Need advice

[princess1]

My 9yr old daughter was diagnosed January with Pandas and had only a month of severe OCD symptoms.It was hand washing,fears of imperfection and she was constantly questioning us for reassurance.Very hard and painful time. We have a wonderful doctor who treated her with abx and she has been now on 6 weeks worth.I feel a major change since the abx started. Hand washing stopped and questioning stopped .When I ask her if she feels any better she says that she does not know.Her anxiety appears to be less but she has no awareness if its less.

I want to believe its improvement or is she hiding it well?Is the OCD in your face like it was in the first month with her? Are these Pandas kids even aware of the changes in them selves. I have a follow up appt and not sure about it all.Its just a nightmare and I don't think any of it feels real.Any parents on the Pandas planet able to get straight ansewer from their kids? Thanks for any insight.

[Dedee]

First let me say how sorry I am to welcome you to this "club". However, it is wonderful that you caught it early and have started treatment right away. When my son would have flare ups, he was very expressive and would tell me that he had thoughts that went over and over in his head and he couldn't get them to go away. That's a dead give away right. On the other hand, my daughter has no idea why she does or acts the way she does. She just cries and says she hates the way that she acts sometimes and asks me if she is stupid for acting like that. She has horrible rages and then cries for long periods after because she "hates being a mean person". She is 7 and my son was 6 when he had his first episode of PANDAS. I think all the children are different in their presentation and their awareness. The only thing consistant is the ###### that all the families experience. I hope you have a good visit with your specialist.

 

Dedee

[thereishope]

Well, there is a chance all the OCD is gone. But, OCD can involve obsessions which occur more in the head. Also, there is a chance that there is still some OCD remaining, but it is slight or you and she may not recognize it as OCD. Often, it isn't until the OCD cannot be completed does the real anxiety surface.As for hiding it...kids do that too. My 5 year old did. Remain observant and you can try to talk to her about any worries or thoughts she might have that she doesn't like and wish would stop.

[peglem]

She may not be consciously hiding it. Sometimes the brain will make up explanations to make obsessions and compulsions seem reasonable.

[KaraM]

I've experienced both some awareness and lack of awareness with my dd8.

 

I don't even know where to begin or how to organize this response. It's going to be a stream of consicousness (probably because we just went out to dinner and I had a much needed and long awaited 1 1/2 Lemon Drop Martini's - meanwhile my dd8 had to leave the restaurant because she saw someone in a wheel chair and was afraid she might catch their disability...but I digress)

 

Last year she would often have PANDAS rages. At one lucid point, she drew a picture of a rectangular box which represented her brain. In the top right hand corner, she drew a bunch of lines coming into the box and wrote the word next to them "uh oh bad." Inside the box was a bunch of scribbles. Coming out of the bottom left hand corner was a shower head and streams of lines. Next to that she wrote, "by by good." This was an indicator to me of how these rages come in waves or distinct episodes. My reason for mentioning this is that now I ask her if "it"(meaning the picture) is happening. She knows what I'm talking about and can have a conversation about it when "it" is not happening. However, she can't verbalize it or admit to it when I ask her if 'it" is happening.

 

Here is another conversation I had with her after she started abx last year and was doing a lot better. I asked her if she "felt" better. She said she did. I asked her "how" she felt better. She couldn't say. So I asked where she felt better and then asked if she felt better in her stomach. She just looked me dead on (which was also new) and (I wish I had a video of this), wiggled her head to the beat of her word with a tone telling me I was an idiot for asking, and said "IN MY HEAD."

 

So, I guess I'm saying here, that I think sometimes they are aware and sometimes they aren't. Sometimes they are aware, but just can't articulate.

And, sometimes they do hide it - whether consicously or subconcisouly. I see this right now with her ability to hide things at school. She's definitely embarrased about her thoughts and fears and does not want others to know, so somehow or other, she keeps it under wraps.

 

Kara

Edited March 23, 2011 by KaraM

[Familyof5]

Wow. Love your post, thanks for sharing.

[JJMom39]

KaraM--Ditto on loving your post and thank you for sharing. Your description of your dd's drawing really touched me. It made the inner anguish that all of our kids suffer so tangible.

[Mary M]

My dd is now almost 13 and it is only during this current exacerbation that she has been able to verbalize her experiences. In her words, "I hide it all very well, no one has any idea how much is going on inside my head". She also explained that what we actually see is only a tiny fraction of what is really going on.

Mary

from Michigan