our disastrous doctor visit

Let me preface this entry by saying we live in a rural area. The part of the country we live in is breathtakingly gorgeous, with a national park, prime fly-fishing areas, and snow-capped peaks eleven months of the year.

We are not known for top-notch medical care. That's not to say our area doesn't have some stellar physicians, from whom I personally and our son as well have received excellent care. But for anything life-threatening, people are usually put on the Flight for Life helicopter and flown to Denver or Springs.

I still felt that our pediatrician should have caught the connection between Chloe's eczema and her milk allergy, so I asked around if there was another pediatrician I could go to. Our daycare director mentioned there was a new pediatrician so I scheduled Chloe's one-month checkup with her. I felt bad, as though I was betraying our regular pediatrician, but I thought, Chloe's care has to come first.

When I met her, I wasn't sure what to think. As the visit progressed I felt as though I were being talked down to. Chloe isn't my first child, and we had been through many of the same issues before with Andrew, and compared to a lot of people around us, we were pretty decent parents.

I felt more and more uncomfortable. Finally this doc mentioned the words that gripped my heart with fear: "failure to thrive." Chloe weighed in, at 13 months, at just shy of sixteen pounds. I was terrified that there was something really wrong with her.

The doc prescribed that I smear peanut butter on everything she ate, and if she didn't improve after three weeks that she would run more tests. She also prescribed that I give her Pediasure, one bottle a day. I said that she was very likely allergic to milk because of the experience we had with the yogurt. I asked, what if she's allergic to peanuts?

The doc responded sharply, "We don't know that, do we?"

I felt like I was going to explode with panic. I couldn't stop getting those words out of my head, "failure to thrive." Was my baby girl, my precious, happy darling girl, in trouble?

I started crying, and the doc hugged me and said, "Has anyone told you this is your fault? Come on now."

What?!?!? My fault?!? It never crossed my mind to make it about me. I was worried about Chloe. The bitch.

I left the doctor's office and went to Walmart and got two jars of peanut butter and five cases of Pediasure. As we left the lobby I put some in a cup for Chloe, who drank a few tablespoons eagerly before she threw the bottle down.

By the time we got to the car (and we had parked in the front of the lot near the store) Chloe was crying, hoarse, breathing hard--clearly having an allergic reaction to the milk in the pediasure.

I strapped her in, revved the car and zoomed back to the doctor's office. I'm sure I cut somebody off. I was so mad I could hardly think. I wasn't sure if I was more mad at the doc, or at myself. A lot of things had just happened, at Chloe's expense, that shouldn't have happened, and I was as at fault as anyone.

When I got back to the office, the first person who saw me was our old pediatrician. She calmed me down and got a nurse to get Benadryl for Chloe. Once Chloe's reaction was under control and she had stopped crying, she explained again about the growth charts. I told her the other doc had said that Chloe might have failure to thrive. She responded by saying that doctors say certain things partially out of their experience.

I imagined that where this doctor was from, she might well have seen very many cases of failure to thrive because of poor nutrition caused by lack of proper food for the mothers, or illness caused by unclean water sources.

It took a while for that incident to work its way out of my system. It was several weeks before it was a good time to return the pediasure to WalMart. I cancelled the three-week follow-up visit I'd scheduled because it fell on a school day.

Later on, Daniel talked to one of his colleagues, who happens to be an M.D., and she said that the best thing for babies and children with regard to their doctor is someone who has seen them and been with them since their birth, and knows their history and the parents. Someone who jumps in in the middle doesn't see the whole story as well.

But the lessons I took to heart that day were the most valuable. 1) TRUST MY MOMMY INSTINCT. Chloe was developing fine, I knew in my heart, she was just tiny, and I let the doc take advantage of that fear. 2) Never give her anything to eat or drink that someone else tells me to just because they tell me to, even if that person is a doctor.

I try to look at the positive in this, as always, and I learned that with regard to Chloe and her allergies, my mommy instinct was probably the best safeguard for her. If I felt the need to check on her, I did. If I felt the need to say no, she can't have that, it was MY call and no one else's.

Let me repeat: Trust your Mommy Instinct.

weight gain

When Chloe was born she was a normal-sized infant, seven pounds, four ounces. She was adorable. Her birth was easy. Everything was completely normal.

She had lost a normal amount of weight at her first week well-baby checkup, as much as any baby loses in the first week of post-birth life when they're learning to nurse and clearing meconium out of their systems.

At three months, she was still on the growth chart. At six months, she was starting to drop off. At nine months, she finally doubled her birth weight. At one year, she was not quite seventeen pounds.

The growth-charts, as they are now, recommend that babies double their birth weight by six months and triple it by twelve months, so she should have been fourteen pounds at six months and twenty-one pounds at a year.

I worried excessively about these numbers. I never did with Andrew, our three-year old, because, well, he was always a chubby munchkin.

Our pediatrician kept reassuring me that breast-fed babies, as Chloe exclusively was for the first six or seven months, grow more slowly than formula fed babies. In fact, most formula fed babies that I'd seen seemed overly fat and chubby. Chloe didn't seem fat, but she wasn't scrawny.

In the back of my mind I kept getting more and more concerned, despite our doctor's reassurance. Tiny herself, our doctor would say, "but these charts are based on formula-fed babies and I'm not concerned at all, she's developing normally."

Of course she was, and I celebrated every little milestone--the rolling, the sitting, the pulling up.

But I couldn't shake the doubts in the back of my mind.

An aquaintaince suggested a vitamin D deficiency, which is often undiagnosed in infants because the only symptom may be slow weight gain. I thought about how she had gone straight from her dark bedroom to her dark caregiver's house all winter long.

My mother suggested that she was just taking after me, who weighed 23 pounds at age 2. I thought about how Chloe wasn't on track to make even that.

My husband said not to worry about it. He thought it had to do with her body not being able to process the dairy in the breast milk, and therefore not getting all the nutrients from it. I worried about how much nutrition she actually was getting.

The doubts and worries in the back of my mind grew to a disproportionate size, and it was preventing me from scheduling her 1-year checkup because I didn't want to know what she weighed. I was in denial.

I finally took her in at 13 months and scheduled her with a different doctor.

That visit was an utter disaster, and taught me a valuable lesson about following my mommy-instincts.

eggs

The next discovery was that Chloe had a possible egg allergy.

It wasn't too difficult to avoid giving her milk, because at nine months she was still nursing several times a day and we'd give her juice to drink. I honestly don't remember when we started giving her rice milk, which is now a staple beverage for her.

Anyway, we hosted a family reunion party at our house on June 22. My husband's three sisters and their families came, along with his mother and her husband.

My oldest sister in law made potato salad, and her recipe--quite delicious--calls for hard-boiled eggs and of course mayonnaise.

Chloe was a little fussy and in order to help me eat, she took Chloe on her lap, and gave her a baby carrot to gum (she had no teeth yet).

There must have been a smear of mayo on the carrot because after about ten minutes I noticed that Chloe's upper lip was blotchy and swollen. There were red circles that looked like hives.

I gave her some benadryl (which the doc also prescribed we have at hand always) and it cleared up within about twenty minutes.

I remember feeling a little concerned, but not too alarmed. It was a little bit of a mystery. Knowing that she had a definite milk allergy, this came as a possible, and we decided to just avoid egg for the time being. No scrambled eggs for Chloe!

Unfortunately, this meant all quick breads, pancakes, and things like that. By this time, we were giving Andrew scrambled eggs, banana bread, and pancakes, but we couldn't do that for Chloe.

It was a little bit of a difficult summer, with me not eating dairy (no ice cream on the swing in the front yard!) and trying to figure out things Chloe could eat to help her grow. She was getting a lot of pureed veggies, rice cereal, baby oat cereal, juice, and of course, breast milk.

Let me stop and say what a delight Chloe is to be around. I haven't said anything about her personality, but she is absolutely cheerful and sweet. She loves to be social and smiles all the time. She won't put up a fuss when it's time to go to bed. The only time she cries is when she's hungry.

With these allergy discoveries, we were fast eliminating good sources of protein for her, and that wasn't going to help her grow.

eczema

After we took Chloe to her follow-up appointment with her pediatrician, we had the epi-pen juniors and orders not to give her any more milk, of course. That was in May of 2008. Along with this discovery we found the cure for Chloe's skin condition.

Chloe had mild eczema on her head, chin, and occasionally inside her elbows and on her back. It wasn't bad enough to be alarming, but bad enough that it marred her pretty face. We have pictures from our Portland trip that show her with it on her chin. Up til then her doctor had just given us some ointment to put on it.

When we found out she had a milk allergy, I started doing some research, and discovered that babies with a milk allergy and who are breast-fed often have eczema if the mother consumes dairy. In fact, about forty percent of eczemas in breast-fed infants are due to an allergic reaction to the mother's dairy intake.

I was kind of dismayed, to say the least, that our pediatrician hadn't suggested that. It would have saved us that trip to the hospital (and a bunch of money). I found other mothers out there whose babies had had eczema so severe that it was literally disfiguring. Once they removed all dairy from their diets, the babies' eczema cleared up to the point that you couldn't tell the poor dear had ever had it.

It was a struggle getting dairy out of my diet. It took about six weeks. The first few weeks I just stopped having breakfast cereal, and cut back on eating cheese and ice cream. Chloe's eczema would come and go. I went to a conference with some colleagues and for dinner one night they bought us pizza, which I ate, and then we went for dinner the next night and I had pasta in a cream sauce.

Chloe's eczema wasn't going away, and I could really tell that after those two meals it got worse. I got serious. I eliminated every single trace of dairy from my diet and after almost a month Chloe's skin condition was completely gone. If any of you have had to do that, or have chosen to cut out dairy, you know that it is very difficult, because dairy is in everything, and the last tidbit to go was that couple of tablespoons of milk in my coffee in the mornings.

To this day I'm still a little annoyed that our pediatrician didn't suggest the connection. In fact, I really am having trouble letting that go. It seems so obvious to me. If fully forty percent of infant eczemas are due to an allergy to the dairy they are getting through their mother's breast milk...isn't it worth it to suggest it, rather than simply prescribe an ointment?

It was absolutely lovely, though, to see Chloe with clear skin.

the beginning

I was trying to think of healthy foods to feed my eight-month-old, Chloe, and my sister suggested whole milk yogurt.

In no way do I blame her for what happened next: Chloe ended up in the emergency room with an anaphylactic reaction to the milk. Her oxygen was low and she was itchy, red, hoarse, and crying.

They gave her benadryl and steroids, and prescribed an epi-pen to carry with us everywhere.

When we got home I knew that her reality had changed for the foreseeable future, and mine and our whole family's along with it.

We have a three-year-old son and a fifteen-year-old nephew living with us. We all like to eat, and we aside from carefully introducing foods to Andrew, our son, we never really thought about food.

Now we have to think about it all the time. Or at least, as the primary chef, and chief organizer of the family, I do.

The hardest part about it is feeling like we have to reinvent the wheel all over again. We're on the learning curve, no one else is, so it's all up to us.

Sometimes the responsibility of keeping her alive and growing is overwhelming. It often feels like the juggernaut of the food production industry is totally against us.

This blog will hopefully address all the issues we, and other families coming to terms with a child's severe food allergies, often have to deal with.

In addition to being severely allergic to cow's milk, Chloe is also allergic to eggs, wheat, peanut, dog, and cat. We haven't tested her for tree nuts but it often goes along with a peanut allergy. And speak nothing of fish and shellfish--we won't test for those until farther along the road, or even introduce them.

I have my up days and my down days. Like most parents, we love our daughter so much and would do anything for her, so when people say, oh, it must be so hard!, we just smile and say, she's our daughter.