Our Breastfeeding Journey… with Allergies

It is the end of breastfeeding week and I really wanted to share our story on breastfeeding as it may not be one that many of you have heard or know about. Some talk about breastfeeding like it was so simple and easy. Others talk about their struggles with it; poor latch, tongue or lip ties, mastitis, bleeding, poor supply, pain etc. I knew all of this going in.

When our daughter was born in October everything was going perfectly. She latched well, she had no problems breastfeeding, I loved every second of it. Everyone talks about that feeling, of just absolute love, knowing your body is making everything necessary for you child. It’s incredible.

All that changed when V was 3 months old. She had started having blood in her stool. Now what does that have to do with breastfeeding many may ask? Absolutely everything. I started to get concerned, as any parent would be.

We went to the family doctor and she sent in a referral to see a pediatrician. Funny thing about pediatricians, they are considered specialists, so even though we had one for a different reason for V, we were required to get another referral to have our daughter seen for this new reason, which is absolutely ridiculous and a waste of time, especially since it is impossible to get in on short notice (less than at least a week). Anywho, family doctor raised some concerns that it might be serious and if she starts to have excruciating pain we should go to emergency.

Later that day I started thinking back more on the last few weeks and realized that our happy, nothing bothers her, really never cries baby, had started waking up screaming and pulling up her legs for some reason after naps and several times throughout the day. I had just thought it was a faze, that she would grow out of it, but the doctor had me concerned, so I decided it was better to be safe.

An emergency visit later, where the doctor there was not breastfeeding knowledgeable at all, told me my child was completely fine and she seemed happy so what was the issue. Of course he didn’t seem to understand that something was wrong, my child wasn’t acting like herself. She was having bouts of pain 6+ times a day where she was screaming, inconsolable. He just told me babies do that. She seems happy. Go home.

I was not happy with that and demanded to see a pediatrician ASAP. Thank goodness he listened to that and we got to go in to see this new pediatrician in the morning.

V had always been a spitty baby, always puking her food up (I changed her 5+ times a day…), always having 7+ burps a feed. She went from sleeping through the night to waking up every couple hours screaming in pain. She would wake up from naps screaming, she would scream randomly throughout the day. For anyone that knew her, this wasn’t normal. She never cried normally. She had mucousy, green looking stool with black specks or bright red blood in it, and it smelled off. Sorry, but it’s true. I just didn’t realize that all of this was linked.

We found out I wasn’t crazy, I wasn’t imagining things. Our daughter has what is called CMPA (Cow’s Milk Protein Allergy) as well as a soy allergy. It is an infant allergy that babies usually outgrow of by age of three.

I was a little confused though. I am already allergic to dairy. So one, babies can have issues with breastmilk? And two, how is she reacting to something that I don’t even eat, or at the most maybe have something that says “may contain milk”.

Apparently it is entirely possible. Any allergen can pass through breastmilk into baby. We got this huge list of ingredients to look out for and I purged our kitchen. I gave so much food away to family and friends, I honestly had no idea I had so much that contained soy ingredients! I felt discouraged, but we were figuring it out.

Those first couple weeks were so hard. I continued breastfeeding knowing that it takes a while for the allergens to leave my milk, knowing I was causing my daughter pain. She would just scream and pull away and was completely inconsolable. All I could do was rock her and repeatedly say “I’m so sorry baby girl, Momma’s trying to help. I’m so sorry.” I bawled. A lot.

I had so much guilt. So much anguish. I wondered if I should give up breastfeeding. if I should switch to formula. But I knew there was no guarantee that the formula wouldn’t bother her either.

I think one of the hardest parts was that it takes so long for the allergens to leave your body. When you first eliminate something, say dairy, it can take 2 to 3 weeks for it to be out of your body completely. So when you are breast feeding, you also have to add in that time to baby. 4 to 6 weeks to know if your diet is working, to know if you are making a difference or continuing to harm your child.

Suffice to say, I spent weeks bawling, hoping I was doing enough, kicking myself if I made a mistake. When it is just your allergies, who cares if you have a reaction when you knowingly put yourself at risk. That is your choice. My daughter didn’t chose to react. She didn’t chose to eat something just because she really wanted it, knowing she would have a reaction. I was making that choice for her. And because of this, I knew I had to make better decisions. I couldn’t knowingly hurt her.

After a while we also figured out she was allergic to corn and egg too. I had thought the soy allergy was difficult. I was wrong. Corn is in everything and part of everything.

Now, this is not everyone’s breastfeeding journey. I had it so easy at the beginning, I had an oversupply, a baby that nursed every 4 hours from the time she was born, sleeping through night from 1 month on, a dream baby. And then that changed. She started recognizing that she hurt after eating, so for several weeks she started refusing to nurse, screaming at me, crying, There were tears everywhere. I seriously questioned if I was a good mom. I must have been a monster, I was hurting my child, forcing her to nurse, making her hurt. It was pure torture.

After we got a new normal, knew what we could eat in the house, what was safe, what wasn’t, then shopping became one of my dreaded tasks. I used to love grocery shopping, what changed? I would read everything I put into the shopping cart, or really, read everything and then put it back on the shelf. There was so little I could eat. I felt like I was eating the same things, couldn’t eat out, I seriously for a time hated food. Then we got a handle on that and now I just deal with the cravings. Cravings for things I can’t eat. Popcorn, icing, the ease of ordering take out.

So, would I do it all over again? One thousand times yes. We are at 9 months going strong and I don’t know when we will stop. I love breastfeeding again. I love knowing that everything I am putting into my body is for my daughter, to keep her safe and healthy. I cherish our times together and dread being finished. Do I look forwards to the day I can have popcorn again, YES! But I can live without it, and if any of our future kids have similar problems I will go through it again, gladly, for them.

Breastfeeding isn’t easy, it isn’t simple, there is so much involved, so much commitment. But it is one of the most rewarding things that you can do.

For those that can’t breastfeed and wished they could, I completely understand. I grieved when I thought I might have to give it up. It is so important to do what is necessary for your child. For us, there wasn’t a formula that would have even worked for V, so I am happy that I was able to make the changes necessary to keep her safe and fed and healthy.

I hope that I have perhaps educated you a little, helped some moms not feel alone in such a difficult trying journey. This isn’t a breastfeeding topic that is commonly shared or known about, but it is becoming more a more prevalent. Let’s talk about our journeys. Let’s share about our parenting struggles. No judgement, no condemnation or accusations. Let’s just support each other, knowing we are all doing our best for our children.

Anyone else had a similar journey? Please share, I’d love to hear from you.

Weddings & Maple Baked Beans

The best part of weddings is the free food. Except for families with allergies.

My brother had his wedding reception this past weekend and they ended up having a potluck dinner, which made it easier to ensure there was food we could eat as we just brought our own, but there are always risks with food around others when you have allergies.

It has become second nature to always bring food to events that we can eat, because if I can’t eat, I will get hangry, which is not what anyone wants.

We made my family’s maple baked beans recipe which we almost ran out of (we made 70 servings). It is so good, and easy to make allergy friendly, especially if you have made my ketchup recipe.

Maple Baked Beans

  • Servings: 10-12
  • Difficulty: easy
  • Print

Ingredients

1 lb dry navy beans *
4 quarts water, divided
6 slices bacon, cut up
1 medium onion, chopped
1 cup maple syrup
1/2 cup ketchup
1/4 cup barbeque sauce (I used my ketchup)
5 tsp apple cider vinegar
1 tsp prepared mustard**
1 tsp salt
1/2 tsp ground pepper

Directions

  1. Rinse beans and put in large pot with 2 quarts of water
  2. Bring to a boil, reduce and simmer for 2 min. Remove from heat, cover and let stand for 1 hour
  3. Drain and rinse, put back in pot and cover with remaining water.
  4. Boil, reduce heat and simmer for 40 min or until almost tender.
  5. Drain and reserve water.
  6. For oven: Place beans in casserole dish and add all remaining ingredients. Bake, covered, at 300 degrees F for 2.5 hrs or until tender, stirring occasionally and adding reserved bean liquid as needed. For Crock-Pot: Place beans in Crock-Pot, add remaining ingredients and cook on low for 8 hrs

*I use a mix of black eyed peas, navy beans, black beans, and kidney beans

**If corn free, make sure your mustard doesn’t use white vinegar. The one I use has apple cider vinegar

So what makes weddings difficult for this with allergies? What’s the big deal?

First, who is making the food?

a) Is it a potluck, where everyone brings their own food; usually people have no concept of cross contamination or even fully understanding what is in their dish. Never ever trust someone’s word that it is free of certain ingredients. Do you know how many times I have had kitchen staff in restaurants try to convince me that butter isn’t dairy? Too many to count. No one knows your allergies like you do.

b) Is it a catered meal? If so, don’t just ask for what is (dairy, soy gluten etc.) free, because they don’t always make everything nor do they take additional training in understanding allergies. I always have to ask about each individual dish and it’s ingredients. Too many times do they forget that they put butter in the vegetables or milk in the mash potatoes until specifically asked about it.

Second, are your allergies anaphylactic?

What many people, even those with allergies, don’t understand is that any allergy can become anaphylactic at any time. Previous reactions are not indicative of what future allergic reactions will look like.

So if you are very concerned, or know for sure you have a serious allergy, check how they are preparing everything. Do they have your allergens anywhere near the food you are eating during prep in the back? Do they have a designated area they can prep your meals. Is there a way that they notify staff that your plate is separate or different (a coloured toothpick for example).

Third, how is the meal served?

a) Is it family style so you will serve your own food at your individual table? If that’s the case, make sure everyone at your table understands your allergies, that they can’t use anything other than the serving spoon in that specific dish, also ensure that said spoon doesn’t touch anything on their plate when they are serving yourself. Or maybe you need to go first and not have any seconds.

b) Is it buffet? Maybe you could check with staff and go through first, as everything will be cross contaminated by the time you go through the line. Or you could check with the servers about if they can dish you up a separate plate so you know that it is safe.

Lastly, do you trust people to wash their hands after they have eaten? Usually this isn’t a big deal for adults as those with allergies know to always wash their own hands prior to eating. This is a big deal if you have a toddler or newborn that still sucks on their hands. I have to watch to make sure people don’t touch my daughter V if they haven’t washed their hands, and kissing, even if it isn’t on the face, is forbidden unless you have washed your mouth.

Many may think this is ridiculous but we have had V break out in hives locally where J has kissed her after eating an allergen of hers.

Have you or any of your loved ones ever had difficulties at weddings or eating out? Please share! And if you have any new ideas or tips on what to look out for with food allergies, please comment.

All of this to say, we had such a great time at the wedding, but as an allergy mom I never truly relax.

A Start… of something

I once had a blog that I started when I was 18 to just have a place to keep track of recipes. I had several years before discovered I had allergies to gluten and dairy and I wanted a place to share. As is very common, I stopped after a year because life was busy, and no one really read it except for me.

So when some friends told me recently I should start my own blog, sell my own cookbook, actually sell my own flour mixes, my gut reaction was, NO, that’s a lot of work. You may be thinking, what changed my mind?

My daughter did. My daughter changed my mind completely. We have had many struggles, as any new parent has, however, our situation has been a bit more unique. We had a textbook perfect pregnancy, so when did things start to change? 2 days after our daughter was born we got sent to the NICU (a story for another time) and later got diagnosed with a congenital condition called Incontinentia Pigmenti.

Our journey didn’t just end there. At 3 weeks she started having some blood in her bowels, by 3 months it was concerning and the doctors finally diagnosed her with Cows Milk Protein Allergy (CMPA) and Soy protein allergy. Since then there have been additional allergies discovered including corn and egg.

So. Why a blog? I have always enjoyed making my own food, mostly because allergy friendly pre-made food is ridiculously expensive. Everyone keeps asking me for my recipes, how I make my food taste so good. I even had one friend tell me she doesn’t like desserts, but she will gladly eat anything I make. So I wanted to share with you what I do, the recipes I have, and the tricks I have learned.

It isn’t just this though. On this journey I have come to the realization that I have so much more to learn about allergies, and what better way to go about this than to share as I learn. I want our friends and family to understand the struggles of an allergen free home, of what to expect when we are out in public, and how to ensure that you and your kids are creating an environment safe for others with allergies.

Did you know that babies can react to allergens through their mothers breastmilk? I sure didn’t. Anything I eat that V (my daughter) is allergic to passes through my milk and she has a reaction. Usually little ones can’t have an anaphylactic response from this exposure, but it makes it no less serious.

Did you know that labeling on packages isn’t always accurate in the “allergen” section? For example, “caramel coloring or flavoring” usually contains dairy or wheat, but companies aren’t required to state that on the package. I learned this the hard way when balsamic vinegar in a greek salad that I was eating was causing V to be in excruciating pain for over a week, all because it had caramel coloring in the ingredients.

I wish that there weren’t others out there like our family, who have had to struggle with finding information on food allergies or other medical conditions. There are varying opinions, everyone’s situation is different, packaging and labeling is in no way accurate or always reliable. I often have to contact companies myself to discover whether their food is safe for our family.

It’s also not easy deciding as a family when someone is diagnosed with an allergy how far you take it. Do you eliminate those allergens from your home completely or do you try to create safe zones, and what that may look like for each family is different as well.

So, I invite you to journey with us, to learn as we learn, and to grow in ways you never expected. My life has changed dramatically since I became a mom and I wouldn’t change it for the world.

If you have any specific requests on what you want to learn, or specific recipes, feel free to contact me and I’ll see what I can do. I’m hoping that we can all come together and make the world a safer, more inclusive place for everyone, but especially for our little ones.