Category: Parent Life

Mental health check-in

On By melkatborthwickIn Allergies, Medical, Parent Life4 Comments

It’s time to be real. I’ve been struggling the last little while. Struggling with being honest about how I am doing. Struggling with being real.

This part of my story is all related to breastfeeding and allergies and it goes back several years. I can only hope that by me sharing this I may help someone else, even just one person, to go and get support.

So to start we have to go back 27 months to when our oldest blessed our lives with her presence.

When our oldest, V, was born over 2 years ago we had some scares health wise (read all about it in The terrors of being a NICU parent) but our breastfeeding journey started out amazingly. Yes it took us a day and a very helpful nurse being a little forceful in helping V latch property. But she latched well, I got over the 3 week hump easily and I never had any cracks or bleeding or anything.

Fast forward to 3 months when we started realizing the V was reacting to something in my breastmilk. We knew something was wrong, green diapers with blood, abdominal pain, screaming uncontrollably, etc. This wasn’t my baby. I knew something was wrong.

I went to the ER because it takes 2 weeks to talk to our family doc. And he tried to gaslight me.

“Must be your cracked and bleeding nipples causing the blood.”

“um, I don’t have any cracks. She has a great latch”

“well then it must be from a milk clog”

“I pump once a day, if there was blood in my milk I’d see it”

“Well, she is happy so I wouldn’t worry about it”

What kind of response is that? How is someone being happy for a 5 minute period indicative of everything being ok health wise. I pushed to see a pediatrician and sure enough she had what is known as CMPA (cows milk protein allergy) and advised to cut out all dairy and soy from my diet, including derivatives. That list is like 40 ingredients!

I was prepared for the dairy, I already avoided most of it due to my own dairy allergy, but V reacted to things made in the same facility, so any cross contamination. I was also informed it would take 6 weeks for her to heal. The first few weeks I kept making mistakes, not reading a label twice, missing warnings on labels.

I bawled a lot. Mentally I struggled. I felt like it was my fault. I was failing her. I hurt my own baby. And it got worse from there.

I noticed after 4 weeks that she was getting better, but kept getting worse again repeatedly. Crazy enough we noticed a link after I ate popcorn. This opened our eyes and felt like we saw a light at the end of the tunnel. Little did we know how immersive corn is in our diets. I have had to completely overhaul our lives. I do a lot of food prep and honestly it is overwhelming, but something I was willing to do to keep my family safe and healthy.

One thing I wasn’t expecting was that I couldn’t keep any of the milk I had pumped while eating her allergens. I ended up donating my milk to a local mom in need of milk for her adopted baby whom she wasn’t able to relactate enough to fully feed herself. What an incredible feeling to know I could help someone else during our struggles! I think that first donation was just under 400 ounces of milk!

Things took a while to stabilize and from there we just struggled with adding foods to her diet directly. We ended up getting an allergist who diagnosed her with FPIES. Through all of this I continued to breastfeed her and we fell into a great rhythm.

Yes my diet was restricted because of her, but I knew I was doing everything I could for her. She was healthy and gaining weight. I always wanted her to wean when she was ready and after we found out we were pregnant I kept hoping she would want to wean. I wanted my body back, if even for a few months. But it wasn’t to be and I was ok with that.

Our beautiful Kae was born and she also latched well and didn’t have any nursing issues and man did I feel blessed.

And then after 3 days of V getting a bottle after Kae was born I nursed her. And I felt so beyond violated. I pushed through and helped her lay down for the night. I came out and almost curled up into a ball. I felt dirty. Violated. My skin was crawling. I didn’t know what had happened. I had never experienced that before and I was confused.

I tried to talk to J about it, but he was more confused than I was. “You just nursed her 3 days ago. Do you feel the same way with Kae?” I didn’t know what to say. I felt like I was betraying my daughter.

I had of course heard of breastfeeding aversion. Seen in mentioned in some mom groups. But usually only for people when they first started out nursing, not 2 years in. I felt like I could just plow through and it would go away.

Well over the course of the next 2.5 weeks I nursed her 8 times. And by the last time I actually had to fight the urge to throw her down on the bed and run from the room. My skin crawled. I felt resentment towards her. I dreaded bedtime. I couldn’t stomach looking at her. It just felt so horribly wrong.

To top it off I felt like I was abandoning her if I quit before she was ready to stop. Suffice to say there were many tears. I didn’t know what to do.

Finally a good friend said the words I needed to hear, “I think that switching to bottles is a really good alternative. She still gets mom milk and snuggles, but gets her mommy at the right mental space, which is so important. Your mental space is important, and you take on a lot. It’s okay to takes steps to be gentle with yourself ❤ you are a wonderful mommy.  You got through 25 months of breastfeeding before that happened. You crushed it.”

What an encouragement I needed to hear.  We made the transition and thankfully it went so smoothly. She only cried a couple times for me, for the most part she was totally fine with taking the bottle over nursing.

I thought our nursing troubles were behind us. I was so wrong.

Less than a week later I realized since I wasn’t nursing her anymore that meant I could eat the food she reacted to. She had gained a couple more allergies after we figured out the dairy, soy and corn. Long story short I hadn’t had eggs in 1.5 years. I ate 2 scrambled eggs and man were they delicious. My joy was short lived. 8 hours later Kae had the exact same symptoms that V got. She was in so much pain and I just knew that once again I had caused it.

What was so wrong with me wanting to eat food? Why were all my kids broken? Did I cause this? Did I somehow mess up and now they had allergies because of it? Why me?

I kept thinking, “Ok. It’s only eggs. No other symptoms. Everything else is fine. We are at baseline otherwise so I can not eat eggs. I can do this again.”

I thought I could hold it together. And then several weeks later she started to get worse. We noticed she reacted to peanuts, then pecans and cashews. Then fish and shellfish. I cut out the top 8 allergens (already gluten, dairy, soy and corn free from before). She was still reacting to something. Everytime I eliminated a suspect she got a little better. And then a day or two later she got worse after eating something else.

I didn’t know what else to do. I had been tracking literally everything that went into my mouth for a month and I couldn’t see a pattern. I tracked every possible symptom. I felt so lost. So I bit the bullet.

I started a TED (Total Elimination Diet). I still felt like I was in control. That I could do this. We would just cut down and figure out maybe one more trigger food and then I could add everything back in. This was 4 weeks ago.

I cut down to chicken, potato, apple, carrot, plum, salt, pepper and olive oil. And by that I mean literally only those whole foods. Nothing else. She got WAY WORSE. So looking at charts we cut chicken and swapped with beef, then cut potato. Slightly better. Then plum. Then raw carrot and apple. We had 4 days of everything looking like she was on the mend. Of looking like it was all worth it. And then the symptoms came back with a vengeance.

I did the only thing I could think of. I went to only beef and salt. For 3 days. I was desperate. She started getting better. We have had a few ups and downs since then, I am now eating beef, rutabaga, salt and coconut oil and I think we are almost at baseline.

Am I ok? Some days.

Am I broken? Every day.

Have I struggled. SO MUCH.

Do I feel like a failure? 100%

Do I feel like a crappy mom? I can’t hide from that feeling.

I cry every day. Multiple times a day. I have lost weight. I eat so much of those few foods in a day it’s disgusting. The amount of fat and oil I need to stop losing weight is obscene.

I feel fat, which obviously isn’t true.

I feel lost and alone.

I know I have friends, but no one else has struggled with this and it is so isolating. How do I talk to people about it without them saying I’ve sacrificed enough. I don’t want to give up. I want to keep going. In the long run this is good because we will find her safe foods. There isn’t even a guarantee that there is a safe formula, and if I lose my milk supply then I will have failed her.

So I keep going. I am struggling every day managing a baby who is obviously not feeling well and a 2 yr old who is craving attention and is incredibly jealous. I struggle with cooking 2+ meals for every meal. Of not being able to taste anything but the most basic foods. I struggle with trying to be happy in the face of depression, something I’ve never dealt with before. I struggle to feel God in these moments, to know he is walking beside me. I struggle because COVID-19 has secluded us from everyone and everything. I struggle because most days I just need a hug from a friend and a phone call just isn’t enough. I am also struggling to admit that it’s ok to struggle. It’s ok to not be ok. It’s ok.

I feel some days like I’m a piece of paper tacked by a nail to a post. Storms keep coming. The rain and wind have shredded me to pieces. I am barely hanging on to that nail. The words on the paper are my identity and the rain has washed away almost all of it. Pieces are missing. But I can’t let go, I have to hold it together for my family.

So where do I go from here? This looks so different for everyone. I guess that’s what this post is about. Everyone’s mothering journey is different. Everyone’s feeding journey is different. Some struggle with post partum depression or anxiety and others don’t ever have to worry about that. Some struggle raising one child. Others struggle raising two or more. Some want a huge family, some want only one child.

It’s time to be honest with yourself. Honest with your friends. Honest with your family. Talk about how you are doing. The good stuff and the bad. Don’t let your fears of them not understanding hold you back. You can’t get help if you don’t ask. You won’t find someone to share your burdens with if you never open up. You won’t find peace in Him if you never give your everything to Him. And for some you may never get the relief you need mentally without assistance from a medication.

So this is me being true to myself. This is me opening up. I’d love to hear about your journeys. I’d love to be a friend, to listen and be there for you. It’s time to be real.

Much love,

From a struggling mom

World Rare Disease Day

On By melkatborthwickIn Allergies, Incontinentia Pigmenti, Medical, Parent LifeLeave a comment

It’s World Rare Disease Day on the last day of February every year. Before I had kids I not only didn’t know anyone with a rare disease, I didn’t even realize there was a day to try to bring these diseases and the research needed into focus.

Did you know that there are over 400 million people affected by rare diseases worldwide?

Our toddler V has several rare diseases, Incontinentia Pigmenti (IP), Food Protein-Induced Enterocolitis Syndrome (FPIES) and Food Protein-Induced Allergic Proctocolitis (FPIAP). Our newborn K has been showing the exact same signs that V did at her age in regards to FPIES and FPIAP, reacting to different foods through my milk.

Due to this, I want to talk a little about FPIES today and this it is not only impactful for the child, but also on the family. Food Allergy Canada has a great post up about FPIES. It is inflammation involving both the small and large intestine with symptoms including vomiting and diarrhea with a late onset of 2+ hours after ingestion.  “FPIES symptoms can be very serious and can include turning grey or blue, dehydration, and even going into shock. Call 9-1-1 if a child is experiencing these or other serious symptoms, as immediate medical care is necessary. In cases of shock, epinephrine is sometimes used.”

“Other emergency FPIES treatments include steroid treatments and IV rehydration. Children may also have growth issues as a result of untreated FPIES, which must be addressed and monitored by health care providers.”

Skin testing or blood testing does not identify FPIES either, which means it is all trial and error. This can cause a lot of anxiety around introducing new foods. I have seen some kids have food aversions and needing to be in eating therapy just to learn to eat and not be terrified of eating.

Community FPIES Focus is an article posted with a great breakdown on FPIES.

There was a recent poll asked in a support group I’m a part of, “Tell me you’re an FPIES parent without taking me you’re an FPIES parent.” This post has had over 400 heartbreaking comments about how this non-IgE allergy is traumatizing, heartbreaking and so incredibly difficult for everyone involved. I’d like to share a few of the comments. Warning, bodily functions mentioned.

“When we would eat out, most of the family was bunched to one end of the table, with a huge clear & cleaned off area for our FPIES boy, so that he couldn’t accidentally touch anything but the safe food we brought along for him.”

“”Does your tummy hurt?” Everytime she says she doesn’t feel good or starts acting irratic.”

“I get gut wrenching anxiety when my son burps”

“Call about ingredients. Oh, that’s proprietary info”

“What are the ingredients of the ingredients?”

“Cheerios on the floor at the playground- Aaahhh!!! (Cue panic attack)”

“When they throw up and you pray it’s just a stomach bug”

“Constantly telling people “please don’t feed my son” “

“It’s easier to tell you what he CAN eat. The no list is 3 pages long”

“Mommy, when can I have yoghurt like my friends?”

“Overnight bags in trunk with a single blow up mattress. Family sends labels of any food they are buying. So many hospital appointments. Weekly weigh ins for a year. TED diets, swaddle cloths all over the house throughout infancy”

“I make the same dinner with three different sets of ingredients in three separate pots each night.”

“I examine poop like it’s my job.”

“I just spent 4 hours meal prepping special foods for the week and labeling like crazy 😫 every time my kid coughs my heart stops waiting for an acute reaction. I have a hospital bag packed at all times “

“Reading and research every ingredient like a p.i. “

“I never leave the house without a bag of snacks “

“I have a stack of old towels in just about every corner of the house in case we have accidental exposure. “

“I’ve had to google the ingredients to our dog food.”

“My kids daycare sends me the food/celebration schedule a month in advance and we chat that day to discuss what alternatives I can send in so my kids aren’t left out “

“I cried the first time we all ate the same dinner”

“My daughter never had a piece if her first birthday cake !!”

“I have to make everything from scratch and always bring food wherever we go!!”

“My daughter was a very sick baby/ toddler, we thought we were going to lose her 😭”

“My son is 3.5 and has 12 foods. “

“Takes me double the time grocery shopping trying to read every ingredient to try and find new foods for my child to eat “

“I buy 50 million of the same item weekly “

“My grocery bill is 3 times higher than it should be having to buy all these expensive ass foods for my kiddos.”

“Whenever we go out to eat as a family, I always have to pack lunch for my FPIES toddler because ordering food for him is just too risky. Better to be safe than sorry 🤷🏻‍♀️”

“I hate how food centered holidays and social events are. “

“When things were bad…. we made my son around 10 meals a day…. and celebrated when he ate 1 of them.
#foodaversion”

“It’s like being allergic but a different kind of allergy 🤔 lol “

“Babe! Did you check the label!?!?”

“Sorry we can’t eat out at that restaurant ,they don’t offer any of his safe foods there”

“Make everything she eats by hand (no store bought snacks). Also waaaaay too invested in her poops”

“Did you take a pic of the poop?”

“I legit can’t let my husband feed the kids without pre-planning everything
“Send me a picture of the ingredients”
“….it was blurry try again” 🙄”

“At a restaurant…. “STOP TOUCHING THE TABLE WITH YOUR FOOD!” “Don’t touch the wall.” “Let me wipe the table again.” “Let’s wipe your hands again” “Here, eat your home packed meal.” “This is so fun…” 🤦🏼‍♀️😣”

“My daughter has never eaten take out or at a restaurant “

“We’ve got about 4 hours until he starts puking.”

“My sons tummy is distended and he is laying on the floor just sad in anticipation of the pukes (he is seasoned and gets his own bowl) little champ
(… a typical scenario when he has been fed at daycare or by someone who claims it’s trigger free)”

“Them: “relax.. it’s fine! Stop hovering. He’s a kid”
Me: “oh I’m sorry, have you seen a child vomit to the point of shock and pass out? No?””

“I just went on vacation and cooked every single meal, including preparing enough stuff for the 2 day drive”

“I didn’t have to cook tonight!” = “I only had to cook for my FPIES kid tonight!”

“Slimy yellow blowout to the shoulders, in the hair after I just got the car seat washed & back together yesterday 😩”

“Hi! Thank you for inviting my son to your sons birthday party! I know you don’t know me, but can I ask specifically what you will be having at the party, down to the decorations on the cake/cupcakes so I can make/bring my own version for my son?” 😂

“Did you finish eating? Wash your hands please, before you touch your sister!”

“I made my child’s first birthday cake out of boxes because she only had formula as a safe. “

“Vomit PTSD: it’s a thing “

“You breastfed until 3!?”
“Yep. It was the only thing she wasn’t allergic to..”

“You have the pharmacist print out the ingredients before taking medicine for yourself because you are breastfeeding and have to explain that “Yes, medical grade lactose is definitely a problem ingredient no matter how small and broken down you think it is.””

“Hi babysitter (aka trusted family member if you have one). Here is my daughter’s 36 page care plan. Don’t feed anything I haven’t set aside for her. Wash your hands extensively. And I may question you extensively about what her poo looks like. Actually, can you take pictures? “

“”no corn listed in the ingredients” does NOT mean there is no corn in a product. “

“H1/H2 blockers, vinegar poop, acid rash, baking soda bath, terrible sleep, reflux, delayed vomit, only a handful of safes.”

“The ER doctors said “oh are you a first time Mom?” After implying I shouldn’t have brought my baby in for a stomach bug 🤬”

“Don’t let her eat that piece of paper, some ink has soy derivative”

“Checks ingredient list on food items we buy EVERY WEEK, because you never know if they are going to change “

“I’m on a TED (Total Elimination Diet), going down to only several individual ingredients because my baby reacts to the food I eat and she is only a couple months old and fails everything I trial”

This is a small portion of the many heartbreaking comments. I have seen parents scared to have another kid for fear of the same issue or worse.

I made a post last year that goes more in depth on rare disease in general. Check it out here.

I want to close the same way I did last year. I encourage you all to read up about a loved ones disease, rare or not, and know how you can support them. Whether they are in need of financial support for programs, help with just staying on top of their house (due to an even busier schedule than most) or even just taking them out for coffee and listening. Trust me, when loved ones research and are able to participate in a conversation about the condition, bring forward suggestions or ideas and overall just are there, it means a lot!

References

Rarediseaseday.org

https://rarediseases.org/rare-diseases/incontinentia-pigmenti/

https://rarediseases.org/rare-diseases/food-protein-induced-enterocolitis-syndrome/

https://foodallergycanada.ca/food-allergy-basics/food-allergies-101/what-are-food-allergies/food-protein-induced-enterocolitis-syndrome-fpies/?gclid=CjwKCAiAm-2BBhANEiwAe7eyFPrYlFDC8ZAy16jHqPqzEj90PCwLPDj1UgKkxwfzT8PsctszeCcA5RoCPecQAvD_BwE

https://foodallergycanada.ca/community-fpies-focus/

Chicken Nuggets

On By melkatborthwickIn Allergies, Parent Life, RecipesLeave a comment

Chicken nuggets are one of those easy meals that are so nice to have in the freezer, ready for a simple fries night or a quick lunch. Life with kids makes simple easy meals a necessity. For those with little ones with allergies you know how difficult it is to find safe meals like this.

I was desperate for easy finger food to add to fries night which we often have twice a month, and everything I made V didn’t like. Breaded chicken tenders were a huge no from her. I tried several chicken nugget styles and recipes. Baked just wasn’t working either, no one liked them. And then I found this recipe. I have made it from straight ground chicken, but you can start with the chicken breasts as well.

Chicken Nuggets

  • Servings: 42 nuggets
  • Print

An easy alternative to the chicken nuggets you find in the store, but you actually know exactly what is in them.

Ingredients
18 oz boneless skinless chicken breast/ground chicken (1)
1 1/2 tsp salt (2)
3/4 tsp parsley flakes (3)
3/4 tsp oregano
1/4 tsp onion powder, heaping
1/4 tsp pepper, heaping
3 large eggs, beaten/flax eggs (allow to set for 5 min) (4)
1 1/2 C flour/gluten free flour (I use white rice flour)
1 1/2 tsp salt (2)
2 C deep frying oil (canola oil, sunflower oil, peanut oil etc.) (5)

Directions

  1. Whisk eggs together in a small bowl. Make flax eggs, if using. Allow to set for 5 min. I found the flax egg mixture was slightly too thick, add more water if needed.
  2. Combine flour and salt and put in a shallow bowl.
  3. Heat oil in a heavy-duty skillet or saucepan on medium-high heat. Set a candy thermometer in place. Keep an eye on the temperature to avoid burning your oil.
  4. While oil is heating, cut chicken breast into cubes and whir in a food processor until a fine paste, or use ground chicken. Combine chicken with salt, parsley, oregano, onion powder and pepper in a medium size bowl.
  5. Make 42 balls with the chicken mixture, about 1 Tbsp per.
  6. Roll ball in flour, then coat in egg, then recoat in flour. Use your fingers to press ball down to flatten into a nugget.
  7. Once oil is 350-365 degrees place as many nuggets into the oil as possible, frying until golden brown. Depending on depth of oil, you may need to turn halfway through. Takes approximately 7 min to fry. Use a digital meat thermometer if desired to confirm chicken is cooked fully (165 degrees).
  8. Remove and place on a towel lined plate or pan. Enjoy!
  9. Keeps in sealed container in the fridge for several days. Freezes well for easy leftovers. Reheat in the oven or microwave.

Notes:
(1) Chicken: Corn Allergy – The carcass may be sprayed with citric acid or some other anti-bacterial. The poultry may be packaged on a Styrofoam tray containing a citric acid-saturated soaker pad underneath the poultry, and then wrapped with shrinkwrap or plastic wrap. A whole chicken or turkey is usually wrapped in plastic. The inside of the packaging may contain cornstarch, to keep the poultry from sticking to the packaging. More on corn free meat processing. In addition they are typically fed corn as part of their diet.
(2) Salt: Corn Allergy – Many that are allergic to corn are sensitive to iodized salt as corn is used in the processing. Sea salt is better, but some are still quite sensitive and require brand specific salt.
(3) Spices: Corn Allergy – Dried spices can be treated with a corny preservative. Penzey’s and Frontier single ingredient spices are well tolerated.
(4) Egg/Egg replacer: Corn allergy – Eggs are washed with a commercial cleaner that is full of corn products. The egg shells are porous and absorb the cleaner, so many with corn allergies have issues with eggs. Less common is to have issues with eggs due to what the chickens are eating. I have found that many of the egg replacers out there use corn starch, so beware which one you buy. Bob’s Red Mill works as a great replacer, however it has a lot of cross contamination and isn’t recommended at all with corn allergies. You could also use a flax egg as an alternative.
(5) Vegetable oil: Corn Allergy – Don’t use “vegetable oil” as it can be corn or soy oil. Canola oil is one of the worst oils for cross contamination with corn. Olive oil isn’t always 100% olive oil either, so if you are sensitive, be careful. If bottled in plastic, the bottles can be corn-derived. The oils can be rendered corny during refining. Need to determine what is used during the extraction process (alcohol or other medium?), and if any defoaming agents are used. Citric acid can be used as a degummer as well in safflower, sunflower, canola (rapeseed), soy, and flax oil.

Gluten Free Frosted Sugar Cookies

On By melkatborthwickIn Allergies, Parent Life, RecipesLeave a comment

Somehow, even though we had no company or travel, we were more busy than ever coming up to Christmas this year. This might have to do with a newborn in the house… This meant I didn’t get to Christmas baking before Christmas day. Instead, V and I made cookies on Boxing day, by that I mean I made the cookies, she helped pour some ingredients into the bowl and she selected the cookie cutters. Strangely our toddler didn’t want to cut the cookies out herself.

This cookie recipe I used to make years ago with the shortening that the recipe calls for. Since at this moment in time we don’t have a safe shortening I decided to tweak the recipe, and they turned out fantastic. So great, that I made a second batch yesterday because we ate all of them already.

You will notice one photo has decorated cookies while the rest are just white icing. The decorated cookies were from before our corn allergy diagnosis. I didn’t bother trying to add some natural food coloring to my icing this time around, however there are many ways to do this safely for different allergies. I may have to experiment.

Gluten Free Frosted Sugar Cookies

  • Servings: 2 dozen cookies
  • Print

This easy and delicious recipe is great for the holidays, birthdays or just any ordinary day. Enjoy!

Ingredients
For the Cookies:
1 C shortening/vegan butter (I use miyokos butter) (1)
1 C granulated cane sugar
1 large egg, cold/flax egg (allow to thicken for 5 min) (2)
1 Tbsp vanilla extract (3)
3 C Gluten Free All Purpose Flour Mix
1 tsp sea salt (4)
Tapioca starch for rolling out the dough

For the Frosting:
1/2 C vegan butter (1)
1/2 C shortening/vegan butter (1)
3 C icing sugar (5)
1 tsp vanilla extract (3)
1 Tbsp unsweetened coconut milk beverage
food coloring (optional) (6)
sprinkles (optional) (7)

Directions:
To make the Cookies:

  1. Preheat oven to 350 degrees, line baking sheets with silicone mats or parchment paper
  2. In the bowl of a stand mixer cream together the shortening/vegan butter and sugar until light & creamy (approximately 2 minutes). Mix in the egg & vanilla extract.
  3. Add the flour and salt, mix low speed until completely incorporated. The dough should be slightly firm but still pliable, not sticky.
  4. Separate into 2 balls. Flour working surface with tapioca starch. Roll out half the dough on floured surface. Cover with plastic wrap and roll out until it’s about 1/4 inch thick or less. Using desired shapes/cookie cutters, cut out cookies. Transfer carefully to cookie sheets, repeat with remaining dough. Dough scraps can be re-rolled. Use additional flour only as needed.
  5. If using vegan butter, refrigerate for 5 minutes before baking. Bake 8-14 minutes (all depends on size of cookie cutters & thickness of dough). Cool cookies on the baking sheet for a few minutes before cooling completely on a wire rack. Cool completely before frosting.

To make the Frosting:

  1. Mix the shortening, vegan butter & powdered sugar in the bowl of a stand mixer on low speed until the sugar is incorporated.
  2. Beat on medium-high for 1 minute.
  3. Mix in vanilla and milk until the frosting is light & fluffy, about 1 minute or less.
  4. Incorporate food coloring (optional)
  5. Frost the cookies, top with sprinkles (optional). Serve immediately or store in an airtight container until ready to serve

Notes:

(1) If using shortening in the dough it doesn’t need to be refrigerated, however if using vegan butter it bakes much better if chilled.
(2) Egg Replacer: Corn allergy – I have found that many of the egg replacers out there use corn starch, so beware which one you buy. Bob’s Red Mill works as a great replacer, however it has a lot of cross contamination and isn’t recommended at all with corn allergies. You could also use a flax egg as an alternative.
(3) Vanilla: Corn Allergy – Vanilla is made with alcohol, often corn, you may need to make your own
(4) Salt: Corn Allergy – Many that are allergic to corn are sensitive to iodized salt as corn is used in the processing. Sea salt is better, but some are still quite sensitive.
(5) Powdered sugar: Corn Allergy – Powdered sugar/icing sugar contains cornstarch to prevent clumping. Wholesome Organic Icing Sugar uses tapioca starch instead. This is an ok option for corn lite, but trial carefully as there is a lot of cross contamination. It is possible to make your own. This is what we do, it is just time consuming.
(6) Food coloring: Corn Allergy – coloring often in an alcohol base, usually corn. One can use natural coloring if desired. Beet root powder, matcha tea powder, etc.
(7) Sprinkles: Corn Allergy – made with corn starch and corn syrup, avoid if needed

Rare Disease Day

On By melkatborthwickIn Allergies, Incontinentia Pigmenti, Parent Life1 Comment

The last day in February is Rare Disease Day, a day to bring awareness to the general public about rare diseases affecting many people’s lives. What I didn’t know until we had V and researched Rare Disease Day, is that 1/20 people will live with a rare disease at some point in their life.

Despite how many are affected, most of these diseases actually have a small group affecting each specific disease, having no cure and most of the time actually go undiagnosed. We celebrate rare disease day on the last day in February, a month with a rare number of days.

So what is a rare disease?

“There are over 300 million people living with one or more of over 6,000 identified rare diseases around the world, each supported by family, friends and a team of carers that make up the rare disease community.
Each rare disease may only affect a handful of people, scattered around the world, but taken together the number of people directly affected is equivalent to the population of the world’s third largest country.
Rare diseases currently affect 3.5% – 5.9% of the worldwide population.
70% of those genetic rare diseases start in childhood.
72% of rare diseases are genetic whilst others are the result of infections (bacterial or viral), allergies and environmental causes, or are degenerative and proliferative.” (1)

What are the challenges with a rare disease?

Due to such a lack in scientific knowledge and quality information of each disease there are often delays in getting a correct diagnosis. The lack of information also delays appropriate interventions and treatment, causing additional burdens on those affected.
Due to the rarity and diversity within each disease, it is so important for research done to be international so that all researchers, experts and clinicians are connected and able to collaborate more effectively and efficiently. There are several initiatives, including the International Rare Disease Consortium, the European Reference Network, Care 4 Rare (this is a Canadian run program), and EU Framework Programme for Research and Innovation Horizon 2020, that support international, collaborative work.

How will Rare Disease Day help make a difference?

Rare disease day helps to bring awareness to the 300 million people living with a rare disease around the world, and other loved ones affected as well.

“The long-term cause of the Rare Disease Day campaign is to achieve equitable access to diagnosis, treatment, health and social care and social opportunity for people affected by a rare disease.”(1)

At the start of Rare Disease Day in 2008, 18 countries held events, and in 2019 over 100 countries brought awareness to rare diseases by holding events. This is exciting progress.

So how does this affect our family?

As mentioned in a previous post The terrors of being a NICU parent, our daughter was diagnosed with Incontinentia Pigmenti, a rare congenital condition that affects her X chromosomes. This in turn affects her skin, hair, teeth, microvasculature (including her eyes), and central nervous system.
What I haven’t mentioned is that only 1200 people with this condition have been reported in scientific literature. Current prevalence being 0.6-2.1/1,000,000 persons, which is a 0.00006%-0.00021% of the population on earth. (2)

At 6 months of age V was also diagnosed with a rare allergy condition called FPIES (food protein induced enterocolitis syndrome). It is a non-IgE allergy affecting her gastrointestinal system. It causes vomiting to the risk of hypovolemic shock, abdominal pain, and bleeding with diarrhea. Most outgrow this condition by the age of 3, however a small number live with this allergy for life.
From numbers I could find, FPIES is estimated to affect 0.28% of children in the United States currently. Due to frequent misdiagnosis this number is likely low. (3)

Living with a Rare Disease

Living with a rare disease has so many complicated facets. Not only is there little information out there, many doctors don’t know or understand the condition. I go to our family doctor and tell her what I want/need, not the other way around. She actually told me the last time I was in that I am the expert, not her. What is scary about this, is what if a doctor doesn’t agree with what my daughter needs? What if we go to the emergency room needing specific care and they don’t agree with what she needs and ignore our concerns? Things can go from scary to downright dangerous.

Support groups are our life. I have so many support groups, yes on facebook, but they have made our life so much simpler and safer. There is so much information each of us as parents have researched and discovered, so why not share? Obviously it is important to trust your source and do research as necessary to confirm what was stated or suggested, but I have learned so much about new updated protocols to follow, food suggestions and tips on dealing with IP and FPIES in the hospital setting. Due to all of this advice, we were safely able to navigate surgery for V this past January, you can read about it here.
These support groups also are so important for ones mental health. It is easier to shelter yourself and your child when someone in your family is affected by a rare disease or allergy. It is easy to just stay home than to go out, risking your child, worrying about an innumerable amount of risks, trying to explain yourself and your child numerous times. It is so much simpler to shelter oneself. I have found support, people I can vent to, people that understand. It also makes it easier to go out because of advice given.

For many with a rare disease, or really any disease, life is more expensive. We celebrate daily that we live in Canada, where most of our medical expenses are covered by the health care system. Unfortunately this isn’t the case for many across the world. Sadly, our health care does not include FPIES or any allergies under a tax exemption for food expenses. Depending on severity of a condition, it can become very expensive to support the one in your life with said restriction. For us, corn is debilitating. Everything we eat needs to be locally sourced from specific farmers, with specific farming practices. This includes butchering practice and packaging of all food products. Suffice to say, it puts a strain on ones budget.

There are of course the struggles if ones family is not supportive and you have not only no help, but judgement too. Judgement as to treatment options, lifestyle changes, things they can do to help etc.

For many with a rare disease they are undergoing medical treatment that is new, joining medical trials, trying medication after medication. There is often no end to the disease and the start of ones day. So how do you live with a disease and not let it define your life? For everyone that looks so different.

For our family, it means trying to make meals as normal as possible, even if our ingredients are limited. It also means scheduling doctor appointments around our life, rather life around the doctor appointments. We bring food with us to go out instead of just staying home as we can’t eat out. Some struggles we haven’t come across yet, like how we will approach dangerous sports (increased risk for retinal detachment) or for V later in making decisions about having a family (as IP is hereditary and often causes miscarriages).

I encourage you all to read up about a loved ones disease, rare or not, and know how you can support them. Whether they are in need of financial support for programs, help with just staying on top of their house (due to an even busier schedule than most) or even just taking them out for coffee and listening. Trust me, when loved ones research and are able to participate in a conversation about the condition, bring forward suggestions or ideas and overall just are there, it means a lot!

References

(1) Rarediseaseday.org

(2) https://rarediseases.org/rare-diseases/incontinentia-pigmenti/

(3) https://rarediseases.org/rare-diseases/food-protein-induced-enterocolitis-syndrome/

How do you prepare for your child’s surgery?

On By melkatborthwickIn Allergies, Incontinentia Pigmenti, Medical, Parent Life1 Comment

I don’t know about you, but I am the type of person who needs to know the pros and cons, and all the potential side effects and worst case scenarios. It helps me to just feel prepared for anything.

This actually really seems to bother my husband sometimes as he feels I am dwelling on the worst case, fearing the worst for no reason. I don’t know how to fully explain it but for me, I’d rather be prepared for the worst and get to celebrate the best than be so unprepared that I didn’t see the situation coming.

So why am I sharing this? We drove this week to the BC Children’s Hospital to see several specialist involved in V’s care for her genetic condition. This involved meeting an ophthalmologist surgeon who performed surgery on Thursday. We also met with a neurologist to confirm sure isn’t having any neurological complications of her vision and had an EEG to confirm and a requisition for an MRI to get a baseline of her central nervous system.

We have 10 doctors who are involved in V’s medical care, most of which have been supportive and helpful. Most of our appointments have been the perfect example of a supportive medical team.

But that isn’t always the case. We are so blessed to have such an amazing team. This week, meeting the two new specialists, as well as everyone involved in her care in the hospital during her surgery, including anesthetists, medical residents, and nurses to name a few, was nerve wracking. What if they aren’t supportive in our struggle with her uncommon allergies, what if they won’t listen to our requests for specific meds, for the necessity in certain IV fluids, food etc.

For anyone that wants to know about corn allergies and what hospital treatment and care looks like check out the following links:

Emergency Room Protocol

Hospital and Medical Safety with Corn Allergy

ER Safety: Emergency Medical Treatment with a Corn Allergy

So how did we prepare for surgery for our little girl? For starters, we have a “care plan” for lack of a better word made up for her. This includes her daily routine (which is helpful if we have people watching her), emergency numbers, medical conditions, allergies, including her safe foods that she can eat and where we buy them, the emergency room protocol for corn allergies, what to do in case of an anaphylactic reaction or a FPIES reaction, and information on her genetic condition, IP.

We also brought copies of the protocol to give to the anaesthetist and doctors, including a list of safe and unsafe things for her. This included medications, IV fluids and other practices.

Obviously not everyone needs to have all of this if your kid doesn’t have allergies affected by hospital care. So what can everyone else do to prepare?

We always prepare before any appointments by writing down concerns we have, things we have questions about, and ask about potential complications with any procedure that needs to occur. We talk about in emergency situations what steps would be taken or how long a procedure would take and what recovery will look like.

Often times doctors have done a procedure so many times that they forget that us as parents or patients are worried or don’t fully understand exactly what they are going to do. Don’t be scared to stop them from leaving, ask more questions, ensure that you feel comfortable with everything that is going to happen.

One thing I haven’t mentioned yet is surgery start times and fasting. When your kid doesn’t understand why you aren’t giving them food when they keep asking for it, it is so difficult. Thank goodness V was able to be distracted by a walk, playing with toys in the waiting room, more walking, and watching a little TV. If that didn’t work, I don’t know how we would have made it so long. She was starved.

I always hoped and prayed that I wouldn’t have to experience the fear of walking away while my child was put to sleep with anaesthetic for a surgery. It is a scary thing. We talked about who would go in with V to hold her while they put the mask on and put her to sleep with the medication. That was a hard decision for me. Do I want to be there while she is terrified and then walk away with her unconcious?

So what do you do while you wait? Well I wanted to keep my mind busy, so we actually went and ate our packed lunch. We were a couple floors down and I knew they had our number. I needed to be distracted. Obviously not everyone can eat when their little one is in surgery, so what else can you do?

We packed a couple small card games to play and our books to read. And obviously we had our phones as well. V’s surgery was only 45 minutes, so we had no issue filling that time. Just do whatever you need to do. If you need to leave the ward or if you can’t leave just in case, those are both ok.

If you bawl your eyes out the whole time or never shed a tear, you are an amazing parent. It isn’t easy having your precious child in surgery, whether it is major surgery or something simple, it’s scary. Feel what you need to feel and don’t feel embarrassed.

Getting to see V after surgery was so heartening and heartbreaking. Be warned that it may take a while for them to feel ok, to settle in. It took V about 30 minutes to calm down and feel better. I’m going to be honest, I am so thankful we are still breastfeeding as it was such a simple, easy way to help her stay calm and feel safe.

So what am I trying to say with all of this? Maybe just that surgery is terrifying and it’s ok to be worried sick. Do your research, find all your answers before hand, and know that those doctors only want what is best for your little one.

When maternity leave ends

On By melkatborthwickIn Parent LifeLeave a comment

I’m laying here, trying to relax because I have to get up tomorrow before 5 am for my first work shift since my little girl was born.

I spent the evening panicking. The house is a disaster. I had no food in the fridge for supper let alone meals for tomorrow for me, hubby and little V, as well as grandparents who will be watching her.

I’m worried about all of her allergies, what if she has a reaction and I’m not there, what if , what if, what if. All I can do is give all the information to those watching her and pray that they will watch her like I do. I seriously don’t know how allergy mom’s cope.

I’m still a breastfeeding mom, so what will pumping look like, especially as a nurse. Will I find time to pump? Will my co-workers be ok with me leaving the floor to pump? Will V take to the bottle ok? Will I start to hate pumping and quit breastfeeding because of it?

So many thoughts and issues arise when returning to work, especially after being off for a year! I’m utterly terrified to start a new job with new co-workers especially since it has been over a year!

I don’t feel ready to return to work. Will I ever?

It’s so easy to wallow in the guilt of returning to work. Am I making the right decision? Should I just stay home forever? Will I negatively be affecting my children by working? I have absolutely loved being a stay at home mom for the past year. I feel so blessed to live in Canada where this is an option, to stay home for 12 – 18 months after having a newborn.

For moms putting their littles in daycare, I can’t even imagine. For someone you may not know well to watch your kids day in and day out, feeling like you don’t get to see all these new changes that are happening. Wow. You are so strong to do what you need for your family!

We are blessed with me being a nurse and being able to have the option of just working casually, so V going into daycare just didn’t make sense for our family. What that does mean though is worrying about who will watch V, whether grandparents can come, or if J will stay home from work that day and “work from home” (not sure how effective he will be lol).

I keep trying to remind myself that it is like any other day that her grandparents have watched her. Like any other day. Like any other day. It’s on repeat in my head but it doesn’t seem to be getting any easier.

I keep reminding myself she will be safe, she is loved, she won’t remember all these days I didn’t see her at all due to 12 hour shifts. I keep reminding myself that it’s ok to miss her little arms around me, or to look at photos during the day and want to bawl. I keep telling myself it’ll get easier as time goes on.

It is ok to work, it is ok to have a life apart from your kids. Healthy even. I have been dreading/dreaming of the day I get to return to work, and have a purpose other than keeping my child alive and loved.

Is it going to be difficult, heck yes. Is it ok to bawl and miss them, 100%. Is it ok to look forwards to leaving the house, for adult interaction, totally. Is it ok to blame yourself or doubt your love for your kids because you are a working mom, absolutely not.

Whatever you have to do for your family, whether that means working casually, part time, full time. Whether you have family watching your kids or they have a nanny or are in day care. Just know, you are doing what you need to, in the now, to raise and protect them. Just continue to show your children how much you love them, and enjoy every moment you have together as a family.

That is what I am trying to do, live in the now. Will I cry tomorrow, an absolute guarantee. Will it be hard to not see my precious daughter, totally. Does it suck being a pumping mom, totally! But we do what we gotta do.

Don’t let that mom guilt bring you down. Revel in the moment with your family ❤️ that’s what I am doing.

The terrors of being a NICU parent

On By melkatborthwickIn Incontinentia Pigmenti, Parent Life2 Comments

Every new parent’s nightmare is that something is wrong with their child. Of course for most people this fear never comes to pass and you get to take home a health little baby.

As most of you know, our daughter V has quite a bit going on medically, mostly due to a genetic condition she was born with called Incontinentia Pigmenti.

The month of October is Incontinentia Pigmenti awareness month and I would really like to share our story, however, I have to start at the beginning, which means sharing about being NICU parents.

After 10 days of prelabour, 12 hours of active labour, issues with monitors picking up heartbeats and the use of a vacuum to assist in delivery, our beautiful baby girl was born; this was last October and everything about her was perfect. The only thing that the pediatrician was slightly concerned with was she had some blisters on her left forearm, she thought they were suckling blisters from in utero and just asked to keep an eye on them.

We waited the 48 hours for discharge as I had group B strep and they wanted to monitor her. Everything looked perfect. Blood work was normal, she was healthy, was latching and eating well, good diaper output, hearing was great, everything was fine. We were getting ready to go on the morning of day 2 after her birth when I noticed her blisters on her left forearm had spread to her left inner thigh. I mentioned this to the nurse who was prepping her first bath. The nurse didn’t seem concerned, just went to tell the doctor.

Suddenly the pediatrician is there saying she wanted to bring our daughter into the NICU for some quick checks to make sure it wasn’t serious.

I remember walking with them into the NICU thinking “this can’t be real, my baby girl is healthy, nothing is wrong.” They immediately started an IV and had her under big lights. There were monitoring cords everywhere and all I could think was “she looks so tiny, don’t let anything happen to my baby!”

They explained that they were concerned that she may have Herpes Simplex Virus (HSV), and that they were going to need to do a Lumbar Puncture (LP) as well as gather skin samples to send off for testing. They politely asked us to leave while they performed the procedure. My husband and I had to walk out of the NICU utterly terrified and praying for a miracle, trusting the doctors and nurses to take care of our newborn baby.

That was likely the most scared I have been in my entire life. Pacing in our hospital room, waiting. My parents arrived, thinking they were going to help us pack up and go home and the moment I saw my mom I just started bawling. How do you explain when you don’t even know what is going on, when you don’t even know if your baby is okay?

After over an hour we finally got back into the NICU. Not only did they fail to get the LP, they tried twice and failed both times. As you can imagine it is hard to hit the right spot on such a tiny little spine. We were transferred to an isolation room as HSV is contagious and obviously don’t want any other babies catching it as it can be life-threatening in newborns as it can cause encephalitis.

That room is where we stayed for the next 8 days. It had no windows. It had a pull out couch bed thing not really fit for one person, let alone two. We were told only I could sleep there, but after the first night a nice nurse said we both could stay if we wanted (ummm, YES). There were cords all connected to our little girl monitoring her HR, oxygen saturation, respiratory rate, and blood pressure at all times. I was able to disconnect the cords to breastfeed or hold her, thank goodness, but she also had an IV running at all times. She got 4 different medications throughout the day and night through her IV: antibiotics and antiretrovirals. She got assessed every 4 hours by the nurses, which included a temperature check which she HATED. She had many blood draws done for blood tests, I honestly lost count of how many times she got poked.

It was impossible to clothe her as it pulled on her IV (which we tried to avoid as they kept pulling out). You had to bring the IV pole everywhere and man did that get irritating, which is small in the grand scheme of things, but it was so frustrating.

The worst part was that we didn’t know anything and her blisters kept getting worse. They were spreading over her entire body and the medical team didn’t have any answers. She had 3 LPs in total, 4 different IVs, dozens of blood draws. We saw 6 different pediatricians, 1 neonatologist, a dozen nurses, and 3 midwives (checking up on me).

Unfortunately James had to work because he had projects that were overdue. He stayed as much as possible and tried to be as present as possible. His co-workers were amazing and even sent him back to the hospital told him who cares about the clients. Spend time with your family.

My husband, hard at work but also present to be a support 😍

The first night that we stayed in the NICU, where we were told only 1 guest per patient, I felt so completely alone and terrified. I just kept staring at my little girl in her crib, with monitors beeping and just bawled. I just wanted to hold her and make everything better. I wanted James to be there because all I needed was a hug and to be told that everything was going to be alright.

We kept asking about timeline, when will we get answers, and at first it was soon, then in a couple days, and then we were told 2 weeks, which changed back to a couple days, and so on and so forth. We were beyond frustrated. We wanted answers. What was going on with our daughter and how could we help her?

One thing I have respect for now, as a Licensed Practical Nurse myself, is how long a day takes as a patient. When you live in a moderate size city and are conferring with specialists hours away, replies take forever and you are just sitting there waiting for answers.

Once we were thinking it may no longer be HSV due to negative tests, then it was looking at what it could be. After hearing back from Infectious Diseases they said, “Definitely HSV, follow this treatment plan.” The same day dermatology responded with, “Likely not HSV, perhaps Incontinentia Pigmenti, especially if family history indicative.”

So of course I was grilled about any maternal medical conditions: alopecia, odd shaped teeth, dark swirly skin, pale skin patches, miscarriages of primarily male children. Nothing made sense. What did this have to do with anything? No. We didn’t have any of those conditions.

The next day we hear from Infectious Diseases again, “Stop antiretroviral treatment immediately. Definitely not HSV as per dermatologist. Follow up with dermatology.” Wait, WHAT! So because of one email from dermatology you are changing your stance from 100% one thing to 100% something else. Our child’s life is in your hands! Stopping treatment early could cause irreversible/life threatening damages if wrong.

We couldn’t take that chance, that they may be wrong. So we decided to wait for the second batch of special testing to come back from the lab 4 hours away. Confirmed a second time, not HSV. So what did this mean now?

This meant a whole new bout of specialists. We got an echocardiogram done, saw a pediatric ophthalmologist and got an in depth eye examination, got referrals to see the dermatologist, geneticist and genetic counselor. Finally we were sent home to wait and hope that we would get answers soon.

Our journey in the NICU was terrifying for me as a parent. It’s the last place you ever want to be with your newborn baby. I struggled with inadequacy; did I do something wrong, why is God letting this happen to us? I couldn’t do anything for her to make her better and she just kept getting worse. We had no idea if she was in pain. We just knew we loved her and would do anything for her.

I know that we were so blessed to have a baby that was quite stable while in the NICU. I can’t imagine the terror of watching major interventions be performed on your little one.

All this to say, everyone’s experience in the NICU is so incredibly difficult and challenging. For those that have children at home, to be torn between who you stay and take care of must be extremely difficult! For those who’s significant others can’t stay with you and be your support, or those that don’t have visitors who can come and lift you up, it can be so draining and lonely!

I want to give a shout out to all the doctors who did their best for our daughter, for the nurses who went above and beyond, breaking a few rules for us to make our stay as comfortable as possible, thank you from the bottom of my heart. We were in the NICU over Halloween and we got given a little handmade Superman cape, which of course we declared was a Supergirl cape. We have 2 special homemade quilts from the NICU as well that holds a special place in our hearts.

Our little V was our Super Girl. She was so strong, definitely stronger than me. She didn’t have any issues with IVs or blood draws. She rarely cried and honestly was way too content considering we were closeted in about 100 sq feet of space for over a week. She was an absolute trooper and I feel so incredibly blessed to call her my daughter.

To all those NICU parents, I know how difficult your journey is. It is terrifying. Even now, thinking back I start to bawl and feel almost panicked. You are so incredibly strong. It is not easy, but know you are not alone. ❤️

Allergies and Mental Health

On By melkatborthwickIn Allergies, Parent LifeLeave a comment

Did you know that people can get PTSD due to allergic reactions?

Did you know that young kids with allergies often REFUSE to eat new foods for fear of an allergic reaction causing the to become picky eaters and at a risk for malnutrition?

So this post is for all those that have stood in the grocery store and sobbed because you can’t find anything for your family to eat that is safe.

For those that are stressed about money because your grocery bill skyrocketed since allergies were diagnosed.

For those that feel like you never leave the kitchen because you have to make everything from scratch to ensure it is safe for your family.

For those that stay at home instead of going out for dinner at a restaurant, because the thought of eating there or having your kid eat there and react makes you have a panic attack.

For those that stress every time their kid is playing anywhere that isn’t at home, wondering if someone ate something recently that your kid is allergic to…what did they touch? Will you be judged for wiping down everything in the area? What is too much? And then wondering if it might better to just stay home.

For those who decline invites to friends houses because you don’t know how well they clean and you don’t want to offend them by requesting they clean everything first.

For those who want to get frustrated with toddlers who aren’t eating in a high chair and are running/crawling around with their food; everything they are touching is now contaminated and a risk for your child or you. (Trust me I’ve been guilty of this too).

For those who try to act all cool in public but inside you are panicking about everything.

For those that carry an epi pen at all times because you never know when you might need it and the thought of being without causes you to break out in sweats.

For those who panic about trying new foods or starting new trials for ingredients, unsure what the reaction will be.

For those who constantly run through what to do for an anaphylactic response because you are worried you will miss something important.

For those that hear an ambulance and cringe inside, having flashbacks and reliving of previous reactions and the terror it causes.

For those that second guess everything, wondering if something could be related to an allergic reaction or if it’s in your head. Is that a rash, hives, a bug bite or a scrape?

For those that can’t go out in public without wearing an N99 mask because you are airborne reactive to many foods.

For those that are harassed at work or disrespected due to allergies meaning you no longer have a safe work environment.

For those who have to pay an arm and a leg to get medications compounded specially so that they are safe for you to take.

For those that are told that your baby can’t react to food through your breastmilk, to just eat whatever you want but your baby is in pain and screaming, so what else could it be.

To those who religiously check ingredients and stress about what’s in their food.

To those who have misread, or don’t reread a label and have such guilt for feeding their child something that could have killed them.

For those who have nightmares of accidentally killing their child by improperly checking ingredients.

For those that have family that doesn’t respect your boundaries you have put up to protect you or your family and put you at risk, causing you to feel unheard, alone and always in fear.

For those that don’t have a supportive spouse or significant other, to not have someone else looking out for you.

What many may not know or understand is how much allergies can affect ones mental health. I sure didn’t. I thought I understood as I discovered my allergies to gluten and dairy while in highschool and I thought it was the worst imaginable diagnosis.

I didn’t truly understand until my daughter was diagnosed at 3 months of age. I spent so many nights holding a screaming baby and bawling. I would go to the grocery store and sob over my empty shopping cart because my normal staples we couldn’t eat anymore and I had to start from scratch.

Allergies are debilitating. They can cause stress, anxiety, can break relationships, cause self doubt or fear, financial difficulty and everything that goes along with it.

For those on this journey, I am here, we all are. We understand. Find a support group of others with a similar allergy. Share your fears, share your tips or foods that you have discovered. Get medical help if you feel you have anxiety, depression, PTSD or any other mental health issues that are damaging to you, your family or is putting your health at risk. The treatment may look like medication, or it may not, but don’t be scared to get help.

To others, advocate for change, support your loved ones, try to learn about others allergies, what you can do to make it easier for them. Make a change in your office if a coworker is feeling unsafe due to their food allergies. Don’t wear strong perfumes or scents as it is disrespectful to others around you. Put out a teal pumpkin and have non food treats during Halloween. Don’t be offended if someone asks you to not eat something near them or to wash your hands after you eat, and if you do wash your hands, please wash them properly, not just tinkle them under some water.

All this to say that allergies are so incredibly complex and difficult. Let’s build each other up and create supportive environments for everyone.

If I missed anything or have a story to share, please comment. I would love to hear from you.

Our Breastfeeding Journey… with Allergies

On By melkatborthwickIn Allergies, Parent LifeLeave a comment

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.