Last week I made a wish on the PANDAS Sucks Facebook Page. I wished that everybody that needed help with PANDAS/PANS could just get help from their doctors. I decided to build on that first wish and make two more PANDAS Wishes. There are so many more PANDAS Wishes I could make, but genie’s usually only give you 3. (And I’m giving up all the riches I could wish for just for you. But really, if my son didn’t have to suffer from PANDAS, I’d consider myself rich beyond measure. I’m sure any PANDAS/PANS parent would. <3 )
Okay…here are my 3 PANDAS Wishes:
1. I WISH that everybody that needed help with PANDAS/PANS could just get help from their doctors. The roadblocks are incredible. I don’t know why it is so difficult. PANDAS/PANS is not that new of a medical condition, and sources exist for doctors to get the information. It’s’s not logical that it is so difficult to get the kids accurately diagnosed and appropriately treated. I wish I had answers, and that there were easy solutions. I know there are a lot of parents in desperate times with their children right now. I have been there and know what it’s like. I could be there again tomorrow because with PANDAS/PANS ya just never know.
2. I WISH that the Dissenters, Disputers, Doubters, Deniers would just stop already. Granted they have been quiet lately, but that specter is always out there and haunts us. These people have slowed down our progress and have diluted the acceptance of PANDAS/PANS. Imagine if those who DID seem to agree with the initial premise of PANDAS when it was proposed had not reversed their positions like it seems they did so many years ago. How far would we be by now? Imagine if there had been no shoddy research decrying PANDAS’ existence and no articles about thinking horses instead of zebras and no CANS paper crap. It was 1998 when the first paper was published about PANDAS. If all the “controversy” had never happened, we might have a map of the causes and a clear path for treatment or maybe even a cure. That’s 18 years ago!!! Having to waste so much time on merely proving PANDAS/PANS existence is beyond annoying. Yes, let’s continue to do the research and get more specific and keep learning. But just freaking agree that PANDAS/PANS exists and the established treatments work and that it is just not that rare…but rather it is rarely diagnosed. And the fact that it is rarely diagnosed…well, that is thanks to the Dissenters, Disputers, Doubters, Deniers. That’s some kinda legacy to leave fellas…seems an odd choice when the code is that you should first, do no harm…NO HARM! In my book, these stupid political power plays harm kids all over. It harms parents too. It harms entire families. They just need to stop.
3. Mostly, I WISH that none of us were dealing with the awfulness of PANDAS/PANS. There really is no way to adequately describe the effects on families. PANDAS/PANS permeates every facet of the lives of those living in its hell. And if by chance there is a certain area that it does not affect, it actually does affect it by the stark contrast of NOT affecting is, and the waiting until that area of your life is overtaken by PANDAS/PANS and swallowed up too. No child deserves to have their childhood stolen by PANDAS/PANS and to be held prisoner by the brain inflammation and the various symptoms that manifest. No parent deserves to lose their parenthood to this condition either. A PANDAS/PANS parent is full of doubts and second guesses and wondering if s/he is doing the right thing for her/his child. Yes, every parent does that and constantly wonders if they’re doing a good job. Special needs parents, which includes PANDAS/PANS Moms and Dads, take all of that worrying to a black belt level. I REALLY WISH PANDAS/PANS DID NOT EXIST. I imagine that is the wish everybody would make. And to take it further, I wish we could wish away all the childhood illnesses (and adult illnesses too…there’s too much sickness in the world!). Sure, we can find silver linings in it all because we have to…we have to stay positive and have hope galore. But seriously, I wish PANDAS/PANS never happened to any children anywhere at anytime in history. And if that wish just isn’t possible since PANDAS/PANS already exists…then I WISH for a perfect understanding of the condition so there can be an immediate diagnosis, appropriate treatment, and quick resolution for each and every PANDAS/PANS child afflicted AND an eventual cure!
What PANDAS Wishes would you make if a genie were to grant you 3 of them? I guess if we made that third wish first that we could still make two more wishes for riches and more riches. I must remember that if I ever happen upon a funny looking lamp. Eradicate PANDAS first…THEN make the rest of the wishes for all of the riches. 😉
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Sarah is a PANDAS Mom to her awesome son, Jesse. She spends much of her time on Facebook, making to-do lists, and listening to music, especially Depeche Mode. She drinks a lot of coffee and has been known to hide chocolate in her pantry. Sarah really thinks PANDAS Sucks (the autoimmune disorder, NOT the bears!). PANDAS Sucks exists to tell the collective story about PANDAS/PANS. Sarah wants to empower other PANDAS Parents and let them know they’re not alone. See also Facebook, Instagram, Twitter, and Pinterest.
Note: Please do not ask for doctor referrals or specific medical advice. This blog/web site is for info and support purposes only. I’m not a doctor.
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