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Posted by Teri on September 30, 2000 at 01:19:07:

In Reply to: Re: Questions - hope this helps a bit! posted by sarah on September 29, 2000 at 00:18:59:

: : Halo, new to this board. Our daughter 9 has Epilepsy, generlized szs.I have asked the neuro if more tests should be done, and her response was no.I feel there should be, it feels like there is more going on and I just cant pin point what exactly it is.There is some devolpmental delay as well. Has anyone else had tests done and if so which should we ask to have done?It is hard to accept that she has Epilepsy and needs medication and to just leave it at that.I guess I am looking for more answers that make sense maybe?
: : Brits head drops alot at school and shes failing, having a hard time with school and all around frustrated.Her medications either keep her up all night to wonder around the house, or they canknock her out and its hard waking her up.Her behavior can be a bear at times.Anyone else going through this?
: : Thanx Rango :)

: Hi Rango

: I have a child epilepsy and autism. I strongly suggest you look around for a paediatrician who you have trust in, contact the school counsellor and local health services - get your daughter tested. Join a epilepsy association, look around the different epilepsy sites regarding childhood epilepsy. As for medication if the medications are mucking her around (she's only nine) get them changed - my son was on tegeratol but kept getting breakthrough seizures and made him very sleepy - he is now on different meds. and is so much better. If your not happy with what you hear get a second opinion no one knows your child better than you. I wish you all the luck in the future. Sarah

I agree with you, Sarah. A parent knows their child better than any doctor. If this helps, I started thinking of doctors more as consultants. Weighing their advise carefully and exploring all my alternatives. I know many parents who want their doctor to solve all their child's problems; just make them go away but, they never seem to be satisfied. And often disillusioned. My child has an abnormal EEG. She's autistic and has seizures. We've opted not to put her on anti-convulsants and searched for her seizure threshold instead. We found that she's hypoglycemic and have her on the appropriate diet and to date is seizure free. Will this always be the case? I don't know. But what I do know is based on my knowledge of my child and not statisitical data from 3500 case studies. This combination, the personal knowledge of the parent coupled with the broader base knowledge of a doctor can work to the benefit of the child. The first test my daughter had was a CAT scan and was a total waste of money. The MRI and the EEG have been the most helpful. Blood test have been invaluable, too. Something else I do is to focus on what my daughter has accomplished. Because her difficulties are obvious it is often easy to overlook what she has done, what she is doing. My child is fourteen and I've learned to find joy in being her mother. Good luck to you and yours.

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