Questions about "backsliding post IVIG"

[melanie]

I was just reading pixiesmom and her 4 week post Ours seems similar.I'm up early reading my sons iv journal,seeing what is going on. Last week I couldn't be happier ,this week I am again discouraged.What is this backsliding thing.I know its the healing process ,but is it really? 1 OK week 1 great fabulous week 1 good week 1 not so good week.What should I look for just any improvements.Buster if you are reading this can you try to explain this process to me .I am going to that MD Tuesday and I want to ask the right questions .Hes not the MD who did the iv its his buddy and he wants him to take a look at Danny to see what to do next.

 

thanks for listening again

Melanie

[FallingApart]

I am also a bit confused on the backsliding issue. Melanie, I think our children had their IVIG at around the same time. DD had a backslide 20 d post IVIG so we upped her abx from 2 times per week to daily and it helped her. But how much can you up the abx? If they are already on the max dose for their weight daily, how much more can you give?

 

But an issue our ped thinks we are dealing with is the lifespan of the antibodies. DD relapsed at 34 days last time. Our ped thinks that is because the antibodies from the first infusion were no longer working and therefore she needed another infusion. I don't know if that is accurate or if it's because we didn't have her on daily abx. But either way, DD responded immediately to the IVIG and was fine again. Is this backsliding or a relapse?

[melanie]

I am also a bit confused on the backsliding issue. Melanie, I think our children had their IVIG at around the same time. DD had a backslide 20 d post IVIG so we upped her abx from 2 times per week to daily and it helped her. But how much can you up the abx? If they are already on the max dose for their weight daily, how much more can you give?

 

But an issue our ped thinks we are dealing with is the lifespan of the antibodies. DD relapsed at 34 days last time. Our ped thinks that is because the antibodies from the first infusion were no longer working and therefore she needed another infusion. I don't know if that is accurate or if it's because we didn't have her on daily abx. But either way, DD responded immediately to the IVIG and was fine again. Is this backsliding or a relapse?

 

 

was the 2nd IV 2 days ?

[FallingApart]

yes it was.

[EAMom]

Hi Melanie and FallingApart:

read Worried Dad 2:28pm post and Buster's 4:08 pm post:

 

http://www.latitudes.org/forums/index.php?...art=#entry40577

 

In a nutshell.....The theory is that if the immune system (along with traditional course/dose of antibiotics, or a lower prophylactic dose) of a PANDAS child isn't necessarily able to get all the strep that is hiding out in the body. So, even if you do IVIG (or PEX) but then do no antibiotics (or too low a dose of antibiotics) the inappropriate immune response will continue, so the positive effects of IVIG (or PEX) won't last (or if there is enough strep, won't even be seen in the first place).

 

So, in at least a percentage of kids (such as worried dad's son) it is important to do high doses of strong antibotics (like augmentin or azith) with the IVIG....not just the lower prophylactic doses that some docs (Swedo, Dr. K. etc.) use.

 

I don't think this is necessarily true for all PANDAS kids (although some are on high doses of abs b-4 or after IVIG anyway), but seems a reasonable reason for a backslide (after initial response) or complete failure for IVIG to work.

[EAMom]

Backsliding could also be caused by new exposure to strep...this happened to a few kids in Swedo's study. They had initial response but then had to repeat IVIG/pex weeks or months later. They were on 250mg pen 2x daily. They did have an increase in ASO...so their immune system for some reason was still sensitive to strep. Perhaps they actually got a strep (not just exposure) infection, even on the pen.