Backsliding and freaking out!

[caring mom]

Hi All,

 

Without going into a long history, my dd7 had been at 99% since December. She was diagnosed with PANDAS and clostridia back in July. Things were going great until she got sick at the end of January with what seemed to be a simple cold. When she got over her cold she started to ever so slightly tic again (she has vocal tic). I called her dr and asked to be put back on Vancomycin again (she had taken it for 8 weeks in November and December. Then when the prescription ran out I didn't refill it because I didn't realize the dr wanted her to continue on it anymore). Altogether she was off the Vanco for 5 weeks. I thought perhaps she got the clostridia back and was certain the Vanco would take care of it again as it has worked so well in the past (it had completely taken her vocal tic away). She has been on the Vanco for over 1 week now and things are not getting any better. The volume of her vocal tic is much lower than it was when she first got diagnosed back in July but it is definitely there. The dr had mentioned that if the Vanco doesn't work I should put her back on Diflucan for yeast. The last time she went on Diflucan she had WICKED die-off symptoms (2 weeks of bad vocal tics and horrible fatigue). I'm very fearful of trying it again as I don't want to make things worse. Right now she's taking 5 ml of azith 2x/day (she's been on it for 6 months now), 5 ml of Vanco 2x/day, 500 billion cfu's/day of probiotics, and Enhansa for yeast (she's not at the full amount she should be taking because she reacts so badly whenever I try to increase her amount). My question is how long do I give the Vanco to work? In the past, it worked within 2 days and it's been over a week now. Should I start her on the Diflucan in case it's yeast? I honestly don't know if she's yeasty or not. Some days her tics seem worse than others. Could it be allergies? We've had high pollen counts lately out here. Any suggestions or ideas? I feel like I'm watching my dreams go down the drain. I thought I had this under control. It's just heartbreaking...

 

Caring Mom

[Mary M]

I have no words of wisdom other than to say my dd12 told me yesterday how many symptoms are back. My dd was as close to 90% as I could have ever imagined in December and Jan 11 things started to backslide. It is so sad to watch, and live through. I think the fact they were both sick and the whole world seems sick with something is causing the culprit. but that is no solace for us moms...

Mary

from Michigan

[TexasDad]

I don't know how long on the Vanco, but if abx are not working the next step seems to be IVIg. If it worked within 2 days in the past, I personally wouldn't let it go longer than 2 weeks without pursuing a more aggressive treatment.

 

That said, I know there is all kinds of blood work that can help get to the root of the problem in case it's not just PANDAS. We had everything under the sun done on our son's blood and spinal fluid, but only to rule out other infections and auto-immune disorders. There are a few tests around blood chemistry that are often done (CaM Kinase, Anti-DNAse, etc.). Don't have any experience with those, but there are those on this forum that could give you a list and explain how the results are used.

 

Above all, please don't let it get the best of you. Your dreams are still safely out of the drain! There are lots of options for testing and treatment that it sounds like you haven't pursued. We all know it's trying and requires a lot of patience, persistence, and faith, but you will get to the bottom of it and she'll be okay. The younger ones seem to respond more quickly once the right treatment is discovered. She has a long, fulfilling life ahead of her. You all do. : )

[matis_mom]

All I can say is that this is my third PANDAS winter... I know it's no consolation but every fall and winter I read the forum and see kids back-sliding because of the flu, a cold, strep. My son did back slide starting in Jan with a stomach flu, then his siblings got strep, and we are still trying to clear it out of the house. I remember last year, and the year before, every winter it's something (for us, usually flu and strep together). But, as the weather improves, things seems to settle back down.

We did steroids and the first taper worked wonders. Now we have a Lyme diagnosis so in retrospect, it was not such a good thing, but if Lyme is not a concern for your child, could you try steroids? How about Advil? It seems besides taking care of the infection, reducing inflamation is key in getting things under control.