PANDAS mom is lost!

[Aggie103c]

Hi

My 15 yo ds diagnosed with PANDAS last December. He was on various abx and augmentin for 4 weeks showed moderate improvement. Prednisone was best. He had Ivig 16 weeks ago with no improvements. Doc wants him on psych Meds to get over the hump. Does anyone have info on that. He is on Celexa and Remuron for sleep. Biggest issues are fatigue and headache. He also has joint pain depression and anxiety with no tics.

Aggie

[LNN]

Have you looked at the symptoms of lyme? My son did not improve with IVIG but made a full recovery after finding and treating lyme. His lyme symptoms were very very close to Pandas symptoms, with the addition of muscle and joint pain and fatigue. But lots of psych symptoms as well.

[JoyBop]

I dont have any info on those specific meds but my ds is on a bunch of meds to try to help get him through the hump. Some have helped slightly, some have made a mess. But I still can not give up and watch my son suffer and be miserable so I am going to continue to try until I find something that helps or he is cured. I know meds should not be taken lightly, and it breaks my heart to see my 8yo take 14 pills a day, but thats where we're at.

My ds takes Intunive, Zoloft, Clonidine, and was just prescribed Abilify. We havent started it yet, as Im waiting to see if his t and a is a go. IF so, I will wait until after to see if its still needed.

[Dedee]

The symptoms you describe fit lyme infection. An ongoing infection would also explain why IVIG did not give improvement. Lyme is a tricky thing. If you do a search on the archives on this forum you can learn a great deal. Very basically it is hard to get a blood test that is reliable. You need to see only doctors who are trained in the treatment of lyme. A LLMD (lyme literate MD) will look at test results and clinical symptoms to decide if your son fits the diagnosis. Other physicians only look at whether the tests say positive or negative. Again tests can not be looked at exclusively. Do some research on lyme disease and you will see the contraversy. Many here have gotten positive results from an LLMD after being told they were negative by a main stream physician.

 

It is not unusual for one month of antibiotics to fail to give improvement. Especially if you are dealing with something other than strep. You should find a LLMD or a PANS specialist and get more testing done. Sounds like you need more antibiotics or a combo antibiotic. It's possible if you got the right treatment you wouldn't need the psych meds. Not to say there is anything wrong with giving them. We have gone that route in the past. I would try to exhaust all other methods first though. Especially if you have only done one round of antibiotics. Extensive testing for infections and immune response should always be done with these kids. If your physician has not tested beyond strep, you aren't with the right physician.

 

Dedee

[Aggie103c]

Thank you all. I expressed to the doc that I think he is co-infected with something other than strep. ASO titer was 800 and he did take amoxicillin, Cefdinir and maybe another one I can't remember too. I saw the most improvement with augmentin. His lyme titer was negative but done at a local lab although mycoplasma was positive. I will investigate Lyme. Thanks again!

[Hrosenkrantz]

One thing im wondering on this lyme question -- if the aso titer is high, does that mean it IS strep (pandas), or does that not mean anything? My son has high aso titer, but also positive igenex for lyme (igenex also said positive cdc)