my DS7's sleeping habits these days...UGH!

[saidie10]

DS7 was doing sooooo good with his sleeping until his brother got strep two weeks ago. We put him on .5mg melatonin last year at the end of summer (coincidentally between his last two known strep infections) which allowed him to go from 4-6 hours of sleep to 10-11 hours of sleep at night which of course did have a very positive effect on him. In spring of this year, I had weaned him to .25mg of melatonin and things were going well over the last few months, but now, we are back to finding him in the living room with the tv on at 2 in the morning to in our bed tossing and turning all night long. He woke us up at midnight when he got in our bed, then 2, then 3, then 4, then I just finally got up with him at 5. He says he did not sleep at all after midnight! I don't know if that is true or not, but it sure feels like I didn't. Poor thing has dark circles under his eyes. And he is starting to talk about these damn little fairies he used to say he would see last year at night that would keep him up. I used to think nothing of that until now of course!

 

Why is it soooo hard for a doctor to just TRY antibiotics!? This just really pisses me off. NO help in Austin with Neurologist, NO help in Houston with Immunologist and Neurologist, NO help with Pedi. Going to be another month before I can get in to Infectious Disease doctor in Dallas who *may* help. Going to be making more phone calls tomorrow! Dr. K very well may be on my list!

[Mary M]

Our dd12 is currently suffering from extreme insomnia. I wish I had an answer for you. She was up for more than 32 hours straight Mother's Day week end (and when she finally fell asleep she spent more than an hour sleep walking) and has only slept from approx 5am-11am (yes, she's up all night) daily for 3-4 weeks now. She took melatonin one night and it didn't help so in her mind that is not an option. Sleep deprivation is hugely debilitating. But she's not tired at all...is there science behind the sleep issues PANDAS have?

[lfran]

If you can show your doctors the protocol flowchart that Dr. Trifiletti developed (THANK YOU, DR. T!)-- http://pandasdad.home.comcast.net/~pandasd...itand_diag2.pdf -- it may help him/her see what to do and help your doc realize that prescribing antibiotics is part of a protocol. Also, if you can establish PANDAS via the Cunningham test, that may also help. I think this flowchart is an amazing tool.

 

DS7 was doing sooooo good with his sleeping until his brother got strep two weeks ago. We put him on .5mg melatonin last year at the end of summer (coincidentally between his last two known strep infections) which allowed him to go from 4-6 hours of sleep to 10-11 hours of sleep at night which of course did have a very positive effect on him. In spring of this year, I had weaned him to .25mg of melatonin and things were going well over the last few months, but now, we are back to finding him in the living room with the tv on at 2 in the morning to in our bed tossing and turning all night long. He woke us up at midnight when he got in our bed, then 2, then 3, then 4, then I just finally got up with him at 5. He says he did not sleep at all after midnight! I don't know if that is true or not, but it sure feels like I didn't. Poor thing has dark circles under his eyes. And he is starting to talk about these damn little fairies he used to say he would see last year at night that would keep him up. I used to think nothing of that until now of course!

 

Why is it soooo hard for a doctor to just TRY antibiotics!? This just really pisses me off. NO help in Austin with Neurologist, NO help in Houston with Immunologist and Neurologist, NO help with Pedi. Going to be another month before I can get in to Infectious Disease doctor in Dallas who *may* help. Going to be making more phone calls tomorrow! Dr. K very well may be on my list!

[MomWithOCDSon]

I don't know of any sleep studies, but I do know that most of our PANDAS kids seem to have trouble with both falling asleep and staying asleep during exacerbation. Interestingly enough, my DS13 shows a marked difference in his sleep habits according to what level dose of abx he is currently taking . . . not just whether or not he's on it at all! It is quite the mystery!

 

Saidie, in your shoes, I would definitely call either Dr. T. or Dr. K. and set up a phone consult to get things moving with your child. It's hard to accept that there's no doctor in your area who will help you with even trying the abx, and you may just not have unearthed him/her yet, but I wouldn't hesitate to reach out to one of these two who have a regular phone consult practice. You and your DS need some sleep!!

[Phasmid]

DS7 was doing sooooo good with his sleeping until his brother got strep two weeks ago. We put him on .5mg melatonin last year at the end of summer (coincidentally between his last two known strep infections) which allowed him to go from 4-6 hours of sleep to 10-11 hours of sleep at night which of course did have a very positive effect on him. In spring of this year, I had weaned him to .25mg of melatonin and things were going well over the last few months, but now, we are back to finding him in the living room with the tv on at 2 in the morning to in our bed tossing and turning all night long. He woke us up at midnight when he got in our bed, then 2, then 3, then 4, then I just finally got up with him at 5. He says he did not sleep at all after midnight! I don't know if that is true or not, but it sure feels like I didn't. Poor thing has dark circles under his eyes. And he is starting to talk about these damn little fairies he used to say he would see last year at night that would keep him up. I used to think nothing of that until now of course!

 

Why is it soooo hard for a doctor to just TRY antibiotics!? This just really pisses me off. NO help in Austin with Neurologist, NO help in Houston with Immunologist and Neurologist, NO help with Pedi. Going to be another month before I can get in to Infectious Disease doctor in Dallas who *may* help. Going to be making more phone calls tomorrow! Dr. K very well may be on my list!

[Joan Pandas Mom]

We are at Dr. K's now. He mentioned to me today that so many PANDAS kids have sleep problems. He also mentioned that once the IVIG kicks in not to be suprised if my DS sleeps alot more than what he has been. Their minds and bodies get so tired from constantly fighting.

[bgbarnes]

Another piece of the puzzle- WOW!

My son has not sleep well- EVER- I slept with him for years just to get some sleep. IT was not until he was 6 1/2-7 that he slept though the night without waking me up more than he wakes me up-I think he has just figured out how to put him self back to sleep or he reads- something. When exacerbated- he wakes me up- a lot. Needless to say when my friends babies were sleeping though the night- I might have been a little jealous! Good to know it is common.....More shall be revealed!

Brandy