Saturday, January 31, 2009

Nursery/ daycare and allergy ignorance

I was fortunate not to have to put my baby in daycare. I quit my job after he was born and a few months later starting working part-time with my husband and was able to take the baby with me. So I didn't have to fight with a daycare center about his diet. I'm thankful for that because it was hard enough dealing with the nursery on Sunday at church. For about a year I was even afraid to let them have him for an hour. He was a good baby, so I took him in to services with me. I was so paranoid that I didn't even let his grandmother keep him at her house until he was several months old.

Once Dal started to walk, he was a little too squirmy to hold in my lap for an hour during a church service, so I finally decided to give the nursery a chance. They had great safety and security procedures, it seemed. I was asked to complete an information sheet that would be keep in a notebook in the room he was to be in. They would give me a pager so they could contact me if there were any concerns. I talked to the lady who was in charge of the nursery for that year. She agreed that they would be very careful and not feed him anything that I did not provide for him. Everything was fine. I was shoulder-patted and reassured.

After he was officially diagnosed with dairy, egg, and peanut allergies; I informed the nursery volunteers and our church's Minister to Children. They were attentive and concerned and promised that peanut products especially would be kept out of Dal's presence. I was told that on Sunday morning, the little ones were only given soda crackers and water if they wanted a little snack. I was happy that they were so caring and open to protecting my son.

A couple of weeks later though, there was trouble. We picked Dal up from the nursery and he looked a little red in the face. Later he broke out with little hives and spit up some. The next day he had eczema. At that time, we were quickly learning that he was very sensitive to his allergens and would break out with even a tiny amount of exposure. I guessed that he was getting some sort of incidental exposure to something in the nursery; probably from another child or from something in another child's diaper bag. I spoke to the nursery people about it and they assured me they would be more careful. But we continued to have problems and then one day, Dal vomited several times after church.

To make a long post shorter, we finally figured out that a volunteer in the room was bringing and giving the kids goldfish crackers. And even though this person had been told about Dal's food allergies, the volunteer somehow didn't realize that goldfish crackers meant dairy product!
So this is when I learned that I needed to get together a list of dairy ingredients and give all caregivers a short lesson on what dairy, egg and peanut products were. At first I made a list with no-no ingredients in each category and had it laminated. Later, I ordered cards from the Food Allergy and Anaphylaxis Network (FAAN). I had a set of three little yellow cards: one with dairy ingredients listed, one with egg, and one with peanut.

You know, it is surprising how many people don't know what dairy or egg is in. I can understand that they may not realize some candies have egg; like the Wonka candy version of Skittles, or taffy; but it surprises me that so many people don't know that yogurt is a dairy product, and sherbert, and goldfish crackers!

So educate and advocate - that's what I say.

Wednesday, January 28, 2009

Favorite cookbook and recipes

My favorite allergy cookbook is "What's To Eat?: The Milk-free, Egg-free, Nut-free Food Allergy Cookbook" by Linda Mariehoff Coss. She also has a little website where you can order the book or its sequel and get other food allergy management information at http://www.foodallergybooks.com/media.htm

I wasted a good bit of money buying various healthy cookbooks and dairy-free recipe cookbooks, before I found "What's To Eat?", the book taylored for my son's dietary needs and my semi-skilled cooking. We love the easy pancake recipe with only six ingredients; five of which almost anyone would have in the pantry and then you only need soy or rice milk.
I also like the Italian-style turkey meatballs because I don't eat pork or beef. All the recipes are fairly simple with practical ingredients. "What's To Eat?" sits out on my kitchen counter all the time like an everyday appliance.

In my opinion, forget cheese substitutes - they are yuck! Since Dal never had cheese he didn't develop a taste for it and he, especially, did not appreciate my one or two fake cheese attempts. With one exception: substituting tofu for ricotta in lasagna or a cheesy pasta dish.

I originally got a recipe from a cookbook published by the Food Allergy & Anaphylaxis Network (FAAN) for a tofu lasagna that was fantastic. I have lost the recipe at present, but have been creating variations on the theme for several years now. The FAAN recipe called for adding several flavorings to firm tofu and using the mixture as a layering ingredient in the lasagna along with the sauce and egg-free noodles. But basically, you can season the tofu a little with some dried Italian spices of your choosing (basil, oregano, and/or parsley), add a little garlic or garlic salt, maybe just a couple of dashes of cumin, and a couple of tablespoons of olive oil to give some richness to it. I used two boxes of firm tofu for a 9X13 lasagna. Make your own sauce or use a dairy-free spaghetti sauce, maybe add some sliced zucchini or eggplant or browned ground turkey or sausage and layer away! It always comes out great for me. My husband doesn't think he likes tofu, but I have made this lasagna and put it into two 8 inch square pans and added some mozzerella over the top of one and he eats it without complaint!

TOFU: fun for the whole family!

If you don't like to wing it, I'm sure you could search for dairy-free lasagna recipes or vegan lasagna recipes and find some outstanding options.

Safe baby food

At first, it really wasn't too difficult to accommodate Dal's food allergies. He was a baby and had a rather under-developed sense of taste, so I gave him milk (soy or breast) and vegetables, fruits, and iron fortified rice cereal. Of course, I also had to avoid his allergenic foods myself.
Then I discovered that Gerber baby food had more dairy-free options than Hunt's baby food the hard way. I bought a jar of a vegetable that I usually bought in the Gerber brand in Hunt's brand and fed it to baby Dal, only to discover, after he got sick, that it had dairy in the ingredients. But I quickly learned to read labels, as did my baby boy. At sixteen months, he would refuse to eat any baby food until he saw the jar and determined that it had the Gerber baby on it. Somehow he made the connection and decided that the baby on the jar meant it was safe for him. Like a wine steward, I would present the jar to the Little Sir while he sat enthroned in his high chair. He would look seriously at the label and nod his approval. If I tried to present something other than Gerber he would turn his head away and make a small sound of disapproval.
Eventually, I resorted to carefully removing the Gerber labels, washing the jars, refilling them with homemade food, and re-taping the labels on. He may have known his labels, but he wasn't such a connoisseur that he could tell the real Gerber from Mom's.
But the allergy moral here is: learn to read labels and always read them.

(disclaimer: I have no idea at present which baby food brand has the most foods with dairy in them.)

Saturday, January 10, 2009

The Inconsiderate Allergist

I carried my one year old baby into a small, bright waiting room. A smiling young receptionist greeted me. I began retelling why I was bringing my baby in to see the allergist, but she interrupted me when she remembered our phone conversation of a few days before. She gave me the usual types of forms to fill out and we waited in the waiting room that was otherwise empty at the time.


Soon we were ushered into an exam room where I sat in a straight back chair and held baby Dal on my lap. There was high exam table with its white paper cover, a rolling stool, and a small metal cart. The doctor came in and introduced himself. After some health history questions and my short recitation of baby Dal's reactions to foods, Dr. Lee confidently suggested that we test for egg white, egg yolk, dairy, peanuts (legumes), tree nuts, tomato, and citrus. Dal would get seven small scratches on his back, a different extract would be placed on each scratch, his skin reaction would be watched and timed for 15 minutes, and then a neutralizer would be applied and the extracts would be washed off. Any food substance he was allergic to were expected to cause a hive on the spot where the extract was applied. The strength of the reaction would be judged by the size of the wheal or hive. This is how I understood it.

I held my baby on my lap in his little diaper as the scratches were made and the extracts applied. I wanted to hold him close or wrap him up because I was concerned that he would be cold and uncomfortable in a cool exam room in only his diaper. But Dal sat still and quiet, looking around the room, and endured the scratching and dabbing on his back without complaint.

Then the nurse set a timer and told me not to touch his back during the testing. She warned that he might become a little uncomfortable if we got a reaction. She left the room and within seconds Dal started to squirm. Red splotches were already starting to appear and grow on his tender back. He began to writhe and whine as the red splotches started to swell. Three had appeared almost instantly, then a fourth, then two more splotches. Within a couple of minutes, the splotches had become large wheals - raised, angry red, hives. Dal began to cry.

The nurse popped in and asked, "Everything OK?"

I said, "No. He already has large hives and he is getting very uncomfortable."

The nurse stepped in and looked at Dal's back. She made an inaudible comment and said,
"Okay, just hold onto him, I'll be right back."

Dr. Lee shortly appeared and had a look. He made a vague sound of surprise and checked the time. He told the nurse to go ahead and stop the test at 10 minutes. A moment later he said, "Go ahead and get that stuff off of him."

As the nurse neutralized the extracts and cleaned them off, Dr. Lee left and then came right back with two other of his office staff. He wanted them to see the size of the wheals that had appeared on this baby after only about 5 minutes. They made their sounds of exclamation. Then the receptionist poked her head in the room. Dr. Lee was quietly, but excitedly telling her what was happening with "this baby".

At this point, I'm looking at my whimpering baby with huge, angry hives spreading over most of his back and thinking, "If that doctor brings ONE MORE person in here for show-and-tell, I'm going to kick him in the shins!"

The diagnosis was that Dal was severely allergic to egg yolks and whites, peanuts, and dairy. He was also mildly allergic to citrus and tomato. He did not appear to be allergic to tree nuts.
On a scale of 1 to 4, with 4 indicating a severe reaction, or large hive, Dal was given 4++ for egg, dairy and peanut, and 4 for citrus and tomato. I left with strict instructions about avoiding these substances entirely. Even skin contact with these foods was not recommended. He gave me a written report on the diagnosis and told me he would mail a letter to Dal's regular pediatrician. Dr. Lee said that most likely I would not need to come back for at least a year or two. Dal would probably not outgrow his dairy or egg allergy for at least that long. In a couple of years, he could be retested to see if he was outgrowing any allergy. He would not outgrow the peanut allergy.

Wednesday, January 7, 2009

Infection and seeking resolution

Baby Dal was due for his first year immunizations and already had an appointment with his new Pediatrician. He had been covered with eczema for a couple of days that was particularly bad on his legs. It was mostly rough and red, so I had been putting Vaseline (i.e. petroleum jelly) on it.
When I took him in for his immunizations I pointed out the eczema and told the doctor how I was dealing with it. She didn't have any speculations as to what might be causing it and told me to just keep doing what I was doing. Dal got his shots and I left wishing that Dr. K could have told me more than just "Keep doing what you're doing."

The next day, Dal wouldn't walk. He had been toddling around unsteadily for only about two weeks, so I didn't think much about it at first. I figured he was a little cranky and fatigued from the immunizations and just didn't want to put in the effort of walking. A couple of days later he still wouldn't walk much. He would pull up, take a couple of steps and then plop down again. He wasn't fussy and didn't cry. He didn't seem to be having any trouble, just deciding not to walk. Then we went to a backyard party at the home of some friends. Usually Baby Dal was pretty social and would smile sweetly at everyone giving him attention. I fully expected him to perk up and show off his new walking skills when he got among several adults who were eager to fuss over him. While I carried him he was his usual content little self, but when I put him down to walk, he just stood for a few seconds and then plopped down on his bottom. I tried to encourage him to walk to his Dad, but he whined and pulled his legs up when I tried to lift him into a standing position. He seemed a little uncomfortable in some way.

The next morning, I took him in to the Pediatric Clinic and told the receptionist that since his shots a few days earlier he had refused to walk. After a bit of a wait, she got us in to an exam room. A different Pediatrician, Dr. C, walked in. He took one look at Dal's scaly red legs and said, "Well, that's infected."
I felt a slight flush of shame as I looked at his little legs and realized that I hadn't noticed that they were even worse and had gotten infected. He had broken out with the worst case of eczema in his life on his birthday the week before and it hadn't cleared up since.
Then I felt a bit angry that I had been in just a few days before and had been told to just keep doing what I was doing. Anyway, Dr. C prescribed antibiotics and suggested I use Eucerin cream instead of petroleum jelly. I asked if this eczema could be related to food allergies, but he didn't have a really good answer for me. He said possibly, but he would outgrow it most likely.

After getting the prescription filled and buying the cream, I went home and decided to look up an Allergist. I felt that I had to get some better answers and that if the Pediatricians weren't very up on allergies then I needed a specialist. I found several Allergists in the phonebook and called them. I briefly described Dal's food reactions and his severe eczema and asked if he could be tested or something. Each one told me that he was way too young to be tested for allergies and that they didn't usually see children under age five. I was discouraged, but still a bit angry at all the complacence and lack of solutions for a baby who couldn't eat much and had infected legs. I think I also felt an extra bit of outrage because of Dal's obvious bravery. He must have been in pain, as evidenced by his lack of walking, but he wasn't constantly fussing and crying. He was dealing with the pain and discomfort as best he could.

Finally, as I was searching the yellow pages for other possibilities, like some sort of Pediatric specialist, and I spotted a Pediatric Allergist listed in a town about 45 minutes away. I called and explained the situation again. The receptionist listened carefully and asked me to hold a minute. When she came back on the line, she said that Dr. Lee wanted to see Dal. A feeling of relief and gratitude filled my chest as I set the appointment.

Tuesday, January 6, 2009

Baby with eczema


Dal often had eczema as a baby. I don't remember the first time he broke out with it, but we have pictures from about 5 months old where his red, bumpy face is obvious in the photos. He usually got it on his face, the bends of his elbows, and on his legs. I used lotion and diapering creams on it and it usually cleared up a few days after a break out and then he would break out again in a few days or a couple of weeks. I had no idea at the time that eczema is related to allergies.
I was breastfeeding, so his eczema break outs probably correlated with what I ate. Unfortunately, I didn't begin to figure this out until he was a year old. Since I had become a "stay-at-home" mom and because we were having trouble with introducing foods, I continued to dutifully breastfeed. I wish I had known that I should have been avoiding the top food allergens myself.
Dairy, egg, and peanut allergies are the most common in children. Tree nut allergy is also fairly prevalent. Some other top food allergens are shellfish, soy,and gluten. But sometimes it seems that people can be allergic to almost anything these days; like red food dye, blue toothpaste, water, broccoli - just kidding on the last two- mostly.
If I had to do it all over again, I suppose I would try to avoid the most common food allergens as much as possible during the first 6 months. And, as a breastfeeding mom, I would try not to overindulge in any of the less common allergenic foods like shellfish and gluten.
The American Academy of Pediatrics recommends that if there is a family history of food allergies certain foods should be introduced later:
Cow's milk and dairy products should be delayed until age 1.
Eggs should not be introduced before 2 years of age.
Hold off on peanuts, tree nuts, fish, and shellfish until age 3.

Even though I would take all these precautions including waiting until 6 months to introduce solids, as far as I can discover, there have been no conclusive studies or evidence that eliminating common allergens during pregnancy or while breastfeeding reduces the chance of a child developing food allergies. But serious food allergies are scary enough that I wouldn't take chances.
One thing I do know is that eating foods my baby was allergic to and then nursing him caused him to break out with eczema. I finally figured this out the weekend of his first birthday. His skin was nice and clear and had been for days. He had just started taking his first steps about a week or so earlier. We went to spend the weekend at my grandmother's house and celebrate his birthday there with other family members.
The evening we arrived, my grandmother brought out some boiled peanuts - a southern favorite. I happen to like boiled peanuts despite not being a big fan of peanut butter, roasted peanuts or other forms of peanut foods. I ate a few, just a few, that evening. I nursed Dal and put him to bed in his pack-n-play in the guest room. He slept through the night, but rather fitfully. At first light I heard him waking up and I got out of the bed and picked him up. He felt sort of hot and sticky. I took a good look at him in the dim morning light and saw that he was covered with irritating, red eczema scales and bumps! I was horrified. It had popped up overnight and it was the worst case EVER! I immediately suspected the peanuts.
When we got back home I decided that I had to get to the bottom of this and find out what to do.

Saturday, January 3, 2009

Backstory - What's going on?!!

My firstborn son had his first allergic reaction to a food when he was about 5 months old. I had left my job officially after three months of Family Leave and was so far loving being a mother, even if I was rather uptight and over-protective. He and I were home and I was snacking on some yogurt (keeping up my calcium intake without too much fat) and decided to give my little buddy a tiny taste. I dipped the very tip of my spoon into the yogurt and touched it to his little mouth. Almost instantly little pink splotches starting appearing around his mouth and spreading outward. Then he started drooling. He wasn't a heavy drooler at this stage, so I knew these were two symptoms of something going terribly wrong.

I sat there rooted to the spot staring at these shocking developments, unable to process what was happening. Finally, my baby took a big breath and started to cry. I picked him up and rushed him to the kitchen where I washed off his mouth and face. I quickly put some water in a bottle and gave it to him. He took a couple of sips and then pulled back, wailing again but this time he made a gurgling sound. Somehow, not really knowing what was happening, I instinctively grabbed some Benadryl and gave him a good dose of it. He swallowed and within a minute or two he stopped crying. The splotches that were now all over his face stopped spreading and growing and he stopped drooling. Whew! What a relief! And practically a miracle, I later decided. It could have been much worse if I had not had liquid Benadryl on hand or if I had given him more than a tiny taste of yogurt before I saw a reaction.

This yogurt incident turned out to be the first of many scary incidents to come over the next several months until I finally discovered a Pediatric Allergist who would agree to test my baby for allergies. But again, it could have been much worse if somehow my maternal instincts hadn't led me to be very cautious. Of course, parental guilt also tells me it could have gone better if I had known more or gotten better informed right away.

I did not use milk formula. I am not even sure why, but I supplemented nursing with soy formula. I did not introduce solids until he was almost 6 months old. I first introduced rice cereal. After that I introduced pure baby food veggies and then fruits. So it wasn't until a couple of months after the yogurt incident that another "taste test" brought on his next reaction.

His Dad and I were enjoying an afternoon off and doing some errands with our little baby when we decided to stop by Dairy Queen for a snack. Dad decided to let his bubby taste his ice cream. Before I could think to stop it, he gave him a little taste. Same reaction, different day - no Benadryl. We gave him water again and wiped him off and then left quickly for home. Before we got there he had stopped reacting. I gave him a little Benadryl anyway.

By now, I was beginning to think this must be an allergy. I knew a little about food problems and babies. I knew that introducing solids too soon could cause problems and that some foods should be avoided for awhile. I didn't really know what "problems" these foods could cause and I didn't know the exact timetable for introducing certain foods. In those days, I didn't have internet access at home, and wouldn't have known how to do a decent search if I did, and I wasn't ready to try and do research in the library with an infant on my hip. So I knew just enough to decide to introduce new foods slowly, one at time, and with caution. And I bought more Benadryl.