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Old 09-05-2006, 09:39 PM #1
jjbeck jjbeck is offline
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Default Melatonin

Hi guys. Good to be back. Just wondering if any of you have experience giving your child melatonin. Ava is now on lamictal. She has never been good sleeper, but since the lamicatl it has been even worse.
Our neuro's office said we can give melatonin.
I am just wondering how much quality counts? There is a huge price difference in brands. Meloatonin is something I have taken for yers, and the last batch I got, i bought a cheaper brand and had horrible nightmares from it. Not sure if it had anything to do with the brand or not.
Any thoughts?
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Old 09-06-2006, 09:38 AM #2
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I reecently tried giving Melatonin to Riley and is was like a sugar pill to her. Nothing after the first 3 nights. I bought Twinlab brand and another brand that I can't remember but I got it at Whole Foods.

Both of them pretty much were the same. I only bought the TwinLab brand b/c the other one was not working and I thought it may have had something to do with the other one being a little less expensive.

I hope it works for Ava
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Old 09-06-2006, 01:54 PM #3
langansmom langansmom is offline
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We use TwinLab melatonin every night with Langan and it usually works like a charm. They come in 3mg capsules but I usually open them and pour out about 1/3, as we have found that 2mg is the best dose for her.

Langan is also on lamictal and we have really needed the melatonin so we can all get some sleep! I hope it works for you guys!

(((hugs)))
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Wendy, mom to Langan, the love of my life, born 7/19/02. Global delays, intractable seizures, mystery girl. VNS implanted 2/10/06, now on small dose of lamictal and fighting for seizure control, and wife to Jon, the other love of my life!!
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Old 09-06-2006, 07:04 PM #4
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Wendy, I use twin Labs for myself. that is what I ended up giving her last night.
So does her neuro OK using it evernight? Do the effects ever fade for her?
The neuros nurse did not say either way, but they ped cautioned against using everynight.

I do not know if this is a coincidence or not, but today she had the best speech ever! She was stringing more words together and her words were clearer.
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Old 09-06-2006, 08:50 PM #5
langansmom langansmom is offline
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I hope it's not a coincidence! I do see much better things with Langan when she has a good night's sleep so maybe that's what you're seeing!

Our neuro said there was no harm in giving it every night. I was very careful to ask about that on the front end and she was explicit that there is no problem giving it as long as we need it. There are some studies that showed a possible increase in seizures, so that's what she wanted us to watch for. When I got concerned about that, I took Langan off for a few days and seizures got worse so it wasn't a problem for us. There is one study that suggested better seizure control with melatonin- Langan is, unfortunately, also not in that group.

We were told we could use a higher dose if needed but I am trying to stay as low as I can and still get the good sleep. Langan still has a night here and there where she is just totally wired, but I think that's more her brain and less the lamictal on those nights. All in all, I would say the melatonin has been a lifesaver for us. Sleep is still not Langan's strongest point, but it is so much better now with the help.

Hope you have another good night and more great speech tomorrow!

(((hugs)))
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Old 09-06-2006, 08:53 PM #6
RathyKay RathyKay is offline
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Quote:
Originally Posted by jjbeck View Post
I do not know if this is a coincidence or not, but today she had the best speech ever! She was stringing more words together and her words were clearer.
A good night's sleep and improved speech. I don't think it's a coincidence. We've never done melatonin, so I don't have any advice. But, I do think improved sleep will help developmentally. (Hopefully, it will help keep seizures away, too.)
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Old 09-09-2006, 08:22 PM #7
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Howdy all,

Good to see some old friends.

Spencer took Melatonin for about a year and a half at the direction of the Neuro.

Neuro said that many people with Neuro issues have sleep disorders to boot.

Neuro told me to give Spenc 3 - 6 mgs per night.

I gave Spencer a store brand but the ingredients gave him migraines. (Oh, what a surprise there. Like Mother like son.)

I tried the same brand, too, before I knew it was the ingredients that gave him the migraines.

The ingredients actually caused me a breathing problem that was very scary.

Paul from Australia suggested we have the Pharmacy compound the Melatonin for us. It costs $50 a month but it is well worth the investment.

Spencer stopped needing it nightly when we started giving him the Mannatech. We now only give it to him when he acts like a party animal at bed time.

It helped get his sleep cycles into order.

It helped tone down my migraines; especially those that were sleep deprived induced.

Hope it helps.
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Old 09-09-2006, 08:45 PM #8
jjbeck jjbeck is offline
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Well it has been workin great for Ava. I have throught of having a pharmacy compound it. Although the twin labs seem spretty good so far. It is hard to beleive that Ava actually sleeps through the night now.
So now the question is, how long do I give it to her?

Her moods are so much better now too.
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Old 09-09-2006, 10:28 PM #9
Beck Beck is offline
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Glad it works for her.

How long to give it...

That is the trick.

We watched Spencer to see if he was getting sleepy on his own about the time we would normally give it to him.

If he looked drousy, we would wait and see if he needed it.

If he was a party animal, he got one. That is actually still true today. We just don't give it to him more than a couple of times a month.

Our Neuro said that it is always appropriate to do a trial off a med from time to time for people that are on long term meds.

That is, of course, with a caviat. If the person is on a med that staves off a life threatening situation, don't do the trial. Diabetics should NEVER do a trial off their Insulan.

Melatonin is an entirely different story. If you think she is getting her sleep cycles in sync, hold off and see what happens. If she doesn't go to sleep on her own, you can always make a different decision at 10 pm.

That is also true if she wakes in the night. If I wake before 4 am, I will take another dose. My Doc told me I could take a max of 15 mgs per night. That sounded like an awful lot so I don't do that. I take 5 mgs. If I wake in the night, I take another. That usually only happens once a month during my cycle.

Hope that helps. Others can tell you what they do or did.
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