Having gone back in time to describe setting up our garden, I’ll do another post on the immune disorder our youngest three have. Any talk of our family includes references to this, but I’ll explain it here so that I can leave a link out.
There isn’t really a name for what they have. As our immunologist says, “if you went to a big research hospital, someone would follow up and do genetic studies and they’d find the gene that mutated”. So we perk along with a disorder without a name. They have a hyper-IgE syndrome, but not the Hyper IgE Syndrome, aka Job’s Syndrome.
When someone has a big-time allergic reaction, say to a bee sting where their airway is closing, or one of those peanut reactions that land the poor person in the ICU, that is a “classic” allergy reaction, or an IgE-mediated allergic reaction. I say this because in our culture the word “allergy” has varying definitions, but here when I say “allergy” I mean an allergic reaction that is IgE mediated. Our three youngest have extremely high IgE’s, and in their youngest years their immune systems recognize ALL foods as allergens, and many environmental entities as well.
Araminta and Lucinda ate as toddlers. They had terrible eczema, by which I mean that over 80% of their bodies were covered with scales and open sores, and their faces often looked like they’d been through a meat grinder. I kept asking the dermatologists about food allergies, but was repeatedly told that eczema was not connected with food allergies. We were religious about using every prescription they gave us to treat their skin; tried everything we were told. We also tried everything “natural” we were told, as well. And believe me, everyone has a folk remedy that is certain to fix the eczema.
In 2004, they were finally referred to immunology “just to see” if they could be allergic to anything. This is when it was discovered that their IgE levels were just outrageously high. Other blood tests were done. They were sent to Children’s Hospital in Seattle to have a team evaluate them there. Partly this was to rule out Job’s Syndrome, and it is pretty certain, unless things change, that they do not have Job’s. But the team at Children’s said, in essence, “We don’t really know what this is. Because they are so unique, we are willing to follow them here, but without a precedent, we’re just guessing how to treat them, like your immunologist will be.”
Among their other labs, immunocap RASTs were drawn for the top 7 food allergens, and for both girls, all 7 came back 100%, or as high as they could test for allergic reactions. So overnight we removed milk, soy, wheat, egg, peanut, tree nuts, and seafood, plus they’d tested corn so that was removed, too. It was intense – hard to find food without all of those ingredients. I remember going to the grocery and getting more and more desperate just to find something for the next few days to cook. Chicken? Contained corn. Turkey? Ditto – the whole turkey was injected with either a soy or corn liquid. I finally broke down and cried in the tuna aisle when I couldn’t find tuna without an allergen. At least we had rice. Until a couple of weeks later, when they were actually getting worse and we tested another batch of foods and lost 10 more, including rice, potato, chicken, turkey, beef, and pork, plus several fruits and vegetables. We were told to try to find “exotics” that their little systems had never met. So we were feeding them taro root and pomegranate and buffalo and looking for someone who had deer in their freezer . . . which is when things really got bad.
It was at that point that they would develop new allergies as they tried new foods, just immediately. I remember little Lucinda sitting on the kitchen floor with a bowl of yam “fries” saying, “mmmmmm, mmmmmm” but as she ate them, she got open, weeping sores starting at her forehead and working down. It was so horrible and strange to watch. Araminta’s throat started closing up to lentils, although now I know of course that that isn’t something I should’ve tried. But at the time I was just racing, racing, racing to think of the next meal.
It was decided that there was no other option but to take them off of food altogether, so in November 2004 they went off of all food and just took in “EO28” which is a liquid that is flavored, created in a lab somewhere, that comes in a box that’s supposed to look like a juice box. At the time it only came in one flavor; now they have three. They took in nothing but EO28 for two years, with the rare treat of ice chips. Because their caloric intake was a concern, they weren’t even allowed much water for fear it would impact their appetite. So for two years, they only had that one flavor. Can you imagine? And they’d known food. Hardest for the rest of us was holidays. Christmas was only a month after this. Stockings, cookies, the holiday meal . . . we’d not realized how food-oriented it all was.
Thankfully, after two years of this, and one of those years also spent on oral steroids, their levels were slowly decreasing and they started being trialed and getting foods one by one. They still have extraordinarily limited diets. Araminta has more foods than Lucinda, who still “flunks” most of her food trials. If we eat anywhere, we bring food for them, as cross-contamination is a real issue. A month or so ago, Clara was cooking with an alternative flour (either teff or garbanzo bean flour, likely the latter) and Araminta walked into the kitchen and had a reaction from airborne flour. Her eye swelled so that the white of one eye was so swollen she couldn’t close the eye. We gave appropriate meds and took her to the ER, but airborne yikes.
When I became pregnant with Tarquin, we knew that he was at high risk for this, as well, so I did all I could in pregnancy. Removed any allergen from my diet that had the most remote possibility in the research for helping delay onset of allergies, etc. When he was born, they did allow me a trial of nursing him (and I remained on a strict avoidance diet), but by 4 1/2 months, the eczema was starting and bloodwork showed his IgE already far too high. Sadly, I weaned him by his 6 month “birthday” and he went on the infant version of what the girls had been on, called Neocate. He has remained on that until today. About a month ago, they retested him, and his food RASTs are still all off the charts. The plan, though, has always been to not introduce him to food until he is 5 years old, as that’s a common time for an immunological shift. So we’ll retest next summer. In the meantime, he’s a four-year-old that drinks a bottle. Fortunately he doesn’t notice the disapproving glares he gets when he needs some food in public. We’ve tried to switch him to the EO28 but he won’t touch the stuff.
They all three have asthma as a result of the hyper IgE, but it is relatively mild. We did an allergy-remodel a few years back where we ripped up almost all of the home’s carpet, installed a whole house filter, got another filter for their room, etc. They get allergy shots for their environmentals.
For awhile in the beginning, their immunologist would present the girls’ case here and there, hoping to find another doctor with a similar patient and perhaps some guidance on what worked and what didn’t. But she never met anyone, although oddly she had another little girl a couple of years after ours that had a similar story. Once in awhile someone who knows us will phone and say, “there was a little boy on ‘CBS This Morning’ like your children; he doesn’t eat anything!” So far, though, when I look it up online the “poor boy who doesn’t eat anything” does end up being on a similar product to Neocate and also has some foods.
So that’s what our little guys have.