Parenting or Caring for Someone with EDS

“There is something wrong with her.”

Within months of giving birth to my second child, a patient and calm baby girl, her daycare provider began to tell me something was wrong with her. “She is too loose,” Judy told me. “Babies cling to you when you hold them on your hip and she is like a bag of rice.”

I took my baby to our family doctor who said she was fine. A few months later Judy took me aside and insisted, “I have had more than 40 infants in my care and something is wrong.” This time our family doctor referred us to a pediatric neurologist at the local children’s hospital. I took her myself, thinking the family doctor was right and Judy was over-concerned.

What followed was a nightmare visit with a pediatric neurologist, who told me she was in the bottom 2% of 10-month-olds for large motor skills. Something was very wrong. Horrible genetic conditions were mentioned. Nerve biopsies ordered. The nightmare began.

Infants and toddlers need their bodies to learn. They learn through touch and exploration. Physical therapy was not covered by our insurance and would cost about $24,000 for the first year. My salary that year was $27,000, if I worked fulltime, which I did not. With two small children, I worked halftime.

I stopped sleeping. Sometimes my stomach would hurt so bad that I laid on the cool tiles of the bathroom floor and prayed to throw up to ease the pain. Elle just sat carefully in place and played with the Tupperware.

Things got better. The Saint Paul Public School system sent a physical therapist to us for FREE. Her name was Alice Wachter and she is high on the list of “saints for my life.” She taught Elle to move, to roll over and to reach for things. She came to our home twice a week for almost two years, until Elle managed to pass basic toddler movement tests.

Sometime after age two, a Chiropractor, Dr. Matt Caron, offered to adjust her for free. After the second adjustment, she took a step off the curb, something she had never been able to do.

Even getting a pediatric neurology second opinion visit WITH insurance took almost a year to schedule. This time I took my mom for support. The second pediatric neurologist asked my mother at the visit how I was physically as a child. After telling him that I learned to ride a bike at nine, to walk at three, and was always so clumsy, he said he had seen this in families before and that the baby would walk but she would never be chosen first for the basketball team. She has the “clumsy and awkward genes,” which are not fatal. I was so relieved I later ran into the parking meter pulling the car out of the University hospital ramp. After all, I was clumsy and awkward and never picked for a team sport. And I am fine.

She did learn to walk and then run (sort of). She was not great at sports but she was happy. Until she turned nine. A counselor called us from summer overnight camp and said they did not usually call but Elle insisted. We drove all night and picked her up. At the doctors the next day, she said her stomach hurt and she could not sleep. They diagnosed a UTI and anxiety. I knew this was not quite the truth but did not know what else to do. For the next 18 months, she would not go overnight anywhere. She slept walked and had night terrors. Her stomach hurt. She got lightheaded and sort of “fainty” at night. She had growing pains that made her sob quietly in bed. She became fearful. The docs scoped her for GERD – inconclusive. She never slept through the night. She slept with me. Her neck hurt. Her head hurt. She hurt. About 18 months later, it kind of cleared off.

She had another spell almost ten years later, when I had to take her home from her sophomore year in college as she was so mysteriously sick. Her stomach hurt, she could not breathe, her legs hurt, her neck and chest hurt and she was so afraid. I thought I might be losing her or that something terrifying like MS was starting. After many tests, her doctor finally told me to put her on antidepressants and antianxiety drugs. I just knew this was not the right course for her.

A chiropractor put her on a strict diet – no gluten, no dairy, corn, soy, etc. She was given a LOT of supplements. Within weeks she started to sleep and the anxiety and pain subsided. Within six months she was completely back to her curious and active self.

Again, ten years passed and she was doing graduate work in Iowa. She called me one midnight, saying she was going to the ER. She had passed out, and was very sick. We jumped in the car and drove down to bring her home for a few days. She went back on her strict elimination diet, added magnesium and B12. She changed her schedule for more rest. She kept going to school. It subsided.

A few months later, I had lunch with a friend who told me she and her brother had Ehlers-Danlos Syndrome: EDS. When she described it, I thought, “that is the thing Elle suffers from.” As I thought about it more, I knew the many weird issues I had over the years were also a fit.

I had never heard of it before. No health care provider, chiropractor, massage therapist or doctor, feeling how loose our joints were and how velvety our skins, seeing our easy bruising and joint subluxations, had ever mentioned it. One time my rheumatologist told me I had the hip flexibility of a 19-year-old ballerina, but never told me that was strange in a 49-year-old woman.

This past year Elle went in for genetic testing: hEDS. The counselor was a rockstar, talking us through all of the issues and tests. I was halfway through my masters in herbalism, and so tried to look up herbal remedies that might support people with hypermobility syndromes. There is almost nothing. And as you probably know, there is not a lot that the medical community can fix either. I decided that I wanted to share what I know with you.

As you know, I am not a doctor; I am an herbalist. Please know this is not medical advice, but merely information and ideas that may be of help in living more comfortably in a hypermobile body. This information is not intended to take the place of personalized medical counseling, diagnosis and/or treatment by a trained physician.Herbs and other botanicals are presently classified by the Food and Drug Administration as foods, not as medicines.