Rare Disease Day

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?

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

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

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

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

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.

To my husband

I feel so incredibly blessed to have my husband as my helper and support through this crazy walk called life.

He supported me through nursing school, and while I was working shift work. He never complained with all the crazy stories I brought home from work working as a nurse (sorry, I know some of them aren’t meant for the dinner table, whoops).

Yes, we have had our ups and downs, but I recently I have tried to really look at everything he does for our family, and the sacrifices he has made for us.

He may not know a tonne about medical things or understand everything our daughter V is going through health wise, but he has done so much to learn and support us in this crazy journey.

When V was born we were stuck in a windowless isolation room in the NICU for 7 days. Instead of going home, he slept on those pull out couch loungers in the hospital with me, forsaking good sleep to be at our side. He couldn’t truly take time off work, so he was on the phone and answering emails, doing his very best to be present at all times so he could help.

He has never shied away from messes she makes or smelly diapers she fills.

He has tried to understand the medical jargon, and though he doesn’t have the time to do the research like I have had, he listens and learns as much as he can so he can help.

He has been a shoulder to cry on and a smile to laugh with.

I love watching the love and awe in his eyes when he sees our daughter.

Is he a baby sitter? No. And he would be incredibly offended if I referred to him that way. He is V’s dad. Just like I watch and parent her during the day, he often watches and parents for her when I need something done.

When I feel done and drained, he asks what he can do, and does it. It may not always be the way I do things but it helps, and I don’t think I tell him that enough.

This isn’t to say he is perfect. Nobody is. And of course I have had moments when I feel frustrated, I feel alone. I’m doing all this work for V, making sacrifices dietary wise and sometimes it feels like, sanity wise. I often get blinders. I don’t see the work he is doing, the countless overtime hours so that he is caught up and due to this can’t spend time with us at home as a family.

I was feeling burnt out and that V wasn’t seeing him enough, and so he now comes home for supper and then goes back to work as needed, sometimes until early morning. Some days he is as drained as me, but he will get up if V wakes up crying if I am too tired to.

It’s when I have felt most alone, without his support, that I have realized that he is there as much as he can be. He is struggling through this journey called parenting right along with me, our journey filled with specialist appointments and allergies.

Everyone always says that you will fall more in love with your husband when you watch him with your child. I didn’t understand until this past year.

My heart feels close to bursting at times.

All of this to say, take the time to really look at your significant other. Step into their shoes. Try to understand from their perspective. If you are frustrated or feel alone, try to look at all the things they do for you or your family.

Don’t tally your frustrations and their failings, look at where they have stepped up, the moments where your heart is full, the little things they do.

By looking at the positive moments more, everything feels a little clearer, things don’t seem so difficult, and I personally feel more at peace.

So tell them how you feel, thank them for their support. Thank them for being your partner, your teammate, the person struggling through life with you together, holding you up when needed.

I’m not saying it shouldn’t be expected that dad’s do these things, but I truly love having a partner who does these things because he wants to be a part of our parenting journey. Someone to shoulder the burden. Someone who steps up when needed, loves our family and truly would do anything for us.

So thank you to dad’s out there, but a special thank you to my hubby, for everything you do. I love you and feel blessed to call you mine.

Homemade Ketchup and Why We Make Our Own

When I told others that I found a way to easily make my own ketchup, everyone was begging for the recipe.

This recipe is simple, however it also takes all day. I cooked mine overnight, so I didn’t stir it as much as I probably should have, but it still turned out fabulously.

In addition, I will strive to put the recipe at the top of a post, because I hate scrolling through someones thoughts if all I want is the recipe. Enjoy!

Ketchup

  • Difficulty: easy
  • Print

This is a simple, easy ketchup that tastes quite similar to store bought ketchup. My husband James has even agreed to use this ketchup instead of Heinz ketchup (which is huge as he is very particular about what he eats).


Ingredients

2 (28 oz) cans peeled ground tomatoes*
1/2 cup water
2/3 cup white sugar
3/4 cup vinegar**
1 tsp onion powder
1/2 tsp garlic powder
1 3/4 tsp salt
1/8 tsp celery salt
1/8 tsp mustard powder
1/4 tsp finely ground black pepper
1 dash cayenne pepper (more if prefer it to be spicy)
1 whole clove

Directions

  1. Pour ground tomatoes into slow cooker. Add water, sugar, vinegar, onion powder, garlic powder, celery salt, mustard powder, black pepper, cayenne pepper, and whole clove; whisk to combine
  2. Cook on high, uncovered, until mixture is reduced by half and very thick (10-12 hr). Stir every hour or so.
  3. Smooth the texture of the ketchup using an immersion blender for about 20 seconds. (I just used my food processor, immersion blender will make it smoother)
  4. Ladle the ketchup into a fine strainer and press mixture with the back of a ladle or spoon to strain out any skin and seeds.
  5. Transfer the strained ketchup to a bowl. Cool completely before tasting to adjust salt, black pepper, or cayenne pepper.

*Ensure that the cans of tomatoes that you are buying are free of citric acid if you are corn free. I have only found one brand that “may contain citric acid”, so for now we are using that, but are transitioning to just using fresh tomatoes, peeled and cooking those down.

**For those that have a corn allergy it is important to avoid white vinegar; any safe vinegar will work including rice vinegar, apple cider vinegar, or coconut vinegar.

This should keep for one year in the fridge.

When we first found out about V’s corn allergy, which was through trial and error, I had no idea about how vast of an allergy it is. At first we thought she was only reacting directly to the corn itself; if something said “corn” specifically.

For those who don’t know, V not only reacts if she eats an item, but she also reacts if I eat that item and breastfeed her. I had no idea this was possible for the allergen to pass through breast milk, but it can, and it’s scary how sensitive V is to allergens that I have eaten (reacts after eating a tsp of something that says “may contain” of an allergen she is allergic to).

Not long after we “got it under control” we noticed she seemed to be getting worse after I had ketchup several days in a row. I researched, and all ketchup in Canada is free of corn syrup, so I was confused, until I discovered that white vinegar is made from corn. It was only after removing almost all corn derivatives that V has been doing much better (follow the link for the list, and try not to feel overwhelmed).

I can’t tell you enough how important it is to read the ingredients on anything that you buy in the store. Depending on how serious of an allergy, you may also be required to contact the company to discover if it is truly safe for you to eat.

Pro Tip:
If you are cooking for a friend or family with allergies, don’t get frustrated if they refuse to eat something after you spent all this time ensuring it was safe for them. Instead, before you make food, inquire to them if there is specific brands that are safe for ingredients you are cooking with.
If you are removing something from its packaging or using it in something that will stay in your kitchen for a while to come, don’t throw out said packaging until you have documented somewhere the brand and the ingredients. I have made this mistake several times and have had to donate to family or throw out the food as I don’t remember if it is safe or not, especially if new allergies or sensitivities arise.

This has been such a difficult journey, and I will continue to share more about what we have gone through and where we are going. It has gotten easier as time has moved on and we have created a new normal for our family. We don’t eat out anymore. If we do, I need to call ahead and talk to the chef directly about absolutely everything, not really sure if it is worth it. I am trying to switch to a whole foods diet. I am no where near there yet, but in time, I’m sure we will be making almost everything ourselves.

For those that are just starting on this journey, it is ok to cry, it is ok to grieve.
I have bawled over the fact I can’t just grab something to eat while I’m out.
Meals take work, everything is made from scratch or close to it.
Trial and error with allergies is so exhausting and the unknown is terrifying.

I felt like I was failing my daughter. Every time I made a mistake V would scream in pain for days, how is that fair? Am I a terrible mother? Should I just give up and switch to formula? Is the formula actually safe? What if it makes it worse?

There are days I just feel drained, exhausted, wondering what normal life looks like.

It’s not easy, but we are getting there. I now have many safe foods I can buy, I have found local farmers I can buy meats and produce from. I have my own flour mixes, homemade condiments, etc that I make.

So let me just say this. You aren’t a terrible parent for making mistakes. I have to keep telling myself this. You learn, you document, and you move forwards, knowing that you are making the life of you and/or your child better.

I invite you all to join me on this journey of learning. What should we be eating, why are allergies more prevalent, what does it mean to make something from “scratch”?

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.