Insomnia Problem, ideas for help

[dut]

Hello.

 

Our 12 year old dd was a classic PANDAS/PANS child with on/off flares from 5 until about a year ago. We have had NO PANDAS flares in the last 13 months +.

 

We believe that as she hit puberty her system matured/calmed down who knows but we haven't even had an inkling of anything for that time and previously we couldn't go a few months at best without a flare. Almost anything that provoked an immune response, could provoke a flare. So we are fairly confident that PANDAS as we used to know it for her, hasn't been around.

 

But..... instead she has been battling insomnia. Sleep was always an issue for her during flares but it looked very different form what we are seeing now.

 

She is experiencing sleep onset issues. At times severe. Sleep onset no earlier than 4-7am in 5 of the last 6 nights. Then waking 2-4 hours after falling asleep. The one night she got to sleep at an ok time she was up 4 hours later, so waking and not being able to go back to sleep are also an issue.

 

This is the worst patch so far but this has been ongoing for a few months.

 

We have tried

 

Melatonin (used to work)

Valerian

Passiflora

GABA

Chamomile

Hot milk.

No electronics

Lower lights

Quiet bedroom

Seriphos (to quiet adrenals)

Benadryl .. works most times but not touching the sides this week

Trazadone

Sound machine

 

We were told the trazadone...taken as needed for sedation not depression/anxiety, would knock an elephant down in an hour. It does work but is taking 2-3 hours and she is so fried/spaced the next day, she couldn't make it into school.

 

She doesn't appear to be having any anxiety and she, and we, sorta know the signs for that by now She's self aware and able to voice feelings/issues - thanks PANDAS and can't think of anything stressing her, she says, unless it is uber subconscious.

 

I am reading about a disorder different to insomnia called delayed sleep phase disorder.. more circadian rhythm stuff, onset often in adolescence can be lifelong and am panicking, to be honest. To have felt as if we've come out the other side of PANDAS with dd (still got ds with it but..) only to get hit by this...

 

So...sorry long intro but does anyone have any ideas. It doesn't have a PANDAS feel to it but could it be PANDAS next gen for her? Any PANDAS veterans had kids seemingly permanently remit only to have ongoing sleep issues.

 

I'm just looking for any ideas we can pursue/try. Great ideas for knocking kids out that we haven't tried yet.

 

Sorry for the long post

[emst]

Been there! We are trialing Clonidine w good results.

[dut]

EMST - is it insomnia caused by PANDAS/PANS?

 

thanks

 

 

[TiredMom]

Two things that have helped us when in this same situation is Motrin, given at full dose for several days, and also restricting electronic screen time (computers, cell phones, tablets). The blue light that is emitted can really disturb your sleep patterns. I hope she (and you) gets some relief soon.

[MomWithOCDSon]

I don't have any great ideas, unfortunately, Dut. But just wanted to give you a cyber hug and tell you I'm thinking of you and your DD. I'm sure this is all very frustrating, and I hope you're able to get to the bottom of it soon. I suppose, lacking any other lasting relief, maybe getting DD into a sleep study at your local teaching hospital would be a possibility? Maybe they can figure out what's keeping her awake or waking her before she gets a full night's sleep.

[pr40]

to second TiredMom and to add 5htp.

works for us

[qannie47]

CALM: magnesium with Calcium. magnesium is a wonderful muscle relaxer, as I suspect you already know. Give her 2 HEAPING TBL dissolved in hot water and cooled with ice cubes. I use this for tic reduction for my adhd child whom can be a bit ticcy from concerta.

 

I tried it once because I was curious...It knocked me out....

 

Give 10 min before bedtime...

[melmix]

Clonodine at the lowest dose works for my son.

[dut]

Thanks for all the ideas folks and the cyber hug MomwithOCDSon I needed it.

 

Things are looking slightly less desperate and I'm not sure if it's coincidence or whether this is just her PANDAS as it now stands because her sleep has improved since we added in azithromycin!

 

Honestly, I could spot a PANDAS flare in dd at 50 paces and this is nothing like that AT ALL. Not even the sleep thing is the same. Very different presentation and flavor but the abx may well be working. It's still early to say for definite and it could be coincidence but I'll take it.

 

It'll be interesting to see if the better (not great) sleep holds and improves and if it does and she gets another jag at a later date, if abs pulls her out again.

 

Thanks again...

[dut]

Okay, so that was short lived. Dd's sleep tanked again last night. She managed to finally fall asleep at 12.15 until 1.45 am and then from about 4am until 6am. Then fainted when she got out of bed. Still feeling faint and dizzy, especially upon rising from a sitting position. Joy

 

 

I will ask in a post all of it's own but has anyone tried rozerem ( generic ramelteon) for sleep? It's a melatonin agonist that acts on MT1 and MT2 receptors.

 

 

[sf_mom]

I am wondering if she has started her period? If so, is their an imbalance in her hormone levels. Mostly are her progesterone levels on target. Progesterone can be very calming and allow for a great nights sleep.

 

I take Pregnenolone 10 m.g. prior to bed and sleep soundly from 10 p.m. to 6 a.m. Previously to Lyme treatment I was up every night from typically 4 a.m. to 6 a.m. Just as my alarm was going off, I was falling back to sleep. Also for me, hormone therapy was a turning point in my Lyme treatment. I am not sure if it was just hormone therapy but something worked at that time.

 

Here is some interesting information on Pregnenolone.

 

"Pregnenolone is also being considered as a potential treatment for schizophrenia.^[1]"

 

^{https://en.wikipedia.org/wiki/Pregnenolone}

[dut]

sf_mom - yep she has. I had been thinking of progesterone. There did seem to be a loose correlation with insomnia jags just before her periods.

 

I had mentioned it to her ped. But she felt that her levels would be so out of whack as she's 12 that testing would be of little point but there's normal out of whack levels and crazy whack levels.

 

We're back to the ped. Today and will raise it again, and ask for some testing or maybe some trialing of hormones.... I had assumed it would be progesterone but will go and look at pregnelone now, so thanks for the info.

 

Perhaps the hormones helped with the pandas but created a different beast. Thanks again for the input.

 

Right off to google pregnenolone and I'll look at that link too

[sf_mom]

There is all kinds of information on the internet about pregnenolone.... some good, some beware, some bad.

 

I am always the ginny pig. Hence, you might purchase 5 m.g. sublingual for yourself and try it for a week and see if it helps you sleep better. It is very helpful to me.

Edited January 22, 2016 by sf_mom

[dut]

Thanks for info sf_mom. I'll give it a try.

 

We just got back from doctors and as dd was experiencing fainting upon rising they tested her for POTS and she came back with an increase of puilse of 42 (>30) supposedly is diagnostic of POTS and had a blood drop from 100/60 to 86/60 after 10 mins.

 

So... we've been given an adrenal calmer fortnight use (ashwaganda, l thiamine, magnolia and phsphatydylserine (SP) and then hydrocortisone for use in am and afternoon to help give her adrenalsa break.

 

I am not seeing a huge lot mentioned on google re insomnia and POTS alto' most sites do mention sleep disturbance. So we'll see. Headaches and stomach aches do get a mention re POTS and she does get these.

 

Ped wasn't up for looking at girlie hormones and thyroid yet, as she says they will be out of whack if adrenal are as they are foundational for the others.. let's sort this and then go after those if still issues.

 

So fingers crossed this helps her get some sleep.

 

As always if anyone has ideas..