Is anyone's child UNABLE to sleep?

[FallingApart]

Hello,

 

I know we have talked a lot about sleep but I don't know if anyone else has this problem other than us. DD is in the middle of a PANDAS episode right now and it is not good. I don't have much energy to write but I feel that our situation mirrors pixiesmom in intensity. DD is completely exhausted. We cannot give her Benadryl or it will have the opposite effect. We have been giving her Melatonin, Kids calm and epsom salt baths. We have been successful in getting her to fall asleep. But, she wakes up at 3:30 or 4:00 am each day and cannot fall asleep again. And then the rages start. For the rest of the day.

 

In the past we had tried giving her Benadryl at 3:30 to try and drug her to sleep but it backfired. Our ped recommended GABA if she was unable to sleep through the night. However, given how bad things are over here and the effect Benadryl has, I wanted to check with you all first. Has anyone tried this? Our ped said it "should" help someone get an uninterrupted night's sleep.

 

Also, I know people have mentioned 5 HTP. Can this be used in conjunction with Melatonin? What is its purpose? To fall asleep or stay asleep? I know the Melatonin works for us so I want to keep that one. But we all need some sleep over here and are wondering what else we might be able to add. Does anyone have any thoughts?

 

Thanks so much!

[KeithandElizabeth]

I am sorry that you all have been through so much!

 

We also had the same night time experiences. Melatonin was a miracle in helping us get our son to sleep, but didn't help with the nightly awakenings and then the up at 4:30 am for the day stuff. Now, we didn't have many rages, but our nutritionist put our son on mega doses of calcium (2,000 mg a day) for anti-inflammatory reasons and I always wondered if this helped with the rages because he did have a few before we started the calcium and then he didn't have them anymore. You never know. He was also taking sublingual B-12 at 5,000 times 8 pills a day!

 

Let us know how you are doing.

 

Elizabeth

[Suzan]

I am sorry you are having such a hard time! Have you tried the slow release (timed release??) melatonin? Maybe this would help stay asleep at night. We have never tried it but used to have trouble staying alseep as well.

 

Susan

[FallingApart]

Elizabeth, do you know the thinking behind the calcium and B-12? Why was your child taking those?

 

Also, for the time release melatonin...I think this is a great solution. But DD is only 3 and I can't get her to take a pill unless it is something palatable that she can suck on like a tic tac. We are doing the liquid melatonin. I can put something tasteless in her drink or something gross tasting in a syringe followed by a tic tac. Do I have any other options?

[KeithandElizabeth]

Basically calcium is anti-inflammatory. We were on the high doses because we in stand by mode with the doctors and needed some help in the short term. We did give 2000 mg. a day to our son every day for almost 3 months. B-12" maintains the health of nerves and other cells. It helps create and maintain the myelin sheath, a protective sheath around nerves that facilitates in the rapid transmission of nerve impulses."

 

I realize as I am writing this that we quit all these supplements after we did IVIG and I am thinking we should start back up to help with our frequent urination issues. Many DAN doctors work with B-12 with their patients with Asthma, Allergies, Autism and Aspergers.

 

https://www.thebodyhealer.com/supplements/s...ofile.asp?id=10

 

Elizabeth

[Kayanne]

Didn't she just start some a month long course of prednisone?

 

I don't know how long this her sleeplessness has been going on, but Dr. L told us that the two main side effects of pred are mood changes and insomnia.

 

She told us if she couldn't sleep, then to make the morning dose bigger, and the evening dose smaller. For example, for us the amount of pred was 2mls 2X/day...she said if sleep was an issue then do 3ml in the morning and 1ml at night.

 

are you currently on 4mls 2X/day? If so, them maybe you can ask the dr. if it is okay to do 6mls in the morning and 2mls at night....just a thought.

 

~Karen

[FallingApart]

I didn't know that about the supplements. I will think about adding them for her.

 

Yes, she did start the prednisone. But this waking at 4 am happens with each PANDAS exacerbation-steroids or not. DH and I have certainly been wondering if the steroids could be adding to the sleeplessness though. Since it is already half way through the day, could I give the steroids to her 3 times today? 4 this morning and 2 this afternoon and 2 tonight?

[Megs_Mom]

We were so desperate for sleep that I slept with her - for months. If I could rub her back and sing gently to her before she woke up completely, then she could fall back asleep. If I was not there, then the night was ruined. I am now awoken by a hairpin falling, as for so long, my immediate responsiveness was required to have a decent night sleep for everyone. I feel like I did when I was pregnant! To this day, she still wakes up at 4 am, but I can now put her back down pretty quickly. I think we have had about 10 full nights in the last month, and I am amazed by everyone. We are just starting to work on her putting herself back to sleep, which she can now do at bedtime, but not in the middle of the night.

[momtocole1]

We tried Melatonin with my son for quite a while and I felt that it made him rage more. I could have just been the PANDAS but it seemed to get a little better when we stopped. We now give him 2 teaspoons of Calcium/Magnesium before bed, mixed in with OJ. If he does not have it now, he has trouble settling in. Although during this most recent PANDAS episode it is not making dent. If I give him his Augmentin too late at night he seems to have trouble getting to sleep so I am going to start it earlier.

 

Good Luck, I know how hard it is to go without sleep and that feeling that they will wake up at any time!

[Kayanne]

I didn't know that about the supplements. I will think about adding them for her.

 

Yes, she did start the prednisone. But this waking at 4 am happens with each PANDAS exacerbation-steroids or not. DH and I have certainly been wondering if the steroids could be adding to the sleeplessness though. Since it is already half way through the day, could I give the steroids to her 3 times today? 4 this morning and 2 this afternoon and 2 tonight?

 

Sorry, I'm not qualified to really answer that...personally, I would probably leave things the way they were, and call a doctor in the morning....I'm on the East Coast so now drs offices are closed...you may still be able to reach one yet depending where you live.

 

Although, I don't really think the change in dosing will make a difference....I did read on one website that it is important to give the morning dose prior to 9am because it has something to do with when your body realeases cortisol...but it's been months, and I'm going by memory right now, and I have a busy night ahead of me, so I can't search for it now....sorry

[Worried_Dad]

One of our son's most persistent and maddening symptoms was the inability to sleep. At peak points during exacerbations, he would literally pull all-nighters 2 or 3 times a week and be up for 40+ hours straight... would not collapse into sleep until the following day's normal bedtime. And of course, extreme fatigue made all his other symptoms worse. Stressed our entire household to the max!

 

When he first got sick, we tried everything: melatonin, valium, ambien, sonata. The drugs (valium, ambien, sonata) made things worse: instead of putting him to sleep, they made him hyper and hallucinatory.

 

Then our DAN doc suggested desyrel - an antidepressant that is prescribed "off label" for insomnia. That, in combination with melatonin, did the trick. His sleep cycle finally stabilized and the all-nighters stopped. But over time, we had to keep increasing the dose and seemed to be seeing side effects. That made us nervous, so we eventually tapered off and just tried nightly benadryl instead.

 

Honestly, the best cure we found for our son's insomnia so far: IVIG and mega-dose augmentin!

[pixiesdaddy]

Just fyi,

 

Our chiropractor - familiar with PANDAS - asked DD to take two night's worth of GABA as a diagnostic to see if her blood-brain barrier was intact.

 

The theory was - if the barrier was intact - GABA shouldn't do much.

 

If there was a breach - as with a PANDAS exacerbation - GABA was supposed to make her feel calm and peaceful, sleepy.

 

So, if she's having a PANDAS related bout of sleeplessness, maybe GABA would help?

 

Pixiesdaddy

[FallingApart]

Here is an update from last night. Again DD is 3 so the method of giving her supplements has to be considered.

 

We gave her 3 sprays of time release melatonin. But since she wouldn't be able to do the actual spray, I sprayed it into a syringe and then gave it to her orally. Then I also gave her half of the smallest adult sized GABA sublingual tablet. We did instruct her to put it under her tounge and leave it there till it melted. Luckily she is a child that likes to suck rather than chew, so this worked for her. All in all, I think this was a lot of supplements for her. But she was exhausted and was telling us that she wanted to sleep.

 

She instantly fell asleep at 6:30 and slept until 2:30. She started to wet the bed but didn't go all the way and ran to the bathroom and then told me we needed to change the sheets. When I came down to her room, she was resting in her tent. That was how I knew she would eventually go back to sleep. She wasn't raging or playing, but resting. After DH and I changed the sheets she and I climbed into bed. It took about an hour of my rubbing her back and legs, but eventually she did fall asleep. I stayed the rest of the night with her. She woke up a few more times, but when she realized I was there, she went back to sleep until 6:15 this morning.

 

Who knows if that was a one time deal or if we can repeat it tonight. But you can be sure we will be doing that exact same ritual each night until we get to do PEX!

[Suzan]

Who knows if that was a one time deal or if we can repeat it tonight. But you can be sure we will be doing that exact same ritual each night until we get to do PEX!

 

I am glad you got some relief! I hope it continues to work for you. I slept with my children for years to ensure we all got a good nights sleep. If I was in bed with them, they could rest (I think it was separation anxiety partly). I also found that heavy pressure helped them sleep so I made "pillows" out of felt squares and rice that weighed 3 lbs each. I would lay these on their bodies and it would help relax them. I learned that this would help when I saw that they relaxed more if I squeezed their arms and legs really hard or practically lay on top of them to keep them still. All of a sudden, relaxation and sleep!

 

Susan

[Stephanie2]

Maybe try covering her with a weighted blanket. We ordered one online for $100. I have to say that my son hates it, but my friend's son who had pdd-nos loved it and it really helped him sleep. When my son has trouble falling asleep, I put a weighted vest on him for 20 minutes before I lay him down. It really does help him relax. I have never tried it in the middle of the night, though. When he wakes in the middle of the night I either go lay with him in his bed or I just bring him into our bed (in the middle of exacerbation). When my son was 3 he did have a lot of middle of the night waking for hours at a time, he grew out of that, even during pandas (he is about to turn 5). Best of luck...

 

Stephanie

 

Hello,

 

I know we have talked a lot about sleep but I don't know if anyone else has this problem other than us. DD is in the middle of a PANDAS episode right now and it is not good. I don't have much energy to write but I feel that our situation mirrors pixiesmom in intensity. DD is completely exhausted. We cannot give her Benadryl or it will have the opposite effect. We have been giving her Melatonin, Kids calm and epsom salt baths. We have been successful in getting her to fall asleep. But, she wakes up at 3:30 or 4:00 am each day and cannot fall asleep again. And then the rages start. For the rest of the day.

 

In the past we had tried giving her Benadryl at 3:30 to try and drug her to sleep but it backfired. Our ped recommended GABA if she was unable to sleep through the night. However, given how bad things are over here and the effect Benadryl has, I wanted to check with you all first. Has anyone tried this? Our ped said it "should" help someone get an uninterrupted night's sleep.

 

Also, I know people have mentioned 5 HTP. Can this be used in conjunction with Melatonin? What is its purpose? To fall asleep or stay asleep? I know the Melatonin works for us so I want to keep that one. But we all need some sleep over here and are wondering what else we might be able to add. Does anyone have any thoughts?

 

Thanks so much!