Who makes the Rules on what really works?

[peglem]

The other issue is that autoantibodies tend to be managed by rheumotology not immunology.

The rheumatologist would not touch this...referred us to Dr.L....

 

I can tell you the low dose ivig's have helped eliminate the ocd a lot.

 

This would actually be wonderful! So far, nobody even has been able to tell me if my daughter is having tics, chorea, or whatever movement disorder. They just can't evaluate her...but, I see the anxiety and getting stuck as more debilitating than the movements. She's pretty solidly in disability land, where you're allowed to jump up and do a jiggy dance for no particular reason, but if your anxiety and fears drive you to aggression you're still in real trouble.

[nevergiveup]

I know, I had the same thing with three different rheum docs. I had to find immun/rheum specialist combo.

I am confused as to why your doc won't treat the immune def without Dr L's consult and then does treat but ignores Dr "L's dosage. Insurance UHC will approve up to a gram for SAD.

 

I know you don't want to alienate your doc. Its a fine line. But maybe a second opionion from another immune doc, a researcher whom can eliminate the liability issue and offer expert advise.

[peglem]

SAD is what?

I can't for the life of me figure out where I would find a rheum/immune specialist...the trip to Dr.L sapped our resources- we'll be paying for that for years to come.

 

I'm weary...so tired of researching and searching and figuring out ways to convince people. I know this is temporary, and I'll get back to fighting soon.

[melanie]

SAD is what?

I can't for the life of me figure out where I would find a rheum/immune specialist...the trip to Dr.L sapped our resources- we'll be paying for that for years to come.

 

I'm weary...so tired of researching and searching and figuring out ways to convince people. I know this is temporary, and I'll get back to fighting soon.

 

I think its seasonal affective disorder(something like that)? I hear you Peg Im sick of tis too.I really would like to do some fun stuff like maybe a vacation.Some place warm ,its cold in NJ .Our MD is a immunologist ,shes pretty great Ill foward her name if you want it .Shes at UMDNJ in NJ and she takes lots of insurances .Oh and she also is VERY VERY familure with Autism so thats great.

 

Melanie

[trggirl]

Hey nevergiveup, are there are caveats to high dose IVIG? I mean, obviously your expert has not run into any danger problems doing it. WHat are the alleged problems with giving it at such high doses?

 

Michael

 

 

 

I would also love to know the answer to this question.

[peglem]

SAD is what?

I can't for the life of me figure out where I would find a rheum/immune specialist...the trip to Dr.L sapped our resources- we'll be paying for that for years to come.

 

I'm weary...so tired of researching and searching and figuring out ways to convince people. I know this is temporary, and I'll get back to fighting soon.

 

I think its seasonal affective disorder(something like that)? I hear you Peg Im sick of tis too.I really would like to do some fun stuff like maybe a vacation.Some place warm ,its cold in NJ .Our MD is a immunologist ,shes pretty great Ill foward her name if you want it .Shes at UMDNJ in NJ and she takes lots of insurances .Oh and she also is VERY VERY familure with Autism so thats great.

 

Melanie

Maybe in 10 or 15 years, when we've got the trip to MD paid off. I'm way out here in AZ. If we ever get Allie's health settled, I'm moving to Montana where I grew up (well, lived there as a child-I'm still working on the growing up!) and have family. My hobby, these days is to go on craig's list and look at MT real estate for sale...sad, eh? The last time our family went to Disneyland, Allie had a big, ragey meltdown in the middle of the fireworks crowd...now there's a story! I'd like to take her back sometime when she's better...try to give her back pieces of her childhood that have been stolen from us by this disorder.

[nevergiveup]

Peglem, Melanie,

 

SAD is selective antibody deficiency. Its when you vaccinate your child with the prenvar or pnuemoccal and they do not produce a response to the vaccine. Like Ally, it means not only does she have low iggs but the quality of these iggs are garbage, even more limiting her ability to fight infection.

 

Melanie, you asked who sets the dosage? I was just trying to help so you understood what high dose ivig is used for (autoimmune) and lower dose (immune def). Of course the dans have different protocols more like Danny's protocol. Danny already had high dose ivig and most likely is still benefitting from his first high dose infusion. Monthly after the high does is working well for Shaesmom' child.

 

Peglem, I don't understand why your doc after sending you out to see Dr L does not follow her dosage. I think its totally justified and insurance covers 1 gram per month for SAD which Allie has if she failed all her serotypes again after many vaccinations.

 

I wish we all could have a vacation. I am looking forward to one where I don't have any worries. I think you both have fought so hard and so long and maybe you should just try your docs protocols and see what happens. Hey, my immune guy said my dd's sky high ANA will not come down with ivig and it did after 5 years of not budging and two weeks after ivig it changed from speckled to centr. (2560 to 80) Unheard of said her docs. It has remained low now for 9 months and her ocd has improved 90 percent. She says she is a new child, all on low dose ivig. Her tics continue.

[peglem]

Allie has if she failed all her serotypes again after many vaccinations.

How long after pneumovax are the titers supposed to be at protective levels? The reason I ask is that Allie 1st had the pneumovax @ 2 1/2 years ago- the first time she had a poor response (less than 2-fold as compared to baseline). She was immediately revaxed and the second time showed an adequate response. When her titers were pulled again last Nov. , they were low again (but this time I would not revax)- but is that normal or should they still have been protective after that much time had passed? At any rate, her IgG that was already well below normal range 2 1/2 years ago- was even lower when checked last November.

 

Like Melanie, I am interested in studies (double blind would be nice) that show higher dose IVIG is more efficacious in autoimmune disease, just to bring with me when we eventually have "the discussion" about dosage. I know swedo used 2g/kg, but she didn't compare that to results of a lesser dosage, and I don't remember her giving a rationale for that dose (maybe I need to revisit the paper). And Dr. K hasn't published on this issue, has he?

[nevergiveup]

Your immunologist should be very familiar with ivig used for guillian barre, ADEM, and other autoimmune skin diseases. I do not think he will argue this point, that high dose ivig is used in autoimmune diseases. He sure won't tell you that low dose is used successfully in autoimmune diseases. Just ask. Also did Allie produce any serotype above two when you retested her pneumoccocal iggs? If she has no response now after 2 vaccines I would say that should be sufficient.

 

Allie has if she failed all her serotypes again after many vaccinations.

How long after pneumovax are the titers supposed to be at protective levels? The reason I ask is that Allie 1st had the pneumovax @ 2 1/2 years ago- the first time she had a poor response (less than 2-fold as compared to baseline). She was immediately revaxed and the second time showed an adequate response. When her titers were pulled again last Nov. , they were low again (but this time I would not revax)- but is that normal or should they still have been protective after that much time had passed? At any rate, her IgG that was already well below normal range 2 1/2 years ago- was even lower when checked last November.

 

Like Melanie, I am interested in studies (double blind would be nice) that show higher dose IVIG is more efficacious in autoimmune disease, just to bring with me when we eventually have "the discussion" about dosage. I know swedo used 2g/kg, but she didn't compare that to results of a lesser dosage, and I don't remember her giving a rationale for that dose (maybe I need to revisit the paper). And Dr. K hasn't published on this issue, has he?

[peglem]

Also did Allie produce any serotype above two when you retested her pneumoccocal iggs?

Yes, 5 out of the 14 tested were >2.

 

Your immunologist should be very familiar with ivig used for guillian barre, ADEM, and other autoimmune skin diseases. I do not think he will argue this point, that high dose ivig is used in autoimmune diseases. He sure won't tell you that low dose is used successfully in autoimmune diseases.

 

Thank you! I will talk to him about it.

[laurenjohnsonsmom]

1.5g/k over two days has been proven effective by many doctors, (Dr. K, Dr. B, Dr. Swedo and many more of the "less-than-talked about" PANDAS doc's). I have been told this personally by many of these doc's. IVIG is used in many auto-immune disorders with great success.

 

It is ONLY my opinion that anything lower than 1.5 is not very effective, long term. You might find success with many more frequent treatments but not the same as the high-dose treatments. You can do 2g/k, over two days (that is what Latimer does at Georgetown) but it is done in the Hemo/oncology dept, under careful supervision. There is relativley low risk with IVIG but your risk of complications do rise with the rise in dosage and how fast it is administered.

 

I know there has been other threads that talk about this same subject recently, somewhere..

 

 

Peglem,

 

There is no data that shows low monthly doses are helpful to pandas. However swedos study and Dr K's experience both support high dose. So do other successes with autoantibodies and ivig. Allie has an immune def and this dose will help, but your immune doc is behind on the science of immune deficiency. If your dd has low IGG's and failed pneumoccal then not only does she have low immunoglobins she also makes bad igg's that don't work right. Her B cells are probably not being made right to ever fight polysaccharoid antibodies. With both low igg and SAD, recommended doses are usually NOW around 1 gram per kg every 3 to four weeks. I think you need to go to your university or medical center with the BEST immune doc. She needs her IGG levels monitored with ivig and determined how she "metabolizes" the IVIG. I was told by one of the leading researcher in immune def , that my dd's levels should never drop below 800. But for autoantibodies, and if I remember correctly Allie scored high on those from the cunningham test, these are eliminated by high dose Ivig which then alters the bone marrow production of antibodies. Basically you are overloading the system so much that the bone marrow stops making antibodies because it doesn't need anymore. Hence no more antilyanglosides or dopamine one. Two different diseases, although related. Because kids with immune def's tend to make autoantibodies. I believe its all B cell related. If you cannot fight infection right then sometimes the immune system overproduces other bad antibodies to try and compensate for the deficit. Once this is triggered and goes on for a long period its hard to stop. The immune system keeps making them. High dose ivig may stop this production, temporarily. Autoimmune diseases are hard to cure. Do you know many people who are cured from RA, LUPUS, MS. They go into remission yes, but cured is another story. So who to believe, I think the science for autoimmune disease and ivig is more clear now, with high dose ivig. One question that seems to be still questioned is whether or not pandas is truly an autoimmune disease. Hopkins still feels that pandas is not. What does your immun doc think? The other issue is that autoantibodies tend to be managed by rheumotology not immunology. The experts I have seen have a specialty in both and feel they are connected. Melanie and Peglem, I have fought hard to get my dd the ivig like both of you. And now I find out high dose is probably the best possibility of altering her immune production of antibodies. (For the last 5 years). Honestly, after seeing countless docs like you all, Swedo, SFMOM, Buster, CoCo and Dr K their protocol seems to make the most scientific sense. And the physicians in my family agree. I can tell you the low dose ivig's have helped eliminate the ocd a lot. But not the movement disorder.

[nevergiveup]

Laurenjohnsonsmom,

 

Swedo did the 2 gr over two days. When did she study the 1. 5 grams. And latimer only gave my kid one gram in one day.

 

 

1.5g/k over two days has been proven effective by many doctors, (Dr. K, Dr. B, Dr. Swedo and many more of the "less-than-talked about" PANDAS doc's). I have been told this personally by many of these doc's. IVIG is used in many auto-immune disorders with great success.

 

It is ONLY my opinion that anything lower than 1.5 is not very effective, long term. You might find success with many more frequent treatments but not the same as the high-dose treatments. You can do 2g/k, over two days (that is what Latimer does at Georgetown) but it is done in the Hemo/oncology dept, under careful supervision. There is relativley low risk with IVIG but your risk of complications do rise with the rise in dosage and how fast it is administered.

 

I know there has been other threads that talk about this same subject recently, somewhere..

 

 

Peglem,

 

There is no data that shows low monthly doses are helpful to pandas. However swedos study and Dr K's experience both support high dose. So do other successes with autoantibodies and ivig. Allie has an immune def and this dose will help, but your immune doc is behind on the science of immune deficiency. If your dd has low IGG's and failed pneumoccal then not only does she have low immunoglobins she also makes bad igg's that don't work right. Her B cells are probably not being made right to ever fight polysaccharoid antibodies. With both low igg and SAD, recommended doses are usually NOW around 1 gram per kg every 3 to four weeks. I think you need to go to your university or medical center with the BEST immune doc. She needs her IGG levels monitored with ivig and determined how she "metabolizes" the IVIG. I was told by one of the leading researcher in immune def , that my dd's levels should never drop below 800. But for autoantibodies, and if I remember correctly Allie scored high on those from the cunningham test, these are eliminated by high dose Ivig which then alters the bone marrow production of antibodies. Basically you are overloading the system so much that the bone marrow stops making antibodies because it doesn't need anymore. Hence no more antilyanglosides or dopamine one. Two different diseases, although related. Because kids with immune def's tend to make autoantibodies. I believe its all B cell related. If you cannot fight infection right then sometimes the immune system overproduces other bad antibodies to try and compensate for the deficit. Once this is triggered and goes on for a long period its hard to stop. The immune system keeps making them. High dose ivig may stop this production, temporarily. Autoimmune diseases are hard to cure. Do you know many people who are cured from RA, LUPUS, MS. They go into remission yes, but cured is another story. So who to believe, I think the science for autoimmune disease and ivig is more clear now, with high dose ivig. One question that seems to be still questioned is whether or not pandas is truly an autoimmune disease. Hopkins still feels that pandas is not. What does your immun doc think? The other issue is that autoantibodies tend to be managed by rheumotology not immunology. The experts I have seen have a specialty in both and feel they are connected. Melanie and Peglem, I have fought hard to get my dd the ivig like both of you. And now I find out high dose is probably the best possibility of altering her immune production of antibodies. (For the last 5 years). Honestly, after seeing countless docs like you all, Swedo, SFMOM, Buster, CoCo and Dr K their protocol seems to make the most scientific sense. And the physicians in my family agree. I can tell you the low dose ivig's have helped eliminate the ocd a lot. But not the movement disorder.

[laurenjohnsonsmom]

My comment was refering to the doc's concuring that 1.5g/g seems to effective based on what they are seeing from the kids getting this dose, recently. I believe that is the dose they plan on using in the upcoming ivig study. The hemo oncology doc's at Georgetown who administer Latimer's IVIG told me that they do 1g/k a day, for everyone. So if she had you only do it for one day instead of two, that would make sense.

 

Do you mind if I ask why you only did it for one day? How long ago did you have it done? Seems like the "trend" is leaning towards 1.5g/k over two days but some doc's, until recently were giving a little less but more often.

 

Laurenjohnsonsmom,

 

Swedo did the 2 gr over two days. When did she study the 1. 5 grams. And latimer only gave my kid one gram in one day.

 

 

1.5g/k over two days has been proven effective by many doctors, (Dr. K, Dr. B, Dr. Swedo and many more of the "less-than-talked about" PANDAS doc's). I have been told this personally by many of these doc's. IVIG is used in many auto-immune disorders with great success.

 

It is ONLY my opinion that anything lower than 1.5 is not very effective, long term. You might find success with many more frequent treatments but not the same as the high-dose treatments. You can do 2g/k, over two days (that is what Latimer does at Georgetown) but it is done in the Hemo/oncology dept, under careful supervision. There is relativley low risk with IVIG but your risk of complications do rise with the rise in dosage and how fast it is administered.

 

I know there has been other threads that talk about this same subject recently, somewhere..

 

 

Peglem,

 

There is no data that shows low monthly doses are helpful to pandas. However swedos study and Dr K's experience both support high dose. So do other successes with autoantibodies and ivig. Allie has an immune def and this dose will help, but your immune doc is behind on the science of immune deficiency. If your dd has low IGG's and failed pneumoccal then not only does she have low immunoglobins she also makes bad igg's that don't work right. Her B cells are probably not being made right to ever fight polysaccharoid antibodies. With both low igg and SAD, recommended doses are usually NOW around 1 gram per kg every 3 to four weeks. I think you need to go to your university or medical center with the BEST immune doc. She needs her IGG levels monitored with ivig and determined how she "metabolizes" the IVIG. I was told by one of the leading researcher in immune def , that my dd's levels should never drop below 800. But for autoantibodies, and if I remember correctly Allie scored high on those from the cunningham test, these are eliminated by high dose Ivig which then alters the bone marrow production of antibodies. Basically you are overloading the system so much that the bone marrow stops making antibodies because it doesn't need anymore. Hence no more antilyanglosides or dopamine one. Two different diseases, although related. Because kids with immune def's tend to make autoantibodies. I believe its all B cell related. If you cannot fight infection right then sometimes the immune system overproduces other bad antibodies to try and compensate for the deficit. Once this is triggered and goes on for a long period its hard to stop. The immune system keeps making them. High dose ivig may stop this production, temporarily. Autoimmune diseases are hard to cure. Do you know many people who are cured from RA, LUPUS, MS. They go into remission yes, but cured is another story. So who to believe, I think the science for autoimmune disease and ivig is more clear now, with high dose ivig. One question that seems to be still questioned is whether or not pandas is truly an autoimmune disease. Hopkins still feels that pandas is not. What does your immun doc think? The other issue is that autoantibodies tend to be managed by rheumotology not immunology. The experts I have seen have a specialty in both and feel they are connected. Melanie and Peglem, I have fought hard to get my dd the ivig like both of you. And now I find out high dose is probably the best possibility of altering her immune production of antibodies. (For the last 5 years). Honestly, after seeing countless docs like you all, Swedo, SFMOM, Buster, CoCo and Dr K their protocol seems to make the most scientific sense. And the physicians in my family agree. I can tell you the low dose ivig's have helped eliminate the ocd a lot. But not the movement disorder.

[nevergiveup]

We had our ivig done on a friday and no docs were in for ivig on saturday. Honestly I feel there was a screw up. Somehow I think she was suppose to get 1.5 in one day and georgetown messed up the order. Dr L said we would load her up that kids handle that better than adults since we only had one day. So by Tuesday (during followup)when we saw Latimer we asked about the dosage and she said something about body fat versus muscle and felt the dose was sufficient. So I am now on a mission to determine the right dose. And after seeing an expert in autoantibodies and immune deficiencies, whom has done previous studies on sydehams chorea, he said in autoimmune diseases you have to alter the production of the antibodies by shutting down the bone marrow and this is done through very high dose ivig. In severe autoimmune disease you just dose them up every three weeks with 2 grams so they never make the bad antibodies again. Thats for kids whom are sick and potentially risk death from their autoimmune condition. (Not pandas) He also said he never had any luck getting the sydehams chorea antibodies out of the brains, said they stick like glue. But that study was done some 30 years ago, he was very impressed with cunninghams autoantibodies she has isolated and is measuring. I will post more info soon, we did lots of test and have a followup soon. Laurenjohnsonsmom, why does Dr. T not do ivig? Does he support the higher dosages?

Has your dd had ivig yet? Is your husband Doug on the site? How is she doing?

 

L

 

 

 

 

My comment was refering to the doc's concuring that 1.5g/g seems to effective based on what they are seeing from the kids getting this dose, recently. I believe that is the dose they plan on using in the upcoming ivig study. The hemo oncology doc's at Georgetown who administer Latimer's IVIG told me that they do 1g/k a day, for everyone. So if she had you only do it for one day instead of two, that would make sense.

 

Do you mind if I ask why you only did it for one day? How long ago did you have it done? Seems like the "trend" is leaning towards 1.5g/k over two days but some doc's, until recently were giving a little less but more often.

 

Laurenjohnsonsmom,

 

Swedo did the 2 gr over two days. When did she study the 1. 5 grams. And latimer only gave my kid one gram in one day.

 

 

1.5g/k over two days has been proven effective by many doctors, (Dr. K, Dr. B, Dr. Swedo and many more of the "less-than-talked about" PANDAS doc's). I have been told this personally by many of these doc's. IVIG is used in many auto-immune disorders with great success.

 

It is ONLY my opinion that anything lower than 1.5 is not very effective, long term. You might find success with many more frequent treatments but not the same as the high-dose treatments. You can do 2g/k, over two days (that is what Latimer does at Georgetown) but it is done in the Hemo/oncology dept, under careful supervision. There is relativley low risk with IVIG but your risk of complications do rise with the rise in dosage and how fast it is administered.

 

I know there has been other threads that talk about this same subject recently, somewhere..

 

 

Peglem,

 

There is no data that shows low monthly doses are helpful to pandas. However swedos study and Dr K's experience both support high dose. So do other successes with autoantibodies and ivig. Allie has an immune def and this dose will help, but your immune doc is behind on the science of immune deficiency. If your dd has low IGG's and failed pneumoccal then not only does she have low immunoglobins she also makes bad igg's that don't work right. Her B cells are probably not being made right to ever fight polysaccharoid antibodies. With both low igg and SAD, recommended doses are usually NOW around 1 gram per kg every 3 to four weeks. I think you need to go to your university or medical center with the BEST immune doc. She needs her IGG levels monitored with ivig and determined how she "metabolizes" the IVIG. I was told by one of the leading researcher in immune def , that my dd's levels should never drop below 800. But for autoantibodies, and if I remember correctly Allie scored high on those from the cunningham test, these are eliminated by high dose Ivig which then alters the bone marrow production of antibodies. Basically you are overloading the system so much that the bone marrow stops making antibodies because it doesn't need anymore. Hence no more antilyanglosides or dopamine one. Two different diseases, although related. Because kids with immune def's tend to make autoantibodies. I believe its all B cell related. If you cannot fight infection right then sometimes the immune system overproduces other bad antibodies to try and compensate for the deficit. Once this is triggered and goes on for a long period its hard to stop. The immune system keeps making them. High dose ivig may stop this production, temporarily. Autoimmune diseases are hard to cure. Do you know many people who are cured from RA, LUPUS, MS. They go into remission yes, but cured is another story. So who to believe, I think the science for autoimmune disease and ivig is more clear now, with high dose ivig. One question that seems to be still questioned is whether or not pandas is truly an autoimmune disease. Hopkins still feels that pandas is not. What does your immun doc think? The other issue is that autoantibodies tend to be managed by rheumotology not immunology. The experts I have seen have a specialty in both and feel they are connected. Melanie and Peglem, I have fought hard to get my dd the ivig like both of you. And now I find out high dose is probably the best possibility of altering her immune production of antibodies. (For the last 5 years). Honestly, after seeing countless docs like you all, Swedo, SFMOM, Buster, CoCo and Dr K their protocol seems to make the most scientific sense. And the physicians in my family agree. I can tell you the low dose ivig's have helped eliminate the ocd a lot. But not the movement disorder.