Why are PANDAS kids a minority?

[GraceUnderPressure]

I believe a large part of what's going on has to do with the fact that our western diet has been deteriorating to a point that immune dysfunction is becoming increasingly more common.

http://www.telegraph.co.uk/health/healthnews/7922504/Junk-food-diet-puts-children-at-higher-risk-of-allergies.html

 

Kids today have to deal with more negative environmental exposures while having less immune capacity to deal with it = increased vulnerability to pathogens.

 

My diet was convenience/junk food for years before I got married & started having kids. All 5 of my kids have some degree of issues with their immune systems. Two of my kids (1st born & 3rd born) who received in utero mercury exposures because of dental work are the most damaged - insufficient resources available to repair the damage, I'm betting.

 

My last 2 kids were fortunate that I had become painfully aware of what my lousy nutrition was doing to my babies & they are the least messed up. My 5th child was born after I had decided no more vaccines until I know what is going on with my kids' immune systems - he is the healthiest of the bunch (which runs counter to the whole "cumulative genetic damage to older parents" theory).

 

My ds with TS/OCD has always had an under-reactive immune system - he has probably had strep multiple times & I had no clue because he did not have typical symptoms. (And similarly, I suffered with yeast for years because I did not have the typical symptoms so the doctor never clued in & I didn't learn about it until I had just had my 3rd baby) There seems to be a mentality out there in the mainstream unreceptive to the possibility that one can have a disease without manifesting the typical symptoms.

 

Because the dietary damage to our immune systems is a relatively recent phenomenon, I suspect that the "shades of gray" type of infections that many of our kids are experiencing is relatively new, too. Unfortunately, being on the forefront of a new frontier is rough going.

[norcalmom]

IMO pandas kids are not minirity, pandas aware doctors are. Perhaps extreme manifestations are rare, but I think that we are living on the cusp of a mental health revolution.

[Fixit]

IMO pandas kids are not minirity, pandas aware doctors are. Perhaps extreme manifestations are rare, but I think that we are living on the cusp of a mental health revolution.

 

yes..the pandora's box

[cobbiemommy]

I am just wondering why PANDAS kids are assumed to be only a very small number of those who have OCD & Tourette's? As I am looking over all the stuff on it, it seems reasonable to me that it could be the most common cause.

 

I think Kimballout hit it on the nose.

 

The more I live, read and research through this PANDAS journey, the more convinced I become that inflammation is a contributing factor in nearly ALL ills and that lots of kids and adults who suffer from OCD and Tourette's have inflammation, infectious triggers and/or immune modulation problems as a part of the disorder picture. We probably have to be genetically predisposed, and maybe stage of life (hormones) play a role, too, but it seems like a huge cop-out to me now to observe a set of behaviors (OCD or Tourette's), slap a label on it and tell the person to pop this or that psychiatric med, accept the label, get some therapy, and get on with your life.

 

 

 

Now it is my mission, and my honor, to present information and opportunity when I hear about another kid with one of those diagnoses for whom no further investigation has been considered or undertaken. I don't have much faith in the mass medical community, but I do believe that most parents of kids like these, once given some information and support, will follow our leads, stop taking "no" for an answer, and seek additional answers and help for their kids.

 

We've just gotta keep spreading the word and supporting one another!

This is so true. I just had a breakfast meeting with a mom who has an autistic son that is getting worse instead of better. I didn't know she was going to be there or I would have been better prepared, but I did mention PANDAS, this webgroup, Dr. K's webpage, Dr. Swedo, and much more. She is studying to be a nurse and when I said Basal Ganglia, her eyes lit up and she had an "AHA Moment". I feel like we are preachers and teachers of a new way of looking at illness.

[norcalmom]

My pandas son has 15 cousins on my husbands side alone. Several years ago one was diagnosed with TS, add several years before that. They are controlling with drugs(don't know what.. But one for ADHD one for ts). After I got our sons cunninhams test back, I sent them info and had to convince to take the test. They didn't really want to, they have consulted with some touretts expert and are pretty happy with sons current medicines.

 

I finally talked them into taking the test, results back today.

Cam Kinasae ... 181.

 

They wouldn't even know about pandas if not for me. He has along history of strep, snoring, little sleep. I am not privy to all the details but I've heard my inlaws talk about

those for years. He will be 14 soon.

 

Do I think this is rare? Not on your life! I think the NIMH is sitting on a powder keg.

[EAMom]

IMO pandas kids are not minirity, pandas aware doctors are. Perhaps extreme manifestations are rare, but I think that we are living on the cusp of a mental health revolution.

 

yes..the pandora's box

 

or is it the pandas-ora's box?

[EAMom]

 

Do I think this is rare? Not on your life! I think the NIMH is sitting on a powder keg.

 

Yup...not quite so rare, just rarely diagnosed.

[EAMom]

I hear you, Amy. Personally, I think the extreme ("exorcist syndrome") versions of PANDAS are indeed rare (thank goodness): this is what my son had, and it completely freaks the average M.D. out. As you say, they're not used to seeing this, and the severe psychiatric symptoms throw them way out of their comfort zones; they just want your child out of their office ASAP!

 

I wonder about the milder cases, though, which I suspect are far more common. For example, I've read that more than a 3rd of school-age children will develop tics at some point during their childhood, but these are usually transient and resolve on their own. Nobody knows why. Is this a post-strep reaction? And are some milder cases of OCD, tics, etc., related to post-strep autoimmune reactions that just aren't as out of control as the "exorcist" kids? If it's milder, these children might get along okay with traditional treatments (SSRI's, anti-tic meds, CBT/ERP therapy, etc.) and never identified as PANDAS.

 

It's a mystery....

 

 

 

I completely agree with you WD!

 

I honestly wonder what would have happened if our dd hadn't had 2 tooth extractions (for orthodontic reasons) within 1.5 months of her untreated smoldering (a carrier?) strep infection. Before the tooth extractions, we had tantrums, emotional stuff, anxiety...but nothing became "full-blown" until after the tooth extractions. In a sense I'm glad things got bad enough since then we finally (after contacting 20+ doctors/psychiatrists) found out about PANDAS (we had no idea our dd had strep at the time).

 

I suspect without the extractions causing the worsening of symptoms(either via stress, or the release of strep into her bloodstream), that her behavior issues would have slowly smoldered along undiagnosed and the true underlying issue (strep, autoimmune dz) would never have been identified and properly treated.

[EAMom]

I hear you, Amy. Personally, I think the extreme ("exorcist syndrome") versions of PANDAS are indeed rare (thank goodness): this is what my son had, and it completely freaks the average M.D. out. As you say, they're not used to seeing this, and the severe psychiatric symptoms throw them way out of their comfort zones; they just want your child out of their office ASAP!

 

 

Yup, got that after tooth extraction #2. Apparently dd freaked our ped out as we were asked to leave b/c we were "disturbing the other patients".