hi, my name is danni, i am a mum to a 2yr old who is being diagnosed with epilepsy currently. The doctors are not saying much but keep mentioning epilepsy. I have worked with people whom have epilepsy and believe my son has it. The consultant is unsure as he is having mixed seizures, night terrors and sleepwalks. We are currently waiting for an eeg appointment and he is talking about whether melatonin will help him sleep if prescribed. Weare in the uk and any help or advice would be appreciated.
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Hi dannimep, welcome to CWE!
Sorry to hear that you and your family are struggling with this right now. I hope the EEG sheds some light, and that you can get more information about what's going on soon.
In the meantime, I would be wary of having your son try melatonin. It's helpful for some people with epilepsy, but for those who have primarily nocturnal seizures, melatonin can trigger them or make them worse. So if your son IS having seizures the melatonin could be problematic.
You might want to check out the following threads:
http://www.coping-with-epilepsy.com/forums/f22/understanding-melatonin-people-taking-too-much-14491/
http://www.coping-with-epilepsy.com/forums/f23/melatonin-cautionary-tale-24793/
http://www.coping-with-epilepsy.com/forums/f23/melatonin-experience-14969/
Sorry to hear that you and your family are struggling with this right now. I hope the EEG sheds some light, and that you can get more information about what's going on soon.
In the meantime, I would be wary of having your son try melatonin. It's helpful for some people with epilepsy, but for those who have primarily nocturnal seizures, melatonin can trigger them or make them worse. So if your son IS having seizures the melatonin could be problematic.
You might want to check out the following threads:
http://www.coping-with-epilepsy.com/forums/f22/understanding-melatonin-people-taking-too-much-14491/
http://www.coping-with-epilepsy.com/forums/f23/melatonin-cautionary-tale-24793/
http://www.coping-with-epilepsy.com/forums/f23/melatonin-experience-14969/
onder:Hi dannimep,
Welcome to the cwe. I've had epilepsy since I was 10 yrs. old (53 now). My advice to you if to take your son to see an Epileptologist which is a Dr. who specializes in epilepsy. I saw many different neuros over the yrs. but I found an Epileptologist was the biggest help because the Dr. could pinpoint the exact cause of my seizures and also keep me on the least amount of seizure meds.
If you notice that your son is having seizures at night they may be myoclonic seizures. These seizures happen when a person goes to bed or when the first wake up in the morning. I had them until I went on vimpat and that stopped this type of seizure. Also consider asking the Dr. to do a sleep study along with an e.e.g. at the same time on your son, this is what my Dr. did and she found I was having seizures in my sleep 1-2 hours before I would wake up everyday. This could be happening with your son or he may have a sleep disorder that is triggering some of the seizures. You may want to try him on vitamin B12 that has reduced my seizures a lot. I wish you and your family only the best and May God Bless All of You!
Sue
Welcome to the cwe. I've had epilepsy since I was 10 yrs. old (53 now). My advice to you if to take your son to see an Epileptologist which is a Dr. who specializes in epilepsy. I saw many different neuros over the yrs. but I found an Epileptologist was the biggest help because the Dr. could pinpoint the exact cause of my seizures and also keep me on the least amount of seizure meds.
If you notice that your son is having seizures at night they may be myoclonic seizures. These seizures happen when a person goes to bed or when the first wake up in the morning. I had them until I went on vimpat and that stopped this type of seizure. Also consider asking the Dr. to do a sleep study along with an e.e.g. at the same time on your son, this is what my Dr. did and she found I was having seizures in my sleep 1-2 hours before I would wake up everyday. This could be happening with your son or he may have a sleep disorder that is triggering some of the seizures. You may want to try him on vitamin B12 that has reduced my seizures a lot. I wish you and your family only the best and May God Bless All of You!
Sue
Thanks all
Hey thanks for all the advice,
My son is having mixed seizures all over the place at the mo, morning, noon and night. Seem to be mostly absences, but also nocturnal seizures, jerks and a few partials. only one full blown one last year when he was really ill so hopefully wont get another.The melatonin was suggested as he was only sleeping about 3 hours a night. At the moment he is sleeping longer but seems to be having more distubed sleep again, sleepwalking and night terrors. This weekend has been particularly bad and his seizures do seem to cluster every two or so weeks. I will wait for the eeg but otherwise may even think about going private if the frequency gets too much as seem to be altering his behaviour and mood.Just wanted to say this is the most welcoming forum ive been on and will keep you all updated. x
Hey thanks for all the advice,
My son is having mixed seizures all over the place at the mo, morning, noon and night. Seem to be mostly absences, but also nocturnal seizures, jerks and a few partials. only one full blown one last year when he was really ill so hopefully wont get another.The melatonin was suggested as he was only sleeping about 3 hours a night. At the moment he is sleeping longer but seems to be having more distubed sleep again, sleepwalking and night terrors. This weekend has been particularly bad and his seizures do seem to cluster every two or so weeks. I will wait for the eeg but otherwise may even think about going private if the frequency gets too much as seem to be altering his behaviour and mood.Just wanted to say this is the most welcoming forum ive been on and will keep you all updated. x
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One supplement that can potentially help with sleep is magnesium (it can also help with jerks). You might check with your doctor to see if there is a form that would be appropriate for your son to try.