IV IGG Transfusion

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SashasMom

IV IGG Transfusion

Postby SashasMom » Tue Sep 20, 2005 1:39 pm

My son's regular pediatrician and now his DAN! are suggsting we see an Immunologist and talk about an IV IGG transfusion. We are currently on LDN. Has anyone gone through this IV IGG thing? What is it. I can't find any info when I google it. I've posted on other boards but even Dr. JM wasn't sure what it was.

-Crystal

TamiW
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Joined: Fri Feb 25, 2005 12:46 pm

Postby TamiW » Tue Sep 20, 2005 1:48 pm

HI Crystal,
I had IGG IV's before a thymectomy a little over 5 years ago. It was to help give my body antibodies to fight infection and give me some strength to deal with my surgery. They are Gamma Globulin IV's. You can get some specific information at http://www.aegis.com/pubs/atn/1992/ATN15201.html
You do have to sit for many hours to get this transfusion. I would be concerned about that. But honestly, I felt great after each one.
Hope this helps.
Tami

SashasMom

Postby SashasMom » Tue Sep 20, 2005 1:52 pm

Ya I doubt he will sit for more than 15 seconds with something like that. I wonder how they get children to do this. Is this an dangerous as IV chelation? We've got a lot to think about but I really do not like the sound of it. I guess the name of it is what's scary.

-Crystal

TamiW
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Joined: Fri Feb 25, 2005 12:46 pm

Postby TamiW » Tue Sep 20, 2005 2:06 pm

It's supposed to be a pretty safe therapy but mega mega expensive. My insurance covered it, thank heavens but if it's the same thing I got, they were $10,000. OUCH! It is considered a blood transfusion. That part was a bit uncomfortable. Those antibodies come from human blood.

I know the autism community experienced a tragic death recently with that 5 year old boy. IT's very hard to think about. But IV chelation is a safe treatment, in my understanding. They do have to be done right but when they are....they are safe. Course I have posted before that I think giving a child who has never chelated before an IV chelator is never a good idea. Starting slow and steady is the best way, in my opinion. If you are considering chelation, why not start with oral or transdermal?
Tami

jordanshaunasmom
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Joined: Tue Aug 16, 2005 8:13 pm

Postby jordanshaunasmom » Tue Sep 20, 2005 3:07 pm

Crystal, Hi...

You might want to check out the article written by Mary Romaniec about her experiences with IVIG. She is the Mother of an autistic child who basically recovered due to the IVIG treatments he was receiving:

www.mothering.com or www.tacanow.com

As far as I know, the treatments are $2500+ per month. Apparently they need to be done every 28 days. If you can get an immunologist to confirm Sasha needs the treatment because he is immuno-compromised then insurance must cover the cost.

Kim :)

SashasMom

Postby SashasMom » Tue Sep 20, 2005 3:18 pm

Thank you Tami and Kim! Sasha doctors (ped. and DAN!) seem to believe that all his bloodwork over the last 2 years showing no improvement in immune system (actually it's dropping) would make him eligible. 2 subclasses of IgG are below normal (and has been for al ong time) and the other 2 IgG subclasses are border being low.... IgA stays low and drops instead of raises even with all the supplements, probiotics, and LDN but we haven't been on LDN long enough for it to show improvement to the immune system.

Our insurance is pretty good about paying for everything. (DAN! appointments with our $25 copay, all labs from great plains at 100%, and all medications at 80%) so we are very fortunate with that.

I guess I'll just wait for the appointment and see what he says! I am so nervous about it though. If we decide to do chelation it will be transdermal. I have seen so many kids have good response to IV Chelation that I feel it is safe but there is always a risk for everything. I didn't mean to make it out to be that IV Chelation was dangerous in my last post. It's just scary. :D

Thanks again for your replies! I am so amazed that so many parents have so much knowledge about everything.

-Crystal

terresa
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Joined: Sun May 01, 2005 1:18 pm

Postby terresa » Tue Sep 20, 2005 6:21 pm

one of the doctors at the last dan! conference that i attended talked about ivig. his son was taking the treatment. also, one of the moms that sat next to me had her daughter taking the treatments. the mom's dad was paying for it. she told me that they lived in illinois, i believe, and had to go to florida every 2 months or so to get the treatment.

this doctor said that it can be very effective, and that it helped his son recover, but that they did not know when his child could ever come off of it without regressing back to the point where they started. he said that the treatment is very expensive, and is a blood product, which is a risk in itself, but he said that it helped his son tremendously, and was worth the risk to them. terresa

SashasMom

Postby SashasMom » Tue Sep 20, 2005 7:00 pm

Hmm... I wonder why that parent was having to pay out of pocket for it. Usually Immunologist won't do it for the diagnosis of Autism from what I understand... but for auto-immune.

All the bloodwork we've had done over the past 2 years (regardless of diagnosis of Autism) has shown that he has auto-immune like alot of ASD kids.

We had bloodwork done for IgG subclass and IgA in December 2004, Feb, April, June, August, and September of 2005 and all show very low. 2 of the subclasses remain at borderline low.

We are also doing Dr. JM's high Vit A protocol per our DAN! but we haven't been on that very long. Do you think that we should give LDN and Vit A 6 months then retest and see if IVIG is even needed. I do not want to rush into anything but I hate keeping him sevluded and not going anywhere b/c I'm afraid he'll get sick. If he catches a small bug it turns into Pneumonia or something worse. He had RSV disease and gave it to his brother who was 8 weeks old. He's 1 now and doing fine but that was just an example. I guess we've got a lot to think about. This stuff is so stressful! :)

-Crystal

jordanshaunasmom
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Joined: Tue Aug 16, 2005 8:13 pm

Postby jordanshaunasmom » Tue Sep 20, 2005 8:59 pm

Crystal;

Sorry to hear about your stresses! I totally empathize. I'm terrified of taking my kids to the McD's playroom (and any public play place) because they always come home sick.

I recently asked my DAN! if my daughter should try IVIG as I suspect she is also immuno-compromised. He stated that we will try other alternatives before resorting to this type of therapy - he didn't have enough time to elaborate on other treatment methods. I will bring it up with him again and let you know what his thoughts are...

Kim.

Sashas-Mom

Postby Sashas-Mom » Tue Sep 20, 2005 9:05 pm

Thanks Kim! I'd love to hear the other alternatives....
so far we've been on the "normal" I suppose....
high Vit A
LDN (low dose naltrexone)
Probiotics
vitamin's and supplements which I'm not sure which one's (if any) are to help the immune system.

I have heard that Vit A and LDN are the 2 biggest immune boosters without going IVIG but I have no clue really. Let me know if your DAN! suggests something different so I can ask my DAN! about it.

Thanks for your help!
-Crystal

sashasmom
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Joined: Tue Sep 20, 2005 7:03 pm

to Tami:

Postby sashasmom » Wed Sep 21, 2005 1:43 pm

Tami,

I looked and read the website that you posted and I'm not sure if they are the same thing or not. It sounds like it's the same thing but the name is different.

I found this information on my local BCBS website that shows what procedure codes and diagnosis codes pass for IVIG. I'm sure that this is a Nation Wide coding b/c BCBS from other states coordinate with BCBS of AL using the same codes.

http://www.bcbsal.org/providers/policies/draft/043.pdf

-Crystal

Guest

Postby Guest » Wed Sep 21, 2005 3:15 pm

Crystal,
I do think it's the same thing. Our neurologist called it Gamma Globulin infusions. The nurses called it an IGG IVs. The surgery I got was for Myasthenia Gravis. Insurance papers had IVIG but in description Gamma Globulin. Here is an exerpt from the site you posted.....

" Myasthenia Gravis- severe MG, IVIG can be used to treat acute severe decompensation, (e.g. respiratory failure), when other treatments have been unsuccessful or are contraindicated. IVIG is an option in candidates for thymectomy. (ICD-9 code 358.0, 358.00, 358.01)"

I don't know if it is used differently for different reasons or if all of them require the 2-3 hour infusion. It is considered a blood infusion, even though the Gamma Globulin is clear. I guess they just extract it from the blood. Goodluck!

TamiW
Posts: 3855
Joined: Fri Feb 25, 2005 12:46 pm

Postby TamiW » Wed Sep 21, 2005 3:20 pm

THat was from me! My computer doesn't like me today!
Tami

Guest

Postby Guest » Wed Sep 21, 2005 8:41 pm

Cool! I've been on the phone all day with the doctors office and insurance. The nurse said that each infusion is loaded with tons of IgG platelets from different donors and inject it. It looks like the same thing you had.

Insurance is covering it at 100% if we decide to go through with it. I read the story on Tacanow about the child who was helped tremendously by IVIG and Sasha's doctors (including DAN!) seems to think that if we get his immune system under control then he'll be much better.

Thanks for everyone's help!
-Crystal

Guest

Postby Guest » Wed Sep 21, 2005 10:38 pm

Ok now I'm a little freaked out. Dr Green said (on biochat) that IVIG can be deadly if IgA is low. My son's is very low. Why would his doctors suggest IVIG when his IgA has been low for over a year?

-Crystal

Guest

Postby Guest » Wed Sep 21, 2005 10:43 pm

I wish I knew more about this! I have never heard much about it with autism. Goodluck getting more info!

TamiW
Posts: 3855
Joined: Fri Feb 25, 2005 12:46 pm

Postby TamiW » Wed Sep 21, 2005 10:45 pm

Sorry again. That was from me. My automatic login doesn't seem to be working! I am loving this darn computer today!
Tami

Guest

Postby Guest » Mon Dec 19, 2005 4:28 pm

Crystal,
What test did u do find out Sasha had low IgG levels and with which lab?
And does Sasha have a lot of IgG allergies? Just trying to compare my son and Sasha. My son has no IgE allergies but has a number of IgG allergies. I keep thinking about IV IgG but havent gotten a chance to speak with his DAN. We tried ImmunoKids for his immune system. Not sure that helped him too much. We will be starting LDN tonight.
Thank you.
Kirti

Guest

Postby Guest » Mon Dec 19, 2005 5:14 pm

Human Immunoglobulins (Ig's) are antibodies that fight infection. They have different subclasses, i.e., IgG, IgM, IgE, IgA and sIgA (secretory IgA). The IgM and IgG are predominant among the subclasses and are primarily responsible for immune response. IVIG treatments are helpful only if the body is low in IgM and IgG subclasses. Selective deficiency or low levels of IgA or sIgA normally do not respond well.

For example one could have a low sIgA and still be other wise very healthy (like my son). sIgA's role is to protect the integrity of secretive linings (i.e, GI tract, nasal, buccal etc.). My son has low sIgA and hence has GI dysbiosis and probably a leaky gut, but hasn't had any more infections than any other child of his age. The sIgA levels do change with stress and are typically reflective of a protein deficiency diet. Supplementing with a protein rich in L-glutamine has been shown to normalize sIgA levels over a period of time. If fact people who undergo chemo, and are immunosuppressed, are often put on total parenteral nutrition (TPN) containing L-glutamine. Please search on the internet on sIgA deficiency and treatments

natasa778
Posts: 155
Joined: Mon Dec 12, 2005 1:42 pm

Postby natasa778 » Mon Dec 19, 2005 5:21 pm

Crystal,

I wish I could be of help, but know next to nothing about IVIG. Have a look at this website, I believe it could be of some help:

http://www.webpediatrics.com/ivig.html# ... iter-18446

Natasa


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