Should I Go to IVIG Now?

[Christianmom]

My son's blood work (ASO, mycoplasma, western blot, immunoglobulins, IgG subclasses, ceruloplasmin, ferritin, cbc) is all normal now except for DNase (is rising significantly) and streptozyme (200). He has been on antibiotics since the end of October--augmentin XR, Biaxin, Omnicef, Clindamycin, Azithromycin. He is now on Clindamycin with Ripamfin on days 7-10. Dr. T said the Clindamycin/Ripamfin is the "strongest strep protocol we have." He said if after my son is off the Clindamycin/ripamfin we don't see major improvements in his OCD he wants to go to IVIG. He says we could be tracting infection forever and that basically there are no other strep drugs to try. He also ordered erlichia, babesia, and bartonella titers and we are awaiting the results (he's not expecting to find anything). At this point, assuming the erlichia, babesia, and bartonella tests are negative, would you move on to IVIG or keep trying to track infection.

 

One of the reasons I am asking is because the IVIG will probably not be covered by our insurance since he has no immune deficiences that can be shown by blood work. So I want to make sure we have the best possible IVIG outcome the first time.

 

Thank you all for your posts. I have learned a great deal from this forum.

[kimballot]

My son's blood work (ASO, mycoplasma, western blot, immunoglobulins, IgG subclasses, ceruloplasmin, ferritin, cbc) is all normal now except for DNase (is rising significantly) and streptozyme (200). He has been on antibiotics since the end of October--augmentin XR, Biaxin, Omnicef, Clindamycin, Azithromycin. He is now on Clindamycin with Ripamfin on days 7-10. Dr. T said the Clindamycin/Ripamfin is the "strongest strep protocol we have." He said if after my son is off the Clindamycin/ripamfin we don't see major improvements in his OCD he wants to go to IVIG. He says we could be tracting infection forever and that basically there are no other strep drugs to try. He also ordered erlichia, babesia, and bartonella titers and we are awaiting the results (he's not expecting to find anything). At this point, assuming the erlichia, babesia, and bartonella tests are negative, would you move on to IVIG or keep trying to track infection.

 

One of the reasons I am asking is because the IVIG will probably not be covered by our insurance since he has no immune deficiences that can be shown by blood work. So I want to make sure we have the best possible IVIG outcome the first time.

 

Thank you all for your posts. I have learned a great deal from this forum.

 

 

It sounds like you have made a lot of progress in the past few months! I am wondering if the testing for lyme/ coinfections will be done through igenex. If it is done through your standard lab, I would not assume negative results are really negative, and I would pay the $ for igenex testing before moving to IVIG.

 

Also, check carefully into your insurance policy re: IVIG. Find out what the requirements are for coverage and if they cover for autoimmune disorders - if so, find out what the specific requirements are and get the blood tests they require. There are some insurance companies that will cover for PANDAS - United Health Care being one.

 

Finally - have you done a steroid taper at all (that can help to give a clue about how IVIG will work - though it is not 100% accurate)... and - are you using anti inflammatories (eg: quercetin, fish oil, etc). The theory is that both steroids and anti inflammatories can help to close up that blood brain barrier and can help to diminish symptoms - especially once the infection is cleared.

EDIT: I meant to add in - be careful about talking about PANDAS to your insurance company. There is no diagnostic code for PANDAS and your insurance company may have a clause that says NO to IVIG for PANDAS.

Edited March 2, 2011 by kimballot

[Christianmom]

The lyme test is not through Igenex it is through Lab Corp. Have not decided whether to go through with Igenex testing since my son's western blot only showed one band--IgG P66. The western blot was done three times. Hate to put out the cost for the Igenex, especially since we may have to pay the IVIG bill.

 

We did a 5-day steroid burst with great results--2 days at about 80%. I would say he was at 100% those two days, but I didn't want to push him to find out since he had been so ill. He was definitely much, much more like his old self.

 

Two weeks later we followed the 5-day burst with a 30-day taper and there was no improvement. Dr. T doesn't no why. We did run blood work at that time and found that his DNase was rising, but he didn't think this should have affected the results of the 30-day taper. He did suggest recently that possibly the taper dosage wasn't high enough. It was 80 mg. (my son is 16, 115 lbs.).

 

After the rifampin is done on Saturday, Dr. T wants to do a 10-day (I think) steroid burst at 100 mg. If there is the positive "burst" again, he wants to go on to IVIG.

[SSS]

I am not savvy enough yet in PANDAS, I feel, to give advice on this, but outside looking in, I would say you have one of THE best PANDAS/PITANDS Doctors in the country, and it sounds like he has been amazingly thourough in checking out your child-

I would trust him.

I think when deciding IVIG, it also depends where your child is at in life, what place your family is in- my daughter was becoming literally un-functional, I was very scared for her brain, and our family was suffering terribly (and so was she, obviously)

G/L in your decision, sending PV's----