Possible PANS sib developing a ritual

[1tiredmama]

Hi! I have been here for a week asking lots of questions on behalf of my very disabled son whom I strongly suspect has PANS. I have not mentioned her, but my dd11 has some of the same issues, but to a much milder degree. I figure that if ds17 is dx'd and treated successfully for PANS, than I will pursue the same for her.

 

She is currently under the care of a brilliant ped neuropsychiatrist for a textbook case of Bipolar I with depression starting at age 3. Anxiety was expressed at the same time as an inability to play with or talk to friendly, same age children whom she did not know well. This anxiety is still present, hence she has no friends. In kindergarten, she became extremely anxious about wearing a winter coat--believing that it made her scrawny body look fat. This led to crying at school and hiding on the playground when forced to wear a coat. In second grade, she started with full-fledged school phobia. Screaming, crying, running. She tried to escape the building and was successful on a few occasions. She was not allowed to return to her private school the next year.

 

Since third grade, she has been in public school with an IEP. That first year saw lots of screaming, but she settled in. Mostly, she has been successful. However, this year she transitioned to middle school. Anxiety has been so bad that she is now homebound.

 

Now, I see her developing a ritual. This is new territory for me. Many of you are dealing with this kind of thing, so I thought I'd ask if you think I can stop it before it gets entrenched. She and I have this thing called "lay-lay." We've been doing it since she was tiny. Until recently, it was simply a night-time tuck-in routine, whereby I would lay with her in her bed while we discussed her day/thoughts. She would suck her thumb and and snuggle for a few minutes and then lights out. On the wkds, we might do lay-lay in the morning in my bed. I figured she would outgrow it.

 

With the re-emergence of school phobia this year, she has placed more demands on lay-lay. It HAS to happen EVERYDAY now, both morning and night. It has to be long. No one can interrupt to ask me a question. I'm not supposed to wear a bra (because she lays her head on my chest.) She grabs me with a certain look in her eyes if I try to end it too early. One day, I stormed out of the room telling her that she has placed so many rules and restrictions on lay-lay that it is no longer relaxing. Her response? An apology and this, "I'm not placing rules and restrictions on lay-lay, I'm enhancing lay-lay."

 

Is she starting with an OCD behavior? This thing takes up an hour or more a day! I try to watch the clock to keep it as short as possible--she was up to 2 hours a day. Since I am the center of this ritual, can I stop it? Right now, just shortening it to a normal tuck-in results in grabbing and a refusal to turn off the light and lay down. A reward system will be rejected, and the idea of a negative consequence seems cruel. She already interprets my watching the time as a lack of love.

 

Maybe I should have a frank talk with her and set a timer for 15 minutes.

 

Your thoughts, please.

[dcmom]

1TiredMama-

 

Let me say first, that as a parent of TWO pandas children (my only two children) I see everything through pandas-colored glasses- so take what you want from this....

 

I STRONGLY suspect your daughter has had pandas since the age of three. Bipolar, depression, anxiety, screaming, IEP, school avoidance, running away, fear of looking fat and "lay-lay" all scream of a larger problem. Most of the parents on here have seen these symptoms in their pandas kids at some point. I can tell you that during an episode my kids have depression, anxiety, tantrums, anxiety, running away, and difficulty at bed time (including wanting to sleep with me- and I know that look in the eye you speak of when you try to leave them before they are ready). To me, these symptoms do not sound mild. Your daughter is on homebound education- that is not mild. IMHO, age 11 is too old for "lay-lay", for your daughter to dictate what you wear, and how long you lay with her, and laying with her in the morning and night. I have an 11 year old also (with pandas), and I know how these things can turn from a nice comforting tradition into an obsession. I have learned (though still have to remember) to be very careful about creating/ reinforcing these types of things, and rather do nice, special things on a more random, unpredictable basis.

 

I do not know much about bipolar (hence we could have symptoms of that during exacerbation as well), but I do know that it is a relatively "new" diagnosis for children, and not everyone believes in it.

 

I would strongly suggest getting both of your kids to a pandas specialist (and by that I mean one of maybe 4 doctors in the country- where do you live?). Along with that, I would find a psychologist qualified and experienced in CBT and exposure therapy for ocd. I have a suggestion for an intense outpatient program that we attended, pm me if you are interested.

 

The good news is- that if this is mostly caused by pandas- you can expect improvement with a combination of medical treatment and therapy. It will not be easy, but they will be able to get better. I would suggest initiating medical treatment (if you can) first, and then following up with therapy to break these patterns- but yes- I would crack down on "lay-lay" by scaling it back in time, and "enhancements" (that was kinda cute).

 

Good luck.

[MomWithOCDSon]

Hi!

 

It does sound as though she's turned this "lay-lay" into a ritual, and yes, sort of a hallmark of a ritualistic or obsessive behavior is that it will continue to grow and expand ("enhance itself") until it consumes more and more of a person's time, thoughts and energy. So, whatever the organic cause of the behavior, it seems as though this is a behavior born of anxiety.

 

I would probably try doing all of the things you've indicated. I would have a frank discussion with her about how, when you dedicate 2 hours each day to "lay-lay," there are all sorts of other activities/tasks that have to go undone and/or unenjoyed; pick a couple of things that she really likes (reading a book, watching a particular TV show, maybe playing a board or card game with you). Offer to exchange your time and attention with one of these alternate activities for the extended "lay-lay" time.

 

I suspect she's also old enough (and bright enough, based on her "enhanced" argument ) to grasp the concept that "quantity" and "quality" are not the same thing. You could ask her to suggest some ideas for "enhancing" the quality of a shorter, simpler "lay-lay" rather than expanding it time-wise and/or dictating the terms upon which you can participate (bra-less, etc.). Maybe you could sing a song together, and when the song is done, so is the lay-lay, for example.

 

And, if frank talks and attempts to reason fail then, yes, I would set a timer and stick to it as an impartial Judge of Time. The thing about rituals born of anxiety is that, as you've probably already suspected, they are never satisfied. As a result, the conditions, restrictions and demands on your time will continue to expand and extend, like kudzu creeping over your lawn unabated. It can happen slowly and almost imperceptable at first, but then one day you turn around and realize -- as you already have -- that you're giving up 2 hours a day to this single ritual and getting very little in return!

 

Finally, as a mom of a kid who was diagnosed with his own mental disorder at 6 (in our case, obsessive compulsive disorder), only to finally identify an infectious trigger at the age of 12 and experience great and lasting (knock on wood) improvements with medical intervention alongside some mental health interventions, I'll join DCMom in encouraging you to investigate a potential underlying medical genesis for your daughter's condition. After years of having been told my son "just" had "regular OCD," and having even made peace with that diagnosis for many years, I can't express what a difference identifying his true trigger (strep) and getting real medical help (abx) has changed our lives for the better. Just something to give some thought to.

 

All the best!

[Dedee]

Hello, I don't have much time, so I'm just going to get right to the point (and my opinion). I think your daughter has PANS and has had it for a long time. OCD in children is more than rituals, lining up things, handwashing and counting. Although those are often seen. To me, your description of your daughter is classic "chronic PANS"(my term, not official). I was in denial that my daughter had it since she was a toddler. Now in hindsight I see everything more clearly. Her two older brothers had it but because she wasn't exactly the same as them, I kept telling myself that she was different. Wrong. Now she is eight and has been on a downward spiral off and on since the flu mist 15 months ago. I know it's hard to deal with treating 2 PANS kids at the same time. Going through that myself. But I think waiting to see how your son responds would be a mistake. It's the big elephant in the room....attack it one bite at a time. JMHO.

 

Dedee

[1tiredmama]

Thank you all for your thoughtful and honest responses. You are right, MomWithOCDSon, meeting her "requirements" only seemed to lead to more. I was frustrated. So I had that frank discussion with her today. Although, she denied the "anxious" aspect of her demands, she took it better than I thought she would.

 

I explained to her that while I love our lay-lay time, too, I had expected her to be growing out of it by now because that shows healthy development. I told her that if a child does not grow out of such behaviors on her own, then the loving parent must be the one to outgrow them. Her argument was that this routine was being extended as a way to simply spend time together. I pointed out that we are both home all day most everyday doing schoolwork and chores together, playing games, talking, and watching tv. This child is my shadow! Anyway, with some encouragement, she agreed to a first step of eliminating several morning lay-lays a week, and instead meeting in the kitchen for breakfast and a game. I'm eager to see how she does!

 

Thank you, DCmom, for the reminder that her problems aren't so mild. Next to her brother's issues, and compared to the year dd required four stays in a psychiatric hospital two hours from home, we're still in the black. It's easy to lose perspective. Ds has an appt in May with Dr. L. That first appt costs $675, this is the only reason we need to have a wait and see approach to treating two kids. If this doctor accepted insurance, I'd get both kids in at once, for sure.

 

Thank you, Dedee, for your "right to the point" reply. I appreciate it. I'm sorry that your dd is spiraling downward. We experienced a horrible, nightmarish downward spiral with our dd when she was seven, and it took a year to recover from. I feel for you. I know how draining it is, and mostly how heartbreaking it is to watch. If you ever need to a sounding board, feel free to PM me.