The Munch Bug To The Rescue

As soon as I started talking about how hard it was for N to eat her eggs, people started reaching out. Through several friends we heard about Melanie Potock, also known as My Munch Bug. Melanie is a speech therapist but also a feeding specialist and after hearing N's story, she finagled her crazy busy schedule and made an appointment with N. There was no way Melanie was going to let N miss her Paris adventure because an egg was holding her back.

Until I started talking about our own struggle, I didn't know so many kiddos struggled with eating at some point. I'm so glad that I opened up because it brought us Melanie and her magic! The things we keep to ourselves because of pride or shame do nothing but keep us isolated. I knew my big mouth would eventually lead to some rewards!

Melanie taught N a few important skills to not gag while she was eating her eggs. The only thing holding her back at this point is her lingering trepidation about letting herself actually enjoy this thing that was her nemesis for so long.

This is Food Allergy Awareness Week and it will culminate with the FARE Conference this weekend.  Melanie is on a panel discussing feeding kids with food allergies and she is including N's story as a part of her talk. Last night she came over to video N tackling her egg. She is allowing me to share the video also because we have the common goal of trying to help children and families as they navigate this food allergy road.

You can find the video here: https://parentinginthekitchen.com/videos-2/free-preview-videos/
(Scroll to the bottom of the page)


1)Put the egg on your back molar (avoiding the front of the tongue) and chomp down really hard! Show that egg who is boss!

2) Grip your glass tightly and wash the egg back, off the tongue with a straw.

3) You can include a game -like Buckaroo- where you get to put something on the donkeys back every time you take a bite until it bucks. This refocuses her attention to the game.

4) If you gag, take a drink of water. You cant gag and swallow at the same time.

I am happy to report that these same skills helped me overcome that mushroom aversion as well! Just in time for Paris!

Doing The Hard Things

I'm a mom and like all mom's that means that I do The Hard Things.  All of the mom's do. We do things every day that we really don't want to do. Of course, everyone does but lets be honest, moms have a lot more of those things than the rest of the developed worlds population. It's a part of the gig- we just do The Hard Things, every single day.

I did a different kind of Hard Things before I started a family. I ran marathons, traveled to dangerous places, graduated with a Masters in just over a year. I survived violence, trauma and loss. I built a happy marriage with no role modeling and felt the heartbreak of walking away from toxic loved ones.

The Hard Things are what build our world or burn it down. That part is up to us.

Now, it is essential to this story to know that I eat (pretty much) everything and I abhor picky eating. With the obvious exceptions of bugs, brains  and tongues, I'm pretty flexible with food.  Sure, there are plenty of foods I don't love but I have to just deal with that and I carry on like a big girl. Because I want to avoid that disordered type of eating creeping into my children, I'm in the You Get What You Get camp. Let's take control issues out of this and sit down and eat, okay? It's just dinner.

Except mushrooms. That rubbery texture makes me gag. I love their earthy flavor, especially in a sauce, but as soon as I make eye contact with one, I shove it aside. I never eat a mushroom that has not been minced into oblivion.

 N has been struggling with eating scrambled or boiled eggs. She never ate an egg before her trial graduation day. She was diagnosed when she was an infant and was getting the allergens via my milk. Eggs are new and weird (when not a part of a cupcake!). We have to feed her the equivalent of 1/3 of an egg (can't be baked) and 8 almonds daily to maintain her "immunity." With this in her daily diet, she is free to eat anything and everything else safely. Rockstar Husband has applied his profound creativity and problem solving to a handful of very eggy- pancake, waffle, crepe, french toast and latke recipes so we can avoid the scrambling and boiling.

When we are in a rush or on the road, she needs to just be able to eat a scrambled or hard boiled egg. When we go this route, it's high drama. There are tears and then pep talks then tears and then pep talks but eventually tempers flare and we all walk away feeling bruised and defeated.

Ugh.

But you see, I completely misunderstood. I thought it was drama. I thought her little frontal lobe wasn't getting stimulated enough without her food -allergies-attention, so she was making eggs into a thing. She wanted more control.

She's not though, eggs are a real thing for her. This isn't a thinly veiled control issue.

How did I finally realize this? Well, I told her that she needed to eat a scrambled egg once a week to get herself used to it.  I try to never ask my girls to do something I won't do so I said that I would eat a mushroom once a week in solidarity. She was quite pleased with this turn of events and agreed. I gagged at the thought but figured it was time to get over the whole mushroom thing anyway. For the past few days I visualized myself eating a mushroom and NOT gagging but pleasantly chatting as I dealt with not loving my mushroom.

I do The Hard Things everyday. Surely, a mushroom wasn't even going to qualify as a Hard Thing. I could finally kill this drama and teach her how to get through an egg.

That wasn't how it went though. I spent the whole night recovering from one mushroom (and no, not THAT kind of mushroom!). I barely got a few bites down before I started gagging.  I eventually powered through with the help of some Pad Thai noodles mixed in but I was green and ill. I was also completely and totally humbled.

I felt horrible. I deeply misunderstood her. My poor little girl has not been looking for attention with her eggs. This wasn't a show. I didn't realize how hard this part is. I didn't see what she was dealing with. Mind over matter? Not in the face of a mushroom apparently. So much for my ability to do The Hard Things. I was on my knees at the foot of a mushroom, begging for mercy.

I looked her in the eye and told her how sorry I was. I told her that I understood now and it would be different. There were a few tears from us both. She was finally validated and didn't feel so alone in her struggle. She must have felt pretty alone staring down that scrambled egg until her Mom came off that high horse and bowed to the mushroom.

Apparently The Hard Things can be bite sized too. Fortunately for us both, we get to go through it together. One mushroom and one egg at a time.

Gulp.

Graduation!

It's been over a month and life on this side has been everything we hoped. It's actually been more.

We really had no idea we were so tense. N was diagnosed with severe food allergies before she even ate solid foods (she was getting it through my milk). She had an epipen script before she could toddle. We had no idea what life without a food allergic child was like.

You all have been holding out on us. Holy Freaking Cow! We can eat anywhere, anytime! ANYWHERE! Anything! Stuck in the mountains because of bad weather? Go eat ANYWHERE. When I get on a plane, all I have is snacks, not enough food for days. Stopped at Starbucks and you want a chocolate croissant? Sure!

One word: Takeout! 

Most importantly, she's not scared anymore. You can see it in everything she does. You can see it when she races towards the moguls and heads into the trees at a pace she wouldn't have considered last year. You see it when she runs off with barely a hug and a kiss goodbye. The ground under her feet is solid now. She can embrace the freedoms she was denied before. She went away for a weekend to the mountains with a friend and didn't even flinch. She is blossoming without all of that fear holding her back.

We went for the 36 Week visit on January 13-15, 2015. Graduation!

She was a ball of high strung nerves. We decided to challenge the eggs first because this was the most ominous to her. Her serious accidents all involved eggs and she would need the equivalent of two whole eggs with doses 15 minutes apart to simulate actual eating. Since she was struggling with her smoothies, getting six of them down back to back was daunting.

She did it though. Once she hit the equivalent of one egg, there was no stopping her. She knew she had it! Oh my, did I cry! There were hugs, tears and laughter. It worked. It really, really worked. All of the money, travel, tears and exhaustion were worth it. The treatment worked. There won't be more epipens and ambulances and trauma. That part of our lives is all done.

 At a restaurant that night, she grabbed food off of her Dad's plate at a restaurant. In her whole life, she's never done that. She's had this intensely controlled and fearful setting to eat in her whole life. Not that night though! Not anymore! The next day, she had her first gourmet cupcake and that sealed the deal for her. She completely embraced the change. Her fear was logical and it didn't become something unreal. Once the threat disappeared, so did her fear.

Two days after her egg challenge, she challenged almonds. She wasn't nervous at this point and the excitement was palpable. She powered through and just like that, she was considered desensitized to her allergens.

Whitney the Fabulous had her eat an actual egg in front of her to make sure she had the head game to go home and get it done without her powdered doses. That wasn't fun but she did it, as she tends to do.

It was Fhizzy Whig's 6th birthday and we celebrated with the medical team. There were gourmet cupcakes (from a bakery! not baked by me!). There were a few more tears too. My littlest Big Girl was more than happy to share her day with her sister.  I know N learned a lot from having food allergies and going through the trial but her sister seemed to pick up a lot of those lessons along side of her.

Then we headed to Monterey for the weekend to celebrate Lil' Bit being 6 and N being free to eat.  We ate our way along Steinbeck's coast. Donut? Sure! Cookie? Sounds awesome! Waitresses hugged us when we told them why we were so giddy over a burger. 

Finally on Fishermans Wharf in Monterey, there was a real, eggy crepe. There will be in Paris, too. Just hang on a few months, Bugaboo.

It was the most authentic and uncomplicated celebration I've ever participated in. She is finally free.

Game Time

December ran over our household like a freight train.

November ended on a tragic note. Our beloved dog, Tucker suddenly passed on November 30th and our grief clouded the entire holiday season. If you're a dog person, you get how heartbroken we are. He was our bestest buddy and the loss of him has tinged everything joyful we faked our way through last month. It also brought some bumps on the road to food allergy freedom.

N had an episode of vomiting after a treatment one night in early November. She was very full from dinner but it was close to bedtime and she needed to get it done. Keep in mind that her treatment dose is a lot of food. It is 4,000mg of protein in powder form that needs to be mixed with something (pudding at that point in time) and enough of it to make it not taste like powder. So, N got too full and got sick (no, she did not make it to the bathroom).

It happened one more time two days later and it was obviously a Pavlovian reaction. Her fear of throwing up made her throw up.

She began to take longer doing her treatments and her sunny attitude began to dim. Then the night Tucker died broke her. She was sitting at the table, eating her dose. Tucker was in the basement very ill. We went into emergency mode. Our dear friend who is a Vet came over and said it wasn't an injury but that he was bleeding internally. We then began the excruciating task of carrying his lethargic body over the ice to the car. The girls came out and kissed him goodbye.

Not surprisingly, after I drove off into the dark with our bestest buddy for the last time, N threw up during her dose. And no, she didn't make it to the bathroom.

She started throwing up a lot. Most of the times she wouldn't even make it half way through. We all knew it was a psychosomatic response and that her gag reflex was charged up. Her head was no longer in the game. I tried yelling at her once to see if I could shock her out of her trance. Needless to say, that didn't work.

It all came to a head one Monday night in mid-December. It was a very long hour of her barely taking nibbles of her dose. The Hubs and I cheering her through every little taste and distracting her with games and activities. Then she threw up anyway. You guessed it, not in the bathroom.

We told her that this was it, she needed to decide what she was going to do. If she kept vomiting, she wouldnt be able to complete the trial. She wasn't keeping enough of her allergens in her body for it work and we couldn't let her throw up several times a week. We talked about all of the freedom and independence she's gained now that the world is so much safer for her. We reminded her of what it would look like if that freedom went away.

We talked and we cried and we talked and we cried. I walked away a few times because I was so scared and angry. I couldn't let my girl take on the role of victim. There is no room for that in her life.

I was up most of the night. She went to bed around 11PM, sad and feeling beaten.

That night, it snowed. It snowed so much that school was canceled and school never gets canceled here for snow. We woke up to our whole world covered in soft, perfect magic. Suddenly, there was nowhere we needed to be. Right in the middle of a personal crisis and an insane holiday season, the snow came and made everything better. We could take a minute when we really, really needed a minute.

N came downstairs the morning of the snow and said she wasn't going to quit. She said she wanted to do this and folks, that was it. She hasnt even flinched. She does her dose in under 30 minutes every day. She identified smoothies as the best way for her to take it and this helps grind the powder up more so she doesnt deal with the grit. She smiles through the whole thing and her game is completely and totally ON.

BAM!

Once again, this little girl of mine has humbled the hell out of me.

So, here we are at day 182 and just a week left. JUST A WEEK LEFT. Next Wednesday and Friday she'll be open challenged. There will be no double blind placebo fun this time, just an outright test of what her immune system is like 36 weeks after she started.

No matter how next week goes, she's gotten herself at least as far as this place where she is heaps and heaps safer than she was 182 days ago. She doesn't have to worry about crumbs and spills. At best, she'll be ordering crepes on the second floor of the Eiffel Tower this summer. And she wont even ask about the ingredients.

Joining The Club

We were in the car, driving to the airport. An adventure lay ahead- New Orleans and then a visit with my oldest friend in Mississippi. Just Mommy and Fhizzy Whig! Then it happened. Her tooth wiggled for the first time.

She's been waiting for this moment since her Big Sister lost her first tooth 2.5 years ago. EVERYONE else in Kindergarten (except half the kids I named), have already lost a tooth.

She was more excited about her wiggly tooth than she was about beignets.

Cut to two weeks later and its Thanksgiving Break. The sisters are spending the week sleeping together in N's room. They are inseparable. I'm waiting for them to finish getting ready so I can do the tuck in when they scream simultaneously, "IT CAME OUT!!!!" N had yanked out Fhizzy Whig's tooth!

Finally, she was a member of The Club.

We all scream and dance and eventually decide that they need to go to sleep so that the Tooth Fairy can visit. They are tucked in and I'm reading them their good night poem. I look up at N and her face is red. She burps. You okay? Fine. Just a burp. Then she throws up everywhere.

It's an hour and half after her treatment dose but she had thrown up right after treatment once this week and I'm getting worried. Like the other time, she was very full and barely able to get it down. This was an hour and half later though. Why was she throwing up this time?

More importantly, why does she never seem to get to the bathroom when she throws up?!?!

Fhizzy Whig stays put and I whisk N into the bathroom. I throw towels on the floor and get Fhizzy Whig into her room. The Hubs comes up from the basement and then the smell knocks me out and I'm sick. N is in the shower, crying. Clean up ensues.

I glance in at Fhizzy Whig sitting on her top bunk. Her damp hair is stuck to her little face, she's clutching her stuffed dog to her chest and sobbing. I go in to reassure her and her face tells me that she's utterly heartbroken. She had been SO happy. She had finally lost a tooth. Her sister had been as excited as she was and she was finally a part of The Club. Now, its late and everyone is running around cleaning up vomit and trying to make N feel better.

It was all about her for once and now it was all about N again.

She didnt say that though. She was sad for her sister. She was sad for what happened. She didnt insist that it be all about her.

N said she was scared and wanted to sleep with us instead of in Fhizzy Whigs room. N's room was still in hazmat condition so that wasn't an option. This was crushing. Fhiz understood though. She sobbed but told N she didnt want her to feel scared.

We told N that maybe her sister needed her more than she needed us right then.

Now, everyone is crying and trying to do the right thing. N goes and climbs into the bottom bunk but is still crying. She's scared. Fhizzy Whig's big night is ruined no matter what N does. Fhizzy Whig tells her that she should do whatever she needs to do and that she'll be okay.

Each of them is looking out for the other. Neither are crying for themselves. My Mama heart is sad but proud.

I sigh and agree to pull out the trundle and sleep in there. If they can both do what the other needs, surely the grown up in the situation can too. Everyone (except me) is thrilled now. Everyone can sleep now. Fhizzy Whig has N and N has me.

Somehow, the Tooth Fairy got to her pillow with all three of us in there. 

Week 24- Holding Steady

For the past 4 weeks, N has been on her "maintenance dose."

Huh?

That's the quantity of her allergens that she needs to consume daily. So, she no longer goes up in quantities or "updoses" every two weeks. For N and this trial, that means she is at 4,000mg combined or 2,000mg of egg and 2,000mg of almond. That's a lot more than the 2.5mg she reacted at in the spring when she went through her challenge (remember this?).

The drug (Xolair) takes three'ish months to wear off and she had her final shot eight weeks ago. About two weeks ago, I saw N really start to emerge from the fog brought on by the drug. Her energy and cognition returned. Based on how exhausted I am, She Is Back! In a few weeks I will probably be correcting myself and thinking, "Heh, now she is really back."
 
There have been some feelings. Coming down from the stress of trying (and sometimes failing) to keep a highly anaphylactic child safe for over 7 years leaves a few bruises. I wont speak for the scars she's been left with but we're working on that too.

There is a lot of re-training we need to do and although N can't eat anything she is allergic to outside of her daily dose, we have started having eggs and almonds in the house to normalize it. In 12 weeks it is very likely that she will be able to eat anything and everything, regardless of its ingredients. We realized it would be too odd to go from lockdown in the house to making scrambled eggs for breakfast. So, we are easing into it.

It's weird. It's really, really weird. I shake a little when I put almonds in my smoothie or throw an egg in my salad. Big brown eyes have glared at the other plates at the table. She's Ms. Resilient though so she takes a deep breath and we talk about how weird it is. How exciting it is. How scary it is. How amazing it is. How daunting it is. Then I drink my smoothie and act as normal as possible.

Doo-di-doo. Just drinking a smoothie that would have killed my child 6 months ago. Doo-di-doo.

And the pan I used to cook the egg? It's the cleanest pan in the northern hemisphere. I'm not totally *there* yet. Baby steps, people. Baby steps.

We will take a quick day trip to the clinic on Thursday because her blood and skin need to make their contribution to the trial.  In and out of California in a day. In mid- January she'll do her big challenges. We'll see if the protocol has eliminated her allergic response entirely or if she can only tolerate her daily dose but still needs to avoid her allergens outside of that. The latter is worst case scenario and that is miles ahead of where we started so really, we can't go wrong. The world is so much safer for her than it was when we took a deep breath and jumped into this trial.

We'll take whatever we get. See you Thursday, California.

Desperately Seeking A Dull Moment

Here in the Rockies, the aspen trees are at their peak glory. This time of year its like rivers of gold are running down our mountains. The sky is so blue it makes your heart ache. A few hours out in this wild world will settle your frazzled head. We opted to head into the mountains and push our reset buttons.

So, the Hubs was getting his haircut and picking up sandwhiches. I was packing us up for the hike, feeding little girls lunch and giving N her treatment dose (currently 3,000 mg of her allergens combined) before we headed for the hills.

Rush, rush, rush before we reset, reset, reset.

Then N threw up. She was upstairs and she called out to me with a loud and shaky voice. I ran up the stairs and she continued to throw up. She was really afraid, excessive vomitting is a symptom of anaphylaxis. I asked her if she could breathe okay and if her throat or mouth felt funny. She said she wasn't having any of those symptoms so I turned away for a second. I called Lil' Bit to me and quietly asked her to hurry and get my phone and the epipen.

N continued to throw up. Everywhere. To sum it up, none got inside the actual toilet and the Hubs had to pull out a ladder to clean some of it up. Good enough imagery for you? Me too.

I texted the Hubs
Me: come home, N sick
Him: ok. do you still want me to pick up sandwhiches?
Me; no,vomit pouring down walls

Who said that kids kill the romance?!

Anyway, back to the exorcism scene on our second floor.

She was okay. I didn't need to use the epipen because she finished and had no other symptoms. I called the emergency number for the SNP Allergy Clinic and we jointly determined that she was just over full. Her tummy didn't ache before she got sick. Her breathing was fine. She had a big lunch, a green smoothie and then 3,000mg of her allergens mixed with whole milk pudding.

I feel sick just thinking about that much food. 

Lil' Bit really wanted to be with her sister and help but I didn't let her because
1) There was a path of towels through the upstairs and it would be too much for her if she saw how sick N had been and,
2) There was still a chance I was going to be jabbing an epipen into a thigh and Lil' Bit was scared enough.

Since she couldnt get to her sister, she sat under the balcony so her sister could hear her and she tended to N's lovey- Sheepie. She knew Sheepie wanted to be with N but couldnt get to her so she wrapped him in a blanket, read books to him and soothed him. She kept N updated with a continuous monologue that calmed N down better than I could. It calmed all of us down.

Sisters are kind of awesome.

The trial has gone so well for her and this little bump in the road was ugly but ultimately small (except in volume). Still, we had to go to a half dose the next day. Yesterday we went back to a full dose with no symptoms, confirming that it was just an overfull 7 year old tummy that emptied itself and not an allergic response. There were a few tears before hand but she did what she does and faced it with courage.

We got up to those rivers of gold the next day. We ended up not having to rush because everything was ready from the day before and nothing else was on the schedule until the evening. The girls splashed in snowmelt and appropriately oooh'ed and awe'd at the majesty of nature (and my prompts). They hiked with little legs up steep trails and fell asleep soundly after watching the lunar eclipse.

Not all not-so-dull-moments are created equal.