Jump to content
ACN Latitudes Forums

Need help with sleep issues...


Recommended Posts

One of the most difficult things that my son is going through is issues with sleep.

 

Prior to IVIG (30 days ago) he was having trouble settling down to go to sleep, but he would get to bed at 10:00 or 11:00 vs. 8:00 or 9:00, so I went with it.

 

Since having the IVIG he is literally up the whole night. He can't go to sleep until about 4:00 a.m. Because he is so exhausted I don't want to wake him up the next morning.

 

I know this seems completely crazy, but I am just letting this happen because of his healing process.

 

His OCD symptoms are so much less than they were. I really am able to P U S H him gently through some of the OCD rituals that continue to bombard him.

 

I have tried so many things to help him sleep, Tryptophan, Tylenol PM, Advil PM, Ativan, Calcium/Magnesium.

 

What concerns me is that even on the mornings that I wake up early (normal wake up time for other kids), he still cannot get to sleep at a decent hour.

 

Any suggestions would be appreciated so much!

 

Thanks,

Link to post
Share on other sites

This was one of our son's most troubling, disruptive issues, too. After each major exacerbation, he would literally pull all-nighters 2 or 3 times a week (which is just terrible for anyone's health) for months. We never really found a "magic formula" to address this problem.

 

For us, the high-dose augmentin XR has now eliminated these completely (knock on wood). The 2 rounds of IVIG last summer did not (as for your son, too, eh?); until we started the 2000 mg of daily XR, the all-nighters continued.

 

We do use an herbal sleep supplement called somulin, plus melatonin, plus Advil PM right now (have been using those for some time). Don't honestly know how much impact they have (not much prior to the XR), but we're afraid to change anything now that his sleep cycle is finally stable.

 

In the early days (when our son's diagnosis was ARF / SC), we tried prescription sleep meds (ambien, sonata), and these were bad news: made him more hyper and hallucinatory. Traditonal anxiety meds like ativan, klonopin, and valium were completely disastrous and made all his symptoms worse.

 

One thing that did seem to help stabilize his sleep cycle for a while early on: our DAN doc prescribed desyrel (an antidepressant) that is used "off-label" for insomnia. That, combined with melatonin, did eliminate the all-nighters for a while. But its effectiveness declined, we had to keep upping the dose, it had side effects (like making him fuzzy / groggy all the time), so we eventually chose to taper off of it to see where we were. This was prior to exacerbation #2, our son's 1st "classic PANDAS" overnight symptom explosion in Summer 2008. That's when the all-nighters came back with a vengeance. Out of desperation, we tried the desyrel again; this time, it quickly triggered suicidal thoughts (a documented risk for adolescents) and we stopped it for good.

 

Wish I had better advice for you. Hang in there - IVIG does seem to cause new symptoms and worsening symptoms for a while for some kids on the forum, so hopefully it's just temporary!

Link to post
Share on other sites

MomtoCole1,

 

We also have had sleep issues (frequent waking, nighmares, not wanting to sleep, bedwetting, wanting all lights on, etc.). Sleep issues are worse when my 7 yo son's motor tics are very bad. I must say that even now, while his motor tics are pretty mild and he no longer has obvious sleep issues, he complains of being tired and looks tired.

 

We also have used Melatonin (2 mg) and have had some success. You can find it in capsule or liquid form. Another thing that helps my son relax are epsom salt baths. We put a half a cup in the tub with very warm water and it helps relax him. Some people use more espom salts in the bath but if we use more my son's skin gets very itchy.

 

 

HTH and hang in there!

 

Best, Sarah

Link to post
Share on other sites

i really have no good info on this, so i shouldn't even be posting it. . . but, i will and if you like, you can see if you can find any validity for it.

 

i was recently doing some reading about lyme and there seems to be a theory that the insomnia of lyme is related to herpes virus. valtrex was suggested as a trial. i think someone (suzan - ?) uses valtrex, correct? maybe there is a strep-herpes relationship too. i've wondered b/c my son had a horrible mouth rash with 1st episode that i wonder if was herpes related. also there is some speculation about chicken pox vacc and pandas.

 

again, i have nothing to back up anything and no experience with this - but just thought i'd throw it out there as something to investigate.

Link to post
Share on other sites

We, too, had lots of trouble getting our DS12 to sleep at a decent hour, and then he would wake up repeatedly throughout the night (it appeared, to do rituals), and then be exhausted still in the morning.

 

Like Dad said, the abx seems to have helped tremendously with that! Now, on school days, it's lights out by 9:30, and he's normally snoring before 10, and we wake him up at 6:45 for school. He still tends to get up once during the night to go pee, but he doesn't seem to have trouble falling asleep again anymore as he did before the abx. And on weekends, when he can turn in a little later (between 10:30 and 11), he doesn't tend to get up during the night at all . . . sleeps right through until 8:30 or 9 in the morning!

 

We do, however, give him Melatonin every night: a 2 mg capsule. I've started taking it myself, and I do think it helps without being the hammer other sleep aids can be.

 

Several times in the past, too, folks have recommended Valerian Root for a sleep aid; apparently, Melatonin can help one fall asleep, but Valerian Root helps them stay asleep? I purchased some but have found we haven't needed it . . . yet. Might be worth a try in your case, though.

Link to post
Share on other sites

Momtocole-

 

We have had lots of sleeping issues- although not quite as bad as you describe. I really never found that anything helped.

 

However, after my dd had pex, I wanted to break the no sleep cycle, and get her some rest. I did benadryl for 4 nights in a row. I am wondering have you tried benadryl? Maybe if you tried it for 4 or 5 days, you could try to break the pattern of not getting to sleep.

 

Also- I am totally for letting them sleep in- don't feel guilty- his health comes first, and if you can logistically deal with it, I would let him be late (or take off) school for a month if need be (assuming he is in school).

Link to post
Share on other sites

Do you give your son any B vitamins?

 

Especially B6 in the form of P5P...without that your body cannot convert nutrients into neeeded components...amino acids like Tryptophan will not convert into serotonin---and then melatonin if you are deficient in it.

 

I hope this info helps.

 

~Karen

Link to post
Share on other sites
One of the most difficult things that my son is going through is issues with sleep.

 

Prior to IVIG (30 days ago) he was having trouble settling down to go to sleep, but he would get to bed at 10:00 or 11:00 vs. 8:00 or 9:00, so I went with it.

 

Since having the IVIG he is literally up the whole night. He can't go to sleep until about 4:00 a.m. Because he is so exhausted I don't want to wake him up the next morning.

 

I know this seems completely crazy, but I am just letting this happen because of his healing process.

 

His OCD symptoms are so much less than they were. I really am able to P U S H him gently through some of the OCD rituals that continue to bombard him.

 

I have tried so many things to help him sleep, Tryptophan, Tylenol PM, Advil PM, Ativan, Calcium/Magnesium.

 

What concerns me is that even on the mornings that I wake up early (normal wake up time for other kids), he still cannot get to sleep at a decent hour.

 

Any suggestions would be appreciated so much!

 

Thanks,

 

We have sleep issues, too, when in an exacerbation. My ds16 takes Melatoning 5mg and a couple of epsom salts baths per week. Interestingly, the deeper into a backslide he is, the less epsom salt (mag sulfate) he can tolerate in the bath without becoming itchy (like, crazy itchy). Start low on the epsom salts if you decide to try that. At about 9p, my whole house shifts into night time mode. We don't use flourescent lighting at all but most table lamps get turned down or off. I burn a little lavender in an oil burner, too. When he goes to bed, I put a calming classical cd on in the living room which he can hardly hear. He knows I'm still puttering around the house or sitting in my bed reading and the house remains quiet, all of which help him relax into sleep which seems hard to find at night for these kids. This is one of our healthy rituals that continue on most nights even when PANDAS isn't a daily part of our life.

 

Best wishes,

Gat's mom.

Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
×
×
  • Create New...