Talking Allergies

I'm finding that no one understands my son's milk allergy. "It only contains a little bit of butter from greasing the pan", or "I had a lactose intolerance when I was his age". My allergist just told me that he suspects my son will never grow out of this. I am scared to death that he is starting school this week (he's 5), and he had a very severe reaction in June.

Can anyone else give me some advice about milk allergy, or tell me when / if you grew out of it?

Thanks,

Connie

Our daughter has milk and egg allergies for which she carries an Epi-Pen. Her milk allergies are severe, her egg was picked up by skin testing but seems stronger than the milk. Her asthma compounds the issue- as far as I can understand the asthma increases the chance of an anaphylaxis reaction. (Someone please correct me if I'm wrong.)
When the general public hears Anaphylaxis, they tend to think peanuts. I think that this is due to the amount of information that has been out in the past . I think we all ride on the coattails of those wh came before us and for that I'm grateful.
You can site the Bill 3 Sabrina's Law, that comes into effect in Ontario January 2006 as being created by the parents of a young girl who died from an anphylaxic reaction to milk (mik protien from poutine on the tongs which served her "safe" french fries). I find that this really brings home to people that fact that milk can be deadly.

Hi Connie;
My Son Is going to be 6 in October. He to has a severe allergy to Dairy. His rast test levels (blood) are so high that his allergist thinks that he will not grow out of it. School is another issue. Our Class has been Dairy free for 2 years now. This year there is a new split, and one of the parents called me tonight yelling at me. She said that the dairy ban is a huge overeaction and that she planned on fighting for the rights of the other children in the class to be able to eat dairy. I hope you do not have this type of reponse.
Karen

My 6 year old daughter also has a milk and egg allergy. We discovered the milk allergy when at 7 months I gave her some formula for the first time. She has been tested annually for both allergies and last year had the blood tests done. She scored very high for the milk and high for the egg. It is looking more and more like she will not outgrow these allergies.

Starting school was very nerve wracking for us. However, we have always had good communication with her teachers. I talk to the teachers before the school year starts to make them aware of her allergies and also make suggestions for procedures in the classroom, i.e. hand washing, no sharing of food, a "no food" policy for birthdays,etc. Our teachers have always been very supportive. My daughter is very aware of her allergies and does not accept food that does not come from home. She also wears a double epi-belt everywhere she goes.

I know what you mean about people not taking your son's allergy seriously. I have been there. But more and more people are becoming aware of the top food allergens. As the parents of allergic children we also have to the responsibility of making sure that those people who are in contact with our children are aware of the severity of these allergies.

Karen, That's terrible! Sometimes these problems resolve themselves. i.e. people who are that aggressive and belligerant don't often come across as people whose sides others want to take. But you might need outside help with this...i.e. the principal of the school might have to do some mediating...but even this might not help. Sometimes there is just not much that can be done other than to hope that the school will maintain a strong stance on protecting allergic students. I think the key thing to emphasize here is that this is not a power struggle between individual parents about which child's 'rights' get priority...this is about measures taken by the school in consultation with the medical community and parents of an allergic child to protect allergic students.

thanks lisa.
I will keep you all posted, I guess the fight starts today.
Karen

People fighting over which parent has the rights to be respected is something that you will probably face more than once in your life (and your kid's life too). The best thing I found (and it doesn't always work) is to sit down with a third party and explain everything IN DETAILS! You can make links to the person, link events that happened, propose alternatives to dairy that their child can have, etc. CALMLY respond to every comment that person has. Staying calm may annoy the other person, but I have found that telling things like they are, telling them that you are affraid for your kids's life, how little it took for reactions (keep the test numbers to yourself, it means nothing to them ) and all. It will not work with everyone from what I found, but it will resolve many issues that are due to plain and simple ignorance! (I have to go through that for my anaphylaxis AND scent allergy AND asthma... many people's "rights" get crushed but most times, it's possible to reason with these people and come to an aggreement.

Good luck.

Mylène
(oh yeah, I actually grew into my milk allergy and don't expect to ever outgrow it )

Good points Mylene! I would think that describing an anaphylaxis reaction and taking it all the way to the death, then pointing out to the person how traumatic it can be for those who watch (Their child ) might get their attention.
Sometimes you have to present the information in a manner that points out how much better it is for them.

Most people react that way out of ignorance. I remember one of my ex-colleagues who had petitionned for years against his kids' school's peanut ban... after I had a good discussion with him and explained everything I have to live with, he switched to helping out the other parents at the schoold by convincing his group that they were wrong. I was so proud of him the day he told me that his "old" group had dissolved because most parents finally got the point of why there was a peanut ban in the school. Education is key! You just have to remember how much YOU knew about allergies before being faced with it... You also have to make them realize how they would feel if it was them being faced with the allergy and not your child. (That helps a lot by giving examples).

Mylène

Hi I have an 8yr old daughter who's last RAST test 2 yrs ago was 6.96, a 6 being severly
high. Even by touching something that has residue, she immediately breakes out in hives.
She's had many different reactions,( some really weird ones too) but has gone into anaphalactic shock 3 times & used the epi pen 3 times. People look at me like I've got 3 heads when I tell them the sevarity. It's just ignorance.

Anne

People look at me funny because I'm allergic to fish! I guess people are more used to hearing about peanut allergies... instead of plain old fish! The more they hear about it, the more they'll know!

Wow, I didn't know that anyone had actually replied to my post! I didn't get any notification...

Anyway, my son has been in school now for 3 weeks. The night I joined this forum I ordered the belt / Protectube and pouch from Medic-Alert. His teacher is OK with him wearing it. She also keeps one in her desk. Her dad needs one, so she is very comfortable with how to use them. I also put some chewable Benadryl in there.

I certainly don't expect the classroom to be milk-free - and the reason is that I don't trust that other parents would understand or comply with a milk ban. But his teacher has agreed that my son will only sit with kids who are not drinking milk. It is just 1/2 day kindergarten, so they have a mid-morning snack ... and most kids bring water or juice to drink anyways.

Next week is a meeting for school volunteers, so I plan on getting to know my classroom volunteer, and educate her, so that for all planned "events" like pizza days, Hallowe'en parties, etc, I will be given priority as a classroom supervisor.

My son is very good at not eating other foods, but if another parent told him "there's no milk in it", he might just go ahead and eat it. And THAT is why I can't trust other parents. I know it wouldn't be deliberate, but they just don't know what to look for.

I'm slowly getting comfortable. My son absolutely LOVES school, and his teacher told me he's well-liked. So once I get to know the other parents, I'm sure many will naturally want to help me protect him.

Connie

My daughter is. I think that this is the worst allergy to have. It is everywhere. The world is littered with goldfish crackers and cheezies! Sometimes I feel that I cannot take her anywhere without running into them.


In June, I was at a childrens festival. My daughters and I were inside, waiting for a puppet show to start. There was no food allowed in this room. A child near us was eating ice cream. He kept coming towards my kids to say hi. I politely told his mother that my daughter was allergic to milk and would get hives if his icecream touched her.
She told me, "We were here first...If shes that allergic you should've stayed home."
Yeah, real nice! Sometimes you gotta love the example other parents set for their kids. No compassion, no feelings...nice mom. I'd like to call her something else, but its not allowed on this forum.

Hi saskmommyof2, I've just been catching up after a long while away from the boards. You hit the nail on the head as far as I'm concerned with your comment about compassion. I think that is the best way to get through to some of these blockheads who think their kids' rights to eat what they want outweigh our kids' rights to be safe. A lot of parents of non-allergic children would say "it's not our responsibility to keep your child safe, it's your responsibility to teach your child how to protect themself and how to deal with food blah blah blah." well I say what is so wrong with everyone teaching their children a little compassion and how to make a child feel welcome and included instead of ostracized and different. What's more important when celebrating Christmas/Halloween/Valentines/birthdays etc. - being together with friends and having some fun; or eating sugar cookies and cupcakes that could potentially harm (or worse) one or more of the children. Where is the compassion?????? Would you host a house-party and serve a bunch of food that one of your guests couldn't eat? I don't think so (unless you're a terrible host/hostess). So how about teaching those manners and compassion to our children. ARGHHHHH!

sorry for the rant. recently took my severely milk- and egg-allergic daughter to one of her best friend's birthday parties (whose parents are also two of our best friends) where they served real butter poundcake topped with ice cream. i brought along her safe cupcake as usual so she got to feel like the odd one as usual.

I guess for children it's hard to feel like the odd one but with time and age, you build yourself an armor and you don't really care. I don't anyway. I know there is a new girl at work and she always feels awful when someone buys chocolate that may contain and they eat it and I don't have any or when some people go out to eat and I don't go. It's nice of her, but I don't feel bad for myself. I'm used to it and I rely on myself. I'm guessing allergy teaches kid self-reliance and independance. Wouln't you say?

And speaking for myself, allergic kid are less likely to smoke to drink or try drugs because of the pressure of others. You're already different because of allergy so I always thought I would not try drugs or get drunk to be like everyone else since I was already different because of my allergy. So I grew very stubborn about those things, which my parents always found very comforting and never were worry when I when out with my friends because they knew I would not get drunk or stone.