Has anyone addressed SLEEP DISORDER?

[bubbasmom]

My son's first symptom to come and last to leave is a huge sleep disorder. If I would pay attention I would maybe have a bit of a heads-up to the onset of PANDAS each time. My son can't get to sleep at night and can't wake up in the mornings, even for fun stuff. During the height of PANDAS it's sometimes 4 or 5 am before he can fall asleep and 2 or 3 in the afternoon before I can wake him up. And when I say wake him up that means every 15 mins shaking him, yelling at him, doing all I can.

Now that he's no longer in what I consider a full blown episode (better as of April) we still have big time sleep issues. This is the main reason he was partially home bound from school last year and I really want him back in regular classes this year. He went 4th hour last year.

I saw on the mystery diagnoses clip about Sammy how he wouldn't sleep in his bed because of a stripe on his comforter. My son will not sleep in his room at all, hasn't since onset in September. But now that he's better and can talk to me about stuff, he still won't tell me why. Just says 'it's hot' (and I'll give him that, summer on our second floor is warm) but still it's an excuse. He sleeps on the couch on the first floor.

We're in the 'do not disturb' phase of PANDAS where we are so relieved that things are going well we just don't want to mess with anything and we don't want to go to even one more doctor for fear of triggering something. Do you think a sleep doc could help? Anyone tried it?

[tpotter]

Absolutely. And the docs did talk about sleep disorders as symptoms on Friday at the meeting. I was just looking back at video we had of our DS 14 (then 8) when we first saw the symptoms. It was terrifying. Horrendous night terrors that he was able to tell us partially about later when he came out of it. He couldn't remember anything unless prompted (like: "why were you screaming I'm going to kill you, I'm going to kill you", and wouldn't stop attacking me (turns out one time he was being attacked by aliens.) These would go on for 2 hours. Sometimes they would start while asleep, and sometimes they would start as we were trying to wake him up in the a.m. We did have a sleep study, and a consult with a sleep specialist, and they found nothing (this was before we finally got a diagnosis at 12 years old!) He still has difficulty with going to sleep, and staying asleep. Being tired will also trigger him.

 

Our older son has been having terrible difficulty getting to sleep at night, staying asleep, and waking up in the a.m. We even bought him a new mattress, because we all thought it was the mattress. Definitely wasn't. He's also having other symptoms of flare-up, but the sleep problems are by far the worse. Also, when he goes into a rage, I have started reminding him to go take a nap, because he is always really, really tired, but doesn't realize it. He will always argue with me, but always ends up going to sleep (I told him that it's his sign that he's tired, just like my first sign of having asthma will be that I become horrendously tired, and nothing wakes me up. If I let it go long enough, I realize that I'm really tight.)

[Worried_Dad]

Hi, bubbasmom:

 

Totally sympathize with your and your son's situation! The sleep disruption was one of our son's first symptoms, too, and nothing we tried seemed to help. We tried a succession of sleep meds (ambien, sonata, etc.) and they were worse than useless: gave him bizarre hallucinations and didn't make him sleepy at all. Tried every supplement and herbal sleep med we could find (melatonin, somulin, etc.) with mixed results at best. At one point, our son was literally pulling all-nighters 2-3 times per week, which totally wrecked his health, made his emotional state even more fragile, and exhausted Mom and Dad as well.

 

Luckily, now that his overall condition is improving steadily on the augmentin XR, the sleep problems have resolved, too! (Although - as you mentioned - this was one of the most intractable symptoms and didn't resolve 'til the bitter end.) I hope your son will experience this improvement, too, over time!

 

We do continue to use some OTC sleep supplements to help at bedtime: benadryl, somulin, melatonin. Whether it's "placebo effect" or not, he depends on these at night - on a few occasions when he forgot to take them, he had real trouble getting to sleep. We get him up at the same time every morning now, and that seems to help, too. (Although, like you, we tried this during exacerbations and it was an utter failure then.)

 

Of all the prescription meds we tried over the last 3 years, only one seemed to help with his sleep issues (getting to and staying asleep) when PANDAS times were rough: desyrel. It's an antidepressant prescribed "off label" for chronic insomnia and was recommended by our DAN doc. It really did help for a while after our son's 2nd major PANDAS exacerbation, but we had to keep upping the dose and finally stopped it due to side effects. After our son's 3rd exacerbation, when he could not sleep at all, we tried it again. That time, it caused suicidal thoughts (a well known side effect for children and teens) so we quickly discontinued it. Don't know if this is just because each exacerbation inflames a different area of the basal ganglia... but the symptoms and useful treatments for our son definitely morphed from flare to flare. What a frustrating disorder!!!

 

Good luck to you. I hope you find something that works for your son!

[kimballot]

Bubbasmom - First off - i am so happy to hear that things are evening out for you and that you can focus on the sleep issue! I've read many posts saying that the separation anxiety at night is the last symptom to linger even after all other symptoms have gone and this is certainly our experience!

 

My son also feels warm at night in his room - winter or summer. He sleeps with 2 fans and an air purifier blowing on him, and I leave them on all the time (even when he is not in his room) to keep the air circulating and to keep it fresh in the room. I've found it best through the years to lay down in - or sit at the end of- his bed with him while he falls asleep during an exacerbation. While it takes up lots of my time, at least he is in his own bed. Once the exacerbation ends and he is able to fall asleep easier, I try sitting at the end of his bed with my laptop (while I read the forum for more ideas!)... then I tell him that is not comfortable and I sit on the floor near the door... then I sit in the doorway.. then the hall... a couple days at each place and eventually he can do it alone. Then I jump up and down for joy and enjoy my new freedom until he one day says "Mom, can you lay down with me" ... and then I know to look for an infection.

 

I also give him melatonin at night and I am thinking about swithching to 5htp as I have heard that this also works but has an appetite suppressant (though his appetite is way down now that his exacerbation is ending).

He usually falls asleep within 1/2 hour of melatonin, but even this did not help with his las exacerbation and he was up until 1-2 in the morning.

 

In the past, we've also found that having an NICE audiobook on while he falls asleep helps as it keeps his mind off whatever the thing is that scares him (he will not tell me exactly what the bad thought is).

 

I hope that is helpful and I do wish you well! It is so nice to read this update from you!

[bgbarnes]

We had horrible sleep issues for years from about 18 months old when I think PANDAS probably started.... we slept with my son just so we could get some sleep too. It took years to get him to sleep by himself. He was waking up all the time at night- some times several times- we did a sleep study and turns out he had Obstructive sleep apnea- the tonsils and adenoids did not look enlarged when you looked into the throat but when he laid down they somehow blocked things and he stopped breathing or had shallow breathing every 5 minutes on average. So combine that with a PANDAS brain that when in exacerbation- hallucinations- wild dreams etc... he was sometimes knocking on our door 4-5 times a night. For a long time I had to snuggle him to sleep- sometimes it took 45 minutes. POST T&A we have a boy that on a general basis can sleep by himself and through the night and I only snuggle for a few minutes and he goes to sleep by himself. I emphasis it took years to get to this point. Now when we are in exacerbation - the lights have to be just so- the door must be closed, he ALWAYS has specific soft pillows- a soft blanket and his lovey, a heavy comforter.

Exacerbation signs for us are multiple night wakings, night sweats, enuresis ( which was constant prior to T&A.) So we have really had great success post T&A and the few times he does wake us up now we almost expect it because he might have had a period of cognitive inflexibility or a rough PANDAS symptoms day- or vice versa- if he woke up because he "saw a spider in his bed" then the next morning tends to be a little rougher.

Good Luck!

Brandy

[bubbasmom]

As with everything else with PANDAS it's nice to know you are not alone. When I hear others describing things that sound just like my son it amazes me that I didn't catch PANDAS earlier in life of my son. I think the sitting by him at night is key I just don't like to because like some of you after I get my kids to sleep is MY time. So sitting with him for a couple of hours I always fall asleep. I guess this too shall pass (although sometimes that's hard to believe).

Edited July 18, 2010 by bubbasmom

[Suzan]

Hi, I posted my sleep problems today before I saw your post! As you can see, if you saw my Sleep Fear post that we have the same problem. I have tried so many things over the years that fail or work and then fail. The only thing that we officially addressed was that when younger, she had sleep apnea and that was taken care of with her tonsils and adenoids coming out when she was 5. Then, when she was 6.5 and still wetting the bed, she went through a program that indicated she was wetting the bed because she was not getting proper sleep REM cycle. She went from awake to dead asleep and stayed there so her body was not waking her up to tell her she had to go to the bathroom.

 

Anyway, other than that, we have not been evaluated for any other sleep issues. I do hear your frustrations though and I can totally feel for your situation!

Susan

[mkur]

Lack of sleep is a BIG problem for my child. We treated the symptoms medically for years - stimulates to wake him up and clondine to put him to sleep. Clondine is what tourette doctors use. It works but I would have to give it to him so early around 6pm in order for it wear off by morning. That means the child had no life outside of school. His brain was mush from 6:30pm until 8pm - no after school activities such as sports and major problems with homework - he could do the work but would not remember it - total waste of time. And if he fell asleep in class - more homework.

 

For the eye rolling crowd - he could not sit still long enough to do homework after school. He needed to unwind. He is also a 12 hour sleeper and has to be asleep by 8pm in order to get up the next day and function. Lack of sleep => Bad day.

 

His school would only let him miss 1st period. They do attendance 2nd period and you cannot miss it because the school gets paid for each child present at 2nd period. UGHH!!! Another issue that needs to be fixed.

 

When he fell asleep in class (grades 2-8) it wasn't really an issue - they just wanted him there 2nd period so that they would get paid. Now high school is a whole different story. You can only miss 3 days per period or you don't get credit plus you have to be there 2nd period.

 

Lots and lots of luck - I feel your pain.

[dut]

hi - we just got adrenals tested for both our kids and they both have problems. Adrenal problems can really impact sleep, especially mucked up cortisol rhythm.. difficulty getting to sleep, staying asleep and also waking up.

 

I am wondering if PANDAS can affect the hypothalamus directly or via the basal ganglia and thus mess with the hypothalamus-pituitary-adrenal axis or if just the stress of this disorder may be the culprit.

 

Anyways, if it is adrenals, then things can be done to help get the sleep back on track...

[wornoutmom]

Suzan - we are still dealing with enuresis off and on at age 14 (though it has been much much better since the IVIG 5 weeks ago). Ds has been on and off DDVAP since age 9 for this. When you found out about missing the REM cycle, did they give you any tips on how to help this????? During exacerbation he is like a dead log when he sleeps - you just can't wake him, and sometimes if you do he is in a literal stupor. This year he couldn't seem to keep his eys open - fell asleep in class almost everyday...

[EmersonAilidh]

I went from pulling all nighters two or three times a week (& only getting three or four hours when I did sleep) to sleeping twelve+ hours a night with multiple naps a day overnight. The insomnia lasted for about four years, this sleep pattern, which looks like Narcolepsy, has lasted about a year. My old neurologist was VERY into off label, somewhat experimental medication (but God forbid he prescribe antibiotics...), & so I ended up taking more benzodiazapines than I can even name (the only ones that did ANY good being Klonopin & Mirtazapine, although the side effects made them so not worth it), & even more off the wall pills like Aricept, for Alzheimer's, & pills for severe Epilepsy & Schizophrenia, all to make me sleep. I tried L-Tryptophan & every other vitamin/supplement under the sun to no avail, even swallowing nearly 30 mg (I can't remember if it was g or mg... Forgive me on that one) of Melatonin when I got frustrated did nothing.

 

Oddly enough, I found relief at 7-11. I've never liked recommending Drank, the "anti-energy drink", just because it's marketed to imitate the effects of a popular hip hop drug called Lean, but there is NOTHING illegal in it & it is COMPLETELY non-alcoholic. In all honesty at that point my Mom didn't really care if I had to drink a can a night to sleep as long as I was sleeping. It worked better than any sleeping pill with NO side effects for me. It tastes good, too, which is obviously a plus for little ones.

Like I said though, you just kind of have to ignore the can. It's marketed as an "Extreme relaxation" beverage, & that's exactly what it is. It helped me sleep better than anything else I've ever tried. The can/slogans might lead you to believe that it gives you some sort of intoxicated feeling, but it really doesn't. I'd just have a can on my nightstand everynight & I would be fast asleep before it was even gone.

 

Ingredients : Water, high fructose corn syrup, sucrose, citric acid, natural flavor, sodium citrate, potassium benzoate, potassium sorbate, niaciamide (Vitamin B3), D-calcium pantothenate (Vitamin B5), valerian root extract, rose hips extract, pyridoxine hydrochloride (Vitamin B6), Red 40, melatonin, Blue 1, cyanocobalamin (Vitamin B12).

Full 16oz can : 220 calories, 120g sodium, & 54 sugars.

 

Not exactly the healthiest, & a lot of people don't get the good results that I did.. But I'd honestly say it's worth at least a try.

[peglem]

Ingredients : Water, high fructose corn syrup, sucrose, citric acid, natural flavor, sodium citrate, potassium benzoate, potassium sorbate, niaciamide (Vitamin B3), D-calcium pantothenate (Vitamin B5), valerian root extract, rose hips extract, pyridoxine hydrochloride (Vitamin B6), Red 40, melatonin, Blue 1, cyanocobalamin (Vitamin B12).

 

My guess would be, if you say melatonin did not help you, is that it was the valerian root that does the trick! Did you ever take valerian root by itself? Allie does valerian root and melatonin every night. The melatonin gets her to sleep and the valerian keeps her that way! Although last night....ugh, lets not talk about that!

[EmersonAilidh]

Ingredients : Water, high fructose corn syrup, sucrose, citric acid, natural flavor, sodium citrate, potassium benzoate, potassium sorbate, niaciamide (Vitamin B3), D-calcium pantothenate (Vitamin B5), valerian root extract, rose hips extract, pyridoxine hydrochloride (Vitamin B6), Red 40, melatonin, Blue 1, cyanocobalamin (Vitamin B12).

 

My guess would be, if you say melatonin did not help you, is that it was the valerian root that does the trick! Did you ever take valerian root by itself? Allie does valerian root and melatonin every night. The melatonin gets her to sleep and the valerian keeps her that way! Although last night....ugh, lets not talk about that!

 

Getting to sleep is no longer the problem for me, staying awake is, haha. Although I'm sure that's an odd thing to post at 2:42 in the morning. Getting strep yesterday has put me in a downright dismal mood so I stayed up watching musicals to try to make myself feel better.

But, if the insomnia ever returns I'll be sure to try that! The drink was before I cared too much about my diet (just vegetarian at that point), & I can walk to 7-11 from my house, so although the Valerian root did cross my mind it wasn't as convenient. :/

[Suzan]

Suzan - we are still dealing with enuresis off and on at age 14 (though it has been much much better since the IVIG 5 weeks ago). Ds has been on and off DDVAP since age 9 for this. When you found out about missing the REM cycle, did they give you any tips on how to help this????? During exacerbation he is like a dead log when he sleeps - you just can't wake him, and sometimes if you do he is in a literal stupor. This year he couldn't seem to keep his eys open - fell asleep in class almost everyday...

 

That's what my dd was like, you could not wake her. Sometimes she would lash out and fight you in her sleep if you tried to wake her up. Whatever she did, she would not remember.

 

The program we used gave us an alarm pad that she would sleep on and when she urinated on it, the alarm would sound. This is when the work started! Her job was to wake up, turn off the alarm, go to the bathroom and splash water on her face, use the bathroom, dry the alarm and change the casing and go back to sleep. I was to keep a log of when this happened and how much she was able to wake up and how much she pee'd. At first, she would not wake up. That alarm would be going off and she was dead asleep. I'd have to shake her and she'd finally get up and start to fight me. For a long time, she could not even remember any of what happened in the night and it would happen 2-4 times a night! The goal was to get her to wake totally up so that she could start a REM cycle over and retrain herself to be able to come out of sleep enough for her brain to tell her that she had to go.

 

Over time, this actually worked. It took 6 months. It was hard for me to understand why I would want to wake up this kid who has trouble sleeping. And at times we almost gave up because it was so much parent participation. But eventually, her accidents got smaller and less frequent and then she started waking herself up before the accident. It's been 2 years now and she's been accident free except for one time when she had strep.

 

Susan

[Luna2]

Hi - Our dd 12 has had sleep issues for years that are much worse with PANDAS. I try to give her the most natural stuff first. She has many eating issues since PANDAS so things need to be easy to swallow and good tasting. Most nights I use Yogi Bedtime tea with a dropperful of Eclectic Institute Chamomile & Catnip tincture in glycerine (tasts sweet and minty and goes well with tea). Finally, I add honey. That is step #1. If that doesn't work, I go to melotonin 1-3 mg. depending. If things are still reving up I add a back rub with a magnesium massage oil that I made. Finally, I resort to clonipin or benedryl if she is still bouncing off the walls. I try to start early with the tea or melotonin but sometimes it just doesn't matter. Dd sees monsters when she is really flared up and then it is clonipin time. We have a pad we throw on the floor in our room that she can sleep on. Any other natural remedies out there?