Preparing your child with allergies for surgery

As a parent, preparing a child for surgery is tough. As a parent of a child with many allergies, preparing her for surgery is not only tough but also scary. How will she respond to anesthesia? How will she respond to the instruments used? How will she handle the materials being inserted into her body? How will she handle the hospital bedding, clothing, food? So many questions and concerns to handle before she goes into the surgery.

Recently  my daughter needed to have double leg surgery. The surgery was required to fix her severe knock knees which was already causing physical issues and would only get worse with time — from arthritis to severe joint, back, knee and foot pain. We were fortunate that we caught her situation before she stopped growing so the surgery was less traumatic than it might have. But it was still surgery. And as her mom, I was still nervous.

Like all problems, they can seem daunting if you try to deal with them all at once. So break them into manageable pieces. I broke my preparation for her surgery into medications, materials and post-surgery/hospital stay.

I worked with the doctors before the day of surgery and on the day of surgery, to review all medicines (anesthesia, pain medications, etc) and ensure that none of them were either made with or made in contact with her severe allergies. There were some medicines that they took off of her chart and replaced with others – so this is a very important step. I also told everyone who came into contact with her that she had allergies and I ensured they were listed on any paperwork, charts, etc.

Regarding the materials, we worked with the surgeon’s office to understand what materials would be inside her body. (She was going to have plates and screws on the growth plates in both knees). With that information, we worked with the allergist to have skin patches made which our daughter wore for days prior to the surgery. Every few days we visited the allergies and dermatologist to ensure she wasn’t having any reaction to the metals. We were lucky – she didn’t have any reactions.

In terms of the hospital stay, I asked the hospital what I could bring with me. Since my daughter is allergic to most fabrics and detergents, I had permission to bring in her own bedding and clothing to wear in the hospital. They gave me advice on what that clothing style should be. I also asked what types of food she would be able to eat post surgery and I packed in a cooler all of her food. As it turns out, we were lucky at Children’s Hospital in Boston because they actually put all of her allergies in a system which won’t even let you order any food that contains any of her allergens. But if that hadn’t worked out so well, I had plenty of food with me in a cooler.

TIP: As a parent of a child with allergies, we prepare for everything…. we over prepare for parties, for vacations, for school trips… Preparing for surgery is no different. Preparation means a better hospital experience and a calmer, less scary situation. Just remember, preparation can be daunting – so break it into categories or steps and tackle one at a time!

 

Missing school due to allergies

My daughter Morgan misses many more school days than other children. Her absences are due to allergic reactions and / or her severe eczema. Our agreement with the school is that we have her on a medical plan at school. I highly recommend this for all parents to consider if this option is right for their child. How does it help our daughter? Morgan wants to do well in school. She wants to do her work and be in the classroom. But when she misses several days in a row in a week, these absences create more stress and guess what – stress can be a trigger for new or continued eczema flares. So it can become a vicious circle. With her medical plan, it is agreed that she can take the test or the quiz later – when she’s better. It also means that she can miss more school than is permitted for children not on medical plans and still progress to the next academic year. It also generally means that she can go get extra help from her teachers as well if needed. We’re fortunate that we are in a school district full of caring teachers so Morgan is thriving in school, even with her restrictions.

TIP: Bottom line for parents – know your rights to help your child do the best they can in school. Request a medical plan to help your child if their allergies or eczema means they miss a lot of school. And mostly, of course, ensure your child knows that you are there to support and advocate for them and that as they get older, you push them to do more and more of the advocacy for themselves.

Children with allergies and eczema and school field days

My daughter has severe food and environmental allergies and her body responds in a variety of ways (dependent upon the allergen) from anaphylasis to eczema to EE (Eosinophilic esophagitis) to gastrointestinal issues to asthma. She is in fifth grade and in our town, all fifth graders have a special week in June, called Fifth Grade Camp. The children look forward to this week — with ziplining and boating and arts and crafts… and of course no homework!

We prepared as we normally would by filling out school forms, preparing her medicines as well as having ots of discussions with our daughter to ensure she was ready. BUT – we hadn’t thought of something….the pond water that they fall into after ziplining…  and the fact that there are no showers to rinse off in! Generally I think of ourselves as always prepared, always asking all the important questions… but this one escaped us. 

At the end of the zipline, the kids fall into the pond. The pond was filled with pollen and there was no way for our daughter to rinse that pollen off of her body. So tonight, she is covered with hives, extremely itchy and uncomfortable and at this point, we are not sure whether she will make it back to camp tomorrow. Of course we’re treating her with her medicines and salves and we’re keeping our fingers crossed that she won’t miss out on tomorrow’s fifth grade camp fun!

TIP: You never know what questions you don’t know to ask. It’s probably always smart to ask to speak to another parent of a child with similar allergens if you are about to experience something new. That child may have not responded the same way as my daughter did and we could potentially still be in the same situation we are in….but I think it’s something I’ll do in the future.

Visting Mexico with a child with allergies

A while back, we traveled internationally, visiting Mexico. This was our 3rd year taking our child with allergies on a vacation out of the country. Morgan has allergies (including nuts, peanuts, eggs, legumes, soy, oats, dairy, sesame, sunflower, citrus, shellfish, fish.) Similar to prior years, I packed one suitcase of frozen foods and one suitcase of food staples as well as a toaster oven. Between the two suitcases, I had her breakfast, lunch and dinner for 8 days. I also traveled with a mattress dust protector, pillow dust protectors, sheets, towels and blankets since my child also has a number of environmental allergies. Of course, I also travel with all of her medications.

Some friends and colleagues wonder why I go to so much trouble and I know many parents of children with allergies who will not travel with their child because it’s too scary. I understand all of that, but I believe that the key is to figure out what your limits are, what your child’s limits are and if you can prepare for the vacation in such a way that you feel comfortable. The joy my child experienced this trip (and previous ones) is so worth it. We’re trying to give Morgan the most normal upbringing we can. She gets angry and frustrated when she’s excluded from doing things because of her allergies. Also, amazingly at a very young age, my daughter had such a strong sense of her body and knew to seek help and advice before eating anything. Admittingly though, I only travel to resorts and I stay in the same location for the duration of the trip – I would not be comfortable traveling with her in Mexico or anywhere else for that matter where we had to become familiar with a new environment every day or so. That is where my limit is.

This trip I also traveled with an allergy card in which on one side I had written all of Morgan’s allergies in English and Spanish on the other side. I handed this to the chef in every restaurant and they were incredible. Even though I had brought and prepared at home all of Morgan’s meals, she was able to eat almost every meal every day in the restaurants because the chefs read the allergy card I brought with me and prepared special meals for her. Morgan had a ball – she loved eating “what everyone else was eating” and not having to eat out of her lunch box everyday.

TIP:

Although I would highly recommend the resort vacation, it’s important to know that the refridgerators are small and the ice machines sometimes don’t work every day. Because of this, we travel with Morgan’s food in hard coolers so we can fill them with ice each day that ice is available thereby keeping her food from going bad. The true key, though, is to travel with an allergy card in the language where you’re traveling. I used an online translation service and then verified the translation. The chefs definitely understood her allergies and took them seriously. I also included key environmental allergies, like latex, on her card so if something were to happen while we were traveling the doctors there would know of her other key allergies. I also made a laminated letter-sized document which stated in English and Spanish that they shouldn’t change the bed because my daughter has allergies and needs to sleep in the bed linens brought from home. Lastly, I traveled with a doctors note (copied numerous times) which stated that Morgan has allergies and needs to travel with medications and food. On this note, all of her medications were listed. I carried the original note with our passports and then put copies in every suitcase that had food or medications in it in case my suitcases were searched. With this note, I also included a note in Spanish that stated similar information.

If you can prepare yourself, your child with allergies and your family so you’re comfortable and safe, it’s amazing to see the excitement and pleasure in their faces. My daughter loved every day and felt like every other kid almost all the time. Yes there were the times when she was sad watching all the kids eating icecream by the pool, but that is something we deal with every day at home – helping her handle the sadness, frustration and sometimes anger. Because of this, it makes me even more determined to give her the most normal upbringing we can and the smiles she has in all of our pictures are the permanent memories that she had a fantastic time!

Children with allergies and eczema – and their need to control!

My daughter who has numerous food and environmental allergies and eczema often struggles with feelings that she has no control. Sure she can control what she eats, but she can’t fully control what other people eat around her nor can she control if it will be too hot or too cold for her to go outside or whether it will snow or whether flowers, trees, grass will be in bloom. In other words, there are so many factors that control how she feels that she herself can’t control. In order to give her more control, we let her make as many decisions that we are comfortable with her making, at her age. We provide her with all the information she needs to make an informed decision, teach her how to gather the information herself and then we ask her what she would like to do. Any child, like mine, who has suffered from life-threatening reactions and from what she considers to be embarrassing eczema flares, does not want to go through those reactions again. It’s definitely hardest when all her friends want to do something she shouldn’t do, but we manage through those situations with her together as best we can.

TIP: Help your children control what she can control while keeping her safe. It goes a long way in her / his feelings of control.

Children with allergies & Birthday parties – with planning can be fun

Birthday parties are always difficult for us – since our daughter has so many food and environmental allergies. But all the extra legwork we do BEFORE the party means the day can be enjoyable for our daughter. If the party is in a home, I talk to the parents to fnd out if there are any animals and what food will be served. IF there are animals, I talk with the parents on whether the party is indoors or outdoors, what kind of animals, what amount of exposure the animals have to the space where the party will be held and then my daughter and I talk and make a decision on whether or not she will attend the party.

If the party is in another location, I call the location ahead of time – talk to the kitchen about the food and the environment (are there peanuts, nuts, how do they cook the food that will be served, what food will be served, is there latex, are there animals… etc – I cover anything that might impact my child.) I also, of course, talk to the parents hosting the party so they are aware. Then,once I’m armed with all the information, my daughter and I again sit down and talk about how comfortable she feels – would she like me to take her to the party? stay at the party? be near the party so I’m only a moment away? It really depends on her comfort level  – that determines how we approach the party.

We’ve spent my daughter’s life trying to ensure her lifestyle is as minimally affected as humanly possible. Yes, she’s affected everyday. But by focusing on the details, we can turn what could be a stressful or even harmful situation into a fun one!

TIP: PREPARE PREPARE PREPARE! It’s worth it!

A bad restaurant experience for my daughter with allergies

This past Feb, we decided as a family to vacation in the States. The past several years, we have traveled internationally and the prep work in getting everything ready for my daughter with allergies can be daunting (packing all the food, sheets, towels, medicines, etc). So we chose Florida this year and we were so relieved to know that if we forgot anything, we could find a store where we could buy her food, her laundry detergent etc.

But our first night on vacation, we went out to eat since we had arrived late and we were all hungry. Like everytime we go out to eat, we reviewed my daughter’s allergies. They assured me that all would be okay. They brought my daughter’s food and she had an immediate anaphylatic reaction. What shocked me more than anything is that the waitress never asked us if we were okay. As we were rushing to get in our car and go to the hospital, not one person asked if she was okay or if they could do anything to help — not the waitress, not the manager. All the waitress did was bring us our bill for a table of 6 people. None of us actually ate any of our food, as we had to rush out to the hospital, but they made sure we paid our bil!

I was honestly horrified! The waitstaff was so poorly trained – were they trained at all? This experience was the worst we have ever encountered. I won’t post the restaurant name here but if you’re visting Sarasota, FL and want to know what restaurant to avoid – please comment and I’ll send you the name.

Getting ready for public school

Like all families with children with allergies, the day arrives when you need to prepare your child, yourself and the school for your child to enter school. As we prepared ourselves for public school earlier this school year, we realized how easy it had been in day care, relatively speaking. The daycare we used was nut-free and in fact made her classroom free of anything she was allergic to. She was not excluded from anything – kids didn’t eat foods near her that could be dangerous to her and the school didn’t do any projects that she couldn’t participate in.  

It’s been a shock in many ways to have moved into the public school system. We’re fortunate in that our cafeteria doesn’t serve nuts or peanut butter. BUT, any child can bring peanut butter for lunch. My daughter has to sit at a nut free table. She can ask a friend to sit with her but they have buy lunch in the cafeteria in order to sit with her. Initially at the beginning of the school year a friend would sit with her —  now they want to sit at the regular tables with everyone else. Luckily for my child, she has found a friend from another class who likewise sits at the allergy table. They’re in different grades so I wonder what will happen when they’re no longer in the same school. For now, though, my daughter has the occasional dream in which she goes to school and there’s an additional allergy table, and another, and another until the whole cafeteria is only allergy tables.

My daughter’s class is relatively small (16 children) and we’ve been fortunate to have a fabulous teacher and lots of mothers who are sensitive to Morgan’s allergies. I became the class party mom so that I could develop and manage the class parties. Many people who are not close to children with allergies don’t realize the impact on children when they are excluded because they can not participate in an activity or eat the food that all the other children are eating. Although I am always appreciative when some one makes the effort not to have foods that are dangerous to her, they often stop there and serve mostly food that she can’t eat – forcing her to feel excluded. Being the party Mom has permitted me to plan the parties and the foods. The other families I have worked with for the parties have been wonderful and understanding and so far this year, my daughter could do everything and eat everything at the parties we’ve had.  This has been wonderful for her!

 Tip:

As a parent of a child with allergies, there are some things that are out of our control and many things that we can control. I try to control those things that I can, such as being the party mom for her class. By taking charge in this way, I am able to control her environment. Morgan becomes sad when she feels excluded, like many children with allergies. By planning the parties myself, I know the party will be as fun for her as it is for all the other children.

It takes an extended family to raise a child with allergies

For me, the learning curve around my daughter’s allergies went through several stages: shock (I can’t believe she’s allergic to all of these foods and environmental factors), guilt (what did I do when I was pregnant with her that I should have done differently), knowledge seeking  (how can I learn everything there is to know about this), knowledge sharing (how can I best educate my extended family and closest friends so that I can broaden her world safely) to acceptance (we’re in this together and we can handle it). As I moved through this learning curve, I have been able to extend and broaden my daughter’s world. When we first learned about our daughter’s allergies, we felt all alone – we didn’t know where to turn, we didn’t know anyone who knew how to help us and we knew nothing! We spent the first months / years learning as much as we could – we attended local allergy meetings, met numerous doctors, read a lot and talked to anyone we could.  Eventually, we reached a place where we realized we knew more about dealing with allergies than many people we met and we could help others help themselves if they’re dealing with similar issues and we could help our families help us!

Until we reached the stage that I call knowledge sharing, we would sometimes become frustrated with our family — why did they buy that dessert with nuts in it? why are there eggs on the counter? why did they plan a family dinner menu with peas in it? We knew they knew about Morgan’s allergies and we knew they cared, but initially we didn’t understand why they would offer foods that were dangerous for Morgan. Then, we finally realized that just as we were once ignorant about dealing with allergies, they were as well. We had been focused on educating ourselves but we had failed to educate them along the way.  That’s when we entered the Knowledge Sharing stage — we now knew enough to help them help us.

Today it is a very different situation. Our extended family has been wonderful making their worlds not only safe for Morgan but also very inviting. Never do we go to a family member’s home and encounter foods to which Morgan could have an anaphylactic reaction.  Rarely do we even go to their homes for dinner and find something served that she can’t eat.  And on the occassion when something isn’t right, we simply let them know because we have accepted Morgan’s allergies and we know that as hard as it is for us to monitor food and their ever changing ingredients and labels, it’s even harder for our family members who aren’t grocery shopping every week for a child with allergies. We know we are very lucky – Morgan’s Grandmom Norine, Grandad Bud, Pa Wayne, Nana Shirley, Aunt Cam, Uncle Chuck, Aunt Margaret, Uncle Matt, Nana Laurie and Grandma Barb are the best at ensuring Morgan is safe and that she never feels excluded from any family gathering due to food — they have helped extend and broaden Morgan’s world.

Tip: Broaden the World for your Child with Allergies by Extending the “Safe Zone” to those Closest to You:

When you have a child with severe allergies, the world can seem scary and your primary objective is to ensure that  your child’s world is safe. To do that, we sometimes insulate our child and make her/his world small so it feels manageable. But this can be very limiting for your child. To broaden your child’s world, it’s easiest to first extend the “safe zone” with those people closest to us. To do that, I believe it’s important that you follow the 3 R’s: 1) you constantly reinforce the importance of keeping the environment safe, 2) you remind them of the allergies and the symptoms and 3) you remember that it’s your own responsibility to educate them & share your knowledge – as a parent with a child with allergies you will always know more than anyone else about your child’s allergies. By broadening this world, not only is the world richer for your child but you are can also breathe easier knowing that there are now more people in the world who can safely take care of your child when you can’t be there.

Creating a social yet safe environment for your child with allergies

When I started playdates for my child with severe food and environmental allergies, I had friends over to our house only. I felt that I could control our environment while I couldn’t control the environment in other locations. Prior to other children coming over, I always reviewed the foods that were not permitted in our household (nuts, peanuts, eggs and peas.) I know my child missed out on many playdates without Mom because her friends’ parents were nervous about the responsibility of having her alone (which I completely understand) or because I was too scared. It was a momentous occasion when she was invited to her first friend playdate at a friend’s house without me staying the whole time. Ironically, this first play date was at a friends house who doesn’t even have a child with allergies. But, the mother had taken every precaution — didn’t allow her children to have any food dangerous to my daughter that day, informed her children of the food they couldn’t have while my daughter was there and reviewed everything with me (food, medicines, etc) in detail. She confessed that she was nervous, but we worked together until she was comfortable and then I left my daughter there for an hour. The result of this playdate: my daughter felt so wonderful — she felt independent, “grown up” and happy. The dismissive wave of the hand that she gave me when it was time for me to go comforted me that she felt safe, ready and thrilled to have her first play date without Mom!

PLAY DATE TIP

There are only a few homes where I will leave my child for a playdate without me. Factors that impact this decision include the parents’ understanding, appreciation and the care that they take to make my child safe as well as the environmental factors (or absence of them) in the home itself. Once I am comfortable leaving my child at another person’s home for a playdate, it is imperative that I make the host comfortable and that I ensure my child’s safety. To make the host comfortable, I only let my child eat food that I bring to the house. When packing food, I pack a variety of items and always try to bring enough of everything so that her friends can eat the same food she is eating. Prior to the visit, I talk to my child about what she should do if she has a reaction while at her friend’s house when I’m not there – to let the mother know if she feels itchy or has difficulty breathing. Prior to my leaving the friend’s house, I spend enough time with the parent(s) to review use of the epi-pen, benadryl and her lotions. I also always review her allergies and the food that I have brought for her to eat.  After the playdate, I ask my child how the play date went and often congratulate her on taking such good care of herself and her skin.

Kathie Johnson