PANDAS must be becoming more prevalent

[texascatholic]

Hi There...

 

Obviously my mom and dad are aware of the PANDAS (and have seen if first hand when they visited). My mom is part of a prayer chain group.

Yesterday she called up and read to me a prayer request that came through her email stating that prayer was needed for an 8 year old boy who was

just diagnosed with PANDAS and had problems with OCD. The prayer request went into greater detail than I am stating here, but I just wanted to share about this because it seems PANDAS is turning up a lot more these days. I will certainly pray for all of our PANDAS children. I think it's a good then whenever PANDAS gets more publicity and there is more awareness.

 

Blessings,

Holly

[Chemar]

I dont think that it is PANDAS becoming more prevalent, but rather people, especially doctors, hopefully becoming more aware of it, thanks in large part to recent media coverage

 

there was a time when I would mention it and people would predominantly have a "huh???" reaction, whereas I have been pleased to see more recognition nowadays...still a long way to go, but every step in the right direction is invaluable

[P_Mom]

Chemar....absolutely agree. It has been around forever, I believe, but, is just recently being recognized, diagnosed and treated. The number of cases will continue to grow as the disorder is increasingly recognized.

[tpotter]

Totally agree with the others. I am a pediatric OT, and treat very young children. I suspect 5 of my kids as possibly having it. One I described to Dr. C., and she told me to give them her information to them...it sounded like PANDAS to her (child was born with it.) A set of twins and their sister also appeared to possibly have it, and then when the twins got strep in April, couldn't shake it, and one started having terrible separation anxiety right afterwards, I got mom to speak with the pediatrician about making certain they took abx long enough. Today, I went out and saw them after having a week off for vacation, and that child was having terrible separation anxiety again. When I asked if she was getting sick, mom told me she was hospitalized last week. I wrote a letter to the pediatrician, told her my observations and suspicions (the little girl was having a lot of other symptoms today, too, told her about the NIMH statement a few weeks ago, the upcoming trial, the white paper coming out, and suggested that for further information she could call Dr. K (and gave his phone number). I hoped he wouldn't mind my suggesting him, but I figured that would be a good resource for her. I have also given several other families information. I really don't have an "abnormal" caseload that I would see so many kids with possible PANDAS. I just think that in the past, no one knew what it was.

 

I treat another child who pulls her hair out and eats everything (including non-edible objects.) I have seen in the literature where that can be associated with strep, and her mother does the same (diagnosed with psychiatric illness. I have armed her mother with research articles about the correlation, so she can bring it to the neurologist she will be seeing in October (I know the neurologist, and know he is totally into research...he also does recognize PANDAS.)

 

I totally believe that what we are now finding out and identifying as PANDAS and/or strep or infection related is going to blow the lid off of all kinds of previous diagnoses, such as Autism, Tourettes, OCD, ODD, bipolar, etc., etc. I can't diagnose or treat, but I can certainly give people the information they need to find out if it is infection related. My kids laughingly tell me that I think EVERYONE has it (I have told them that I don't think everyone has it...just a lot :-)