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!

Anaphylaxis: No Tree Nuts For Us

My son was born with a milk allergy, so in order to continue nursing him, I had to remove all dairy and soy from my diet.  I had eaten peanut butter through both pregnancies and was now starting to add more nuts to my diet; I was trying to find healthy snacks that did not contain milk, but could provide some protein.  I found a few brands of vegan fruit and nut bars and would eat them as snacks.

My daughter was two weeks away from her third birthday and I had never given her tree nuts.  I held off as long as possible due to doctor recommendations that this will help prevent nut allergies.  She had very recently had a chipmunk-sized bite of a peanut butter cup and had no reaction, but I was still nervous about peanuts.  Almost daily, she watched me eat these fruit and nut bars and was very interested in them.   She kept asking to try one.  I decided that she was almost three and we have to try it eventually (like the peanut butter) and I gave her a tiny bite.  When she eats it and appears to be fine, I  breathe a sigh of relief.  I decide that she must not be allergic to nuts since this particular bar contained almost every kind possible.  A few days later, I found out that this was not the case.

It was now Friday, October 15th.  My daughter normally went to preschool on Fridays, but this particular day happened to be a teacher work day. I had a regular babysitter who came one day a week.  My son was 6 months at the time, and the weekly babysitter allowed me to get out (without my children) and run errands.  Anyway, I had our babysitter there that day and I made a run to target for diapers and to grab a few things for my daughters birthday party, which was set for that Sunday.  On the way home I brought her some chicken nuggets from a place called chick-filet and I grabbed myself a salad.  Well, all was well that morning.  I got home around lunch time, we all ate together, then the children went upstairs with our babysitter to play while I did laundry.  Around 2:00, I decided to start making the spaghetti sauce for dinner.  Our babysitter left at three and this gave me some alone time in the kitchen. Well, pretty soon, the crew comes downstairs and my daughter tells me that she wants a snack.  I gave her a cup of juice and she asked to try the sun chips on the counter.  I let her have a little hand full of the sun chips and then decided that I would try one of my new larabars which contained finely chopped dates and cashews.  I was down to the last bite and my daughter asked if she could try it.  I decided it would be fine, since she had a different bar last week and had no reaction, and I gave her the last bite.  She said that she liked it and asked to have another bite, but I told her that dinner would be ready soon.  I told her to go play because the babysitter had to leave soon. 

As she got up from the table, I looked at her and noticed that she scratched her tongue with her fingers  and then took another sip of juice.  A few minutes later, she told me that she needed to go potty and set down holding her tummy.  She then decided that she did not have to go “poo-poo” and got up and ran upstairs.  I was hustling to take the clean clothes into our bedroom when I heard my name being yelled from upstairs.  I went up and saw my daughter sitting on the bathroom counter and my babysitter told me that she had just thrown up.  I looked at my little girl and asked her if she was ok.   My daughter said “yes mommy.  I feel much better now.” I had not put this all together yet.  I grabbed a towel and started to clean up the mess wondering if she was getting a tummy bug.  I cleaned it very quickly, then went to check on my daughter.  I noticed her face was getting red and she was starting to rub her arms.  I went down to grab the phone and call her doctors office.  I told them what happened and they told me to give her a teaspoon of Benadryl and bring her in.  I ran and got the Benadryl, forced my child to take it and I got her dressed.  I asked the babysitter to lay the baby in the car seat and I  grabbed a towel to lay on my daughters lap in case she grew up again.  I got them both buckled in the car, and as I was saying goodbye to our babysitter, I saw her face.  She looked at me and said “this is not good is it?” then hugged us and went to her car. 

As I was backing out of the garage, I noticed my daughters face was much more red.  It is about a mile to the back entrance of our neighborhood.  I finally got there only to be behind a very old man driving a uhaul. As I sat there waiting for this old guy to decide to turn, I looked back and saw her face starting to swell.  The panic was starting to set in but I was caught behind a guy going 32 miles per hour, on a very curvy back road, with no way to pass.  Knowing that my cell reception did not work until I reached the next intersection, which was one mile up, I held my phone with my husbands office number already programmed in.  I pushed call and heard my husband say “I’m in a meeting.  I will call you back”. I screamed in the phone “NO!  You will talk to me right now!” I quickly told him that our daughter took a bite of the nut bar, vomited and now her face and eyes were completely swollen shut and her head was starting to bob around in the back seat.  He told me to go to the emergency room and I told him that I did not think that we were going to make it.  The traffic was horrendous.  I was driving as quickly and safely as I could.  I was blowing my horn and asking old goats to move over, but having no luck.  Our pediatricians office was in two miles and the hospital was at least 10 minutes past that so I decided to stop at the doctors office first and they could help while I waited for the ambulance.  I grabbed the stroller and attached the infant car seat, that my son was in, and then grabbed my daughter and carried her inside.  The nurse that I had just spoken to on the phone happened to be standing at the front desk handing the receptionist a form. She looked up at me and my daughter and I said very quietly “help please”.  She walked back and yelled “We’ve got anaphylaxis!  We’ve got anaphylaxis!”

I walked into a room, while holding my daughter on my left side, and pushing the stroller with my right hand.  I parked the stroller in the corner and held my little girl very tight.  They asked me when all of this happened and I told them “around 2:30.  I gave her the Benadryl about 15 minutes ago and the swelling did not start until we got in the car”. They asked me how long it took to get there and I told them about 12 minutes.  One nurse had put a monitor on her finger and was yelling out numbers to a physicians assistant, while someone else asked me questions.  A nurse ran in with an epi-pen and a tear slid down my face.  The nurse looked at me and said “this is scary,  but she is going to be all right”.  At that moment I heard these horrifying words, “You can’t do the epi. She will arrest!”. Her heart rate was off the charts and she was heading for cardiac arrest.  I heard a cart being pushed down toward our room and listened while the doctor and nurse brainstormed.  “What about ………” one would say.  Then the other would say “No. She will arrest” or “it is too dangerous”.  Finally the nurse shot out some name and the doctor said “let’s try!”

For a split second, my daughter starts to wake up and is freaking out.  Her eyes are completely swollen shut, her face is so big that she is completely unrecognizable, her entire body is bright red and she is clawing at her arms.  They had already given her a second dose of Benadryl and they were now trying to get her pants leg up to give her this shot.  Someone at the door yells “just stick it through her pants”.  They stick her in the leg and then she let out a horrible scream; it was truly awful!  The doctor looked at me and said “The swelling is so bad that we are going to call an ambulance.  Is there anyone who can watch your baby so that you can go to the hospital?” I tell her no.  We don’t have any family here and my babysitter had to go pick up her own children.  “I will just have to bring my baby and meet her at the hospital” I say. My husband had been calling and wanting to know why they would not give her the Epi.  Finally the doctor gets on the phone with him and she explains that even after all of the Benadryl and steroid shots her heart rate is still too high and that this is a very serious situation.  She then tells him that he will need to meet us in the ER.  She walked out and patted my shoulder as she looked at my swollen-faced little girl and my screaming baby.  My baby was due to eat at 2:30, when all of this happened, and now he was starving and mad. 

I was still holding my daughter on my lap and all of a sudden she turned to look at me and tried to talk; I had never been happier in my life.  Through the entire experience she was eerily quiet except for two blood-curdling screams, but all of a sudden there was a change.  She had not actually spoken since we were in the car.  She was answering my questions in the car until she started slurring her words.  Right after the started slurring, her head just started bobbing and rolling around  The nurse came in and asked if she could help.  I told her that I needed to feed the baby.  At that time the doctor walked in and saw my little one looking up and trying to talk.  The doctor smiled and I felt such relief.  She looked at me, my daughter, and my screaming son and said ” look, I don’t want you to have to go to the hospital unless you absolutely have to.  You really have your hands full and your husband is still pretty far away.  It looks like she is starting to come around.  Do you still want to go to the hospital?”  I was very confused at this point.  Nobody wants to go to the hospital, but I want what is best for my child.  I looked at the doctor and tears quietly ran down my face while I said “I don’t know.  I don’t know what to do”.  She looked at my daughter and they checked her breathing and heart rate and she said “i think the swelling is finally starting to go down.  Just sit here a few minutes.  I don’t think you are going to have to go to the hospital.  Call your husband and tell him to come here instead.”

A wonderful nurse held my daughter while I fed the baby.  She rubbed my daughters arms and back to try to keep her from scratching herself because she itched so badly. By the time my husband got there, her swelling was much better.  Her eyes were slightly open now and her face was not nearly as large, but it was still very shocking and he immediately got tears in his eyes when he saw her.  The doctor told him that this was a major improvement and it was the most swollen she had ever seen someone.  I had been there over an hour now and she was continuing to get better.  One nurse stayed in the room with us for over three hours that day.  She talked to us and asked my daughter questions.  They found out her birthday party was in two days and asked what she wanted.  At that point I would have promised her anything.  I was just so happy that she was ok. 

Around 6:00, they came in and gave me an Epi pen and told me how to use it.  They also told me, that if she is given the Epi pen,  she must be taken by ambulance so that they can resuscitate her.  They explained that her allergy and her reaction is very severe and that she was heading into cardiac arrest.  They told me to watch her very closely and sleep with her that night because these things can rebound and she may have difficulty breathing again and have to go to the hospital.  The doctor looked at my husband and said that if I had waited for an ambulance, “there is a good chance she would have died”.  We took our red-faced little girl out of the building and I asked my husband to drive her home.  I put the baby in my car and called my mom.  I had been very clam through this entire ordeal but, as soon as my mom answered the phone, I lost it.  “She almost died!  They told me she almost died and how lucky we were!  Mom, I almost lost her today!”

A cashew almost took my daughter away from me!  This was the day that food became scary!