Infantile Spasms - seizures

My daughter was 13 months old when she was first diagnosed with IS. (Though her infantile spasms began when she was around 8-10 months, the nurses here wouldn't give her an appt because they thought she had night terrors instead, leaving my daughter to be untreated for 4-5 months) When she turned 16mths, her neurologist Dr.Alsayouf told us it was gone - thanks to medication but when we got our second opinion when she was 23mths old with Dr.Joshi, she told us Aliyah STILL has Infantile Spasms. Dr. Alsayouf told us to go with what Dr. Joshi recommends , to start up with steroids again.......


I have been blogging about Aliyah's appts, treatment, anything related to IS online at

http://lizettehnj.blogspot.com/


Please know if any parents of IS children have questions about Aliyah and her development please contact me at lizettehnj@gmail.com. I know together we can help each other cope and give each other ideas about how to best raise our children and how to help them.

Category:

People & Blogs

Tags:

• Infantile spasms
• seizures
• head drops
• chin
• drop
• eyes
• off
• to
• the
• side
• infant
• toddler
• epilepsy

[kalilee18]

If that isn't the cutest baby EVER, I don't know what is! I never like it when people say sorry when they are told having seizures are a part of who I am, so I am not going to. Hope you find some degree of control for her. Much Love

[lizettehnj]

THANK YOU! SHE IS CUTE ISN'T SHE?? :)

[lizettehnj]

AWW THANKS!!!! YES SHE IS A KEEPER! UNFORTUNATELY - SHE IS STILL BATTLING WITH HER (now) 2 rare and severe types of EPILEPSY. SHE IS SUCH A TROOPER!!! SHE REALLY IS!

As I find spare time I have been trying to update her blog. Currently I am in the month of Nov.2011...3more months of catch up to go!

I am just trying to tell her story so that other parents can understand that they are not alone.For some time I have felt that way and am still learning to cope.

[rolllme71]

how is this baby girl now she looks golden an very beautiful and cute can i have her?

[1HisSunshine]

Awww so sad