to those whose kids do monthly IVIG

[fuelforall]

Every four weeks? Exactly 25 days? Is there a science to this?

Just wondering if people could weigh in.

[sf_mom]

Every four weeks? Exactly 25 days? Is there a science to this?

Just wondering if people could weigh in.

 

 

Every 8 weeks, 1.5 m.g. per kilo gram (hopefully only three treatments are required for us).

 

-Wendy

[nevergiveup]

Wendy,

 

Have you rerun the cunningham tests to see if autoantibodies have reduced? I am very interested in seeing if these markers go down. Not the Cam Kinase just the autoantibodies?

 

We do every four weeks, just switched to one gram but will probably change this to the 1.5 grams every 60 days also. Still getting tests in line and getting consults. And insurance approval.

 

Every four weeks? Exactly 25 days? Is there a science to this?

Just wondering if people could weigh in.

 

 

Every 8 weeks, 1.5 m.g. per kilo gram (hopefully only three treatments are required for us).

 

-Wendy

[melanie]

Every four weeks? Exactly 25 days? Is there a science to this?

Just wondering if people could weigh in.

 

 

Every 8 weeks, 1.5 m.g. per kilo gram (hopefully only three treatments are required for us).

 

-Wendy

 

We do every 21 days I dont know exactly why 21 but..And its 1mg per kilo were approved for min 6 months and are probably going to go alot longer SF mom are you getting the 1.5 mg covered from the insurance comp?

 

Melanie

[KeithandElizabeth]

We are switching, after consulting with Dr. Kovacevic.

 

We will no longer do monthly and we did the 1.5 dose and now we are going to wait at least 3 months, and hopefully much longer, to see if we will ever need another one.

 

Dr. Kovacevic felt that our monthly small doses were not helpful because they never shut down the white blood cells in the bone marrow, which tells the body to then make new, better, antibodies. And he felt that the monthly kept "stirring" the immune system. He said to us that 8 to 13% of the children will need a second IVIG, at the 1.5 dosage.

 

We just keep learning as we are going over here.........

 

Elizabeth

[sf_mom]

We have not rerun CaM Kinase/auto antibodies but we plan to in the future. I am thinking either at 6 months or one year post his last IVIG treatment. Unfortunately, Madeleine Cunningham and Dr. at Stanford stated the results might be skewed from donor antibodies if it is done any sooner post treatment AND, unfortunately our initial CaM Kinase result were also skewed because he had just completed a steroid burst.

 

At this point, if we see continued improvement and there is no OCD we will not retreat with IVIG and wait it out...... until, until. Its scary but we are hopeful with time the remaining TIC will resolve.

 

I will also be tracking my twins CaM Kinase to see if there is any change over time to determine potential further treatment.

 

I think your choice to up the dose is fantastic and pray you will see similar results.

 

 

 

Wendy,

 

Have you rerun the cunningham tests to see if autoantibodies have reduced? I am very interested in seeing if these markers go down. Not the Cam Kinase just the autoantibodies?

 

We do every four weeks, just switched to one gram but will probably change this to the 1.5 grams every 60 days also. Still getting tests in line and getting consults. And insurance approval.

 

Every four weeks? Exactly 25 days? Is there a science to this?

Just wondering if people could weigh in.

 

 

Every 8 weeks, 1.5 m.g. per kilo gram (hopefully only three treatments are required for us).

 

-Wendy

[sf_mom]

Yes, it was covered after we met deductable.

 

-W

 

Every four weeks? Exactly 25 days? Is there a science to this?

Just wondering if people could weigh in.

 

 

Every 8 weeks, 1.5 m.g. per kilo gram (hopefully only three treatments are required for us).

 

-Wendy

 

We do every 21 days I dont know exactly why 21 but..And its 1mg per kilo were approved for min 6 months and are probably going to go alot longer SF mom are you getting the 1.5 mg covered from the insurance comp?

 

Melanie

[fuelforall]

We are switching, after consulting with Dr. Kovacevic.

 

We will no longer do monthly and we did the 1.5 dose and now we are going to wait at least 3 months, and hopefully much longer, to see if we will ever need another one.

 

Dr. Kovacevic felt that our monthly small doses were not helpful because they never shut down the white blood cells in the bone marrow, which tells the body to then make new, better, antibodies. And he felt that the monthly kept "stirring" the immune system. He said to us that 8 to 13% of the children will need a second IVIG, at the 1.5 dosage.

 

We just keep learning as we are going over here.........

 

Elizabeth

 

This all seems to confirm what Nevergiveup has been saying about needing high dose IVIG.

That would also suggest less, not more treatments overall.

 

Oh, cripes, that deductible comment from SF MOM is making me think we'll have to pay up to some degree, even when covered. Ah, well.

[FallingApart]

We are doing every 28 days at 1g/kg. But so far we haven't made it through a month without a major breakdown that required steroids. We are also learning a lot over here. I think there is a much higher degree of inflammation that we originally thought. But, now, what do we do with this knowledge???? Ugh...

[melanie]

We are doing every 28 days at 1g/kg. But so far we haven't made it through a month without a major breakdown that required steroids. We are also learning a lot over here. I think there is a much higher degree of inflammation that we originally thought. But, now, what do we do with this knowledge???? Ugh...

 

someone needs to show me proof that you need more than 1 mg per kg .I cant find anyone anywhere (MD) that is saying this.Who is using this and has had better results who??If anyone can foward this literature I would be greatful.Sticking my son every 21 days for no reason if its not the right dosage will make me very angry.

 

Melanie

[nevergiveup]

Melanie,

 

Swedo's original study was 2 grams, Dr K's 80 percent success rate is 1.5 grams. All autoimmune diseases treated by ivig are high dose. I am not sure what studies you refer to. All studies and data collected were from high dose. What study supports low dose for Pandas? What data do you think is out there, not many studies have been done on Pandas. Melanie who is your immunologist that is treating pandas? Ask him about his success rate, your son gets frequent ivig at a pretty high level so maybe this is sufficient. However the studies that were done were not monthly nor were they at this level.

 

We are doing every 28 days at 1g/kg. But so far we haven't made it through a month without a major breakdown that required steroids. We are also learning a lot over here. I think there is a much higher degree of inflammation that we originally thought. But, now, what do we do with this knowledge???? Ugh...

 

someone needs to show me proof that you need more than 1 mg per kg .I cant find anyone anywhere (MD) that is saying this.Who is using this and has had better results who??If anyone can foward this literature I would be greatful.Sticking my son every 21 days for no reason if its not the right dosage will make me very angry.

 

Melanie

[melanie]

Melanie,

 

Swedo's original study was 2 grams, Dr K's 80 percent success rate is 1.5 grams. All autoimmune diseases treated by ivig are high dose. I am not sure what studies you refer to. All studies and data collected were from high dose. What study supports low dose for Pandas? What data do you think is out there, not many studies have been done on Pandas. Melanie who is your immunologist that is treating pandas? Ask him about his success rate, your son gets frequent ivig at a pretty high level so maybe this is sufficient. However the studies that were done were not monthly nor were they at this level.

 

We are doing every 28 days at 1g/kg. But so far we haven't made it through a month without a major breakdown that required steroids. We are also learning a lot over here. I think there is a much higher degree of inflammation that we originally thought. But, now, what do we do with this knowledge???? Ugh...

 

someone needs to show me proof that you need more than 1 mg per kg .I cant find anyone anywhere (MD) that is saying this.Who is using this and has had better results who??If anyone can foward this literature I would be greatful.Sticking my son every 21 days for no reason if its not the right dosage will make me very angry.

 

Melanie

 

 

Dr T is dannys neurologist and Dr Junouchi at UNDMJ is his immunologist

 

Melanie

[TeamAidan]

Few additional questions on this - :

 

- Would monthly high dose IVIG (1.5g/kg) be warranted based on severity of case / symptoms and / or additional immune diagnoses? Our son, in addition to PANDAS, also has low serum IGG (CVID diagnoses).

 

- Would doing a monthly high dose (1.5g/kg) do more harm than good - e.g. "Stir Up the Immune System"?

 

- Dr. K indicates on his website that additional 1.5g/kg infusions can be given every 28 days. Now he seems to indicate that "waiting" and evaluating progress for 3 months is best. If warranted, additional infusions are given every 60 days thereafter. Is this the protocol that most are following?

 

- At what point / how would one determine if IVIG has been a failure and that PEX should be considered?

 

Any assistance and clarity is greatly appreciated!

[sf_mom]

Many kids have low IGGs in addition to PANDAs.... our twins are similar (below normal, our older son has LOW normal IGGs). Dr. K determines success of IVIG if the child responds after first treatment. So, if your child has improvement from the IVIG, the treatment should work. If you were to consult with him he'd tell you about 13% need a second treatment. I think he likes to wait the full 12 weeks after IVIG because it takes that amount of time for the immune system to heal itself and a full year for nerve damage.

 

Our son presented with mostly TICs and mild OCD. From what I understand, TICs can be harder to eradicate via IVIG. He was exposed to strep six weeks post first IVIG and we saw a steady decline and he was retreated at 8 weeks. We retreated again another 8 weeks later to essentially KNOCK it out of the park for the TICs. Currently, he has days where he seems to be 110% better in some areas and 98% better in others. He was re-exposed to strep two weeks ago and a new TIC appeared... blowing air through his nose and that appears mostly when he is tired. That with some occasional mood liability are his only symptom.

 

I think with low IGGs the best option would be to start with IVIG as PEX can deplete IGGs further..... but I would highly recommend you speak with a PANDAS expert first before making any decisions.

 

-Wendy