Prior to IVIG, pls make sure u test for IGA Deficiency

[coco]

Well, the unthinkable happened. My dd has received 6 ivigs to date, one high dose, 4 low dose and one high dose. Neither physician administering tested for an IGA deficiency, and since the chances are very small and all seemingly went well during the procedures, I really did not give it much thought. It took two other physicians to run IGA tests while performing their own screening process for Lymes and MycoP....low and behold SHE IS ONE OF THE FEW WHO HAS AN IGA DEFICIENCY! She could have gone into anaphylactic shock and DIED!!!! When I spoke with the nurse today and asked her to look at the file she immediately was shocked to see this and admitted that my dd had "fallen through the cracks." And I didn't get my dd's ivig at the Jiffy-Lube, if you know what I mean!! Now I am wondering if we impeded any progress she could have had because of this, as her poor body had to struggle with this as well. It literally makes me sick to my stomach. It only goes to prove that we as parents must be overly vigilant is treating our children and NEVER assume some else has everything in control...EVER!

[kimballot]

Wow! This is scary. Thanks for letting us know!

[peglem]

I have looked into this a bit because my daughter does have low IgA, well below normal range. The problem w/ IVIG and IgA deficiency is if the patient has autoimmunity to IgA. Then the Immune system may attack any IgA that is in the donor immunoglobulin, and cause a reaction. Allie's immunologist does prescribe IVIG that has a very low IgA, just in case, but believes it is still safe- that even among the IgA deficient the risk is minimal.

[Johnsmom]

Jeez. Thanks Peglem for explaining that. We go in next week for our 1st IVIG and its not at a Jiffy Lube either!

 

 

 

I have looked into this a bit because my daughter does have low IgA, well below normal range. The problem w/ IVIG and IgA deficiency is if the patient has autoimmunity to IgA. Then the Immune system may attack any IgA that is in the donor immunoglobulin, and cause a reaction. Allie's immunologist does prescribe IVIG that has a very low IgA, just in case, but believes it is still safe- that even among the IgA deficient the risk is minimal.

[saidie10]

Well, the unthinkable happened. My dd has received 6 ivigs to date, one high dose, 4 low dose and one high dose. Neither physician administering tested for an IGA deficiency, and since the chances are very small and all seemingly went well during the procedures, I really did not give it much thought. It took two other physicians to run IGA tests while performing their own screening process for Lymes and MycoP....low and behold SHE IS ONE OF THE FEW WHO HAS AN IGA DEFICIENCY! She could have gone into anaphylactic shock and DIED!!!! When I spoke with the nurse today and asked her to look at the file she immediately was shocked to see this and admitted that my dd had "fallen through the cracks." And I didn't get my dd's ivig at the Jiffy-Lube, if you know what I mean!! Now I am wondering if we impeded any progress she could have had because of this, as her poor body had to struggle with this as well. It literally makes me sick to my stomach. It only goes to prove that we as parents must be overly vigilant is treating our children and NEVER assume some else has everything in control...EVER!

 

So sorry to hear this. Please know you are doing the best you can and don't give up. Continue to fight to get the help she needs and be vigilant like you said and get her healed. You can win this fight and she can recover. Sending positive thoughts your way...

[peglem]

From this site:

http://www.immunedisease.com/patients-and-...deficiency.html

 

Patients with IgA Deficiency are often considered to be at increased risk of anaphylactic reactions when they receive blood products (including IVIG) that contain some IgA. This is thought to be due to IgG (or possibly IgE) anti-IgA antibodies which may be found in some of these people. However, it has been observed that many patients with IgA deficiency do not have adverse reactions to blood products or IVIG. There is no agreement among experts in this field regarding the magnitude of the risk of these types of reactions in IgA deficiency, or the need for caution or measurement of anti-IgA antibodies before administration of blood or IVIG to these individuals.

[coco]

Yes, if my dd should need another ivig it will be without the IGA in it...even though this risk may be minimal. I ask myself, "why would I take any unnecessary risks? She's already been through the ringer!" And these doctors are all good doctors, that is the scary part, that even the brightest overlook things or assume. First, do no harm...right? The fact is that the doctors who where giving ivig never even tested her IGA, it was another physician who caught the deficiency. Once the nurse looked at her IGA numbers she immediately said that this child should never have received gamma with IGA in it and "blessed" the physician who did catch it.

[Ellen]

I do believe that the topic of IVIG for those with low IGA is one that really needs to be addressed by the PANDAS experts when they get together for the symposium. It is true that there is no agreement among doctors about the level of risk involved for low IGA patients. My son has low IGA and we avoided IVIG for two years (went the plasmapheresis route instead) because we didn't know that a low IGA form of IVIG existed. There is also a way to break down (fractionate) the total IGA number into two numbers IGA1 and IGA2 to determine if there is a Selective IGA deficiency. I believe that if one of the two numbers is close to zero, then the risk of allergic reaction is greater. One of the numbers for my son was 9 (this is a Selective IGA2 deficiency) and so when he finally did have IVIG in February and then again in April, it was with the low IVIG type, which was called Gammargard 5 percent. In my opinion, it does make sense for docs to screen for this ahead of time and offer this version for those at risk. It is supposed to be just as effective. Be aware that this form is twice the volume of the regular kind and will take longer to administer. But even if there is the slightest chance of an allergic reaction, it is certainly worth the extra time.

 

Ellen

 

 

 

 

Yes, if my dd should need another ivig it will be without the IGA in it...even though this risk may be minimal. I ask myself, "why would I take any unnecessary risks? She's already been through the ringer!" And these doctors are all good doctors, that is the scary part, that even the brightest overlook things or assume. First, do no harm...right? The fact is that the doctors who where giving ivig never even tested her IGA, it was another physician who caught the deficiency. Once the nurse looked at her IGA numbers she immediately said that this child should never have received gamma with IGA in it and "blessed" the physician who did catch it.

[faith]

Yes, if my dd should need another ivig it will be without the IGA in it...even though this risk may be minimal. I ask myself, "why would I take any unnecessary risks? She's already been through the ringer!" And these doctors are all good doctors, that is the scary part, that even the brightest overlook things or assume. First, do no harm...right? The fact is that the doctors who where giving ivig never even tested her IGA, it was another physician who caught the deficiency. Once the nurse looked at her IGA numbers she immediately said that this child should never have received gamma with IGA in it and "blessed" the physician who did catch it.

 

hi coco,

but what I don't get is that being that your doctor is an immunologist, and he did the work up (I assume) didn't he know that low iga is a problem? that is how you went on to do monthly ivig, correct? based on the immunodeficiency work up you had there? Is it alright for me to say to parents, please be aware of all these things, because just because somone does ivig, doesn't mean they are well versed in PANDAS or how exactly to treat. I have heard of the low iga before, a couple of folks here have talked about it for their child, I think htere is a dad here who did, cant' recall at the moment. I truly don't understand how something like that could be missed--what is your plan now?

Edited June 10, 2010 by Sheila Rogers

[Fixit]

How is your son doing???/

how long till you saw an improvement???

if i may ask how old is he and what symptoms were you dealing with?

 

Thank you for your information...

[Joan Pandas Mom]

Coco thanks for this post, I had no idea it was that serious.

[Ellen]

Fix it, to answer your question, my son is 13 and of all the treatments we have done for him (including plasmapheresis, full strength antibiotics, gfcf diet and numerous supplements, neurofeedback etc.) IVIG has been the most helpful. I will try to post a separate thread with an update some time soon. He was an extreme case of PANDAS two years ago (multiple hospitalizations) but has come a long way and was still having some significant issues with homework, reading, and focus until after the first IVIG (1.5 gm. per kilo over two days) in February. Starting about five days after the first IVIG, he started doing homework more independently and within two weeks there were more obvious improvements in this area and with other issues as well. He still has some reading difficulty and anxiety issues and is not yet symptom free, but he is definitely making great progress. Two nights ago there was an awards ceremony for his 8th grade graduating class, and he received a Rotary Club award for "Extraordinary Progress" which is given to a student who overcomes a great obstacle in an extraordinary way. A real proud moment for me and a boost for his confidence too!

Before the IVIG, I was worried that the low IGA version would not work as well and this was not the case for my son. Yes, he has had his setbacks and his turning back of the pages like most others, but I do think IVIG has made a big positive difference for him.

 

Ellen

 

 

How is your son doing???/

how long till you saw an improvement???

if i may ask how old is he and what symptoms were you dealing with?

 

Thank you for your information...

[nevergiveup]

Coco and Ellen,

 

What's the difference between Gammagard 5 percent and Gammagard S/D. I am confused a little, my dd gets gammagard S/D. Also why more medicine or volume? Is it still not measured by Grams? Any help on this is greatly appreciated! Never give up

[Ellen]

I have not heard of Gammagard S/D before, and I don't know if it is different from Gammagard 5 percent. I was told that the Gammagard 5 percent is twice the volume of the regular kind because it comes in powder form and has to be diluted.

 

Ellen

 

Coco and Ellen,

 

What's the difference between Gammagard 5 percent and Gammagard S/D. I am confused a little, my dd gets gammagard S/D. Also why more medicine or volume? Is it still not measured by Grams? Any help on this is greatly appreciated! Never give up

[nevergiveup]

Thx Ellen, I think there are two kinds 5 percent and less than 2 percent. Maybe the S/D is the 5 percent, not the 2percent. But I am still not clear. The S/D is also in powder form and I need to clarify the volume issue? Is it still not measured in grams, does that mean that you increase the sterile water mix or do you need to increase the grams also to be equivalent to the regular gammagard? I will ask my doc. I know my dd has her mixed in a sterile environ at childrens hospital so the volume is purposely rediuced (sterile water) and then becuz the concentration is higher they jiust reduce the infusion rate so she doesn't get too much med. Her infusions last less than 2 hours for one gram per kilogram. Seems short though, they don't mess around with getting it in since my insurance only pays 81 $ per infusion for the home nurse.