Questionable PANDAS and antibiotics prescribed

[haydensmom]

Hi all, I need advice on what to do with a 9 month rx for Amoxicillian. We just saw a PANDAS specialist for our 4 year old son. She thinks what he has/had is/was PANDAS and wants him to take Amoxicillian for 9 months. Since he never had the OCD, but did have a STrep infection that seemed to cause a tic disorder, he is 90% better now. We go days without any tics. We still have behavior issues, but those were present prior to the onset of all this! We know that antibiotics themselves can cause a host of other problems.

 

What is your experience and advice of this? I have read so much of this and don't want to risk anything getting worse, one way or the other and am scared for him.

 

Thanks.

[nicklemama]

My DS has been on antibiotics for 13 months now. I've seen nothing but improvements in him. We give him a probiotic, Florastor 2x day, every day and have since the beginning. Personally, I believe there is more harm in the PANDAS than in the abx.

 

I'd also tell you that the behavior issues are possibly from PANDAS. Our DS had a 'mild' first episode that was completely missed by us because the symptoms were irritibility and lack of cooperation but it wasn't terrible enough to catch our attention. We thought it was "a phase".

[WorriedDADNMOM]

I would echo Nicklemama as our "first" indication was a tic of the eye,forehead, eyebrow. But our dd had alot of severe emotional lability just prior to the tic and for several months prior, what I would consider pretty emotional. Same thing, we wrote it off as-----tiredness from all day 1st grade, not feeling well, pushing the independence envelope. If your ds is oppositional defiant, or "the crime doesn't fit the punishment" type of crying----meaning overreaction to being told no or little fights with siblings that are a nuclear meltdowns. OCD and lability can present very differently and vary widely from kid to kid.

 

I would say if you have a primary ped that is willing to do abx that aggressively, then do it. My DD's have not responded well to amox as it did nothing for dd7's tic and dd8 strep infection-----anxiety post strep. Penicillin for dd7 took tic away, left her on it for 4-5 months with good results. Have since had other issues where co-infections were treated with zith with some good benefits, but I think they have been too short----in our case that is.

 

I cannot stress enough about getting co-infections checked via blood draw. DD8 had EBV IGG high titer, I think concurrently with strep a few months prior to blood draw. DD7 had very high mycoplasma IGM titer level at blood draw. We have no idea how long she had this acute infection. My gut tells me it was going on for along time. Many of the answers we have gotten have come from this board and reading others stories. The biggest hurdles for us has been getting the peds and staff to believe us and if you have someone that is willing to be aggressive, I think it is a good thing. If the peds are passive, then move on. YOU ARE YOUR CHILDS BEST ADVOCATE!!!!!

[haydensmom]

Thanks for the advice everyone. The bloodwork all came back normal (no Lyme, Mycoplasma, etc...). One day I don't think it's PANDAS and then the next day I do. His Tics are 99% gone (I see one every now and again), but behavior is still bad. We are doing the Feingold diet the best we can with all the holiday parties.

 

This is all so overwhelming at times.

 

 

I would echo Nicklemama as our "first" indication was a tic of the eye,forehead, eyebrow. But our dd had alot of severe emotional lability just prior to the tic and for several months prior, what I would consider pretty emotional. Same thing, we wrote it off as-----tiredness from all day 1st grade, not feeling well, pushing the independence envelope. If your ds is oppositional defiant, or "the crime doesn't fit the punishment" type of crying----meaning overreaction to being told no or little fights with siblings that are a nuclear meltdowns. OCD and lability can present very differently and vary widely from kid to kid.

 

I would say if you have a primary ped that is willing to do abx that aggressively, then do it. My DD's have not responded well to amox as it did nothing for dd7's tic and dd8 strep infection-----anxiety post strep. Penicillin for dd7 took tic away, left her on it for 4-5 months with good results. Have since had other issues where co-infections were treated with zith with some good benefits, but I think they have been too short----in our case that is.

 

I cannot stress enough about getting co-infections checked via blood draw. DD8 had EBV IGG high titer, I think concurrently with strep a few months prior to blood draw. DD7 had very high mycoplasma IGM titer level at blood draw. We have no idea how long she had this acute infection. My gut tells me it was going on for along time. Many of the answers we have gotten have come from this board and reading others stories. The biggest hurdles for us has been getting the peds and staff to believe us and if you have someone that is willing to be aggressive, I think it is a good thing. If the peds are passive, then move on. YOU ARE YOUR CHILDS BEST ADVOCATE!!!!!