Advice for Insomnia?

[SarahJane]

Is anyone else dealing with a child that's up all night & sleeps all day? We've been in this cycle for a few weeks now, and it's taking it's toll...on me. At least I got him to stop running in to wake his dad to tell him miscellaneous facts in the middle of the night. That made for a grumpy guy going to work all day. When this happened back in the fall, Dr K explained that it was anxiety in PANDAS kids vs. a day/night confusion. I had been using Benadryl, but that has no effect right now. Calm's Forte did nothing when I tried it the other night. I am intimidated by melatonin. I wanna let him sleep since he very likely needs it. I'd just like to join the masses of people who get to function on a "normal" schedule. I homeschool, so it's not doing anything to that...well, I've not been able to do much of that during this flare. (I've held some stealth lessons because I'm getting homeschool refusal...GRRRRR.) We are 4 months post-IVIg. This stuff got started just after I sent a pretty positive 3-month update to our PANDAS doc. We've been in contact with him & actually found high IgG for myco p (677!) and switched to Biaxin to see if that makes a difference (may add a steroid burst next week & a possible IVIg booster is in our future). We've mostly lost all the gains from IVIg & are back to not being able to leave the house & homeschool issues...going on 3+ weeks now. Tho' thankfully, the rages haven't returned...have seen a few but not as intense...and a few tantrums/rantrums.

 

If you have any advice (other than "just wake him up" because I've thought of that--Duh!), please let me know. I am torn between letting PANDAS rule our lives/schedules and salivating over having a normal life/schedule. I know I should accept this new "normal" but just can't. Part of me thinks I should just let this symptom cluster run its course & do the treatment & go from there. But that's the awake me. The me that is dog-tired at 4:30am when my son shows no signs of fatigue & is running around, she's not so understanding nor accomodating.

 

Thanks! (Oh...and Go Cats!)

[butterflymom]

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Edited October 5, 2015 by tampicc

[SarahJane]

No real results from Biaxin yet. Maybe a bit more compliance on the first request when we ask him to do something. He swims in his baths (splash obsession) so I don't think I could really do epsom salts. Maybe I need to just do more melatonin research. Am new to homeopathy & like I said, intimidated. Thanks!

[lyme_mom]

Is anyone else dealing with a child that's up all night & sleeps all day? We've been in this cycle for a few weeks now, and it's taking it's toll...on me. At least I got him to stop running in to wake his dad to tell him miscellaneous facts in the middle of the night. That made for a grumpy guy going to work all day. When this happened back in the fall, Dr K explained that it was anxiety in PANDAS kids vs. a day/night confusion. I had been using Benadryl, but that has no effect right now. Calm's Forte did nothing when I tried it the other night. I am intimidated by melatonin. I wanna let him sleep since he very likely needs it. I'd just like to join the masses of people who get to function on a "normal" schedule. I homeschool, so it's not doing anything to that...well, I've not been able to do much of that during this flare. (I've held some stealth lessons because I'm getting homeschool refusal...GRRRRR.) We are 4 months post-IVIg. This stuff got started just after I sent a pretty positive 3-month update to our PANDAS doc. We've been in contact with him & actually found high IgG for myco p (677!) and switched to Biaxin to see if that makes a difference (may add a steroid burst next week & a possible IVIg booster is in our future). We've mostly lost all the gains from IVIg & are back to not being able to leave the house & homeschool issues...going on 3+ weeks now. Tho' thankfully, the rages haven't returned...have seen a few but not as intense...and a few tantrums/rantrums.

 

If you have any advice (other than "just wake him up" because I've thought of that--Duh!), please let me know. I am torn between letting PANDAS rule our lives/schedules and salivating over having a normal life/schedule. I know I should accept this new "normal" but just can't. Part of me thinks I should just let this symptom cluster run its course & do the treatment & go from there. But that's the awake me. The me that is dog-tired at 4:30am when my son shows no signs of fatigue & is running around, she's not so understanding nor accomodating.

 

Thanks! (Oh...and Go Cats!)

The worsening could be a herx. I would avoid steroids because of the mycoplasma and possibly other infections. I'd see a Lyme literate doctor who understands mycoplasma and other infections to be sure you are not missing something.

Edited April 2, 2011 by lyme mom

[butterflymom]

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Edited October 5, 2015 by tampicc

[SarahJane]

I just assumed he couldn't get it in his eyes, ears, mouth. I'll read up on melatonin AND epsom salts. I actually have put 3M hooks up and bought an extra clear shower curtain liner that's high enough to keep the water in the bath tub (Cut off about 1.5-2 feet or so & stuck it up. That was my solution to "griping" about the mess he made with every bath. Now I don't gripe as much...except when water gets on the ceiling. Seriously. I will be glad to see this spash obsession fall by the wayside. And for a while, he was doing the tidal wave trick he learned from a Calvin & Hobbes book...I halted that real quick!

[philamom]

Sarah Jane-

For my daughter I use Natrol Melatonin 1mg Liquid, so I can easily adjust the dosage up or down. I mix it with juice. It was recommended by my dd's neurologist. I purchased it at Rite-Aid.

For myself, I use Source Naturals orange flavored sublingual 1mg tablets.

I also have Amantilla Relax-Sleep (by Nutramedix), but have not used it. It's a herbal supplement.

 

Someone once mentioned on this forum an epsom salt (homemade) cream that you could rub into the skin, but I forget the ingredients. anyone??

[JJMom39]

L-theanine is a supplement that can be used for sleep problems and for anxiety. It is an amino acid supplement. I use it myself and have liked the results. I do not know what the dosing would be for a child though. According to my acupuncturist it is important to use a brand that incorporates the Suntheanine brand of l-theanine. (I don't remember why though--which is true of most things these days!) I have always used the Enzymatic Therapy brand but there are others that have the Suntheanine form of l-theanine.

Edited March 31, 2011 by JJMom

[Kiera]

I started using melatonin recently for my ds 8, and was amazed that it worked like a charm even at a very low dose! I use the drops, 1 drop = 100mcg, 3 to 4 drops an hour before bed does it. Even if you're weary of it, you could try it just for a short period of time to readjust his schedule and then stop?

[butterflymom]

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Edited October 5, 2015 by tampicc

[butterflymom]

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Edited October 5, 2015 by tampicc

[SSS]

I am so sorry this is happening :-(

 

I have done epsom salt baths with dd for 2 years (although currently she is not into baths, nor really showers, ugh)

Anyway, IMO, they are very harmless, and help a lot.

Bath should be as warm as tolerated, at least up to belly button, start with one cup (I moved up to two cups) when you put the salts in, swish them around with your hands, they will dissolve. They never made my dd un-constipated/affected her bowels. But sure helped calm her down, and they have mild detox capability.

I currently have Kirkman Magnesium sulfate cream (because she won't do baths anymore) and after school (our 'hard' time) I rub it on her back, and give her a foot massgage with it.

I also went to melatonin- because the poor thing would suffer with intrusive thoughts while trying to fall asleep- I too was very nervous about it- not anymore. It really is not a drug.

I use the Kirkman Melatonin chewable tablets 1 mg. Nice minty flavor, small. About 15 minutes before bedtime.

Really helps her- she sleeps through the night, and wakes up okay.

If it were me, and I were you, I would try the melatonin. It helps regulate the sleep cycle.

My .02 cents.

Hang in there!

[Wilma Jenks]

FOR SURE TRY THE MELATONIN. Use to work her but now that OCD is out the roof, it stopped. Inositol helped my girl get to sleep although makes her mean during the day. Magnesium helped but made her confused during day. (My child is a tough case though) Right now she is on low dose of seroquel. It helps with sleep but she still tosses and turns. If I go higher her brain races more and she gets mean mean mean. I have not found the magic bullet yet. Night time is the worse these days. My body shakes just thinking about it. Good luck. and hang in there.

[SarahJane]

Thank you all for the advice! I'm not going to be able to do anything until Mon because I'm going out of town this weekend...alone. Some ME time with my sisters. Will have to force myself not to talk all about PANDAS and all the various topics that I've educated myself about in recent months (CFS, vaccines, immune system, myco p, Lyme, autism, and more). If there was a big PANDAS Parents party, I could add a lot to the conversations...just sayin'.

 

I'll probably go to Whole Foods or one of our local stores to get melatonin. I think I have epsom salts. I think that cream is the same stuff others have said is good when kids go swimming to combat the chlorine. I am just tired of being tired. And the thing is, usually if he does go to sleep early right now (4am is early), I can't sleep...so I'm still up until 6am or so. Will try melatonin for myself. I would like to consult with my new ND before trying it tho'.

 

And Lyme Mom...what is a herd? We did steroids in the fall to try to get symptomatic relief before IVIg. We're supposed to start steroids thru PANDAS doc on Tuesday if the Biaxin doesn't help. I do need to let him know about my hubby's positive IgG too (IgM & IgG were negative on his test last month...now IgG is positive but dr is treating it as past infection). I'll start searching for a LLMD too. Nothing local tho'...of course. Will at least check with my ped's office tomorrow to see if he has a source. I couldn't find anything about steroids & myco p (tho' I did find stuff about not doing it for Lyme). Ah geez. So now it's good my son's up all night...I have much to Google.

 

THANKS again everyone!

[GraceUnderPressure]

I'm pretty sure "herd" was a typo for "herx".

 

What are your concerns about melatonin? Recent research has shown that previous concerns by doctors about how supplementing melatonin might impact negatively on the endocrine system were unfounded if that helps any.