can't be seen on MRI, but we are hoping that it DOES in fact mean that he DOES NOT have cortical dysplasia. Time will tell. So, bottom line, we're back to no absolute answer. However, as we already knew, the MRI showed lots of fluids in his mastoids (ears, etc) from chronic ear infections. Charles is having tubes put in both ears on Friday (March 9), where he will again be sedated for the short out-patient surgery. We are hopeful that if he no longer gets ear infections, that his seizures will sub-side or at least be diminished somewhat. Time will tell.

March MRI Thursday - 2nd Outpatient MRI+Venogram

Today, I took Charles to Children's Hospital Radiology Department for his second MRI. The purpose of this MRI was to see if there was this possible "cortical dysplasia". He was mildly traumatic as mom to see him go under for his general anesthesia. Babies get sedated so they can't move for MRIs. It took about 2 hours in total. He wore a gown, met with the Anesthesiologist, who held him in his arms with the gas mask until his gave up and fell asleep - only took about 1 minute but it seemed like forever. The poor dr. and nurses had to hear my version of "hush little baby" that my sister Sheila taught me...it goes something like this "hush little baby don't you cry, don't you fret, mamma's gonna stay right by my side"....more to come, gotta get to bed.

February 2012 - "The Sunday we worried about the right leg weakness"

So two days after Charles first-ever "tonic" seizure his right leg was still weak, he was either limping, dragging/swinging it around a bit, OR he was just falling altogether when walking. Since it was lasting 2 days, I called the neurologist and they recommended we come into the Children's Hospital Emergency Department yet again - making that 6 or 7 times in the ER in a year and a half. This time though we got in more quickly (because I called ahead) AND we got to see the Neurologist FIRST instead of last. They were worried that maybe he had a stroke, but that more likely it was post-seizure limb weakness. So to rule out some other causes, they drew blood (2nd time that weekend, with an IV staying in), and performed a CT scan, where he had to remain still. They found a lot of fluid in the CT scan due to his current ear infection. They also found some "calcification" in the right section of the brain, for which we have no idea of when and how it appeared. It doesn't affect anything though. During this neuro consult, we got to see Dr. Schultz again, along with her boss that day. They decided at this point, that MAYBE they would need to change Charles' diagnosis from "benign infantile myoclonus" to potentially "cortical dysplasia". The reason for this is because of the weakness in the leg, which could mean that an MRI might show the cortical dysplasia in the portion of his brain that controls right leg movement (left section, deep). In my next post, you'll find out the results of that MRI.

PHOTOS: one shows Charles helping to get his IV brace off, one shows off Charles' "prince charles" blanket Anna made him the first time he ever went to the hospital for seizures, and one photo shows Charles' being mummy wrapped to get his CT scan

February 2012, "The Friday of his first-ever 'tonic' seizure"

Charles went another 3 months (December to February) until another "spell" occurred. It was a Friday morning at 8am and we were getting the kids ready for school when he had been having some minor seizures. He and David took a bath and I got him out and put him on my bed to dress him when all of a sudden he got a NEW seizure that I had never seen before. Later, the doctors referred to it as a "tonic" seizure. It lasted about 15 seconds (vs. 4-5) and he arched his body, it was stiff as a board, and his neck was twisted to the right. It was SOOOO scary.

We quickly took the kids to Grandma Dianne's house (so they could go to school) and took Charles to Children's Hospital Emergency Department for, I think, the 5th time. We waited in the lobby for a good hour. We were disturbed about this particular visit because the neurology department did not send down for a consult to the ED, instead they just advised us to increase the meds, yet again, to 3ml twice daily. However, they also perscribed the ED docs to give an IV of 18ml of Keppra. Let me back up and say that, yet again, Charles is having ear infections at this point...a "trigger", we believe. He has has 7 ear infections in a one year period, and is now scheduled to have tubes put in March 9th at Kaiser Franklin Medical Center, here in Denver.

Charles is sporting his "tye-died" shirt that David made for him. After about 4-5 hours, we went home. He slept at the hospital for about 30 minutes - one doctor came in during this time, but I didn't let him wake Charles up to check him out - he DESPERATELY needed some sleep. We went home and he slept for 3 hours after that. The next morning (Saturday) he had a few minor seizures, but he also had weakness in his right leg causing him to fall frequently, making him VERY frustrated. I'll talk more about that in the next post. Charles took his "hospital" blanket with us - Anna (his cousin) made it for him - more pics of that later.