IVIG Dosage PANDAS vs Prim Immun Def

[nevergiveup]

My daughter 4 months after IVIG had her IGG's drop off and is officially going to be treated for PID with monthly IVIG's. Doctors are throwing around dosage levels because PANDAS dosage is different than PID. They are interested in giving her a dose that would help both conditions without overwhelming her with side effects since it is every 4 weeks. For those who have multiple IVIG's can you let me know about what dosages worked best. Also can anyone comfort me and tell me that They have seen IVIG help tics????? It definately cured her OCD but the tics seemed very odd after IVIG? Thank you.

[ShaesMom]

My daughter 4 months after IVIG had her IGG's drop off and is officially going to be treated for PID with monthly IVIG's. Doctors are throwing around dosage levels because PANDAS dosage is different than PID. They are interested in giving her a dose that would help both conditions without overwhelming her with side effects since it is every 4 weeks. For those who have multiple IVIG's can you let me know about what dosages worked best. Also can anyone comfort me and tell me that They have seen IVIG help tics????? It definately cured her OCD but the tics seemed very odd after IVIG? Thank you.

 

Hi Nevergiveup-

 

My dd just finished her fourth round of IVIG on Thursday. She weighs 41 pounds and gets 10 grams of Gamunex. It was taking about 4 hours but we got it down to 3 this last time. YAH!

 

Are you working with an Immunologist? Other than what Dr. K recommends for the large two day dose I do not believe there is a protocol for treating PANDAS monthly with IVIG. What PID did they dx her with--CVID or Specific Antibody Deficiency? Which by the way, according to some longterm PIDDer's and for insurance purposes is the same disease. Does she have low IGG levels or did she fail the Pneumo titers test or all of the above? Are they planning on doing IVIG monthly for a trail period or indefinitely?

 

I feel that the dose my dd is receiving for her dx of CVID is significant. She only had a few minor vocal tics (which have disappeared) so I'm not really sure I can give you assurance regarding the tics. I can tell you that every month we have seen improvements. After round three we noticed that she finally started eating lunch at school and even began asking me to send more in her lunch box. She also did not complain of leg pain except two days prior to round four. She does not enjoy having the IV done but she has told me on several occasions that having IVIG makes her feel better. She has never complained or thrown a fit when the time has come near. In fact, last week when her legs were bothering her she said "thats okay-they'll stop hurting after I have IVIG."

 

She still has some minor anger issues and emotional labilty in the form of self doubting but we can usually put a stop to these pretty quickly. I'm afraid the anger issues may have become a habit and that we will have to "retrain" her as to what is appropriate.

 

Overall, we are very thankful that she is receiving monthly IVIG and I believe in my heart that we are doing the right thing for her.

 

If you contact the Immune Deficiency Foundation they will send you several publications on PIDD's and the treatments free of charge. They will also connect you with a Peer in your area to help answer questions. You can sign up for a weekly (?) email newsletter. 800-296-4433.

 

You may also want to go to IGLIVING.COM and sign up for there free monthly magazine. It is all about PIDD and IVIG. It is a very good magazine.

 

I don't remember how old your daughter is but you can get a free IVIG Play kit from Baxter Health. It is a really cute blue stuffed bear that comes with everything needed to pretend you are giving him IVIG. My dd and her brother love playing with it. I've posted the link before but I will find and PM you.

 

Good Luck!

 

Sam

[sf_mom]

I don't know how old or how long your daughter has been sick but our son's primary presentation was TICS and he had many. He only had Dr. K's two day IVIG treatment and he is very close to TIC free. He still blows on the back of his hands when he is tired and I hear an occasional cough.. '3 per day' but that is it. He is two week post treatment. I DO believe there is hope with TICs just keep attacking the bacteria with antibiotics and IVIG. We now believe he was sick for over 1 1/2 years when he was exposed to Scarlet Fever got sick but went undiagnosed.

[nevergiveup]

Thanks for the reply. Your daughter's dose is about half of what my daughter received for PANDAS (calculating body dose per Lb).I know they give lower doses for PIDD. Of course we would prefer this because her side effects from the higher dose were pretty severe. She would barely have recovered before the next IVIG if they give them every four weeks. To answer some of your questions, she has insufficent pnuemoccal titers, low IGG, low IGM, low subclass one, low C4 and an extremely high ANA. However the medical justification is low IGG and chronic infections over several years. A six month trial is the approach. Although her PANDAS is not part of this diagnosis the immunologists feels they may be related and wants to make sure her dose is sufficient. I do not think we will give her the pandas dose, probably more then the PIDD dose.

 

For anyone doing immun testing after IVIG test at 6 weeks post, and then test again about 20 weeks post. The IVIG can alter the true state of the immune system for that long.

 

 

Thanks again

 

My daughter 4 months after IVIG had her IGG's drop off and is officially going to be treated for PID with monthly IVIG's. Doctors are throwing around dosage levels because PANDAS dosage is different than PID. They are interested in giving her a dose that would help both conditions without overwhelming her with side effects since it is every 4 weeks. For those who have multiple IVIG's can you let me know about what dosages worked best. Also can anyone comfort me and tell me that They have seen IVIG help tics????? It definately cured her OCD but the tics seemed very odd after IVIG? Thank you.

 

Hi Nevergiveup-

 

My dd just finished her fourth round of IVIG on Thursday. She weighs 41 pounds and gets 10 grams of Gamunex. It was taking about 4 hours but we got it down to 3 this last time. YAH!

 

Are you working with an Immunologist? Other than what Dr. K recommends for the large two day dose I do not believe there is a protocol for treating PANDAS monthly with IVIG. What PID did they dx her with--CVID or Specific Antibody Deficiency? Which by the way, according to some longterm PIDDer's and for insurance purposes is the same disease. Does she have low IGG levels or did she fail the Pneumo titers test or all of the above? Are they planning on doing IVIG monthly for a trail period or indefinitely?

 

I feel that the dose my dd is receiving for her dx of CVID is significant. She only had a few minor vocal tics (which have disappeared) so I'm not really sure I can give you assurance regarding the tics. I can tell you that every month we have seen improvements. After round three we noticed that she finally started eating lunch at school and even began asking me to send more in her lunch box. She also did not complain of leg pain except two days prior to round four. She does not enjoy having the IV done but she has told me on several occasions that having IVIG makes her feel better. She has never complained or thrown a fit when the time has come near. In fact, last week when her legs were bothering her she said "thats okay-they'll stop hurting after I have IVIG."

 

She still has some minor anger issues and emotional labilty in the form of self doubting but we can usually put a stop to these pretty quickly. I'm afraid the anger issues may have become a habit and that we will have to "retrain" her as to what is appropriate.

 

Overall, we are very thankful that she is receiving monthly IVIG and I believe in my heart that we are doing the right thing for her.

 

If you contact the Immune Deficiency Foundation they will send you several publications on PIDD's and the treatments free of charge. They will also connect you with a Peer in your area to help answer questions. You can sign up for a weekly (?) email newsletter. 800-296-4433.

 

You may also want to go to IGLIVING.COM and sign up for there free monthly magazine. It is all about PIDD and IVIG. It is a very good magazine.

 

I don't remember how old your daughter is but you can get a free IVIG Play kit from Baxter Health. It is a really cute blue stuffed bear that comes with everything needed to pretend you are giving him IVIG. My dd and her brother love playing with it. I've posted the link before but I will find and PM you.

 

Good Luck!

 

Sam

[ShaesMom]

Thanks for the reply. Your daughter's dose is about half of what my daughter received for PANDAS (calculating body dose per Lb).I know they give lower doses for PIDD. Of course we would prefer this because her side effects from the higher dose were pretty severe. She would barely have recovered before the next IVIG if they give them every four weeks. To answer some of your questions, she has insufficent pnuemoccal titers, low IGG, low IGM, low subclass one, low C4 and an extremely high ANA. However the medical justification is low IGG and chronic infections over several years. A six month trial is the approach. Although her PANDAS is not part of this diagnosis the immunologists feels they may be related and wants to make sure her dose is sufficient. I do not think we will give her the pandas dose, probably more then the PIDD dose.

 

For anyone doing immun testing after IVIG test at 6 weeks post, and then test again about 20 weeks post. The IVIG can alter the true state of the immune system for that long.

 

 

Thanks again

 

 

We did the large two day in July and then followed it three weeks later with the PIDD dosage. My dd also had severe side effects after the large two day dose. She has done extremely well with the lower monthly doses.

 

Did your Immuno tell you to test after 6 weeks and again at 20? From what I've been told you should not retest the Ig levels or Pneumo titers until about three months after receiving IVIG to get an accurate result.

[nevergiveup]

Yes, my immunologist tested after 6 weeks, in some of the severest immune deficiencies they see the drop off that quick. But they did say that the IVIG can alter the immune system much longer. I think with the high dose she received we should have waited longer and saved ourselves two thousand dollars for the lab work. At the time my daughter was so sick we didn't want to miss a thing. So we were very careful and conservative. Are you also on a six month trial? Although this is not to treat PANDAS, fixing her compromised immune system will help her not get so many repetitive infections thereby lessoning her infection triggered OCD. Hopefully allowing time for her brain to heal. In the end I think this will help, and so does my father whom is not her physician but is an immunologist. He has only refferred a handful of patients to IVIG in his lifetime. He feels it is a very last case alternative. He has always been against her receiving IVIG but with her recent attack of pandas and her immune blood markers he feels this is serious enough to justify a 6 month trial. But again he is not her doctor, he lives thousands of miles away from us.

 

Thanks for the reply. Your daughter's dose is about half of what my daughter received for PANDAS (calculating body dose per Lb).I know they give lower doses for PIDD. Of course we would prefer this because her side effects from the higher dose were pretty severe. She would barely have recovered before the next IVIG if they give them every four weeks. To answer some of your questions, she has insufficent pnuemoccal titers, low IGG, low IGM, low subclass one, low C4 and an extremely high ANA. However the medical justification is low IGG and chronic infections over several years. A six month trial is the approach. Although her PANDAS is not part of this diagnosis the immunologists feels they may be related and wants to make sure her dose is sufficient. I do not think we will give her the pandas dose, probably more then the PIDD dose.

 

For anyone doing immun testing after IVIG test at 6 weeks post, and then test again about 20 weeks post. The IVIG can alter the true state of the immune system for that long.

 

 

Thanks again

 

 

We did the large two day in July and then followed it three weeks later with the PIDD dosage. My dd also had severe side effects after the large two day dose. She has done extremely well with the lower monthly doses.

 

Did your Immuno tell you to test after 6 weeks and again at 20? From what I've been told you should not retest the Ig levels or Pneumo titers until about three months after receiving IVIG to get an accurate result.

[ShaesMom]

Our Immuno told us we would do IVIG for two years and then retest.

 

Yes, my immunologist tested after 6 weeks, in some of the severest immune deficiencies they see the drop off that quick. But they did say that the IVIG can alter the immune system much longer. I think with the high dose she received we should have waited longer and saved ourselves two thousand dollars for the lab work. At the time my daughter was so sick we didn't want to miss a thing. So we were very careful and conservative. Are you also on a six month trial? Although this is not to treat PANDAS, fixing her compromised immune system will help her not get so many repetitive infections thereby lessoning her infection triggered OCD. Hopefully allowing time for her brain to heal. In the end I think this will help, and so does my father whom is not her physician but is an immunologist. He has only refferred a handful of patients to IVIG in his lifetime. He feels it is a very last case alternative. He has always been against her receiving IVIG but with her recent attack of pandas and her immune blood markers he feels this is serious enough to justify a 6 month trial. But again he is not her doctor, he lives thousands of miles away from us.

 

Thanks for the reply. Your daughter's dose is about half of what my daughter received for PANDAS (calculating body dose per Lb).I know they give lower doses for PIDD. Of course we would prefer this because her side effects from the higher dose were pretty severe. She would barely have recovered before the next IVIG if they give them every four weeks. To answer some of your questions, she has insufficent pnuemoccal titers, low IGG, low IGM, low subclass one, low C4 and an extremely high ANA. However the medical justification is low IGG and chronic infections over several years. A six month trial is the approach. Although her PANDAS is not part of this diagnosis the immunologists feels they may be related and wants to make sure her dose is sufficient. I do not think we will give her the pandas dose, probably more then the PIDD dose.

 

For anyone doing immun testing after IVIG test at 6 weeks post, and then test again about 20 weeks post. The IVIG can alter the true state of the immune system for that long.

 

 

Thanks again

 

 

We did the large two day in July and then followed it three weeks later with the PIDD dosage. My dd also had severe side effects after the large two day dose. She has done extremely well with the lower monthly doses.

 

Did your Immuno tell you to test after 6 weeks and again at 20? From what I've been told you should not retest the Ig levels or Pneumo titers until about three months after receiving IVIG to get an accurate result.