*might* have PANDAS ?

[EAMom]

Your ped sounds great! That's good news about him contacting Leckman.

 

WARNING...I would definitely NOT increase the prozac. We ran into a lot of trouble last May when we upped our dd's Lexapro. The tricky thing is, some of the symptoms of serotonin syndrome look exactly like PANDAS symptoms...dilated pupils, aggressive behavior, rages, defiance...We made things a lot worse by upping the lexapro (b/c the ocd wasn't under control). It canthen be difficult to figure out what is PANDAS and what is the SSRI! Too many variables.

 

I've read, and it has also been the experience of many on this forum, that PANDAS kids do tend to be more sensitve to psych. drugs., so you really need to use caution in dosing (stay low) and also be cautious about using multiple psych. drugs (as worried dad discovered!)

 

On the other hand, I wouldn't take her off the prozac right now either (like your ex wants to do), esp. if she has been on it for a long time and it hasn't caused a problem before. For all the problems of the lexapro, it did help our dd's eating. Now that dd is on Prozac (10mg, same dose as your dd) we feel it isn't doing any harm and may be a little "buffer", damping ocd/eating disorder symptoms if she does have another episode.

[colleenrn]

I think you should have seen improvement by now on the Amoxicillin. Perhaps he would be willing to switch her to Augmentin (Amoxicillin with clavulanate potassium added for better effectivenes). The first year of my daughter's PANDAS we used Amoxicillin and she would test positive for strep within days of completing a ten day course. Just a thought.

Colleen

[browneyesmom]

Wow... found this very old thread while searching for another post and just read through it again... kind of amazing to remember where I was back then... so. totally. naive. I think I actually thought being a nurse was going to give my child a lead in beating this... That just shows how little I knew about PANDAS - the great equalizer!

 

I must have posted this the day I brought him a list of her s/s and wrote on the paper while in the exam room "RF?" I'd made the connection to strep, but they don't teach PANDAS in nursing school... at least they didn't when I went. He shook his head, asked me to wait in the room, walked back inside soon after and handed me literature that would change our lives... information on PANDAS. He told me he thought she might have it.

 

I'll never forget that appointment; I knew that was a turning point in our lives, but had no idea how much.

 

Sadly, she has been sicker than ever the last few months; however, we have now established a good team of doctors working with us on her case, which is complicated... aren't they all? She has been on homebound ed since mid-December, has a 504 now and I'll work with her school (wonderful now, thankfully - elementary was not) on appropriate accommodations when it's time for her return.

 

To all who responded to this thread and my early posts (and many others over time... around this past Christmas-time certainly included) when I was in such shock and desperation... thank you. You may never know what angels in the darkness you were to me.

[Mary M]

If I may quote you

"angels in the darkness"

 

This is indeed an excellent description of this group for me as well.

 

I'm sorry your dd is struggling so much currently. This year has been difficult for my dd as well and for so many others that share this unique bond while perusing this forum and working towards finding healing for our children. Thank goodness we have all found one another.

Mary M

from Michigan

[AmySLP]

Saw your post was about the same time we learned of PANDAS & my daughter was in her initial onset, probably nearly the same time I posted for the first time. NEver thought I'd still be on this board 2 years later, did any of us? So tired of dealing with the uncertainty that is PANDAS.

 

 

Amy