Help Emma get medical care in NYC

December 2021 was a life changing month for Emma. She suffers from EDS (Ehlers-Danlos), Mast Cell Activation Disorder with Eosinophilia and Postural Orthostatic Tachycardia Syndrome. She has been very stable on the biologic Nucala, Claritin and Pepcid. She was living her best life hanging out with friends, going to in person school and fiercely independent.

She bought tickets for her first concert in Boston which was going to require her to be fully \/ against C. We discussed this at length with her immunologist and I told Emma she needed to make a well informed choice based on her immune condition. She really wanted to go to that concert and do her part in protecting herself and others.

December 18th she received her first dose of the P \/. We premedicated according to her immunologists instructions and aside from a little anxiety, she seemed fine.

In December 29th, just 9 days later, she woke me up in the middle of the night with a heart rate of 180 and we called 911. They were able to bring her down to 157 in the ambulance to 157 with fluids and she was 139-140 in the emergency room. They did a full respiratory swab and she was positive for rhinovirus, which they say can cause a high heart rate. She received 2 bags of fluids and was sent home heart rate still 120-130. Over the next few days we pushed fluids with not much improvement. I went to work on 12/31 as she was ok. I received a phone call from her that her heart rate was sustaining back in the 150’s and had Derrick call 911 again. This time the charge nurse at the ER threatened to call child services on me because I was at work and am a nurse and cannot just run off my floor. I had to wait for my director of nursing to relieve me but I went to the ER and demanded testing for myocarditis which they reluctantly did and was negative. The next few months are a blur with many ER visits for tachycardia, flushing, dizziness and her anxiety is through the roof.

We have had numerous ER visits for flushing and tachycardia, high blood pressure, low blood sugars, sores in her mouth, etc. Doctors are saying this is just anxiety and even let her lay in the mental health holding area at the hospital where she flushed and got bad tachycardia every time she ate. The inpatient adolescent mental health program refused her because she is too “medically complex” for inpatient anxiety treatment. They sent her home again still very sick.

We just finished a week out at Dartmouth where they did MRI, 24 hour urine and labs for anything GI related that would cause flushing and tachycardia with eating and all were negative. Her 24 hour urine for catecholemines showed low dopamine <35 (65-400). There are physical symptoms related to this but the docs shot it down. We were again sent home with an anxiety diagnosis.

Emma has been going to work with me everyday so they don’t call child services on me. That’s not normal.

She has lost 17 pounds. She can only eat chicken, carrots, quinoa, apples and rice crispies without flushing and tachycardia. She is not actually allergic to any foods, but reacts to what seems like inflammatory foods; eggs, gluten, nightshades, artificial sweeteners and food dyes. On this diet, she has slightly improved but is still very sick and losing weight. She uses a wheelchair and a shower chair because of the tachycardia.

I’ve about exhausted all my resources as her medical bills to the insurance have gone over $100,000 and I have to pay 20%. I’ve applied for Medicaid for a secondary and it has not been approved.

I found through a support group there is a neurologist in NYC looking at these things and is able to quickly diagnose and offers ivig treatments which can reboot what we think was an autoimmune nervous system response. His fee is $5500 the day of the visit and you have to pay that out of pocket the day of the visit, plus gas and one night hotel stay. I’m talking to other people he’s helped and nothing but amazing success stories. He does everything there the same day EMG, nerve conduction studies and labs to check for nervous system inflammation. He then consults with the team back home to get the ivig started. Emma needs to go to this doctor and be able to get back to normal life. All the neuros in our area are booking out to next October. This doctor can see her next week. Please help us if you can, even just share on your page and keep Emma in your prayers. Thank you