Update and questions

[dut]

Hello

 

I was hoping for some guidance on what to do next (if anything) for our dd.

 

I have a dd7 and a ds3 both with a PANDAS dx. Ds is doing fine.. some low level sensory, still an awful sleeper and spirited :-) but fine.

 

My dd is my concern for the moment.

 

quick history - dd was neurotypical until march 2008. Dd was dx in April 2008 following onset of sudden and severe OCD, tics, choreiform movements, emotional etc etc.. very classic. Positive for beta hemolytic NOT group a strep. She responded beautifully to amox and was at 30% symptoms after 2 weeks and in total remission by 4 months.

 

She was put on proph abx (zith). Since then she has had 1 more major episode that didn't respond to abx but remitted fully with time, about 5 months. Another episode was going full blown but was stopped in its tracks within 12 hours with steroids. She had a few minor flares in response to various illnesses but nothing major until last Mar. She had 3 back to back exacerbations with full remission between the first two. The last one was too much for her system and she went full blown with OCD, anxiety, oppositional behaviour etc.

 

Steroids got rid of all of her OCD within 12 hours of the first dose and calmed things but we dealt with fears and oppositional behaviour all summer. At the end of summer we tried a course of augmentin to get rid of the last symptoms. Within 3 days the oppositional behaviour had gone but 5 days later she developed serum sickness in response to the abx. She was very sick for 3 weeks and even hospitalised at one point.

 

At this point she was taken off all abx and to date hasn't gone back on. Unlike last year where she flared with nearly any illness, this school year, whilst she has had 4 colds and a couple of tummy things and I've noticed a whiff of PANDAS at some of them, nothing has stayed beyond a couple of days.

 

My problem is that we still struggle with a kind of general anxiety thing.. mainly at the end of the day when she gets tired and she'll start the night in her own bed but has to come to my bed during the night.

 

She is doing well at school, happy, social and other than the night time thing, is doing very well. I am so happy to have her at this 95+% level but in the past she has always remitted FULLY. I'm not sure what's different this time.

 

Is it a low lingering infection, an open BBB, learnt behaviour? As she is doing so well otherwise I am loathe to rock the boat but am worried that this will become her new norm or baseline. If this were just her personality then ok but it's not, it's been imposed on her by her disorder.

 

I would love opinions on what I could be doing.. She is NOT on abx currently and can never take penicillins again and shouldn't take cephalosporins either. She takes omega 3s, probiotics, good multi and mineral, b vit complex, vit d, enzymes and ala.

 

Sorry for the long post and thanks for any advice.... :-)

Edited January 25, 2011 by dut

[dut]

any ideas? :-)

[Megs_Mom]

Hi Dut - Ah, that last pesky 5%. Getting our dd back to her bed on her own was impossible in an exacerbation. But once she was at 95%, we came to realize that this was a habit based on a prior fear that was so strong I would liken it to a possession or torture. Breaking that pattern was clearly not going to be easy.

 

We used a kind of ERP for this. We developed a plan with our dd. Our situation was slightly more intense than yours (I was in her bed, and it was all night, not just middle of night), so I'll adapt this to your situation. First we accepted as "norm" that she was coming to our bed. Then we agreed to a new baby step. So if she is getting into your bed with you, as a first step, place a pallet/cushion next to your bed. You might agree as the first step, that she can still wake you up, but then has to lie down on the cushion and go back to sleep without additional reassurance. Then you dial this down to her just touching you before laying down, no talking at all. Once you have mastered this (4-5 nights), then you agree to move the cushion away from the bed - by an inch, a foot, whatever she seems to be able to tolerate. You might also ask her to lay down without waking you (but if that is too hard, you can add that step later).

 

Inch by inch, or foot by foot, she slowly moves back to her bed (hope you have a small house ). You can celebrate milestones, such as sleeping around the corner, or at the top of the stairs - by having a friend over for a sleepover, or doing a pizza party (no one needs to know why the party is happening except your family).

 

If your situation is a little different and you need different examples how to break a fear based ritual down into small steps, please feel free to ask.

 

Hope this helps. To this day, I am still giddy when I wake up in the morning & realize she slept all night (this is our norm now). She is thrilled by this too.

[LNN]

I'll second Meg's Mom on using ERP to break residual habits, discussing with DD that you're not doing this as punishment, but to free her from the fear monster that's harassing her. Make sure you align yourself with DD as a team, working together against a common enemy. If she sees it as you vs her, her energy will go toward wanting to be with you to keep the bond instead of focusing energy on defeating her anxiety. Mind set is key to success.

 

Also make a note of how each night goes. If it's habit, you should see progress in a fairly short time. If you're still struggling in about the same place a month from now, that "lingering infection" thought you have might need to be investigated.

 

I hear you on not wanting to rock the boat. Life can get so insane that when you get to 95% you think it's selfish to want 100% and maybe you should just be happy with how far you've all come. The thought that being "greedy" could rock the boat and send you backward is enough to make you just hold your breath and leave things alone. But obviously if you're posting, something inside is letting you know this isn't enough for your family. Time to test the waters ...Good luck and try to think positive!

[dut]

thanks for the suggestions.. we are slowly trying exposure. She's very good really 'cos she offered to go back to starting the night in her own bed about a month ago but we have stalled since. My worry that it is still low level flare and not learnt is that as she gets tired toward evening she gets frightened.. it feels organic and not learnt/psychological 'cos the fears aren't the same focus.. it's nebulous fear and then she will alight on somthing to pin her fear on.. if that makes sense. And during the night she kinda wakes in a night terror state.. awake but not aware minus the terror but with a lower level of fear or anxiety and is in my room sort of before she is aware of what she is doing...

 

i don't know...probaly just greedy and I should be, and am, thankful for where we are.

 

thanks again, I'll talk to her and see if we can devise a plan for moving out. Cuddly toy bribes work well with muy dd.. we'll try that as an incentive :-)