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IVIG Recommendations?


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No setbacks after Ivig with Pandas symptoms. She does occasionally have a headache about 48 hours later. Gamunex

 

Melanie,

 

What dosage did Danny get the first time, I believe it was this past summer when he was in the hospital?

 

 

Shaes mom, I couldn't tell from your response was it three weeks post or three months post the original dose did your dd start receiving the monnthly lower dose ivig? Also what brand of ivig does she receive? Does she have any small set back after doses, like one or two days of panda symptoms?

 

 

Danny does have a immune defiency,What if you have both PANDAS and ID?

Sorry Imsuch a pain

 

Melanie

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For those who have had IVIG's would you highly recommend it for others considering it?

 

I think this is a great question. I know IVIG is talked about a lot and I think I have quite possibly read every post on this site that comes up in a "search" regarding it. I believe we will be doing IVIG for our son in the not too distant future... in my head, I know it's what needs to be done... but I am so scared...

 

I'm sure some of this angst comes from a state of constant stress and compromised ability to pretty much handle anything at this point... but when reading Dr. K's website section on IVIG... I zero in on:

 

* Severe allergic reaction

* Aseptic meningitis

* Renal Toxicity (acute renal failure)

* Vascular Thrombosis

* Hyperviscosity Syndrome

 

I know it is ridiculous to do this, but it's like I am overcome with fear...

 

Dr. K's site also goes on to say:

“It appears however, that these complications may be directly related to the brand of IVIG used. Products where sugars (sucrose in particular) have been used as stabilizing agents may increase the likelihood of some of these rare complications.”

 

For the people who have done and/or are currently doing it... what is the best brand to use???

 

Thanks!

- Karen

 

Karen-

 

The side effects of IVIG do sound quite scary. You have to keep in mind that these are VERY rare and that IVIG is given daily around the world to patients with Immune Deficiencies, MS, and other diseases. The nurses at our infusion center are specifically trained to administer the meds and there is always a doctor in the facility. I have a friend whose son has been receiving IVIG for over five years without incidence.

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[Hi Guys

 

today hasnt been such a good day ,and yesterday wasnt that great either.Danny is soo ticccie and anxiety is so high.I can just about be near him for a minute.Im not sure if its the minocycline or the IVIG?He had his second dose last friday 2-19 and was on zith for a week .Than she switched him to minocycline I dont remember why Ill call monday.Also he is tired not real tired just tired.Everything you say hes ticing.Says hes hearing us stammer again.

 

The 1st IV he had in the summer was 1.?grams I dont know and I dont speak to that MD anymore.I was much happier after the 1st and 2nd IV.Im also interested in te brand of IVIG.Should I tell the MD I want gamaguard?Does it really matter that much?

 

Melanie

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So Laurenjohnsonsmom, you said definitely.. does that mean your dd had the IVIG and you see positive results already?

 

 

 

Without a doubt..absolutley! (1.5g/k or 2g/k over two days as I don't think you get the same good results at a lower dose).

 

For those who have had IVIG's would you highly recommend it for others considering it?

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melanie,

does your boy normally have days in between with no tics, or did you only start seeing tic free days after starting IVIG? I know you've gone back and forth with his symptoms, but are you seeing an overall more positive trend than before? its hard to gauge when things wax and wane, but I guess what I'm asking is,..has it been common for him to wane on tics or certain tics in the past even before IVIG?

 

 

Doug, yes, how is your little girl if you are reading? did she get over the flu after the IVIG without incident? is the ocd still good?

 

 

-Faith

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I saw no NO tics after the 1st IV for a few weeks which is why I pushed so hard to do it again.Since then the last 2 IVs i havent seen complete remission except for the leg twisting thats gone so I guess thats good. The problem we are having is the cursing.He hears us stammer when we talk and then he curses . I still cant find anyone who has this .His anxiety is ramping up again so I guess this is waxing and I know weve been having alot of good day so I guess thats the waining.I like that better.Hes definitly talking a ton more,typically about TV shows and stuff .His anger doesnt last as long .Im not sure when this is going to get all better I hope were on the right road.

 

 

Melanie

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Could you please let us know what dosage was used? Also how is your child now that you have stopped?

 

I think my kid is the exception here. We did 16 IVIG treatments and saw improvement around 5 or 6, then none after that. Around IVIG #12 his symptoms came back. We increased the dose for 4 more months and saw no changes at all so we stopped.
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Danny does have a immune defiency,What if you have both PANDAS and ID?

Sorry Imsuch a pain

 

Melanie

Dr K ROCKS!!!!

If you can get to him do it!!

we just had it done Feb 12&13

and I have seen some good signs

but I am holding my breathe

because I know the up's and down's

of PANDAS.

My daughter is 5

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Melanie,

 

We did the high dose a week and a half ago. We plan on waiting at least 3 months before we consider another one. I don't know if you will have to pay Dr. K's fee, maybe not if the contact is between your MD and his. Our pediatrician wrote him an email and he wrote her right back. We didn't pay any additional fees but we had recently paid for a 1/2 hour phone consult. The explanation I got for why low dose monthly doesn't work for PANDAS is that one, it isn't enough to turn off the immune system for a while which is necessary to change the autoimmune process, two, doing it too often is like aggravating a wound that is in the process of healing, and three, some of the antiboidies that get introduced through IVIG are the very ones that are causing the problem. That is why kids often flare initially before the improvements start. I do not want to present myself as some IVIG expert. But when it comes to PANDAS, I believe strongly after flailing around for a year that Dr K. is the undisputed PANDAS expert. Certainly possible that your MD, who I'm sure is fantastic, my hear his explanation and disagree. Most of alll, good luck and there is nothing I want more then for all our kids to get better.

 

Alex

Alex,

How are things since the IVIG? Any changes yet? Positive or negative? Which hospital did you go through and how was that experience?

Angela

Angela

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Alex,

How are things since the IVIG? Any changes yet? Positive or negative? Which hospital did you go through and how was that experience?

Angela

Angela

 

Hi Angela,

 

Things have been somewhat better but it is way too early to tell at this point where they are headed. I will send you a pm about our experience, etc.

 

Just wanted to address the whole issue of high or low dose IVIG again. I just wanted to emphasize that it is not my personal opinion that low dose monthly IVIG does not work for PANDAS. I am not that smart to have an opinion on it. It is Dr. K's opinion. When we spoke with him last month and told him that we were on the path of doing monthly low dose IVIG he was absolutely adamant that this was not the right approach for PANDAS. Because of our phone call and several others from families having poor success with monthly IVIG he called the doctor who was prescrbing it, himself a brilliant, talented and highly regarded immunologist and convinced him to change his protocol to a single or infrequent infusion of at least 1.5 g/kg of IVIG. Dr. K told me the reasons, but it is not my place to try to explain them, even though I did that poorly on a previous post.

 

The main point I would say is that Dr. K has treated more PANDAS patients then probably all other physicians in the country combined, 500 or more. He has a fantastic track record. Dr. T referred to him on this forum as the 'God of PANDAS' or something like that. And Dr. K says dont do low dose monthly IVIG. I am so glad that Shaesmom's child is having success with the low dose monthly IVIG, but from all I can tell, she is the exception. I just got a private message from a mom whose child was getting low dose monthly IVIG and is having a really hard time. They did a phone consult with Dr. K who advised them to wait at least 3 months before another infusion to let things settle down becasue doing it monthly is constantly stirring up the bad antibodies and not letting the healing take place, or something like that.

 

So, if your physician has treated a handful of PANDAS patients and says low dose monthly IVIG is the way to go, they are disregarding the one and only study done on IVIG for PANDAS, which used high dose to great success, and they are ignoring the approach of the Doctor who has done the most to advance the actual practice of treating PANDAS, Dr. K. (Dr. T will be right up with him someday I'm sure!!!) And the best part is, you can e-mail the man and he writes you back, and he will talk to your doctor if you want and they can hash it out. Maybe your doctor won't agree, who knows.

 

Good luck to all, Alex

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. Because of our phone call and several others from families having poor success with monthly IVIG he called the doctor who was prescrbing it, himself a brilliant, talented and highly regarded immunologist and convinced him to change his protocol to a single or infrequent infusion of at least 1.5 g/kg of IVIG. Dr. K told me the reasons, but it is not my place to try to explain them, even though I did that poorly on a previous post.

 

 

Was the other doctor Dr. Gupta at UCI?? If so I wish someone would have told him that before we paid out of pocket for 16 infusions. We're still paying for it and will be for a while.

 

I contacted Dr.K when this first started for us. My son also has autism. I got back a brief email saying something like a prednisone push usually indicates how well a child will respond to IVIG and with autistic kids the results are not always accurate for some reason. Kind of blew me off and didn't seem interested in taking on my son as a patient. So I had to go elsewhere. It's been the story of my life. I keep trying to do the right thing for my kid, spend tons of $$$ and always end up with the person/treatment protocol that doesn't work.

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