Eric is a very personable young man with spastic quadriplegic cerebral palsy. He is unable to walk and is wheelchair dependent. One of Eric’s favorite things to do is to go for walks and runs with his mom and dad. Most people around our small town of Grafton Massachusetts know the familiar site of the Bissells pushing Eric around town. Over the years, Eric has had several special needs joggers, which he has either worn out or out-grown. He has again out-grown his current jogger and we have been looking for options for adult special needs joggers. At this point, Eric is 20 years old, 130 lbs and hopefully finished growing! The best solution for Eric would be a Team Hoyt running chair. But these chairs are custom made and very expensive. For this reason, we have partnered with a non-profit group called “Ainsley’s Angels” to help us organize a fundraiser for Eric. With the help of family, friends and community we hope to get a custom Hoyt chair for Eric. Any amount you can give would be very much appreciated and tax deductible. Thank you!
We took Eric to see a neurologist yesterday. After reviewing his history and test results, Eric was diagnosed with “complex partial epilepsy“. There are many different types of seizure disorders (epilepsy). So, the first step is to figure out the type, as the specific treatment depends on the type of seizure. Below is a list of seizure types from epilepsy.com:
Primary Generalized Seizures (seizures that begin with a widespread electrical discharge that involves both sides of the brain)
* Absence seizures
* Atypical absence seizures
* Myoclonic seizures
* Atonic seizures
* Tonic seizures
* Clonic seizures
* Tonic-clonic seizures
Partial Seizures (seizures that begin with an electrical discharge in one limited area of the brain)
* Simple partial seizures
* Complex partial seizures (Eric)
* Secondarily generalized seizures
As mentioned previously (Seizures and CP), kids with CP are at higher risk of having seizures, also puberty and/or growth spurts can bring on seizures. Eric fits all of these criteria. I was surprised to discover that Eric weight 116 lbs! He has gained 16 lbs in just a few months!
The plan is to start him on Trileptal today and see how he does with that. Trileptal is an anticonvulsant that works by decreasing nerve impulses that cause seizures.
After a busy morning at the hospital, Eric got to go to Disney on Ice at the DCU center in Worcester last night! He is a big Disney fan and especially loves the princesses. Disney on Ice is fun for him. He’s been a few times and knows what to expect. He can make noise without bothering anyone and the music drowns out any crying babies that might bother him.
I took Eric to pick up his new braces yesterday, new AFO’s (ankle-foot orthotics or in layman’s terms, leg braces) and a new body jacket (a brace to help in sit up straight). Unfortunately, his AFO’s have to be redone, because they were not made correctly. It’s a silly system really. If you need an orthopedic device, first you need an order from the doctor, then you take the order to an Orthotist who measures and sometimes – as in the case of AFOs – casts the feet. Then the casts or a scan of the cast is sent off to a company where the braces are made. Then they send them back to the Orthotist, who can then make minor adjustments. Years ago, the braces were made right there in the Orthotist’s office, so he/she had much more control over customizations. But now, with the current system, if there is a mistake, the braces have to be re-done. Seems wasteful and time consuming, not to mention getting all of this approved by insurance. Nothing is every easy with Eric…Will have to wait a bit longer for the AFOs.
We did get his new body jacket. It will take some time for Eric to get used to the new jacket. There is a break in period were we have to watch him closely for redness and/or irritated skin. Eric has kyphosis; his upper spine is bent forward from poor posture. Because of his cerebral palsy, he doesn’t have the strenght to sit up straight in his wheel chair, so he wears the body jacket to help support his torso, along with straps on his chair.
I was surprised to see how much Eric has grown in a relatively short time. I think he has had his old body jacket for about 18 months and just look at the difference in size! No wonder I’m having trouble lifting him! (old brace on the left, new on the right – well, obviously;-)
It was not a totally ideal study, because Eric didn’t fall asleep and because he was moving a lot. Nonetheless, there were no abnormalities that looked like they might have caused his seizure. So we will just wait and see if he has another. If he has another seizure he will see a neurologist.
As the doctor told us, everyone is allowed one seizure before starting medications. Could have been a fluke, although unlikely for Eric because of his cerebral palsy. Still we are hoping this was a one-time episode.
Eric had his first seizure yesterday at school. As many as half of kids with cerebral palsy (CP) have seizure disorders. I was optimistic and hoping that we would avoid this complication with Eric. So, although it’s not all that surprising, it is disappointing. I got a call from the school around noon-time that Eric had seizure activity that lasted about 3 minutes. He also turned blue and stopped breathing for several seconds; common with a seizure, but still very scary.
He was taken to UMass Worcester via ambulance where they started an IV and did a bunch of lab work. Once in the ER, Eric fell asleep, which is unusual for Eric, but again common after a seizure. The doctor also ordered a CAT scan. We ended up spending 7 hours in the ER, most of that time was just waiting to have the CAT scan. Every time Eric would get to the top of the list, a trauma case would bump him. Finally, his nurse decided to take him upstairs to in-patient radiology for the scan. All things considered, Eric was on his best behavior at the hospital, but I knew there was no way he would stay still for a CAT scan. So, they gave him Versed IV for the scan.
His labs were all normal and the CAT scan showed enlargement of the ventricular system, which is Eric’s base-line, but no other abnormalities. So the plan is to follow-up with Eric’s pediatrician and see a neurologist. He will need to have an EEG (electroencephalogram) and probably start on seizure medication. It is possible that this was an isolated episode, although I’m not getting my hopes up, since seizures are so common for kids with CP. I’ve also read that sometimes puberty can bring on seizures for kids with neurological problems who were seizure-free before puberty. So, one more diagnosis to add to the list…
We finally got out of the ER at 9pm last night. I will keep Eric home from school today and watch him. Here are a couple of camera phone photos taken at the hospital.