Milk Allergy: Big Problem For My Big Baby!

When our son was born, I waited with baited breath for his cry.  When my daughter was born, she barely cried.  There was a long delay and then there was only a muted little cry.  I just laid there, feeling very helpless, watching while the nurses surrounded her. I noticed my doctor kept looking over his shoulder at the nurses and I worried that something was wrong.  They took her out of the room and later told me that she turned blue and was in the NICU.  So when my son was born screaming, I was very thankful.  But, I was a little thrown when he continued to scream; it never stopped!

I mean my child didn’t cry, he screamed!  He had a high pitched scream that was so loud, you could hear it as they were bringing him from the nursery to be fed.  I could actually track him without seeing him.  I would hear the deafening cry as it got louder and louder, until it would finally reach my room.  Every single time the nurses brought him to me, he was screaming; and the nurses would bring him to my room every two hours. I could tell that they did not want to deal with it, or listen to it, in the nursery.

I was concerned that he was not getting enough to eat because he always seemed to be so upset and so hungry.  He almost seemed frantic when he would eat and he sucked so hard that tears just ran down my face from the pain.  I asked the nurse when my milk would be in and she said, “Honey, it’s already in. Look at how he is sucking and you can hear him swallowing too.”  Sure enough that was the case. I had C-sections with both kids, and with my first child, it took my milk around a week to come in. I was pumping like crazy so that they could take three drops of milk down to her in intensive care. My milk finally came in, but not as quickly as it did the second time.

My son ate all the time; it seemed like he never got enough.  I was exhausted from lack of sleep and worry over the intensity of his scream.  I kept telling my family that something was wrong with him. We were two months in and it only seemed to be getting worse.  My doctors were no help; they actually only made things worse by patronizing me.  I would come in and tell the nurse that he really would not stop screaming (or eating) and she would look at me and say, “Ok new mom, we will see what we can do”.  Then the doctor would tell me that “Babies just cry a lot”.  Seriously! Babies cry a lot!  Did you have to go to medical school to figure that out?!  I mean thank goodness you were able to solve this mystery.  And yes, I was a “new mom”, but to my second child.  I already had a little girl who was born a month early and had been in intensive care; I had enough experience to know when there was a problem.  Well, the doctors never offered any other explanation. They said that he could not possibly have a milk allergy, because he was too big!?!   All they did was make me feel even more hopeless.  I continued to research the screaming on the Internet and I found out about milk overproduction.  I looked down at my soaking wet shirt and pondered this.

Am I making too much milk?  Well, I do seem to be making more milk than last time.  My clothes are always wet. My bras are a mess.  Every time I get out of the shower, it pours out of me uncontrollably; I actually have to wrap them in towels until it stops. My husband would just stand there in absolute amazement as he watched me cover the bathroom floor with milk.  I remember him saying, “Wow, it looks like they are working better this time!”  I also remember how the little guy would pull away quickly and milk would spray across the room.  So, am I making a lot of milk?  Yes, I am making a lot of milk; I mean the stuff is spilling out of me like a prize-winning dairy cow.  I decided to focus on cutting back my milk supply so that it would not spray down his throat and choke him.  I hoped that this would help alleviate some of his pain.

I nursed on one side at a time to cut back the supply and it did seem to not shoot down his throat anymore.  It also helped with my constant leaking and dripping but, he just seemed to suck even harder now and still screamed when done eating.  I was a mess trying to figure out if he was now getting enough food or if he had some other problem.  At five months old, the doctors decided he should go to the hospital to be checked for reflux and GI problems.  I was very conflicted about the hospital tests, but reluctantly agreed.

The Barium swallow test was arranged and the hospital sent the instructions.  You are supposed to starve your baby so that they will be hungry and willing to drink the nasty stuff they feed him (Barium sulfate) through a bottle.  I still fed my baby very early that morning, because I just could not do that to my kid.  Anyway, we get to the hospital and they take us back to this stark room with a large metal table and various X-ray machines; the room was very cold and intimidating.  The big guy that took us back had no feeling for children, despite the stupid puppy dog scrubs he was wearing.  So, this guy takes us in the room and tells me to take the baby out of his clothes because there can be no metal snaps or zippers – a little fact that I would have loved to know before we showed up!!!  He takes my little naked baby and straps him down, with three large Velcro straps, to this metal table.  The straps held him like a mummy; the baby was now completely unable to move.  He then put something resembling a thin blanket on him.  I asked how long my baby was going to have to lay there and this dork says that he has not seen the doctor yet, but is going to go look for him now.  I looked at my screaming child. He was truly terrified about being strapped down and unable to move and I went into momma bear mode, protecting her cubs.  I proceeded to tell captain yahoo that my child was not going to lay around here scared and freezing while the doctor freshened his coffee and checked his email (I used to work at a hospital and I saw this way too often).  I told him that I was taking my baby off the table until he walked in with the doctor.  He asked for two minutes while he ran back to look for the doctor.  He was back fairly quickly and said that the doctor would be in soon.

After about five minutes, this kid wearing a lab coat walks in.  We were at the hospital very early in the morning.  In fact, we were the first appointment of the morning and I could not tell if this kid had just woken up, or had never gone to sleep, but he looked rough!  He does not even look me in the face, just says that they are going to be looking for signs of reflux and problems in my baby’s esophagus.  They give my baby some milky formula with properties that show up on the X-ray.  My baby laid there sucking on the formula and then would pull his head away to scream.  The big guy would shove the bottle back in my baby’s mouth and they did this until the doctor abruptly stopped.  The doctor then looked up and said that he could go further with the test, but does not see any signs of serious reflux or esophageal problems. He then stands up and says that he will go call my pediatrician, because she did not provide detailed information as to the areas to be checked or her major concerns.  Now, I was seriously irritated.  I mean, this is information that my pediatrician should have provided so that we do not have to endure this again.  But, the brilliant Doogie Howser should have gotten that information before he began this procedure (instead of screwing around back there texting his girlfriend). This is stuff that should be done when my cold, scared baby is not strapped to a metal table.  I looked at him and told him to “Go call my pediatrician and inform her that I said to stop the test.  Tell her that she did not provide the appropriate information and I am not going to make my child suffer any longer while you try to track her down.”  I knew that she currently only worked on Tuesday and Thursday and today was Wednesday.  This kid was not going to talk to her any time soon.  I went over and got my baby off of the table.  I gave him a big hug, got him dressed, and we high-tailed it out of there.

So here we are, back at home, with no answers.  My baby is still screaming, I am beyond exhausted, and desperately need to find a way to stop all of our suffering.  I kept searching the internet about food allergies.  I finally found one doctor who said that while most children with milk allergies are small and don’t gain weight, a few children with are very large and actually overeat, due to the fact that their tummies hurt.  He said that that he watched a baby continually try to nurse because the baby was in pain and wanted to be soothed.  Unfortunately, the nursing was contributing to the pain, so the baby was over eating, in pain, and miserable.  This was a description of my baby – he was huge, eating constantly and in pain.  My pediatrician said that if he continued to put weight on like this, he would be the size of an elephant.  I also saw the way he nursed.  He was usually not relaxed when he nursed.  He may be relaxed for a moment and then would groan and suck frantically.

I called and made an appointment with my pediatrician.  I took a dirty diaper with me so that they could analyze the diaper.  It seems that children with milk allergies also have blood in their poop and a simple test will verify the presence of blood.  My pediatrician already said, on numerous occasions, that she did not see any signs of a milk allergy so I was going to have to force the subject.  I get there and she says again that babies just cry and babies with milk allergies don’t gain weight, blah, blah, blah.  I ask her to just check the diaper to make me feel better.  She reluctantly agrees and passes it to a nurse to analyze.  Meanwhile, she is jabbering on about ways to try and soothe him when the nurse walks in and nods.  I must have looked confused because the nurse finally says, “It was positive for blood.”  My pediatrician was surprised, but said “Well, OK” and she went and got some information on infant milk allergies.  She said that he probably is allergic to both milk and soy and told me to start formula or cut all dairy and soy from my diet.

I decided to try and cut all dairy and soy from my diet and see what happened. It was not easy to do, but I did it.  Unfortunately I had to give up many things that I loved, yet again!  Had I not already given up alcohol for 9 months!  Now I had to give up lattes and milk chocolate and I was forced to survive on Rabbit Food!  Luckily, the baby did start to feel better.  His crying decreased, and he slept a little better, but you started to see signs of a very strong personality.  When my kid wanted something, he wanted it now!  It seemed the months of constant pain left my kid with a short fuse.  It was like the perfect storm – when you combine a very ticked baby with his fathers’ insanely determined genes (his father is a former Olympic athlete), you were left with one rough ride.

At the age of two, he can drink a little chocolate milk and eat a little white cheese, but he basically wants nothing to do with dairy products.  They don’t seem to make him physically sick anymore, but he really can’t stand the taste.  He is still a demanding little man (yet totally adorable) with an abundance of energy.  I am now starting to fear that I will be exhausted for the rest of my life.  Between my very active children and my insanely busy husband, it is like living with a family of Energizer bunnies – I am starting to think all that rabbit food may be to blame!

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