Tuesday, May 5, 2009

We just got back from BCCH. Benjamin is still having seizures:( But they can’t give him the steroids as he has a cold and it is too risky to start steroids while he has a cold as the side effects could cause the infection to worsen. So we are starting a new drug called Topiramate. But this drug only has a 15% chance of working. They are continuing the Vigabatrin as it did lessen the seizures. They are going to try both drugs together to see if this will cause the seizures to stop. We also learnt that Benjamin will have to be on medication all his life for these seizures. There is a small chance that they could go away with time but this rarely happens in children with previous brain trauma. There is also the possibility of the seizures turning into another type of seizure. The goal right now is to try to control the seizures with medication. We are feeling a little overwhelmed as there is not a lot known about why infantile spasms start or how the medication even works to control them. We continue this medication for 6 weeks and then have another EEG and meet with the neurologist again.


Betty said...

Wow, a lot different than what was expected! I'm glad Benjamin got to return home, but this all sounds so uncertain. How sad that he'll need medication for seizures his whole life, but hopefully something will work to control them and still be safe for him to take. Take care, you guys; I'm praying for peace as you sort this information all out for Benjamin and yourselves.

Anonymous said...

Dear Greta & Gary:
Thank you for updating your blog - we appreciate the detailed reports of how things are going.
We are thankful that there is medication that they can use - though we can understand the concern.
We will continue to pray for you all. And if there is anything we can do please let us know.
Lots of Love Aunty Caroline,Uncle Peter, Caleb & Hannah Langbroek

Martin and Wieska said...

Praying for you all - especially for patience, peace and strength as you work through this.

Michelle Vandepol said...

hugs and prayers. you guys are doing a great job parenting! :)

Heather from Ontario Canada said...

Thanks for the update. You have had many trials in your young lives. I pray God continues to strengthen you in the days and years ahead.