Help with IVIG dose

[pathfinder]

I came knocking on this site about 7months ago and I thank you all for sharing your knowledge and compassion. My DS just turned 17 last month and doing better with PANDAS treatment than any other treatment we ever tried. ( what a difference last six months made in our family!)

With good advices from wise moms from this site I contacted Dr. K who then needed 3 blood tests done by local Dr before I can arrange phone consultation with him. I went my family Dr and neurologist who flatly refused ( did not believed in PANDAS) So I enlisted help from you guys for advice and momto2pandas (thank you) referred us to Dr who ordered necessary tests and beyond. I had phone consultation with Dr. K who advised us to go ahead with IVIG asap as per my son's age and his blood tests ( High ASO titer and High Mycoplasma P) but first he wanted steroid burst for my son but I had to put my son's problem aside ( for the first time in my life) as I had to deal with my mother's passing. Meanwhile I was contacted by Dr's office( who did blood test) and they ordered some more blood tests for my son and they were mainly immunoglobulin tests of which one of subclass (3) my son was deficient and others he was barely in normal range and high ASO titer again. Dr. ordered IVIG at which Anthem approved.

Now here are my question. My son received total of 40 grams of IVIG and it seems to be too low of amount to be considered as PANDAS protocol ( as per my own research from this site) It has been only 2days since IVIG but it was like nothing happened to him ---no side effect or should I say no effect what so ever so far. I called Dr's office and asked nurse what made them come up with this particular dose of IVIG and the answer was that it was recommended by hospital infusion center. I am at a loss??????? We are fighting against time as my son is moving into adulthood and PANDAS treatment option is running out as it is.

What are my options?

1) continue with 40 gram IVIG for 75 kg boy and look for improvement. Is it worth waiting for months of treatment at this dose?

2) start over with other Dr in S. Cal area who would accept insurance and would be willing to do high dose IVIG ( but Who?)

3) travel to Dr. B?? in this case do we need to start all over again with blood tests???

4) please give me your opinion.

 

My son is on Augmentin XL 1000x2 and doing great but I know he has some more distance to go before he can become the boy he used to be before this mysterious illness took him over.

Thank you

Edited August 12, 2010 by pathfinder

[melanie]

how much does he weigh??75lbs??

[pathfinder]

Sorry

He is around 170 pounds and 75kg

[Fixit]

I came knocking on this site about 7months ago and I thank you all for sharing your knowledge and compassion. My DS just turned 17 last month and doing better with PANDAS treatment than any other treatment we ever tried. ( what a difference last six months made in our family!)

With good advises from wise moms from this site I contacted Dr. K who then needed 3 blood tests done by local Dr before I can arrange phone consultation with him. I went my family Dr and neurologist who flatly refused ( did not believed in PANDAS) So i taped into you guys for advise and momto2pandas (thank you) referred us to Dr who He ordered necessary tests and beyond. I wish We had him as my son's pediatrician all those years when we were looking for an answer but I will not look back and regret. I had phone consultation with Dr. K who advised us to go ahead with IVIG asap as per my son's age and his blood tests ( High ASO titer and High Mycoplasma P) but first he wanted steroid burst for my son but I had to put my son's problem aside ( for the first time in my life) as I had to deal with my mother's passing. Meanwhile I was contacted by Dr's office( who did blood test) and they ordered some more blood tests for my son and they were mainly immunoglobulin tests of which one of subclass (3) my son was deficient and others he was barely in normal range and high ASO titer again. so Dr. ordered IVIG which Anthem approved.

Now here are my question. My son received total of 40 grams of IVIG and it seems to be too low of amount to be considered as PANDAS protocol ( as per my own research from this site) It has been only 2days since IVIG but it was like nothing happened to him ---no side effect or should I say no effect what so ever so far. I called Dr's office and asked nurse what made them come up with this particular dose of IVIG and the answer was that it was recommended by hospital infusion center. I am at lost??????? We are fighting against time as my son is moving into adulthood and PANDAS treatment option is running out as it is.

What are my options?

1) continue with 40 gram IVIG for 75 kg boy and look for improvement.

2) ask Dr to change his mind about IVIG dose ( I love this compassionate Dr but I have feeling it is going to take more than my words. He did not believed in steroid burst and did not believed in Dr. K protocol)

3) start over with somebody else who would accept insurance?

4)please give me your opinion.

 

My son is on Augmentin XL 1000x2 and doing great but I know he has way to go before he can become the person he use to be before this mysterious illness took him over.

Thank you

 

Do you not live in the US?..can you travel to one of the main docs to get help?

THis is just me...but i would make an appt with any doc who believes..and get approval for higher dose...

Dont' worry about school rigt now...this is just one year...you are fighting for his life time...if you need to take him out and home..i would do that and get his GED..

Also i think some docs will prescibe an ivig and you can do it local...there are centers you can check out and i don't think any of the good docs would let your child suffer if you couldn't afford to do it at their office...

[momaine]

Since your already working with Dr. K, can't you get him to do a phone consult with your prescribing doctor and tell him why the high dose is neccesary?

 

Angela

[pathfinder]

Since your already working with Dr. K, can't you get him to do a phone consult with your prescribing doctor and tell him why the high dose is neccesary?

 

Angela

 

When Dr. K ordered steroid burst, I took it to my son's Dr. for prescription but he did not agree with Dr. K regarding steroid burst protocol and it ended there--any chance of these two Drs working together ended as well.

Thank you for your help though

[EAMom]

I wouldn't bother with more low dose IVIG.

 

Dr. K. uses 1.5 gm/kg, so that would be about 112 gm for your son. Dr. Latimer uses 2gm/kg.

 

You have 2 choices:

 

 

Option 1 (finding a new doc)

I don't think it would be critical to find a local doc who accepts your insurance as you could pay out of pocket for the visit and I think insurance should still cover IVIG (but check to make sure). (I know people on this forum have paid out of pocket to see Dr. Latimer, but the IVIG or Plasmapheresis she orders are still paid for by insurance.)

 

Option 2 (stiking it out with current doc, but getting him to up the IVIG dose to 1.5gm/kg)

 

what made them come up with this particular dose of IVIG and the answer was that it was recommended by hospital infusion center

 

I would expect the hospital infusion center would know diddly about PANDAS. SHouldn't it be up to the MD to order the dose, and the infusion center it follow it? I think you should make another appt. with this doc and get the real story. Also, I would send Dr. K. a quick e-mail with an update, and then ask him if there is any advantage to doing the low dose IVIG, or should you just do 1.5gm/kg. THEN....when he e-mails a reply (of course saying to do 1.5gm/kg) you should take this e-mail with you to your appt. (evidence). Also bring in Swedo's IVIG study (which was also high dose, 1gm/kg a day over 2 days=2gm/kg total...more evidence). If he questions, ask him what studies he has to show that low dose is effective in PANDAS patients (there are none!). I would think (hope) he would be willing to listen, if he was willing to listen to Dr. K. on the lab tests.

[EAMom]

OMG...why do these docs have to act like such babies!

[EAMom]

Okay...alternate plan if you don't think this doc will listen to Dr. K.

 

Send Sue Swedo an e-mail (she answers once in a while). Keep it brief but explain that your son's situation. Ask if there is any evidence (or research) that low dose IVIG is beneficial, or is it better to stick with high dose (as in her NIMH study). If she answers, then that is another piece of EVIDENCE.

[EAMom]

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

 

 

UCLA is also possibility. Here's the thread http://www.latitudes.org/forums/index.php?showtopic=8899&start=0&p=74049&hl=ucla&fromsearch=1entry74049

Edited August 13, 2010 by EAMom

[peglem]

My guess would be the IVIG was ordered for immune deficiency (low IgG). My daughter's 1st 2 infusions were @ that dose and when I researched it, it seems that is standard for immune deficiency- the goal being to just normalize IgG levels. But, I agree w/ EAmom- I wouldn't bother if its not making any difference.

[EAMom]

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.)

[pathfinder]

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

 

 

UCLA is also possibility. Here's the thread http://www.latitudes.org/forums/index.php?showtopic=8899&start=0&p=74049&hl=ucla&fromsearch=1entry74049

 

 

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)

[EAMom]

keeping my fingeres crossed!

 

(I'm in Northern CA).

[momto2pandas]

Hi,

 

I happen to know this situation since we see the same pediatrician ("Dr. G") and we tried to get IVIG at the same hospital. Dr. G was willing to order a higher dose for us (the dose that Dr. B recommended) but neither the hospital nor the infusion center covered by our insurance would do it. It's against their safety protocols. He and his staff actually spent a lot of time trying to figure it out for us. Since Dr. G (the pediatrician) didn't have anywhere else to send us where he had privileges, we got stuck.

 

Dr. McGhee at UCLA knows PANDAS and has been willing to do higher doses with us -- I'm not sure how broad that willingness is. He might have been willing to go higher with us in part because we had had the high dose before at Dr. B's. However, my kids have been doing well on 0.75 mg/kg so I haven't had to push it. Even after they went off of antibiotics and got sick and started to relapse with a little bit of PANDAS symptoms, I thought that they would need 1.5 to "jump start" again and Dr. M was willing to do it, but they were so good after the first half of it (which Dr. M had predicted would be the case) that I canceled the second half. Amazingly, ds4 is healing from impetigo now (I think he got it during our trial off of antibiotics) and still has ZERO PANDAS symptoms. Ds6 seems to be reacting to his brother's infection just slightly - but I'm not even 100% sure. He just seems really tired and a bit crabby, nothing distinctly PANDAS.

 

Best of luck!