I keep telling myself, “at least it’s not cancer”, “at least she’s not waiting on a heart transplant”, “Thank God she doesn’t have cerebral palsy”. There are lots of worse things than what we are going through and I know that. But my nine-year-old has some autoimmune stuff happening, some of which we’ve known about for a while, and some of which is new.
A little history: she’s been in a diabetes study since she was born. She has the gene for Type 1 (as I’m sure I do as my grandpa and uncle both had/have diabetes Type 1). The day after I gave birth to C., when we were still in the hospital, a guy named Michael showed up in our room and asked if he could test her for the gene. There was a big international study called TEDDY (The Environmental Determinants for Diabetes in the Young), he told us. I hesitated, but J. thought we should do it. Knowledge is power and all that.
What followed has been almost a decade of poop samples, twice yearly blood draws, toenail clippings, diet records, water samples, questionnaires and in-person appointments here in Seattle. We are trying to help science figure out why some people with the Type 1 gene go on to develop diabetes and why some don’t. In return, we get a letter every six months that gives me a heart attack each time I see the envelope. So far, it has always told us that C.’s blood test was negative for diabetes antibodies. I often wonder how I’ll feel if the letter someday says otherwise.
When C. was 4, someone from the study called to tell me that she’d tested positive for Celiac disease. They test for Celiac because it is somehow related to diabetes. I don’t totally get the correlation, but there is one. I was stunned (though also a little relieved because I thought I’d gotten a call to say C. was developing diabetes).
My son, her brother, already has severe food allergies (though, of course, none of them are to wheat). So, when we got the celiac call I thought, okay, I’ve got this. I can do food avoidance. We can adjust.
We had her scoped, and her scope was completely clean. No gluten damage at all. Our GI doc at Seattle Children’s Hospital told us she could keep eating wheat. For the next four years, I fed her macaroni and cheese, chicken nuggets, graham crackers, all the usual gross-but-demanded kid foods.
One night, the summer she was 8 (2013), she had horrible abdominal pain. She writhed in discomfort and couldn’t sleep. Around midnight, I decided to take her to the ER. I was afraid she had appendicitis and we weren’t sleeping anyway. What they found after doing an x-ray was a whole lot of constipation. We were instructed to give her Miralax and sent on our way.
Around that time, she was wearing her hair almost exclusively in a ponytail and I started noticing a large lump around the base of her throat. I knew right away it was a goiter, even though goiters sound like something old men in assisted living facilities get. Not something a little girl would have.
After a quick Google search, I satisfied myself that a kid’s goiter didn’t mean anything. That it would likely go away on its own.
That fall, C. had her 8-and-a-half-year Teddy appointment. Our clinician, who I love, thought we needed to make some changes to C.’s diet so she wouldn’t be so constipated or have so many stomach aches. They convinced us it was time for C. to go gluten free.
We went full bore GF. I made an appointment with a different pediatric GI doc at another hospital who did some blood work and confirmed the celiac diagnosis.
That particular doctor also got us in to see an endocrinologist about C.’s goiter. Very quickly, he did a blood test and ultrasound and diagnosed her with Hashimoto’s thyroiditis, a hypo-thyroid condition that often goes hand-in-hand with Celiac.
Fortunately, or unfortunately, though C. has antibodies attacking her thyroid, her thyroid levels are normal, so doctors won’t treat her. Probably don’t know how to treat her.
But she is sick. Despite being gluten free for more than a year (and, yes, I am very careful about hidden gluten and cross-contamination), she is nauseated every day. Stomach acid floods her esophagus and throat. She is starting to miss an alarming amount of school.
We have been to a naturopath since last February who has prescribed lots of supplements and tests, none of which have conclusively helped or diagnosed anything beyond a Vitamin D deficiency, which I’m treating. For the past two months, C. has been going to a Chinese acupuncturist/herbalist. Yet, nothing. It’s not helping.
in December, we decided to do one more endoscopy to rule out ulcers or anything more ominous. It was clean. Clean and pink as a nine-year-old’s digestive tract should be. We could even see villi. The GI doc gave the go ahead for C. to eat dairy, which we’d been avoiding in the hopes of helping her nausea.
She doesn’t want to eat the dairy, her digestive tract is beautiful, she ingests no gluten, her TSH levels are normal, but she still feels like shit. And I don’t know how to help her. Lately I’ve been reading up on low stomach acid and the symptoms fit her perfectly. We are trying some more supplements, apple cider vinegar, raw honey.
Her most recent GI doctor diagnosed her with autonomic dysfunction, which matches up with her symptoms to an extent, though she doesn’t have much of the dizziness, rapid heartbeat, etc. associated with that particular malady. And, as the doctor says, there is no real treatment for AD. He recommended peppermint, ginger, and mindfulness. We’re trying all that. With no results.
Since I titled this post ‘taking care of a kid with a chronic illness’, I need to tell you what it’s like. It is emotional and heartbreaking. I know C. has had a lot of good moments in the past year-and-a-half, but I also feel like she’s lost so much time to feeling sick. I’ve given her permission to tell me whenever she feels yucky, if it helps even a little to vent. Consequently, she tells me she is queasy about 100 times a day. Every time she announces this I want to cry. She looks at me with her round eyes, miserable, and imploring for help, but I don’t know what to do. I don’t know what else to fucking do.
It seems like, and C. says, that things are getting worse rather than better. She used to have more reprieves at least in the middle of the day, but now she is sick the whole way through. I feel lost and hopeless sometimes, but can’t tell her that. I act positive and convince her that we will figure this out and she will feel good again some day. Hopefully soon. But I don’t know if I believe it. I want to because I can’t accept that, even with the celiac, Hashimoto’s, and possible autonomic dysfunction, that she has to live the rest of her childhood or life feeling crappy.
So, we keep trying things. She keeps telling me she’s “queasy”, that her throat hurts from the acid, that she feels like she is going to throw up, that she doesn’t want to go on sleepovers and playdates because of her nausea. And after she falls asleep (late, always so late) I drink and cry and do more Googling to try to figure out what the hell is wrong with my baby.
I’m sorry if this is poorly written. I need to hit Publish. To get this out there.