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.
We took a stroll around the hospital today. We didn’t get to go outside with it being so cold but we promised her we would go as soon as the cold front passed. I took some pictures of the outside of the hospital on my way back from showering this morning so she could see it.
We have a new doctor today- Dr. Goslings. She is up to date on Annadelle’s case and has discussed our exit plan with us. She went ahead and had us start counting Annadelle’s calories so we can remove the duo tube. Hopefully that will happen by Monday. We have also weened methadone once more, so only one more step down until we are off of it. Hopefully the only medicine we will have to go home on is Gabapentin.
We have had a lot of people ask us about the diagnosis of AFM from the CDC so I wanted to take a second and explain our thought on it. Keep in mind we are not medical professionals, but we have spent A LOT of time researching TM and speaking to parents of children who are also diagnosed with both TM and AFM. We have also spoken extensively with our doctors here at USA Health and with Dr. Ness at UAB who has been treating these cases for most of her career.
With all that being said, we do not believe Annadelle to have AFM for several reasons.
First, her neurologists specifically ruled out AFM early on. We asked about AFM several times and each time we were assured her case presented differently than AFM, mirroring TM more than anything. The largest indication she has TM and not AFM is that her MRI showed abnormalities in the white matter, NOT as much in the grey matter as would be seen with AFM.
Second, it is our understanding that AFM is believed to be the result of enterovirus, something she did NOT present with upon arrival to the hospital. It was not noted in any of her lab work including a spinal tap given 3 days after we were admitted. She did develop enterovirus while we were in the hospital, but that is not uncommon at all. It is just one of the viruses on the long list of possible hospital-acquired infections you can get.
Third, her onset of symptoms was much different than that of a typical AFM case. It was several days before her loss of movement began, something that is usually seen in TM.
Like I said, we aren’t medical professionals, but I think it is important to know the CDC made their ruling based on stool and blood samples, not on a description of symptoms or reviewing the MRI results. They don’t even know what causes TM or AFM for sure, so I’m baffled as to how they can look at labs and determine a different diagnosis than her doctors and a doctor we consulted for a second opinion.
I’m also not sure why the Alabama Department of Public Health has chosen not to release the area we are in. I’m assuming they want to avoid mass hysteria of parents who don’t understand this condition or how it is acquired and treated. If you happen to speak to someone about AFM or TM, please ensure them it is in no way contagious. The best way to prevent this from happening to your child is to practice proper hygiene and hand washing techniques, as is the same with many other diseases.
Thanks for all of the support. Please continue to pray for a complete recovery. We are believing God in complete restoration and healing!