Does anyone have trouble with getting medical professionals to take you seriously when you report side effects of AEDs?

My son is suffering side effects from Keppra (aggression, anger, unable to sleep, emotional all the time, depressed). They've prescribed Melatonin to help him sleep and this does take a slight edge off the other side effects but not completely. I've asked for him to be taken off Keppra but have to wait for his neurologist to review his recent EEG results before a decision is made. I've reported that he said he wishes he was dead and their response is he needs to see a child psychologist. I feel like I'm going mad along with my son. If parents report side effects why can't the drug be changed as there are lots of other medications to choose from.

Feeling hopeless at the moment

4 Replies

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  • What a worry and how awful to be going through this. How helpful is your Gp. I think he should be able to support you, make sure he has written in his notes how your son feels

    You could also ask the consultants secretary for an early appointment, explaining the reasons.

    I believe it is your right to ask for a second option but you will have to check it out with your Gp

    Good luck.

  • Sorry to hear the struggles your son is having... Yes, it could be Keppra medication changing his behavioral patterns. You have every right to ask for a second opinion... Don't just listen to them advising he must see a child psychologist. Request an earlier appointment with the Neurologist or find another doctor that may show some interest and care. There are many different medications... I currently take Phenytoin and Carbamazapine, which I have been on for years and won't change to anything else. Please keep us posted.

  • ............and how! I was referred to psychiatrists, psychologists, Alzheimer and dementia specialists and a host of different doctors at a neurological hospital over a 4 year period. I even asked them if it was epilepsy and the top man said "No chance". Four weeks later I had a tonic clonic seizure in the middle of the night. Four different doctors at the GP practice

    gave differing diagnoses from Psychogenic syncope to TIA and others in between. Odd thing to say but the eventual seizure came as a relief.

  • That's awful. It should always be the patient's (or in the case of minors their guardians') final decision when it comes to medical treatment. The doctors are there to guide and advise, and if you really think this is something that needs to be addressed immediately, they should help you to do that in the safest way possible.

    It seems ridiculous that they're waiting for the results of the EEG as clearly you will still want him off the medication... Maybe they're trying to get more information about the specific diagnosis, so they know what to medication to try next? Only certain AEDs (anti-epileptic drugs) will be likely to work depending on the type of epilepsy he has.

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