It was a beautiful sunny, summer day and the kids and I (Jenee) were on our way to the pool like most summer days. Briana, 10 yrs. old, Michael, 6 yrs. old and Landen, 7 weeks old.
Briana had noticed some weird things going on with Michael before we left for the pool. She saw Michael fall several times and "zoning out" as she called it.
Briana was worried and upset and insisted I call the doctor. I told her it would be fine and what would I say anyway? Just keep an eye on him at the pool. Luckily things were fine at the pool and upon arriving home, I told the kids I was going to shower as they played on the computer.
That is when our lives changed...June 17th 2008.
Briana started screaming...call 911. I ran down from the shower.
As I approached Michael, he was lying on the floor in full status convulsions, eyes at the back of his head with blue lips/face. He was having a grand-mal seizure. My daughter called 911 as I carried Michael to the couch checking his breathing and calling his name to come back to me.
What seemed like a lifetime, the paramedics arrived minutes later. After poking and prodding, they took Michael, Landen and myself to the hospital. Briana decided to stay with the neighbors. Once we arrived at the hospital, Mike, my husband met us there.
The ER Dr's did a mirage of tests but could not find anything wrong with Michael and he wasn't having any more seizures. About 4 hours later, they sent us home.
It was about 8:30pm and Mike went to get some food. Michael was on the floor playing happily with his legos watching Star Wars. I (jenee) was actually on the phone with the pediatrician when Michael suddenly fell backwards and starting having another grand-mal seizure. I was terrified. The doctor instructed me to calm down as she timed the seizure. It lasted about 1min 30sec. Just then Mike walked in struck with panic with food in hand...
The doctor instructed us to take Michael to Childrens hospital. Instead, we called 911 again. Needless to say-the paramedics arrived within minutes-they were awesome!!
Michael had an EEG in the am & the neuro team arrived around 2pm. It was a team of roughly 5 Dr's. I remember them checking Michael out and then asking him to walk and then run down the hall. His balance and coordination were completely off, he was not himself. Tears were streaming down my face.
Michael was stable enough to be checked out around 4pm on 6/18. Upon checkout, the neuro team pulled me aside and told me the following:
1. We don't have any real answers...his sz's are generalized so they can not be pin-pointed
2. He has about a 25% chance of having another sz
3. If he does-you need to be able to deal with it-so you don't have to come here everytime
4. If the sz lasts longer then 5 minutes or he isn't breathing-call 911
5. Other than that-if he has a sz-time it and try to document it-call us if you have any questions
I started to keep a spreadsheet to document the sz's that Michael was having...we were calling the neuro ward almost daily at Children's hospital to keep them updated with our documentation.
While driving home toward the end of June we were on the interstate 25 when Michael had a grand-mal sz. I was driving-my wife was screaming to pull over-I was yelling at Briana (10 yr old) to time the sz and then yelling at my wife that we were 5 minutes from St. Anthony's...I got off the highway and pulled into the ER entrance of St. Anthony's...we decided not to go in-we were dealing with it. He was breathing again.
From July 4th - July 12th: Michael was having about 15-20 sz's per day...those were the ones we saw...so it was probably more. He was having drop attacks were he would just fall to the ground, as well as absence sz's were he would just "zone out."
The neuro team was concerned and wanted him back in for another EEG on 7/14.
That morning 7/14, I was helping him brush his hair and teeth and he had a sz. I literally caught him in my arms as he fell. He stopped breathing for about 20-30 seconds, we put him on his side and watched...he was blue...but started to breath again within 20 seconds or so. Took him to his EEG appt in the am.
Dr. from Children's called back that afternoon...his EEG had changed. The Dr was a little vague. I asked a lot of questions-eventually the Dr told me that based on his various sz activity, this put Michael in another class of epilepsy.
July 15th: Got the call from the chief at Children's-his Dx: Doose Syndrome / MAE.
The next year was hell. I don't even remember all the drugs Michael was on at this point. We were starting to see upwards of 100 sz's per day. Had to put Michael on Ativan and Lorazepam to stop the seizures. It was like watching a drunk kid, he couldn't walk or say his ABCs. Heartbreaking to see your child like that.
Took a couple of days off from work and Michael and Dad flew to Boston to go to Mass General to see their specialists.
Learned about a potential new treatment (diet) LGIT. Why not-let's give it a try.
No luck yet-Michael was showing signs of cerebral palsy at times...I remember a call with one of the Dr's from Children's-all he could say is he remembers Michael and he is "so sorry were going through this." Doose Syndrome presents in roughly 3-5% of all epilepsy cases.
Jenee was putting Michael to bed, and he said, "I hope the angels come again tonight." My wife said, "what do you mean honey?" He said, "angels have been coming in my room at night and touching my head." Jenee came back to our room to tell me what Michael just said. We both were in awe.
The next night I put Michael to bed and asked Michael if the angels came again? Michael said "yes."
I asked Michael if he talked to the angels, if he saw the angels-he didn't, he said "he just felt them touching his head."
This happened two nights in a row in late May.
After up and downs of trying a variety of meds, (Keppra, Lamictal, Banzel) and diet, Low Glycemic Index Therapy, we finally started to gain some control around our new normal.