Titers are down but symptoms are up...

[Dedee]

My middle son (who usually is mild PANDAS)is having a really rough time lately. He tested positive for myco p about 4 months ago and has been on antibiotics since that time. He has had intermittent PANDAS symptoms with illness for about four years but only mild anxiety with occasional OCD. In the past he always responded well to antibiotics. When we started the antibiotics this time he responded well and all symptoms went away, so we stopped them after three months. Thats when everything exploded....his anxiety went through the roof like I have never seen it. I contacted the doctor and he restarted the antibiotics and things settled down but never went completely away. So after about another 3 weeks I told the doctor that he still wasn't 100%, so he switched antibiotics and drew labs. This time all the myco p titers were back to normal as was his immune panel (which had shown immune dificiency). So I don't understand why his neuro symptoms continue to get worse if the infection is clear? We ran a lyme test on him previously and the doctor (who is an LLMD)said he really didn't believe he was a "lyme candidate". I'm just not sure where to go at this point. Should I look into IVIG or consider the CBT route? The CBT therapist in this area isn't that great (compared to Rothman Center in Florida)and we are really running out of money after paying for my daughter's 2 IVIG's. Insurance may pay for IVIG for him since his first set of labs showed immune difficiency but I don't know for sure that would help his symptoms. I feel so guilty because I know we give more attention to my daughter than to him because she is so demanding and he is more quiet and anxious. Forgive my whining for a moment...but why do they both have to be doing this at the same time.....or rather WHY do they both have to have this at all???? Uggg....

Edited November 14, 2011 by Dedee

[MomWithOCDSon]

Hi DeeDee --

 

So sorry for what's happening now in your household!

 

I'm thinking maybe your DS is reacting to some other "onslaught" of his immune system . . . a virus or a common bacterial infection that isn't tested for? So, on paper he looks great, but the walking, talking reality is something altogether different.

 

We're facing something similar in our house for the last 7-10 days; one day I'm going to learn to keep my mouth shut and not jinx our situation by saying out loud how "well" DS is doing these days!

 

Anyway, we're fighting back with anti-inflammatories, valerian root and yes, some good old fashioned CBT. Sorry I don't have any magic bullets for you, but here's hoping things improve soon. In the meantime, I recommend anti-inflammatories for DS and a nice, frosty margarita for you!

[Dedee]

Nancy, my friend.....you read my mind. Actually I resorted to a margarita over the week end (but had to limit it to one). My next plan is shop therapy...Christmas is coming after all. Actually I think I will start some Motrin for him. I have never really tried that on him before. I will add that to his meds tonight and say a prayer. Thanks for the suggestion. Sometimes I just get brain dead from all the chaos....

 

Dedee

[Burnell]

Our DD12 is doing so much better that we started lexapro and riperidol and now depakote thanks to our new psychatrist this october 2011. The florida OCD therapy (aug 2011) did not help our dd12 at all. The ivig (may 2011) did not help. The anti-biodics have not helped. (oct 2010 - now)

And the psychatrists seem to be covered by insurance.

[HT's Mom]

Dedee,

If as you say insurance will pay for IVIG, and you are already familiar with it with your daughter (BTW, did they help her??), I would definitely look to have the treatment for your son. It is so low risk, and if it helps, which it should since it sounds like you don't have a lyme issue, you have treated him young before he suffers more over time and gets worse. CBT will not help tremendously without clearing the autoimmune problem. And you can always try the CBT therapy afterward if necessary. Do the IVIG first and see where you are. IMHO, of course...