Day to Day Surrendering - How Rare Disease Can Get the Best of You
Saturday night I was at dinner with my friends and making choices between broiled or steamed lobsters. We shared stories of our children and caught up on our lives.
We talked about my daughter and her health , and I was excited to share a picture of her and her husband leaving for a Halloween party.
This was her first outing in months. She felt good and she had rested all day so she could enjoy the evening.
Later that night , my phone rang and my son in law told me the news.
He was calling from the bathroom at their house, where he was watching over my daughter in the bathtub and he sounded scared.
I immediately put on my calm voice and asked what was up.
He explained that she had been sitting on the couch , speaking with some friends at the party, when she became very tired.
She went to get up, and started getting tunnel vision. She asked the hostess for a place to lay down, thinking maybe her blood pressure was dropping from her POTS.
I asked if she had been drinking or doing any drugs. He said no. Just water.
She asked one of her friends to go get him and he found her on the bed , her left side of her body was in a full on spasms and she was coherent looking at him, unable to control her arms .
He pinned her down so she wouldn't hurt herself. Her right side of her body was flaccid. Too heavy for her to move .
His first thought was to call an ambulance but she said "No". She didnt want to destroy the party or go to the hospital and deal with the trauma of that.
After her body calmed down, they got her in to the car.
When he pulled up ,he got the wheelchair from the house and put her n the bathtub.
Her body was wracked with pain from the spasms and I suggested some magnesium and some Epsom salts.
He gave her a shot of Benadryl and put her to bed.
When she called me the next morning I told her to call the doctor to let her know what happened.
Of course she recommended that she go to the emergency room.
They admitted her and did the usual tests. CT , MRI and EEG
Sunday she had an event that no one witnessed.
Her jaw got locked and her body locked up too.
She told the nurses and the doctor , and they said all tests were normal.
When I spoke with the doctor ,
I explained that she had a stiff neck all week. I explained that she didnt run a fever, because
of PIDD. I explained that she had been in the hospital for 5 weekends in the
past few months because of extreme pain, finally removing her gallbladder five
weeks ago that pathology showed scarring and a lymph node that showed bad
sclerosis.
I begged him to look outside the box.
That every time something strange happened it snowballed in to a catastrophe.
He called in infectious disease (the same team that missed her sepsis twice) and nothing was
resolved.
She is being released today.
No answers.
No direction,.
Oh, except a psychiatrist recommended a Ketamine clinic.
Some days rare disease can get the best of you.
Carri Levy is the creator of Behind the Mystery Rare & Genetic airing on Lifetime TV.
Ehlers-Danlos Syndrome & Rare Diseases Advocate, NW Rare Disease Coalition (501.c4) & Connective Strength (501.c.3) Board Member, Department of Defense Congressionally Directed Medical Research Program Consumer Reviewer
5 年POTS is so poorly understood by doctors and even less so by the greater public. Sending gentle hugs to your daughter, as a POTS Patient and star of many syncope episodes and neurological symptoms, myself, it’s so hard to have very little warning of symptoms and often little recourse to resolve them. Few people believe you when you say, ‘Don’t worry, Happens all the time!’ POTS Patients are one of the most expensive patient populations as we often end up in the ER, unable to find a clinical treatment, desperate for any treatment. We need to treat POTS Patients preventatively so these patients don’t end up in ERs with unnecessary injuries from their POTS symptoms. Research to understand the spectrum of symptoms and autonomic dysfunction in every system in the body is desperately needed! Thank you so much for sharing, Carri Levy ???? #IGotDys #Dysautonomia #POTS #Syncope #POTSPatientAdvocate
Founder of Texas Rare Alliance | Author of "Hunt for a Cure: An Unexpected Adventure to Save a Life" | Mom to Hunter, an amazing 12 year old with Spinal Muscular Atrophy Type 1
5 年Thank you for sharing to advocate Carrie & Ilana. We need more research to make sense of events like this that leave medical teams at a loss for a definitive reason.