Posted 28 August 2013 - 12:32 PM
I tried devising a token-reward system where he can earn a token for falling asleep by himself (also a problem), one for staying in bed all night, and one for staying in bed until 7. His rewards are watching movies, ice cream, video games, etc--things which I would assume are highly motivating for him. Not working. He even says I know what you're trying to do and I'm not going to do it! I want to be sensitive to the fact he may have intense fear, but this pattern isn't good for him or the rest of our family. I want to encourage him so he will develop confidence that he's safe in his bed. Is this the wrong time for a behavior-mod plan? Any tips or advice? When the flare is over do children tend to naturally move back to age appropriate behaviors?
Posted 28 August 2013 - 01:15 PM
Well, just my opinion- you need to do whatever it takes for you to get some sleep or you're going to end up no good to anyone. If you feel like you must work on this right now- I'd just pick one of those 3 goals to focus on. While it may automatically resolve w/ healing, if it doesn't, he will at least be in a better place to work on it. I have not found (and the professionals haven't either) any motivator that is stonger than the anxiety when my child is in a flare. When he is in a place where he is able to work on it, I think it is important for him to feel like he has the power to overcome the problem, with your collaboration- he needs to get in touch with his internal motivators.
Have you tried using an "amulet"? Sometimes our kids get magic thoughts and its possible to use this- some toy or blanket or outfit that will "keep him safe". Then you'd have to work on weaning him off of it later- and you run the risk of him generalizing it to other, innappropriate environments.
Just a few ideas....
-Peggy, mom to 19yo PANDAS daughter w/ onset probably in infancy. Manifests w/ severe autism symptoms and currently nonverbal.
Posted 28 August 2013 - 03:05 PM
just to second what peglem said, sleep should improve with overall improvement. and for that you need your sleep.
it is not clear what you have done, but it seems that serotonin/dopamine regulation does not work.
from his/her rewards, I see you are giving plenty of sugar. that might be one of the issues as well.
I think I said this already in reponse to your post: there are many things you need to do and most of them require drastic changes. abx and or IVIG is the usual rout but you need to complement that with dietary changes, lifestyle changes, supplements concerning methylation and so on.
this is a long and comprehensive war. if you do it piece-meal, it's only going to last longer -- well, that's our experience.
DD9 (b. 2004), dx 2012 PANDAS and RLS. on abx. doing much better -- Lyme, 05/13
ds5 (b. 2008), PANS?, on abx. doing somewhat better, steroid taper much better, celiac, dairy sensitivity -- Lyme, 05/13
both kids with C667T and A1289C mutations, taking supplements
Posted 28 August 2013 - 04:04 PM
I am not a good one to be giving advice - my kids still have sleep issues and they're 8 and 10. I always chose sleep over principal. So DH and I aften gave in and slept with the kids instead of being woken up repeatedly. If I fall asleep for more than 15 min and then get woken up, I'm up for hours. So I personally couldn't fight this battle while also being expected to be compassiontate during the daylight hours. The good news is that as the 10 yr old has gotten older, he has learned to sleep alone pretty easily now and only rarely will come in an hour after I thought he was asleep and tell me intrusive thoughts are keeping him awake. The 8 yr old is also getting better, but not quite as successful.
So sleeping alone is in the same category for me as thumb sucking and pullups. I doubt any kid will walk down the aisle for his/her wedding still sucking a thumb or wearing a pullup or sleeping with a parent. So when PANS was on the front burner, where everyone slept was a whole lot less important than the fact that we all got enough sleep to be kind to one another all the other hours of the day.
- peglem, eamom, MomWithOCDSon and 1 other like this
Posted 28 August 2013 - 04:18 PM
If having him in your bed is a problem, can you set up a little sleeping bag (or futon or mat) in your bedroom where he can crash if he doesn't want to be alone in his room?...and tokens for "not waking you up" if does decide he needs to sleep in your room?
Posted 28 August 2013 - 04:39 PM
Posted 28 August 2013 - 06:48 PM
Posted 28 August 2013 - 09:29 PM
DS11, dx 2010 PANDAS, 1.5yrs after first symptoms
IVIG #1- May 2011, IVIG #2- Nov 2012
Ehrlichia, anaplasma dx Mar 2013
Lyme dx 2014, bartonella 2015
Posted 29 August 2013 - 10:21 AM
I HIGHLY recommend this book:
We've had the pleasure of working directly with this doctor/author and her workbook series is all around AMAZING! I highly recommend this book on sleep issues (and many of the others in the series).
I can't speak for everyone, but in our particular situation, my son's OCD behaviors and sleep issues started with lyme. After about 6 months of treatment (with improvement), I started to wonder if many of our problems were becoming more habit than a true medical issue. We worked though this workbook together and it worked...quickly! Prior to this I had been laying with him every night until he fell asleep and then I would return to his room where I slept every night for almost 3 months. I did this so my family could sleep and we could make it through the school year. I understand that desperate feeling!
Here we are 1 year later and he still goes to bed on his own and sleeps through the night. Magic!
Posted 29 August 2013 - 11:21 AM
My daughter had a rough time with sleep before treatment. One of the first signs treatment was working was that her appetite returned and she slept through the night. After the tonsillectomy, she has regressed some and we are having to lay with her at bedtime and, for a couple of nights, sleep on her floor. There isnt much to help was instead for myself: giving in and sleeping on her floor allowed me to get more sleep and be a better parent. Thats essential for dealing with the flares!
As for habits etc that helped her: red night lights, lots of stuffed animals, bath and stories before bed. I agree that sugar and chocolate seem to make things worse.
As for meds, tried valerian and while that appeared to help the nights, made the days worse with more rage and anger. Melatonin got her to bed earlier but also got her up earlier too.
Daughter born 2/2009. GERD 3/2009-5/2009. Multiple croup and ear infections. Flu 2/2011. Mono 11/2011. Leg weakness 3/2012. GI Staph Aureus infection 6/2012. Allergy to wheat and almonds 10/2012. 1st PANDAS major flare 12/2012. ABX 4/2012. T/A 7/2013. IVIG 12/2014. Hyperactivity, OCD, anxiety, potty talk. Major flare improved until likely strep exposure. 2nd IVIG given 8/2015 without improvement. Igenex negative to Lymes&co. Tested negative to HHV6. Igg subclass low in range.
Son born 8/2007. No health issues. Flu 2/2011. Mono 11/2011. PANDAS flares started around 2011/2012, gradually increasing in severity. ABX 3/2014. T/A 4/2014. IVIG 12/2014. Hyperactivity, anxiety, OCD, tics, potty talk/copralalia, aggression. Igenex negative to Lymes&co. Tested negative to HHV6. Igg subclass low in range.
I also have two sisters and each has a likely PANDAS kids, although none of my generation or my parents show OCD. I am attempting to determine if there is some genetic root of strep susceptibility.
Posted 29 August 2013 - 06:23 PM
My advice is, until your child is on remission find a way to compromise where he feels safe and secure and you get some sleep. See what his ideas are. Perhaps if he feels in control of the solution he will be more willing to participate. Also, what does he get to trade the tokens for? If it were something really motivating that would help too.
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