Does IVIG help with tics and allergy shot question.

[Lkaanda]

Hi. We have been seeing Dr. B. for a while now for my sons PANDAS. We have gone through most antibiotics, and have not seen great results for his tics. Emotionally he has gotten much better over time.

We are at a point where IVIG is being discussed. For him the tics are the worst part. I am wondering if anyone has seen results with reducing tics after going through IVIG? I though I have read that it does not help with tics.

 

Also wondering if anyone has had allergy shots made up through Dr. B. or another doctor and had to have them administered somewhere else? He tested positive for dust, trees and mold and we are discussing starting him on the shots. We just don't know who would administer someone else's shots and if it would be the same as our out of office copay of $50. That would add up fast.

 

Thanks for your help.

[tj21]

Did you do the Cunningham Panel? CamKinase is associated w/tics, and in our case ds15's was elevated and we've had a huge reduction in tics with current PANS treatment, and even more so after IVIG (March 2015). But we mainly did the IVIG b/c his IgG was so low, he needed a boost to continue to reduce inflammation and other PANS symptoms.

 

He still carries a TS diagnosis and only time will tell if the tic disorder is only PANS or just PANS-aggravated TS.

[NancyD]

One high-dose IVIG infusion eliminated my DD's vocal and motor tics back in 2008-2009. It took about 9 weeks to see any results but by 12 weeks they were 75% gone. It took up to a year for them to be 100% gone. OCD, on the the other hand, was not helped at all by IVIG, and in fact, got worse. We experienced the opposite of what most people are told. My DD was 12 at the time and I was told (by Dr. K) because of her age IVIG would likely not help the tics at all. I was very happy to prove him wrong!

[PowPow]

Nancyd, how is your daughter now?

[NancyD]

Terrible. She's been home for two years on daily IVs. Everything seems to cause an autoimmune response. Even IVIG. Severe anxiety, OCD, and intrusive thoughts. We have just started Low-Dose Imunotherapy (LDI) for Lyme. I'm hoping that will help!

[Lkaanda]

Thank you for your help. We have not done the Cunningham Panel yet. We talked about it, but did not feel it would change the outcome of the treatment. And of course since our insurance doesn't cover anything we are doing we have to really watch where we spend our money. Unfortunately the IVIG will be out of pocket which I believe he estimated at $5000.

We are very hopeful that this will help him with his tics, its nice to hear that it has helped other kids. Now to figure out the allergy shot part of it.

 

Thanks again for your quick replys!

[tj21]

@lkaanda - I hear you on the out-of-pocket expenses, it's so stressful. 5000.00 total for IVIG (high dosing?) is a good price.

 

After we did the Cunningham, I was actually relieved to see that ds15 TS dx might be PANS-related.

 

Re. allergy shots: we are controlling most w/PANS supplements, changes in diet, and home mold abatement. Would like to get them for dog and horse hair/dander b/c we do thx. horseback riding, and are contemplating a thx. companion dog.