I havent been on here in a while, but I have a few questions and hope someone can help me out. My daughter has had seizures since she was 3 1/2 months old. She is now 10yrs old. Her Drs have been doing every test they can trying to get her ready for brain surgery. They told us that was the ONLY way to take care of it. Im so frustrated right now as I type that I am in tears from thinking about everything she is going thru. Her medications are not taking care of and controlling the seizures anymore, she is VERY limited on what she can take and she is experiencing severe headaches with all this. She is also autisic so she cant tell me exactly how she feels. A year ago we went thru a 5 day monitored epilepsy study to pinpoint where they are coming from and she has had several MRI's, CAT scans, PET scans and EEG's. They told us the seizures are coming from a very small spot on the right frontal lobe and that they could remove it very easily and take care of the problem. Yesterday she had another MRI and the spot was the same as 6 months ago and now the Dr is saying they are NOT from that spot but he doesnt see anywhere else they could be coming from. She is so pitiful!!! She cant play or even go potty without having a seizure and she is now at the point where she is wanting to interact with other children. I just dont know what we should do for her now. Is it time to find another Dr or what? Please help this very upset mommy. Thank you!!!
My Daughter!!!
- Thread starter LeighAnn
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When it comes to surgery, you don't want it to be a guessing game. I think you should go ahead and get a second or even third opinion, until you feel confident in your doctor and the treatment he/she recommends for your daughter.
Its not the question of whether or not I think she should have the surgery, Because I feel in my heart that it is the best for her. Its just that her drs are giving us the run around on everything and I just want her to feel better. As soon as possible.
Hi. I have a 10yo daughter (without epilepsy - I'm the one with it). If I felt she wasn't getting the best possible care and attention and my questions weren't being clearly answered by he doctor ... I'd find another specialist as quickly as possible! Do you have Patient Advocates in hospitals in the US? Or is there a helpful Epilepsy Foundation/organisation who could recommend another paediatric specialist?
Good luck.
Good luck.
suebear
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Okay.. let me try to break this down a little bit from what I am aware of. Note: I got a scar at birth and began having seizures infant age. This is how I learned everything personally.
I began having seizures from an infant so I am well aware of the matter on medications that cannot be taken - the majority of medications on the table cannot be because they will damage infant growth.
What I have been learned from growing up and from reading in my medical records as well as speaking from my Mom over the years the general doctor who determined I was epileptic at a very young age (infancy) was only willing to give me Dilantin because it was the safest drug on the market. As to the dosage I could not tell you as those records are not available.
I was born in 1968 so it has been very difficult to obtain medical record history. At any rate, all I can tell you is what I am aware of. Now, something that I highly will suggest is to be patient as the doctor's are doing everything they can possibly do in order to locate the cause of the seizure activity and these tests are necessary before any type of surgery can take place especially Neo-natal surgery of a neurological type.
What I can suggest is if you have questions that are not being answered, to discuss them with another specialist who works with is familiar with infants. What you also must realize is each case is different and not all patients will have the same results so what works for one will not be the same results for another. Should you be interested in a recommendation for the epilepsy unit which I visit; they have a specialty unit for epileptic issues and may be able to assist. I can provide a contact and phone number via private message. It may take me a day or two to obtain this information but should you be interested let me know.
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