IVIG, How much and how often? We start next week!

[laurenjohnsonsmom]

Ok, so we start IVIG next week! I have had conversations with many parents that have recently did or are getting ready to start IVIG with thier children. There seems to be some "difference in opinion" between the docs (Latimer, Bouboulis, Dr. K, and others) as to how much, over how many days (one or two) and especially, how often.

 

This stresses me, immensely!

 

Please let me know what your personal experiences have been with IVIG.

[sf_mom]

This is Dr. K's recommendation

 

Recommended initial treatment with IVIG consists of administration of IVIG in the amount of 750 mg/kg/day for two consecutive days. Patients are admitted to an outpatient setting usually early in the morning and discharged upon completion of the treatment (expected duration of treatment is between 3 and 5 hours). If necessary, additional one-day treatments (1.5 grams/kg/day) can be administered in 28 days intervals thereafter.

 

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What we did 750 mg/kg/day for two consecutive days..... every 8 weeks. Corsa has had three treatments. I don't want to jinx anything by saying this is our last treatment but I feel like he is on the road to recovery. We are waiting it out this time past 12 weeks to see if his own immune system takes over. Dr. K has stressed the importance of the dose to me but I can not fully explain his reasoning as my memory is foggy. I think 'it has to do with shutting down the bone marrow, jump starting the antibodies that are made from the bone marrow. Its a direct ratio to the amount of blood in ones system.

 

Hopefully, I have said this all correctly.....

[Debbie1]

We have not yet done IVIG, but are considering it for our 12 year old daughter through Dr. B. Just wanted to wish you best of luck and much success. I hope to be hearing very positive updates!

 

By the way, I remember from a previous post that you were considering plasmapheresis followed up with IVIG. What happened with that?

 

Debbie

[reactive]

This is Dr. K's recommendation

 

Recommended initial treatment with IVIG consists of administration of IVIG in the amount of 750 mg/kg/day for two consecutive days. Patients are admitted to an outpatient setting usually early in the morning and discharged upon completion of the treatment (expected duration of treatment is between 3 and 5 hours). If necessary, additional one-day treatments (1.5 grams/kg/day) can be administered in 28 days intervals thereafter.

 

---------------------------------------

 

What we did 750 mg/kg/day for two consecutive days..... every 8 weeks. Corsa has had three treatments. I don't want to jinx anything by saying this is our last treatment but I feel like he is on the road to recovery. We are waiting it out this time past 12 weeks to see if his own immune system takes over. Dr. K has stressed the importance of the dose to me but I can not fully explain his reasoning as my memory is foggy. I think 'it has to do with shutting down the bone marrow, jump starting the antibodies that are made from the bone marrow. Its a direct ratio to the amount of blood in ones system.

 

Hopefully, I have said this all correctly.....

Question: I had read Dr. K's suggestion as above on his website. He also said by email the cost of IVIG can be $6,000 to $9,000 based on patient weight. I wonder if that cost is for the whole 2 day treatment or do I need to double that since it is 2 days. Also, why do some kids get one two day treatment and others have IVG every so many weeks?