…and some days aren’t.
The seizures have started again. We went 2 days being seizure free. I guess her levels of Topamax still aren’t where they need to be. I went to get the Klonopin but found that it’s not a common drug to keep in stock at the dosage that was prescribed. They had to order it. Dr. McCormick also wrote it is DAW (dispense as written) and used the brand name and not the generic drug. I’m not sure if there’s a difference, but the pharmacy is going to order both until we can find out Monday.
I know that watching Emma seize is hard for Jon. You can see by the look on his face how helpless he feels.
I feel the same way. There are so many days that are great. Emma gets her meds and is happy, talkative, and smiley. And then there are these days when the seizures come back.
It’s hard to watch Emma seize. The faces she makes. The movements she does over and over again. We try to do the best for our kids. Breastfeed because it’s so good for them. Make our own baby food. Try to not over medicate. Keep them safe. But I can’t stop the look of pain on her face, even though seizures aren’t supposed to be painful. I can’t stop the shivering and the repetitive motions.
I can’t fix this.
I just can’t.
Emma's Grace
bill said,
September 3, 2008 at 8:38 pm
I am truly sorry to hear about your child and all that you have and are now going through. Our daughter, Mary Grace, was diagnosed with IS when she was about 6 mo old. She has Down syndrome. As you have, we were frantically visiting pediatric neurosurgeons all over south florida. Thankfully we were given two options they felt would be the first line of treatment; ACTH and Vigabitrin. We decided to try the intramuscular injections of the ACTH because Vigabitrin was not an FDA approved drug even though Childrens Hospital in Miami would provide it for free as part of a study they were doing. My wife and I had to learn how to give the injections at the hospital and we took her home hopeful it would work. Her IS symptoms began to decrease after 5 days of treatment (two injections per day, don’t rememeber the dose) and completely disappeared within 10 days. She never had a relapse and is now 3 and a half. I just wanted to let you know our experience with IS and the use of ACTH in case you have not gone in this direction. God bless.