If your child had PEX or IVIG, were the symptoms gone going in?

[Megan]

Hi all,

I'm still waiting to get my child into DR. L and DR. E but was wondering whether it is essential to get the symptoms down prior to trying either IVIG or PEX? My daughter is reallly struggling with tantrums and now multiple personalities. It normally happens in the evening but can be set off during the day if she doesn't get what she wants. Two different antibiotics didn't help much and now she has stomach pain so I am worried she cannot tolerate more abx.

 

If your child had symptoms going into these treatments, did the treatments work?

 

Thanks so much,

 

Megan

[beeskneesmommy]

I spoke w/Dr. Elia yesterday. The licensure process for DE is dragging and she hopes to be up and running at Nemours within weeks, hopfully no later than Jan. Re: worries about abx tolerance: have you drwn blood and done a CBC and chem screen to see if there is any liver/kidney concerns? PEX basically cleans the blood whereas IVig adds in new antibodies. It is important to clear infection as much as possible. Have you had her on an abx combo? Has she been tested for Strep titres recently and for co-infections? We see Elia, Latimer and Bouboulis. I would recommend trying to get in w/Bouboulis for help with clearing infection. I would also keep Elia and Latimer on board. If my memory serves me, you are from my neck of the woods on the Main Line outside of Philly? It serves us as an excellent jumping off place to see all our docs. Feel free to PM me any time. -Kath

[Megan]

Beeskneesmommy- thanks for your reply. I have been calling about Dr. Elia and they still don't have a date. Yes, we are on the mainline. I may call you sometime soon. My daughter's tantrums are worsening lately.

Thanks,

Megan

[dcmom]

Hi Megan-

 

Both of my girls had pex with Dr L. They were extremely symptomatic, and it was a miracle for them.

 

There would be no need to do pex, or ivig if a child is symptom free.

 

good luck!

[nicklemama]

I echo DCMom....you wouldn't need IVIG or PEX if they were symptoms free. The first IVIG DS had, he was doing pretty well and symptoms weren't terrible. He was past exacerbation and just not getting close enough back to 100%, so he had IVIG. Second time around, he was in an exacerbation (and still is). The difference between the two are after the first one, he had a slow and steady improvement w/ a few setbacks along the way. This time around, he got dramatically worse about 3 days post IVIG and we are just now seeing small improvements and have gone 3 days w/out raging.