Monday, January 07, 2013

Happy New Year! Latest follow up at UCLA

Happy New Year!

We had a lovely Christmas and New Year's Holiday.  Jenelle really enjoyed playing with new toys and just cuddling with family.  I share photos from the holidays at a later time.

Jenelle had a follow up appointment at UCLA today with Dr. Shields.  He was pleased with our report that her seizures have been under control with Onfi.  I told Dr. Shields about Jenelle small regression on goals from her chaotic seizures earlier this year and that I wanted to give her some more time to catch up.  He agreed that it is good to have the seizures under control, and thinks it's time to see if we can wean her off one of her medications.  I felt that when we tried to wean from Vimpat earlier this year, it made her seizures worse, so we both agreed that Felbatol is the medication we should try to wean.  Felbatol has the worst side effects with potential damage to her liver and other organs, and she's been on it the longest.  Dr. Shields also feels it is important to get off Felbatol before she officially starts puberty.  So, we are going to slowly, very slowly start to decrease her Felbatol to see if we can lower the dose and maintain seizure consistency.

Everything else was good for Jenelle - she weighs 68 pounds and is 53 inches tall.  When Dr. Shields walked into the room, Jenelle reached her hand out for his.  It was very sweet.


Karen Nichols said...

Kelly-been following your blog for a long time. My son Thomas has been on Felbatol for almost 3 years, and I was wondering why Dr. Shields felt it was important to have Jenelle off Felbatol before puberty.


Kelly said...

Hi Karen! Felbatol can adversely affect platelet counts, and when Jenelle begins mensus, it could become an issue. We've continued on Felbatol for almost 6 years without ever having an issue with blood counts, but of the three anti-convulsants she is taking, it has the worst side effects, so it's the obvious choice. :)

Unknown said...

Hi Kelly
I'm so happy to have found you! My nephew is 7 months and they has IS.
Wanted to know if Dr. Sheilds is still in UCLA, and if yes how do we get an appointment to see him ? Is it a long wait ? Any direct number ?
I really aprraciate your response .
Thank you so much .

Kelly said...

Hi Hoda! Dr. Shields has retired, but UCLA is still a great place for Infantile Spasms. Here is the number to get an initial appointment 310-825-6196.
We have not been with UCLA for 2 years, so I'm really not familiar with the wait time, but if you mention a diagnosis of IS, they usually try to fit you it as time is of the essence. Best wishes!