One PANDAS symptom that never goes away

[Phasmid]

Dr. Kovacevic has this listed as a PANDAS main feature in his criteria: "Inability to sleep alone in own room." It is anxiety related.

[colleenrn]

Thank you so much for everyones replies! So, I guess we are not alone. My daughter slept with us until she was about 3 (our choice- had nothing to do with PANDAS), but starting around 3 she slept alone without any difficulties, even through her PANDAS, until she turned 11 and had untreated strep (did not know at the time) and the onset of intrusive thoughts for the first time. It has been ever since then that she does not want to sleep alone. She is fine spending the night at friend's houses- no problem, but when she stays at my mom's house, she wants to sleep in my mom's room.

 

The intrusive thoughts were the most terrible times and I was so grateful when they resolved that I did not care where she slept. I think part of it has just become a habit and that CBT could help, we just have not tried it. It is not a huge deal, but she will be 14 soon and I have to imagine that it does not feel good to be a teenager and not want to sleep alone, so it is for that reason that i want to try to see if we can help her be able to sleep alone.

Colleen

[dcmom]

colleen-

 

I have the same thoughts about my dd age 9.5 who is sleeping with me. I do think it is important for their self esteem, to conquer this- with patient, loving help.

 

I don't know if this makes sense- but for my dd- it seems with many of her issues she is afraid of the fear.

 

So, in other words- she doesn't want to try doing certain things, out of fear that the feeling of intense fear and panic will occur again. Most of the time, by the time she tries the avoided action- she is fine. This is because she is "healthy" now.

 

Good luck!

[bgbarnes]

If my ds started having really bad symptoms that required me to sleep with him again- I would do it- especially now that I know about PANDAS. I just know for us it was a REALLY long process to get him to sleep alone- years and it took more than one parent willing to do it or the exhaustion would be too much. If he wakes me up at night- I don't get mad ( there were times when he woke me up multiple times that I did) I just help with what ever he needs 9sometimes it is snuggling, sometimes it is just a hug or to be reminded to pee. Give him love and redirect. I think we all know what our kids need- that is why we are the ones out here searching for ways to cure our kids! Good Luck!

Brandy

[Megs_Mom]

Sleep and food were the two things that we found most important during an exacerbation. So during an exacerbation, all bets are off. I move in with her for as long as it lasts. Nowadays with abx, that is generally only a few days. However, when she was not medically treated, this was for months at a time. If a child is not yet medically treated & pretty much back to normal (say 90%), then I personally vote for doing whatever it takes to help them sleep. When she is not treated, I think she needs help more at night than any other time.

 

After her last severe exacerbation, she was still unable to sleep the entire night alone, even after pretty much all OCD was gone. She had developed a pretty serious habit/fear and was just unable to overcome it. She really wanted to get back to her own room and bed - she wanted her independence back - but just wanting it was not enough. So we put together a very slow & attainable ERP plan. I literally moved about 4 inches a night on a blow-up bed. The first night she slept with her hand on me as I was on the floor next to her bed. Then we (she moved the bed herself) slowly moved the blow-up bed further away from her. And once a week, she got a reward of getting to sleep with me. The funniest night was when we reached the top of the stairs (yes, I slept in the hallway), and she started trying to figure out how to get me to sleep on a landing. Had to put my foot down there!!! The entire plan, which she ran, took about 3 weeks to complete.

 

The other really horrid/funny thing that happened, was one night I was sleeping at the bottom of the stairs, and could not sleep about 3 am. So I am reading a book, when a small but awful little mouse comes happily down the stairs. I freaked, it freaked, and it jumped OVER me. OMG, I was so upset, I was standing there in the middle of my living room completely rattled, and not knowing what to do! I could NOT get up my courage to lay down again on the floor. The next day, I made my husband put down about 30 mouse traps.

 

The things we do for love.....

[Suzan]

The other really horrid/funny thing that happened, was one night I was sleeping at the bottom of the stairs, and could not sleep about 3 am. So I am reading a book, when a small but awful little mouse comes happily down the stairs. I freaked, it freaked, and it jumped OVER me. OMG, I was so upset, I was standing there in the middle of my living room completely rattled, and not knowing what to do! I could NOT get up my courage to lay down again on the floor. The next day, I made my husband put down about 30 mouse traps.

 

The things we do for love.....

 

OMG, it's so true. What a horrible, funny story! You do such a good job with Meg and helping her help herself! This made me think of the conversation dd8 and I had this morning after her really bad night last night. Yesterday she had reorganized her mat in my room so it was in a different direction. I think that is what set her off. She said " I guess I don't do so well after changing my bedtime routine". DUH, you think? She has not slept in her own room since we switched out her bed from her loft bed to a regular bed (at her request). So we moved her mat back to it's regular place and I got her good and asleep downstairs before moving her up tonight and so far so good. It opened some good conversation about it though. I know when she is ready, we can start moving her back to her own room. It's got to be in her own time or it won't work. We just find ways that we can all sleep well and that is the most important thing to us all.... Enough good sleep!

 

Susan

[simplygina]

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 always thought it was curious that DS could sleep at friend houses as well. But if you think about it, they aren't sleeping alone. When DS started sleeping on his own in his own room at 9 after his tonsillectomy, I was soooo happy. Since then he goes through bouts of wanting to sleep with someone. Since we won't let him sleep in our room anymore he lets his younger brother sleep with him or he calls the dog into the room to sleep with him. i do think there is a habit component to it, but when the stars aligned or whatever happened after he had his tonsils out, he just started sleeping all night without fear one night. so it is more than JUST habit at play. i know he must feel a need to not be alone pretty strongly because his brother sometimes wets the bed!