Multiple IVIGs-how many does it take?

[T_Anna]

Has anyone had to do 4 or 5 HD IVIG treatments to get their child out if a flare? DS14 is two weeks post IVIG #2 and we are waiting to see if it will snap him out if the flare, but I was wondering if anyone has needed to do MANY IVIGs to see the reset button?

 

Keep in mind that we are realizing that DS has probably had PANS since he was 2.5 or 3 when he started losing speech and we had him tested for Autism (came back PDD NOS).

 

Thanks as always,

T.Anna

[beeskneesmommy]

We did 1 IVig with our son and he started really showing positive effects starting at about the 8 week mark, which is when it really should have been out of his system as the half life is about 21-28 days. That was last September, and he continues to improve. It all depends upon the kiddo and the PANDAS, infection, etc. Try to hang in there and give it some more time...

[cobbiemommy]

Our immunologist had prescribed HD IVIg every eight weeks for one year, but did not think it would take that many. We will never know, because the insurance company went back on their promise to pay. We had three and were trending in a great direction. The good news is that my son is in nowhere near as bad a place as when we started. My son is 13 and had been sick since he was 3.

 

Sometimes I feel like Woody in Toy Story, when Buzz says, "We missed the truck. Woody says, "I'm not aiming for the truck." That's me and my son, we are not aiming for better, we want to be riding up front in the car!

[T_Anna]

Thanks beekneesmommy and cobbiemommy. I love that line in Toy Story. My movie reference right now is more like the line from Princess Bride when Andre the Giant says to Wesley "you nodded your head, doesn't that make you happy?"

 

T.Anna

[T_Anna]

Double post

Edited March 29, 2013 by T.Anna

[bigmighty]

DS had two rounds of IVIG, then got strep again almost immediately after the 2nd IVIG. It ended up being a combination of augmentin and a steroid taper that got him back in good shape.

[LNN]

T Anna - you might like this blog about 17 Things The Princess Bride taught Me

http://www.deseretnews.com/article/765622139/17-things-The-Princess-Bride-taught-me-about-autism-parenting.html?pg=all

 

FWIW - IVIG is a tool, not a cure. It takes time to see improvement. But it also isn't the only tool. If you stall, there are still other options that can move you forward. So don't get discouraged if IVIG doesn't get you to where you need to be. It doesn't work miracles for everyone but everyone can still find paths to their own miracles.

[ptcgirl]

My DD13 got PANDAS when she turned 7. This has been a rocky road for her. IVIGs, she's had six now, have been crucial for her. The first few just reset but then she would falter around week 7. She really doesn't seem to be backsliding now unless she gets any kind of infection (which seems to always happen!). Even with infections she doesn't go back to anywhere near where she was before, but we'd like to get it to no backsliding at all. Controlling candida (without Diflucan and Nystatin) is our newest battle. Yeast is a hard one when you take long term abx and eat a typical American kid diet. But she is about 90% (sometimes higher!) which is pretty fantastic for us. We hope to stop having to do the ivigs eventually but I'm so glad we did/do them. Worth every single penny that we don't have.

[tpotter]

My DD13 got PANDAS when she turned 7. This has been a rocky road for her. IVIGs, she's had six now, have been crucial for her. The first few just reset but then she would falter around week 7. She really doesn't seem to be backsliding now unless she gets any kind of infection (which seems to always happen!). Even with infections she doesn't go back to anywhere near where she was before, but we'd like to get it to no backsliding at all. Controlling candida (without Diflucan and Nystatin) is our newest battle. Yeast is a hard one when you take long term abx and eat a typical American kid diet. But she is about 90% (sometimes higher!) which is pretty fantastic for us. We hope to stop having to do the ivigs eventually but I'm so glad we did/do them. Worth every single penny that we don't have.

You mentioned that she backslides when she gets sick, which is often, so I'm wondering what you are doing to support the immune system? Since we started doing that in earnest, as well as controlling yeast (but we do use diflucan, as well as a LOT of probiotics, and are also treating other infections...including several viruses, lyme, co-infections, and also treated mold that turned out to be a problem, we haven't been getting sick as often or as hard as previously. BTW, for the immune system, besides supplements, my children do regular chiropractics (found a great person in network nearby), and I was getting regular acupuncture (worked great until the mold became a huge problem, but then repeated, and I'm getting a lot better.) Everytime he would stick a needle in that made me jump (not all did, mind you), I would ask: "What is that?", and his response typically was "immune system!"

 

90% is FANTASTIC!

[ptcgirl]

 

My DD13 got PANDAS when she turned 7. This has been a rocky road for her. IVIGs, she's had six now, have been crucial for her. The first few just reset but then she would falter around week 7. She really doesn't seem to be backsliding now unless she gets any kind of infection (which seems to always happen!). Even with infections she doesn't go back to anywhere near where she was before, but we'd like to get it to no backsliding at all. Controlling candida (without Diflucan and Nystatin) is our newest battle. Yeast is a hard one when you take long term abx and eat a typical American kid diet. But she is about 90% (sometimes higher!) which is pretty fantastic for us. We hope to stop having to do the ivigs eventually but I'm so glad we did/do them. Worth every single penny that we don't have.

You mentioned that she backslides when she gets sick, which is often, so I'm wondering what you are doing to support the immune system? Since we started doing that in earnest, as well as controlling yeast (but we do use diflucan, as well as a LOT of probiotics, and are also treating other infections...including several viruses, lyme, co-infections, and also treated mold that turned out to be a problem, we haven't been getting sick as often or as hard as previously. BTW, for the immune system, besides supplements, my children do regular chiropractics (found a great person in network nearby), and I was getting regular acupuncture (worked great until the mold became a huge problem, but then repeated, and I'm getting a lot better.) Everytime he would stick a needle in that made me jump (not all did, mind you), I would ask: "What is that?", and his response typically was "immune system!"

 

90% is FANTASTIC!

Tpotter, I agree that we need to do something for her immune system. Just knowing what else to do.... Do you ever feel like our kids are guinea pigs? I just had her do the 23andme test. When we get the results I'm going to take her to a local holisitic/md and see what he thinks. Since we already know she has a mthfr issue, I want to make sure other stuff isn't involved too.