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IVIG advice please?


AmberM

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We just finished a 30 day steroid taper with my 3 1/2 yr old dd and saw some really big gains. She went from a 12 mos cognitive level to a 26 mos level in 2 weeks! OCD came down with certain behaviors but not all. Anxiety came down quite a bit as well. Her food related anxiety/ocd did not improve at all. Overall, we saw at least 50% improvement. We've decided to proceed with IVIG in hopes of seeing more progress. Our insurance denied us..... big surprise. Our DAN! recommended doing 3 infusions, each one 30 days apart at 1.5 mgs per kilo of body weight. I didn't think we could afford to do all 3 infusions so told the DAN! we could probably afford 2. I talked to the infusion center today and they said he sent the rx for 2mgs per kilo of body weight so the price was much higher than the estimate they quoted me. I thought it might have been a mistake and of course he's out for the day. I don't know if he upped the dose since we're only doing 2 infusions or what. I was wondering if other people are using this high of a dose? I'm concerned about the side effects.

 

Any help would be appreciated.

-Amber

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Hi, I don't really have any advice, but I can relate to what you are going through.

My dd5 is in a bad, bad way right now.

Antibx and ibuprofen are no longer 'taming' it.

Just had a 3 1/2 hour rage where she attacked (hitting, kicking, biting) everyone in the family/with horrid name calling, it was awful.

We are doing a steroid for the 1st time starting tomorrow (I was going to wait until Friday, but can't take this any longer. I am scared for her.)

We are going for IVIG. We have to pay cash.

One PANDAS Dr. I conferred with suggested 2.0

Our DAN! that treats PANDAS says 1.5

We cannot afford to do multiple IVIG's.

I am also wondering if we should go 2.0 the first one...

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I saw this on the web recently and sent this to another mom who is having trouble getting IVIG approval - click on the link and scroll down - near the bottom, you should see info something like this:

 

* GAMMAGARD Therapy Coding Guide

* GAMMAGARD Therapy Coding Guide

 

A handy reference sheet with suggested codes for GAMMAGARD LIQUID therapy, GAMMAGARD S/D therapy, and immune system disorders.

 

https://webforms.bax...mune/order.jspa

 

As for dosage, my dd11 had 2g/kg of Gammunex over a two day period in patient at Christmas when she was in severe exacerbation. Dr. B did 1.5g/kg Gammugard (same thing as Gammunex) three weeks ago and I understand we will be doing that again in one week at his infusion center - over a two day period.

 

My dd11 has CVID (Common Variable Immune Deficiency) also, so her case may be different, but my understanding is that 1.5g - 2g / kg is commonly used for IVIG in PANDAS kids.

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My understanding is that while Dr. K. does not believe that there is a clinical difference between using 1.5gm/kg or 2gm/kg, and reco's 1.5 as top dose due to minimizing side effects, the 2gm/kg seems to be the reco'd dose especially if there are tics. We did 1.75gm/kg for my son as first dose, he's doing amazingly well, thank heaven.

 

Also, I must put out there that we infuse IVIG in our awesome integrative medical practice in northern CA for the least amount of $$. We use the Gamunex unless there is a reason to use Gammagard (specific concerns about low IgA) and pass on the wholesale price! Also we charge minimal infusion costs for the 2-day infusion, out of simple compassion for the cause!! PM me if you'd like more info.

 

We also have had to pay cash for ivig, i don't know that we ever could have done it if i couldn't buy it wholesale! DS14 is 6feet tall and weighs in at 190lbs - that was 165 grams of IVIG, as in $12,000 just for the meds - wholesale. Unbelievable.

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I'm sorry you're going through such a rough time. I'm at the point that I'm willing to do just about anything to get some relief and it sounds like you're in the same boat. I just wanted to say that the first 9 days of our steroid taper were insane. My dd turned into the incredible hulk and just raged out of control. She didn't eat anything other that potato chips and applesauce for the first two weeks either. So just be prepared for insanity. But after those awful first days, things got really nice. Everyone around us was commenting on dd's progress. We stopped the steroids a little over a week ago and we're already seeing regression. :(

 

 

 

Hi, I don't really have any advice, but I can relate to what you are going through.

My dd5 is in a bad, bad way right now.

Antibx and ibuprofen are no longer 'taming' it.

Just had a 3 1/2 hour rage where she attacked (hitting, kicking, biting) everyone in the family/with horrid name calling, it was awful.

We are doing a steroid for the 1st time starting tomorrow (I was going to wait until Friday, but can't take this any longer. I am scared for her.)

We are going for IVIG. We have to pay cash.

One PANDAS Dr. I conferred with suggested 2.0

Our DAN! that treats PANDAS says 1.5

We cannot afford to do multiple IVIG's.

I am also wondering if we should go 2.0 the first one...

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Amy, thanks for the info. Were you able to see a lot of progress with just one IVIG for your son? My dd doesn't have tics. Her main issues are emotional lability, rages, anxiety, and ocd. She also lost all language at onset around 18mos of age. Because of the timing, everyone assumed autism so we've been treating it that way until recently when a dr. told us about PANDAS. We're not sure now if it's both or just PANDAS.

 

I would love to travel to Sonoma for IVIG but we're in such a bad situation right now. My dd will only sleep in her own crib in her own room. We also have a 6mos old baby that I'm nursing and dd wants nothing to do with him at this point. The car ride would be insane. I have big dreams of taking a trip with her though.......hopefully with some healing.

-Amber

 

 

My understanding is that while Dr. K. does not believe that there is a clinical difference between using 1.5gm/kg or 2gm/kg, and reco's 1.5 as top dose due to minimizing side effects, the 2gm/kg seems to be the reco'd dose especially if there are tics. We did 1.75gm/kg for my son as first dose, he's doing amazingly well, thank heaven.

 

Also, I must put out there that we infuse IVIG in our awesome integrative medical practice in northern CA for the least amount of $$. We use the Gamunex unless there is a reason to use Gammagard (specific concerns about low IgA) and pass on the wholesale price! Also we charge minimal infusion costs for the 2-day infusion, out of simple compassion for the cause!! PM me if you'd like more info.

 

We also have had to pay cash for ivig, i don't know that we ever could have done it if i couldn't buy it wholesale! DS14 is 6feet tall and weighs in at 190lbs - that was 165 grams of IVIG, as in $12,000 just for the meds - wholesale. Unbelievable.

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[i couldn't get the link to open. We were planning to do the infusion over one day.... is that a really bad idea? I'm worried about trying to keep my dd busy and she also has horrible veins. I worry that the nurse won't be able to find a vein on the second day and we'll only get half the therapy. We've been turned away from blood draws several times.

-Amber

 

quote name=browneyesmom' timestamp='1297908155' post='103794]

I saw this on the web recently and sent this to another mom who is having trouble getting IVIG approval - click on the link and scroll down - near the bottom, you should see info something like this:

 

* GAMMAGARD Therapy Coding Guide

* GAMMAGARD Therapy Coding Guide

 

A handy reference sheet with suggested codes for GAMMAGARD LIQUID therapy, GAMMAGARD S/D therapy, and immune system disorders.

 

https://webforms.bax...mune/order.jspa

 

As for dosage, my dd11 had 2g/kg of Gammunex over a two day period in patient at Christmas when she was in severe exacerbation. Dr. B did 1.5g/kg Gammugard (same thing as Gammunex) three weeks ago and I understand we will be doing that again in one week at his infusion center - over a two day period.

 

My dd11 has CVID (Common Variable Immune Deficiency) also, so her case may be different, but my understanding is that 1.5g - 2g / kg is commonly used for IVIG in PANDAS kids.

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Have you had a full amount of immune testing done, and evaluated by an immunologist who really knows what to look for (who understands PANDAS/) Many of the kids on this forum have been found to have either primary immune deficiency or specific immune deficiency, and both are frequently covered by insurance. The only thing is that you want to make certain that the word PANDAS has never been mentioned in your paperwork, because the insurance companies will fight you if it has (not that you can't win, but you will certainly have a fight on your hands.)

 

Keep in mind that many immunologists (particularly allergist/immunologists) do not understand the true impact of specific immune deficiency, and as such, they minimize it. That's why you need someone who knows what it all means.

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Have you had a full amount of immune testing done, and evaluated by an immunologist who really knows what to look for (who understands PANDAS/) Many of the kids on this forum have been found to have either primary immune deficiency or specific immune deficiency, and both are frequently covered by insurance. The only thing is that you want to make certain that the word PANDAS has never been mentioned in your paperwork, because the insurance companies will fight you if it has (not that you can't win, but you will certainly have a fight on your hands.)

 

Keep in mind that many immunologists (particularly allergist/immunologists) do not understand the true impact of specific immune deficiency, and as such, they minimize it. That's why you need someone who knows what it all means.

 

We have done immune panel work-ups (2x, last one within this month) and my daughters are all in range-I spent all last week trying (again) with my insurance company (HMO) and it is a CLOSED door. We have had grown cultures and blood draws on all the family here to check for carriers.

We feel like she has suffered untreated with this for so long- my DH refused to participate in the Yale study- so we are willing to pay cash, we are so worried about our girl. I don't know what else to do. Starting a steroid today.

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Amber,

 

The link is not working for me this morning either, but I tested it last night right after I posted and it worked fine - looks like there is a problem with the server or something... might want to try again later.

 

Tell the nurses that your daughter does not have good veins (they will see it themselves also) and ask if they can leave in the access overnight. She'll need to be somewhat careful with that arm, but they should be able to secure it so it's fine.

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Amy, thanks for the info. Were you able to see a lot of progress with just one IVIG for your son? My dd doesn't have tics. Her main issues are emotional lability, rages, anxiety, and ocd. She also lost all language at onset around 18mos of age. Because of the timing, everyone assumed autism so we've been treating it that way until recently when a dr. told us about PANDAS. We're not sure now if it's both or just PANDAS.

 

I would love to travel to Sonoma for IVIG but we're in such a bad situation right now. My dd will only sleep in her own crib in her own room. We also have a 6mos old baby that I'm nursing and dd wants nothing to do with him at this point. The car ride would be insane. I have big dreams of taking a trip with her though.......hopefully with some healing.

-Amber

 

HI AMBER

i'm so sorry its so hard.

we are so lucky that yes, my darling DS has has so much improvement in tics, ocd, anxiety, just mood so much better, and hopeful and sigh...positive. i did not have this much hope for the ivig, i have heard so much about that it doesn't always help tics and if it does, it can take months to see a difference. he saw improvement within the first week.

 

he is grieving, though, for the last 5 years of his life, we have had such deep talks about his feelings on missing so much life, and suffering in school and of course, missing his dad who couldn't take the heat and left.

 

of the kids we have treated with ivig, all except one has had tics. the other child had severe ocd/psych issues and has been on so many psych meds and even in psych hospitals. she was on 3 psych meds when she came in for the ivig, in september. she did say, during her infusion, that her (disabling) anxiety seemed to be much less, and her mom says she is doing so well, but they are terrified to take her off of her meds becuase of her history. she's been on and off of like 30 or 40 different psych meds in the past 8 years, before finding out she had pandas.

 

And just also, regarding doing the ivig in one day...its not reco'd. the reason is, is that its a huge volume of protein going directly into the blood stream, and possibly too much for her little kidneys to process. so 2 days would be right. I did talk to one dad, however, who said he had talked with someone about doing it for his young daughter in one day and found someone willing to do that. Given the most serious complication of ivig infusion is kidney failure, i don't think that risking it is worth it.

 

anyway, i'm sure you'll find a way through - and fyi - there's always benedryl for a car ride.

 

good luck with everything.

amy

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I should mention that when dd11 had it in one day, it was over an extended period of time and they titrated up slowly and gave her plenty of fluid. She had already had one HD IVIG infusion which she tolerated fine. Future infusions for her; however, WILL be over 2 days.

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We have done immune panel work-ups (2x, last one within this month) and my daughters are all in range-I spent all last week trying (again) with my insurance company (HMO) and it is a CLOSED door. We have had grown cultures and blood draws on all the family here to check for carriers.

We feel like she has suffered untreated with this for so long- my DH refused to participate in the Yale study- so we are willing to pay cash, we are so worried about our girl. I don't know what else to do. Starting a steroid today.

 

S, good luck with the steroid burst!!

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