Jaylenesmommy's interview
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How did all start?
Jay had her first seizure at 4 days old
Do you already have a diagnosis? How long did it take you to get it?
Yes it took about month and a half after her first seizure to get diagnosed.
For what medical specialties have you been treated? What has been the most useful specialty for your?
Neurology
What has been the most useful thing for you so far?
Keppra for seizures, therapy for muscle weakness as well as speech therapy for feeding issues
What have been your biggest difficulties?
Cognitive delays muscle weakness
How has your social and family environment reacted? Have your social or family relationships changed?
My family has been very supportive for the most part although I do have some family members who blame me for her diagnosis saying I didint take of myself, I worked too much and stressed to much.
What things have you stopped doing?
Not much yet but there are certain things we can’t take her to due to seizures
What do you think about the future?
I worry a lot!!! I worry if she’ll ever talk, or walk, how developmentally delayed she will be. Who’ll she have friends, will she be safe. Everything.
So far, which years have been the best years in your life? What have you done during them?
We haven’t gotten that far yet she’s only 5 months old but so far they have been good
What would you like to do if you didn’t have your condition?
I’m not sure maybe one day she can answer that
If you had to describe your life in a sentence, what would it be?
She’s happy and loved beyond measure.
Finally, what advice would you give to a person in a similar situation?
Find a support system! It’s the most important thing. It will help you get through your tough moments.
