Daughter Not Sleeping

[AmbersMommy]

I am at my wits end. My daughter hasn't been able to sleep at night on a regular basis since May. It varys how early she can get to sleep. Some nights it is 3 AM while others she can get to sleep by 9:30 PM which is absolutely a gift. Is there anything I can do to get her to sleep at night? Has anyone had any experience giving their child melatonin. My dd has had hallucinations that are either PANDAS related or Lyme related. I don't know which, and probably never will. I have been afraid to try the melatonin for fear of the hallucinations returning and/or other neurological symptoms becoming exacerbated. Any insights on what works would be greatly appreciated.

[texascatholic]

My DD8 was recently diagnosed with PANDAS. I give her 1.5mg of melatonin every night by breaking a 3 mg. tablet in half. It helps a lot!

All the doctors I've mentioned this to have not shown concern about it. Dr. Rao (an immunologist) says 1-3mg is an acceptable dose.

I would love to hear other's experiences as well!

 

God bless,

Holly

[kmom]

Dr. T. said it was fine to give DD8 and DS5 3mg melatonin nightly and almost every night I do. It they lose sleep, their symptoms worsen so I find regular sleep to be a VERY important thing. I find it best to administer like 30 min b/f bed and then have quiet time watching tv or reading till they fall asleep b/c I've felt a few times we missed the sleep window of opportunity and they stayed up past the effects of melatonin if they were too engaged in something more exciting than just relaxing.

[KeithandElizabeth]

Gosh, this was our life at one point in time as well. My son could not go to sleep and then when he did fall asleep, he would wake up a few hours later with horrible hallucinations. And then he would be up for the day at 4:00 in the morning. I think this is all part of the inflammation. Melatonin did help my son go to sleep, which was very helpful, but did not keep him asleep. So, I would recommend the melatonin for at least part of the problem. Is your daughter currently on antibiotics?

 

Elizabeth

[peglem]

Melatonin has been known to cause nightmares, but its worth a try if sleep is an issue. My 15yo daughter gets 3mg/night, about 1/2 hour b4 bedtime. Also give her 900-1350mg of valerian root. It almost always works. What I usually do is give 1.5mg melatonan and 900mg valerian root 1/2 hour before bedtime. If she's not falling asleep 1/2 hour later, I give another 1.5 melatonin and another 450 valerian. She's had extreme sleep problems since infancy and this is the only thing I've found to work pretty consistently. When I only give melatonin she will wake up almost exactly 4 hours after dosing.

[Kay]

Sleep is always an issue when we are NOT on antibiotics. Not too long ago we tried going off the antibiotics and for the first few days we were good but as the days went on it was clear that sleep was an issue among other things. She would fall asleep later and later each day finally at about 14 days off she was falling asleep at 5am. I watched as we put her back on antibiotics each day get better, it took about a week for her to finally get back to a normal pattern of sleep, I watched it increase a hour or two each day.

Edited September 1, 2010 by Kay

[MomWithOCDSon]

We had huge sleep issues early on in PANDAS, even with antibiotics at hand. So we started using melatonin several months ago, and it worked so well for DS, DH and I have become melatonin users, as well. DS is 135 lbs., and 3 mg. puts him to sleep quickly, and he now sleeps solidly through the night.

[wornoutmom]

I'll add another voice to Melatonin being helpful. Gave 3 mg to PANDAS ds last fall when insomnia was a problem and it did help - no nightmares, just some sleep talking. Just started this week giving non-PANDAS son 1.5 mg after several weeks with difficulty falling asleep and it is working like a charm for him - he is very grateful. As I see it, it is a pretty benign thing to try...

[dcmom]

I also give my two girls melatonin for help in falling asleep. You should start at a low dose, and move up to what works.

 

I give them only .5 mg, once they are ready for bed- then we do some reading, and they are asleep quickly.

[Fixit]

I am at my wits end. My daughter hasn't been able to sleep at night on a regular basis since May. It varys how early she can get to sleep. Some nights it is 3 AM while others she can get to sleep by 9:30 PM which is absolutely a gift. Is there anything I can do to get her to sleep at night? Has anyone had any experience giving their child melatonin. My dd has had hallucinations that are either PANDAS related or Lyme related. I don't know which, and probably never will. I have been afraid to try the melatonin for fear of the hallucinations returning and/or other neurological symptoms becoming exacerbated. Any insights on what works would be greatly appreciated.

 

i tried it myself as being a pandas parent..

 

1mg is enough...when i did more,,,i did crash, but did wake up and had some weird dreams...

at 1..i guess it just takes the edge off..

[mandyknowles]

I am at my wits end. My daughter hasn't been able to sleep at night on a regular basis since May. It varys how early she can get to sleep. Some nights it is 3 AM while others she can get to sleep by 9:30 PM which is absolutely a gift. Is there anything I can do to get her to sleep at night? Has anyone had any experience giving their child melatonin. My dd has had hallucinations that are either PANDAS related or Lyme related. I don't know which, and probably never will. I have been afraid to try the melatonin for fear of the hallucinations returning and/or other neurological symptoms becoming exacerbated. Any insights on what works would be greatly appreciated.

 

 

Can I just say Melatonin? thats all I'm saying

[tpotter]

Melatonin actually made my guys worse...horrible dreams. I found that 5-HTP in large doses (4 pills for my DS17 and 3 for my DS14) before bed + sometimes either a glass of warm milk, or a handful of peanuts (both with tryptophan) worked much better.

[Luna2]

My dd12 has had sleep issues for years.Is unable to go to bed, combative with attempts to get her to bed and sometimes sees monsters. We give her between 2.5-5 mg of meletonin at night. We use the sublingual orange flavored kind from Source Naturals or the mint ones from Trader Joes. When she was younger and we gave her a very small amount of meletonin, Source Naturals had the lowest dose sublingual tabs. We have also found Bedtime Tea by Yogi brand to help (make it with honey). Last, we do magnesium massage with new age type music. We have a regular relaxation spa around here in the evenings. Wish it was for me!