IVIG Scheduled

[Suzan]

I feel sick with worry about whether this is the wrong decision to go through with this low dose, one day IVIG for dd8. It's scheduled for 4/27. Not yet heard back from insurance on whether they are covering it.

 

I have a call out to the neurologist to have a conversation with him to try to feel more comfortable about this and try to understand his reasoning. So far he says he uses low dose to start unless paitent is critical to ensure they can tolorate it. He does not consider her critical since she is maintaining pretty well on 500 mg daily of zith but he wants to get her off that amt of abx. Her movement issues seem to be increasing though and we are having breakthrough OCD and she keeps getting sick.

 

My questions for him so far are:

 

Have you had success with any pandas patients on this dose/schedule?

Do you expect that she will need more than one treatment after we find out if she can tolorate this dose?

 

Anything else I should ask? I don't plan on pushing super hard since I'm kind of scared for this IVIG anyway, but I thought at least we'd get 2 days of the low dose. I mostly want to understand his reasoning and feel somehow confident that this is not a waste of our time and money.

 

Thanks,

 

Susan

[KeithandElizabeth]

Susan:

 

Would your doctor be willing to call Dr. Kovacevic to get his opinion??? Dr. K is great about guiding other doctors. We have done both types of IVIG's and I would say that the low dose can give a boost, but than that boost seemed to dissipate for our son. I believe the higher 1.5 dose is what is really needed for auto-immune illnesses. And with that higher dose, your daughter may never need another IVIG again.

 

These are just my thoughts.......

 

Elizabeth

[peglem]

Allie has had 2 low dose IVIGs- less than .5g/kg. One was on 3/24 and she had the 2nd this last Tuesday. She's supposed to get them every 3 weeks. While I haven't seen any "OMG, she's cured!" results, I haven't had any ramping of symptoms, either. She was already doing pretty good w/ just the higher dose of abx, and has been maintaining steady progress. For the immediate future, I'm sticking with it. I may at some future time see about raising the dose. The problem is, there are not any published studies out there to bring in to a practitioner as evidence that higher dose is needed or that lower dose is ineffective. My daughter has IgG deficiency, so at least that problem is being addressed.

[melanie]

Allie has had 2 low dose IVIGs- less than .5g/kg. One was on 3/24 and she had the 2nd this last Tuesday. She's supposed to get them every 3 weeks. While I haven't seen any "OMG, she's cured!" results, I haven't had any ramping of symptoms, either. She was already doing pretty good w/ just the higher dose of abx, and has been maintaining steady progress. For the immediate future, I'm sticking with it. I may at some future time see about raising the dose. The problem is, there are not any published studies out there to bring in to a practitioner as evidence that higher dose is needed or that lower dose is ineffective. My daughter has IgG deficiency, so at least that problem is being addressed.

 

 

We are also doing 1gram per kilo 60 grams every 21 days weve had 4 and alot of good stuff but also still sick alot and some behavioral issues

 

Melanie

[Fixit]

Suzan....in the mean time...are you keeping up the probiotics......

ANd i really wonder....alot of folks are reporting ramp up right now...no matter if ivig, pex, on long term abx..us too

I really have to think allergies are playing a part here.......

 

would you mind posting who you are seeing...is there another neuro besides doc t who acknowledges panda/pits????

 

 

I feel sick with worry about whether this is the wrong decision to go through with this low dose, one day IVIG for dd8. It's scheduled for 4/27. Not yet heard back from insurance on whether they are covering it.

 

I have a call out to the neurologist to have a conversation with him to try to feel more comfortable about this and try to understand his reasoning. So far he says he uses low dose to start unless paitent is critical to ensure they can tolorate it. He does not consider her critical since she is maintaining pretty well on 500 mg daily of zith but he wants to get her off that amt of abx. Her movement issues seem to be increasing though and we are having breakthrough OCD and she keeps getting sick.

 

My questions for him so far are:

 

Have you had success with any pandas patients on this dose/schedule?

Do you expect that she will need more than one treatment after we find out if she can tolorate this dose?

 

Anything else I should ask? I don't plan on pushing super hard since I'm kind of scared for this IVIG anyway, but I thought at least we'd get 2 days of the low dose. I mostly want to understand his reasoning and feel somehow confident that this is not a waste of our time and money.

 

Thanks,

 

Susan

[Suzan]

Suzan....in the mean time...are you keeping up the probiotics......

ANd i really wonder....alot of folks are reporting ramp up right now...no matter if ivig, pex, on long term abx..us too

I really have to think allergies are playing a part here.......

 

would you mind posting who you are seeing...is there another neuro besides doc t who acknowledges panda/pits????

 

Hi there,

 

We see Dr. Corbier in Concord, NC. He is not a PANDAS specialist but has started seeing more and believes in IVIG for many conditions. I love him because he works well with our Dan! and believes in caution with vaccines, natural supplements for treatment many symptoms and believes in bacteria causing neurological issues!

 

I am working on the yeast issues and my dd is on allergy meds and getting allergy shots. The allergy shots ramp her up as do her allergies too!

 

susan