October 18, 2018

The following text has been copied from a Facebook post on my personal profile that has now been set to private. It is part of a series of posts providing details about the first part of my daughter’s fight with Transverse Myelitis. 

Our amazing friend Nicole Watson has been busy sharing Annadelle’s story and working to raise money for us through a GoFundMe account she created. Her husband, Matt, created this image for the #AnnadelleYeah challenge in the hopes of helping to raise funds for the GoFundMe through a prank challenge.

To participate in the #AnnadelleYeah challenge, you must challenge a friend to a silly prank of your choosing. If they accept and complete the challenge, they ask that you donate $5 to the GoFundMe. If they don’t accept the challenge, they donate the $5. No matter if you accept the challenge or not, you’re asked to challenge another person to a silly prank of your choice.

Nicole challenged Matt to drink a “mystery drink” of raw egg and Sriracha (gross!) of which he accepted. What will your challenge be?

***Thank you to anyone who chooses to participate in the challenge, share our story, or donate. The funds gathered from the GoFundMe are being used to pay our regular bills since we are not able to work and to finance our hospital stay (mostly food which is outrageous here at the hospital). We are being told to expect a lengthy, possibly months-long hospital stay. We are also discussing possible travel to Baltimore for treatment once we leave USACWH.

Over the past few weeks, there have been a lot of reports of Acute Flaccid Myelitis (AFM) being reported on major news outlets. This “polio-like” illness is being reported in several states, although no cases have been confirmed in Alabama.

We have talked with Annadelle’s doctors several times about AFM and all have told us they do NOT believe her diagnosis to be such. They firmly believe she has Transverse Myelitis (TM) and are treating her for it, although treatments for AFM would be identical. AFM is basically a sub-strain of TM, meaning it is much more rare. The percentage of patients with AFM who regain mobility or recover completely are significantly less than TM, so for Annadelle’s sake, we are praying her doctors have not misdiagnosed her.

Symptoms for AFM can be very similar to TM, specifically weakness in one or more limbs, but there are other symptoms of AFM that Annadelle has not had.

From the little bit of research known about AFM, it is strongly believed to be brought on by enterovirus 68. When we were admitted to the hospital, she was tested for enterovirus and was negative. However, she has acquired it during her hospital stay which is not unusual. Many patients with respiratory issues develop enterovirus while they are in the hospital.

With that being said, Annadelle’s case is one of two (that we know of) being investigated by the CDC through the Alabama Department of Public Health. The CDC requested a nasal swab and stool sample to rule out AFM on their own. As of now, we have not heard from the CDC about these results and have no idea how long it will take to receive them.

I have also received several comments or messages regarding the link between TM (or AFM) and vaccines. For those curious, Annadelle did not have (nor has she ever had) a flu shot. She did recently receive her MMRV booster in August, but her doctors have told us a reaction would have happened much quicker than hers and do not believe the vaccine to be the cause of her TM.

Speaking of the cause of her TM- it is a mystery. None of her labs have revealed the cause of this diagnosis, although that is not unusual, either. Many patients never discover the cause especially considering so little is known about TM. They have ruled out West Nile, Cat Scratch Fever, Campylobacter, Lyme Disease, and many other possible causes. We simply don’t know why this happened and we likely never will.

Regardless, I want to stress something regarding these “polio-like” illnesses and the media: DO NOT FREAK OUT.

Literally hundreds or possibly thousands of deadly bacteria and contaminates could hit your child at any minute. If you spent all day worrying about whether or not your child would contract TM or AFM, you’d drive yourself crazy. Don’t let the worry of losing your child or your child getting sick ruin the small amount of time you actually have with them as children.

Hug them, love on them, spoil them, and if you have to change anything, make sure you enforce the habit of washing their hands. Keep a bottle of hand sanitizer with you and make sure they understand the best way to protect yourself and others from disease is through the simple act of washing your hands. It’s that easy!

I hope this post cleared up some of the confusion between AFM and TM that so many have tagged me in as of late. If you have questions, I’d be happy to share the little bit of information I have because, honestly, I’m about as clueless as the rest of the world (doctors included) when it comes to TM.

As usual, I ask for your many unceasing prayers for my sweet girl. 

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.