@A MyEpilepsyTeam Member Contact the Epilepsy Foundation and explain so that you can be given an advocate to interact with the doctors to get them to do their jobs for your child

How to Contact the 24/7 Helpline
The Epilepsy & Seizures 24/7 Helpline has trained information specialists standing by to answer your questions about epilepsy and seizures and provide you with help, hope, support, guidance, and access to national and local resources.

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You have it tough enough because you have an 8 year-old having to deal with these seizures. Get the help to get the doctors to do their jobs and having the advocate will also get your questions answered.

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I’m so sorry. I understand what your going through.
The confusion part is very hard. That’s what I struggle with a lot. I support you. I also am going through a very similar process. Getting answers and support seems to be an ongoing process. I wish you the best of luck.

I would like to know the same thing. My daughter has a rare condition of epilepsy, she is 8 yrs old and i finally snapped today via e-mail to head of pediatric neurology. I have HAD IT!!!

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@A MyEpilepsyTeam Member Unfortunately, what that neurologist is the mindset of all except for the exceptional ones --and those can only be that way because they are retired--because the target for he neurologist with a patient with epilepsy is to get that patient to a long-term seizure free state or as close as medically possible. They are focused strictly on that, and I honestly do not know if they know any of the side effects of any of the medications except for those that are extremely dangerous. And in some cases, (as was the case with a friend of mind that I find out this extreme side effect of the medication that he was taking and thus he was suffering this side effect. However, because the rare and extremely rare side effects are only known to drugs.com and other companies whose job is to find the facts on every medications, a doctor is not going to listen to a patient say so. I sent it to him and had him print it out. And because this was a side effect that was proven by research to be potentially deadly to the extremely rare cases like him, the neurologist changed his medication.

Otherwise, it is all about the goal of getting the patient to a long-term seizure free state or as close as possible. Even the good ones will brush off the side effects that are not extremely dangerous because the goal is the focus o the prize. Thus unless, you know of one of these retired great doctors who also is known to your neurologist, it is unlikely that you are going to get the neurologist to respond.

Depending upon the side effect level, reaching out to the Epilepsy Society might get you an advocate to nudge the neurologist to change the prescription. Though, the neurologist might do so only as is getting rid of you as a patient.

However, it cannot hurt to call to the Epilepsy Society and speak to someone there about it, and see what the expert tells you.
You can call our helpline on (Phone number can only be seen by the question and answer creators).
Our Helpline is open five days a week, Monday to Friday 9am to 4pm, (Wednesday 9am to 7.30pm).

You can also reach us by email
(Email address can only be seen by the question and answer creators)

https://epilepsysociety.org.uk/#:~:text=We%20ar....

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