Not getting Sleepy...Any One Help

[Burnell]

Our dd 12, takes 3-5 hours at night performing OCD rituals. Even though at night she takes Rehmeron and melatonin, up to 10 mg.

Anyone have any advice on how to get a raging mind to settle down? Her OCD ritual list seems to keep growing. We are at an OCD- CBT clinic in Florida but at night she seems to just stay at a level 10/10 and not be able to settle down at all. She sometimes reaches out with both hands doing the rituals. She complains of seeing fingers. She has to wipe them away. At night its like these images have her surronded. She gets very angry and is often up till 2 am

[SSS]

I am so, so sorry.

 

I apologize, I don't remember your dd's history (I believe she has had a HD-IVIG?)

But is she on antibiotics?

If it were me, and I had a 12 yr. old who was in such a severe place, I would try to get a trial (prescription) for Augmentin XR at the 'Saving Sammy' dose.... just a thought as I read your post, seems to really help some of the older kids?

 

We have found with giving melatonin, that we need to give it right before bedtime- no more than 10 minutes before getting in bed- otherwise, it can have an effect of the opposite, ramping her up. I give a chewable (just 1 mg) in the bathroom as we are getting ready for bed.

 

I have a neighbor with a ASD DS7, she was using 5mg of melatonin, and it stopped working, she went to her Dr. about it, he told her to reduce the dose, oddly, and she did, and it worked again.

 

Hang in there--

[peglem]

We have this problem from time to time. Its a vicious cycle- the sleepier you get, the harder it is to resist the obsessive thoughts, which makes you sleepier.

 

We were using a combo of valerian root and melatonin which worked wonderfully for awhile. But I noticed when we were having problems again, and ran out of valerian, that she did better w/o the valerian. Now we are giving zinc throughout the day and magnesium w/ melatonin at night and that is working fairly well. Also have increased B vitamins throughout the day (we use SuperNuThera).

 

Nothing affects my child more than lack of sleep-she rapidly follows a downward spiral in mood and functioning.

[momaine]

Assuming you are addressing the infections, this is what I have tried. Maybe something will be of use to you.

 

My dd has fewer compulsions downstairs, so I didn't make her sleep in her room. When she felt more capable of it she tried again. She spent MONTHS on the couch on more than one occasion.

 

We tried Melatonin and it helped if she wasn't in a horrible exacerbation. But when it was taking her hours to settle down and finally get to sleep, I finally broke down and asked my dr. about prescription options. One was a sleeping medication but it was expensive ($60 co pay) and I wasn't sure it would work anyway. I chose not to pay that price but instead tried a prescription of a mild sedative called Ativan.

 

Now, while it didn't stop the compulsions all together, it did make her sleepy enough that she would fall asleep on the couch watching TV even though she may not have felt like she finished all the compulsions she had the urge to do. She didn't feel like it reduced her anxiety a whole lot but the sedative effect was just enough to help her quiet down. We only ended up using about 15 pills out of a 30 day script and then she was able to deal with it again on her own without it being quite so anxiety provoking.

 

We only used .5mg. I would do it again in a heart beat. It's not something you want your kid to take every day, but it seemed to get her out of a rut she was stuck in with bedtime compulsions. It can be addictive so we didn't use it every night, but just on the worst ones.

 

I don't meant to push drugs, but I was to the point that I felt I had to DO SOMETHING instead of watching her suffer. We have some on hand if we ever need it again. I'm hoping its a thing of the past though.

[butterflymom]

=

Edited October 7, 2015 by tampicc

[peglem]

I've become interested in the KPU protocol (pyroluria, a deficiency of zinc and B-6), and it is supposed to help sleep to take zinc in the morning, and P5P (form of B-6) in the evening.

Interesting...this is essentially what I've been doing with my daughter. (the P5P is in her SuperNuThera) Just prior to starting this, even with the melatonin, she was not only having great difficulty getting to sleep, she was not rested upon waking. So I think its improved the quality of her sleep as well.

[Burnell]

I am so, so sorry.

 

I apologize, I don't remember your dd's history (I believe she has had a HD-IVIG?)

But is she on antibiotics?

If it were me, and I had a 12 yr. old who was in such a severe place, I would try to get a trial (prescription) for Augmentin XR at the 'Saving Sammy' dose.... just a thought as I read your post, seems to really help some of the older kids?

 

We have found with giving melatonin, that we need to give it right before bedtime- no more than 10 minutes before getting in bed- otherwise, it can have an effect of the opposite, ramping her up. I give a chewable (just 1 mg) in the bathroom as we are getting ready for bed.

 

I have a neighbor with a ASD DS7, she was using 5mg of melatonin, and it stopped working, she went to her Dr. about it, he told her to reduce the dose, oddly, and she did, and it worked again.

 

Hang in there--

[Burnell]

My dd12 had ivig thru the NIH study this spring. what is HD-IVIG? She has been on augmentin to 2000mg and is now on amoxacillan. Since the ivig, it's been 3 months. Her blood tests for aso tieters and DNase b are fine now, but her OCD is raging. What are these B vitamin supplements with zinc as a sleep aid? where do u get them, and how much do you give and when during the day?

[peglem]

My dd12 had ivig thru the NIH study this spring. what is HD-IVIG? She has been on augmentin to 2000mg and is now on amoxacillan. Since the ivig, it's been 3 months. Her blood tests for aso tieters and DNase b are fine now, but her OCD is raging. What are these B vitamin supplements with zinc as a sleep aid? where do u get them, and how much do you give and when during the day?

I get my child's multi-vitamin online from Kirkman's- SuperNuThera with P5P. I give her 4 or 5 tablets/day- just whenever throughout the day. But, I give extra zinc- just over the counter stuff from my local store. I give about 3X the RDA of zinc, again, spacing throughout the day. I don't think the zinc induces sleep though, more like prevents inability to sleep. I've been giving magnesium throughout the day as well, with a higher dose at bedtime.

[LNN]

There are several families on the lyme forum who are following a KPU/pyroleuria protocol (including my son). If anyone is interested in details, you can post there. There is a mega-supplement called Core from Biopure that is often used as a way to reduce the number of pills you have to take (sheer quantity of pills can become a big issue in lyme treatments). Here is the primary article on the subject:

KPU

 

It is somewhat dated (written before Core was available). So some of the treatment protocol has changed and I would not recommend following this without the guidance of a doctor and without having done the KPU urine test from Vitamin Diagnostics beforehand. Too much of any vitamin or mineral carries risks of toxicity. So it's not something I'd feel comfortable supplementing without lab numbers to guide you. KPU cannot be detected with blood work. It's not a condition of lack of zinc in the blood but rather an inability to efficiently utilize that zinc. There may be adequate blood levels but much of the zinc gets excreted without being used.

 

As far as I can tell, the difference between KPU and pyroleuria is that both are due to the ineffective use of zinc/B6 et al. Pyroleuria is like having a gun shoot blanks at an immune problem. KPU is the same condition except it carries the added burden of heavy metals, where the body has grabbed mercury or other metals in an attempt to make up for the lack of available zinc. So, a gun firing mercury instead of bullets. The danger in treating KPU without medical guidance and a chelating absorber is that when you give the body the good stuff, it will drop the mercury in favor of the zinc but then you have mercury floating around in the body, ready to be re-deposited. So you need to add stuff to soak it up and remove it from the body - clay, chlorella, DMSA, etc. It has, so far, made a significant improvement in my son's situation, but we're only now approaching the 3-6 week mark where things can get hairy with metals issues. Too soon to declare victory. This isn't something I'd try to treat with supplements without guidance. I doubt "main stream" doctors will buy into this. The only research I could find on it was 30 years old and related to schizophrenia. The research was mostly abandoned once it failed to show a direct link. But this was back when ulcers were thought to be caused by stress and when no one was yet connecting infections and mental health. A few doctors have taken it back up and pursued it. But not in double-blind research trials. So it would be a leap for anyone outside the DAN/lyme medical community to go here with you. But...you never know.

 

Zinc is critical to a well functioning immune system. It is a ying/yang element with copper. So mega supplementing with zinc requires periodic checking on copper levels. Nothing I've read indicates it's involved with sleep issues, per se. It is however, essential to the immune system, so I could see where addressing a zinc issue would have a cascading effect on the rest of the body. (Tampicc - FWIW - we've been told to take Core at dinner time, not in the morning. Not sure what other families are doing).

[MomWithOCDSon]

Our dd 12, takes 3-5 hours at night performing OCD rituals. Even though at night she takes Rehmeron and melatonin, up to 10 mg.

Anyone have any advice on how to get a raging mind to settle down? Her OCD ritual list seems to keep growing. We are at an OCD- CBT clinic in Florida but at night she seems to just stay at a level 10/10 and not be able to settle down at all. She sometimes reaches out with both hands doing the rituals. She complains of seeing fingers. She has to wipe them away. At night its like these images have her surronded. She gets very angry and is often up till 2 am

 

Burnell --

 

So sorry you're going through this; I know it is exhausting. And I'm sure you're apprising the Florida clinic team of these night-time issues? I would have to believe that they will have some valuable, experienced advice to share.

 

Have you and the doctors looked into what the remeron is bringing to the table? I believe it is a mood stabilizer, yes? Is it possible the dosage on that needs adjustment? Perhaps that is activating your DD?

 

Does it appear that the rituals are worse at night than during the day? Does she seem to be gaining ground in the intensive program during the day but moving backwards at night when she is away from the clinic and its team? I have seen our DS and other kids make strides when in the company of other caregivers, only to retreat to well-worn habits with their families at home. The Florida program, if it hasn't already, I believe will help address these "what to do at home" sorts of issues so that you can help your DD in these crisis moments away from the therapists. But if my understanding of the program isn't accurate, then I would certainly ask the team for help in this regard.

 

During the worst of exacerbation, my DS14 also has trouble settling down for sleep. We've found that both valerian root and melatonin helps tremendously, but sometimes he needs some extra assistance. When that happens, I will do the following: he lies in his bed with the lights off, and I sit in a chair at bedside. We go through some very basic, calming visualizations to help him calm his mind. I ask him to envision himself in his favorite, calm, quiet place. I quietly help him with some details of his visualized environment . . . the feel of the sun on his skin, the color of the sky, the sound of the creek passing nearby, etc. Then I will ask him to make small physical movements, body part by body part, so that he can relax them: stretch your toes, let them go limp, stretch your legs, let them go limp, breathe deep and slow, feel the air come in and go out, etc. Many times, by the time I've worked my way from his toes up to this head, he's fallen asleep on me!

[tpotter]

Our dd 12, takes 3-5 hours at night performing OCD rituals. Even though at night she takes Rehmeron and melatonin, up to 10 mg.

Anyone have any advice on how to get a raging mind to settle down? Her OCD ritual list seems to keep growing. We are at an OCD- CBT clinic in Florida but at night she seems to just stay at a level 10/10 and not be able to settle down at all. She sometimes reaches out with both hands doing the rituals. She complains of seeing fingers. She has to wipe them away. At night its like these images have her surronded. She gets very angry and is often up till 2 am

 

Honestly, if she's seeing fingers, she is probably having hallucinations. Also, if her mind is racing, these may also be auditory halluicinations. Both my kids had them at their worst, and hallucinations can be caused by strep and other infections. Is she still taking abx for strep? PEX helped my boys significantly, and so did IVIG...it just took longer. We did IVIG ever 6 weeks. PM me if you want more information.