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ITP and IgA Deficiency

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13 years 9 months ago #21177 by jkfrye1982
ITP and IgA Deficiency was created by jkfrye1982
Are there any kids with ITP and IgA Deficiency? My 6 year old was diagnosed with ITP mid Nov and IgA Deficient on New Year’s Day. I just want to make sure we aren’t missing anything and want to hear other stories of kids like mine. I get so worried sometimes that there is something more going on that we aren’t seeing.
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13 years 9 months ago #21182 by Ann
Replied by Ann on topic Re: ITP and IgA Deficiency
Most haematologists don't routinely check for Ig levels so most won't know if they or their children are deficient. Was there a reason that your doctor checked the levels? Coincidentally I had mine measured last November and my IgA level was low too although I don't think it's low enough to be called a true deficiency. It was 0.17 g/L. What was your child's level?

From what I could find out from trawling the web, a very low IgA is common in Coeliac's Disease and other autoimmune diseases. A test for Coeliacs might be in order but beyond that I don't know.
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13 years 9 months ago #21240 by jkfrye1982
Replied by jkfrye1982 on topic Re: ITP and IgA Deficiency
Ann - I thought they had to check Ig levels before they give IVIG, because Ig is in the IVIG. At least that is what was explained to me. When my daughter was first diagnosed with ITP they checked her Ig levels and her IgA was low then, but still high enough they could give her the IVIG. But the second time we went in they couldn't find any IgA. So IVIG was out of the question. I'm not sure what her actual number was because there was so little it wasn't measurable. We go to the hematologist and Immunologist next week and I will ask about Coeliacs Disease, although I really don't think it is that because she really has no digestive issues. But it is worth asking about. Thanks for the input.
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13 years 9 months ago #21245 by Ann
Replied by Ann on topic Re: ITP and IgA Deficiency
Yes, I read on the web that low IgA means not to have IVIG. I didn't know that and wonder if they do test us but don't tell the result. I can't find out now if I was tested before IVIG because I have moved away from that haematologist.

Does anyone else know if it's a routine blood test before IVIG?
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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13 years 9 months ago #21264 by Sandi
Replied by Sandi on topic Re: ITP and IgA Deficiency
I don't think so.

A person can have Celiac's without digestion issues. I researched it a lot because I thought I may have had it.
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13 years 8 months ago #21281 by jkfrye1982
Replied by jkfrye1982 on topic Re: ITP and IgA Deficiency
Ann - I take my daughter back to the hema on Tuesday. I will ask if it is a normal test before IVIG treatment and let you know.

Sandi - I have been reading up on Celiac's as well and read the same thing. I am going to ask the Immunologist about that one. I'm not even sure what gluten is, but I know my daughter hates meat, and will choose veggies over cookies. Strange child!

Hopefully all numbers will be where they are supposed to be on Tues. Then I wont have to worry about this anymore. All I keep reading on here is how ITP is just a rollercoaster...and trust me, that's how I feel! We have been dealing with ITP since Nov 17th, so it still may be acute. Were hoping it is!
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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13 years 8 months ago #21348 by Sandi
Replied by Sandi on topic Re: ITP and IgA Deficiency
Even if it's not acute, remissions can happen at any time. Chronic does not mean forever.
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13 years 8 months ago #21514 by jkfrye1982
Replied by jkfrye1982 on topic Re: ITP and IgA Deficiency
The Hema said they check for Ig levels before IVIG. I don't know if all Dr.s do that or just the ones at my daughters hospital. Oh and Bs platelets dropped to 26 today. Not so happy right now. But she got her Beads of Courage today.
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