ODD? Sleep problems?

[Phasmid]

We are six years into this (at least) and only now solving the puzzle. Our son is pretty well right now (in terms of tics) but has behaviors that have always been unusually difficult. How many of you deal with ODD? Sleep probs like not being able to sleep by himself, fear in his room at night, constantly waking and callling out. This has been life long and he is 11!!! We have a phone consult but i know we'll be in Dr. K's office in person. Thanks for sharing info regarding the above.

[kimballot]

We are six years into this (at least) and only now solving the puzzle. Our son is pretty well right now (in terms of tics) but has behaviors that have always been unusually difficult. How many of you deal with ODD? Sleep probs like not being able to sleep by himself, fear in his room at night, constantly waking and callling out. This has been life long and he is 11!!! We have a phone consult but i know we'll be in Dr. K's office in person. Thanks for sharing info regarding the above.

 

Sounds like you are in the right place. I am new to the website and a PANDAS diagnosis, but not new to PANDAS. We have found some relief with cognitive behavioral therapy, behavior modification, did martial arts for self discipline, and we use melatonin at night to help my son to feel a little sleepy and to help him stay asleep through the night. He still has an increase in symptoms with PANDAS, but he is not up all night in fear with his light on. When he gets a good night sleep and eats well, he is much less defiant during the day. Keep reading posts here. You will learn a great deal. I learn something new everyday.

Edited March 20, 2010 by kimballot

[Worried_Dad]

ODD and sleep disruption are classic PANDAS symptoms. We've experienced both big-time with our son. Both have improved dramatically with effective PANDAS treatment (IVIG, high-dose abx).

 

Hang in there!

[thereishope]

We had ODD. As for sleep problems, at a time, I had a very hard time getting him ready for bed. Took him forever to get in the room to change his clothes, the actual changing of clothes...it took forever. Then we had the OCD ritual of what to say as a "goodnight", how we had to hug, how far the door had to be open. Then usually he had to make at least 2 to 3 addditional trips to the bathroom before he finally fell asleep. We also could not at all change the routine. No matter how late we got home, he HAD to have a snack, HAD to watch a show....

 

Luckily, we no longer have those problems. The "goodnight ritual" was a hard one. That one we had to work on and didn't go away on his own. Even now, I make sure we change up our goodnight every so often just to make sure no OCD has a chance to creep in.

[NancyD]

I NEVER thought I would get my daughter out of my bed, but I did (finally) at the age of 13. And I tried EVERYTHING. Even tried to bribe her with a cell phone, which she desperately wanted. I used to love going on business trips so I could have the bed to myself. Then one day (about 3 months after starting IVIG) she informed me that it was too embarrassing to be sleeping with her mom. 'Course, by then, all bets were off with the cell phone (limited time offer...phew!). Never would have happened without IVIG. Same thing with the violent rages and oppositional behavior. All part of the PANDAS. Dr. K is definitely the right way to go. Good luck!

 

Nancy

[Phasmid]

Interesting. Thanks. I wish I had realized that the night time issues were part of this much sooner.

 

Mary

[Phasmid]

Thank you for replying. This is helpful.

 

Mary

 

 

 

 

ODD and sleep disruption are classic PANDAS symptoms. We've experienced both big-time with our son. Both have improved dramatically with effective PANDAS treatment (IVIG, high-dose abx).

 

Hang in there!

[Suzan]

My dd8 has ODD symptoms and both my girls have had sleep issues throughout their lives, now we know related to pandas.

 

Right now, we have a nice routine and they have improved enough to sleep well. We use melatonin to relax and go to sleep. I gave up on how I thought things "should" be related to sleep and just did whatever we needed to do to get some sleep. This included sleeping in their room, they sleep in my room, and just about any combination you can figure.

 

I just read The Explosive Child which, if you have not read it yet, might be of help to you regarding the ODD behavior.

 

HUGS!

 

Susan

[Phasmid]

Thanks. Is melatonin effective, really? I may try. But I don't expect it will work, since he is already dead tired, nearly hallucinating due to being so tired, yet he will lay there in his bed and yell and scream in a panicked voice until we have to go in with him. Been like this since age 6 at least. I remember it actually at age 3, however it was still age appropriate then. So i kept saying, ok, when you're 4 you'll be able to be by yourself in here. Then, ok, maybe 5, then maybe 6... maybe 8? Maybe 9????? I recall his ped. telling me to lock him in his room (age 5) and let him scream. Psych. said all due to early medical trauma (eye surgery at 3), ped. said bad parenting, books said marriage trouble between parents causes this. Any chance???

[NancyD]

Melatonin is a lifesaver! We've been using it for many years. I even take it if I have trouble falling asleep. My daughter wanted to stop taking it recently to see what happened and the other night I discovered she was chatting on Facebook until midnight. Now the internet is turned off at 8pm and we might just have to go back to Melatonin...

 

Nancy

[Suzan]

Thanks. Is melatonin effective, really? I may try. But I don't expect it will work, since he is already dead tired, nearly hallucinating due to being so tired, yet he will lay there in his bed and yell and scream in a panicked voice until we have to go in with him. Been like this since age 6 at least. I remember it actually at age 3, however it was still age appropriate then. So i kept saying, ok, when you're 4 you'll be able to be by yourself in here. Then, ok, maybe 5, then maybe 6... maybe 8? Maybe 9????? I recall his ped. telling me to lock him in his room (age 5) and let him scream. Psych. said all due to early medical trauma (eye surgery at 3), ped. said bad parenting, books said marriage trouble between parents causes this. Any chance???

 

Melatonin is a life saver for us too. I literally have told people that it did save my life. I think it is worth a try. We use 2.5 mg sublingual tablets. I give it about 20 minutes before I hope they are asleep. We get all cozy on the couch and watch a boring TV show and soon they are asleep. After they are good and asleep, I walk them upstairs. Not my ideal way but it works for us. Someday, I will work on "proper" bedtime but that will probably come after they are doing better. I don't fight them with their separation anxiety or fears right now, although we did have many years of that before I understood what was going on.

 

Susan

[Phasmid]

So you both think this is not age appropriate, but related to the disorder? Diagnosed already with PANDAS or PITAND?

 

Thanks. Also, my son was on an SSRI and actually did better on than off. He was more even keeled in mood, more focused in school, better grades (not perfect), more tolerant of friends. Should I try again? His ped. (not knowing he's PANDAS/PITAND) suggested that I put him back on. Anyone have theirs on SSRI? I am aware of the warnings, aside from additional complications with PANDAS, but if it helps???????

[peglem]

Thanks. Is melatonin effective, really? I may try. But I don't expect it will work, since he is already dead tired, nearly hallucinating due to being so tired, yet he will lay there in his bed and yell and scream in a panicked voice until we have to go in with him. Been like this since age 6 at least. I remember it actually at age 3, however it was still age appropriate then. So i kept saying, ok, when you're 4 you'll be able to be by yourself in here. Then, ok, maybe 5, then maybe 6... maybe 8? Maybe 9????? I recall his ped. telling me to lock him in his room (age 5) and let him scream. Psych. said all due to early medical trauma (eye surgery at 3), ped. said bad parenting, books said marriage trouble between parents causes this. Any chance???

 

When my child was like that, the melatonin did not work very well for her- but we couldn't get her to just lay there (screaming or otherwise) anyway. But, I think if you give the melatonin before the yelling and screaming begin and then stay with him, he's likely to fall asleep w/in the hour. My daughter will fall asleep exactly 1/2 hour after melatonin and when in sleep disturbing exacerbations, will awaken exactly 4 hours after getting melatonin. She's not in exacerbation right now, and does stay asleep all night usually now. We also give valerian root @ an hour before bedtime and that really has helped her to relax. It is worth a try!!

[Phasmid]

Ok, thanks. I will try it.

 

 

 

 

 

 

 

When my child was like that, the melatonin did not work very well for her- but we couldn't get her to just lay there (screaming or otherwise) anyway. But, I think if you give the melatonin before the yelling and screaming begin and then stay with him, he's likely to fall asleep w/in the hour. My daughter will fall asleep exactly 1/2 hour after melatonin and when in sleep disturbing exacerbations, will awaken exactly 4 hours after getting melatonin. She's not in exacerbation right now, and does stay asleep all night usually now. We also give valerian root @ an hour before bedtime and that really has helped her to relax. It is worth a try!!

[dut]

Hi - my dd's 2nd bad episode was the worst for me to deal with 'cos she was really oppositional and combative (not physically although there was some physical posturing like drunks do.. bumping etc) and her sleep was terrible. We would be awake maybe 2-3 hours every night, having spent forever trying to get to sleep in the first place.

 

Unfortunately, we only recently discovered melatonin but it works a dream to get my 2 kids off to sleep. They get it 1/2 hour before bed and go out like lights. It won't keep my terrible sleeper son asleep (he still wakes maybe 7 or more times a night) but it does buy me 3, sometimes 4 hours during the evening which I didn't get before.

 

Many people use valerian or GABA but it had a paradoxical effect on our ds and made his sleep and behaviour worse....

 

(oh yeh, we use the 1mg melatonin lozenges for both our 35lb ds and 65lb dd).