milk allergies(Kayley\'s story makes me scared)

Posted on: Sun, 01/21/2007 - 11:30am
chanda4's picture
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I have 2 little ones with milk allergies. My 3 1/2yr old broke out in hives at birth and after a few weeks we figured it out. And my almost 1yr old, same thing(figured it out quicker since we'd been through it before). But, like Kailey(sorry I miss-spelled her name in the subject line, I tried to correct it), they haven't had any serious reactions, maybe some hives, severe stomach pain, diarrhea and my youngest did get some lip/mouth swelling once. How do you know if it's going to be life threatening??? For the last 3 1/2 yrs when we order pizza I just scrap all the cheese off C's piece and he eats it....but after hearing stories like Kailey or even Sabrina....how do you know when it's life threatening?? I suppose I should stop just peeling cheese off his food, because I never know. But then people look at me like "well, you've been doing it all along and nothing has happened"...I'm torn and don't know what to do. They're CAP RAST has been a little on the low side (3 1/2yr old is 1.65(level 2) and my 1yr old is 2.20(level 2). Would you suggest I get a little more serious, my other 2 kids drink milk, while the younger ones drink rice milk...so it's in the house and they are around it. I am just scared I'm not doing enough and one of these days I will be in trouble. I suppose I need to ask the allergist, but they kind of give you a run around....I'll call tomorrow. I wish food allergies were black and white, there are too many gray areas inmy opinion. Thanks for letting me ramble. Chanda

[This message has been edited by chanda4 (edited January 21, 2007).]

Posted on: Sun, 01/21/2007 - 12:05pm
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My daughter has milk, egg, rice, and peanut allergies. I would never give her pizza with the cheese pealed off, but you have your comfort zone and you have a right to it. My allergist's advise gave me a very narrow comfort zone even though her milk RAST score is rather low. I have the comfort zone I have mostly because I believe what my allergist says. I have to admit I am influence a bit by what I read here - especially in regards to manufacturers pratices. What does your allergist say? Mine says that although my dd reactions to milk have never gone beyond hives that you cannot tell how sever the next reaction will be by what the previous ones have been. I maybe an extremist in how I react to her allergies. We don't take her out to eat. I would never let her eat anything from a bakery or deli. Keep reading what you see here and you will find people with varing comfort zones and everyone is doing what they truely believe is in the absolute best interest of their child. I think I also act on the fear that if I don't have a tight comfort zone something will happen and I will spend the rest of my days regreting it. I don't know if that is the right way to live, but it is the best I can do. I don't know if that helps you but it is meant too.
Cindy

Posted on: Sun, 01/21/2007 - 12:07pm
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I know, that sounds unheard of...but we've been doing it for a couple years....so I don't know how serious this is, if it's just a minor allergy or if it's going to turn serious in 9 years(like Kailey's). He's eaten baked foods with milk in it too....I've really tried to get serious about this in the last couple of months even, but then family gives me a hard time because we've had no problems before, so why change(is their question).....but I totally understand your comment, I would NEVER scrape peanut butter off my PA child's sandwich....because he WOULD have a reaction...but with the milk, most likely he wouldn't(it's not black and white)...
I needed to EDIT....when we found out he was positive to milk, his allergist never said he could die, just keep it out of his diet as best we could...I did think peeling the cheese off the pizza was okay, never had I heard of cross contamination until recently(and yes I am learning SO much from this site, thank you!!!) since he wasn't actually eating the cheese, and not having a reaction, I thought it worked.....but I know, I am learning, I need to be WAAAAY mroe careful and I am trying to do so, I am. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
[This message has been edited by chanda4 (edited January 21, 2007).]

Posted on: Sun, 01/21/2007 - 12:22pm
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I c
[This message has been edited by onedayatatime (edited September 11, 2007).]

Posted on: Sun, 01/21/2007 - 12:27pm
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I would say that you definitely need to talk to your allergist. From what I know about milk allergies, they can range in severity moreso than peanut allergies.
We don't let my ds eat anything with any traces of milk because him symptoms are anaphylactic, so no point in going in that direction.
I think if you asked a bunch of people in a room with milk allergic children, they could all potentially have different experiences. For example, I have a friend who gives her dd the pizza crust, and she doesn't react to it. I have another friend who's ds went into anaphylaxis from his brother eating cheese popcorn and lifting up his shirt to change it and the residue got in the air. We are somewhere in the middle of those two examples.
There is also the whole theory that strict avoidance will help with outgrowing the allergy to consider.
Most importantly, as far as symptoms go -- if two body systems are involved in one reaction, then it is defined as anaphylaxis. I'm not sure from your description if one symptom or more than one were present. Lip swelling, I was told by my allergist FWIW, is to be treated very seriously.
If you're feeling uncomfortable with how you're doing things, I don't see any reason why you couldn't try changing them. Family members...well...they'll always have opinions right? But they're not the parents here.
Has your allergist given you an emergency action plan? If not, I'd ask for one. It should detail treatment needed for symptoms of reactions, and perhaps that will help you. Meg

Posted on: Sun, 01/21/2007 - 12:47pm
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Anna....(hey thanks to all of you for your opinions, I really do appreciate it) but you had brought up the point, do you eliminate ALL the allergy foods from your house??? At what point is it enough, or do you need to do more??? I have those same questions. I know it would be BESt if I did keep all our allergy foods out of the house, but that the same time, it would be impossible.....between all 4 of my kids they are allergic to peanuts/all tree nuts, milk, eggs, soy, chocolate, beef and pork(and possibly turkey).....that would be impossible! Often at dinner I use turkey meat for some, and hamburger for the others, or cows milk for some and rice milk for the others....I try to make meals safe for everyone, but I usually cook a version for this child and another for the other....if that makes sense.....I should eliminate ALL the allergen foods, but then what would we eat...it's hard

Posted on: Sun, 01/21/2007 - 12:53pm
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Trust your instincts. If you feel like you need to tighten your comfort zone - do it, and don't worry about what others think. Just tell them you are following the doctor's orders. Whoever brought up the fact that limiting exposures can help your child to outgrow, that is an excellent point and a great reason to point out to anyone who questions you.
Before I understood about label reading and x contamination, my PA son had his share of may contains. But I don't look back on it and think those things we ever ok for him - I think we were incredibly lucky, and had God watching over him.

Posted on: Sun, 01/21/2007 - 1:09pm
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I would have used the epi for lip swelling. The reason is that if there is lip swelling, there could be swelling of the airway or throat that you can`t see. In fact, my dd was prescribed an epi because she got a few hives after drinking milk. We do strict avoidance, and in fact, she has had a reaction from an item where a knife had been used for something with milk, rinsed, and dried (we were told it had been washed, but that turned out not to be true, it was only rinsed), then used to prepare something for dd. Just to give you a frame of reference her cap rast to milk was 1.22 when she had the reaction due to the shared knife. I believe in strict avoidance, read all ingredients and don`t give her any items with milk, casein, whey, etc. As far as the relatives, if I did what my relatives said, dd would not be alive. When it goes against my child`s safety, I totally ignore what they say. It isn`t their child.
[This message has been edited by Carefulmom (edited January 21, 2007).]

Posted on: Sun, 01/21/2007 - 1:18pm
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Chanda,
Your child is experiencing symptoms that may be more serious that you realize. I have gastrointestinal anaphylaxis with shellfish. Another adult member of the board here has it with peanut. Maybe she'll jump in.
I had an ana reaction to cross contamination that caused GI anaphylaxis. Tongs that had touched shrimp were used to turn my steak. Two hours later I was dealing with diarrhea and horrible stomach cramps. I took lots of benadryl and eventually had to use an Epi (finally developed chest pains). That reaction became a protracted reaction--lasted four days, and I develped uterine contractions as another symptom (this is after the epi). GI reactions are more likely to result in protracted reactions, BTW.
At this point, all of my shellfish reactions have been GI (with the exception of my first symptom--spaciness, a headache, and the others I described). No hives. No swollen throat. Nothing else, yet. But I must stay away from the stuff, or I could die.
I will raise a GI reaction thread in the adult forum.
It [b]is serious. [/b]
To answer one of your questions about your house, I do know there is a post here that details what a few members do to keep dairy from their dairy allergic kids--even if they have it in their homes. It involves really segregating the fridge, dedicated pans, and I think even dedicated flatware or plates for someone.
You may want to look at that thread to get some ideas
Good luck with this.

Posted on: Sun, 01/21/2007 - 1:21pm
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Edit for the purpose of lurkers
[This message has been edited by NicoleinNH (edited June 10, 2007).]

Posted on: Sun, 01/21/2007 - 1:24pm
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Carefulmom...the lip swelling happend on my then 5 week old after holding a bottle of formula at her mouth(the formula dripped down her chin). I did give bendryl right away, but wasn't prepared(or educate) to do the epipen yet(this was her first reaction). I do have an epipen handy now, and with her(her level was 2.20) I am more careful(I am still breastfeeding her, so I have to pretend *I* am milk allergic as well). But all laong her 3 yr old brother(his level was 1.65), also milk allergic had been eating pizza with the cheese peeled off, no reactions(but positive testing)....so these are 2 very extreme reactions, thus the confusion(for me) as to what exactly do I need to do here....do I continue the way things are or do I buckle my butt down and be VERY careful, no exceptions??
edit, I know I can't say my 3yr old is reaction free, the hives and stomach pain/diarrhea was when he was younger, nothing in the last say 2yrs....
and for my youger one, she has had the hives, swollen lips ans also stomach pain(which has stopped since I cut ALL milk products out of my diet, in the last 11mths(since nursing)....I hope that is not confusing.
[This message has been edited by chanda4 (edited January 21, 2007).]

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