Hey All,
We went to Duke for a follow-up appointment today. Gabrielle weighed 19.6 lb! This is an impressive gain after weighing 16lb for so many months. The doctors thought she looked great and felt her left sided weakness had improved.
They were a bit surprised to hear Gabrielle is off all of her meds. Dr. Gallentine said I’m trying to give him more gray hairs. We discussed the pros and cons of meds and I stated that I feel comfortable leaving her medication free because I don’t believe the meds are responsible for her improvement. I believe she was healed. He agreed the meds didn’t seem to help her much and that they can effect development. He said the norm is to keep them on the meds for 1 year following surgery but since she is doing so well and we are comfortable without them she can stay off of them. He said to continue physical therapy and we’ll see you back in 6 months.
Dr. Gallentine has been a wonderful doctor through all of this! He listens, informs, and always includes the parent in the decision making process. We have had the best experience with him and Dr. Grant. They truly care about their patients.
Gabrielle has learned two new tricks this week which I must share. She started clapping her hands and she learned to play peek-a-boo yesterday at the grocery store.:) She knows how to make her Mama’s day!!
That’s all for tonight!
Kelly
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November 16, 2007 at 7:26 pm
Shasta Jones
Hi Kelly…
My names Shasta Jones and my husband and our 2 kids are from Indianapolis.
I was trying to find information on cortical dysplasia and ran across your story.
And it was strangely similar to ours.
I was wondering how things were going with your baby girl.
We are trying to get the ball rolling for a surgical evaluation for our daughter Riley.
Long story short…
Riley was born 1-17-07 completely health…8 pounds 22 inches.
Then around 4 1/2 months old…she started having seizures.
Very mild…in just one leg.
She saw a Peds Neuro right away. They did an EEG which showed seizure activity.
And an MRI which was normal.
He started her on Keppra..which worked great for about a week, then the seizures started coming back. So of course we increased the Keppra…many times. Then started Phenobarb. which really didn’t work all that much…then we started Trileptal..which worked alittle. By now her seizures are changing with every drug increase/change. But her seizures are only when she’s sleeping. Seizure free while awake.
Then we did all kinds of blood work..nothing. We did a 24 hour video EEG…Which she had 19 while we were there…And her dr…says she has Frontal lobe epilepsy. Which we already knew..but felt better it wasn’t infantile spasms…or something else.
So now we’ve taken away the Keppra and has started Felbatol…last drug to try before evaluation for possible surgery. Which the Felbatol seems to not be working…(3 weeks on it)
She is 10 months old…But with her gross motor skills she’s about 5 to 6. She was progressing fine until the seizures started…now she’s just so tired and sore from the seizures all night that she doesn’t want to do anything.
I guess I just needed to talk to someone that has gone through this with a baby……
I hope thing are going WONDERFUL for Gabrielle.
And I hope to talk to you soon.
Thanks for listening
Shasta…from Indy.
shastajones1818@yahoo.com
After reading your story I feel like there IS hope.
November 22, 2007 at 2:47 am
Kelly O'Melia
Hi Shasta,
I am so sorry you are going through this with your daughter. I know I had never cried so much in my life.
It is incredibly difficult to watch your child deteriorate before your eyes.
Surgery sounds like a scary prospect but if your daughter is a candidate then it can be a chance for a cure 50-75% of the time. Our surgeon said the younger the surgery is done the better the outcome because of neuronal plasticity. When our surgeon opened up our daughter’s skull he said she was having almost continuous seizure activity. We were not seeing all of them because some were subclinical meaning you can’t detect them through observation. Our daughter had a large area of cortical dysplaisa in her right frontal lobe. The surgeon basically removed all of the lobe except the motor strip.
We too tried Keppra, tripleptal, amd phenobarb. None of them seemed to help. I will email you my phone number in case you ever want to call me with questions.
There IS hope!!
Kelly