Talking Allergies

Last night, I went to my daughter's school for an information session about a trip to France the school is planning. When I got home and told her that the school won't allow me to go as chaperone (the school board has a policy of only allowing adults who have a teaching certificate), I said that I didn't know if I felt comfortable letting her go alone. The teacher told me that she could stay with her the whole time, but I don't know if she's qualified to deal with anaphylaxis, because yesterday in class she told the kids they were going on a field trip to Niagara Falls with possible stops at an ice cream parlour and a fudge shop. (Hello! )

My daughter then said she wasn't going to go to France, that it was a stupid trip anyway (which it isn't, it is extremely well organized). I sensed that that was not the reason, so I digged deeper. That's when the flood gates opened and the anxiety of the past 3 months finally came out. She told me about how scared she was that anything she put in her mouth could kill her, etc., and that I was making her more anxious because I am always warning her about everything. (I thought I was just helping her be more aware because I learn something new all the time). She talked about how her friend's mom doesn't obsess like that (friend with a peanut/nut allergy. The mom actually does worry a lot, but they have had 14 years to get used to this and maybe her anxiety doesn't come across so distinctly). She also mentioned she was afraid of the Epi-pen (she has always been afraid of needles), that she didn't know how she is supposed to know the difference between a reaction and just indigestion (her reaction started with stomach cramps and indigestion, vomitting, etc. The hives and the swelling up came after).

I knew that this had to have a phenomal psychological impact on her, but last night was the first time that she actually let it out. What do I do? Do I just sit back and let her live her life from now on?

My husband told me not to jump to conclusions before the testing. I asked him: "Do you believe that the testing will show she is not allergic at all?" To which he replied "Yes!" He thinks her reaction was just a fluke. (Cleopatra, Queen of Denial). He hasn't read anything on the subject, doesn't ask questions, nothing, so I get no support there.

Another mom I know whose son has a tree nut allergy was there at the meeting last night and she didn't ask any questions. She is not worried at all and seems fairly confident about the whole experience. Am I missing something here? Am I overreacting?

There's no yes and no answer to that question. I think that your situation is a bit different because your daughter was only recently diagnosed and you, your husband and your daughter have not come to terms with the enormity of it all (it does take a while to learn everything about it, change patterns and behaviours, etc). Perhaps the other parents have been dealing with this issue for several years now and do not have the same anxiety you do. Going on a trip overseas is a big deal when the diagnosis is only recent. There is no much to know and you don't feel confident about all of it yet.

The main question is "does your daughter want to go on this trip?" For example, if she didn't have the allergy, would she want to go? If so, you must make sure that she is responsible about her allergy, that she will not be embarrassed to ask questions if she is unsure about any foods. She must know how to use the Epipen and carry it with her at all times. No Epipen, no food. Have you purchased the Epipen trainer? It doesn't have a needle but it may take the fear out of using it. My son likes to practice it and doesn't seem afraid to jab it in his thigh, even though he knows the real one has a needle in it.

The next issue would be to have a one-on-one discussion with the teacher who will be going on the trip. Don't lecture her but convey your fears. I'm sure she will understand. If she seems hesistant and looks like she really doesn't have a clue about allergies, then speak to someone who is knowledgeable. Try to be objective but follow your gut instincts. Only you and your family can make the ultimate decision.

But try not to let fear stop you and your family from doing things. They may take a lot more planning but in the end it's worth it. I completely understand your anxiety. Last week my son's father took him to California for a week. He's his father and extremely allergy aware and responsible but I still worried. I worried about the plane ride, I worried about food at the hotel, Disneyland, I worried about the babysitting service he would be using while he was working, I worried about the rides at Disneyland... were they too dangerous, etc?? I worried about everything (because I think as mothers we are naturally inclined to do that) but I didn't stop him from going. In the end, my son had the time of his life, showed how responsible he was about his allergies and now has wonderful memories of a great trip with his father!

_________________
15-year-old son: peanuts, nuts, raw egg whites, asthmatic
Self: allergic rhinitis, fragrance/chemical sensitivities, oral allergy syndrome

Nicole, I have adult on-set allergies and it's quite a slap in the face when it happens to you. I can understand how your daughter feels to suddenly develop them. It's probably harder as a teen then as an adult.

It took me two years before I was willing to travel and I had to really want to be where I was going. I've never been one for travelling anyway though.

Will she be getting the testing done before the trip? I'm surprised it's taking three months to get in to a specialist.

As for how will she know when it's a reaction -- that's a bit of a tough one. Did she have a feeling of *doom* with her previous reaction? For me, it feels kind of like a big black cloud is enveloping me (think cartoon), but I think it's a bit different for everybody. She would know if she felt it. That doesn't come with indigestion - just anaphylaxis.

Also, let her know that if it seems like a reaction - treat it as one. I would never want to see someone jabbing themselves with an epi-pen every few days - but if she *thinks* it's a reaction use the epi. It is safer when not needed, then to not use it when it is needed.

I don't think you are over-reacting. You need to know that the adults supervising your child fully comprehend what is required. I've needed my husband to help me through some reactions - and a few times, I forgot to ask all the questions and it was him that questioned an unsafe food. Your daughter may be quite capable of keeping herself safe, but as a minor it is still necessary to have an adult responsible to help her.

**********

It might help her to talk about the allergy and life in general. There may be other anxieties she is feeling about it. Maybe a school councillor could help as well (with the anxiety, not with the allergies).

First, be glad that she has cinfided her fears in you. Now you can understand where she is coming from and you can assist her to get to where you want her to be.
Here is the link to an article at Allergic Living. A child an episode to another child. I plan to read it to our daughter.
http://www.allergicliving.com/readers.asp?feature=9
I try to focus on adapting the situation to meet our needs. They are simple needs, keep our daughter safe. Perhaps you can help her think of ways to do that. Try to empower her. Ultimately independance is what we want in our children (eventually). Can you join a support group and have her meet other children going through the same thing? Can you get the FAAN books out of the library? There is one that is a series of thoughts by teenagers. She might find it interesting, you might find it interesting.
Second, a huge stress is having a spouse who is not on board with the allergy issue. You say he is in denial. Does he bring any allergens into the home? Does his actions place your daughter at risk? Would he give her the EpiPen if needed? If yes, you need to speak to him. If no, perhaps his own fears stop him. After all, he is the man and the protector. That is a lot of responsibility. (I don't really think like that but who knows, he might)
Good luck!

edited by _Susan_ because my 'L' key sticks

_________________
Moderator
Daughter: asthma, allergies to egg, milk, peanuts, tree nuts, most legumes (not soy) & penicillin. Developing hayfever type allergies.
Husband: no allergies
Me: allergies to some tree that flowers in May
Cat: allergic to beef, pork and lamb

Thank you Storm, Annamarie and Susan for your posts. It's nice to get reassurance.

First, the trip is not until next year and we have until the fall to sign up, so I think we're going to hold off making a decision for now, until we are more confident about how to handle things. I told my daughter that we will go to France someday somehow, so it's only a matter of time. (It's also a dream of mine to go).

I don't why either it took so long to get an appointment, but I don't think we have anybody in Burlington right now, my other daughter's allergist (for her asthma and environmental allergies) is still on maternity leave, so they are sending us to Hamilton. They will also check for amoxicillin allergy.

As for being able to tell if she is going into an allergic reaction, she says she's afraid she won't know, but I think she will know. She will get that same feeling again.

Susan, thank you for the link. I read it and will have my dd read it as well. I like the way the little boy took charge. And thank you for the tip about the FAAN books, I will go to my local library and look for them. You're right, my daughter needs to feel empowered, that's the key.

And you also made me realize that no, my husband is not in total denial. His actions don't place my daughter at risk, and he would give her the Epipen. I just wish he would read up more about it. I guess he relies on me to get all the info and pass it on to him.

Thank you all for letting me vent about our fears and frustrations. This is a wonderful forum. I hope someday I will be able to help someone else in our situation.

Hi Nicole -- everyone goes through a period of emotional adjustment and acceptance and I can say from personal experience, it does get better. You begin to realize, through educating yourself, that food allergy can be managed. Being a teenager can be a crazy time on its own without factoring in the discovery that you have developed a life threatening allergy. Time will show your daughter that she can handle it. I don't know how receptive your daughter is at this point to learning more about her allergy -- but I think that if she sits down with you, together you can find answers to some of the things that are worrying her. I believe that the more you know about the thing that causes you worry, the less of a worry it becomes because you deal with the "what if" questions head on. If they don't have anaphylaxis support groups for teens how about creating your own "mini" one with your daughter's friend and her mother? As well as potentially being a good support system for you, perhaps she would be willing to sit down share some things that will show your daughter that it's normal for her mother to be worried and concerned for her (because that is how she felt when her daughter was diagnosed 14 years earlier). Teenagers have a tendancy to want to break away a bit from mom and dad -- perhaps her friend's mom can show her that you really aren't all that different, that you both want your daughters to be happy, healthy and safe, but that you're just at different points within the spectrum of living with allergies.


Don't we all feel this?

I just wanted to add that you are already helping others -- by sharing your story, others are learning through your experience.

If you decide to allow her to go to France, here are some downloads that you can print off.
There is a card for restaurants explaining food allergies as we as a basic emergency plan. They have many languages available.

http://www.foodallergyinitiative.org/se ... ction_id=5

_________________
Moderator
Daughter: asthma, allergies to egg, milk, peanuts, tree nuts, most legumes (not soy) & penicillin. Developing hayfever type allergies.
Husband: no allergies
Me: allergies to some tree that flowers in May
Cat: allergic to beef, pork and lamb

Nicole, have you talked to the company running the tour? If this program is run through a company that regularly handles school tours, you may find they have systems in place to safeguard their charges. When my son went on the grade 8 trip to Quebec, the tour company made sure one of the guides with their group was peanut-allergic. Unfortunately, she was absent one day. One of my son's teachers had also promised to watch out for him. He was a scout leader, trained in first aid and took my son to McDonalds in Quebec City when the tour stopped at a market for lunch. The entire experience gave my son confidence. He was responsible for making inquiries everywhere he went but had his teacher (and the guide) for back-up. (Was I nervous while he was gone? --- THE WHOLE TIME! Was he nervous? --- not so much.

_________________
Mom of 21 yr old son with peanut/nut allergy & environmental allergies

Trust me, Nicole, you will. Five years from now all of us with young kids will be coming to you for help with the teen years!

Something else your daughter might like to tap into (if she hasn't found it already) is FAAN's teen site - http://www.faanteen.org.

K.

_________________
Karen, proud Mom of
- DS1 (12 yrs): allergic to cashews, pistachios, Brazil nuts, potatoes, some legumes, some fish, pumpkin seeds; OAS
- DS2 (1o yrs): ana. to dairy, eggs, peanuts; asthma

Thank you Yakkie and Karen for your kind, supportive words.

I will talk to the tour company. Yakkie, you make a good point that she is probably not the first student to go with food allergies.

Karen, I checked out the faan teen website and I will show it to her, it had a lot of relevant advice for teens, from travelling and dating to how to handle the school scene. I'm sure she will find it useful to read about other kids like her and how they handle their allergies. One boy even went to Holland on a baseball trip!

Things will get easier, I'm sure, they have already, but it hits you in waves sometimes.

And I will have to start letting go, I know, but she has to prove to me that she can handle it first. She is already very smart and independant, so it's just a matter of time and experience with this whole allergy process.

Thank you again, I will keep you posted on what we decide to do about the trip.

How about asking the Doc for an allergy action plan at your visit? This would spell out when to use Epi, Benadryl, how much to carry, etc... It would spell out a clear plan for your daughter, and perhaps ease some of her anxiety. I think this is a great idea for patients of all ages. (This seems to be prevalent for school-age children so the school will have a guideline for allergic reactions. But, I think it's a great idea for parents and kids to have the information, also. After seeing how many questions people have about their allergies, it's obvious much of the allergy information is not coming from the Docs.)

Daisy

Hi Daisy from Georgia!

I think an action plan is an excellent idea. She has one for her asthma, it's only natural she should have one for her allergy. I put it down on my list for the allergist.



So true! We have all said that before.

Thanks for your advice.

Nicole - the one thing I would stress to your daughter (whether in France or at home) is that, since she is asthmatic, to be extra careful to make sure that her asthma is well controlled, and to also be aware that if she is not sure whether she is having an asthma attack or anaphylaxis, to treat with the EpiPen/Twinject.

See
http://www.allergysafecommunities.ca/default.asp?catid=14&catsubid=20 (third paragraph).

As you likely know, there have been some teen deaths in the past couple of years in Canada from anaphylaxis, and unfortunately it's been asthmatic teens who thought they were having an asthma attack and didn't get epinephrine in time.

So the experts are now saying, if you're not sure whether it's asthma or anaphylaxis, to go for the epinephrine.

K.

_________________
Karen, proud Mom of
- DS1 (12 yrs): allergic to cashews, pistachios, Brazil nuts, potatoes, some legumes, some fish, pumpkin seeds; OAS
- DS2 (1o yrs): ana. to dairy, eggs, peanuts; asthma

Thank you Karen.

I did mention to her that she should not hesitate to use her epi-pen in case of a severe asthma attack.

Her asthma has always been well under control. She has never had a very severe attack, so I told her that if she did have a severe attack, it could be a sign of anaphylaxis and to err on the side of caution.

Nicole, I don't deal with asthma, repeating what I've read from others, epinephrine will help with a severe asthma attack. (Those living with asthma, please confirm or deny this.)

If it is correct - make sure your daughter knows this. To know that the same treatment will help whether it's anaphylaxis or asthma would eliminate the need to figure out what's wrong before treating. (I hope I posted that clearly. )