6 months difference. Looking back and seeing how sick she was, and we didn’t even know, utterly breaks my heart. As a mom, how could I not see, how could I not know?
I posted these recent photos of Mary from our trip a few weekends ago. So many of us are SEEING how much healthier she is. And we are all so aware now of what she’s been going through, I know we are looking with a zoomed in lens that wants to see her looking and feeling healthy.
Getting here wasn’t easy, or cut and dry. So I wanted to tell the first few chapters of this story before I forget some of the life altering details, and before we enter more permanent chapters, and because there isn’t a lot of information on childhood Graves Disease.
Im so lucky and have 3 amazing kids, really. Mary however was always our one that needed a little extra of everything, attention, comfort, explanations, patience, and unfortunately doctor visits. As a baby she was born jaundice, had severe eczema, tonsils and adenoids out at 3 years old, hearing loss and tubes, and adenoids out again, nothing major or life altering.
Around October, a few months into 5th grade, everything changed.
At first it was major emotional breakdowns. Crying, sobbing for hours. After lots of talking we felt the root of these outbursts were caused by a few mean girls at school. They were telling her she’s ugly right to her face, picking on her appearance, alienating her from groups, all challenging parts of growing up and nothing we didn’t feel comfortable parenting her through. And what we thought were the cause of the emotional breakdowns.
Then everywhere we went and everything we did as a family, she wasn’t happy, found a way to make everyone miserable, to include a family trip to Disney, the happiest place on earth. If her little brother were taking a sip of a drink, she would slap the cup out of his hand, unexplained to us but in her rage justified herself in some way.
Next a major lack of personal hygiene, cleanliness, awareness of her apperance, and even care for her personal space (this didn’t help her issues with means girls at school). She mostly looked a mess and it was a full time job to keep her space from reflecting chaos. As a very orderly type family, this was hard for us, but nothing we couldn’t parent and love her through.
After a few bad decisions that were way out of her behavioral norm, we took her room away, cleaned and gutted it to the basic necessities, and were determined to help her recognize her choices and the actions of them. Any parent will tell you parenting a preteen is hard, and we were in the middle of that hard thinking, here we go. Fully prepared to teach her how to be a good human, self care responsibiites, difficulties of middle school, and tackle the challenges as lovingly and best we could.
December of 2018, still dealing with major emotional struggles, angry outbursts, no ability to cope or control actions, and no regard to disciplinary consequences, my husband and I did finally come to the reality that she was going through something we couldn’t help her with. We prayed, we talked, we hugged, we sat on the floor and cried, we gave patience, we made clear expectations for behavior, we dealt with the consequences, but as parents we were at a loss of what else to do.
So we decided our first step would be to meet with a counselor, someone to help her cope emotionally, help us as parents discern if our methods for correction were fair, and learn skills for moving forward as a young girl going through a difficult time (or so we thought).
After one session the counselor thought she certainly had some sort of attention defecit, on top of a deep desire to be accepted. We were hopeful meeting with him would benefit her, but before I was going to jump and medicate her, I knew I could correct a lot of her diet first, and for the most part the counseling really helped. Her struggles with being accepted at school seemed to get better, she learned skills and agreed that at the surface opnions of others didn’t really matter.
But, her not being herself, didn’t improve.
Sometime in early March I can remember one morning she was like a ZOMBIE in the kitchen, walking back and forth not really accomplishing any task, almost half asleep and drunk. She was getting harder and harder to wake up for school, she was angry and mean, and so distracted taking forever to accomplish one small task. She is a natural pleaser so for the most part she tried SO HARD to behave at school, but at this point her teachers were concerned with her ability to focus, and even said her hands would shake throughout the day.
Instead of thinking sickness we were concerned for her mental health.
Almost simultaneously her body was breaking out in hives as we were making emergency visits to mental health and psychiatrists, thinking she is so unstable, to the point we were concerned for her safety and mental health.
I can’t tell you how many times I was in tears on the phone with a therapist or my husband saying I just don’t know whats wrong with her. Halfway blaming that she’s just always been our difficult child and halfway worried she was literally going crazy.
The hives were somewhat of a mystery, she’d never been allergic to anything that I knew of, Id slowly eliminated common food allergies, gave her OTC allergy meds, but the occurrence became more frequent and even more random. I thought maybe we should see an allergist. I called and made her an appointment, it would be a month before they could get her in.
So a month later we went and saw the allergist, still dealing with all the symptoms, still seeing a counselor, still having good days mixed with really hard, heavy, bad days. Her body still trying to tell us something through hives.
The allergist took one look at her and said “have you noticed her goiter”, my heart dropped and my inhale froze. She lifted her neck and sure enough, as plain as day, there it was. He did the routine allergy testing, but also ordered blood work and lab panels to test thyroid levels.
In order to get the results of those, I had to make another appointment with her allergist, that took another few weeks. So back we went, to an allergist, to hear she has thyroidsim (clearly hyper based on how thin she’d gotten).
I was told the allergist would refer her to an endocronolgist and I’d receive a referal. So we were waiting again.
After a week of no word, I call my insurance who then tells me all referrals go through my primary care, so I needed to call my allergist and have him call her primary care to tell him to put in another referral. So again we waited.
FINALLY a referral in hand, I call the endocrinologist thats listed on my referral form from insurance, and Im told they cannot see her because she’s pediatric, wrong referral entered.
Through all this waiting I had recently glanced at a family photo of us and it HIT ME right then, like a gut punch, she is not the same kid..what happened gradually finally became a snap shot of reality that she was sick when I looked back at these family photos from just the year before (May of 2018 - March 2019).
Summer, 2018
March, 2019
Granted she’d gotten braces, new glasses and bangs (whoa thats a lot for a 10 year old), but more than that she just WAS NOT the same kid. A neighbor had mentioned if I’d noticed her eyes changing, and I hadn’t until I saw that photo.
My ability to wait for insurance and doctors was quickly coming to an end.
Another God thing, a client of mine told me her story, having Graves disease as a college student, how rare it was for her age, and to look it up.
So as any advocating mother would do, I got busy researching.
Mary’s symptoms were spot on Graves Disease. I’d never even heard of Graves, Thyroid Eye Disease, and had no clue what it was outside of knowing she was most likely dealing with hyperthyroidism (I usually hear about hypo from frustrated clients).
So here we are, struggling to help our daughter, enlisting the help of a counselor that stands by attention deficit (in his defense she did struggle to focus), teachers concerned about her emotions and maintaining she’s a good kid going thorugh a hard time (I think its normal to want nothing to be wrong with them), and an allergist that half way helped but dropped the ball on urgency on her part, and her PCP sending her to the wrong endocrinologist (which had she not had hives we might still be waiting).
TWO months later, 8 more weeks of knowing and yet living through sickness, after all of this we FINALLY get the right referral for a pediatric endocrinologist.
I can remember being at the gym with some Army wife friends of mine and the phone ringing. I usually don’t answer unidentified numbers, especially when Im at the gym, its my only hour for me. If you’re a caretaker, you know to answer the phone, I was quickly learning that and of course answered.
All in one day they received her blood panels, took one look at her charts, and someone CALLED ME FOR ONCE, and they INSISTING I bring her in NOW!!
Okay, after months of struggle, now we’ve gotten to the urgency, now we’ve got someone saying we have to help her, now we’ve got someone saying she is not well, at all.
So I figured out arrangements for my other two kiddos. Jumped in my car, checked her out of school and went to what would be our first of many endocrinology appointments.
Confirmed immediately, she has Graves Disease.
She’d been living like she was exercising ALL THE TIME, her resting rate was 130. For her last two weeks of fifth grade she was told no activity, no recess, no PE, nothing that could stress her heart or body any more. Obviously she was so fatigued it explained a lot of her irritability, weight loss, anger, and the appearance of poor health. At the time I had never heard of a thyroid storm, I can imagine her body was on the edge of having one.
I had been familiar with the symptoms of thyroidism, more specifically hypo as a personal trainer, but never thought to consider my 10, now 11 year old as someone that would have such severe thyroid issues.
Within a few days of medication she looked at me and said “mom I feel so alive, like Im just here and present, thank you so much for taking me to the doctor”.
Again, I lost my ability to inhale.
My poor sweet child, who I’d spanked, raised my voice at, took her room away, cried with, prayed with, and hugged on her floor at a loss of how to help her be a successful young adult, was fighting to function and I had no clue why.
And from now on, Graves Disease will always be a part of her story.
Part 2: Thyroid Eye Disease
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