I’m not sure where to begin.
My youngest daughter is now 19 and had always been so healthy and active. She became a vegetarian in her early teens but ate an extremely healthy diet. Lots of beans and other protein sources, she exercised regularly, we hiked and went on girls trips, she’s always been my little buddy.
Around age 14-15 she began to have a lot of unusual symptoms. It started with what we were told was Raynauds in her feet. We were told it was nothing to worry about by her pediatrician. Her feet were always cold and purplish.
Shortly after that she started having POTS like symptoms and because I have POTS I recognized what was going on, or thought I did. I got her into Children's National where she was diagnosed with POTS.
Soon after that diagnosis she began to experience chronic pain in her neck and back. We saw an orthopedic doctor, she had an MRI which was normal. She did many weeks of PT which seemed to make her pain worse, she did cupping, dry needling, everything. Her PT noted that she had some hypermobility so we went back to Children’s to be seen at their hypermobility clinic. We waited months and months only to be told she didn’t meet the criteria.
During this time her hands began to burn, they would get so red and it was extremely painful. Her back and neck began to prevent her from exercising and hiking like we used to. She became so heat intolerant that being outside in warm weather was excruciating. Her PCP suggested we see rheumatologist. We ended up seeing 3. The last one we saw was a leading expert in autoimmune diseases at Georgetown. she told us that my daughter didn’t have an autoimmune disease and maybe her hand and feet symptoms are just the way her body is.
Around the start of this year she began to have daily headaches and fatigue. Her PCP ordered a brain MRI and referred her to a neurologist who did an EMG on her arms and legs, all normal. He suggested we try a small punch biopsy to check for small fiber neuropathy, so we scheduled that. While we waited she became more and more fatigued to the point that this weekend she couldn’t get out of bed. I was at a loss, I decided to check her most recent labs, most of which didn’t look too alarming until I clicked on the trends. Around the time her symptoms started all of her numbers started to drop. I could see that her pediatrician checked her iron levels 4 years ago but technically they fell into the normal category and she never mentioned iron levels to us. Her ferritin was 16 four years ago and had not been checked again by any of these specialists.
I called her PCP Monday morning to see if she could be seen about her fatigue and they could not see her. So I purchased an on demand anemia panel from labcorp and thank God I did. We got the results yesterday evening and we sent messages to her doctors. We were both relieved to have an answer as to why she’s been feeling so bad for so long, but I’m also so angry and sad for my girl. I feel terrible that I didn’t catch this sooner. I always checked her labs and looked for things that were low but because no one was testing the right things everything looked normal to me.
2 cardiologists
3 Rheumatologists
1 orthopedic doctor
2 dermatologists
Primary care
brain MRI, spinal MRI
nerve conduction study
physical therapy
trialing meds
Georgetown, INOVA, Children's National
too many blood draws to count
And in all that time no one thought to check the iron levels of a young girl who is also a vegetarian.
But now we move on and focus on getting her well, on getting my girl back.