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Posted

My daughter finished her second infusion today-- during first infusion her extremities began to look almost mottled- a lacy dark purple appearance . The doctors at the hospital obviously had no idea why it was occuring. She seems fine otherwise. She does have a headache and nausea now. The mottling faded somewhat overnight but was still apparent this morning even before they began the second infusion. They dosed her quite highly with Benadryl before and during and after all infusions. Has anyone else experienced this? They really did not know what to say, they said they had not seen that reaction before. They were focused on being sure she was not having an allergic reaction- but I am concerned that it could be something else-- not necessarily allergic, but something else. Any ideas?

Posted

A few people have reported livedo reticularis, which is a lace-like pattern on the skin that can be an ordinary happening in some girls especially when chilled. However, LR has also been associated with autoimmune disorders. My dd11 had this BEFORE ivig and it went away afterwards. I believe SF Mom in her twins and pixiesmommy (I think she posted photos on the Lyme board) suspect it may have to do with TBI, perhaps Bartonella? It is usually seen on the extremities, but not necessarily.

 

You can google that term to find pictures to compare.

Posted (edited)

Probably Livedo Reticularis - Swelling of medium blood veins. You can find plenty of photos on line. http://en.wikipedia.org/wiki/Livedo_reticularis

 

My twins have suffered from it fairly severely... is present at all times, over entire body up to cheeks. They have congenital LYME/Babesia/Bartonella/HHV6/Coxsackies. It is improving with treatment. Our Dr. does believe it is related to Bartonella.

 

There can be many reasons for its appearance. Suspect its a reaction to IVIG. I would only worry if it does not resolve along with other symptoms post IVIG.

 

-Wendy

Edited by SF Mom
Posted

Thanks for the answers. Yes, it is definitely, in appearance anyways, livedo reticularis. I am familiar with this as a manifestation of some auto-immune problems. I was just hoping lots of people experienced it post IVIG! she had it before only mildly, occasionally and only associated with cold -- hands only. Her arms, legs and cheeks now have it. We are only about 4 hours since the infusion ended. Is this worthy of a call to our pandas doc? she was not involved in the infusions directly.

I was concerned it was some sort of sign of immune problem caused or exacerbated by the IVIG (as opposed to the immune prob we are trying to fix:)

Posted

If I remember correctly, this LR became quite prominent after ds IVIG. The back of his upper arms also got to looking very red & irritated, and extra bumpy, too. Dawn

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