Excuse the distorted long alien looking arms. I had to make an appointment with the allergist. I’ve had a number of incidents with a few foods that made me question if I have developed food allergies. I’m almost 39 years old, how am I now developing allergies? OSMOSIS! It has to be. I am some freak, that through the process of carrying 4 very allergic babies, with their daddy’s allergic dna that has absorbed into my system somehow tweaking my dna causing me to now be allergic as well. That has to be it. The reaction that sent me to the phone to make the appointment was a full blown coughing, tight throat, tight chest, scared the pants off me, 4 benadryl worth, Nathan with epi in hand ready, anaphylactic reaction. The reaction, i thought, was caused by onion.
So I went in this morning by myself. We marked about 35 foods to to test. The following came back positive: almond, banana, casein (a protein found in cows milk), crab, halibut, oyster, scallops, soybean.
Here’s something interesting. My positive prick only welted up a tiny bit. Therefore, my reactive foods were tiny as well. However, the reactive food are considered huge allergens eventhough they were small because the positive was small as well. My kids always welt up huge as does their positive.
I was advised to stay away from all types of fin and shell fish. Stay clear of tree nuts. Two foods i highly suspect and keep having reactions to are garlic and onion. We are going to do blood work on all the positives plus onion and garlic. I’ll have those results in a few weeks. The allergist jokingly asked, and in a way told me I should get scoped for EoE. She said its very odd for these things to come up. If it was one or 2, that would be normal. She said it would make a lot more sense why our kids have the disease at the far end of the horrible spectrum.
I’m going to be honest, this scares the pants off me. I did not enjoy the reaction I had when Nathan almost jabbed me with the epi pen. I don’t want to actually LIVE the allergy life. Let alone EoE. I guess to lead my kids in a positive manner through life, what better way than to be experiencing it myself, right?
I may be done having babies, but I want to share some tips on what I learned having gone through 4 pregnancies. Each one being very different from each other. I started in my 20’s and ended with my last pregnancy being labeled a geriatric pregnancy. Three were uncomplicated, while the last one was on the high risk end. I traveled, I moved to different states, 3 of my pregnancies I packed up and unloaded a house, I wrangled toddlers and all while far from family and friends. I’m not a doctor and I wouldn’t consider myself a pro, but these are just some things that may help you get through your pregnancy.
- Morning sickness may or may not happen. I covered the whole board with this one, from barely noticeable to so sick and dizzy I couldn’t stand it. I used seabands. They really helped relieve the nauseated feeling. I also recommend that even though you feel like you’re about to toss your cookies, force yourself to eat a little protein like a handful of almonds and a few crackers. Having something in your belly does help. If you come to a point where you’re losing weight, you can’t function and your doctor wants you to take something, please do your research. Anything that goes in your mouth may go right into baby as well. Are you aware there is a list of A, B or C medications that rank from safe to unsafe for baby while pregnant? One drug often used for morning sickness is Zofran. You can find information about possible side effects while using this drug during pregnancy here.
- Once you’re over the morning sickness think about what you’re eating. I made the mistake with my first pregnancy treating it like a free pass to eat what ever I wanted. It takes 9 months to gain weight and it will take 9 months to get it back off. Remember though, the second 9 months after birth you’re also raising a tiny human. Trying to focus on yourself, diet and exercise aren’t really easily done with a newborn. I’m not saying you can’t indulge, just don’t go over board. You do need a few hundred extra calories for baby, not an entire pizza and pint of ice creams worth. Make sure you’re getting a well rounded diet of fresh veggies, fruits, proteins and grains while keeping the fats to a minimum.
- Be active. Keep your body moving. Go for walks. Work in the garden. Clean your house top to bottom. Many woman who have a regular exercise regimen can keep it through most of their pregnancy. You aren’t going to hurt the baby if you go for a jog. If your body is use to jogging and your doctor gives you the thumbs up then go for it! Picture an egg in a mason jar full of water. If you shake it, the egg doesn’t break, same situation in your belly. Baby is just fine in there. By staying active you’ll feel better overall and it will also make getting rid of baby weight afterwards so much easier.
- Keep a journal. Keep it beside your bed and make some notes every day or so of what’s been going on with your body. How you feel. When you felt baby move. When is baby most active. Foods that don’t agree with you. Just fun things that will help you with your next possible pregnancy and it will be enjoyable for your kids to read when they’re grown expecting their own babies. Kids are curious about mom and what all she’s gone through for them.
- Sleep. Sleep. Sleep. Don’t deprive yourself of sleep. You need it. You won’t be getting much once little junior comes along. Your body needs sleep to recovery daily from growing a person. Let me make that clear, YOU ARE GROWING A PERSON, it takes a lot of energy. If you’re so exhausted to the point that you’re falling asleep at your desk you may want to check with your doctor and make sure you’re not anemic. A few extra hours of sleep each night should suffice if all is well.
- Get the details in order. Before your pregnancy due date is at the door step make sure and find out all the details with your hospital and insurance. This will save a lot of hassle instead of making yourself crazy while delivering a baby. Know what you need to do for the insurance company. Visit the hospital maternity ward. Don’t let there be any surprises on babies birthday! You want to be able to focus on baby, not the fact that your husband forgot to give the insurance a heads up that you’re in labor and admitted. Also, have a birth plan ready. Know what your options are for having baby, water birth, standard old fashioned delivery, pain meds, dark room and no people, bright room and your 5 closest friends. You don’t want anything to ruin the special day so know the details before it’s too late.
- Things are going to happen to your body. Don’t go searching the web for answers and don’t get on question and answer forums. You will scare the pants off yourself. Just call the nurse line and ask her. If needed she’ll get you in asap to see the doctor. She will know from your description what is going on. You are not the first person that has ever called with this problem and she will know if it’s urgent or not. That numb feeling in your leg, normal. Back pain, normal. Hip feels like it’s about to fall out of the socket, normal. Things going on down there, normal. You can’t sleep laying down because your heartburn is so bad, normal. Pregnancy can be rough on us. I assure you though it’s probably normal, just call the nurse.
- What if there’s something wrong with baby. In my last pregnancy I had single umbilical artery. Which means there is only one single umbilical artery in the umbilical cord. It is a common abnormality. However, in 25% of these types of pregnancies it can mean that baby has other abnormalities. Sometimes life threatening. Some babies will have heart problems. We never did any of the in depth prenatal testing with any of our babies. I didn’t do any further testing with this baby either aside from an in depth ultra sound and some extra doctor visits to keep a close eye on my blood pressure. Which, for the record, I am not sure how it wasn’t sky high with this pregnancy having one kiddo with a brand new feeding tube then a second one got hers while I was pregnant. I believe it was my ability to always keep calm. Try not to stress out. Know that everything is in God’s hands. If something comes up during an ultra sound that doesn’t quite seem right with baby, I advise you to gather every single bit of information from the doctor about what’s going on. Do some research. Know the facts about what’s going on. Share with friends and family and have support. Often talking about it can help relieve a lot of stress.
- Do something for yourself. I don’t just mean go get your toes done. I mean really do something for yourself. Everything in your life is about to change. You won’t be caring for yourself and your husband anymore. There will be a new guy in town and he will steal the show, along with every selfish moment you use to have to your self. Take a mini vaca if you can. Do things you’ve wanted to do like go to a music concert, drive to that antique village and shop all day, head to your best friends for a girls night. Do something for you. You may have someone else attached to your chest for the next year so take advantage of the YOU time you have left. I’m not trying to make that sound negative, I’m just saying from experience there isn’t much “me” time anymore. Although I don’t miss “me” time, other moms may.
I hope some of this helps get you through. Maybe there’s a nugget of information in here you hadn’t thought of before. It’s just some main pointers I wanted to share from the start to the end. Enjoy your pregnancy as much as you can. It’s a very special time in your life when you have super powers to grow a human! You’ll never experience anything like it again.
Oh! I do have one more:
10. If allergies run in your family here’s what I found out by experimentation. Because of Nathan’s allergies I avoided nuts and fish with Charlie’s pregnancy and nursing. At age 3 I fed Charlie peanut butter for approximately 6 months before he ever broke out in hives. He is currently allergic to all nuts and shellfish. He tests positive to shellfish but can eat shrimp just fine. He can eat also fin fish. With Gage’s pregnancy I ate peanut butter, but no fish. Same during nursing. Gage is extremely allergic to all nuts and can eat some fin fish, but not all, such as salmon. Salmon causes an asthmatic reaction. With Tinleigh I ate both nuts and fish. Tinleigh just tested positive to nuts with her last allergy test a few months ago. She has never eaten a nut because she wasn’t 3 before she got her button. Tinleigh has eaten fish with no problem. I honestly don’t remember what her test shows to shellfish but she can’t eat it anyways because of the EoE. With Layton I attempted to eat nuts and fish while pregnant. I became allergic to both. Today I can eat peanut butter, but a tree nut will make my mouth become itchy. I have tried fish and my throat swelled along with an itchy mouth. I had a scallop while I was pregnant and had the same reaction, haven’t tried shellfish since. This week I am going to the allergist. I may be some freak mom that because I have carried 4 very allergic kids, they have caused me to become allergic to things. Crazy right? As for Layton she does not test positive to fish or nuts. However, she really hasn’t had exposure to those things and won’t until she is 3. Time will tell. So with that said, should you avoid nuts and fish or does it even make a difference? I’m going to say eat what you want. I don’t think you can prevent it. Same goes with nursing. Some reports even say earlier exposure may reduce their risk of having an allergy. Who knows. Let’s just pray for a cure for allergies and EoE!
Sounds like an Asian dish but it’s our food trials. Gage and Tinleigh are both trialing sweet potatoes and its going great. So far homemade sweet potato fries are the favorite way to eat them.
I’ve also found some crinkle fries. They’re a bit pricey though, as all allergy food is.
When making my own i skin and slice the potatoes then rub the sticks in olive oil. I then place them on a baking sheet and bake at 380 for 15-20 min flipping them half way through.
Sometimes I sprinkle them with salt, sometimes cinnamon and sugar.
Gage is the one trialing broccoli. He likes it raw and will eat an entire head of it if i let him.
I’m so glad my kids like fruit and veggies. Gage had tried pineapple but his mouth became itchy and broke out in a few hives. Gage also tried watermelon and broke out in hives around his mouth after a few bites.
Tinleigh loves oranges. She especially loves orange juice cartons!
Charlie is the lucky dog that gets to trial beef and its going great.
Here he’s trying beef sausage and sauerkraut, not his favorite. He’s had hamburgers, steak, beef hotdogs and beef roast. Everything agrees with him from an ige allergy standpoint.
I’m so happy for them all!
Layton’s milk trial is going great too!! She wont drink it plain quite yet and hates cheese and yogurt. We still keep offering it to her in hopes she’ll eventually eat them.
She loves to sneak food off the others plates every chance she gets!
It’s so strange to just throw food on Layton’s tray and not have to think about if she’s allergic. Tonight it’s peas, mango, crackers and shredded mozzarella. She has 3 molars but is still choking in meats, so she gets that through baby food at this point.
One happy mom right here!!
I think it’s probably safe to say all moms go through a phase in their life when they lose their true self. You get married and make it the best marriage you possibly can. Then you begin to have babies. A baby will make most women the most selfless person she could ever be. What a larger population of moms don’t experience is having a child with special needs. Four years into being a mom I was blessed to become one of those moms. That’s when i started this blog. At the time I was going to conquer the world of allergies and EoE with enthusiasm and show people how to still live. Here we are 5 hears later. I am definitely not that same mom. I am whipped. I struggle a lot of days to just make it through the day. Pushing myself to keep everyone fed, loved and safe. Often repeating “if i can just make it to bedtime tomorrow is a new day.” I was recently talking with someone I had just met and they asked what I like to do for fun. What are my hobbies? I laughed. This person doesn’t know quite everything we have going on with the kids. I said well the kids consume my every waking moment. There’s 4 of them and that’s a lot to have going on even if we didn’t have issues. So add all their medical needs and special diets in there and that’s my day, my every single day of the year. I got a funny look as i explained i have no hobbies and i don’t really ever do anything for myself. 1. I have no time. 2. Between the medical bills and grocery bills i feel guilty spending anything on myself.
This got me thinking. What am I most unhappy about aside from the kids having issues? I feel like crap. I have zero energy. It’s like they’ve sucked the life out of me. I hate that I haven’t lost the last of the baby weight they gifted me. I have become a secret eater. I sneak things when they’re not looking because i feel bad eating in front of them. Nathan and i eat dinner after they go to bed because we don’t like them sniffing our plates of food they can’t eat. Eating right before bed is definitely not helping the baby weight come off. I need a change.
I tried clean eating for a while, but i would have a bad day and end up having a binge of emotional eating ruining all my efforts. Do other moms of kids with needs binge eat or does the stress do the opposite and they don’t eat for days? I’m not one to have a drink to help unwind and relax. I’m always afraid we’ll have a situation where someone needs to go to the ER the moment i finally do start to sit back and relax with a glass of wine. After some long thinking and debating in my head I came to the conclusion that i was going to get ME back. Fun, loving, energetic, in shape ME! I then began a great debate in my head. A lot of my thoughts were, i don’t have any extra time. How in the world will i possibly cook another meal? How will i find time to exercise? If i take this leap will i let myself down? I had a plate full of reasons why I couldn’t find myself again.
You know what I did? I threw the plate of excuses it in the trash. I picked myself up and I started a 24 day challenge. I started a transformation to become the old me again. You know what, I did it. I completed my challenge and it was easy. I am on my way and not stopping!!!
I dropped inches and pounds and I’m still going! I feel great. I have energy. I don’t wake up in the morning trying to figure out if I might be able to take a nap. I can keep up with the dishes and laundry. I took all 4 kids to the pool this week multiple times and I wasn’t exhausted.
I’m exercising about 20 minutes a day. Funny thing is I want to! I can see my results and it’s pushing me to keep going. The girls even exercise with me. It’s adorable. it’s second nature to me now to want to eat healthy all day. I prep my meals for the week on Sunday so I’m not tempted to grab something fatty instead. Sure, I’ve wanted a chocolate brownie. Yes, I’ve had a bite of one. I have not binged at all. I even eat breakfast instead of drinking coffee until lunchtime. My emotions are still high, because I constantly have little people begging me for food they can’t have. Little people having food reactions, not wanting to hook up for a feed, upset because they miss tacos and hot dogs. None of that will ever go away. I am however, feeling good about myself and happy. I think in turn that’s helping me cope with everything the kids have going on. I am so worth this! It is helping me be a happier healthier mom. I definitely think that if I can do this anyone can! Any mom dealing with day to day special needs kids needs to take care of herself and I forgot that. These kids need me more than anything.
I’m almost 30 days into this “finding ME again” journey, so far, so good.
Peace, love and Spark.
Charlie has fallen in love with beef. He loves it, and so far it agrees with him.
We didn’t just hand him a burger to start with. We started by rubbing some on his lips then he took small bites building up to larger bites over a period of an hour. Knowing anaphylaxis all to well we know better than to just go at a new food full throttle.
We did the same with Layton and dairy. We first just gave her a drop of milk. Then an eighth of a tsp and so on. She really doesn’t like the taste of it yet. So we’ve also given her a small amount of bryers vanilla ice cream.
She had blood in her stool as an infant with dairy so we’re not going to give her large amounts until we’re sure she doesnt have that issue again. We don’t want to cause her to have belly pain. So far it looks promising!
A cute picture of Tinleigh at Laytons high chair. What you don’t get is the whole story, another example of how tough it is. Tinleigh wants so much to help her baby sister eat. She wants to dip the fries in ketchup and feed them to Layton. Tinleigh hasn’t dipped her own fries in ketchup in who knows how long. Doing it for Layton is fun and the closest she’ll get to doing it for, probably, a long time. I can’t let her touch them though in fear of a reaction. So instead I have to tell her to back up and not touch. Which makes Tinleigh sad because she just wants to help.
We scheduled all four kids to be scoped on the same day. Our crew filled the 4 spots the hospital would do that day.
The night before we made the 3 hour drive to the hotel. We set up a formula bar.Fed everyone a snack and attempted to settle in for the night. Layton luckily went right to sleep in her pack’n’play. Tinleigh slept with mom and I. Nathan and the boys took the pull out couch. I think Nathan got the short end of the stick as I noticed Gage basically slept on top of him all night.
We had to get up bright and early. I tried to keep track of the times things happened and do a blog post that way, it ended up too crazy for me to keep going back to log things in.
Here’s as far as I got
4:30am up and at em
4:37 i put my makeup on by the light of the microwave
4:45 mom broke her diamond necklace in the dark hotel room and the diamond flew off
5:00 woke up kids
5:15 found missing diamond
5:30 headed to hospital
5:50 checked in all 4 kids
6:20 got called back to our room
7:15 Layton got loopy meds
7:35 Layton went back
8:05 Tinleigh got loopy meds
8:10 Laytons done
Tinleigh went back
Gage got meds
9:07 Gage went back
After this I wasn’t able to keep a log. Once Gage went back Layton came out. Mom and I headed down to be with her and could hear her yelling as we rounded the corner. I knew I had another little Tinleigh on my hands. We walked into her curtain area where one of the nurses was trying to hold her as she screamed and tried to wiggle away. She was fired up. I noticed something in her mouth. I quickly asked what it was. The nurse said a goldfish cracker. WHAT?! I said don’t those have dairy in them? I don’t usually buy them because my other kids are allergic to them. The nurse looked at me and said no it’s just wheat. We scooped the cracker out of her mouth anyways, they handed her to me and then they all left. I grabbed the bag of crackers and sure enough there’s milk in the crackers. I looked down at Layton and right there around her ankle is her little allergy bracelet with one work on it: MILK. I was pissed and nervous all at the same time. I was trying to calm her down, watch for any signs of a reaction and trying to figure out in my head how to handle this situation with the nurses. Her regular nurse came in and I told her in a calm manner the crackers do have milk in them. I then told her if this would have been Tinleigh she would be having an anaphylactic reaction. The nurse went and said something to the pacu nurses about their mistake. I left it at that. Luckily Layton was fine. I called the patient advocate line the next day and took care of the situation. I then asked the nurse for a glucose bottle for Layton in hopes it would calm her. That’s what always worked for Tinleigh. Sure enough it worked for Layton as well. Layton didn’t like the heart monitors, her IV or the blood pressure cuff. She just wanted it all off. So we keep giving her little bottles of water and turned on the tv. I was able to keep her a little more calm until it was time to unhook her from everything. Once she was finally calm Tinleigh came rolling into our recovery bay. Tinleigh has a history of waking up crazy mad. The doctor now gives her a little something to calm her down. It works like a charm. She woke up happy and mellow this time. She saw Layton’s little bottle and instantly wanted one too. She may be 3-1/2 but if it keeps her happy then so be it. We entertained the girls for a while and then Gage came out. We propped him up in a chair and he was quiet and content. Didn’t want bothered only wanted some sprite. Layton was starting to want to run around by this point. So we found a wagon and took the girls for rides up and down the hall. It was still early in the morning and we were the only ones in the whole recovery area. Finally Charlie came out. We propped him up in a chair as well.They boys sat drinking sprite and watching tv. No one got sick. No one threw a fit, except Layton. It was a good day for scopes. The doctor came and spoke to us once everyone was done. Everything appeared good in each of them. Tinleigh had one little spot that looked like small ulcer so they biopsied it. Other than that all the inflammation was down. We know not to get our hopes up because that doesn’t always mean they’re eosinophil clear but it is a good sign that things could be better. We left the hospital by 12:30. We were all exhausted but it was over, we did it.
Friday afternoon I got a call from the doctor. Results were in. I felt numb. She asked who I wanted first. Layton of course! Guess what Layton scoped clear! She may also start on dairy. I couldn’t believe my ears. I think I’m still in shock. Does this mean she’s cleared for life? No, not really. She is on all food at this point in time and is scoping clear. It could flare in the future. We’ll pray that she doesn’t. Charlie was 4 before he started having issues and he was on a regular diet until that point. Let’s think positive though. Next up were Charlie’s results. He was clear all the way through. There were no more eosinophils in his belly either. We had removed soy and started him on reflux medication. The eosionphils in his lower esophagus were gone also. So we will keep him on the meds and off of soy going forward. Even though he doesn’t show any allergic reactions to soy his skin and blood test for soy are huge. So in this case allergy testing does work for him trying to figure out EoE. Charlie is going to trial beef next. He hasn’t had beef since he was 4 and that was the food that set everything into action for him as far as allergies and EoE go. He can only eat pork and fish right now and really needs another protein. Chicken is a trigger and he keeps testing positive to shellfish so beef it is. Fingers crossed he doesn’t have an allergic reaction.
Gage’s scope was better. All of his inflammation and furrowing were gone. So the removal of corn helped clear things up. However, he was still showing 10/12 eosinophils in some areas. Gage has always had a lower number of eosiophils since having a feeding tube. The highest it’s ever been though is a 9. We don’t want to see these numbers in a steady climb. Cauliflower was the only thing he was trialing. I mentioned to our doctor he has been complaining of his throat burning. So we are going to let Gage keep cauliflower and start him on reflux meds. We are hoping maybe he has some reflux going on and this is why he’s showing low numbers of eosinophils. We will let him take the meds for 2 weeks before letting him start a new trial. His new trial will be broccoli and watermelon. We will scope him at the end of July.
Tinleigh failed her food trial this time around. Although she didn’t have any visual signs of EoE her numbers were 10/20. So we have to remove bananas and squash from her diet. The doctor is letting Tinleigh keep Enjoy Life Chocolate chips because they are just cocoa. We are going to pull these 2 foods from her diet for two weeks then she will trial oranges and sweet potatoes. Tinleigh will get scoped at the same time as Gage.
For both Tinleigh and Gage if they have high numbers at their next scope we will have to dial things back and get them to a clear scope before we can continue to move forwards. So i’m really praying things straighten out for them these next two months.
We’re very happy with how things are going for the kids. A little sad Tinleigh has to take away bananas and squash but she still gets to move forward. It’s all just part of how crazy this disease is.
Today I want to challenge you. I am going to list what my kids can eat and I challenge you to eat like them for the day or the rest of the week!
1. No cheating, obviously
2. You can’t eat out. You have to pack a lunch and snacks for the day.
3. You still have to cook a regular meal for your family while you eat only these foods. Cooking two different dinners will give you a feel for how it is in our house.
4. If you fail you donate $10 to CURED
Charlie – these are the foods Charlie can not eat.
shellfish beef chicken turkey
peas egg mustard soy sesame
all melon pineapple banana mango
frog legs deer all nuts
Gage – these are the only foods Gage is allowed to eat
rice tapioca cocoa green beans
oranges limes lemons blueberries
olives strawberries cauliflower
olives blueberries enjoy life chocolate chips
For those that are new to our family Gage and Tinleigh also have a feeding tube for their main source of nutrition.
I challenge YOU!
Consider donating $1 to CURED if you succeed in honor of these kids!
The only way we’re going to find a cure is for research to happen.
The only way research can happen is for everyone to donate. Even a dollar. If all of my friends donate a dollar it adds up quickly and every little bit helps!
Here’s our video from last year. EOE
DONATE HERE in one of the kids names! CURED 100% of your donation goes to research.
Do you know what else your $1 or more donation will help.
It will help my kids be feeding tube free.
It will help my kids be able to eat more than 10 foods again.
It will free up my time from cooking to spend more quality time with the kids.
We will be able to travel places with out packing 20 different bags of food and formula.
It will help lower our monthly grocery bill which is over $1000
It will greatly reduce our hospital bills which are ridiculous.
We will have more money and more time to do the things “Normal” families do.
My kids immune systems will be healthier and a basic cold will stay just that, a basic cold.
Our kids will be able to have a family of their own with out being scared they’ll pass on the disease.
You’re $1 or more donation will do more than you realize.