No to the increase of IVIG

[melanie]

Spoke with the md today about increasing the IV to 1.5 g for danny and she said not a good idea not safe and theres no proof ,even in swedos work that it cures pandas .(She has worked on her studies ).She has tons of patients on IVIG and has been an immunologist for 29 years etc etc bla bla bla.I trust her ,I hear what some of you are saying I understand the concept,but no is no.

Someone has mentioned about IVIG and bone marrow?WHo was that and what did that mean?

 

Melanie

[thereishope]

How is he doing now? He's on antibiotics right now in addition to monthly IVIG, correct?

[sf_mom]

Perhaps your Dr. would consult with one of the more noted 'PANDAS' Dr's that treats with IVIG to understand why they are using the higher dose.

 

I don't know what to say other than the proof is in the successes that are not currently written up in an article. If your son is not improving, I would NOT proceed further without getting an experts advice. Possibly take a break from the IVIG to see if further healing occurs (1 m.g./Kilogram might have been enough to shut down his bone marrow). We are seeing wonderful and continued improvement as we are further out from IVIG.

 

-Wendy

 

 

 

 

 

Spoke with the md today about increasing the IV to 1.5 g for danny and she said not a good idea not safe and theres no proof ,even in swedos work that it cures pandas .(She has worked on her studies ).She has tons of patients on IVIG and has been an immunologist for 29 years etc etc bla bla bla.I trust her ,I hear what some of you are saying I understand the concept,but no is no.

Someone has mentioned about IVIG and bone marrow?WHo was that and what did that mean?

 

Melanie

[nevergiveup]

Melanie,

 

Could you please let us know how Danny is doing? Did your immun say she sees monthly ivig help ocd and tics. I had an immune tell me that he sees improvement in this. Not cured though in his CVID patients. Your son is getting the ivig very frequently it may be doing the job at one gram since he gets it every three weeks. If she worked with Swedo why does she say the ivig didn't cure the kids. I know 80% had improvement. I guess cured is a different word.

[melanie]

Melanie,

 

Could you please let us know how Danny is doing? Did your immun say she sees monthly ivig help ocd and tics. I had an immune tell me that he sees improvement in this. Not cured though in his CVID patients. Your son is getting the ivig very frequently it may be doing the job at one gram since he gets it every three weeks. If she worked with Swedo why does she say the ivig didn't cure the kids. I know 80% had improvement. I guess cured is a different word.

 

 

Hi

 

Ok she also said IVIG has nothing to do with bone marrow

Danny is doing ok he gets IVIG every 21 days in our home with a nurse.He does great with the home infusions(the nurse comes over hooks him up and about 4-5 hrs later hes done.He did get headaches with the 1st 2 the last one went great no headaches .He also gets benadryl and solomedrol(sp) steroids) Prednisone 20 mg if needed after the infusion.

 

Anyway today wasnt such a great day he had a meltdown .They are few and far between .There are days when I feel like things are ammazing and other when I would like to isolate in my house.When hes home hes pretty good.He still has alot of intrusive thoughts,and curses when he hears stuttering .

 

So should i stop the IVIG ? Well I feel I still need to keep trying I trust dr J and I think if she thought that increasing the IVIG would make him better she would.I do have an appointment next thursday .

 

I know everone here wants to help I dont know what the right thing to do is only time will tell .

 

Melanie

[thereishope]

Did you ask if she would at least increase it one time to try, maybe not increasing it every month? Maybe she'd agree to one time. Nancy just posted on here recently about increasing her daughter's IVIG dosage. Here's the link to the info she gave....

 

http://www.latitudes.org/forums/index.php?showtopic=7479

[trggirl]

I would be concerned about her safety comment. Why does she think it is not safe? Did she say?

[momofgirls]

Melanie

This thread has me a little confused. Your immunologist believes your son has PANDAS and is treating with IVIG for that reason right? Or is she just treating an immune def? IVIG is used at high doses (above 1g/kg) for autoimmune diseases all the time. I am not an expert and am not sure I understand the bone marrow connection but I believe it is where the auto antibodies are produced. IVIG at high doses is know to have immunomodulating benefits. PANDAS, if one is a believer, would know that it is an autoimmune disease. I hope others with more information can add to this discussion. Maybe the monthly low dose will do just fine for your son and I hope so but am just confused about your doctor's remarks.

[sf_mom]

Maybe her Dr.'s comment regarding safety is in reference to them doing it at home and not in a surgical/hospital setting. 2 m.g./kilogram IVIG is used for many illnesses safely. To name a few: Kawasaki's, Pandas, Chronic Fatigue, Rheumatoid Arthritis, Dysgammaglobulinemia, etc.

 

 

 

 

 

I would be concerned about her safety comment. Why does she think it is not safe? Did she say?

[sf_mom]

These posts might be helpful in explaining.

 

http://www.latitudes.org/forums/index.php?showtopic=6967

[melanie]

I spend so much time confused Im not even sure I know what not confused is.He is being treated for Immune defiency.He has been dxed with pANDAS by 3 mds so far.I always get the same response its some kind of PANDAS.He also has ASD do this may complicate the whole mess.Hes also 15 almost 16,and has had pandas for going on 4 years easy.Our next IV is scheduled for good friday next week.I see her on Thursday.Ill ask again why maybe it is home infusion thats the issue I didnt even think of that. She works at UMDNJ she has access to whatever she needs.Hummm

 

Melanie

[EAMom]

Are they thinking the higher dose (1.5 or 2 gm/kg) would all be in one day??...'cause usually that's divided over 2 days? If you can get safely 1gm/kg at home in 1 day, why would it be unsafe to do a 2nd consecutive day of 0.5 or 1.0 gm/kg (so the total dose would be 1.5 or 2gm/kg) either at home or in a clinic?

 

Does the immunologist realize that Swedo used 2gm/kg total dose (divided over 2 days)? And not 1 gm/kg?

 

Can't Dr. T. rec. the higher dose? Or is "I've been an immunologist for 29 years" calling all the shots?

Edited March 24, 2010 by EAMom

[nevergiveup]

I like the way you think EAMom.

 

 

 

 

 

Are they thinking the higher dose (1.5 or 2 gm/kg) would all be in one day??...'cause usually that's divided over 2 days? If you can get safely 1gm/kg at home in 1 day, why would it be unsafe to do a 2nd consecutive day of 0.5 or 1.0 gm/kg (so the total dose would be 1.5 or 2gm/kg) either at home or in a clinic?

 

Does the immunologist realize that Swedo used 2gm/kg total dose (divided over 2 days)? And not 1 gm/kg?

 

Can't Dr. T. rec. the higher dose? Or is "I've been an immunologist for 29 years" calling all the shots?