Daycare and Protein Intolerant Children perspectives and insights shared by Rhonda

I will never forget the day my husband came home from picking our son up at daycare.  He relayed the message from one of his part-time teachers: Sabastian must drink cow's milk and can not be allowed to have breastmilk as part of the transition from the infant room to the 1yr.old room.   She also gave my husband a copy of the menu and asked us to circle what foods he can have.  The menu didn't have any lists of ingredients and the snacks are mostly processed junk food.  As many of you know, even something as simple as canned pears or applesauce can contain corn derivitives; which is one of many foods that my son is intolerant to.  This was about two weeks before he was scheduled to make the transition.

Up to this point, I was very happy with daycare and didn't need to worry too much about the foods.  The infant room is much more controlled: the kids are put into individual seats so they can’t reach other kids, and the teachers would leave my son in his seat while they cleaned up any crumbs from the other kids.  I made and brought all my son’s food, which was pretty typical for all infants in the infant room, so I didn’t have to worry about him getting someone else’s food.  Also, there was no craft time in this room, so no food based art to worry about.

So, with this new change in feeding and food supplied, my husband and I were both extremely upset.  We didn’t really want to move our son to a different daycare, but were certainly willing to do so if it came to that.  Luckily, my son happened to have an appointment with his pediatrician a few days after this happened.  We explained the situation to her and she wrote a letter for the daycare explaining Sebastian’s diagnosis of MSPI, why he can’t simply be switched to cow’s milk and that breastmilk is a medical necessity for him.

I was so happy to have that ace in my pocket when we went into the meeting with the director.  I also put together a list of websites for the director and his teachers, which explain what MSPI is, feeding kids with MSPI, and sites with lists of the hidden milk, soy, and corn ingredients.

When we did have the meeting, the director and two of my son’s teachers were involved.  This daycare had only been open for two years, and while they had had other kids with MSPI, they had not had any others that were as intolerant as my son.  Some of the solutions that had worked for the other kids just weren’t a possibility for us.  We addressed their concerns and found solutions to their concerns.  For example, they were worried about how to heat up the breastmilk, since there was no microwave in the room.  This was a simple solution to us; just shake it well and serve it cold.

I especially loved bringing up the point, that if my son is up all night long having a reaction, they really don’t want me to be calling his teachers at 3:00 am to try to figure out what he might have been exposed to that day.  That definitely grabbed their attention!

The director agreed to allow my son to have his breastmilk and that we would continue making all of his food and bringing it to daycare.  I had given the pediatrician’s note to the daycare, but still feel that it should be my right to provide breastmilk and any food that I desire my son to have at daycare, regardless of medical necessity or just my own preference.

I have never asked the director for a lower rate, since my son does not consume the food, as I figured it does take some extra time for the teacher to nuke my son’s prepackaged meals.  I had offered to spend a few hours to come in and go through the ingredients of the foods, so we could identify any safe foods for my son.  The director instead offered to cut off the ingredient labels on their foods, so I could go through them on my own.

The only thing from the meeting that I was unhappy with, was that they wanted to delay my son’s moving up to the 1-year-old room for 2 months, to see how his IgE allergy tests go and in the hopes that he would be able to tolerate milk by the time he moved up.  My son was developementally ready to move and was getting bored in the infant room.  I still don’t think it was right to “punish” him for his food intolerances, but at least he was with the two full time teachers that I had been working with and felt comfortable with.

When Sebastian moved up to the next room, I made sure to again discuss the food intolerances and to provide a letter explaining the food intolerances and what response I want from them if he were to be exposed to some unsafe foods.  I also ask for at least a one-week notice if they are going to be doing any art projects with foods, so that I can make arrangements to have safe alternatives available for my son.

Another thing that I am working on is to creating a list of foods that I am confident are safe for my son and with enough detail so there can be no confusion (i.e. plain raw apples, plain raw grapes, etc.).

 In hindsight, I do wish that I would have been more detailed with his teachers on the accidental exposures and what action I would like from them.  I recently found out that he does occasionally grab some of the other kids’ food, but that he is really good about spitting it out.  So who knows how many trials may have been a fail due to an exposure at daycare that I never knew about.  His teachers mean well, they just didn’t “get it”.  They know that his IgE blood rast test came back negative for the Top 8 allergens and corn and that it is likely he will not have a life threatening anaphalactic type of reaction, which may have given them a false sense of security when it comes to accidental exposures.  I have since made sure to describe my son’s reactions to foods, so they realize that even though not life threatening, still very painful for my little guy.

It is frustrating, but we are getting through it despite a few set backs here and there.  I have since heard of other friends’ daycares that actually have a separate kitchen to prepare foods for allergic and intolerant kids.  That sounds like heaven to me, but if you don’t have that option, like us, I would just recommend giving the daycare a letter with very detailed instructions and descriptions of your little one’s intolerances and any actions that you would like taken.

Also, talk to your child’s teachers on a regular basis, as many things come up that you may not have known about.  I like to tell my son’s teachers when we are doing a new trial and ask them watch for any unusual behaviors from my son and let me know.  They don’t know all of the signs to watch for, like us parents do, but it is good to have some knowledge about what happened when they were away from us.  At this point, I am happy with our situation and where we are at.  I believe that having the open communication with his teachers and having them “on our side” has made everything go so much smoother.