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Living with epilepsy - Introduce yourself & meet others
Epilepsy & Seizures | Last Active: Jun 29, 2023 | Replies (462)Comment receiving replies
Thank you, Leonard! No, she has never had any of those tests. Nor has she seen any other specialists. The difficulty is where we live and the fact that she is on medicaid. There is only one adult Neuro in a 50-75 mile range that will accept medicaid. Yes, she is dx'ed epileptic and she has PDD-NOS (pervasive developmental disorder - not otherwise specified). She has an anxiety disorder and also sensory disorder. She takes Zoloft for her anxiety. Had 4 years of occupation therapy for her sensory DX. Yes, her seizures are Tonic-Clonic, and pretty violent. No, she doesn't bite her tongue or cheeks. Yes she has a medical bracelet, that also states she is allergic to Lamictal. That was not a good ride to the ER! The reason she is only on Depakote is that all the others were tried and didn't work or put her in a bad state. Depakote alone has controlled her seizures. I take all precautions with her, she takes showers only, wears a life jacket in the water, etc. No one ever told me anything! I was the one who through research found her needs and other dx's at 10yrs old. Doctors never seemed to go further than epilepsy, Or even giving me advice or other tests she may need! It's been a long and difficult road for this mother and advocate! She has an appt. today with her Primary. I called him yesterday and he got her in today. He is really good with her.
Thanks again! jb24
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@jb24
I want you to know that I have the greatest respect for you and although I don’t have any hands-on experience in the situation that you’re in, I have had some caregiving experience. At 58 my father was paralyzed from the neck down (Quadriplegic.) I took care of my mother for a while including seven months while she was bedridden and I am my cousin's conservator and trustee, he’s developmentally disabled.
Anxiety and depression are unfortunately quite common in people with epilepsy and are triggers for seizures in some people.
Are the doctor sure that her seizures are caused by abnormal electrical activity which would be Epilepsy or could her seizure activity be brought on due to her anxiety or other psychological reasons which may well be psychogenic none-Epileptic seizures.Although if your daughters seizure stopped when she started her medication then they wouldn’t be psychedelic. However people can have both psychogenic seizures and epilepsy at the same time.
I have a question, does the Zoloft help your daughter? My cousin takes that and I hate the fact that he’s on it. I suggested to his caregivers that they go buy some capsules and fill them with sugar and get rid of the Zoloft and see how he does for 10 days or so. They had him on some antipsychotic medications which when I found out I put a stop to and the only thing they ever accomplished was to give him a movement disorder.
I wanted to tell you something else but I went to do something and now I forgot what it was, probably wasn’t important anyway,
Take care,
Jake