Just wondering : How many are we - and where are we from ?

[PANDAS_Denmark]

Hello :-)

 

First of all let me introduce myself : I´m the mother of a six year old boy with PANDAS. My son has been sick for allmost two years now, but was only recently given the diagnosis : PANDAS, as the first child in Denmark.

 

My child, having both tics and OCD, is treated with immunoglobulin, penicillin (Primcillin, then Spectramox - and in the near future : Zithromox), therapy, vitamins and minerals and fish oil.

 

Autumn, winter and spring is ######. My son being sick with strep over and over again, every time with more and more severe tics and OCD. Summer is much better, as you may have experienced too ? :-)

 

I am convinced, I was a "PANDASchild" myself; but have no longer the tics or OCD. As an adult I´ve had disseminated sclerosislike symptoms instead, and was recently given the diagnosis : MDEM (Multiphasic Disseminating Encephalomyelitis), an autoimmun disease which in my case is triggered by ... streptococcus.

 

I am so happy to have found this forum ! - and very greatfull for all the kind information you are bringing and sharing here ! It´s allready been a great help !

 

Reading here (and on other sites and forums concerning PANDAS), I was wondering : How many are we ? That is : How many PANDASchildren are there ? And/or : How many concerned parents are we ? And where are we all from ?

 

Do any of you know or have an idea ?

 

Yours sincerely -

PANDAS_Denmark

[Chemar]

Hi PANDAS_Denmark and welcome

 

I think we would all be astonished if we knew the actual numbers of PANDAS kids......and also especially the ones who have PANDAS and are being misdiagnosed!!

 

I am so glad that we are able to provide a database here of experiences by parents on this PANDAS journey.

 

all the best to you

Cheri

[Dedee]

What I find so astounding is that requests for research grants are being turned down on the basis of "not enough children affected by this illness". I agree that know one has any idea how many children are mis-diagnosed and go untreated and are left to suffer. I believe with more physician education the numbers would be scary.

 

Dedee

[PANDAS_Denmark]

What I find so astounding is that requests for research grants are being turned down on the basis of "not enough children affected by this illness". I agree that know one has any idea how many children are mis-diagnosed and go untreated and are left to suffer. I believe with more physician education the numbers would be scary.

 

Dedee

 

This is exactly why I find the question interesting : Research grants are being turned down, very few doctors knows about the disease - and the parents have to use more hours than they have (with a sick child) to find the necessary information about tests and treatments. And when finding (AND printing) the information the parents have to struggle too - over and over again - to have their children tested, diagnosed - and treated.

 

If we are many enough, we should be able to - not only share the very important and usefull information with each other here but also - spread the information further on and put attention to the importance of research in this horrible and disabling disease.

 

PANDAS_Denmark

[michele]

We are from N. Canton Ohio. My son is five. He has PANDAS/ PITANDS. We are currently trying Pennicillin V treatment prophylaxis.

Michele