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Our Journey

Diagnosis

I can’t really imagine a more dramatic way to uncover Max’s allergies. He was just a little past six months old. I had been nursing him exclusively, but we had recently added oatmeal as a snack before bed. I had read that formula-fed babies slept better at night, and I will freely admit that I was more than ready for longer stretches of zzzs at that point. I also will admit that I felt pretty good about having nursed him exclusively as long as I had. I was feeling a twinge of guilt about breaking our streak. It had been a bumpy road in the beginning and the lactation consultants at the support group I had joined had drilled the “breast is best” message pretty far into my psyche. Even that hadn’t prepared me for his reaction when he had those first few bites of oatmeal mixed with cow’s-milk-based formula: First he turned red, then the hives started and began spreading, then the wheezing and finally he turned bluish. It was pretty much textbook anaphylactic shock, although we didn’t realize that in the moment.
That reaction and its aftermath triggered a series of tests, skin and blood. The doctors determined that he was severely allergic to dairy, eggs and peanuts/tree nuts, moderately allergic to soy and perhaps mildly allergic to wheat. Keep in mind he hadn’t directly eaten any of those except the small amount of formula, but the explanation the doctors offered us was that sometimes babies tolerate allergens in their mothers’ milk that they don’t otherwise.

Looking back on his early months we had what should have been several red flags. For one, Max was always hungry. He was ready to eat just a few minutes after finishing. We joked about Hobbits who eat first breakfast followed by second breakfast, but Max also wanted a snack in between. It turns out that is pretty typical of infants with undiagnosed allergies. Their mothers’ milk coats their tummies, which makes their tummies feel better, but at the same time it triggers the immune reaction that makes them feel unwell again. Babies with food allergies also are notorious spitter uppers. Max was no exception. Of course some babies with no allergies are also notorious spitter uppers. Max was growing quite well and little smarty that he has always been was not only meeting his milestones but meeting them consistently ahead of schedule.

Still we had concerns, which we diligently kept bringing to the pediatrician. There was the constant green tint to his poop and the way his respiration rates skyrocketed while he was nursing. The pediatrician as I remember it always listened to us but always ultimately pointed to the healthy-looking, milestone-meeting babe in front of her as reason not to be too concerned. To be fair, I am sure we gave off a nervous new parent vibe a) because we were, b) because we had scheduled a preview meeting with her weeks before Max was born where we had brought in a list of 30+ questions and stayed in her office grilling her for almost an hour and c) because I kept offering to bring her a sample of the green poop which she kept saying was unnecessary. She gushed over Max’s accomplishments and assured us spit up was more of a laundry problem than a medical issue and that green poop might mean he wasn’t getting enough of the richer hind milk and to go longer between feedings or see the lactation consultants again and tell them that his respiration was fine while we were at it (as they were concerned with me on that one and had sent us to her office twice to check on that.)
Once we had the food allergy diagnosis, I went about the process of eliminating those allergens from my diet. Happily we saw instant improvement: longer stretches of sleep, less spit up, a happier baby even though we hadn’t realized how unhappy he’d been before. We’d seen or more accurately heard plenty of fussing babies in our child-free days and who knew they weren’t supposed to do that crying/fussing all the time?

Just as we were getting into a groove, as Max was turning nine months old, we discovered we were pregnant with Claire. The sensible thing would have been to turn to formula for Max, but I suspected finding a hypoallergenic formula was going to be a tough transition. I hated to give up all the progress and sleep we had recently achieved. I harangued the lactation consultants to give me the name of an obstetrician who would support or at least tolerate continued nursing while pregnant. They all warned me the taste of my milk would probably change and said Max likely would wean at some point, almost certainly by the third trimester, but they didn’t know how devoted my little nursling was. I nursed and stuck to his diet restrictions the entire pregnancy and then tandem nursed both kids for all of Claire’s first year. It was much, much longer than I planned to nurse. Not to be a martyr about it (I will save that card for Max’s teen years), but I was never the kind of mom who liked to nurse. After nursing an infant and a toddler, I sometimes felt completely “touched out” (meaning I just craved some personal space), but I felt like we had few better options.

We all wondered how those unique diet restrictions would affect Claire. As it turns out, Claire has no food allergies, but she does have alopecia areata, an autoimmune disorder in which her body attacks her hair. She was completely bald at age 4 and has since then continued to have a couple of noticeably patchy bald spots. Scientists don’t fully understand what causes alopecia but a family history of allergies is slightly more common in those diagnosed with it. Some dermatologists believe stress such as that which comes with living with a brother who has several serious medical conditions can play a role in alopecia’s emergence and progression, although her dermatologist does not believe stress to be the cause with her. Still, as it turns out the food allergy was not to be Max’s only diagnosis.

Not all

At the appointment after Max’s first febrile seizure (he was 15 months), the pediatrician observed “If it weren’t for bad luck, Max wouldn’t have any luck at all.” She was just referring to the seizure following the food allergy diagnosis, but as it turns out neither she nor we knew the half of it. The febrile seizures, which are scary to watch but relatively harmless, continued with almost every virus for a couple of years until he just seemed to outgrow them, although he still gets high fever spikes from time to time.

When he was 3, he failed a vision screening and after a referral to an ophthalmologist we found he and Claire both had inherited Jason’s amblyopia. That started them both with years of glasses and of patching one eye for hours a week. The idea of the patching was to trick the brain and improve the vision in the genetically weaker eye. It thankfully seemed to be a remarkably effective, amazingly low-tech solution to a complex problem.

The real unlucky break though came in 2006 just after Max’s fourth birthday. He had what ended up being a rare complication from an ear infection called a dural venous sinus thrombosis. This lead to raised intracranial pressure and terrible headaches, annoying tinnitus (or that “whoosing” sound as Max’s 4-year old-self described it) and because of optic nerve swelling double vision (or “two tvs”) sixth nerve palsy and an immediate threat to his vision. We were living in a small town north of Memphis at the time, and the neurosurgeons at the closest children’s hospital, LeBonheur in Memphis, tried to control the raised pressure with a combination of medication and lumbar punctures. Max was in and out of the hospital (including Christmastime 2006) for a couple of months until finally his now rather impressive team of doctors decided the threat to his vision was too great and they had no choice but to put in a shunt to drain the cerebral spinal fluid from his head to his stomach cavity.

Shunts are great when they work, but they come with their own set of complications. For one thing, they are needed for life as most patients become shunt dependent. For another, they break. A lot. Often with no warning and for no obvious reason. It’s not uncommon for kids with shunts to have multiple (5, 6, 7 and more) neurosurgeries to manage their shunts. There is also always the risk of infection, which because of where the shunt is, is meningitis. Because the shunt drains the fluid, the infection can quickly become sepsis. All this makes shunts rather high maintenance and high risk (not to mention kind of high stress). It doesn’t help that the symptoms of shunt failure, headache and nausea, are also the first symptoms of a lot of childhood illnesses. Since acting quickly can greatly improve the outcome, specialists always emphasize how important it is to get any unexplained symptoms evaluated quickly.

It also doesn’t help matters that shortly after having the shunt placed Max developed the symptoms of migraine headaches. Jason gets occasional migraines, so it’s not surprising that Max would also as they tend to run in families, but one of Max’s main symptoms is light sensitivity, which is one of the hallmarks of meningitis. All of sudden diagnosing him became much more difficult. This is in part explains how Max has a favorite and least favorite exam room in the local children’s hospital emergency room and how Jason and I know where the best vending machines are and how Claire knows the slightly out-of-the-way location of the ice cream chest is in the hospital cafeteria.
Also after his shunt surgery, Max started developing signs of asthma. Every virus was ending in wheezing and oral steroids and breathing treatments, something that is not uncommon in kids with food allergies but which was obviously particularly unwelcome at our house while we were still adjusting to managing his new shunt. He also perhaps not unrelatedly developed a number of seasonal allergies. “He’s allergic to pretty much every blooming thing,” our allergist punned (cough badly uncough) after one skin test which just confirmed what we had already observed: namely, that all the pollen and grass and mold outside were exacerbating his breathing issues. A year after his shunt surgery he was back in the hospital with pneumonia, an incident which involved a harrowing ambulance ride from our small town in Tennessee to Memphis in the middle of an ice storm.

A couple of years later in the second month of first grade he needed his first shunt revision (this time in Arkansas where we had since moved) and had by the second semester of the school year had a severe case of the flu, strep throat and another case of pneumonia. Second and third grade went relatively well though. While his asthma still seems to flare a couple of times a year, the daily asthma and mild daily migraine medicine seem to be working most of the time, and for the most part he’s gone back to just being a kid, albeit one who has his own small pharmacy in our kitchen cabinet.

Over the years, Max also has outgrown a lot of his original food allergies. His allergist retests him every year. He dropped soy (at age 2 1/2) and peanut/tree nut (at age 5) and shrimp (at age 6). Dropping peanuts and seafood was significant because traditionally those are allergies which few kids outgrow. Most recently he outgrew egg, which was a huge cause for celebration at our house, although it took several months of slowly increasing how much he ate before his digestive system could tolerate it. Milk/dairy is stubborn though. He still tests off the charts for that one. We had to use the epipens for the first time last summer after he ate a Burger King burger which must have had some trace amount of cheese residue on it. At first, we thought we would get away with giving him just benadryl, but a short time later he was turning red, he said his tongue felt funny and his chest hurt. We had a moment where we wondered if the epi and the benadryl were going to work, but then remarkably he turned a corner. By the time we arrived at the hospital, he was back to his chatty self asking all kinds of questions about how epis work and wondering if he would get assigned to his favorite room. Not to keep picking on his first pediatrician, but in that moment Jason and I were sure she was wrong and Max and we were quite lucky indeed!

12 responses »

  1. That is quite a journey! Thank you for sharing it! It could not have been easy for you to experience it all let alone write about it…I know I have written a few myself. Our kids grow up very fast when faced with life threatening conditions…your son and daughter are very lucky to have such loving parents to guide them through even if it is blindly…again, I know. There is no guide book to parenting that covers the unique situations that you and I have experienced as have many others. Susan H. @ the food allergy chronicles

    Reply
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  11. I just found your blog and started reading your Journey to start with. We had a lot of issues with pediatricians taking us seriously about my son’s allergies as well. He was a freak case though, he nursed just fine until 6 months. No spit up, no green diapers, no hallmark signs of food allergies at all. At 6 months he switched to a cow’s milk formula which he drank until 1 year. Again with no problems. It wasn’t until we added cheese and yogurt to his diet that his food allergies reared their ugly head. He would break out in hives and vomit anytime he had cheese or yogurt. I talked to the pediatrician who told me it wasn’t possible that he had a dairy allergy because he drank formula without reactions. I don’t know why, I don’t know how he did it. I still wonder what flipped that switch in him. But he’s 5.5 now and is anaphylactic to dairy. He’s had multiple ER visits for severe reactions from accidental ingestion. He’s also allergic to eggs, peanuts, and tree nuts. The allergist is hopeful he’ll outgrow tree nuts by our next visit. His RAST comes back negative or extremely low for them but he still reacts at skin testing. His dairy and egg have dropped over the last 2 years but he is still a Class 5 for both. We continue to pray that each year will show more drops and that someday he’ll be food allergy free.

    I’m looking forward to reading the rest of your blog!

    Reply
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