Milk Protein Intolerance

As most of my readers know, my son Max has a milk protein intolerance (MPI).  Lately, I've felt like I should document it- how we found out, the dietary changes, etc.  There isn't a lot of information out there and if someone else is struggling or has a child that is struggling with this or something similar, my documentation could be helpful.  The organization is going to be tricky because of so many overlapping symptoms spanning his 4.93 years.  Maybe I'll organize by age...


Age 0-1
The Beginning:
I noticed within the first couple of weeks of Max's life that something wasn't quite right.  He was extremely fussy and gassy and would have long periods of inconsolable crying.  He never spit up an abnormal amount and would never EVER refuse a feeding.  He ate well and gained weight well but always seemed uncomfortable.  As a new mom, I was quick to think something was wrong and in this case it was probably helpful.  Max was breastfed exclusively so that meant that it was up to me to make the dietary changes.  The first thing I eliminated was milk and it made a considerable difference.  Now, it is never easy to give up food that you are used to eating, and I didn't eliminate very faithfully, but we always noticed a positive change in Max when I did.  Other than gassiness and colic, he had mild eczema, congestion, and a sore bum.  We spent many hours with Max laying on his tummy across our arm trying to ease his discomfort.   


The Sleep Problem:
As Max got a little older, sleep became a problem.  When he was old enough to be expected to sleep better, it never happened.  He wouldn't sleep at all unless he was in bed with Jason and me.  Then he started having night terrors.  As a baby, he would awake suddenly and just scream.  His eyes would be open but dazed and he wouldn't respond to anything.  We were so frightened when these started.  We didn't know what was going on with our baby or how to console him.  We would be on the internet at 3 a.m. searching for answers.  We discovered night terrors.  They would usually last for 30-45 minutes and then he would suddenly stop, wake up a little, and fall back asleep without realizing what had just happened.  Max wouldn't have night terrors every night.  They probably happened only once or twice a month.
He also experienced insomnia here and there.  We didn't realize the sleep problems were related until Max was 3.


Max was breastfed until he was 18 months old.  I tried to eliminate dairy when I could, but there was only a significant reaction when I had obvious things like a glass of milk or ice cream.  We had mostly dismissed any problem thinking that it was just something he was sensitive to as an infant.  All infants are fussy and have gastrointestinal issues at some point.


Age 1
Sudden Onset Reactions:
On Max's first birthday, I made him a lemon cake with whipped cream and chocolate shavings.  He liked it a lot and ate his entire piece.  Once we had cleaned him off, we noticed that every place the food had touched his skin was covered in a bright red, raised rash.  We started thinking about the milk being a problem again when this happened anytime he ate anything with dairy.  Pesto, anything made with a cream soup, macaroni and cheese, etc.  Because of the rashes, I started asking his pediatrician about it.  He didn't have any answers so we just tried harder to eliminate.  We started giving him rice milk with a little oil to add fat (which a healthy friend had suggested), not that he was lacking at that point in his life! 


Since he was now eating real food with us, I had to make more changes to our diet.  Pretty much everything I made had milk it really was a big change and we took it slowly.  Also, when he was just starting to eat, it was the obvious things that would set him off so he didn't drink milk or eat cheese.  We weren't very strict about it and he was still getting quite a bit of dairy in his diet...most of it "hidden" where we hadn't learned to look.


Max was no where close to sleeping "through the night" and was still experiencing night terrors.  Other than sleep problems, he was a happy baby and we didn't consider his milk intolerance to be a very big problem.  


Age 2
Before Max was 2, he and I moved to Idaho while Jason was deployed to Iraq.  I was pregnant and didn't cook dinner while we were there (sorry mom) and Max ate what the rest of us were eating...including lots of dairy.  His previous issues were still at the back of my mind, but they didn't seem to be a problem, so he ate whatever.  I potty-trained Max the week before his second birthday, he was going to the bathroom like a champ!  He was happy and had my undivided attention and grandma's, and grandpa's.  He continued to have sleep problems.  I had to force him to nap and then he would be awake until 10 or 11 at night and I had to force him to go to sleep.  He didn't sleep through the night and would have night terrors occasionally, though not nearly as often- I can remember only a couple during the 8 months we were in Idaho.  
Things were going well but then he started showing aggression toward other children.  I dismissed it- it was his age, his daddy was gone, it was the pregnancy, he was spoiled- he was still really sweet most of the time, and he was 2.
Then Max didn't want to poop.  He would hold it in for days and then when he would go, he would have blood in his poop.  And it was obviously blood.  Not just a little red, but dripping into the toilet.  Very scary.  His pediatrician said it was probably because he was holding it in and to give him Miralax so he couldn't hold it in.  He still bled.  
Max's last night terror was the night I started labor with Evelyn.  Thank goodness.  
Max became very aggressive after his sister was born.  My sweet, perfect little boy was turning into a monster.  It was more than just new baby aggression, too.  We are still dealing with the after-effects!
Once Jason came home and we moved to Connecticut, we were better at eliminating the milk from his diet.  We were better about just removing it completely from our home.  


Age 3
When we moved and were settled, I asked the pediatrician again about what was going on.  I wanted allergy testing done and I guess I wanted a label to the issue.  Mainly because I felt like I wasn't being taken seriously.  I would tell people that Max couldn't have milk but if I wasn't careful about watching, they would give it to him.  There were serious behavioral problems when the milk was in his body and it was very obvious that the milk was causing the problems.  The doctors didn't have answers...I don't know what they can say other than just to eliminate...the allergy test came back negative.  We were even referred to a pediatric gastroenterologist at Yale.  Nothing.  


Age 4
We had changed our diet so milk was no longer a part of it at all.  


It took us awhile to realize, though, foods such as Goldfish crackers and breads with milk, whey, casein, etc. in the ingredients also affected him. I read every single food label and Max knows how to read them now as well.  I don't let things slide as much as I used to because I know that even the smallest amount of milk will set him off and it is just not worth it to deal with the consequences.  


It is hard when we are away from home.  It's hard because we grew up in Idaho and a large part of our family's livelihood depends on dairy farmers.  For a long time I felt like to my family, Max's issues were just a joke.  I was over-dramatic and over-controlling, etc.  But last time we were in Idaho, in January, I think they finally realized just how serious it was.  Max was going to preschool with Lucy and they were given Cheez-Its.  Max knew better and it was no one's fault, but all the other kids were eating them, and that's always hard.  Max went crazy.  He became over-sensitive and aggressive.  He woke up multiple times in the night throwing huge fits, he had digestive issues, he had an increase in OCD behaviors.  He looked like a drug addict because of the way he was compulsively rubbing his face and the black circles under his eyes.


There are lots of times when other people are eating treats or something really yummy and it breaks my heart that Max can't have it.  Most of the time, he tolerates it alright but there have been a few times when he has become genuinely heart broken and I have to pull him aside to talk about it.  I have to remember that he is a very lucky boy and look at the bigger picture.  There are so many kids in this world with so many issues much, much more challenging than a milk protein intolerance!  


Really, it is teaching him self-discipline and has become a blessing to our family.  I could never take Jason's ice cream away from him, and don't even think about touching my quesadillas when I'm pregnant, but most of the time our entire family is dairy-free.  Until we had to deal with this, we ate whatever we wanted without thinking about the effect it was having on us.  Now that we have experienced a food, even the smallest trace, having such a huge negative effect on our son, we've started thinking a lot more about what we eat and have made a lot of changes to our diet.  


Answers to common questions:

• Milk Protein Intolerance (casein, whey) is not the same as a milk sugar intolerance (lactose).  Max cannot take the little pills or drink Lactaid.
• I do not know if Max will ever grow out of it.  While I want him to be able to make his own food choices, I don't see it as a huge hindrance and it doesn't bother me anymore that he can't have dairy products.  He doesn't seem to be bothered by it either.
• We use a variety of milks as a substitute to dairy milk in baking, on cereal, and just to drink.  There are a lot of options available just recently like coconut milk (Max's favorite...not the canned stuff...but in an actual milk carton), and almond milk.  We are trying to limit soy now that the other ones are so widely available.
• MPI is most likely genetic and is not an allergy.  It will not show up on an allergy test.

Symptoms:

• aggression
• irritability
• eczema
• contact rash
• cramps
• bloody stools
• night terrors
• insomnia

Now that Max is almost 5, I think we have it figured out.  It has definitely taken those full 5 years to figure out, though.  Starting last February, when we became more strict about eliminating the foods with the smallest percentages of milk, and settled into our new home, Max started sleeping through the night!  Can you believe it took 5 years?!?!  It was definitely a relief to know that it was medically related and not a parenting mistake I made...because I do like my babies to sleep in my bed.  :)