Mental health check-in

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

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

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

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

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

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

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

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

“well then it must be from a milk clog”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Am I ok? Some days.

Am I broken? Every day.

Have I struggled. SO MUCH.

Do I feel like a failure? 100%

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

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

I feel fat, which obviously isn’t true.

I feel lost and alone.

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

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

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

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

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

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

Much love,

From a struggling mom

World Rare Disease Day

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/

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.