There are no epilepsy support groups in my area. I so desperately need a friend who understands what we are going through. Also for my 9 year old baby girl so she knows she is not alone. We live west of Philly..near King of Prussia.
Does your daughter's neurologist know of any groups? Sometimes there are hospital-affiliated support groups that the docs can recommend, or parents they can put you in touch with. A CWE member -- Phylis Feiner Johnson is affiliated with the Epilepsy Foundation of Eastern Pennsylvania. See: http://www.coping-with-epilepsy.com/forums/members/phylisfeinerjohnson/ She may know of support groups as well.
My 13 year old son has epilepsy since he was 1,5 years old. I have had a lot support from parents on a (Dutch) forum for parents and have met many of them though the years. Some of them became real friends. I visited a support group for a while in the beginning of my son's epilepsy but since I found this where a lot of support and information is shared, I decided to quit visiting the support group after a while.
Hello fellow moms,
I feel like this web group is very helpful. I am a single mom of a 7 year old daughter with CAE. I come here when I feel most anxious and like to read posts about all of you. But honestly, even here I don't feel like I am similar because my child only has absence seizures. Most people don't think much of my daughter's epilepsy because they can't see her seizures and so they assume there is nothing wrong with her. I actually had a person tell me how "lucky" I was that it wasn't real epilepsy or cancer. Ha-now my daughter is making herself throw up to get sent home from school. Is it her meds making her this way? Is it the epilepsy itself or is she just really upset. It is hard to say. I know here seizures are benign, but her epilepsy is not because of all the factors that contribute to her behavior and wellness. I feel alone also because I don't know any parents of kids with my kid's diagnosis. Everything feels scary and I don't know what to do.
I don't want to end with all my whining and I actually almost deleted it. Here are the not so scary and even helpful things/people in my life: My kid is awesome, her doctor is good and the clinic she goes through is very helpful and available, her dad listens and loves her dearly even if he is not near, her grandparents love her to death. Honestly I could go on even more.
With all that good why do I feel so scared? Thanks for listening/reading. I just needed to get that out.
mymanuelita HUGS!!!!!!!!!!!!! Whinge away. My son has lots of strange smaller seiures and absence ones his dr's still don't know if he has epilepsy, he's 26 months old and we rushed him to the ED for the first time at just over 7 months old. Most of his event's are "silent" and don't draw attention to them, he has had the more physical seziures as well but they are very rare, usually its absence one's, eye's rolling back etc. Often when people meet my little man I get told there is nothing wrong with him, even my own father totally denies his condition, yet I just wish they could walk a day, a week in our shoes. I talk very openly about my sons condition as via this I have found so many others who's lives have been touched by someone wiht Epilepsy/seizures.
My son has a team of specialists who are trying to work out what is going on with him and he has the most amazing Nureologist who we see every 3 months or so but who I also email once a month or more if i need to and who emails me back. He has an aide at child care for when he has trouble and he attends child care at my work so I am never far away from him if he needs me. I too though still get scared and wonder what is comming next, I often get scared of what happen's if he remains in one of his altered states (often like an absence seziure) or if the temporary regression periods he has are no longer temporary. His speciliasts are looking at if, other than his brain lesion, a chemical imbalance is happening in his brain to cause his issues so I sometimes wonder if this is causing damage etc each time it happens. He has had 2 MRI's 6months apart so I know they are keeping an eye on things. I suppose it's just a mums "job" to worry. What brakes my worry though is the smile he gives me and all of the kisses, to see him playing with his 5yr old brother and 3yr old sister, to hear him singing "twinkle little star" in his own very funny way.
This board has helped me so much, I often "get things out" on here and also gets lots of great advice and support from other's.
Thank you Donnajane,
we just had a really rough week and I think my self pity overtook me. We are working on a plan which will help us all and that is all we can do. I hope that soon, my daughter will be feeling better and be able to do more things.
I like your positive attitude and plan of action regarding your son. That's the way to feel and do well-positive action. It is inspiring. I hope they soon figure out what is going on with your son.
I was thinking of giving my name to the clinic where my daughter sees her neurologist and telling them they have permission to give my name and number to other families who are trying to connect. Maybe I can facilitate a group in my area. Has anyone done that?