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IVIG Recommendations?


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. Because of our phone call and several others from families having poor success with monthly IVIG he called the doctor who was prescrbing it, himself a brilliant, talented and highly regarded immunologist and convinced him to change his protocol to a single or infrequent infusion of at least 1.5 g/kg of IVIG. Dr. K told me the reasons, but it is not my place to try to explain them, even though I did that poorly on a previous post.

 

 

Was the other doctor Dr. Gupta at UCI?? If so I wish someone would have told him that before we paid out of pocket for 16 infusions. We're still paying for it and will be for a while.

 

I contacted Dr.K when this first started for us. My son also has autism. I got back a brief email saying something like a prednisone push usually indicates how well a child will respond to IVIG and with autistic kids the results are not always accurate for some reason. Kind of blew me off and didn't seem interested in taking on my son as a patient. So I had to go elsewhere. It's been the story of my life. I keep trying to do the right thing for my kid, spend tons of $$$ and always end up with the person/treatment protocol that doesn't work.

No, it was not Dr. Gupta. Please don't take Dr. K's brief email response personally. He is so busy but usually manages to get a quick reponse to us all. I would recommend setting up a phone consult with him and he can then really get into your case and talking is always better that writing. We just had another consult with him yesterday regarding low-dose ivig (vs 1.5 dose) and that it almost always does nothing for Pandas (I said ALMOST, so pls no bashing!). We are definitely staying with the 1.5 dose, waiting at least 3 months and then decide on another high-dose. I haven't heard a lot of positive stuff about Dr. Gupta. Best of luck.

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No, it was not Dr. Gupta. Please don't take Dr. K's brief email response personally. He is so busy but usually manages to get a quick reponse to us all. I would recommend setting up a phone consult with him and he can then really get into your case and talking is always better that writing. We just had another consult with him yesterday regarding low-dose ivig (vs 1.5 dose) and that it almost always does nothing for Pandas (I said ALMOST, so pls no bashing!). We are definitely staying with the 1.5 dose, waiting at least 3 months and then decide on another high-dose. I haven't heard a lot of positive stuff about Dr. Gupta. Best of luck.

 

 

Sadly, after spending $45K + for the IVIG we have done in the past, even if I spoke to Dr. K, I wouldn't have the money to pay for even one IVIG at 1.5 dose. When we first started my son was 48 lbs, now he's 78 lbs and the cost would be outrageous, then add airfare and hotel. It would be impossible to even attempt to scrape up. Credit cards are maxed, 2nd mortgage is at it's limit, and I think the family is tired of giving us money

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I am just kind of curious how all the controversy about IVIG and doseage all got started. Back in the fall, it looked to me like IVIG or PEX was the way to go. Then some were reporting not so promising results, and I am under the impression that is how the monthly IVIG became all the rage. Now those who were doing monthly are also reporting not so hot results, and so the advice is now back to one IVIG.

 

I have no experience with any of this, but am interested in others experience, as I'm sure many others here are. I guess my question is basically, how did it go from the one IVIG or PEX to the monthly? why did people start doing that in the first place if it wasn't the right way?

 

Forgive me for asking, but SFmom is with Dr. K. and has had several IVIG. If Dr. K. didn't think that was correct as per the explanation that is put forth here in this thread, then why did he do it with SFmom?

 

Thanks, its just getting very confusing.

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Hi, Faith:

 

I'll take a shot at this and try not to make a mess of it. I'm no Buster! :lol:

 

Our son has had 3 IVIG infusions with Dr. K. As Dr. K explained to us originally, one high-dose infusion (1.5 g/kg over 2 days) is often sufficient to resolve PANDAS (based on his clinical experience). However, he warned us up-front that - for older kids or recalcitrant cases (our son is both, unfortunately) - it's often necessary to do a 2nd high-dose infusion. Because our son's condition had worsened significantly 6 months after IVIG round 1, he recommended 2 high-dose infusions 28 days apart to really "knock the PANDAS out." For our son, even the 2 high-dose infusions 28 days apart didn't do the job until we added the Saving Sammy dose of augmentin XR.

 

I think that some doctors who have less clinical experience with PANDAS but believe in PANDAS as an autoimmune disorder started thinking "hey, we have to do regular monthly infusions for other immune conditions, why not for this?" This thinking certainly might have been reinforced by cases like our son's, where there was significant relapse after IVIG. But I don't believe there's as much clinical history / track record of how effective the monthly, lower-dose IVIG is for PANDAS vs. the high-dose protocol used by NIMH, Dr. K, etc.

 

I understand and share your confusion, though. There have been a number of parents on this forum whose PANDAS kids were not fortunate enough to have a "one and done" experience with IVIG. Is that just, as some have posted, because the successful cases stop frequenting the forum, but those of us who are still searching for a cure stick around? Don't know.... Dr. K told us he's had > 80% success rate with IVIG for PANDAS, so maybe the other 20% are the folks still actively (or desperately?) posting here.

 

Wish I had better insight. Maybe Dr. T can clarify the different IVIG dosage schools of thought?

 

 

I am just kind of curious how all the controversy about IVIG and doseage all got started. Back in the fall, it looked to me like IVIG or PEX was the way to go. Then some were reporting not so promising results, and I am under the impression that is how the monthly IVIG became all the rage. Now those who were doing monthly are also reporting not so hot results, and so the advice is now back to one IVIG.

 

I have no experience with any of this, but am interested in others experience, as I'm sure many others here are. I guess my question is basically, how did it go from the one IVIG or PEX to the monthly? why did people start doing that in the first place if it wasn't the right way?

 

Forgive me for asking, but SFmom is with Dr. K. and has had several IVIG. If Dr. K. didn't think that was correct as per the explanation that is put forth here in this thread, then why did he do it with SFmom?

 

Thanks, its just getting very confusing.

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Faith,

 

As you know, each child successes and setbacks will be different based on a lot of variables but here is our detailed story so you can better understand why our son was treated three times by Dr. K. These were not planned treatments but decided on based on how he was progressing and exposures at the time.

 

Our son had his first IVIG and did really, really well but at six weeks post IVIG he was exposed to strep from a parent who was helping in his class, the half life of the donor antibodies were expiring at that point and we saw a continued 'slow' decline. Just prior to the second IVIG treatment at 8 weeks there was a second exposure to strep and his body was not strong enough to get beyond the exposures.

 

Our son did well once again after the second IVIG but he still had a cough TIC and minor blips of repeating words in his head. From the very beginning Dr. K explained to me that kids with primary TIC presentation.... that the TICS are harder to eradicate with IVIG. PEX followed by IVIG, depending on the state of the immune system is sometimes the better option for TICs and why I was recommending to you to test your son's immune system (to help you decide which way to go... if you should ever try a more aggressive treatment for your son). Three days after Christmas our daughter came down with a fever and bull body rash. It looked like Scarlet Fever but because she was put on antibiotics prior to swabbing results came back negative. At that point, a third treatment was decided on with Dr. K to essentially 'knock' it out of the park, eradicate the last remaining cough TIC and protect him through the remaining winter months.

 

Since our third IVIG..... he has done extremely well again. There have been no repeating words in his head and the cough TIC did resolve. He is happy. He was exposed to strep 3 weeks ago and a new TIC appeared, blowing air through his nose and he had some minor bedtime fears and for the most part things resolved within 48 hours. The new TIC would come and go but I could tell it too was resolving. Last Friday, exposed to 'pink eye'.... most likely strep related and the cough reemerged (why I suspected he had been exposed again). The cough resolved by bedtime that night. As of this morning, no coughing, I did see him blow air through his nose, we did have some mood liability, complaints of headaches and night waking last night for the first time in over a month after being exposed to the same child yesterday morning. THIS MORNING HE LOOKS GOOD, mood is great but we don't know which way this will go for him yet. He is obviously still responsive to exposures and we debate keeping him in school but for now we are very, very hopeful a fourth treatment is not required. Dr. K was on the fence about the third treatment and questioned if it was really required. I pushed for that treatment!!!!!!

 

As you can see there is a lot more to our story and I've been willing to share this so others can understand why we've had success or failures with our specific treatment. Dr. K is not an advocate of monthly IVIG especially of the lower dose. He is very willing to assist each child individually to see them through recovery. He really likes to take a measured approach and see how each child does... there are no set rules 'as you are aware'. Some only need one treatment, some need two and others have needed more. I do know, he treats 2 to 4 kids a week with great success and many are not even familiar with this forum.

 

As for my friends son who had RF.... his TICs did resolved after the first treatment but his OCD ramped up after exposures. He was retreated at approximate 12 weeks post his first IVIG.

 

 

 

 

 

I am just kind of curious how all the controversy about IVIG and doseage all got started. Back in the fall, it looked to me like IVIG or PEX was the way to go. Then some were reporting not so promising results, and I am under the impression that is how the monthly IVIG became all the rage. Now those who were doing monthly are also reporting not so hot results, and so the advice is now back to one IVIG.

 

I have no experience with any of this, but am interested in others experience, as I'm sure many others here are. I guess my question is basically, how did it go from the one IVIG or PEX to the monthly? why did people start doing that in the first place if it wasn't the right way?

 

Forgive me for asking, but SFmom is with Dr. K. and has had several IVIG. If Dr. K. didn't think that was correct as per the explanation that is put forth here in this thread, then why did he do it with SFmom?

 

Thanks, its just getting very confusing.

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Doesn't some of this have to do with comorbid immune deficiencies? I always assumed that it did. If a kid presents with a real immune deficiency, the treatment for that - PANDAS aside - is generally monthly IVIG. My understanding is that a decent subset of PANDAS kids have immune deficiencies and in these cases, the prescription for monthly IVIG is based at least as much on that as it is on any PANDAS symptoms that may or may not be active.

 

My immunology tests showed up with specific antibody deficiencies even post (distant) vaccination, and my immunologist's office told me that given my track record of chronic/repeated infections, if I did not respond well to repeated vaccination, I was going to be prescribed monthly IVIG regardless of any presence/latency of PANDAS symptoms.

 

 

 

I am just kind of curious how all the controversy about IVIG and doseage all got started. Back in the fall, it looked to me like IVIG or PEX was the way to go. Then some were reporting not so promising results, and I am under the impression that is how the monthly IVIG became all the rage. Now those who were doing monthly are also reporting not so hot results, and so the advice is now back to one IVIG.

 

I have no experience with any of this, but am interested in others experience, as I'm sure many others here are. I guess my question is basically, how did it go from the one IVIG or PEX to the monthly? why did people start doing that in the first place if it wasn't the right way?

 

Forgive me for asking, but SFmom is with Dr. K. and has had several IVIG. If Dr. K. didn't think that was correct as per the explanation that is put forth here in this thread, then why did he do it with SFmom?

 

Thanks, its just getting very confusing.

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But if you want to snuff out PANDAS, what makes sense?

Give a big dose of IVIG one time, a month later, give smaller doses for the immune deficiency?

But that would risk throwing the system out of whack.

Given I have a child with a mild IGG immune deficiency, it would seem to mean attack PANDAS hard.

After all, he had low dose IVIG last year over two days in October and that may have helped the immune system a bit.

 

Just wondering.

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But if you want to snuff out PANDAS, what makes sense?

Give a big dose of IVIG one time, a month later, give smaller doses for the immune deficiency?

But that would risk throwing the system out of whack.

Given I have a child with a mild IGG immune deficiency, it would seem to mean attack PANDAS hard.

After all, he had low dose IVIG last year over two days in October and that may have helped the immune system a bit.

 

Just wondering.

I'm so frustrated because I'm trying so hard to understand this and still, it doesn't make sense to me.

 

I get that high dose stops production of immune cells (B cells?) in the bone marrow. But I don't understand why, when that production comes back, anything would be different- wouldn't the bone marrow keep producing the same kind of immune cells it did before?

And if the donor IgG contains some of the renegade antibodies that are causing the problems, why wouldn't a higher dose contain more?

And how would a lower dose make things worse?

I've looked for answers on pubmed....I'm not finding them. Also, reading the MS sites, many with that autoimmune disorder are getting monthly high dose ivig.

 

My child does have immune deficiency- not just IgG,(with an IgG4 subclass def. as well) but also IgA and IgE. You know what? There's not much info on that either. Apparently, each of these, all by themselves, puts one at greater risk for autoimmune disorders.

Does my daughter only have PANDAS, or are there other autoimmune issues. There is so much unknown. So much guesswork. So much frustration.

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I could be wrong here, but if some here are finding this 'immune deficiency', could that not be from antibiotic use? doesn't abx suppress the immune system a bit?

 

I think that is a possibility- not so much because the immune system is suppressed, but because the way the immune system "learns" is by encountering pathogens and developing ways to defend against it. Antibiotics reduce bacteria- the immune system doesn't need to respond as much.

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