Heather C.
Diagnosis: Intractable Epilepsy
Heather was taken off of the medication (Lyrica) that she was started on last update. It was taking her ability to walk, talk, and even hold her head up. Once we figured that out and talked to her neurologist he put her back on the meds she had been on. After doing that she recovered her baseline abilities. We also started her on lupron to stop puberty which we discovered was making her seizures much worse. So far it has helped. This month she hasn’t had the horrible seizures related to her cycle and she hasn’t had a cycle which was part of the goal.
In August we were filmed as one of the families in a documentary about Lennox Gastaut Syndrome, this should be released in November. We don’t know where yet though. We are anxiously waiting to find out. Unfortunately the same week that this was taking place the seizures that had been gone since her surgery also came back, with a vengeance. So we have been once again battling tonic seizures and an occasional drop seizure. It was nice for the few weeks that she was able to go with out her helmet. Now she is back in it all the time for fear of another head injury.
We are again getting ready to start another year of homeschooling. Despite hopes of her being more medically stable she is still too fragile to attend school. Her sleep patterns are too far off and therapy is still daily, she has come a long way since her brain surgery but she has a long way to go still.
In October we will go back and talk to the neurosurgeon and discuss a second brain surgery as her seizures are continuing to occur and only getting worse again.
Denae (Heather’s mom)
Heather C.
Diagnosis: Intractable Epilepsy
April 12th Heather had brain surgery (a corpus callosotomy) for her seizures. She was in the hospital for 15 days. Right after surgery she didn’t open her eyes or talk as soon as we expected. Thankfully, she did eventually. She went to inpatient rehab for about a week then she started walking with assistance. She is still working on eating all the foods she was eating before again. While she was in the hospital she had a two and a half hour seizure that wasn’t like any we had seen before. Since that one she has continued to have more just like it. Unfortunately the seizures she is still having are constantly changing and presenting in new ways.
The seizures that the surgery was supposed to stop have been stopped so far. She does continue to have seizures though. The complex partial seizures have gotten a little more frequent. Right now her neurologist is trying to find a combination of medication that will slow down the seizures. She just finished a course of steroids again which helped briefly. Unfortunately she is having a reaction to the seizure medication, Lyrica, and is having periods where she is nearly unable to walk or even hold her head up at times. That has been hard for us since after surgery she was doing so well for a short time period until the seizures started. Despite being medically fragile, Heather Riley was always an active child, her nurse and I kept her busy and always had something planned outside with her. Being unable to “do” much has been hard for all of us.
Because of the seizures coming so frequently they have had to take her off of the Vigabitrin (Sabril) that was started several months ago. The benefit no longer outweighs the risks. I have mixed feelings about it, I know I didn’t want her to stay on it since there was a significant risk of vision loss. It was controlling her seizures so much better than anything else though. It seems that the more we take away of that medication the more seizures she has.
She has physical and occupational therapy every day no matter what’s going on. Her nurse and I take her regardless. I want her to get her therapy so she can get better.
I know this is just a really rough patch we are going through, eventually, once her brain is less irritable, things will be better. So we hope.
It just seems like nothing has gone like we thought it would. The entire past three month period has been pre-op and post op.. filled with seizures, in and out of the hospital and therapies. Heather Riley has been blessed to have wonderful professionals in her life.
Denae (Heather’s mom)
Heather C.
Diagnosis: Intractable Epilepsy
I look back and read the update for just 3 months ago and can’t believe just how much has changed. We are so thankful for the 50 hours a week of RN care she gets, some weeks we use an extra 10 hours of respite. We have been blessed to have a wonderful nurse. I thank God for that little bit of simplicity in our lives, everything else is so complex.
Homeschooling has continued to be the best choice we made for her, she loves it, I love it. There are good days and bad days, she takes one step forward and two steps back. Thats the same as always though. I do what I can to keep it fun, she loves to paint and play games so we do lots of both. She got a Wii for Christmas, since the weather prevents us from being outside as much as we would like it keeps us all active. There are some games out there that actually are educational too!
As for the seizures, things went from bad to worse just when I didn’t think it was possible. Since December she has clustered into status at least 5 or 6 times. Her neurologist talked to us about surgical options when we saw him in December, it was a pretty casual conversation then. More like a “think it over” conversation. We decided to try steroids. It seemed to help for a couple of weeks. Like most treatments it didn’t last long. In January Dr.Nahouraii made the referral for her to have a corpus callosotomy. The only surgical procedure that she is a candidate for. Even that will not stop her seizures fully. Only prevent them from generalizing. The soonest she could get in for a consult was March 9th. Since it was just the first part of January we had a long way to go.
We changed her emergency medication to versed. That has worked much better than the diastat. We were amazed to see a seizure stop within seconds of us giving it. The week of 2/20 she started clustering and about 45 minutes after getting the versed the seizures started again though. She did end up in the hospital again. Dr.N has increased another of her regular medications and we have made the decision to start her on a medication that was just FDA approved, Vigabtrin. Even though it was FDA approved it is being tightly controlled due to significant side effects. According to the information the drug company gives you to sign 1 in 3 people lose peripheral vision while on the medication. We aren’t fully comfortable with this, but the alternative makes us much more uncomfortable.
When it comes to your child’s life none of the decisions we have to make are easy. We have had easier times, this is a particularly rough spot. We will get though it, I have faith that we will. We always have in the past.
Denae (Heather’s mom)
