I have kind of been hesitating to post an update on Sam. It seemed we were on a good track and she was doing better, until she wasn’t.
Last week was a full moon. She had 4 appointments 4 days in a row and it was Emma’s birthday and Tom’s anniversary. So, it may have been a perfect storm of stress and sadness.
Sam has still been working so hard. Now adding Physical therapy to occupational therapy each week, as well as daily exercises at home. She has seen her therapist, Kate, and Dr. Holmes. She was doing much better physically, being able to do things at OT she hadn’t. She was doing better with her fears as well. In the last two weeks her gait is off a lot again. Navigating the stairs has been more difficult, General fear and not eating have all come back with vengeance. We have tried to adjust her medicine and have been able to work with her OT and therapist.
I am continuing to try and find the best and most appropriate help for our girl. After 4 months we aren’t seeing much improvement. We have been working with the FND diagnosis, only to find out this week it can only be diagnosed by a Neurologist. 😳. So, in order to get into Behavioral Psych at children’s we need a diagnosis from a Neurologist. I found a Neuro doc who works with the movement disorder clinic and Sam will see him April 5. She will also start in the Eating disorder clinic being treated for ARFID- Avoidant restrictive food intake disorder on March 27.
We are at a loss for our girl as she has lost muscle tone in her legs and is so weak. Is the weakness from lack of use or is the lack of use from weakness? Is the anxiety from FND or is it not even FND and something else is going on? I have been doing some research and just reached out to her pediatrician about a possibility of a vitamin b12 deficiency. We know something is going on. Our girl hasn’t been able to walk normally since November. She went from running, jumping and playing multiple sports, to barely able to walk. We have been to the hospital, the doctor and 3 different therapies. Praying the next few appointments can bring answers, with simple treatments and nothing scary or “bad”.
We have been purchasing skincare and makeup each week as a prize for hard work at therapy. We have found her a piano teacher to start next month. She is so frustrated and sad at what she can’t do, we just want her to find joy in things she can do. We work everyday to find high calorie foods that she will like and try to enjoy.
We have started vitamins to hopefully offset those she is missing in her diet. We pray that someday she just wakes up and is as she was back in November knowing that isn’t realistic, we will continue to research and work to figure out what is going on and how we can help fix it.
