Posted by: The Sumaira Foundation in MOG, Proche-aidant.e, Voices of NMO
My beautiful 4-year-old (5 years old now) daughter Jaidyn woke up one morning in late April 2021 with a headache, fever, vomiting, and very lethargic. Her grandmother and I took her to the ER, thinking she simply had a virus and needed some fluids… that’s when our world turned upside down.
Jaidyn’s headaches were getting worse, and she was having AWFUL hallucinations. She went from walking to the potty to needing to be carried and finally having to wear diapers cause she could no longer get out of bed.
She was eventually treated with high doses of intravenous steroids. They were considering placing a feeding tube on the fourth day, but she finally started to show improvement. Thank goodness we avoided the feeding tube.
She was released from the hospital and would continue taking steroids at home. Even though she was getting better, she was like a 1-year-old, her motor skills were way off, leaving her barely able to walk, and she had slurred speech, but we saw small improvements every day. It was such an emotional time for all of us.
A few days after tapering off steroids, Jaidyn woke up with a headache, vomiting, and blind.
We went back to the hospital, and they started her on oral steroids again. We got the result from an earlier test telling us she was MOG positive. Jaidyn was getting worse, and the hospital could not get IV access. The decision was made to place a PICC (Peripherally Inserted Central Catheter) line through her groin, and she was placed on a ventilator. They were able to start her on IVIg. MRI results showed a lot of new brain lesions.
Her sight returned, and she was feeling better after just a few days. Jaidyn stayed in the hospital for another two weeks before being sent home with a much longer steroid taper.
In July, she had just finished the steroid taper, and it started all over again. The headache, fever, and vomiting returned, and she seemed to be acting off. An MRI found new lesions on the brain. She would get another round of IVIg and a final diagnosis of MOG-AD (ADEM/ON).
Jaidyn started monthly IVIG infusions at a local hospital. Getting the mid-line IV each month was something we all dreaded. It was getting harder and harder for the nurses to get the IV. As soon as Jaidyn saw the hospital, she would start to hyperventilate. She was simply traumatized.
There were no Doctors in our area that were familiar with MOG. Although we loved her local neurologist, we knew we needed to find a specialist, not only for Jaidyn’s sake but also for our sanity!
We were finally able to get in and see Dr. Banwell at the Children’s Hospital of Philadelphia.
Jaidyn would have a port placed to spare her the trauma of the monthly “pokes” for her IVIg infusions. Dr. Banwell is working directly with our home neuro doctor, and we feel Jaidyn is getting the best care available!
In April of 2022, Jaidyn had her port placed, and although we were all extremely worried, this has been the biggest game-changer yet! She had her first infusion using the port, and it was like night and day. No screaming or crying, other than us shedding some tears of Joy.
It’s been an exhausting, emotional, and overwhelming year, to say the least. Most importantly, we want to share that Jaidyn is doing well! She is back to her sassy, feisty self and doing all the things that 5-year-old little girls love to do. She hasn’t had a relapse since late July 2021.
To all parents that are early in this journey, our MOG babies (no matter the age) are stronger than we give them credit for. Stay strong, positive, and make sure you are taking care of yourself. It’s easy to fall into a “funk” as a caregiver, but you are important in this journey, so please take care of yourself too!
