Today is better
March 4, 2008 at 7:13 pm (Neurologist, Seizure)
Tags: infant, Infantile Spasms, klonopin, Seizure
Yesterday, Emma seized all day. We tried the Klonopin but it didn’t seem to work. We put Emma to bed last night expecting to call the neuro this morning. Emma was still sleeping at 9am so I woke her up. At 10:30am I called the neuro, but instead of telling them that Emma was still seizing, it was to tell them that the seizures seemed to have stopped.
So far for the day, we have been seizure free. Emma’s been a little sleepy, but I expect that to happen after her poor brain goes thru all of that for almost 2.5 days. She’s even back to talking like she used to and even a little bit of rolling over.
Let’s all hope that it continues.
On another happy note, thank you all who voted for Colgate to give Children’s Hospital of Michigan an extra fun center. The winner should be announced on the website today. However, if you look at the current vote tally, Detroit is in the lead. Thanks to all of you, there will be some happy kids at CHM who really deserve the extra Fun Center!
Some days are good…
March 3, 2008 at 4:29 am (Seizure)
Tags: infant, Infantile Spasms, Seizure
…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
