Ivig

[Hrosenkrantz]

Hi -- I know this is covered in other threads, but I'd like to hear some feedback on Ivig. It seems the results are mixed -- for some it doesn't help, for some you have to do it more than once. Does it ever actually solve the problem? My ds has been on a variety of abx since mid march, as well Asia steroid blast, with small progress.

 

Also, beside the cost, any health risk downsides?

[beeskneesmommy]

Yes, there are risks. It is a human blood product. It takes about 1000 donors for an IVig treatment. That being said, if you choose a reputable product, the risks are minimal. There are several different types of product. Gamunex is the only one that is approved for neurological disorders, and the only one that I will use. That being said, there are others that docs and hospitals feel are perfectly acceptable options. The risks for IVig products include the possiblity, but not the liklihood, of blood borne pathogens, including prions. However, products like Gamunex filter with PEX and the risk is very low. There is also a risk in administering IVig which includes, but is not limited to Phylaxis.

 

IVig is a big decision and one that we put off for a long time in hopes that DS6 would recover with abx alone. However, we have had incredible success with it. I believe that finding the right combo of abx and clearing the infection(s) prior to moving on to the IVig is what set us up for such success. I believe that unless you are able to identify the infection(s) and clear them first, IVig may not be as effective. I also believe that the success of the IVig is dependent upon the type(s) of infection.There are different opinions from parents as well as specialists regarding whether IVig is a "cure" or not. There is not enough long term data to know if the results are lasting, for those that have had success. Many people find that they return in time for additional infusions.

 

Re: cost, it varies from doc to doc. DS6 is 45 lbs. and the general cost using Gamunex is a little under $5000.00 out of pocket, all said and done including nursing and doctor's fes. This is at the high end of 2g/1k. Most docs infuse at 1.5g/1k. but the cost doesn't seem to change as much. I have seen various docs charge much more than that - do your research and check on the product that each uses.

 

My suggestion would be to put together a team of PANDAS specialists, combining different disciplines. We see Dr. Bouboulis for immunology. He is responsible for taking DS very, very far with testing and abx. We see Dr. Latimer for Neurology and for IVig. Both have been instrumental in our forward momentum. Ultimately, you will be the most effective researcher and make the best decision for your child.

 

Hope that helps. Best, Kath

[Hrosenkrantz]

Thank you for your response -- I tried to send you a pm but the system did not allow it to go through...

[beeskneesmommy]

I don't know why that is happening! I will try to fix it...

[Hrosenkrantz]

Hi -- tried you again! Wanted to ask you a couple of questions without clogging up the forum:)

[beeskneesmommy]

Deleted

Edited May 26, 2013 by Beeskneesmommy

[Hrosenkrantz]

done

[Hayley]

We did IVIG for DD7 and are so happy we did. She had gotten a lot better on antibiotics (I thought at the time 75-80% back to herself, but in hindsight, she was still acting pretty wacky and suffering a lot, just not having so many rages and generally functioning better from the outside so it felt eons ahead of where she was at her worst),but would get sick with even a little fever virus and regress. It has been about 5.5 months since the IVIG and she is great. She remains on full strength antibiotics. At about 6 weeks post IVIG she really turned all the PANDAS behavior around. About 2 months out, she really came back to her old self (in some ways better than she had been for years). I'd say for several months she was 100% her old self 98% of the time, the exception being little "blips" about every two weeks or so that then spread to maybe once a month (these would last only about an hour or two and were nothing like what we had seen earlier, just hints of anxiety). In the past month she got a terrible fever virus and strep, both of which she came through with just the slightest of challenges (the fever virus, no regression. Strep, nothing anyone would notice, but her eyes looked very flat to me so I felt like she was off. Since getting past the strep, we learned her sister has it too and DD reacted slightly to that exposure this week, but just very slightly and she seems to have bounced back. I credit the IVIG for strengthening her system to manage these illnesses. I don't know if it will last forever, but the results were tremendous -- gave us back our girl! I would do it again in a heartbeat if necessary soon or down the road. I do not think she could have accomplished these gains on abx alone.

[Hrosenkrantz]

Thank you for the responses. Its encouraging to hear that people got their kids back with the IVIG. We're very, very eager for that to happen with our son.

[airial95]

We treated with a variety of abx for over 3 years before we decided to do IVIG. We did it in April, and I am so glad we finally did. Within 24 hours - my son was a different kid. He woke up the morning after the second infusion (after being up all night with headaches and vomiting) and ate breakfast like it was his last meal. That is significant for us because my son's biggest OCD issues revolve around eating. So for him to wake up, ASK for breakfast, and eat with gusto was amazing to see. We are now 8 weeks post IVIG, and still doing well. I would say that he was absolutely at 100% post IVIG. First time we saw that since he had his T&A in 2011 (but got strep again 6 weeks post op).

 

We are seeing a bit of a backslide these last few days - however, he also has 2 loose teeth, so we are hoping that is the culprit and not that the IVIG is ineffective. I should also add that 2 weeks post IVIG, my daughter got strep; not only did he not catch it (a minor miracle in itself), he also had NO reaction to her infection - something we often saw with him.

 

My daughter has been in a flare since her last strep infection in April (unusual for her, she usually is back to 100% 2 weeks into a 30 day course of abx and doesn't require long term abx). We have been so pleased with our son's results, we are in the process of trying to get IVIG lined up for her in case her flare continues much longer.

 

It was a long and hard decision for us, we didn't take it lightly. Prior to IVIG, we fluctuated between 75-85% , we still struggled a lot, but we were "functional" as a family. We had routines down and emergency plans in place that worked for us when the poop hit the fan. We had heard of so many kids getting worse before they got better on IVIG, that it terrified us to lose the "stability" we had worked so hard to achieve. But I am SO glad we did it. We are scheduled to go back for IVIG again in July - and my son (5yo) is actually excited about it, even though he had a rough night of side effects after the second day. He has told me time and again how much better he feels, and he can't wait to go back and get more "supermedicine".

 

My son is happier. He is showing compassion to his sister during her flare. He's playing with friends and toys. I cried the other night when I was going around the house picking up all of his matchbox cars. Most moms would've been annoyed having to pick up after their kids like that - I was ecstatic. I can't remember the last time he just played like a "normal" little boy.

[Hrosenkrantz]

Wow, that's exciting to see a story about progress right away! Also hear you on the fear abu things getting worse before they get better. Things are *improving* with our son through abx but he's still not where he should be. It's easy to say well we can manage like this, who wants to deal with something worse. Of course then we have a flairup and not doing it doesn't feel like an option.