I Have Fibromyalgia/ Chronic Fatigue Syndrome, but it Doesn't Have Me!
My Children & Pediatric Fibromyalgia
(My kids being evaluated by R. Paul St. Amand, MD, Fibromyalgia Specialist and Founder of the Guaifenesin Protocol, Marina del Rey, CA, and Melissa Congdon, MD, Fibromyalgia Specialist, trained by Dr. St. Amand, Mill Valley, CA.)
What Were the First Signs and Symptoms of Pediatric Fibromyalgia *&*
Reactive Hypoglycemia that You Saw in Your Children?
Alex began walking on his toes from the get-go. He also had tight heel chords and growing pains in his legs. I remember asking both Grandmas if this was normal. My "gut" feeling told me that it was not.
When he was three and a half, he would go outside to run with the kids, but after a short while, of playing —BAM—he would lie down wherever he was and have to rest—immediately.
As a first-time mother, I went to the grandmas and asked their advice. They told me it was normal behavior. My "gut" instincts again, told me otherwise.
By four years old, I was 90% convinced he also had fibromyalgia, but I didn't want to "open up that can of worms" here in Michigan, with the pediatrician, so I asked the pediatrician to refer us to a pediatric physiatrist (pain specialist.) He did.
Due to some bullying in kindergarten, age five, we decided to enroll Alex into Karate lessons after school. We thought that this would be a great way to get him to learn discipline and how to defend himself. We thought that he would love it.
But, at each lesson, after standing for ten minutes, Alexander would politely raise his hand and announce to the teacher and the class, that his legs hurt behind his knees... and would he...please, be able to sit down.
This was another clue to me that something wasn't quite right. I could see bits and pieces of myself in him as a child.
I had pediatric fibromyalgia as a kid but, I had no idea, until I was thirty-three years old and officially diagnosed. Suddenly, my life and all of the strange pains, headaches, and tiredness that I had had growing up made sense to me.
When Alex was five, we went to the pediatric physiatrist that had been referred to us. This doctor immediately diagnosed Alex with tight heel chords, and flat feet with pronation at the ankles.
He had Alex fitted for leg/foot braces to wear at night and orthopedic inserts for his shoes during the day. He also wrote a script for physical therapy and occupational therapy. We began those therapies right away.
This doctor also sent Alex for an MRI of the brain, for psycho-neurological testing, for a consult with an orthopedic surgeon, and a rheumatological blood panel was also ordered on him.
(I was thrilled with the rheumatological blood panel which was ordered because we needed THAT to rule out other medical conditions that mimic pediatric fibromyalgia!)
When I questioned him about pediatric fibromyalgia, he pointed his finger at me and said, "Your son does NOT have pediatric fibromyalgia!" He then proceeded to looked up the symptoms for Chronic Fatigue Syndrome and said he DID FIT that diagnosis!
I held my tongue and did not mention that Dr. St. Amand believes Fibromyalgia Syndrome and Chronic Fatigue Syndrome are one-in-the same illness!
Instead, I came home and booked a flight for June to Los Angelos and an appointment with Dr. St. Amand.
I wanted an excellent second opinion. I couldn't wait until the school year was finished, so we could go to Los Angeles, and get Alex checked.
Reactive Hypoglycemia in Alex
Alex was normally a very happy-go-lucky child. He was active, but not hyper active. He was usually very willing to do what he was asked to do and always wanted to cuddle.
Sugar was the game-changer that completely altered his behavior and created this wild, non-compliant child. Sugar was also my first clue that he had the reactive hypoglycemia like I did.
Next, came the migraines for him. Five years old and knock-down, drag-out headaches that sent him to bed without any supper, as he would vomit violently, if he ate or drank anything.
These migraines would rear their nasty head, after indulging in sugary foods found at birthday parties or holiday events.
We quickly learned that Alex would need to take protein-packed lunch and snacks to school with him each day.
*Children who get migraine headaches need to follow a low-carb diet without sugar or added sugars. They need to eat often every few hours and avoid sugary beverages.*
Hildi was two years old when I first suspected that she had pediatric fibromyalgia. At two years old, she suddenly started walking on her toes and developed tight heel chords.
My next clue, that she may have pediatric fibromyalgia, was on a family car trip of 18 hours, when she was three years old.
As she sat in her car seat, she pointed to her left forearm and told me it hurt. (This is the first area of the body that children develop their fibromyalgia nodules per Dr. St. Amand.)
Because I had had prior fibromyalgia experience with myself, as a child, and my son, Alex, I knew more of what to look for in Hildi.
Hildi was diagnosed with pediatric fibromyalgia when she was four years old, by Dr. Melissa Congdon, in Mill Valley,CA.
(See photos right.)
She has also been seen and mapped by Dr. St. Amand in Marina del Rey, CA.www.fibromyalgiatreatment.com (See photos right.)
OVERLAPPING Symptoms of Reactive Hypoglycemia (HG) &
Fibromyalgia (See Hypoglycemia & Fibromyalgia Symptoms Overlapped)
For Hildi, now six, on her first birthday, I made a cake. It was vanilla Funfetti and the icing was made out of heavy whipping cream and about a half a tub of the store bought Betty Crocker frosting mixed with sugar free applesauce. (Super YUMMY!) This was for a double layered cake 9x13 inch pan.
When she ate her piece of cake, she immediately became almost comatosed—so fatigued that I thought I was going to have to bring her to the ER.
It was scary.
Before then, she has not had any sugars other than in the low carb fruits and veggies from Dr. St. Amand's HG diet. I had always made my own baby food and never introduced her to bananas, because both Alex and I can't tolerate them with our migraines.
That was my first sign that she was HG. Her cheeks would also flush after she ate sweets and they still do!
With Alex, now eleven, I first noticed he was HG at age two also. He would get wild when the grandmas would try to fee him ice cream at parties. Even a bite, would send him in a tail-spin. He would not listen, he would have fits of rage and noncompliance. (So unlike his mellow-sweet-natured self.)
©2023 Chantal K. Hoey-Sanders. All rights reserved.