Category: Incontinentia Pigmenti

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/

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.

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. ❤️

To my husband

On By melkatborthwickIn Allergies, Incontinentia Pigmenti, Parent Life, UncategorizedLeave a comment

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.

A Start… of something

On By melkatborthwickIn Allergies, Incontinentia Pigmenti, Parent Life, UncategorizedLeave a comment

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.