Why would you have a setback 20 d post IVIG?

[mom md]

I do think that healing process is like the healing process of encephalitis. For the first 6 months, several steps forward than back, the progressive healing for the next 6 months, then fine tuning for the next year. The IVIG removes the antibodies but takes several weeks to work. It takes 3-4 months before you can see the full affect. Also, I think the nerves "misfire" as they heal. We had PEX July 6th anf 3-4 weeks after had 48 hours of regression and then everything was fine. I still see small issues when he gets tired or overheated. Dr. Latimer said this was all normal. I think the doctors need to do a better job of educating the parents on what to expect post-treatment. I think it takes a long time for the brain and nerves to heal and that the recovery is not as immediate as we think or hope it to be. This sounds like the "turning back the pages"as Dr. K described.

there are a few possibilities:

1) there may be strep hiding out in the body that isn't being wiped out by lower prophylactic doses of antibiotics

2) the higher doses are immune-modulating

3) IMO PANDAS kids don't seem to have a "normal" immune system against strep, so you can't assume their immune system is doing much to fight off a strep infection. So, perhaps even the treatment level doses aren't always enough if there is strep hiding out in the body somewhere. The antibiotics have to do more of the work, vs. the immune system plus antibiotics in a normal kid.

 

This seems to have held true with Sammy (Saving Sammy)...he responded to long term high doses of Augmentin.

 

(my theory) I also believe if there is exposure/infection/colonization with strep, that can cause a set-back post IVIG or even a failure for it to work long term. In the 1999 lancet study, there were a few Swedo kids that had to have repeat IVIG or pex just because they were exposed to strep. They didn't actually get full-blown infections (they were on pen prophylaxisis).

 

Yes, my dd had IVIG in August 09. She's been on Azith. 250mg/day since June 08. Over the course of last year we were seeing a "baseline change" and exacerbations (although nothing compared to the ###### of Sping 08) with strep exposure (when family member were positive) and with other illnesses (fifth's, the flu) so we decided it was time to do IVIG. I think it is too early to tell how well it worked. Overall she is doing pretty well, definitely some PANDAS-sy moments (anger, irritibility, anxiety) but overall pretty good. She hasn't had any illnesses or known strep exposure since IVIG. 1/4 of her class came down with the flu at the beginning of the year but she was fine (she already likely had h1n1 in June). In about 6-12 mo., if all is doing well, we might try dropping her azith. down to 125mg/day...at least that is my plan. My dd might also be a more severe case...during an exacerbation her CaM kinase ll was 253%...the highest Dr. Cunningham has ever seen.

 

Also, don't forget to change toothbrushes and toothpaste!

[melanie]

WHAT IS TURNING BACK THE PAGES MEAN?

[kcdc3]

Please explain the dog issue to me - can dogs be a strep carrier??? My dd's issues started the year we got our dog......explain what you mean so I can make sure I'm covering all my bases.

 

 

 

I completely agree about the loss of your own brain. Mine isn't functioning as well either.

 

 

I do understnad your question and yes, she is definitely better even though her symptoms have returned. The rages are very short and the behaviors are manageable, they are all just there. And they take so much effort and energy to manage.

 

We do have a dog and did have him tested. He was negative. I also had some abx that I never used on DD that I gave to the dog just in case. I'm wondering if when we were at the ped's for our regular consultation if she was exposed to strep.

[EAMom]

Dr. Latimer says "dogs are huge carriers of strep". The real research on this doesn't actually agree with that (I've posted more info. elsewhere on this forum but I'd have to find it)...all the studies that I have seen have shown that dogs are actually very infrequent (or almost non-existant) carriers of strep-GABHS.

 

Several people on this forum have had their dogs tested (cultured)...none (that I know of) have come back positive for GABHS (group A beta hemolytic strep--the type of strep that causes pandas and strep throat). Some have come back positive for non-GABHS types of strep...which makes sense as Strep G is a normal inhabitant of a dogs resp. flora.

 

If you are concerned you could have your dog tested.

[mom md]

As the brain heals you see previous behaviors re-surface.

WHAT IS TURNING BACK THE PAGES MEAN?

[KeithandElizabeth]

I just wanted to mention that during our first few weeks post IVIG, we even saw behaviors/symptoms that we had never seen before! We are 4 weeks post IVIG and we are seeing such a remarkable difference. However, our daughter was sick yesterday and we saw such a setback. Then today, our son has been better than ever!! Such the see saw pattern of healing.

 

Elizabeth