We ditched the Rozerem....

[Denae]

All it managed to do was make her irritable and unsteady on her feet.

The info that I read about it says nothing studies in children, that makes me very uncertain about giving it to her since I have no idea what to look out for.

So what is available that safe for children? or at least has been studied and has a list of things to look out for...Even things that are used off label for sleep issues...

I am sending her neuro an email tomorrow night, I realy can't take it anymore. I feel like I am half asleep all day long.. I can't function on just 3 hours of sleep a night. I can't figure how she keeps going like the energizer bunny. I just want to know what our other options are so that when Dr.P gives us options we already know whats up with the different meds...


I am at my wits end, we have done all of the typical bed time routines, and rules... in the total silent dark she plays with her feet, fidigits with the blankets that will last about an hour before the vocalizations start, those can last for hours. story time, quiet activities, nothing with sugar or caffine, bla bla bla... I am lost ...and desperate...

What about something natural? We have done Melatonin off and on for a year (or longer?) Is there something else?

[Love My 7 GEMS]

Can she take Clonodine? (NOT Klonopin!) I don't know if you can mix clonodine with AED's, so I'm not sure if that is a help or not. I just know Aaron was on Clonodine for many years, (starting when he was 3) and it helped him a lot. It finally did lose it's effectiveness a few years ago, and now he's on Ambien, but that's for older kids/adults too.

I know what it's like to not have your child sleep and be up half the night... I hope you can find a solution that works for all of you...

Dori

[langansmom]

(((((hugs)))))

I know the all night party scene well- and it's not the one from my college days. LOL

Langan has never been a good sleeper. Melatonin works to get her to sleep but she still has been up frequently in the night, almost like the melatonin made her few hours of sleep so restful that she didn't need more. Sigh. She is actually finally sleeping a little better on this small dose of topomax- now we only have the wild parties about once a month, although she still wakes off and on in the night.

Could things be coming to a head for Riley as her body adjusts to life without topomax? I know our neuro says it takes a long time for the body/brain to adjust to med changes, and she was on it for a while, so maybe this is her body reacting to the wean. I know that may be no help whatsoever, but at least it would mean that relief is coming once she adjusts??

I know what you mean about meds not tested in kids. None of these AEDs, with the exception of pheno and maybe a few others, are "approved for use in children." Scares the heck out of me but seizures scare me worse. Ugh.

(((hugs))) Hope you guys get some sleep soon!

[Denae]

I hadn't stopped to consider that it even could be from coming off of the Topomax, she was on it for a very long time at a pretty high dose. Thats a good idea and I like it more than this some other "Riley-ism"


I am with you on the AED's and seizures- for sleep- the drug scares me more than not sleeping- the fact that it hasn't been studied in children it what scares me. At least with our AED's we know even though they aren't approved for use in children it is used in children and has been studied in children with a list of possible side effects (even though some are really bad) you KNOW what to watch for!

[lacyndarella]

This may not be much help, but I just bought Jimmie that Johnson's bedtime bath. It didn't make him sleepy, but he certainly seemed much calmer after his bath...so maybe there is something to aroma therapy...and the worse that can happn is it makes everything smell good and not calm her down...try dropping some lavendar and vanilla essential oils in a humidifier in her room.

[mpalmer118]

Sorry I am late chiming in.:)

I have been doing a ton of reading on the effects of Rachel's medication, Sinemet, because we are seeing some yucky side effects that included sleep issues. Lucky for us she seems to have gotten passed that particular side effect, although she is still having mood problems. I thought I would share a little bit about what I found out, keeping in mind that I am by no means a doctor or in the medical field in any way shape or form.

Just about everyone here knows melatonin is something that the brain/body creates naturally that aids sleep. Fewer may know that serotonin (which helps us feel calm/happy) also converts to melatonin. Because one of the nasty side effects that we are seeing with the med Rachel is on is mood related (think Kepp-rage) I set about trying to find ways to naturally increase her serotonin levels and indirectly her melotonin levels.

The easiest safest way to do this that I have found so far is by increasing the body's intake of tryptophan. This is a cut and paste from Wikipedia, but I have verified it through other more reliable sources also.

"Tryptophan, found as a component of dietary protein, is particularly plentiful[6] in chocolate, oats, bananas, dried dates, milk, yogurt, cottage cheese, red meat, eggs, fish, poultry, sesame, chickpeas, sunflower seeds, pumpkin seeds, spirulina and peanuts. It is found in turkey at a level typical of poultry in general.[7]

Tryptophan Content of Various Foods[8] Food Tryptophan (mg per 100 g of food)
Beef 230
Cow's Milk 42
Edam Cheese 325
Eggs 165
Wheat Flour 100
Potato 83
Sausage 93 "

We tried increasing Rachel's intake dramatically, and did notice a difference in both her mood and sleep, but unfortunately most of these foods are high protein which interferes with the med. So I am still digging, but maybe it will help with Riley.

(((((hugs)))))

[mpalmer118]

I just remembered that Riley is gluten free, which will automatically knock some of the food options off. The meats and milk and cheese were the easiest for us to increase anyway.

[Denae]

It is funny you posted this today, I just finished reading “The ADD/ADHD diet”
and it talked about Tryptophan, serotonin and ways to naturally increase it in the body; and what behaviors point to a need for more.

Of course the book wasn’t that great, mostly it touches on lots of different ideas and then directs you to various books. But I did get a little bit of really useful info from it. There was a lot of info about B6 and the issues that can arise from not having enough. When Ri was on B6 there was a noticeable difference, but that alone caused a whole set of problems too.

I have been playing phone tag with Dr.P’s nurse all morning. I really can’t take it anymore, I am desperate for sleep.