Help with IVIG dose

[Suzan]

Low dose can also make things worse. Read this post (3rd paragraph down, by Coco) http://www.latitudes.org/forums/index.php?showtopic=9474&pid=79511&start=&st=#entry79511

 

Peglem also had some article that said that low dose is inflammatory (which wouldn't be good for a PANDAS patient.)

 

Do you know, is anything under 1.5 considered low dose? Just wondering if the 1g/kg we are getting today is still considered low dose....

 

Susan

[EAMom]

Hmm. I'm not sure. I wonder if Peg's article says anything?

[nevergiveup]

Eamom, The right dose is key, but what that is for each child may differ somewhat. High good but not too high to create a massive immune response and fever. Too low will stop working pretty quickly. So I have been searching for literture to read so I better understand what my doc says. (She's one smart lady) She says that igg levels must be maintained above 1700 to substantially redirect the autoantibodies. She says this is the trough levels used for autoimmune dosage levels. For immune deficiency levels they do not want to see toughs below 700. Actually for subQ infusions they try to keep iggs at a steady state above 800.BUt for autoantibody diseases subQ immunoglobins won't work, and troughs need to be above 1700 at all times, only IVIG will do this. (Although my doc believes in the sialic acid helps stop production of autoantibodies, she also feels there is lots of evidence to suggect igg bonds to the autoantibodies and redirects them. So dosage is not based off size of dose but rather how fast u burn up those IGG's.) I know my dd drops down below The 1700 mark approx 7 or 8 days after 25 grams of ivig. So she needs lots more. Interesting enough that's when I start to see symptoms again. Also doc says half life of ivig is 21 days not 28, like many think and use. So I have read many articles that is takes approx. 48 hours to 72 hours for ivig to start to bond to antibodies. Which is about when each month I start to see my dd dramatically improve. Then one week of total symptom remission, and then after a slow accumulation of symptoms again until next dose. Do u know of any literature that documents the right trough levels for ivig and autoantibodies??? Maybe that's why Dr K says that the weeks 4 through 6 are so ruff becuz the igg's has dropped below levels sufficient to redirect the antibodies. Sorry if my writing is terribly confusing, but its all second hand info and I am trying to understand it better. Also some of the monthly cases like Coco and Keith and Elizabeth had special circumstances, Coco found out her dd had an IGA deficiency, maybe causing symptoms to worsen with ivig(she needed low iga product instead) and keith and elizabeth have lyme. ( This lyme stuff is very scary,)

Hmm. I'm not sure. I wonder if Peg's article says. Alsoanything?

[peglem]

subQ ?????

[nevergiveup]

Its an alternative to monthly IV IG , subQ weekly infusions. Great for immune deficiency but not for Pandas.

 

 

subQ ?????

[tapiash]

How about Dr. Lin from the helpful docs list?

You could try calling or e-mailing first and see if he ever orders high dose IVIG.

 

Thomas Lin, M.D.

UCLA Board Certified Pediatrician

Gave us a diagnosis when no one else could. Very friendly, easy to talk to, and seemed to know PANDAS quite well. His son is autistic and has OCD symptoms. Believes in infections other than strep causing issues too. No treatment protocol to post yet.

4634 Barranca Pkwy

Irvine, CA 92604

office: 949-681-0777

fax: 949-681-0788

www.irvinekidsmd.com

e-mail: autismmd@cox.net

 

We see Dr. Lin. He gives us 2 g but it is all in one day and not two like most doctors prescribe.

UCLA is also possibility. Here's the thread http://www.latitudes...h=1

 

 

EAMom

you are brilliant!!!!

Dr. Lin might be an answer for us as well as UCLA possibility.

Thank you so so much.

( I did not know you were from LA area but I learned so much from some of your posts and thank you do much for that)

[momto2pandas]

Is there any solid evidence that SubQ won't work in PANDAS? I ask because we're thinking about moving to it. I was scared of anything below 1.5 g based on the info on this board, but I have to say that my kids are at 100% now with 0.75 g/kg every 3 weeks (we expect this interval, unlike many here, because my kids have CVID [in one] and subclass deficiency close to CVID [in the other]). Their doctor follows their trough levels and I don't know what they are, but whatever they are, it's working. Based on this, we're thinking about moving to SubQ at an equivalent dose, for convenience and because it's supposed to be better protection against infection. So I am very interested to know if there is actually evidence suggesting that subQ is bad for PANDAS, or if that's just a guess. Our doctor treats quite a few PANDAS patients and he seems to think it's a good idea - that we have a better chance of eradicating and preventing new infections with strep if we keep the levels more steady.

 

I think it's a balance and may depend on whether a child's main issue is not being able to fight off infection, or having a massive autoimmune response to infection, even if they do fight it off. In our case, PANDAS was always fairly mild and my kids didn't have very high levels of autoantibodies (based on Cunningham, anyway); the problem was that the kids could NOT get rid of Strep so it became chronic. Maybe that's why as long as they're getting enough to keep infection at bay, they're good. For others with normal immunity but a big autoimmune response, the main effect may well be suppression of autoantibodies, which needs a higher dose.

[nevergiveup]

Right now according to my doc if u do infusions every 21 days they are getting probably enough igg to help with the autoimmune response. My dd has CVID and a subclass def also and she suffered from Chronic infection. SubQ according to my doc will not treat autoimmune diseases and is not recommended becuz of the lower IGG levels. Interesting though one of my docs fellows (residents) was pushing this idea on us(subq) before we saw her and she said absolutely not, it will not help autoimmune disease. Does ur doc have kids with pandas on subq? How are they doing? I can only speak on my docs experience with the immune system and autoantibodies. She is a leading expert at our Bone marrow transplant oncology division. Treats kids with immune defs and autoimmune disease also.Has multiple b cell drugs and chemo drugs like rituxan she uses on her kids. Is first doc in world to do gene alteration(therapy?) in children. I find her background and expertise in the immune system substancial. Since my dd has autoantibodies She clearly said subq will not be an option. I honestly find it very hard to doubt her knowledge, but this is a new disease and who knows? She has treated three kids with pandas, one from the original swedo study who is now in college doing well, in complete remission and off of ivig. (I know the mother) Maybe ur kids had their autoantibodies reduced due to the high dose, (this does happen for younger kids after high dose) now the lower dose is just to cover their CVID. Subq is suppose to be easier, u can do it for them at home (no home nurse), less sides effects and more stable igg levels. Having a proper immune response to infection may prevent the autoimmune response from reappearing?? But if pandas reappears u may need to do another high doseIVIG since subq will not help with the autoantibodies. If their trough levels now are dropping too low with ivig towards the end of the month, then yes subq may prevent more infection and maybe great. For me its the autoantibodies and I am told she must maintain igg levels above 1700 at all times. If u get a chance ask ur doc where this data is coming from and if he is familiar with this theory? Thanks! quote name='momto2pandas' date='13 August 2010 - 09:28 PM' timestamp='1281752938' post='79696']

Is there any solid evidence that SubQ won't work in PANDAS? I ask because we're thinking about moving to it. I was scared of anything below 1.5 g based on the info on this board, but I have to say that my kids are at 100% now with 0.75 g/kg every 3 weeks (we expect this interval, unlike many here, because my kids have CVID [in one] and subclass deficiency close to CVID [in the other]). Their doctor follows their trough levels and I don't know what they are, but whatever they are, it's working. Based on this, we're thinking about moving to SubQ at an equivalent dose, for convenience and because it's supposed to be better protection against infection. So I am very interested to know if there is actually evidence suggesting that subQ is bad for PANDAS, or if that's just a guess. Our doctor treats quite a few PANDAS patients and he seems to think it's a good idea - that we have a better chance of eradicating and preventing new infections with strep if we keep the levels more steady.

 

I think it's a balance and may depend on whether a child's main issue is not being able to fight off infection, or having a massive autoimmune response to infection, even if they do fight it off. In our case, PANDAS was always fairly mild and my kids didn't have very high levels of autoantibodies (based on Cunningham, anyway); the problem was that the kids could NOT get rid of Strep so it became chronic. Maybe that's why as long as they're getting enough to keep infection at bay, they're good. For others with normal immunity but a big autoimmune response, the main effect may well be suppression of autoantibodies, which needs a higher dose.

[danddd]

subQ, meaning sub-cutaneous ivig?

i have read about it a bit, but thought they did not do that in the u.s.

does anyone know why it is not good for pandas?

i thought it was just as effective, but the ammount used was less, and it has less side effects.

does anyone use that method for pandas?

 

thanks

danddd

[momto2pandas]

I did discuss with our doctor the idea of needing the peak levels to treat autoantibodies vs. the steady levels to better treat infection. He said that it's hard to tell what would happen if we switched - it depends on whether the main benefit they're getting out of it is keeping infection at bay or reducing autoantibodies. Like you said, I think it may be possible that the original 1.5 dose and/or the ongoing antibiotics are keeping down what was kind of a low level of autoantibodies to begin with. They are very young (4 and 6) and were treated quite early in the process, so that's possible. And then it's possible that most of what we're getting out of the IVIG now is protection from additional infection - so the subQ would actually be better for that. Ds4 does have impetigo now, so we're not getting optimal infection protection at this point (though he has ZERO PANDAS with that impetigo, interestingly.) Our doc said that the only way to know would be to try using a dose that would try to mimic what they're getting now, and then we would revert if we weren't happy. It's a real debate for us because we seem to have them at 100% now with PANDAS sx - they are due for their infusion this week and are still at 100% - so on the one hand I don't want to change anything, but on the other hand it sure would be nice for it to be more convenient and easier on the kids given that we're in for this for the long haul, and I do feel like we still have some room for improvement in getting my CVID kid fully protected.

 

I'll ask the doc when I see him this week if he has other PANDAS kids on subQ and how they're doing.

[nevergiveup]

Momtopandas, Sounds like subq maybe a very good way to go. I truly believe my dd's chronic infections put her immune system into autodrive. Ur kids are very very little, and they will have infusions for a long time. U can always go back to ivig if needed in future. I would definately give it a try, I could never do it though my dd's autoimmune blood markers show a serious ongoing autoimmune disease and we are still fighting to get her to 100 percent, we are close but not there yet. If she was 5, and this was her first attack, and she recovered, I would want to try subg to prevent infection.

I did discuss with our doctor the idea of needing the peak levels to treat autoantibodies vs. the steady levels to better treat infection. He said that it's hard to tell what would happen if we switched - it depends on whether the main benefit they're getting out of it is keeping infection at bay or reducing autoantibodies. Like you said, I think it may be possible that the original 1.5 dose and/or the ongoing antibiotics are keeping down what was kind of a low level of autoantibodies to begin with. They are very young (4 and 6) and were treated quite early in the process, so that's possible. And then it's possible that most of what we're getting out of the IVIG now is protection from additional infection - so the subQ would actually be better for that. Ds4 does have impetigo now, so we're not getting optimal infection protection at this point (though he has ZERO PANDAS with that impetigo, interestingly.) Our doc said that the only way to know would be to try using a dose that would try to mimic what they're getting now, and then we would revert if we weren't happy. It's a real debate for us because we seem to have them at 100% now with PANDAS sx - they are due for their infusion this week and are still at 100% - so on the one hand I don't want to change anything, but on the other hand it sure would be nice for it to be more convenient and easier on the kids given that we're in for this for the long haul, and I do feel like we still have some room for improvement in getting my CVID kid fully protected.

 

I'll ask the doc when I see him this week if he has other PANDAS kids on subQ and how they're doing.

[nevergiveup]

Momtopandas, Sounds like subq maybe a very good way to go. I truly believe my dd's chronic infections put her immune system into autodrive. Ur kids are very very little, and they will have infusions for a long time. U can always go back to ivig if needed in future. I would definately give it a try, I could never do it though my dd's autoimmune blood markers show a serious ongoing autoimmune disease and we are still fighting to get her to 100 percent, we are close but not there yet. If she was 5, and this was her first attack, and she recovered, I would want to try subg to prevent infection.

I did discuss with our doctor the idea of needing the peak levels to treat autoantibodies vs. the steady levels to better treat infection. He said that it's hard to tell what would happen if we switched - it depends on whether the main benefit they're getting out of it is keeping infection at bay or reducing autoantibodies. Like you said, I think it may be possible that the original 1.5 dose and/or the ongoing antibiotics are keeping down what was kind of a low level of autoantibodies to begin with. They are very young (4 and 6) and were treated quite early in the process, so that's possible. And then it's possible that most of what we're getting out of the IVIG now is protection from additional infection - so the subQ would actually be better for that. Ds4 does have impetigo now, so we're not getting optimal infection protection at this point (though he has ZERO PANDAS with that impetigo, interestingly.) Our doc said that the only way to know would be to try using a dose that would try to mimic what they're getting now, and then we would revert if we weren't happy. It's a real debate for us because we seem to have them at 100% now with PANDAS sx - they are due for their infusion this week and are still at 100% - so on the one hand I don't want to change anything, but on the other hand it sure would be nice for it to be more convenient and easier on the kids given that we're in for this for the long haul, and I do feel like we still have some room for improvement in getting my CVID kid fully protected.

 

I'll ask the doc when I see him this week if he has other PANDAS kids on subQ and how they're doing.