Asthma and Allergy: My Experience
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It all started on a hot summer day, June 2/89 when my son was born. Jon was not a happy infant - in fact when he first smiled at the age of 6 weeks I cried because it was the first sign of happiness that I had seen. He was very fussy and seemed to have a lot of gas. He also had eczema. When I visited the pediatrician for a six month check up she told me that Jon would likely be allergic to milk because of his eczema. I just laughed to myself, but unfortunately she was right as I discovered the first time that I tried to give him cow's milk at the age of 10 months. He instantly broke out into hives wherever the milk touched his skin and soon he had hives all over his body from what he had ingested. This incident started us down the path of discovering food allergies.
Fast forward to the summer of 1991. Jon awoke, late for him. When he came downstairs it was as though he had run a marathon. He was out of breath and just wanted to lay around. It was a foggy morning, and there was construction going on behind our house, and all of the fumes of the machines were being held to the ground by the fog. It was bothering me as well, but I did not connect this to Jon's problem. I called my family doctor and got an appointment for later that morning. Jon was having real trouble when we left for the doctor's office. She was running late, as usual, and after waiting an hour in her office Jon seemed totally fine. I was embarrased as I went in to see her but explained what he was like at home, and she said it was bronchospasm and gave us an inhaler and sent us home. She described bronchospasm (not labelling it asthma), and I came to realize that he had had this problem before. He had had bouts of wheezing and coughing, but I did not realize that it was this serious. Our journey into the world of asthma had begun.
Jon developed allergies to milk, eggs, peanuts, cashews, almonds, peas, beans, palm kernel oil, coconut, dust, mold, pollens, ragweed, and animal dander. We have also been told to avoid apple, pear, peach, plum, bananas, sesame seed, and sunflower seeds as Jon gets a very itchy mouth with all of these. You never know when the reaction will go beyond just his mouth. He has had reactions such as hives, vomitting, loose stools, eyes swelling shut, runny nose, itchy eyes, itchy mouth, stuffy nose, and asthma attacks. These reactions come from both food and some environmental allergies. He is very sensitive to any kind of smells such as smoke, perfume, cleaning products, manure, even food cooking. It is a real challenge to figure out what is causing his problems at any given time. We are very limited to where we can eat out and even visit- it seems like everyone has pets. The dander from pets causes his asthma to flare up. Even dander on people's clothes can bother him. My mother has a cat and a dog and when she comes to visit she causes Jon's nose to run and his eyes to itch just from the dander on her. Maybe if you think you are allergic to someone you should see what kind of pets they have.
My purpose in creating this page is to share some of what I have learned in the hopes that someone else's journey might go a little smoother. When Jon first had asthma, I thought that it was wheezing, that you took your puffer and that was the end of it. I now know that it is a disease where inflamation plays a huge role. Jon can have a small exposure to something and seemingly come through it just fine, that is until a day or two down the road when the cough starts and even with medication can take weeks to clear. At first he was put only on a bronchodialator, and he had many chest infections and two bouts of pneumonia by the age of four. He was on antibiotics alot. We had to go to the ER to get a diagnosis of pneumonia the second time it happened and saw a different doctor there. He is the one who first put us on an inhaled steroid. He told me to use it throughout the recovery of the pneumonia, and after that start it again at the first sign of a cold and throughout the infection. It changed our lives. No more pneumonia or chest infections since. With the use of these inhaled steroids we have been able to keep Jon's asthma under good control. Unfortunately due to the number of allergies he has, he never has a good time of year and he has required daily doses of inhaled steroid to keep him well. It is scary to have him medicated so much, but the alternative of having him constantly coughing and sick is worse. Most people, to look at Jon, would have no idea that we have so many problems but that is because his asthma is fairly well controlled.
Some things I wish I didn't learn the hard way:
1) vomitting as an infant can mean food allergy- keep a log of when it happens and see if a link can be found
2) wheezing and a cough that hangs on long after a cold could mean asthma
3) inhaled steroids don't need to be feared- when needed they are a God send
4) always carry your inhaler and/or Epipen with you- you can never predict where they will be needed
5) my baby was so fussy and unhappy because I was eating all of the foods he was allergic to while breastfeeding
6) there are often many words that mean your allergy in an ingredient list that don't sound like they are
7) not all doctors give good advice where asthma and allergy are concerned - follow your instincts as you know your child much better than the doctor. If the advice seems poor, seek a second opinion.
8) always carry along safe food for your child, they may not be able to eat what everyone else is eating but they won't have to sit and watch others eat with nothing for themselves.
9) read every label, every time- manufacturers often change ingredients without warning. At first grocery shopping takes forever but as with any skill you get good at it.
Personal Horror Stories
Picture this. It is the first time that we are invited to our neighbor's house. They want to show us their new finished basement. Jon is about 2 years old. Before we went over I decided to give Jon some apple raspberry baby food fruit because he was hungry. We went over and were happily visiting. They had a container of peanuts sitting out, and Jon asked if he could taste one. At this point we had no idea that he was allergic to peanuts so we said yes. Jon took one bite of the nut and, all of a sudden, I asked Jan if her laundry tub was through the doors at the end of the room. She looked at me as though I was crazy but said yes. I yelled at my husband to get Jon there-NOW! He did not move immediately, so I said it again and this time Paul and Jan ran, although they had no idea why. They barely made it to the laundry tub and up came all of the apple raspberry (wouldn't that have looked lovely on their new carpet) and the peanut. Jan asked how I knew, but I could just tell by the look on Jon's face. Suddenly a light went on and some of the strange occurences that had happened with peanut butter cookies started to make sense- Jon was allergic to peanuts. This was later confirmed, not only by the allergist, but once when Jon was playing in the back yard of my inlaws with his cousins. I was told Jon was not feeling well, and one look at him told me he had been in contact with an allergen. His eyes had hives all around them, his nose was runny and he was starting to cough. I asked, "What have you been into?" and he said that he was playing with the peanuts in the bird food. I said, "You know that you are allergic to peanuts." He replied he thought only if he ate them. Good lesson learned- don't even touch.
We were once invited to a friend's house for supper. Of course, I quizzed him on food so that I could bring things appropriate for Jonathan as needed. He said that the menu would be mashed potatoes, vegetable and roast beef. I said that sounded great and I would separate a potato out for Jon and mash it milk free. When we got there I went into the kitchen to help his wife get supper on the table, and to my dismay, there was no sign of mashed potatoes, plain vegetables or roast beef. I started asking Mary what was in some of the dishes and there was not one free of milk. I asked if her husband had mentioned Jon's allergies, and she said only the peanut one. Finally, we found some milk free bread and that was all that Jon had for supper that night. It was difficult for all concerned.
One day I decided it would be a lovely day to go to a park in a neighboring town. This particular park had a nice wading pool for kids, so Jon went looking forward to a "swim". He would have been 5 at the time. I monitor his asthma with a peak flow meter, and that day he was doing well. I did not take his inhaler with us. We walked up a small hill to the wading pool, and Jon began to paddle around. Within a moment or two, he started to choke. I assumed that he had swallowed some water, so I watched to make sure that he was alright. He kept on choking, so I said, "How much water did you swallow?" He said that he had not swallowed any, and I yelled at him that we had to go. I realized that it was his asthma. By the time we got to the bottom of the hill, he could hardly breathe. We got in the car, and I did not know where the closest hospital was, in my town or the next one down the road. I decided to head for home, knowing that sometimes getting out of the environment will really help. It was a very long drive, trying to keep Jon calm (he thought he was having a heart attack), and picturing newspaper headlines like "Stupid Mother Doesn't Bring Inhaler and Child Dies". We made it home, but believe me, we don't go without our inhaler anymore.
I have learned, the hard way, to take an antihistamine with us wherever we go as well. Jon has had his eyes swell from getting close to a llama, and also from some tree that was pollinating. You guessed it- I did not have his antihistamine along, and he had to suffer. I did have the puffer though!
There was also the time that a friend of mine came over to help us set up our Christmas tree. All was progressing nicely until Jonathan accidentally stepped on the base of the artificial tree and broke it. Our tree would no longer stand up, no matter what we did. I called my mother to see if she would be using her stand and she said that she wouldn't be, so my friend and I dashed right out to get it. When we got there we found that her stand only fits her tree, so she suggested that we take the whole tree. My mother has cats, but I figured how much dander could possibly be on one tree, especially since it had been in the attic for a year. We get this tree home, set up, and half decorated when Jonathan started to react. His nose started to drip and he started coughing. We all looked at each other and started to take the tree down. My friend and I returned mom's tree to her and went on a search for a new stand. Nothing could be found, except for the type that is for real trees. We decided that the things that screw in to hold the tree would probably work for an artificial tree as well. Wrong! We finally rigged it up with styrofoam in the bottom and extra tape around the stem of the tree so that it stood semi straight. What started out at about 9 am that morning, ended up at about 3 pm that afternoon, and it is a day that will not soon be forgotten. I think someone needs to invent a reusable plastic bubble that can totally encase a Christmas tree without hampering the view.
I often feel that children with problems the same as Jon's have a lot to contend with just day to day, so that is probably why it bothers me so much when adults are insensitive towards them. Jon had one teacher, in particular, that I felt could have shown some empathy. This teacher had "chance draws" that the kids could win a prize from. One day, Jon won the prize, which happened to be a piece of chocolate. This teacher, who was very familiar with Jon's problems, had to be reminded that Jon could not have the chocolate. He gave Jonathan a reinforcement (one of those things used to repair torn holes on binder paper) as the prize instead. Jon was puzzled by this and a little upset, but I wanted to give the teacher the benefit of the doubt and suggested that perhaps he could not think fast on his feet. About a week later this same teacher decided to give the whole class a piece of chocolate, and he said to Jon that he had something for him as well. Jon thought maybe a sticker or something. When it came time for Jon to get his "treat" he was handed an elastic. The other children laughed, and Jon felt hurt and mortified. What does a parent say when a child asks, "why is he doing this to me?" Since these incidents I have taken in safe treats for Jon to be handed out when it is appropriate. I don't know why this teacher found it necessary to reward with food, and even so, it would have been nice if he had come to me and I would have been glad to provide something for Jon before any of this had happened.
I think that it is very important to teach these children from an early age that they must be assertive in looking after themselves. Not all adults "get it". When Jon was in grade 4, his teacher decided one day that she was going to take the kids to the Humane Society. She did not send home permission slips, so there was no forewarning. When they arrived, Jon informed her that he could not go into the building because of his allergies. She had been given a full list of his allergens, so this should never have happened in the first place. She left him outside, all by himself, while everyone else went inside. It broke my heart to think of him, all alone outside, and I felt she had treated him no better than the dogs that they were there to visit. Apparently, a number of his classmates challenged him on why he was staying outside, even saying that they were allergic but were going in. One child, in the class, ended up swelling up and having to be sent home. If that child had shown as much maturity as Jon and made the hard, but correct decision, that would not have had to happen. I am very proud of Jon, as I am sure that it was difficult to stand up to an adult and then to stay alone outside.
When Jon was in grade 5, he had his first allergic reaction at school. In this particular class, he had had episodes of random hives, nothing serious, that just required him to wash the affected area until, one day, he came back from lunch, sat in his seat, and started getting hives behind his knee from something on the seat. He asked the teacher if he could go and wash his leg, which he did, but he also smelled his hand and thought it smelled like vanilla icing from where he had been scratching. Mistakingly thinking it could be something from his snacks that contain vanilla icing, he licked his fingers. He proceeded to get hives all over his neck and halfway up his face. The teacher did nothing, despite the fact that all his medications are at school, paperwork was all filled out giving permission to use them, and I had spoken to her in detail at the beginning of the year about medications, allergies etc. The teacher did recognize that the reaction was different from the previous ones because she asked him what his meds were for, but still she did NOTHING. Jon finally got out of his seat to ask her if he could phone home. She had not noticed his hand up and when he reached her the first thing she snapped was to "sit down, that she had not given him permission to leave his seat". He explained, and she did let him phone home. When I arrived at the school, Jon was lumping out right in front of my eyes and no one in the office was doing anything to help either. I immediately asked for his meds, and the teacher in the office couldn't find them. We are all so lucky this did not turn anaphylactic. The health nurse at the school (only there 2 days a week) helped the teacher develop a plan so that if this happens again, she will take action. I made a few recommendations as well- don't let anyone sit in his seat at lunch, ascertain whether he ingested anything before letting him go to the washroom alone to wash off (I'm sure the teacher had no idea that he had licked the offending substance). Needless to say I was very disappointed in her lack of reaction, and I will not take it for granted when speaking to the next teacher at the beginning of the school year. For any of you in the US reading this, you have 504 plans that can be filled in and I understand it is like a contract between you and the school, and it states what will be done for your child to accomodate allergies, asthma or other disabilities.
Allergies are so amazing sometimes. What I mean by that is that it seems that lightbulb moments keep occuring. My son, as mentioned before, is severely dairy allergic. Just touching milk has caused hives. He kept getting severe asthma attacks in a town not far from us, and I never really knew why. One day I was discussing this with a friend of mine, and she happened to mention that there was a dairy in that town. I didn't know if the problem could be related to the dairy or not since he did not have an attack every time we were there, but it had happened 3 times with no explanation. The last time that it happened, I noticed that there was a large cloud of steam rolling down over the highway and then up over the buildings that my son was in (it was very easy to see since it was winter and the air was cold). The steam was from the dairy, so I tried to find out if they release any dairy in their steam. The gentleman that I spoke with said that they did not when they were pasturizing, however, on the occasions when they dry the milk there is some particulate released into the air. He stated that they only dry milk once every week or two. I asked him to check whether they were drying milk on the last date that my son had a problem, and indeed, they were. I truly believe that that is the explanation for his asthma attacks in that town.
On January 18, 2002 Jonathan attended the birthday party of a friend. He could not eat anything they were having because of his allergies, and he had to wear a mask to protect his breathing because they have pets. All this he gladly did just to be allowed to participate. When he was coming home (a thirty second walk) he took off the mask and wiped the moisture around his mouth with the back of his hand. He knew he had been petting the animals, so that is why he thought to use the back of his hand. As he walked in the door I took one look at him and saw that his lips were starting to swell on one side. He ran and looked in the mirror and by the time he came out of the bathroom they were completely swollen. I administered his antihistamine and watched him for awhile to make sure that his breathing wasn't going to get compromised. Over two years later now and his lips are still swollen. We have seen a couple of allergists about this. The one believes that it is a complete coincidence that the lip swelling seemed to start with an exposure to his allergens. We have had a biopsy done and there are changes in the tissue. They believe Jon has a rare thing called Melkerson Rosenthal Syndrome. We were advised that he could have cortisone shots in his lips which Jon has declined. There is a leprosy drug which may coincidentally work on this condition, but the second allergist was unsure how safe it would be for someone Jon's age, and it is at least a 9 month course of treatment. The other option suggested to us was to see if it would resolve on its own. So far it has not. A study which the second allergist gave us showed that about an equal number of cases resolve on there own as resolve on the medication, and the mean time for resolution was 4 years. I guess time will tell.
Links to other sites on the Web
a great South African site- yes they have allergy too!
Food Allergy Survivors Together-another good email group plus much more
I hope that my story may help someone if they recognize themselves or a loved one. I hope it comforts, knowing you are not alone. My son is 17 years old now and I thank God that we have had room for error. Not everyone is that lucky. I made many mistakes along the way but he still lives to tell about it.
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