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So my daughters neuro put her on melatonin I think last month at 5mgs. It worked for a couple of days and then it hasn’t really worked. They put her on it for her to get a restful sleep, but her sleep hasn’t gotten any better really. She has a Fitbit and I put it as sensitive to see what I can get more of and it really tells me her sleep. I need to get ahold of her neurologist office and see what they say and go from there also. She don’t see them till April 27th I think it is and I’m thinking of seeing also if they are going to lower her onfi again, but not sure if they will. She also is on her iron 4xs a day and is still pretty pale looking so I’m not sure on that. Should I push for it or no? She hasn’t had any seizures since like 2011-2012 but small things here and there and she still has a very messy eeg. I’m so unsure but I’m thinking they will do what they want. Her eegs have always been active. Her diagnosis is complex partial epilepsy into generalized seizures and continuous spike wave during slow wave sleep. The only med that she is on is the onfi he does not want her on any meds just one as of right now. Nicole

Comments

our daughter’s last eeg

Submitted by Amy Jo on Wed, 2018-03-14 - 00:26

our daughter’s last eeg showed disrupted sleep cycles. she would wake up more often and more fully than usual. melatonin only helped her get to sleep faster, but getting to sleep was never a problem. some people have mentioned using extended release melatonin. one supplement I know others with seizures sometimes try and my child with migraines uses is magnesium. I also use it right before sleep as it has a noticeable effect. it’s not usually a problem as most people don’t get too much and it doesn’t build up in the body. that isn’t an option with our sleep disrupted child as she doesn’t take pills, melatonin was quick dissolve tablet. if there’s a liquid magnesium that is easy to take, I’d love to hear about it. so we eventually did retrain her to go back to sleep (with help of her CBT psychologist) without waking me but she still wakes up a lot when I’ve checked. when given a brief fast wean for the last eeg, our child had continuous generalized activity start and get worse but they didn’t catch partials they were really looking for. sounded like the disrupted sleep cycles was not an unusual finding. epi didn’t care until I pointed out that I was losing functionality so it REALLY did matter. they weren’t really set up to help much with issues associated with epilepsy, grrr.

Amy Jo, has your daughter had

Submitted by nicki604 on Wed, 2018-03-14 - 21:17

Amy Jo, has your daughter had a sleep study done? I hear what your saying...yea my daughter goes to sleep great but her neurologist put her on it to make her sleep more restful witch hasn’t really helped or made a difference. Someone said to try magnesium, but she’s such a picky one with meds and finding liquid with it would be a joy if you know what I mean. She is not my med taker and she has been doing okay with the meds she takes right now but any changes is always fun. I need to get ahold of her neurologist office tomorrow and see what they say and all...we see them the end of April and I’m hoping they will add one or two on just to check on things but I’m sure they will not. Thanks

Yes, we did a sleep study and

Submitted by Amy Jo on Thu, 2018-03-15 - 01:31

Yes, we did a sleep study and while there’s some mild central apnea, nothing that needs treatment. With our sleep study group there’s two major focuses - pulmonology or neurology. Our concern was not regarding obstructive sleep apnea so we came into it from the neuro concerns. Our epileptologist reviewed the EEG and said the disrupted sleep cycles were still there. A sleep study is something to try if you haven’t, apnea is an issue for lots of patients, even more so in drug resistant epilepsy (partial seizures have never completely been controlled for our child although they seem to have slowed, epi thinks she has a time limited form of epilepsy so we should have a better idea in a few years).We got the best support with the psychologist we saw for CBT even though the referral for that doc was for another reason. Another suggestion from the sleep study people is trying a weighted blanket. There are some studies which show it can help (our pediatrician thought weighted blankets were an unsupported fad). For my non pill taker, I will grind pills where absolutely required and mix powder into frosting put on a mini cupcake. But since that kid doesn’t like certain texture differences, started out by getting that child to allow for sprinkles on frosting and then added the pill dust isn’t as odd a jump. If your child has issues with certain textures in food, sprinkles might not help and they probably will reject the frosting with a pill (or pudding or whatever medium you try). Not all pills should be ground up. And it’s like climbing a mountain so it needs to be beyond important to be worth how hard that is. The psychologist did help with trying new experiences but it was a slight dent in a huge problem we are always working on (well, whenever I’m not burnt out).Another thing that helped us was to get some pets. Our cats were conditioned to sleep on our child’s bed at bedtime. Our child is really into cats, very calm so it works out. We also talked about how cats are nocturnal so they go on patrol later on. When our earlier (very old) cats were around our older kids as toddlers, it seemed to reassure the kids that the cats would eat any spiders they came across.

Yes, we did a sleep study and while there’s some mild central apnea, nothing that needs treatment. With our sleep study group there’s two major focuses -  pulmonology or neurology. Our concern was not regarding obstructive sleep apnea so we came into it from the neuro concerns. Our epileptologist reviewed the EEG and said the disrupted sleep cycles were still there. A sleep study is  something to try if you haven’t, apnea is an issue for lots of patients, even more so in drug resistant epilepsy (partial seizures have never completely been controlled for our child although they seem to have slowed, epi thinks she has a time limited form of epilepsy so we should have a better idea in a few years).We got the best support with the psychologist we saw for CBT even though the referral for that doc was for another reason. Another suggestion from the sleep study people is trying a weighted blanket. There are some studies which show it can help (our pediatrician thought weighted blankets were an unsupported fad). For my non pill taker, I will grind pills where absolutely required and mix powder into frosting put on a mini cupcake. But since that kid doesn’t like certain texture differences, started out by getting that child to allow for sprinkles on frosting and then added the pill dust isn’t as odd a jump. If your child has issues with certain textures in food, sprinkles might not help and they probably will reject the frosting with a pill (or pudding or whatever medium you try). Not all pills should be ground up. And it’s like climbing a mountain so it needs to be beyond important to be worth how hard that is. The psychologist did help with trying new experiences but it was a slight dent in a huge problem we are always working on (well, whenever I’m not burnt out).Another thing that helped us was to get some pets. Our cats were conditioned to sleep on our child’s bed at bedtime. Our child is really into cats, very calm so it works out. We also talked about how cats are nocturnal so they go on patrol later on. When our earlier (very old) cats were around our older kids as toddlers, it seemed to reassure the kids that the cats would eat any spiders they came across.

Yes, we did a sleep study and while there’s some mild central apnea, nothing that needs treatment. With our sleep study group there’s two major focuses - pulmonology or neurology. Our concern was not regarding obstructive sleep apnea so we came into it from the neuro concerns. Our epileptologist reviewed the EEG and said the disrupted sleep cycles were still there. A sleep study is something to try if you haven’t, apnea is an issue for lots of patients, even more so in drug resistant epilepsy (partial seizures have never completely been controlled for our child although they seem to have slowed, epi thinks she has a time limited form of epilepsy so we should have a better idea in a few years).We got the best support with the psychologist we saw for CBT even though the referral for that doc was for another reason. Another suggestion from the sleep study people is trying a weighted blanket. There are some studies which show it can help (our pediatrician thought weighted blankets were an unsupported fad). For my non pill taker, I will grind pills where absolutely required and mix powder into frosting put on a mini cupcake. But since that kid doesn’t like certain texture differences, started out by getting that child to allow for sprinkles on frosting and then added the pill dust isn’t as odd a jump. If your child has issues with certain textures in food, sprinkles might not help and they probably will reject the frosting with a pill (or pudding or whatever medium you try). Not all pills should be ground up. And it’s like climbing a mountain so it needs to be beyond important to be worth how hard that is. The psychologist did help with trying new experiences but it was a slight dent in a huge problem we are always working on (well, whenever I’m not burnt out).Another thing that helped us was to get some pets. Our cats were conditioned to sleep on our child’s bed at bedtime. Our child is really into cats, very calm so it works out. We also talked about how cats are nocturnal so they go on patrol later on. When our earlier (very old) cats were around our older kids as toddlers, it seemed to reassure the kids that the cats would eat any spiders they came across.