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One PANDAS symptom that never goes away


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My daughter is almost 14 and started her PANDAS "journey" the month after she turned 5. We rate her symptoms on a scale from 1-10, with 10 being the worst. There have been times in the past 9 years that she has been a 10, but thankfully not very often and not since she has been on daily antibiotics. Her very worst episode was when she was not on any antibiotics and got strep. She has also been a 1, but mostly hovers around a 3. If she rates herself as a 2 or 3 I am happy and so is she. She often jumps up to a 5, but it usually correlates with strep exposure, especially when it has been a family member with strep in the house, and responds to an increased dose of Zithromax. I will bump her up for 5-7 days and it usually works.

 

My question is, even when she is a 1 or 2 or 3, there is one symptom that has never gone away. She is afraid to sleep alone. For the past 3 years it has been consisitent. She is able, however, to spend the night at a friend's house with NO problem whatsoever. I am wondering if part of this is that it has just become a habit. Does anyone have any thoughts?

 

TIA.

Colleen

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We have had similar issues. It is amazing that my son can sleep at other people's houses and go to sleep away camp and be fine, but have trouble sleeping alone. We did see improvement in this around age 11 when we did CBT while he was in remission. We had to take it slow - sleep with lights on and Mom doing work at his desk... sleep with lights on and Mom in the hall doing work.. sleep with lights on and Mom across the hall... sleep with Hall lights on..etc... you get the picture.

 

Have you done CBT or other approaches that folks talk about?

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We have had similar issues. It is amazing that my son can sleep at other people's houses and go to sleep away camp and be fine, but have trouble sleeping alone. We did see improvement in this around age 11 when we did CBT while he was in remission. We had to take it slow - sleep with lights on and Mom doing work at his desk... sleep with lights on and Mom in the hall doing work.. sleep with lights on and Mom across the hall... sleep with Hall lights on..etc... you get the picture.

 

Have you done CBT or other approaches that folks talk about?

 

I don't have to deal with this, but at sleep overs your child is not alone...there are other kids in the room....

sometimes i wonder if we are expecting too much of all kids in general....having your own room is a luxury of 21st century.....

in many cultures everyone sleeps in the same room....

 

that being said....these orignal symptoms do turn into hapbits....so therapry and slow w/draw may be the solution!!!!

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We have had similar issues. It is amazing that my son can sleep at other people's houses and go to sleep away camp and be fine, but have trouble sleeping alone. We did see improvement in this around age 11 when we did CBT while he was in remission. We had to take it slow - sleep with lights on and Mom doing work at his desk... sleep with lights on and Mom in the hall doing work.. sleep with lights on and Mom across the hall... sleep with Hall lights on..etc... you get the picture.

 

Have you done CBT or other approaches that folks talk about?

 

My 15 yr old son can not sleep alone. we have tried and tried but no luck. For awhile he would sleep with his much younger brother but after his last strep he only wants to sleep with Mom. He is on an out of town trip with his Lacrosse team and had to sleep in a hotel room with 4 other boys. (Dad went on the trip but parents can not sleep with kids) My husband just called and said he did ok but did call him a few times and wanted to go to his Dads room but did not want the other kids to tease him. If your kids can sleep away from home without you consider yourself very very lucky.

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I don't feel this is a 'symptom' of pandas or anything else. my son is 11 and is the same way. I think he is just used to hving company, because we let him stay with us for so many years. I should hve nipped it a long time ago, but I didn't mind when he was little, I liked it.... he likes me to lay with hm until he falls asleep and then if he wakes up during the night or wee hours, he shows up.....he uses the excuse that he loves me and likes company.. don't know if he's afraid, or just used to it. p.s. I slept in between my parents til I was about 10 as well.

 

at 14 tho, will she stay in her room if you insist? what are her reasons? lights on?

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My daughter is almost 14 and started her PANDAS "journey" the month after she turned 5. We rate her symptoms on a scale from 1-10, with 10 being the worst. There have been times in the past 9 years that she has been a 10, but thankfully not very often and not since she has been on daily antibiotics. Her very worst episode was when she was not on any antibiotics and got strep. She has also been a 1, but mostly hovers around a 3. If she rates herself as a 2 or 3 I am happy and so is she. She often jumps up to a 5, but it usually correlates with strep exposure, especially when it has been a family member with strep in the house, and responds to an increased dose of Zithromax. I will bump her up for 5-7 days and it usually works.

 

My question is, even when she is a 1 or 2 or 3, there is one symptom that has never gone away. She is afraid to sleep alone. For the past 3 years it has been consisitent. She is able, however, to spend the night at a friend's house with NO problem whatsoever. I am wondering if part of this is that it has just become a habit. Does anyone have any thoughts?

 

TIA.

Colleen

 

It is amazing how many things that are issues with my son- are issues with other PANDAS kids. This is one I actually have success with that I can contribute too!!

It took me years to get my son to sleep alone- I co-slept with him for years- prior to my divocre my ex and I switched off so we could get alternating nights of sleep. It was not until I got divorced and remarried that we started having him sleep on his own- being a newlywed- created some different sleeping needs to me :).

What worked for us:

He has a REALLY heavy comforter that he has to have and it surrounds him like a cocoon (that I think works like a weighted blanket now that I am learning about sensory issues- thanks Kimballot!!). He also has very specific cotton soft blankets and we bought him high thread count sheets- because he likes the softness.

I had to snuggle him to sleep for years- then would get woken up up to 5 times a night and would get him back to bed- I was exhausted but determined to get him to sleep alone. My new husband started putting him back to sleep in the middle of the night- thinking if he did not his Mommy fix it might reduce the frequency- I have to admit it did help.

Regarding the snuggling to sleep- I probably did this for a year- then We started using a timer- I will snuggle you for 15 minutes-very often he fell asleep but he knew I was going to leave did that for a couple months- then we gradually reduced it. The first few weeks of leaving while he was awake was REALLY REALLY hard. It was brutal in the beginning but we stuck to it. We reduced the time slowly.

Now I read with him (he reads his book and I read mine at the same time) snuggle him a couple minutes with the lights off- generally I tell him how wonderful he is, how lucky I am to be his Mom and other really gushy Mommy stuff and then I leave, when he is exacerbated or out of sorts he will sometimes ask for more time- I give him 2 more minutes and then I leave- with him awake!

He does have to have very specific things to sleep with (Kimballot they are all certain soft textures that make him feel good- one is a lovie he has had since 6 weeks old- he rubs it aas he goes to sleep- luckily I bought 4 of them so we have many- he has one at his Dad's house and 2 at mine- he sleeps with both of them at my house but can be OK with 1, a pillow pet, a T-shirt pillow he made, a Large fluffy soft stuffed dog and 2 soft pillows that really end up surrounding him). I can honestly say this process took a couple of years and a very willing partner because I would have been too exhausted to carry it out alone!! I know he still crawls in bed with my ex-husband at his house and since I can't control that I don't. But at my house we have broken the cycle!

 

The final part to stop most of the night wakings was we finally did a sleep study b/c of the enuresis and night wakings in August 2009- sure enough- sleep apnea. He was waking up or stopping breathing every 5 minutes. Once we healed from the T&A over Thanksgiving 2009- he very rarely wakes me up at night- enuresis is better too- but still has it when I now know an exacerbation is coming or in full force. We were in pull ups up until about 4 months ago. Now I want to know when he has night wetting.

Prior to the T&A we would still get woken up a couple of times a week. Now I think he has learned how to self sooth most of the time. I probably get woken up once a month- or when in exacerbation this last time I was woken up a couple times because " he saw a spider in his bed"- I went up stairs pulled out the trundle- set up him to sleep there and tucked him in- deep hugs, lots of loving words, some cuddling and then I left. The next time he "saw a spider" he pulled out the trundle by himself and did not WAKE ME UP!!!!

Hope this helps!!

Brandy

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Glad to see we're not the only ones "switching off" sleeping with our son. Honestly, a lot of it is for self preservation. We have good chance with convincing and reassurance that he will stay in his own bed, but often that results in multiple nocturnal trips into his room for me during the night. I can handle a few nights of that and sometimes end up in his twin bed with him for a while. But then, I just get too too tired and I just take his bed and DH sleeps with him in ours. On weekends, holidays, vacations... whenever alarm clocks aren't a factor, we switch off nights. I will readily admit, it is MUCH easier to reach over without even opening my eyes and pat him on the back and reassure him than it is to get up, walk down the hall, wait until he is calm and go back to my bed.

 

We did try making a "bed" for him on the floor in our room that he could go into if he needed. He was having none of that. If he comes into our room, he's in our bed. But I have heard that method has been helpful to others.

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My son has one that doesn't go away either, and it involves me and my husband, but not other people. He can't stand to see or hear us swallow anything. So - you can't sleep, and I can't eat! Or swallow my own siliva without risking setting him off. I think I have the OCD now...whenever he walks in the room I feel the need to swallow!

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My daughter is almost 14 and started her PANDAS "journey" the month after she turned 5. We rate her symptoms on a scale from 1-10, with 10 being the worst. There have been times in the past 9 years that she has been a 10, but thankfully not very often and not since she has been on daily antibiotics. Her very worst episode was when she was not on any antibiotics and got strep. She has also been a 1, but mostly hovers around a 3. If she rates herself as a 2 or 3 I am happy and so is she. She often jumps up to a 5, but it usually correlates with strep exposure, especially when it has been a family member with strep in the house, and responds to an increased dose of Zithromax. I will bump her up for 5-7 days and it usually works.

 

My question is, even when she is a 1 or 2 or 3, there is one symptom that has never gone away. She is afraid to sleep alone. For the past 3 years it has been consisitent. She is able, however, to spend the night at a friend's house with NO problem whatsoever. I am wondering if part of this is that it has just become a habit. Does anyone have any thoughts?

 

TIA.

Colleen

 

I believe this is a symptom of pandas as I see it wax and wane in my dd8. She too can sleep over at other's houses (at times) but has a lot of trouble sleeping in her own room at home. I have a mattress on the floor of my room so she can come and go as she needs to. Right now, in a difficult time, she starts out there. At other times, she will try to start in her own room. We have not even tried in a while. I hope she can gain the confidence to sleep alone so it worries me that you are still having this trouble, but I will love and support her and hope for the best.

 

I am glad to hear that she can rate how she is doing and that the abx are mostly working.

 

Susan

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yep,our dd still sleeps with me every night,

i wont even try for a while because it was a trigger

point for her (to much stress) this happend before ivig

so I dont want to chance it yet,I am glad I am not alone

with this.

Tracie

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Tonight is worse than usual, she is crying, close to hysterical, that she is scared and can't sleep. I feel like she felt me writing about her sleep issues and that stirred her up (like when she was a baby I could not think about her when she was asleep or she would wake up). She is on the floor next to my bed with a blanket and a pillow. Too scared to sleep on her mattress 5 feet away.

 

Susan

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Mine ds still sleeps with me. I almost had him back to his bed by himself after pex. But between, my increasing insomnia (good old post traumatic stress stuff), and his re-exposure to strep he is back to sleeping in my bed. Once he started getting better, we moved from my bed to his beds, and there were a few nights where he was fine by himself. Once he got re-exposed, and I was so overtired from all this extra internal energy keeping me awake (all that extra energy used before improvement) I just moved us both back to my bed so maybe I could sleep better. My poor husband is never quite sure where he is sleeping, but I think he has finally accepted it. He just carries his memory foam pillow wherever he ends up! And my son still does sleepover's fine...thank goodness!! Those sleepover's are/were much appreciated...especially when he was so bad!

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My son is 11 now, and has never been able to fall asleep alone, but thankfully now he can stay asleep after one of us leaves his bed after he falls asleep. This has been one of his "residual" issues as well. He is back on treatment since we think he was never entirely cleared of infection. He is able to go to sleep at a friends house, but they are in the same room. Here at home, he yells for one of us to come in or he can't go to sleep. This has been one of the most disrupting issues for obvious reasons! We are hoping that now that he is on several new antibiotics, and will be now for long term, this will resolve.

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All I will say is my son USED to be able to sleep by himself.

When PANDAS really flared up, this stopped.

He says he has less nightmares now and says maybe if he had a dog, he would sleep with it in his bed.

 

Or he's being manipulative. Anyway, The point is, inability to sleep alone IS a PANDAS related condition. If PANDAS flares up, no way will that kid sleep by him or herself. But my son is an example of someone who USED to.

 

Michael

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I agree with Michael.

 

My daughter slept alone from about age 10 weeks to age 9 years- never any problem.

 

When pandas initially hit, she would sleep in her bed, but would not let herself sleep until we came upstairs for the night. We didn't really understand what was going on at the time. When her pandas hit a crisis point, she ended up in bed with me (poor dh is in 3rd floor bedroom now).

 

Since pex- all symptoms have been improving. This IS a tough one, but we are making progress. We are slowly working her back to bed, with no pressure and no panic. Baby steps. We are now to the point, where she will go to sleep by herself in my bed- I come up to bed after she is asleep. I do give her melatonin, which helps her get relaxed and sleepy.

 

This is definately a pandas thing for my kids. As they get healthy, the panic around it goes away- but it still seems to take a lot of work to get rid of it.

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