Sleep issues -- what do you use?

[T_Mom]

My youngest is still in the midst of exacerbation (it has been a terrible year, really.) Home since 2/18.

When she rages it is destructive. (Rages ARE far fewer then they were in Jan--Feb...thankfully.)

 

Currently on Augmentin 2000 and 250 Azithro.

 

She has not been sleeping for the past week--until around 1 or 2am.

Suggestions? We tried Melatonin until I read it said not to use for those w/ autoimmune conditions!

Other ideas? thanks.

 

 

[Guest]

I use melatonin and have for some years - never had any issues and I have 2 auto-immune disorders. But perhaps safe to talk to doctor. My cousin with autism takes it as well without any problems. The key to melatonin is to take is 2 hrs before the desired bedtime and take it at the SAME TIME every night. It is not a sleeping pill but rather it helps regulate the internal clocks and helps the body know when it's time to sleep and then wake.

 

I don't know what to suggest b/c I am an adult taking a lot of sleeping pills and I don't know what is safe for children. Though in my experience I have found benzodiazepines to have the least side effects (next day sedation) and they don't "knock me out" but rather make me calm.

[4Nikki]

Same here:

 

DD just finished a her perscription of Augmentin 2 days ago and has been raging the whole time. Although I feel like the ibuprohin has helped to curb in the intensity. Seems like she is able to have more self control with the ibuprofin than with out it. She will stay in her bed to rage rather than having the need to run throw and breaking things. Benadryl 50mg only for bedtime has been working for us and she sleeps through the night. I found that if I give it to her 25 mg durning the day she can't sleep at night. DD is still having rages even through we have finish the Augmentin. Dr. B said we should bring her to childrens hospital where they can figure out what meds will help. I was thinking of using something else but came across this:

 

http://curezone.com/forums/am.asp?i=1440542

 

"Can antihistamines like Sudafed and Benadryl make auto-immune conditions worse?"

 

"Sudafed (pseudoephedrine) yes, Benadryl (diphenhydramine) no. The difference is that Sudafed is a stimulant, and Benadryl is a sedative. Stimulants weaken adrenal function, which is a big part of autoimmunity."

 

[nicklemama]

I've been giving DS melatonin since 2009, when he first got sick at age 5. His ped, 3 neurologists, psychiatrist, psychologist and neuropsychologist recommended it. We started a half a milligram. He stayed at this level for 3 yrs. I upped it last year to 1 mg since it was somewhat less effective and he'd grown so much. Late last yr, he caught pneumonia and had an exacerbation. I started giving 2mg for several months until things were better. He's back to one milligram. Also, a yr ago, we started seeing a biomedical doc and he recommended adding 1000mg of taurine at bedtime. Works very well. I give it a half hour before bed. If I give it too early, it's not effective at all. DS will outlast its effects.

 

Recommend checking ferritin levels too. DS's have been low since it was checked in 2010. I mean really low. Since we started supplementing with Ferrochel, an iron supplement, DS has been sleeping a lot better. Low ferritin levels is associated with restless leg syndrome. For unknown reasons, many PANS kids are low in ferritin. Maybe due to coinfections like babesia.

[MomWithOCDSon]

Melatonin isn't good for autoimmune conditions? Can you post a link on that? I honestly haven't heard that before, and DS has been taking melatonin fairly regularly for the last year or so. It works like a charm for him, and we don't see any negative impacts.

[dcmom]

T- we use melatonin also, for both girls, on and off (as needed) for about 3 years. Both of our pandas docs okayed it.

[queenmother]

Much as I do not want to confuse you, melatonin is a methyl donor and, if your child has a COMT gene mutation, methyl donors like melatonin will actually agitate your daughter. I learned this the hard way; my daughter has the COMT mutation. Safe for all genetics seems to be magnesium citrate and GABA. I compound a capsule of about 150 mg mag citrate with 200 mg of GABA (make sure it is just GABA) and give an hour or so before bedtime. It helps tremendously. Much higher doses can be tolerated but I find this works nicely for my daughter and she is 16. Bedtime has always been difficult but this truly calms her and things are much easier. Infections elevate glutamates and the GABA helps to balance it. Occasionally, if I see a reeeealllly bad night coming down, I make her a sup of chamomile tea aand put a drop of Valerian Root extract in it...a drop or 2, NOT a dropper. Since I have been doing these things, she gets to bed with much less effort and sleeps through the night for the first time in her life.

QueenMother

[SSS]

Sorry, hate to add confusion, but my dd had bad reactions to Gaba, and believe me I tried it a few times, since it is the calming natural pill.

We use melatonin here, too. I used to have prescriptions for sleep pills (Ambien) and never thought I'd be able to give it up- and lived with chronic sleep issues.

Gave it up, take 2 gram melatonin- no sleep issues! For months now.

My dd also uses it, falls right asleep, and all through the night.

We take it within 20 minutes of lights out for bed. Little chewable tablet.

[LNN]

T - I'm so so sorry. I know you're looking under every rock, every clue. I wish there were some way to help you find the right trail. I remember a few summers ago as we shared stories and how I owed you so much for finding Dr L and helping all of us finally find someone who would help our kids. I feel like it's so unfair that you're still dealing with this.

 

In March, I started this thread about what might be causing my DDs insomnia, http://www.latitudes.org/forums/index.php?showtopic=19878&hl=insomnia- so maybe you'll see something worth investigating. We ended up running a full thyroid panel on DD and it's negative for Hashimotos or other issues. High TSH remains her only issue. I recently found some research that's found an inverse relationship between low zinc = high TSH. So I started zinc supplements with DD and she does seem to be falling asleep just a little sooner in the past week. My DH has been plagued for years with night wakings - something called fragmented sleep. He started taking zinc last week too and the number of times he's waking thru the night is decreasing. I don't have insomnia, but when I slack on my zinc supplement, I don't get the same quality sleep. Some patients with eating disorders have also responded well to zinc supplements. So just one idea to consider...

 

As always, you're in my thoughts.

[philamom]

I recently went back to using Melatonin on myself (2-3 mg two hours b4 bedtime). It doesn't keep me asleep through the night though. I love the brand "Source Naturals" orange flavored sublingual tablets. It doesn't make me feel groggy the next day.

 

Dd is more sensitive though - so not as useful.

Edited May 12, 2013 by philamom

[Guest]

Same here:

 

DD just finished a her perscription of Augmentin 2 days ago and has been raging the whole time. Although I feel like the ibuprohin has helped to curb in the intensity. Seems like she is able to have more self control with the ibuprofin than with out it. She will stay in her bed to rage rather than having the need to run throw and breaking things. Benadryl 50mg only for bedtime has been working for us and she sleeps through the night. I found that if I give it to her 25 mg durning the day she can't sleep at night. DD is still having rages even through we have finish the Augmentin. Dr. B said we should bring her to childrens hospital where they can figure out what meds will help. I was thinking of using something else but came across this:

 

http://curezone.com/forums/am.asp?i=1440542

 

"Can antihistamines like Sudafed and Benadryl make auto-immune conditions worse?"

 

"Sudafed (pseudoephedrine) yes, Benadryl (diphenhydramine) no. The difference is that Sudafed is a stimulant, and Benadryl is a sedative. Stimulants weaken adrenal function, which is a big part of autoimmunity."

It's interesting what you posted about stimulants. I have been put on many stimulants b/c I have such severe daytime sleepiness and fatigue and they all made me WORSE within 30 minutes I would be crashed out so badly - all fatigue and sleepiness 2x's as bad and NO DOCTOR understands this but I think it is key to my condition. Anyways, I'd be interested in hearing more about their effects with auto-immunity.

[sf_mom]

Like others have said, she could be very low on magnesium. You can test for specific deficiency. We use Calm at least 600 m.g prior to bed. If there is still a problem then perhaps give more Calm throughout night that is tolerable (if you get lose stool you've hit your limit).

For those with altered thyroid too high or too low, I highly recommend reading Dr. Brownstein's book on iodine or listen to the following interviews. Dr. Klinghardt believes iodine deficiency goes along with chronic infection just like KPU. Easy way to tell if you are deficient in Iodine is to buy some Lugol's Iodine and place 2" by 2" patch on underside of arm and if patch disappears within 24 hours there is most likely a deficiencies.

Edited May 12, 2013 by SF Mom

[T_Mom]

Wow-- thanks everyone for the great suggestions here--

 

The warning is on the side of the bottle, it is made by Schiff, Melatonin Ultra, "3 mg Melatonin, Theanine, GABA & more"

on the side it reads: Warning: not intended for use by pregnant or lactating women, individuals with autoimmune conditions, depressive disorders..."

 

So, anyway, I have no idea if that means PANS kids or not? I also wonder if it is too strong a dose perhaps??? and 2mg may be better to try?

 

Good pts all re: magnesium, zinc possibilities SFmom and all--THANK YOU.

LLM I will revisit that thread, thank you!

 

Whew, it is a tough time but glad to have this forum to chat with.