Thing 2 has had a setback, again. We believe it was triggered by a huge cyst in one of her sinuses, which turned into a massive sinus infection and another ear infection. Not to mention all the antibiotics and steroids. We are hoping to have it drained in the near future.
Poor thing is dealing with severe pain in her sinuses, her face swells on that side, dizziness, and constant headaches. It has affected her eating as she likes spicy foods. What happens when you eat spicy foods? Your nose will run. Hers cannot as the cyst is blocking the drainage to the nose, thus just causing more swelling. Ug.
In addition to that, she’s had neurological symptoms. Her Tourettes was out of control in October, we thought she was having seizures, she forgot how to do almost all of her school work routines and even how to play her instrument (she did regain her ability to play, but the rest is still suffering). It’s been a really rough time. She even couldn’t perform ADL’s for a couple of weeks. Doctors wanted her hospitalized, but our local children’s hospital converted half the wards into Covid wings. Because she was having neurological and psychological symptoms, they wanted her in the psych part of the hospital, but they were shut down to teen patients, sending all others to strictly psych hospitals (which doesn’t help when symptoms are caused by medical issues).
Answers, Finally:
However, on the bright side, with all these urgent appointments with specialists, we FINALLY have a diagnosis for her wax and wane symptoms. Functional Neurological Disorder. We have been looking for a diagnosis for 12.5 years.
“We know very little about the brain. We know about connections, but we don’t know how information is processed…”
Neurobiologist Lu Chen, PhD
The brief description is Functional Neurological Disorder is a disorder in the somatic nervous system, that’s the system where the brain and body communicate for sensory input (the 5 senses) and voluntary movement. They’re not sure why there is an issue on the somatic nervous system, but each person has their own triggers. Some people have this reaction in result to emotional stress, some to physical stress or illness, others to medications, some to heightened emotional states (like excitement). Thing 2’s triggers are illness and some medications. In her case, imagine that you would have pain from an infection in your ear. She often doesn’t realize there is an issue until it ruptures. While she should have a fever, she rarely has one anymore, however, she trades her normal illness symptoms for neurological symptoms and psych issues. It makes no sense, but the neurosciences is in its infancy compared to other fields.
Now, over the years it was NOT classified as a neurological disorder. Remember hearing about “female hysteria”? Current neuro specialists and those who study medical history believe it was Functional Neurological Disorder. Conversion Disorder? Also FND. The problem is because it was classified as a psychiatric disorder for so long and it is being transferred to being neurological, it still carries the negative stereotypes. Spread awareness. Remember, epilepsy was once thought to be hysteria or demon possession.
Because FND has an unknown origin, there is no treatment or cure. People will have relapses that can last from days to years. The only thing that can be done is treat each symptom individually. Therapies out the wazoo, medications for the physical, neurological, and psych symptoms, assistive devices if needed. It can be as disabling as Multiple Sclerosis and because of the stigma, very lonely.
Other news:
Thanks to autoimmune issues, I’m having to completely change my diet. So if anyone needs some tips about minimal salt, 0 saturated fats, and 0 added sugar, but NOT have your meals be depressing and taste like dogfood, I’m relearning how to cook.
This meant I was struggling for Thanksgiving. I gave up and made a buffet with tacos, burritos, and fajitas. Everything I could have except the full fat sour cream and the cheese blend. I didn’t make the cheese, sour cream, or tortillas, but I made everything else. I made the taco meat with turkey, so that counts, right? Tilapia, shrimp, mango salsa (don’t knock it), guacamole, salsa… It may be our go to Thanksgiving meal. LOL All the kids ate it.
Now, what to do for Christmas?
When is the next post?
I’ve been working on an informational post by request about health insurance (blech) and things you can get through them or via other means. The most common question is iPads. Since many insurance programs start at the beginning of the year, I’m hoping to dish the skinny in a day or two. Please leave a comment with any questions you may have and I will include it.
Tiddlywinks and Hijinks 