Who makes the Rules on what really works?

[melanie]

Ive been dealing with PANDAS for quite some time,I have read so much most which I dont understand.I know PANDAS is not understood and theres still alot to learn but everyone seems to be doing different things.Its very confusing .

 

Danny is having IVIG treatments every 21 days with an immunologist who insists 1mg per kilo is enough and then I get information that he needs 2 mg per kilo??

 

Who aside from Dr K says that is fact??Who?? Dr T didnt tell us that.I read some info from Swedo she doesnt say that ,So who ,who is in charge here?

 

Dannys now taking Minocycline ,he was taking clindimicin with Dr T .

 

And where does Mycroplasm fit in .Dr T tested Danny for this and his numbers were very high.His Immunologist said this means he had HAD an infection in the past .Is this what caused PANDAS???

 

What antibiotics are going to get rid of an infection that he HAD not HAS?? Biaxin?

 

OMG !!

 

 

Danny is doing well much better than before IV.Is he cured ,no will he ever be ??I dont know because hes almost 16 and has had this for quite sometime,and the information is ever changing.

 

Thanks for letting me rant

 

Melanie

[EAMom]

I think sometimes Swedo makes the rules and sometimes it is Dr. K. and sometimes people just make them up randomly.

[MomWithOCDSon]

Unfortunately, I don't think ANYONE "makes the rules." There is no single protocol, no single definition, not even a single dosage for anything , whether it be IV or abx. And they wonder why we parents get frustrated and temperamental?!?!

 

Given everything I've read, honestly, Swedo is the last of the "experts" I would trust to have an accurate treatment response. I know she "birthed" PANDAS, but her stringent criteria and narrow breadth of study and experience in the trenches results in a too-quick dismissal, in my opinion. It would be terrific if she was more in tune with up-to-date experiences and trials, especially as she has the NIMH next to her name and title, and I think Diana P. and others are trying to bring her along and keep her informed, but it is a slow process.

 

Dr. K., I know, claims to have treated the greatest number of PANDAS patients (500+), and so he claims to have the most experience and the most knowledge as to what "cures" versus what doesn't "cure." But his protocols don't match up with Swedo, Latimer or Dr. T., and, thus far, Sammy Maloney's "cure" seems to stand alone in terms of and abx-only protocol (though I'm hoping that IS a viable answer for my son, I'll admit).

 

I think I've mentioned this before, but I'd like to lock all of these "experts" in a room and tell 'em to work it out/figure it out, and then come and treat our kids in a clear, understandable, logical, consistent way. Utopia!

 

Most of them will be at the AutismOne conference in May; what say we rope-a-dope 'em and get 'em to confer?! I'm only half-kidding, really.

[peglem]

Well, I'm worried, because Allie's immunologist will be using 400mg (less than .5g/kg) for IVIG every 3 weeks. He says we can always increase later if we have to. He's going by the guidelines for immunodeficiency (whose guidelines I don't know). Dr.L's report recommended 1g/kg. The IVIG nurse is trying to figure out how we're going to complete the IVIG and if we'll need anesthesia or not. I guess we'll just see how it goes.

On the + side- Allie has been doing ALOT better since her zith dose was upped at the end of December. Well, until yesterday when we had a surprise visit from 4 little kids...w/in hours of them leaving she started getting upset, screaming like she's in pain and just not feeling good. She's having clammy sweats and smashing her head on the wall when she gets fixated on things.

[kcdc3]

I know it is confusing. I get confused daily about all of this. I've been confused for 4 years, ever since this started. The best way to describe it is a roller coaster. There are days when I want to walk away and days where I have tremendous hope. Every doctor seems to say something different, but I just have to hang my hope on the possiblity that maybe something will be different "this time". I too, wondered about the Mycoplasma and how did you treat something that may have been in the past. I've googled IgG Mycoplasma 17 million different ways. (My daughter has positive IgG Mycop, but the IgM number is normal indicating not current but at least 3 months ago). The only thing I could come up with was this from LabCorp.....it says that the IgG number could be elevated and the IgM number be normal and explains that the IgM may not be there during a reinfection.

From LabCorp:

"Specific IgM antibodies may persist for several months after infection or be absent during reinfection."

So, if my understanding is correct, you can treat Mycoplasma based on the possibility that it may be still there since the IgM antibodies may not be there upon reinfection.

I've not dealt with the IVIG, so can not be of any assistance there.

All I can say for sure is I feel your pain!!!! Rant anytime you want - it's good sometimes for the rest of us to know we are not the only ones who feel that way.

[nevergiveup]

Scary huh? I absolutely agree. Who makes the rules? Melanie How are your docs measuring success? How will you know and when will you know if you are eliminating the problem antibodies? There are two ways I look at this, are you treating Danny's immune deficiency or his autoantibodies? Peglem, the same goes for you. My dd gets monthly infusions for her immune def at your dd's dosage. I have called multiple DANs across the country to see what success they have seen from regular ivig's and all state that the tics still remain. So according to Cunningham the theory is that autoantibodies in the childrens brains are causing the tics. Autoantibodies and immune deficiencies seem to be closely connected. I recently saw an expert on immune deficiencies and autoantibodies. This doc even has several studies going on analyzing these kids. (Not pandas kids, kids with immune def and lupus, or demylinating.) The fact is, that autoimmune disease is very hard to treat, and success is only seen with high dose ivig? (He said 2 grams) (This makes the bone marrow stops producing antibodies). Lower doses of ivig do not. My dd is healthier then ever on monthly ivig because she was always sick, always, but her tics remain. And actually so do her autoantibodies. We ran the cunningham tests and her antidopamine is highly elevated. This is my marker! I am asking for high dose ivig and then will retest cunningham to ensure these autoantibodies have been eliminated. After that point I think the docs would prefer subcutaneous immunoglobins which will keep my dd's globins at a more consistent range for her immune def and eliminate monthly infusions. The docs I have been talking with say autoimmune diseases are hard to eradicate. Bock has some kids on monthly and sees these kids better after four months but I believe he does the higher dose to start with. The idea is proof of autoantibodies and something to measure to ensure success. The immune doc felt the Cunninghams study could be the starting point. So I am pushing for a chance to do this by doing the 2 gram per kilo and then monitoring the cunningham autoantibodies to ensure they go down, and then over time more testing to ensure they don't start going back up again. If you have a marker to measure for sucess you may be more confident that your infusions are working. I would do the cunningham test again since he has had two doses to see if your dosage is high enough.

 

 

 

diseases).

Ive been dealing with PANDAS for quite some time,I have read so much most which I dont understand.I know PANDAS is not understood and theres still alot to learn but everyone seems to be doing different things.Its very confusing .

 

Danny is having IVIG treatments every 21 days with an immunologist who insists 1mg per kilo is enough and then I get information that he needs 2 mg per kilo??

 

Who aside from Dr K says that is fact??Who?? Dr T didnt tell us that.I read some info from Swedo she doesnt say that ,So who ,who is in charge here?

 

Dannys now taking Minocycline ,he was taking clindimicin with Dr T .

 

And where does Mycroplasm fit in .Dr T tested Danny for this and his numbers were very high.His Immunologist said this means he had HAD an infection in the past .Is this what caused PANDAS???

 

What antibiotics are going to get rid of an infection that he HAD not HAS?? Biaxin?

 

OMG !!

 

 

Danny is doing well much better than before IV.Is he cured ,no will he ever be ??I dont know because hes almost 16 and has had this for quite sometime,and the information is ever changing.

 

Thanks for letting me rant

 

Melanie

[melanie]

What is an antibody? How does this fit in. Couldnt I just trust that this MD who has been an immunologist for 34 years ,has written papers for Swedo knows when hes bettter?/ I want to rest I m real tired. Dannys tired.He need to have a better life ,friends and be able to go back and attend activities. My marker will be that when he can go back to life in general.I wish I had a more clinical education I wish I was a Pharmacy major or better yet an immunologist so all of this would make scence.(I also wish I was better at spelling).

 

Have a great day

 

melanie

[thereishope]

I think these kids are an unofficial experiment for everything. Now we just have to hope that these kids are documented somewhere so if and when they start studies they have an idea of where to start with what works and we don't have to wait 50 years for them to figure it out.

[nevergiveup]

Ok this is the kind of conversation that helps justify all those actions from the doctors who won't treat. The biggest concern is that if docs don't see results they will end trmt for all.

 

Who is this immunologist that worked with swedo, her studies did 2 grams not one monthly. Anyway, I guess the typical question that needs to be asked is how much succeSs are they seeing with monthly dosages. I have spoken to at least four docs whom are doing monthly dosages for kids with panda symptoms and they say that it has helped symptoms. But still see set backs at times.

 

Melanie, you threw out the idea what dosage works? The only markers avail are the cunningham tests and also aso, strep titers. Have you run the cunningham test? Why does your doc say one gram per kilogram. What is his rational? Or is this just the amount insurance will approve? Historically autoimmune diseases had a very poor success rate with ivig, almost to the point that it gave ivig a bad rap in the medical field, because it was spouted off as the cure all and later these diseases would come back stronger than ever. But recently immunologists and rheumotologists have gotten together and found great success for some autoimmune disease at high doses. The standard for these are 2 grams. This is the autoimmune disease standard. They are even now using it for ms which was never successful with ivig in the past 20 years. I am glad your son is getting help. But run the cunningham tests and run them again in 6 months, this may help you and your doc see if his markers are improving. Your son is getting a high dose and more frequently than most. Maybe its enough to alter his bone marrow production. But better success is seen at higher doses.

[peglem]

There are two ways I look at this, are you treating Danny's immune deficiency or his autoantibodies? Peglem, the same goes for you.

 

Here's what happened with me.

When we saw the immuno back in November, he would not dx her with immune deficiency- she has very low total IgG, IgG4 is deficient, low IgA and the pneumococcal titers (she was vaxed twice 2 1/2 years ago) were again low. But, he said if Dr. L recommended IVIG he would do that for us. So we saw Dr.L at the beginning of January. She recommended IVIG and I asked her to please recommend dosage as well. She recommended 1g/kg. So I brought her report to the immuno. He said no problem (we didn't discuss dosage at this time) we have a few PANDAS kids that we are treating already with IVIG. We can get approval for IVIG for PANDAS. So, a few weeks later, I talk with the IVIG nurse about getting it set up- and he says 400mg is what they usually give to treat immune deficiency and that its easier to get insurance to cover for HER IMMUNE DEFICIENCY! He (the nurse) asked the immuno about the higher, recommended dosage and was told that he's going with the standard dosage and we can always increase that if we need to.

Honestly it has been such an ordeal to finally get to the point where we're even getting IVIG...now to have to fight the dosage-I'm a bit deflated.

Is there research indicating the higher dosage is more appropriate? I'm not doubting that it is, just need the official word to support the case.

[sf_mom]

I did speak with Madeleine Cunningham about re-running CaM Kinase after IVIG and its best to do it 6 months post any treatment due to the fact that donor antibodies might have an impact on result.

 

Our son has had 3 IVIGs, every 8 weeks at 1.5 m.g. per kilogram. We have seen resolution in every area but mood liability and mild TICS. When he was re-exposed to strep two weeks ago we saw a huge increase in tics and had mild ocd for about 48 hours and then again for 24 hours a week later. Currently, he is symptomless in the mornings but towards bedtime we see some scrunching of his nose and blowing air through his nose. We hope this will resolve in time and their isn't a need for another treatment.

 

I think I is extremely important to remeasure CaM Kinase but unfortunately you might have to wait 6 months to 1 year to retest for an accurate result.

 

 

 

 

 

Ok this is the kind of conversation that helps justify all those actions from the doctors who won't treat. The biggest concern is that if docs don't see results they will end trmt for all.

 

Who is this immunologist that worked with swedo, her studies did 2 grams not one monthly. Anyway, I guess the typical question that needs to be asked is how much succeSs are they seeing with monthly dosages. I have spoken to at least four docs whom are doing monthly dosages for kids with panda symptoms and they say that it has helped symptoms. But still see set backs at times.

 

Melanie, you threw out the idea what dosage works? The only markers avail are the cunningham tests and also aso, strep titers. Have you run the cunningham test? Why does your doc say one gram per kilogram. What is his rational? Or is this just the amount insurance will approve? Historically autoimmune diseases had a very poor success rate with ivig, almost to the point that it gave ivig a bad rap in the medical field, because it was spouted off as the cure all and later these diseases would come back stronger than ever. But recently immunologists and rheumotologists have gotten together and found great success for some autoimmune disease at high doses. The standard for these are 2 grams. This is the autoimmune disease standard. They are even now using it for ms which was never successful with ivig in the past 20 years. I am glad your son is getting help. But run the cunningham tests and run them again in 6 months, this may help you and your doc see if his markers are improving. Your son is getting a high dose and more frequently than most. Maybe its enough to alter his bone marrow production. But better success is seen at higher doses.

[nevergiveup]

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.

[P_Mom]

My vote....crap shoot!

[fuelforall]

Scary huh? I absolutely agree. Who makes the rules? Melanie How are your docs measuring success? How will you know and when will you know if you are eliminating the problem antibodies? There are two ways I look at this, are you treating Danny's immune deficiency or his autoantibodies? Peglem, the same goes for you. My dd gets monthly infusions for her immune def at your dd's dosage. I have called multiple DANs across the country to see what success they have seen from regular ivig's and all state that the tics still remain. So according to Cunningham the theory is that autoantibodies in the childrens brains are causing the tics. Autoantibodies and immune deficiencies seem to be closely connected. I recently saw an expert on immune deficiencies and autoantibodies. This doc even has several studies going on analyzing these kids. (Not pandas kids, kids with immune def and lupus, or demylinating.) The fact is, that autoimmune disease is very hard to treat, and success is only seen with high dose ivig? (He said 2 grams) (This makes the bone marrow stops producing antibodies). Lower doses of ivig do not. My dd is healthier then ever on monthly ivig because she was always sick, always, but her tics remain. And actually so do her autoantibodies. We ran the cunningham tests and her antidopamine is highly elevated. This is my marker! I am asking for high dose ivig and then will retest cunningham to ensure these autoantibodies have been eliminated. After that point I think the docs would prefer subcutaneous immunoglobins which will keep my dd's globins at a more consistent range for her immune def and eliminate monthly infusions. The docs I have been talking with say autoimmune diseases are hard to eradicate. Bock has some kids on monthly and sees these kids better after four months but I believe he does the higher dose to start with. The idea is proof of autoantibodies and something to measure to ensure success. The immune doc felt the Cunninghams study could be the starting point. So I am pushing for a chance to do this by doing the 2 gram per kilo and then monitoring the cunningham autoantibodies to ensure they go down, and then over time more testing to ensure they don't start going back up again. If you have a marker to measure for sucess you may be more confident that your infusions are working. I would do the cunningham test again since he has had two doses to see if your dosage is high enough.

 

 

Yikes, don't source me on the Bock info, I just found out otherwise. I had thought he went with at least 1 g per kg but he doesn't. Bock does see improvement with sustained IVIG, that I know, but not all of them are PANDAS patients.

I certainly want to go with higher dosage now.

[fuelforall]

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