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.