Two surgeries and eight years later…

Okay, I want to jump from my first son to the history of my second son for this blog. When he was born, he was an extremely colicky baby. He would scream every night for hours at a time. This was a very difficult and dark time in my life. Anyone with a screaming baby can understand. In addition to the colic, he had recurring ear infections. Every six weeks or so, he would get another infection. He was constantly on antibiotics and his left ear drum ruptured twice. So, he was sheduled for surgery to put tubes in his ears. After his surgery, he could have no water in his ears for one year. We had to use special ear plugs for every bath. When he went to the pool, we put ear plugs in and then reinforced his ears with an ace bandage to insure that no water could get in. Everyone at the pool thought that he had a severe head injury:) But at least he could splash around in the water. (I believe that he was 2 or 3 during this time). A few years later, he was still having ear infections every few months. He had had a total of four ruptures in his left ear and was scheduled for a second surgery. This time they took his adenoids out as well. I was pregnant with my fourth at the time and as he awoke, he started vomitting blood. Apparently it had drained down into his stomach during the surgery. As I was sick as well with morning sickness, the nurse had to help both of us and clean up my son. It broke my heart to witness this. Since he was I believe 6 or 7 at this time, I thought that all would be well. Once again we had a summer with no swim lessons and had to take precautions to protect his ears. This was really hard for him. After the tubes fell out, I noticed that his hearing was diminished in his left ear. He was talking to his Dapaw on the phone and couldn’t hear him at all. I then switched the phone to his other ear and he could hear perfectly. So we had even more visits to the doctor’s office. As a side note, every time his ear drum ruptured, we had little signs and little warning. He would wake up at 1 am screaming, we would rush him to the hospital and by the time we got there, it would have ruptured already, if not then, then by the next morning. So, any time he said his ear hurt, even the slightest, I would pack up all the kids and rush off to the doctor’s office, urgent care, or the hospital, depending upon the time of day. When his ear drum ruptured the fifth time, I sobbed. He woke up, said his ear hurt, and by the time we got to the doctor’s office, it had already ruptured.

So…why do I bring all of this up? We finally found a specialist when he was eight who told us that we needed to take him off of all dairy products. What? I had never in my life heard of anything like that. His older brother had the severe milk allergy, not him. Besides, he LOVED pizza, ice cream, milk on cereal, etc. I decided to do an experiment. In the past he always had mucus and green stuff in his nose. After the fifth rupture, he was also getting infections every six weeks. So we took him off of all dairy. Completely. No whey, no casein, etc. His nose cleared up and he hasn’t had an infection since.

As a side note, I brought him to an allergist and asked him about the possibility of a milk allergy and ear infections. He said that it has never been proven and didn’t believe me. I don’t think that I’ll be seeing him again:)

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Birthday Parties

One of the hardest things I’ve had to witness is watching my son interact at birthday parties. Many times we arrive and he can’t have the ice cream, the cake, the pizza, or any of the goodies. I usually ask if I can look through their pantry for something he can have. Often he ends up with a graham cracker or a Ritz cracker with honey or peanut butter on it.

These situations really make it hard for your little one to belong and fit in. One idea that I want to start doing is to make a whole batch of chocolate cupcakes, frost them, and then freeze them. That way whenever he needs to go to a birthday party, I can just grab one of the cupcakes and send it with him. I also want to have the “So Delicious” ice cream on hand. It truly is “purely decadent” as its label states.

Another idea for birthday parties is to ask ahead of time what the meal will be. I have done this in the past and it has really helped. If the meal is pizza, then I can grab a frozen calzone (homemade – dairy-free) and at least he can have something that tastes similar. Another quick pizza is taking an English muffin or Bagel (READ THE LABEL!!!), spreading spaghetti sauce on top, adding a few pieces of pepperoni, and cooking it on broil for a few minutes. This is a very quick and tasty pizza. If pizza is too hard to make, then something similar is Hamburger Macaroni (www.milkallergycompanion.com). It is easy to make and he loves it. Our favorite hot dogs are the Hebrew National Hot Dogs. There is no dairy and they are DELICIOUS! I always like to have a few on hand in the freezer as they are a really quick and handy lunch that can be brought to almost any social setting. Preparation is the key to success with birthday parties.

At one birthday party, I was touched by the care that the mother took to make my son feel welcome. She called me ahead of time to double check ingredients. She ordered Papa John’s pizza for the kids, and ordered a Papa John’s pizza with no cheese on top just for my son. (Papa John’s pizza crust doesn’t have milk.) She also made the cake herself and made it dairy free. It is amazing how much people are willing to accomodate an allergy if they are just educated.

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The $90 Surprise

A year ago I purchased a 50 lb. bag of powdered soy milk for $90 to use in times of emergency and for baking. On the front of the package it said, “Non-dairy.” I opened the bag (first mistake) getting ready to put it into smaller containers for storage. I hesitated for a moment and decided to read the label just in case and to my horror it said, “Sodium Caseinate.” Now I knew that casein had milk, but I wasn’t sure about sodium caseinate. So, once again I did a search on the internet for “sodium caseinate” and found out that sure enough it had milk. Of course, because I had opened it, I couldn’t return it. Fortunately I found someone who used soy milk and didn’t have a milk allergy. I sold it to them at a minimal loss. Once again, ALWAYS READ THE LABEL. Also, when in doubt, call the manufacturer.

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Thanksgiving at Dotie’s House

Shopping for our visit to California took almost 8 hours for my mother-in-law. She meticulously read every label and did everything she could to ensure a dairy-free Thanksgiving. This meal was the first time we tried to experiment with different dairy-free recipes and desserts. We made “soupy” chocolate pudding from soy milk (I’ve hence improved it: www.milkallergycompanion.com), runny mashed potatoes, and crumbly cookies. Obviously we had a lot to learn on how to cook without milk. For a yummy treat, she made these delicious apricot sticky buns. As we were eating them, I noticed that my son started breaking out in hives around his mouth. I looked up at her, and I said, “Do these have milk?” She panicked a little, and said, “No I made sure to only use soy milk and I’ve read all the labels. I even used real butter instead of margarine!” Instant awareness dawned on both of us as we realized where real butter comes from. We both turned to look at my son’s hived-faced smile and made a run for the Benadryl.

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The “Almost” Emergency Surgery Visit

Now that I knew the many hidden dairy ingredients, I was constantly vigilant. One night we went to my Grandma’s house and watched a movie with popcorn. I kept the buttered popcorn in a separate bowl and had some air-popped popcorn for my son. During the movie, my son was really quiet, which always means trouble! I found him behind a cushioned chair eating some of the buttered popcorn. Terrified, I took the popcorn away and cautiously waited for the reaction. When nothing happened, I went home, grateful. At 1:00 am, I was awakened by piercing screaming. Why is it that kids and emergencies always happen at 1:00 am? After an hour of screaming, we rushed him off to the emergency room. When we got there, he was still screaming. Since he couldn’t verbalize what was wrong, all we could do was go through the process of elimination with the doctor. The doctor felt his tummy, and it was hard like a drum. So, off we went for x-rays, blood work, and a large dose of Tylenol for pain. All the time my son was screaming uncontrollably. When the x-rays and bloodwork came back, the doctor said that it didn’t look good. His white blood cell count was up. He had multiple physicians come in to take a look at my son and at the x-rays. He took my husband and I aside and in a somber voice said that the x-rays were hard to read, but it was possible that his intestines were filled with infection and that they could burst at any moment, requiring immediate surgery. He said that there wasn’t a lot of time. What!?! I wanted a second opinion. Just then, the Tylenol kicked in, and my son started letting out long streams of gas. One long toot after the other. Then, my son was quiet as a mouse, as if it was as normal a night as any. The doctor went over to him, felt his tummy, and it was nice and soft again. He looked, dismayed, at the x-rays, and said that many a doctor have been fooled by gas bubbles. Gas bubbles? Immediate surgery? What looked like infection filled intestines was actually intestines filled with gas bubbles. I couldn’t believe it. Exhausted and relieved, we went home, and shortly thereafter, the sun began to rise. We had many follow-up visits and blood work just to make sure that everything was okay, and then it finally dawned on me…the popcorn!

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Nature’s Alternative to Dairy Products!

I thought that I had become quite well versed at checking labels, until one week my son’s rash was off the charts bad. I went through everything that we had eaten down to the bread and whole wheat crackers. I couldn’t find milk products anywhere. Finally I went to make my son a toasted “soy” cheese sandwich. His innocent baby blue eyes looked up at me and he said, “Mom, did you check the label?” I said, “Of course I did.” He said, “Will you check again?” I said, “Son, it says ‘Nature’s Alternative to Dairy’ right on the front. Of course it doesn’t have milk.” He asked again, “Will you please check the label?” “Fine.” So I looked at the label and sure enough one of the ingredients was “casein.” I had been feeding my son “poison” without even knowing it! This wasn’t the only time a product has been mislabeled misleading innocent consumers like me to buy their product. Cool Whip says “non-dairy” on the label, but it too has “casein.” Always double check the label. When in doubt, call the manufacturer. I did so with microwave popcorn (labeled “natural flavor”) and sure enough, it had milk. Thank goodness I didn’t feed that to my son!

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A HUGE tip!

After we discovered my oldest son’s milk allergy, we began a long journey of mistakes. I remember when he was still in diapers, we went to a fancy restaurant. I ordered a fruit slushie that had a dollop of whipped cream on top. We were all eating peacefully when my son took a sip of my drink. I figured that it would be okay since the whipped cream was only on the top, and the straw was taking drink from the bottom of the glass. Ten minutes later, he started vomitting all over the table, carpeted floor, and chair. My husband heard the lady next to us say, “I’m not hungry anymore.” They got up and left. Unsure what to do, we quickly go up, paid, and left the largest tip I’ve ever left. I’d hate to have been the one on bus duty:)

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Chuck E. Cheese, no milk please!

Going to restaurants with a milk allergy can be a real challenge at times. One time we went to Chuck E. Cheese as a family. My oldest son wanted to order food, however, most of the menu items seemed to have milk. After much inquiry, we finally discovered that the dough for the breadsticks was dairy-free, however, they lathered each set with butter while raising. I asked if they could start a new batch but put no dairy on top. So, while the rest of the family ate pizza, my son waited patiently for his breadsticks to dip in marinara sauce. Thirty Minutes later a hot order of freshly baked breadsticks arrived at our table. I took one look at them and then sighed as I saw the mountain of parmesan cheese piled on top. I looked up at the waiter, and he smiled and said, “We made sure that there was no butter on top.” I smiled, thanked him for the breadsticks and for his time, and started laughing. With a name like Chuck E. “Cheese” I should’ve known better. I cut the top half of the breadstick off, and gave my son the bottom portion, hoping that none of the cheese had gotten on it. It’s amazing how little people know about what contains dairy:) My advice…never assume that the waiter knows. Always check the label!

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Welcome to the Milk Allergy Companion Blog

Hi! I’m a mom of five precious cherubs who all have one thing in common. Me. Just kidding:) Actually, 4 out of 5 have all suffered in one way or another from a milk allergy. I am writing this blog because ten years ago, when it all began, I had no clue where to go or what to do to help my oldest son. If I had known what I know now, life would have definitely been easier and we would have had fewer trips to the emergency room. I hope that by posting this blog it will in some way help someone else who suffers from the same thing.

Let me start out by saying that I am NOT a doctor. Although I’ve dealt with this for ten years, I cannot be responsible for the advice given, and I encourage you to go to the appropriate source to get help for you or your child. That said, I do have a few lessons learned and “not-so-funny” stories that I’ve gone through. As I’m new to blogging, I hope that you bear with me and enjoy reading:)

In the beginning there were two college students desperately in love and willing to take the plunge into marriage. I was nineteen and he was almost 24. One month later, I was vomiting 5-20 times per day off and on for the next five months. 4 months later our oldest son was born. All seemed well until this rash appeared on his chest. He would itch it until it bled. We went to countless doctors and specialists. None of them checked for a milk allergy. We used multiple steroid creams to no avail. When he was 8-9 months old, I tried formula (I had nursed him up until that point except for one bottle in the hospital.) He immediately vomited the formula, which I thought was odd, so I continued nursing him. The rash was still present.

A few weeks later I tried yogurt. After one bite of yogurt, he went into antiphylaxis and we rushed him to the urgent care. His eyelids swelled shut, and his entire body swelled up. It was surreal. I became prenant with our second son and was still nursing, as I didn’t want to try formula again. Of course I got sick with my second pregnancy as well. My oldest son started losing weight, so naively I decided to give him a bottle of straight cow’s milk. This time his eyes rolled back and he had labored breathing. Finally we found an allergist who told us that he was allergic to milk and eggs.

And so our journey began…

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