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  • pandas-cover-cropped.pngYour Child Has Changed; Should You Consider PANDAS?

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My son developed a new tic over the weekend and I don't know what to do about it. It's mild but it is hard for me to not see. His chest goes up and down in short repeated spurts when he is reading or watching his iPad. He says it doesn't bother him but I'm wondering what I should do. It seems like his tics move (if that makes sense). It first started with blinking, moved on to breathing, and now this. It seems that one replaces the other. He is being treated with long term antibiotics, received IVIG last summer, and on supplements. He also had T&A this past November. I can't say he has been 100% tic free - he has week(s) where he will be tic-free and then a short flare that seems to go away. This one, bothers me though. 

He is doing great otherwise. Gained some weight since IVIG (though he's now 8 and wears size 6-7 clothes) and can focus, handwriting is great and  he loves school. I just don't want to go off-track again and wondering .. what should I do?

I did give him a dose of motrin.

thanks!

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My guess is that there is something around that is trigger him.  This is the endless hide and seek game we play - we try to find each trigger and eliminate it, and then another comes.

It could be anything.  For us, it has been:
- when someone else in the house sick, not necessarily strep
- when he had a teeth cleaning done
- when he had mild gingevitus (from not brushing regularly enough)
- when he had ear aches
- on long abx and developed yeast infection
- probiotics

The list can be much much longer, and of course different for different people  - people here have talked about mold, allergens/pollen, and sinus infections as significant triggers.

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I agree with bobh. The first time my son was treated with abx for PANDAS, 5 of his 6 tics disappeared. Then a month later, he developed a new tic (facial grimace).  He clearly had a yeast imbalance, as his bottom was red. The new tic went away after treating the yeast.  We used Gutpro and Candicid Forte.  

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Update. My son caught strep again. First time since T&A surgery and Dr. L is recommending another dose of IVIG. What is your experience with her just throwing out IVIG as the next step without reviewing any recent lab work or ordering labs? She says (which is relayed through her office manager) that my son shouldn't be catching strep after T&A and on augmentin. But I see a lot of parents whose kids are catching strep even after T&A and IVIG. What is your experience. I'd love to know as I'm not jumping in and throwing another money down on a treatment that may only work temporarily. How many rounds of IVIG?

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My daughter had a verbal tic, during a steroid burst it got so intense her tic was going while she was sleeping. After her second steroid burst treatment same thing happened but after it changed to a head shaking tic.

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@Buttrfly1

This is probably not what you want to hear, but my DS14 is showing dramatic improvement, only after IVIG protocol was changed to HD monthly.  He’s had 4 so far. He had previously had 12 weekly LD (1/4 HD), but we didn’t see nearly as much improvement.  He was a severe PANDAS/PANS case.  He’s about 90% recovered. Still need to work on the psychological impact of missing out on 6 years of his childhood, though.  

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That's really great to hear @maryangela. Do you mind sharing how your doctor came to the solution of doing monthly HD IVIG? Did she request labs in addition to seeing him in person? My son is a fairly mild case (according to Dr. L) and I have lost faith in that office. Of course, I want my son back 100% but how can she prescribe that he needs another round of IVIG and oh come in next week with a credit card when you haven't even taken a look at his labs? We in fact, through our integrative doctor found he is fighting myco, ebv, and hand, foot, and mouth. He is also low IGA (and he was the first time too and I don't know if they used the right IVIG solution to address that either). 

How are you affording multiple IVIGs? Insurance? If you don't mind sharing I'd like to know.

Finally - Dr. L's office has repeatedly promised to call me back and it's been two weeks. I feel like now they don't care and all they want is the money. Or if I'm going to be positive, she received so much business that she needs help responding to everyone.

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@Bttrfly1

DS did 1st HD IVIG with Dr. K 18 months ago.  He does not take insurance and the surgical center he uses, did not take our coverage.  We paid out-of-pocket.  My new employer is self insured.  They initially denied 12 weekly LD, but approved after written appeal.  This included results of the Cunningham Panel.  Doctor wanted to switch to monthly high dose, which was denied, but then approved after a peer-to-peer phone call with insurance.  We are very fortunate for the coverage.  We were on the verge of selling our condo to pay for treatment.  2 years ago, my DS was pleading with me to “figure this out and do whatever it takes to help him”.  

As for switching from weekly LD to monthly HD...it is the same amount of immunoglobulin over a 4 weekly period.  Our integrative MD, generally recommends weekly LD, because it lessens the side effects (headache, nausea), but the way it worked for us was that after the LD infusion, it would stir up symptoms for a few days, then DS would begin to improve, and then it was time for another infusion, and symptoms would get stirred up again. The monthly HD is working out much better. 

My DS also is low IGA.  He gets Gammagard immunoglobulin.  I believe that’s best for low IGA.  I don’t think Dr. K uses Gammagard.  He uses the same for everyone, I think.  

I’m sorry you are frustrated with Dr. L’s office.  She seems wonderful, but so many sick kids...hard to keep up. 

We are fortunate that DS’s integrative MD is very responsive to email. 

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I have a 14 year old son who has been struggling with PANS/PANDAS for 2 years now. Too many rounds of antibiotics and marginal effect each additional time he takes a round of them. I suspect he might have Lyme as Mycoplasma keeps showing up. We live in Tallahassee FL and I am looking ideally to see an MD that is open to alternative treatments. Can someone share recommendations, any please. Even if it isn’t an MD and not in FL?  

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My DS14 sees Donald Raden, MD in Highwood, IL.  He’s an integrative psychiatrist.  He specializes in Lyme, but also treats PANDAS/PANS. My son tested negative for Lyme, although he was positive for Mycoplasma on & off.  He’s treating him for Autoimmune Encephalitis, using IVIG, and herbal antiviral, antibacterial and anti parasitic remedies.    He will do phone consults, I believe.  

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