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.
Dr. Merritt came by to see us today at our request. We wanted to get an idea of our plans for next week before everything slowed down for the weekend.
She explained that we still have a few things to do before leaving, including weening the remainder of the methadone. She is on the minimum dose so they are stretching it at 12 hours, then 24, then off a day. That should happen over the weekend. She also has to eat enough that she can come off the duo tube. Right now they are giving her feeds at night and taking her off feeds during the day. She is on 65ml/hour overnight. I explained to all of her doctors that they will never see her eat enough that they will be happy with- she is a grazer and eats like a bird. She will go several weeks barely eating anything, then suddenly eat and eat and eat. That is her nature. To see her eat an entire bowl of mashed potatoes was pretty much unheard of at home. I think Dr. Merritt understood what I was saying because she agreed that every time she came in to see Annadelle, she was munching on something. She eats all throughout the day, just not a lot at one time. Hopefully that will not keep us from having the duo tube removed Monday or Tuesday.
As far as plans to leave, Dr. Merritt says we are looking at between Tuesday to Thursday. Praise Jesus!!!
On a side note, we received word today that the CDC has officially listed Annadelle’s condition as Acute Flaccid Myelitis (AFM) and not Transverse Myelitis (TM). AFM is the condition many of you may have seen on recent news reports as a “polio-like” illness affecting young children. We did not receive an explanation as to why the CDC has ruled Annadelle’s case as AFM. Her onset of symptoms and MRI results are classic TM characteristics, so…
While the CDC states there is no treatment for AFM, our doctors here have told us the treatment for AFM and TM is exactly the same. That includes steroids, IVIG, and plasmapharesis. Annadelle has had 3 rounds of IVIG and may possibly receive another round next week depending on what Dr. Maertens wishes to do. Personally, we have noticed the greatest improvement not after IVIG, but instead after a large dose of steroids.
Please continue to pray for us as we are not excited about the diagnosis of AFM. We are currently seeking a third opinion from Johns Hopkins Hospital in Baltimore.