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.

Non-Emergent EEG (3rd one) in Parker

In December Charles had a non-emergent EEG repeated to see if anything had changed from his December 2011 seizures. Grandma Dianne came to the rescue to help take care of Charles during this procedure - she brought her trusty iPad and showed him videos, etc. Once again, thanks Mom!! And, Thanks Aunt Cami for watching Liesl that day. It takes a village to raise Charles. :-)

Charles got to play with some cool toys in the waiting room first. The smile is when he was SO excited that the tech was taking the wires off. I have to say, at first I was leary that there was only 1 tech assigned to do the EEG on Charles, and that since it was outpatient and not done at Children's, I wasn't sure it would go very well, but this tech did a great job. And, so did I keeping him happy for 1 hour. Thank heavens for iPads, books, stuffed animals, and MANY different snacks.

Grandpa's 70th Birthday Weekend...and of course a seizure weekend too

My Dad (Charles' Grandpa) turned 70 in December 2011. His brother and sister and their spouses came to town for the party - Uncle Tom & Aunt Vylee and Aunt Janet & Uncle Eric. Being Jachs, we had to add a little drama to the already busy weekend. But let me back up first. As Charles parents, we have spent his whole life making sure his naptime is the PRIORITY...as we know his rest is so important to help avoid seizures (which we've decided are brought on by a few different things - overstimulation, under-rested, under-medicated, ear infections, etc.). So, for the first time in probably 14 months, we let Charles "stay up late" and "party" with the family for my Dad's 70th. Well, we thought we were getting punished for it when we ended up in the Children's Hospital Emergency Department, yet again (I think that's 4 times now). However, after visiting with the docs, we realized that since it had been his last appointment with Neurologists, Charles had gained 10 lbs, but yet his Rx had never been increased - so he was being under-medicated. At that point, they raised his Keppra amount again - almost doubling it - to 2.5ml (originally 1.3).