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qannie47

Visit w/DR. K...10wk IVIG update

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As of week 10, my ds is still clear of any Pandas symptoms. Dr. K is thrilled. Follow up will include remaining on antibiotics and strong vigilance for a recurring strep infection. He said that the IVIG would not hold up to strep being in his body for any great length of time and could trip off an episode in the next couple of years. He said that he should be strong enough to fight off other forms of infections without recurring Pandas, however, we would still treat other infections with full dose antibiotics. We will remove his tonsils in the winter. He said that I should also see a big change in academics and social maturity as well. He said these changes should be witnessed over the next several months. Interestingly, I asked about using Ibuprophren with minor flairs, and he was adamant about not using them cause he had a concern about Liver damage. One thing to also note, I mentioned that I was giving probiotics at the same time as abx, and he said not too. He said that given at the same time, the probiotics would affect the absorption of the abx and to space it out during the day. I also asked him about the Turkey study, and he basically said that they have already found many other genetic mutations and that he was not all that excited about this recent one. He felt that the use of IVIG will remain the proper course of treatment for Pandas in the future.

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Thanks, im completely freaking out. I finally have everything together in my life despite this disease wrecking my childhood. Im afraid of regressing even though im in an ok place!

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Qannie, one thing that my ped always did was switch abx as soon as I got sick. She also rotated my prophylactic one every 5 years! Most infections do not cause a flare. This one started for me due to mycoplasma!

Edited by LaurenK

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YAY, qannie47! So so happy to read good news!

& laurenk, prayers for you, too.. Drink lots and my daughter says goody's headache powder helps her ivig headache so much, way better then just advil.

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DS just completed day 1 of his IVIG today...hopefully third time is a charm or the PEX is working?! or it's just a flukd, but I'll take it.

 

He is singing along to DH's Smithereens albums. Not sure it means anything, but I could listen to the off key singing all night!

 

Great news Qannie!

 

Good luck tomorrow LaurenK.

 

T.Anna

DS15

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Thx for the updat, things sound great!

Dr k told us the same thing re ibuprofen. Never heard of liver damage? Tylenol, yes, but Ibu??

We are still doing the 14 days of observation post steroid burst. Haven't seen big changes yet. What happened with your child after the burst and when?

Where did you go for the ivig? How soon after steroid burst did you get ivig? Was ins able to cover?

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Dr K opted not to do steroid burst with my ds...not sure why. We had it done at Oakbrook Terrace with Dr K. I too thought Ibu would be safe on liver, but I guess when I think about it still is a med that would filter thru the liver.....

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Dr. Bahkta said on the last Radio Pandas that she thinks Naproxen (alleve) to be a safer option. She referenced a study on long term pain med use in Europe I believe (it was the Summer Flares show).

 

T.Anna

Edited by T.Anna

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There is a methodical reason why that I don't know, but many of our kids should not take Tylenol. It comes up when ppl talk about vaccines and damage that Tylenol makes worse. I just avoid it altogether and stick with ibuprofen.

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My friend who a pediatrician and married to a cardiologist said that ibuprofen is very safe. we went away with them a few years ago and after kayaking I had a ton of aches in muscles I didnt think existed, they made me take 3-4 pills at a time..."2 is nothing!"

 

T.Anna

DS15 who sometimes take Advil and sometimes alleve (lately at night, since it's 12 hours).

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