Talking Allergies

hello,

I'm new to posting here (and in general) but I thought I'd add my two cents to this conversation. My daughter was easily recognized as having a dairy allergy (vomitting, hives etc), but they continued to check her for celiac disease because of her diarrhea (7 times a day). She was losing weight and they were starting to look at a failure to thrive diagnosis. I nursed her until she was 1 years old and then switched to soy. It turns out even though she was tested for soy, and it was negative, she had a sensitivity to it. (My theory is that she was just so compromised gastrointestinally she could not process it). After about 2 years with no soy she is able to have it again, but does not enjoy drinking it (she really only drinks water). She has also grown out of a life threatening allergy to eggs so my life has gotten alot easier with only dairy and nuts to worry about.

I know how overwhelming it can feel, but it gets easier. There are so many easy ways to modify a dairy free diet, and although I know some would disagree with me here, there are ways to avoid cross contamination and still have a little dairy sometimes in your life. It's hard to believe not "allowing" your child to have something that has always been billed as nutritous and good for you, but on the occassion when we have dairy, our dd thinks it "stinks" and is "gross". A young adult that I've talked with that also has a severe dairy allergy says he doesn't feel bad about not having dairy, but I recently introduced him to an actual dairy free "cheese" (not just lactose free) and he started making macaroni and cheese which he completely enjoys!! There is life after no dairy!!

You guys or so helpful thank you, I am trying to avoid everything i can, we have been up since 3 am and she keeps saying that her nose hurts, I wish i could take it all away, but I realize god wouldn't plan this for me if i couldn't handle it


we treated her for celiac for 8 months, we checked food, soap, playdough, any thing that she came into contact with and that was very overwhelming, and I am not even 100% sure she doesn't have it, hopefully not

how do you/child feel when they get milk?

I'm sorry that this has been going on for you. I remember how devastated I was thinking that I can't even do the most basic thing for my child and feed her. I didn't realize at the time when they started testing her for celiac disease that she was supposed to continue on her regular diet (not gluten free) and so for several months we were dairy and gluten free. It was a large learning curve.

As for how she feels when she has had dairy, perhaps someone with an older child can answer that. Most of our dairy encounters happened when she was too young to vocalize her thoughts. What I can say is the last dairy challenge in the allergist office was very unpleasant behaviorally. She started to get welts around her mouth and then proceeded to cry and fling herself around. I don't know if anyone else gets a behavior change?

Does her nose hurt because she's been vomitting? I know sometimes if I've been vomitting alot it will accidentally go into my nose (sorry, kinda gross I know) and it will be sore.

My milk allergic daughter gets hives and swelling from very small traces. We have been really lucky that she has not ingested it since her first severe reaction. Her severe reaction consisted of hives, face swelling, swatting at head (suggested swelling of inner ear and sinus cavities), vomiting. It is so hard to tell how they are feeling since they can not verbalize it to you. Previously, my nut/fish/egg allergic husband felt (because of the way he was raised ) it was okay to eat small amount of egg in baking and meat batters, he was also a migraine sufferer. When our youngest was diagnosed with egg allergy, and we removed all egg from the house and our diets my husbands migraines *mysteriously* disappeared.

As a child my husband was regularily exposed to his allergens. Sometimes he required epinephrine, but other times he suffered silently without anaphylactic symptoms, but still he had pain in entire body, asthma, eczema, sinus problems, head aches, stomach cramps and stomach pain. His mother assumed that because he was not going into anaphylactic shock, and did not have hives or obvious signs of breathing distress that it was okay to feed him small amounts, but he still suffered needlessly because of it.

I wonder if her nose hurts from milk, I thought we were doing good by avoiding milk but come to find out that I was not elminating everything, like microwave popcorn (i know butter,,just wasn't thinking and she was watching her dad eat it with puppy eyes, ) just like the other diet we were on, I will eventually get the hang of it
her doctor and I have been trying to fiqure out why her nose hurts, we have tried humtilfiers, medicine, antibiotics, but mabey its the way she reacts, she does throw up once in awhile, and she had surgery to fix her reflux, so I don't know which is which, I just wish she could tell what to do, Today she told her buddy that she can't have milk , it will make her sick, i am so proud of her she is starting to understand alittle,

sarahjo
When my nose is really dry (inside) it hurts. Could it be the claritin? Sometimes the antihistamines dry you up a little too much.
Just a thought.
Daisy

oddly enough, it's nice to hear of other peoples violent reactions because that's how my daughters is as well. Saskmommyof2, does your child react with welts from skin contact? I don't know if this still happens for her, she has not had contact for so long. Our child also had life threatening allergies to eggs and nuts so I carry around epi-pens, but according to her dairy reactions (vomitting, lethargy, hives, funny breathing sounds) I would have to use the epi-pen if she had contact. Is it possible to have ana reactions to dairy? I always assumed she could be extremely sick but not die!!

Sarajo, I know how you feel about the puppy dog eyes. It must be even more difficult to take it away after she (presumably) enjoys some dairy products. Although it's a bit more work than microwave popcorn, we bought a hot air popper and use fleischmans lactose free margarine on it. Is your child still gluten free?

True about the antihistamine for my child too. When she first started using it she would not pee for hours. It seems to really dry some people up. She seems to be o.k. with it now...

Yes, my youngest (milk/egg/chicken/playdoh/cats/dogs undiagnosed environmental) daughter gets hives from minor contact. My oldest (peanuts/nuts) has only had one incident of hives from contact froma toy phone. Yes, dairy can be anaphylactic. I am assuming here that because you are unsure of dairy causing anaphylaxis that you are unfamiliar with sabrina shannon. There is lots of info about sabrinas story on this forum. Basically she was a girl with a dairy allergy who ate french fries from her school cafeteria. No dairy in the fries or oil, just cross-contaminated by tongs that also handled poutine. She died. Her story is a real eye-opener to anyone who has doubts as to the potential that very little amounts of dairy can kill an allergic child. Sabrinas story is in the first issue of AL magazine, spring 2005, you can back order issues here, I strongly suggest you read about her story. I am not the type to cry , but sabrinas story really hit home and I definitely cried.

I am stunned! I have heard about sabrinas law, but I truly don't recall hearing the circumstances of it. (a dairy reaction!!) I cannot believe that even though I know under what circumstances to administer the epi-pen I never made the connection that it would include dairy and not just her nuts or egg allergy. Wow...and here I thought that I was fully aware and educated! Thanks for helping to open my eyes!

sarahjo

Any updates on your daughter? I hope she is doing well.

How are you doing?

Daisy

HI Katarah has been in the hosptial for 4 days now, she has influenza A and rotovirus, it has been very hard, because she is in alot of pain. she lost 2 pounds. The hospital caferteria ladies drive me crazy, she is suppose to be on a brat diet, so they send up chicken strips, french toast with syrup, I know she can't have the bread, so she should only get rice, applesauce, and banana's, I don't even have a degree and I know that. Sorry it has been a long week. I ended up passing out her first night there,and got wheeled to the emergency room. My blood pressure was 178/100....I am on blood pressure medicine already..so needless to say it has been a hard week. sorry i needed to vent. thank you sarah

sarahjo, I'm so sorry to hear about your daughter being hospitalized! You and your daughter are going through SO MUCH!, and it must be agony for you! I would recommend that you have someone bring in the proper foods for your daughter, and not trust the cafeteria. My son was hospitalized when he was 15 months old, and that's what we had to do. With food allergies, I don't think even a hospital is the best place to prepare the necessary food. I really hope your daughter is well soon!

A close relative of mine works in our local hospital dietary (kitchen) department. The other kitchen employees are not at all allergy aware. They even served chicken in a brown sauce in the cafeteria, well the brown sauce was peanut butter based and no one (other than the person I know) thought to include a sign warning that the sauce was PB. So, yes they are even cooking with PB and getting it all over the dishes, utensils, counters etc. Also, they totally DO NOT get that when making food...rice for example...you do not share utensils, and adding "a little bit" of margarine so that it does not stick is not okay for someone with allergies. Many people do not recognize margarine as containing milk!

Hospital kitchen employees are not trained in dealing with the dietary restrictions diagnosed by patients physicains enough to be preparing food for people with severe dietary restrictiions. They are regular people, and as we all know regular people do not get it. Most of them do not realize that their is a difference between lactose intolerance, and milk allergy. They may see other "lactose intolerant" patients eating small amounts of milk, or eating it with lactaid, and assume that your child must be okay with a litle since in their mind allergy and lactose intolerance are the same.

After our diagnosis, the person I know, and their co-workers (hospital kitchen staff) were trying to convince me that yogurt and cheese are okay for those with milk allergy. (They are low in lactose/ high in casien) And that I should try them because so and so is "allergic (intolerant)" and eats them. To this day, I don't know if they believe me that NO THEY ARE NOT OKAY, and lactose intolerance and milk allergy are NOT THE SAME THING!!!!

sarahjo, i'm sorry to hear about all you and your daughter are going through! I was doing some research and came across this site:

http://www.medicinenet.com/eosinophilic ... /page2.htm



It might not be the problem, but I thought I'd mention it just in case....some of your daughter's symptoms sound like this condition and it is common in people with allergies. You might want to ask your doctor or allergist or gastrointerologist...

I hope your daughter is better soon!

sarahjo

Oh my ! Your poor daughter. How is she feeling? Must be difficult to entertain a little one in a hospital room. Hope they have cable TV.
Make sure she gets plenty of "safe" popsicles when the doc says she can have them...Pedialyte makes one (without too much sugar) to keep her from getting dehydrated when she gets home.
I know what you mean about hospital food. I'm picky anyway, and my allergies just add to the problem. They kept sending me bacon and eggs for breakfast. Now, I had an upset stomach as it was....needed only fluids and dry toast. And I had an allergy alert in my chart. I didn't find out until I was almost out, but you can ask for a patient advocate in some hospitals. They're like a customer service person that will coordinate with any problems you are having. But I'm with Julie about the foods - get a friend or neighbor to pick up some applesauce and bananas at the grocery store.

Don't be shy about asking people for help. Most people would like to do something when someone is in the hospital, but don't know what is needed. This is something simple that a neighbor would probably be happy to do for you.

And vent away....we're here for support as well as sharing information!

Take care of yourself....you need to nap during the day if she is able to nap. And much handwashing to prevent you getting the flu... don't be afraid to ask anyone that comes in the room to wash their hands.

Prayers from Georgia,
Daisy