Is there anything else I can do?

[TracyRee]

Ds just truned 6, pandas onset at almost 4. He's been diagnosed with Asperger's as well. He's on 200mg zithromax twice a week. He's on a GFCF diet and gets probiotics, nystatin and a multi daily.

 

We had two amazing weeks after starting the GFDF diet, then he came down with a cold and we're back at square one. Every time he gets sick we have months of irritability, tantrums, monologues, rages.....

 

I had resigned myself to thinking this was just who he is and trying to cope, but those two weeks were astounding. He was a typical kid (except of course I think he's much better than "typical"). He was HAPPY, flexible, remorseful when he made mistakes, pretend played, inquistive about other's perspectives. I hadn't seen him like that before, but I knew that THAT was HIM, the real him that is hidden under all this pandas crap.

 

Now that I know what he can be, I'm desperate to get him back. What can I do???

[Mary M]

I'd consider daily abx, perhaps IVIg. Our children all deserve to be who they really are.

[matis_mom]

Ds just truned 6, pandas onset at almost 4. He's been diagnosed with Asperger's as well. He's on 200mg zithromax twice a week. He's on a GFCF diet and gets probiotics, nystatin and a multi daily.

 

We had two amazing weeks after starting the GFDF diet, then he came down with a cold and we're back at square one. Every time he gets sick we have months of irritability, tantrums, monologues, rages.....

 

I had resigned myself to thinking this was just who he is and trying to cope, but those two weeks were astounding. He was a typical kid (except of course I think he's much better than "typical"). He was HAPPY, flexible, remorseful when he made mistakes, pretend played, inquistive about other's perspectives. I hadn't seen him like that before, but I knew that THAT was HIM, the real him that is hidden under all this pandas crap.

 

Now that I know what he can be, I'm desperate to get him back. What can I do???

Awesome that you saw such a remarkable change with the diet! At least you know that helps, keep it up!

I agree maybe you need stronger antibiotics (or switch to a different one?) And maybe just add motrin for a few days to stop the inflammation. Maybe even try to get a steroid burst? Also, even if it looks like just a cold, take him in to the doctor and make sure there is no strep or ear infection or anything else. And check all family members too.

But just remain positive that yes, he can get back to normal, and yes, he will be well again. I know it sucks when you see then slide back again, but you know he can get back. Be patient and thankful for those two weeks. I've come to accept the bad times and keep fighting for good times.

[LNN]

Oh, I so know how you feel. My DS (almost 8) started battling this 2 yrs ago. He gets asperger's-like when in episodes. We get big time brain fog along with the other Pandas symptoms. He kind of "goes away." Then when he's truly healthy, I get to see the "real" kid underneath it all and I about jump out of my skin with joy. Then some illness comes along (often just from exposure to someone else) and steals him away all over again. It drives me mad. Trying to uncover the "real" kid for more than just a glimpse is one of my dominant thoughts.

 

The bad news is that 2 yrs later, I am still fighting the fight. We've done plasmapheresis (saw positive results, have enjoyed tremendous relief from tics, but other symptoms returned when his best friend had chronic strep last fall), we've done prednisone tapers (works wonders but not a long term solution) and 2 months ago did IVIG (took 8 weeks before we've started to see improvements, so jury is still out). So I don't have any magic bullet answers. I would recommend having a full immuno workup done to test for allergies (esp food in your case) and to check for mycoplasma, elevated aso/anti DNase B titers, immuno-deficiencies, signs of chronic infection etc. And it may be worth doing an Igenex Lyme test before doing any of the expensive/invasive treatments. (we just sent our samples this week).

 

I second the opinion that twice a week zithro may not be enough, or may not be enough to start with. But I also realize that abx is something you have to fight for with most docs. It's not as simple as calling and telling them that strangers on some forum suggest a different abx regimen. But upping the abx is the first place I'd start, along with the immuno/lyme testing. If lyme comes back negative from Igenex, and if funds allow, I'd probably then do the Cunningham test to look for elevated CamK. That would give you an indication if Pandas was a strong or weak possibility. (IMO I would not do the Cunningham test until you rule out Lyme from Igenex as it seems that both strep and lyme can elevate CaM K levels and many insurance companies will reimburse you for Igenex after you pay out of pocket, but not for Cunningham).

 

Don't give up. The answer may not be simple, but I refuse to believe that it can't be found.

Edited August 20, 2010 by LLM

[Fixit]

 

Don't give up. The answer may not be simple, but I refuse to believe that it can't be found.

 

YOu give me strength LLM...

 

to bring up another thought...on alternative...TSO if you checkt he the thread on doc t's site.. a mom used it for her child who has autism/pandas and reported a month later...no tics, no sleep issues, mood and ocd better!!!!

 

Helminthic therapy http://en.wikipedia.org/wiki/Helminthic_therapy

Edited August 20, 2010 by Fixit