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Low IgM-High Myco-Plasmapheresis next week!


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We are gearing up for plasmapheresis next week and just got back some test results back...

 

IgM=29 reference range: 35-239

 

So, what does mean? I googled it and it said it is linked to certain types of cancer, leukemia, and autoimmune diseases. Ok, so we know he has an autoimmune disease. My question to you all is this: Does this change anything in terms of treatment? Should I forget about plasmapheresis and just ask for IVIG?

 

Also, his Mycoplasma came back high (318). So I'm taking him to the pediatrician today, but I am not getting my hopes up on them knowing what to do.

On top of everything, he is really showing an increase in symptoms, so I have to take everyone in to check them for strep. AND, we have family visiting, which makes it all even more complicated.

 

I am really getting stressed out here, trying to make sure everything is "perfect" for next week...

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Hi -

 

I would really like to know what you find out about this! My older son had a slew of labs prior to the IVIG he had at the end of May.

 

His IgM = 17 (Reference Range: 35-239)

 

His Myco P = 1215 (really high). The Reference Ranges for this were: -100 = Negative / 100-320 = Intermediate / +320 = Positive

 

Anyway - - I'd really love to hear what you find out! I was wondering about antibiotic treatment in regards to these results, as I've read that others have "changed it up," so to speak, when dealing with Myco P. Though, my son's ASO & Anti-DNase-B titers are also very elevated - - and continued to stay that way prior to IVIG (don't know about post - as we've not done them - not considered accurate, at this point - I think).

 

Thanks a bunch!!

Karen

Karen,

Well, did not find out much today. The Dr. said his Mycoplasma could be up because of a recent ear infection he got while on Augmentin. That was treated with Rifampin. He checked out ok upon examination, but I asked her to please repeat the bloodwork to make sure its coming down. She had no clue about the low IgM, I will have to seek out an immunologist for that, but what I gather from researching online is that it is linked to autoimmune diseases and that it has to do with ability to fight on infection. It also mentioned IVIG as a treatment option, and that some people are put on prophilactic antibiotics. So it kind of falls in line with what we already know.

I would say try to re-run those tests in a few weeks to see where things are going.

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Have you found out if Georgetown will do the plasmapherisis outpatient?

I spoke with Andrea an she said there is no way it can be done as outpatient. She will try to sort it out from her end, but it might take a bit longer to get it sorted out, so the treatment might get delayed a week, but she was pretty confident it will be ok.

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  • 2 years later...

We are gearing up for plasmapheresis next week and just got back some test results back...

 

IgM=29 reference range: 35-239

 

So, what does mean? I googled it and it said it is linked to certain types of cancer, leukemia, and autoimmune diseases. Ok, so we know he has an autoimmune disease. My question to you all is this: Does this change anything in terms of treatment? Should I forget about plasmapheresis and just ask for IVIG?

 

Also, his Mycoplasma came back high (318). So I'm taking him to the pediatrician today, but I am not getting my hopes up on them knowing what to do.

On top of everything, he is really showing an increase in symptoms, so I have to take everyone in to check them for strep. AND, we have family visiting, which makes it all even more complicated.

 

I am really getting stressed out here, trying to make sure everything is "perfect" for next week...

Mati's mom,

Whatevere happened? We're you able to receive pex with an active mycoplasma infection? Was pex helpful? My son had negative mycoplasma UNTIL we did ivig at which point his Titers came up positive. We are receiving pex shortly

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PowPow,

Did your children have a follow up IVIG after the PEX?

Ko's Mom

 

One had it about 4 months later, when a new symptom (anorexia) appeared suddenly. She had a saw-tooth improvement after that and is doing well now. She is also on full strength Zith, Augmentin, low dose clomipramine and completed 3 weeks of intensive ERP at USF about 9 months ago.

The other had IVIG first, (no significant improvement) pex 2-3 months later (improvement at one month). Pex was repeated 5 months later and again, more improvement at one month. She did get another IVIG one month after the second pex, but really did not see a whole lot of help from it.

She is doing better after intensive therapy also, though still struggling.

I know you have older kids, right? Please consider McLean OCD program if they get to the point that therapy might help. I cannot stress enough how helpful the therapy tools are. At this point, there is no "cure" for our really sick kids. I think we should do as many helpful things we can do to equip them for the best chance at healing. For my family they are, in this order, I think: pex, steroids, CBT/ERP, clomipramine (low and slow, on that one- though it is not an SSRI) and maybe abx. IVIG maybe, but for my kids it was such a slow improvement and saw-tooth, I could not attribute it for sure to IVIG.

My kids were 12 & 13 at the time of pex, btw.

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PowPow,

Thanks--good to know that PEX doesn't necessarily need to be followed by IVIG. I have been thinking of an OCD program for my DS--Mclean, USF, or Rogers. For DD OCD is there, but anxiety/panic attacks have always been much worse. Not sure whether these programs address that so well... Also wondering if Dr. L might want to do something more for DD given all the hits her immune systm has had in the past six months including hospitalizations for two life-threatening infections. We'll see Dr. L at end of month for follow up.

Ko's Mom

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