Daley Ponderings

(this was written January 2024, referring to Grace's first two years of life)

When Grace was about six weeks old, right at the beginning of December 2021, I noticed that she had “café au lait spots.” I looked it up on the internet, and discovered that these spots are considered perfectly normal if there are fewer than six, but if there are more than six you should contact your doctor because it could be an indicator of something called neurofibromatosis.

I tried not to think too much about that at first. At about the same time, however, she started showing some blood in her stools. So I contacted our midwife, and she said, “Oh, that really looks like allergic colitis; you should come off dairy.” We were exclusively breastfeeding, so I eliminated milk from my diet, but it did not seem to help. At the time, I didn’t understand the difference between lactose intolerance and a milk protein allergy, so I didn't go off of all dairy; for example, I was still eating butter.

At some point before four months old, I had noticed that Grace’s lymph nodes were swollen, though at the time I didn’t know they were lymph nodes; I only knew that she had swellings around the back of her neck.

At Grace’s four-month doctor’s appointment, we were referred to a gastroenterologist for the bloody stool issue. When I mentioned the café au lait spots, the nurse practitioner said that she couldn’t have neurofibromatosis because if she did she would have a lot of obvious bruising. Neither was she concerned about the swollen lymph nodes. She mocked me for looking up stuff on the internet, and really didn't like the fact that we were not giving Grace any vaccinations. We are not generally against vaccines, but our reasoning was if she has unknown, multiple allergies—or something worse, like an autoimmune disease—we shouldn’t be stressing her system before knowing the true situation. I left that appointment as soon as I could and hoped never to see that lady again. It took me several months to get over the trauma and move forward, switching all the children to a different practitioner.

But back to April. We made an appointment with the gastroenterologist, and he was impressed with how healthy Grace was. He said, “That looks like classic allergic colitis; go off dairy; she should outgrow the problem at the age of a year or so.” He then explained what you need to do in the case of a milk protein allergy: eliminate all milk protein everywhere, which includes many things you’d never think of. Did you know that “natural flavors” on an ingredient label can hide milk proteins?

We also saw an allergist, who tested for a few things, but they all came back negative. Both the allergist and the gastroenterologist said that gastrointestinal allergies are not the same as the kind that provoke an anaphylactic reaction, so the testing doesn't really tell us anything useful. I had some online conversations with the gastroenterologist over the course of the summer as eliminating milk protein didn't solve the bloody stools problem. It did help with her eczema, and it did reduce the bloody stools some, but there was still something else going on.

So we tried going off beef and all other cow products; we tried going off soy protein; we tried eliminating many other things, but there was still sometimes blood in the stool.

At her first birthday, we tried giving dairy again, because the gastroenterologist thought she should have outgrown a milk protein allergy—most kids do. But that was a fail. Also, it seemed like peanuts triggered a more severe bleed, so we took peanuts out of my diet—and hers, as she was now eating regular food as well as nursing.

I had also noticed that it took Grace a long time to get over a cold. Whenever a normal cold would go through the family, it would take her three weeks to get over it. I mentioned this to the gastroenterologist on the online portal, and was told, “It's common for kids to get lots of colds; she'll be fine.” So at that point we continued to try to narrow down her problem foods, and waited for her to grow out of the condition.

At her next regular check-up, I brought up all Grace’s random symptoms that by themselves did not cause the doctors’ concern. It just seemed to me that, when put all together, it might indicate that something more serious was wrong, like an autoimmune problem.

We were then referred to a rheumatologist, but stalled at the point of getting an appointment, as the only pediatric rheumatologist in the state was not taking new patients. And the next two closest general rheumatologists were also not taking new patients.

So the next stop was an otolaryngologist (ENT), because Grace’s breathing was loud and her tonsils were very swollen. She was a great snorer and would have apnea-like episodes. The ENT said, “Those tonsils are huge; you know it's affecting her breathing. We should get those out.” An x-ray confirmed that her adenoids were also really swollen. I expressed my concern that this might be an autoimmune problem, and said that I hesitated to treat the symptom and miss the underlying cause. But he said those were “very rare.” I thought, “Well, what if she’s one of those rare kids?”

I was fed up with regular doctors at that point, and decided to see someone who is both an MD and a naturopath, and had been very helpful to a friend of ours. She ordered some blood tests, and when the results came in, she said, “Oh yes, her white blood cells are high (WBC); this is concerning. Her iron and some other measures are a bit low as well. She’s clearly fighting something. Let's put her on some anti-microbials and some immune-boosting nutrients and see if that helps.” She did some other allergy testing, which we knew was controversial—the medical community basically says it's no good, and the natural community is divided on its efficacy. That testing suggested still more dietary restrictions, so we decided to try both those and the supplements for a month. The doctor also offered to do stool testing to check for parasites, but we thought to try the diet first.

When her WBC came back high, leukemia came to mind, and we tried to assuage our fears. When Jon mentioned that growth would be hindered, I pointed out that she hadn’t been growing very much in the last year or so. I finally looked up her weight and height and discovered that she was in the 1^st percentile for height and 7^th for weight. This is so much smaller than our other babies, and though we didn’t have much data for her because of missing well child visits, it did seem like there had been a growth slow down at some point.

Soon after starting the restricted diet, I found out that I was pregnant. Grace seemed to react to my prenatal and iron supplements, so I decided to go ahead and wean her so that I could eat anything and thus take care of the baby's nutrients. I made a two-week goal so that it would be quick but not too quick. That was successful, though quite the emotional energy drain.

Repeat blood tests a month after the first showed Grace’s WBC improved (down by about half) but still high; other results were about the same or slightly improved. The naturopathic doctor said she wanted a hematological-oncologist to check out the blood-count numbers. In the middle of dealing with insurance to find one, Jon spoke to a pediatrician online who suggested we go back to the gastroenterologist. So we did. Because she was still having blood in her stools, he scheduled an endoscopy and a sigmoidoscopy and took a stool sample. When her stool sample came back with very high proteins, he changed the sigmoidoscopy to a full colonoscopy.

Colonoscopy prep is no fun even if you understand what’s going on, so that was a hard time, but she did better than I expected. The doctor said that the upper GI tract looked normal, but her colon was full of swollen lymph nodes. Did you know there are lymph nodes in the colon? We saw the images—it looked like a ball pit with tiny pink balls. He also took some biopsies and said the pathology results should be back in a week.

In the meantime, he and the anesthesiologist strongly urged us to get Grace’s tonsils out as soon as possible. She gave the anesthesiologist some scares when her swollen tonsils stopped her breathing a few times during the colonoscopy, we assume similar to what happened when she is sleeping. They scheduled the tonsillectomy for the Monday after the colonoscopy follow-up. (Then it got rescheduled for Wednesday.)

Grace had some bleeding and some black stools a little less than a week after the colonoscopy. Jon noticed a hard place in her belly, and that she was looking pale, so the doctor changed the planned video follow-up to an in-person visit.

Wednesday, November 29th, 2023, the day of that follow-up appointment, was the day our lives were upended.  (click next below to continue reading)