Allergic to the common cold?!?!- Part 3

In my last post (There’s something itchy going on…. – Part 2) about my son, DR’s mysterious hive reactions, we had finally got him an appointment to see someone at his allergist’s office.  It was Thursday, July 21st.  His appointment was later in the day, so I spent the morning trying to treat DR’s fourth outbreak of hives in that 10-day period, monitor for other signs of a serious reaction, and manage his paradoxical  side effects from the antihistamines I had given him.

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Doctor appointments are no fun unless you dress as a superhero.

By the time we got to the allergist’s office that morning he only had hives left on his legs.  We were brought back to a room quickly.  Within 5 minutes, in walked who I thought was the other doctor in the practice.  (Quick side noted:  days later I found out that this man was a nurse practitioner at the practice.  I normally do not have preference of being seen by an nurse practitioner or physician’s assistant, but with this particular office, I have heard some awful things about this nurse practitioner.  So when I had made the appointment, I had asked not to be seen by him, and was told we would be seen by the other doctor.) He began asking questions, not about his reactions, but about whether he had been exposed to a cold.  We did have our share of the common cold spread throughout our house, but that had been almost a month before.  I then tried to turn the topic back on our current issue of hives.  I told him everything that had happened those 10 days before the appointment.  I showed him pictures.  Unfortunately, he was so focused on this idea that my son was just having a reaction to the common cold, that he didn’t even do a full work-up.  We left with the diagnosis of a viral reaction, and directions to give him tylenol or ibuprofen if he developed a fever.  I was very confused, and friends, family, and school officials could not believe it.

Since it was Thursday, we had dinner at my mother-in-law’s house like we do every week.  I had given DR another dose of his antihistamine.  As usual, the kids would run around the house and play with the grandparents after dinner.  Then it happened, minutes after eating dinner, for the fifth time in less than two weeks, DR broke out in hives.  This time it covered his entire body.  As I sat him down to examine the hives, something new happened:  he started coughing, couldn’t catch his breath.  As his grandmother try to soothe him with water, I grabbed his Epipen and called our pediatrician’s office.  The nurse-on-call advised me to administer the Epipen and called 911.  So for the first time ever, I held my child down and jabbed the auto-injector into his leg.  He squealed and looked at me as though I had betrayed him.

The next leg of our anaphylactic journey would bring even more questions as we treated what we could, fought for a diagnosis, and made new discoveries in the crazy world of food allergies.

~Lacey

The Depth of Food Allergies

As with many issues that people may not deal with, food allergies can be viewed as a simple diagnosis and treatment.  For those of us who have children with food allergies, it is far from simple.  I repeat, it is not simple.  There are many aspects to consider:  testing for all possible allergens (food and environmental), changing diets, changing routines, educating others, constant preparation, hawk-like observation of all events and outings, managing doctor’s appointments and medication costs…..The list goes on.  Even though we’ve been dealing with food allergies for almost two years, I know I cannot finish the list as everyday presents a new obstacle to add to the depth of the issue.

As an example, I suggest you take note of the fact that the two mothers running this blog have not had time to update lately.  The reason being, so many issues going on in life that we barely have time to hold ourselves together, let alone share it with the world.  But today, I need to release some of the anxiety smothering me.  Hope knows what I mean, as do many food allergy moms and dads (and parents of children with other medical issues).

 

My most recent issue started last Monday as we were traveling from NC to GA.  We had a relaxing and much needed weekend visit with my family.  As always, I kept a close eye on my son, DR’s diet.  Since my grandparents do not have sunbutter (our favorite peanut butter alternative), DR ate almond butter and jelly sandwiches.  My grandpa who is on a special diet still had to eat some peanut butter sandwiches during the day, but we took big precautions, and DR was able to avoid any contact.

Twelve hours after we returned home, DR had a small rash developing on his legs and belly.  We rubbed him down with his topical steroids like normal, and in the morning he was looking much better.  Then it happened.  Daycare called and he was covered head-to-foot in hives.  We followed our protocol for this type of reaction by dosing him with oral antihistamines and topical steroids, covering him in clothing to keep him from clawing his skin off, and watching him like a hawk praying for the best, but expecting the worst.  The next morning he seemed better.  The next 9 days included a cruel repeat of the events three more times.

The second event was after dinner at my mother-in-law’s house.  This time it started on his legs and arms.  He screamed in pain at the itching in his legs.  We repeated our protocol, and I slept (laid awake and stared at him) in bed with him that night.  When our power went out due to thunderstorms, I just surrounded the bed in flashlights. As I laid awake, I went over the possible triggers.  He was nowhere near peanuts or eggs, but he did have exposure at least two times to almonds.  Maybe that was the cause.

The third event occurred two days later at daycare right after naptime.  This time it started in his arms.  He had only eaten the food we had supplied for him, food that he had eaten before.  My sister-in-law drove to daycare and gave him his prescription meds.  My husband picked him up early from daycare, and by the time I got home at 6:30, he was out.  This boy, who normally  only sleeps for 8 to 9 hours, was out until 7am this morning (minus a delirious 4am sleepwalking/talking event).  At this point, I had hoped that he was just experiencing a biphasic reaction from the second event.

Then came the fourth event today, just one day after the third.  He had not had lunch yet and his class had only been outside for 3 minutes.  He immediately started turning red and the hives appeared.  The daycare reacted by giving him the prescription meds (which are now in the directors desk) and calling me.

I know many people will read this and think, why doesn’t she call the doctor.  That is a story in itself.  He was already scheduled with his allergist sometime late-August.  At his first reaction, I called and asked to move the appointment up; unfortunately, his doctor is on vacation until the first week of August, and they couldn’t test for anything anyway until he has been free of antihistamines for a week.  So we scheduled him for August 5th.  After the second reaction I called, but nothing could be changed.  The day of the third reaction, I called his pediatrician’s office.  For some reason, all of the doctor’s are out of the office (is July doctor vacation month???) and they scheduled him an appointment with a Nurse Practitioner who told me she was uncomfortable seeing for him an issue like this and thought he should see an allergist (well, duh!).   So with his fourth reaction today, I called the allergist office and demanded he be seen by a different doctor.  We now have an appointment for tomorrow afternoon and wonder if they will be able to do anything to help him.

Throughout all of this, I also have to coordinate and care for everyday issues:  our 1 year old is teething, previous doctor bills are due, work schedules, vacation schedules, bosses who get mad for you changing the work schedule, family visits, household chores, other doctor appointments, meal planning, not crying in public when I see the daycare’s phone number, only to name a few.

And emotionally, I feel like I’m being buried further and further from a solution, from peace-of-mind, from sanity.  But I have to hide it, because if I break down, who will handle this?  My husband probably, but he’s currently dealing with same stressors and more.  So if you ever think that food allergy parents are overly-dramatic, overly-sensitive, or overly-complicate situations, first think about with which we deal.  Your judgement only adds to the depth of our problems, but your support (especially the emotional support) can help digs us out of the pits of despair.

~ Lacey

https://fromsouptonutsallergyfree.wordpress.com/2016/07/20/the-depth-of-food-allergies

Hindsight is not always 20/20: DR’s story

With most life threatening issues and mistakes in life, when we look back on them we can clearly see the cause and how it could have been avoided.  Unfortunately, many medical conditions like food allergies are exempt of this clarity, even after the fact.

For the first 18 months of his life, DR clearly had something going on.  He was sick every two weeks, constantly in and out of doctor’s offices, and sometimes admitted to the hospital.  His eczema only got worse with each flare, and nothing seemed to really “cure” it.  Doctor’s were unsure and sometimes baffled by his issues.  My husband, Justin, and I were exhausted and at our wits end.

When we finally found answers during our first allergist appointment for some of his problems we looked back to all we had dealt with and could not find a clear time when that had been the cause.  In these instances, the food allergies and their reactions were unavoidable.  The proceeding incidences due to the food allergy are ones that fall into the hindsight-is-20/20 category.  Once you know what to look for, mistakes become neon reminders of what you should have and could have avoided.

Hindsight with food allergies may not always be 20/20, but I can guarantee that foresight for a food allergy mom is even more calculated and precise.  Our knowledge of what goes into our children’s mouths, comes in contact with their skin, and is carried by others is so vast that we can catch almost any danger….almost.  Issues arise and the cycle repeats when new allergies arise for which we are unaware and unprepared.  You will see this many times throughout our posts, especially with DR and MH with their many allergies.

~Lacey

10 phrases allergy moms “love” to hear

  1. How allergic is your child?  When I tell someone my child has a food allergy, I’m telling them so that my child can avoid the allergen.  It doesn’t matter “how” allergic he is.  He doesn’t need the food, and we don’t need the agony of an allergic reaction.
  2. Is he really allergic or do you just not want him to have sweets? Of course I don’t want to constantly shove sweets down my child’s throat, but just because he can’t have certain foods does not mean I don’t let him have sweets.  Besides, why would you ask a mother (whether or not she has a child with food allergies) if you can give her child sweets?  Why can’t you offer my child an apple or even better a non-food item like stickers?
  3. I feel bad that he can’t have the same food as other kids.  I don’t want him to feel left out.  Most moms of children with food allergies come prepared with alternative options for their children.  While the children may feel a little left out from not getting to eat certain foods it is far better than the alternative of them eating the foods and having a reaction.
  4. Ugh…my life is so inconvenienced by your child’s food allergy.  Why do daycares, schools, airplanes and public buildings have to be peanut free?  First, if you seriously can’t wait until you get home to eat your peanut items, then maybe you have a bit of an issue?  Second, the severity of some allergies like peanuts differ from person to person.  Some people react just by touching an item that someone who had peanuts earlier touched.  It’s like with the flu.  If you have the flu virus you shouldn’t be bringing it out into public where it can hurt others.  Just keep your peanuts and your flu at home and to yourself.
  5. How long has it been since your child has tried this food? Maybe he’s built up a tolerance.  Yes, some people may grow out of their food allergies, but some of them may get worse.  Currently, there is no way to know either way.   There are some research efforts underway to see if there is a cure for food allergies.  No, we will not test his tolerance right now in a non-medical environment without his doctor’s consent just because you want to see if he reacts.  I can tell you that I am probably losing my tolerance for you.
  6. You must have eaten too much of that food during your pregnancy or while you were breastfeeding! You must be ignorant. Thank you for blaming me for my child’s medical condition though. Bless your heart. Do your own research and know that we blame ourselves enough for our children’s reactions without others trying to blame us too.
  7. Giving them a little bite won’t hurt. Right, and neither will letting them hold a rattlesnake. To allergy moms those two things are equal. Both could kill our child. Let me say that again to make it clear: ONE BITE COULD KILL MY CHILD. I’m not willing to take that chance. You shouldn’t be either. Killing people is frowned upon last time I checked.
  8. Oh, they’ll grow out of it. We actually want this. We desperately want our child to grow out of their food allergies. For them and for us. Unfortunately we don’t know if that will happen. Neither does my child’s allergist. I’m so glad you know though.
  9. It was processed in a plant/on a conveyor belt/on a counter top with the allergen, but it doesn’t have the allergen in it.  It should be safe. If it wasn’t potentially dangerous, then why do the products have to tell you they were processed near the allergen?  What if your favorite food item said processed by someone who had the flu or TB?  Would you feel comfortable chancing contamination?
  10. This one we will never hear said to our face. We’ve heard others say it about other allergy moms when they don’t realize we are listening or don’t realize we are also allergy moms. They’re just doing it for attention, I doubt their child even HAS a food allergy. Don’t be this person. This person is not a nice person to be. Please know that we are not seeking attention. Most of us HATE having to ask what ingredients are in everything when we are at a restaurant, a person’s house, on vacation, etc. I don’t like inconveniencing people. I hate it. I’m a southern girl to my core and I love making people feel at ease. I’m way out of my comfort zone when I have to seek people out to ask questions. I will do it for my child’s safety EVERY SINGLE TIME no matter how uncomfortable it makes me. I can assure you if I could take it away from them I would in a heartbeat.

This post is not intended for people who genuinely care about our children’s safety. If you are asking us questions that are intended to really help our child or if you are wanting to know details so that you can make them or give them a safe treat we welcome that. We always know your intentions as soon as you speak though. We can tell when you are a caring person and when you’re just trying to be a busybody or a tush.

~Hope & Lacey~

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“D”

imageAfter Z grew out of his milk protein allergy and his allergy induced asthma we put him on lactose free milk to keep his digestion running smooth. We thought that things were FINALLY normal for us!!! After four years of craziness our lives calmed down for the most part. We still have to keep him away from horses and cats but he’s totally normal now.
During this calm normal food period my kids enjoyed peanut butter and jelly for lunch often without a single thought. We enjoyed eggs for breakfast and sometimes for a quick dinner when my husband was working. I baked with eggs every single day. I have always loved to bake. I still love it!
I never had to put any thought into what I was feeding them other than making sure they had proper nutrition. I’m a meal planner, it saves my family a lot of money and aside from making the menu itself and cooking the food that was all that I had to do. Yes, it was a pretty big job for me as a ( then ) mom of three but it was enjoyable. Then I had “D” right before MB turned 2. His birth was scary. He had distress towards the end and the doctors thought he had swallowed some meconium. We had to wait on a team of specialists only to have them walk out the door as soon as they heard the very loud cry he was belting out of his perfectly clear lungs. Up to that point all of my labors and deliveries were very nice experiences with only one small cord issue during Z’s delivery. After he came his life was simple and sweet. We enjoyed having our wild and stubborn little man! I waited until after he was one to feed him any nut or egg products and after he had them he was fine. No issues! Then one day when he was about 15 months old during a snacky lunch when we had veggies, nuts and popcorn, D started breaking out in hives. At this point aside from my own grape allergy as a kid I had never dealt with a food causing this type of reaction. I did know what it was right away because of Z’s animal allergies though, so we gave him Benadryl and he was fine. Cashews were the culprit. A few months later pecans caused another reaction. Peanuts never bothered him. So we still had peanut products in the house. His allergy to tree nuts is a hives only reaction at this point but we always stay away from them to be safe. When D was 8 months old we found out we were expecting baby number 5!!! She was born when D was 17months old. She is our whirlwind baby. With her, things have always been crazy, scary and fast. Her story will take more than one post. MH turned 2 on the 22nd of May. Her short two years have been more eventful than most people ten times her age. She is my fighter.

~Hope

Egg-zema

When DR was four months old we noticed a small, red, scaly patch on his cheek.  At his check-up, the pediatrician told us it was eczema.  We were advised to keep it moisturized.  This was in August in the mountains of NC.  The weather up to this point of his life had been sunny and warm.  We were not at all prepared for what happens to eczema during the dry, frozen days of winter.

As the winter approached, DR’s eczema got exponentially worse, spreading to his hands, arms, feet, legs, back, torso, and the rest of his face.  The only part of his body that was not affected was everything covered by a diaper.

He celebrated his first 6 months of life in October, and we began feeding him foods.  Still the eczema spread and worsened.  We were told at that check-up that food allergies were a possibility due to family history of allergies to tree nuts and peanuts; however, they wouldn’t test for them until he was a year old or had a severe reaction.

Before his first birthday, DR had two different hospital admissions due to dehydration from normal childhood illnesses.  This caused his skin to worsen to the point that it was literally peeling off.

At this point, he had several rounds of oral and topical steroids and antihistamine.  No matter what we tried, though, there was never complete relief.  Due to constantly having to use these medications, we could not see an allergist.  Finally, when he was 18 months old we made it a week without medications and met with an allergist.  At this appointment we discovered his egg allergy.

From that moment forward, we cut egg from his diet as best as we could.  When he accidentally had an egg product, his rash would flare up.  However, cutting it out completely did not rid him of all the eczema.

In an attempt to make it better, we made the decision to move to Savannah, GA where the temperatures are steady and warm year round and the salt water in the air is considered healing.  After a couple of unexplained flare ups, we went in for another allergy test. We discovered his peanut allergy, so we cut that from his diet as well.

His skin is remarkably better now, with flare ups fewer and farther between.  We have hope that vigilance on our part and the possibility of outgrowing the allergies will end his eczema for good.  Who would have thought that something like a food allergy could impact another medical issue so much.

~ Lacey