I'mma Say The Thing - PANDAS Sucks

I’mma say the thing.

It’s the thing that I’ve ranted about to a few members of my PANDAS Parents Posse. It’s the thing that some other PANDAS/PANS Parents talk about in Facebook groups. It’s the thing that I’ve heard before (and disagreed with before). It’s the thing that that will likely get me put on some of the PANDAS/PANS doctors’ shit lists, if I’m not already there. It’s the thing that will likely get me on some other lists too (but I’m pretty sure I’m already on “those” lists…sigh). It’s the thing that is a bit nerve-racking to write about and talk about because it’s usually misconstrued, and it’s rarely logical discussion if somebody disagrees. (Quite frankly, I’m a little pissed that I even need to talk about the thing here, and it’s not even THE thing…just the thing.) It’s the thing that needs to be said…and nobody else is saying it out loud…so I’mma say the thing. What’s the point of having a personal blog if you can’t say the thing? I’m also not gonna really rest anyway until I say the thing because I think it needs to be said.

Let me start by emphasizing that me saying the thing doesn’t mean that I’m not grateful for all of the attention that our doctors and researchers give to PANDAS/PANS. I AM grateful! VERY GRATEFUL! In fact, I think that it is sometimes our gratitude and respect that keeps us from saying certain things. Sigh. And I was actually out of the room when the thing was said at the Washington DC PANDAS/PANS Conference, but there was discussion about it. And I have heard the thing before…at the St Louis PANDAS/PANS Conference and didn’t say anything except to bitch to my buddy beside me. Again, I’m going to cite that feeling PANDAS/PANS Parents have of being a bit beholden to the doctors/researchers, which can let the cat get our tongues at time. Grrrr! But I’m digressing here already before I’ve said the thing.

Another thing before I say the thing, I will make it clear that I’m NOT a doctor. I’m saying the thing from my point of view as a PANDAS Parent. A PANDAS Parent that has spent thousands of dollars out of pocket and on insurance costs to recover my PANDAS child to the best of my ability over the last six years (and my son is doing pretty good right now…KNOCK ON A FOREST!!!). And I say the thing knowing that I’ve heard the opposite thing from a very trusted source, and I take that advice for my PANDAS son instead.

And before I say the thing, I want to preface it with a few examples to show my line of thinking here:

Would it be okay for a doctor to ever tell parents to give their diabetic child candy and schedule a diabetic coma? No.

Would it be okay for a doctor to ever tell parents to give their allergic child a peanut and schedule an anaphylactic shock? No.

Would it be okay for a doctor to ever tell parents to give their epileptic child flashing lights to stare at and schedule a grand mal seizure? No.

So we can agree that it’s not okay for doctors to tell parents to intentionally and knowingly do something that will very likely harm their sick child? Yes.

Then why is it okay for a doctor to tell parents to get their PANDAS/PANS child an optional flu shot and intentionally and knowingly schedule a flare of symptoms? Ummm…it’s not okay, right? Ummm…the doctor knows this optional flu shot is going to cause a PANDAS/PANS flare but says do it anyway? Ummm…the doctor says I should intentionally and knowingly get my child the optional flu shot on a Friday and let my PANDAS child flare over the weekend? Ummm …excuse me, but that makes no sense whatsoever to me.

How can it be okay for a doctor to tell me to intentionally and knowingly cause a flare of symptoms in my PANDAS/PANS child from an optional flu shot? These are going to be symptoms like OCD, tics, anxiety, ADHD, insomnia, rages, ODD, urinary frequency, sensory issues, depression, decline in schoolwork, emotional lability, and more. Sometimes the PANDAS/PANS symptoms can even be life-threatening, like anorexia or self-harming actions or suicidal thoughts. There is also no way to know what the combination of symptoms would be or the severity of symptoms or if this “flare” would actually turn into a FULL-BLOWN EXACERBATION. There’s no way to know what measures would be needed to pull the child out of the flare or how long it will last or if the treatment will even be available or affordable since insurance often does not cover PANDAS/PANS costs.

How can it be okay for a doctor to tell me to intentionally and knowingly cause a flare of symptoms in my PANDAS/PANS child from an optional flu shot? How is it not incredibly irresponsible parenting on my part to INTENTIONALLY AND KNOWINGLY INFLAME MY CHILD’S BRAIN? Parents aren’t even allowed to let their kids play at the park alone because that is considered neglect, but I’m supposed to INTENTIONALLY AND KNOWINGLY INFLAME MY CHILD’S BRAIN? And if I’m told my PANDAS kid is going to flare from something that is OPTIONAL, why would the advice be for me to do it? Why would it be okay to tell the parents that you know the child will likely flare from the flu shot and then go on to say that the actual flu would be so much worse? Why wouldn’t the advice be to build up the child’s immune system and take other preventative and precautionary measures to avoid the flu? Yes, if my child got the flu then there would very likely be issues, and I undersand that. But it is NOT a given that the child will actually get the flu if they don’t received a flu shot. But if you give a flu shot, you are definitely exposing them to the flu. AND it’s NOT even a given that the flu shot will even protect the child from the flu anyway! The efficacy of the flu shot is typically dicey, and if anybody is going to know that kinda stuff it’s PANDAS/PANS Parents. (Many of us know a lot of…ummm…stuff.)

How can it be okay for a doctor to tell me to intentionally and knowingly cause a flare of symptoms in my PANDAS/PANS child from an optional flu shot? We’re still fighting for the legitimacy of PANDAS/PANS as a real condition, right? Yes, we are. And we want the Dissenters, Disputers, Doubters, and Deniers, and everybody else to take us seriously, right? Yes, we do. But we’re going to say that we can schedule a flare from an optional flu shot like it’s no big deal, and the kids will be fine? So if I could “schedule a flare” for my PANDAS child…predict it and manage it…if I could set it up from say 1:30am-2:00am on a Saturday night while he was sleeping soundly then maybe…awww, hell no…I can’t even say it…I still wouldn’t do it. A PANDAS/PANS FLARE IS BRAIN INFLAMMATION! But you actually CANNOT schedule, predict, or manage anything about a PANDAS/PANS flare or exacerbation. It doesn’t work that way. If you are preparing for a flare, why wouldn’t you take steps to avoid it completely? PANDAS and PANS are very serious medical conditions, and doctors treating them any other way makes no sense whatsoever to me. We should ALWAYS avoid BRAIN INFLAMMATION, right? That is common sense, right? You cannot have your PANDAS/PANS cake and eat it too. Nope!

How can it be okay for a doctor to tell me to intentionally and knowingly cause a flare of symptoms in my PANDAS/PANS child from an optional flu shot? I personally feel that it’s disrespectful and kinda cruel to tell PANDAS/PANS Parents to intentionally and knowingly cause a flare. Many PANDAS/PANS Parents barely have sufficient medical support when their kids have flares or exacerbations from unexpected illnesses and exposures, let alone scheduling flares. Sigh. And that’s not even taking into account how much we had to fight to get our kids diagnosed and treated in the first place. Some kids are not in good places now because they’ve been sick or were exposed to illnesses and other causes (::cough cough like.other.shots cough cough). It can take weeks or months to get appointments with PANDAS/PANS Specialists if things get really, really bad. To tell these same PANDAS/PANS Parents to intentionally and knowingly cause brain inflammation in their sick children by doing something optional…how is that okay? Do I not have enough guilt and second guess every decision I make regarding my child’s health care already? (And that guilt includes getting my son the seasonal flu shot and two H1N1 shots back in fall 2009, which likely played a role in his PANDAS…sigh. And I’m definitely not the only parent that has this kind of story. I know Parents that are fighting right now to get their PANDAS/PANS kids back after this kind of…ummm…injury. Yes I do.)

Again, I’m grateful to the PANDAS/PANS doctors and researchers. Super grateful! Super, duper grateful! November is Gratitude Month, and I dedicate all 30 days of it to you! Seriously. But you really want me to intentionally and knowingly do something optional that will very likely cause harm to my PANDAS child and inflame his brain setting off a cascade of terrible neuropsychiatric symptoms? I respectfully decline this option.

I want to think this flu shot stuff is one of those things that looks okay on paper, but when the words are actually spoken out loud, they make no sense whatsoever. Not when you are talking to a roomful of folks that know the very darkest days of PANDAS/PANS. Not when you know this roomful of folks fights like crazy for medical care for their very sick kids. PANDAS/PANS Parents and Caregivers spends millions of dollars on medical treatments every year, and we do our damnedest to keep our kids OUT of flares and exacerbations. But now you’re telling me to intentionally and knowingly cause a flare of symptoms that will result my child having BRAIN INFLAMMATION??? I respect you…I am grateful for you…but that makes no sense whatsoever to me. None.

Now, you could explain the risks both ways. Be understanding about a PANDAS/PANS Parents greatest fears. The flu shot is optional, and it is a choice. A choice. Some parents may opt into it and choose to get the flu shot. And some kids may have a minor, scheduled flare. And some PANDAS/PANS Parents may be okay with the knowledge that they willingly inflamed their child’s brain. But if anybody deserves to be supported for the healthcare choices they have to make for their children, it’s PANDAS/PANS Parents. Give us ways to mitigate exposures and fight off illnesses and keep our kids healthy. Make treatments easily accessible (and affordable!) for if the children DO get the flu…or strep or walking pneumonia or mono or a whole host of other illnesses. But to say everybody should get the flu shot??? Ummm…see all of the above.

Okay. There. I said the thing. Whew. And we’re talking about an OPTIONAL thing here…not even all THE other things. Sigh.

And to cover my butt again…I’m not a doctor. I’m a Mom. I’m a PANDAS Mom, and I needed to say the thing. The thing needed to be said.

Love,

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Sarah Jane Alleman 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, likes a good red wine, 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. She is also the Director of Kentucky PANDAS/PANS Support, which strives for more awareness, support, and understanding of PANDAS/PANS. Sarah was a Parent Contributor to the book “PANDAS and PANS in School Settings.” Find PANDAS Sucks on 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.