What now? Here is my story....

[MomWithOCDSon]

I sent my pediatrician the NIH article and then called her today to tell her that my daughter is doing significantly better. She said she does not believe my daughter has PANDAS. Her reasoning...

 

1. No Choreiform movements.

2. she would not be reacting so well to the antibiotics if it was PANDAS

3. she said since it has been going on so long? I had explained to her that my daughter has gone through phases before where she was obsessed with something. I know it was not everyday but rather I can now remember back(a year or two ago) that she my have had periods where other things may have been going on. I have no idea if it was tied to illness or not.

 

She said too that even if she did have PANDAS we would send her to a neurologist and get her treated with the same medication that they use on kiddos with OCD.

 

I am not denying that there is a possibility that my daughter truly has OCD but I still feel like this looks suspiciously like PANDAS. So, now I am doubting myself and my assumptions. Could use your help here to give me that nudge in the right direction. I am not a Dr. and don't want to act like I am. My Dr. said that there are pediatricians that still do not believe in PANDAS but that was not how she felt. Anyways.....support would be great right about now!

 

Well, I must say, I find her reasoning via #2 to be totally illogical! When was the last time she heard of a kid with "regular OCD" responding well to antibiotics?!?! That ought to be a reason IN SUPPORT OF PANDAS, not AGAINST IT!

 

As for the temporal relationship between strep exposure or illness and the behaviors, this is a sticky point for many of us, especially since some of our kids (like my DS) have been entirely asymptomatic in the classic sense, so there was no way for me to know in the past whether or not his sudden "waxing" of OCD behaviors was tied to strep. He's NEVER responded to strep with a fever, a sore throat or ANY physical manifestation, so I never even knew he had it! But when he was tested and his titers were 5 times the top of the normal range, it was obvious that he was having SOME physical reaction to it . . . it just didn't show like the average kid's case of strep.

 

For 6 years, we got the same answer that you did: doubt that strep had anything to do with the OCD, and even if it did, it doesn't matter now because what he has is OCD and it needs to be treated as OCD is typically treated, i.e., therapy and psych drugs. No strep tests, no antibiotics, no medical response to the issue whatsoever. It wasn't until Sammy of "Saving Sammy" represented with asymptomatic strep that I realized I might've been on the right track all those years ago, and that I needed to circle the wagons and press on for the right answers rather than just the convenient old saws.

 

But I'm trying to let that be ancient history now and rejoice in having found some better answers and some meaningful support FINALLY! Bright you, to have come to it so quickly!

[P_Mom]

Have you seen Dr. K's web-site? http://www.webpediatrics.com

 

He gives a good description of PANDAS. You will see it mention that most parents do not recognize the signs the child gives of their PANDAS before the "big explosion." (the initial signs of PANDAS in both my sons went over our heads...hindsight is 20/20) The fact that your child exhibited behaviors beforehand does not at all mean it can't be PANDAS.....it actually supports it.

[Jennskids]

Thank you again. I was feeling a little deflated this afternoon. My husband and I feel like this is a very reasonable path to follow right now and it really makes sense. We figure that if we are wrong and our daughter does have OCD it will still be there, the meds and therapies will still be there and the choice to treat it as such will still be there.

 

BUT...what we are afraid of is not following this path and ending up with a daughter who continues to get worse with PANDAS because we didn't follow this up. As you all know it is horrible to see the pain (inside for my dd) and not be able to do anything.

 

She looks great today! She was happy, playing and while she did come up to me twice about needing to wash her hands when I told her she was fine she said "OK" and went on her happy way. I can deal with that. Her hands are already looking a million times better. The bleeding has stopped and they almost look normal. She does have eczema but it was getting HORRIBLE with all the handwashing!!

 

I got the book Saving Sammy from the library today. I need to go grab that out of the car right now. I also just went and looked at Dr. K's and Dr. Triffileti's website. Great info there!