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ktdommer

18 year old son did first IVIG... Question

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Yesterday my youngest with Lyme and PANS did his first IVIG treatment. He did well with only a slight headache. Today he says he feels no different. He is approved by insurance for 5 more treatments- one a month

I have read everything I can about IVIG, and I think what it comes down to is that everyone responds differently. I want some clear cut prognosis and I don't think I'm going to get it.

I'm worried though that because of his age and length of infection, 18 years, he may respond slower. He may have had PANS for 4 years. Diagnosed last month. I was pursuing IVIG for beaten down immune system before I even knew what PANS was.

What facts, information am I missing that would give me hope?

Thanks everyone,

Kari

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Hi Kari. Yes, your are very right. Everybody responds differently. First, to set your mind at ease, yes, some have what I like to think of as a "steroidal effect". An instant positive response. IVIG contains steroids. The immediate response can sometimes be an instant cesstation of symptoms because of the anti-inflammatory effects and the shutting down of the immune system. Here is the important part: This immediate response, it only last about 3 months. My son indeed responded "instantly", but I had to learn that the "big picture", the "important" aspect about what IVIG is that is matures the immune system. That takes time. A year or so. We were about 9 months out where I really saw the cumulative results.... So don't give up. Actually, the fact that he is not having huge negative reactions may be a good sign.... :)

 

Best Regard

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The effects may take awhile to be evident -- and it may be a week to week progression...two steps forward, one step back....Ask him in 3 to 4 weeks if there is an improvement, and have some way to quantify the symptoms, a checklist, a tally--something that is objective. His own "feeling" may be affected, but slowly...six months from now, that is when you will have a better picture of the outcome/results from IVIG...just our experience, hope that helps.

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Thanks for responding. All very good information. I actually don't know his dosing. I am assuming high dose as he will only get it once a month. He meets with doc on Friday so will find out for sure. His IVIG did not contain steroids as he has Lyme.

I was so glad that local cancer clinic could administer doctor's orders from a city 2.5 hours away. It made for an easier day. Hope to get infusion done at home for the next 5.

I appreciate the posts!

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For PANS, high dose IVIG is used - it's important.

Sorry I don't have links or aren't more articulate now,

but the PANS dose typically is 1.5 to 2.0.

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IVIG results are different for everyone. It is great that your son did not have severe side effects - especially without prednisone. It is better to not use prednisone if you can avoid it.

 

High dose (1.5-2grams/kilo) is usually recommended for kids with PANS as it is anti inflammatory and stops the autoimmune process. Low dose (usually .5- .75 gm/kilo) is usually used for kids who are immune deficient but not autoimmune as it supplements the low antibodies, but can also cause some inflammation -which we want to avoid in PANS.

 

Results of high dose IVIG can take several weeks to see. In theory, the "good" antibodies complex with the "bad: antibodies in the brain and remove them from the brain. This can take a while and sometimes kids have some flares while all this is going on, so don't be discouraged if you see some "turning back of pages"- or PANS symptoms you thought were gone.

 

I find it best to look at the big picture and compare each month saying "overall, are we better than last month?".

 

In the case of lyme, IVIG will not remove the lyme or do anything permanent while the infection is brewing. I am hoping you are getting good lyme treatment and he is on good antibiotics. The IVIG will help to support the immune system to make the other treatments more effective.

 

 

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Thanks Kim. I am pretty sure it is high dose. I took a picture of the bag of IG before it was hung but can't read it. Doc is ILADS doc and familiar with PANS. I'm sure it is high dose but not sure on exact dosage as my son is 6'3 and 240 pounds. I know weight is used in calculating. He is autoimmune with positive ANA.

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If he is adult sized and he did the IVIG for about 6 hours per day for 2 days then it was most likely high dose - either 1.5 or 2 g per kilo. If he did it of half that time then it may have been low dose

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