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PostPosted: Tue Feb 14, 2006 11:12 pm 
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Joined: Tue Feb 14, 2006 11:06 pm
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my 2 year old is on a feeding tube with failure to thrive, we treated her for celiac disease for 8 months seemed to help, test came back negative, now we found out that she is allergic to milk I am so overwhelmed please help with advice on what to avoid or any tips thank you :?


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PostPosted: Wed Feb 15, 2006 7:56 am 
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Joined: Tue Mar 22, 2005 11:17 pm
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Location: Ottawa
Poor you and your child! But the good news is now you know and can start to take control of the situation.
Has your allergist referred you to a dietician? I'm not sure what you feed your daughter is it a type of formula? There are some soy based formulas.
Check out the egg/milk allergy forum by scrolling down the forum index.


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PostPosted: Wed Feb 15, 2006 8:40 pm 
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She is on Nutramigen for formula, she doesn't drink milk, but eats many milk products, I have had a long day do I need to cut out casien out of her diet? or whey? my family tells me that I am overreacting with elminating anything that has milk, or its protiens, what do I do? what do i feed her? help me please :? :?


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PostPosted: Wed Feb 15, 2006 9:19 pm 
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Joined: Wed Aug 10, 2005 11:21 am
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Location: Cobourg, ON
I am surprised that your doctor did not give you this information about what to avoid. When my daughter was diagnosed at 14 months with a milk allergy we were told all milk ingredients including milk in baked items. Whey and casein are milk proteins so if your daughter has been told to avoid milk these will need to be eliminated. Talk to your doctor to clarify some of this information especially having to feed with a tube. There are lots of alternative products now that are milk free - soy yogurt, dairy free margarines, soy milk. Many relatives might not understand allergies very well so take your direction from your doctor.


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PostPosted: Wed Feb 15, 2006 11:08 pm 
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Location: Ottawa
http://www.kidshealth.org/parent/misc/m ... utout.html
Check out this website for a quick look at milk and it's many names.

I would suggest you cut out all dairy (better to err on the side of caution) and request clairification from your Dr. Also I would request a consultation with a dietician. You want to make sure your chid is meeting her nutritional requirements.

It is a huge learning curve for you and your family. To them milk is a wholesome food and how could it possibly hurt your child when they've drank it all their lives...
We've a heard this before. You are living this 24/7 they aren't and it will take them a little longer to come on board. Educate yourself and then educate them.


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PostPosted: Fri Feb 17, 2006 8:07 am 
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can you get a fever from a reaction? she has a fever of 100.5 she gets this alot and it just comes and then is gone the next day? doesn't make sense to me


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PostPosted: Fri Feb 17, 2006 8:44 am 
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Location: Canada
sarahjo, as far as i've heard, allergies don't call [editorial comment. "cause" I meant "cause"! :lol: ] fevers. i hope you figure out what is wrong soon!


Last edited by Helen on Sun Feb 19, 2006 11:17 am, edited 1 time in total.

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PostPosted: Sun Feb 19, 2006 9:54 am 
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We called the doctor today and he put her on clartin for enviromental allergies, we will try this, i just am just so frusterated that her allergist said that she was fine, and her doctor says different, how exhausting, who do you trust, anyways thanks for everything


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PostPosted: Sun Feb 19, 2006 11:02 am 
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Joined: Tue Mar 22, 2005 11:17 pm
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Location: Ottawa
In the beginning, it is a mystery and each piece of information is a clue. Each health care professional will view the situation from their vantage point and do their best to understand the situation.

You have had many different diagnoses and they were based the information that was available. As your daughter's diet was restricted and she still suffered symptoms, a new diagnoses is added. This does not mean that the old diagnoses where wrong, that is proven in the testing. She may be allergic to milk and have environmental allergies as well. She may be very sensative to many things, she may be in a reactive state until the allergens are removed or she may have a trigger thgat has not yet been eliminated.

Who do you trust? Your daughter. Listen to her and believe that she is telling the truth. Don't ever let people tell you she is looking for attention or that it will go away on it's own. Yourself, if it doesn't feel right, speak up. Don't leave the office with unanswered questions.

The Dr's, to a certain extent, they have a lot of knowledge in general but don't live with your daughter and know all of the excentricities of her life. Create a file of which Dr said what and bring it with you when you see a Dr. It will help you keep everything organised and will help them to understand the issues. Make sure all of the Dr's have access to each others files, take business cards and keep them with your file for referrence.

Good luck! :)


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PostPosted: Sun Feb 19, 2006 11:43 am 
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Location: Cobourg, ON
I am wondering why the allergist feels that she is not allergic but the pediatrican says that she is? Did the allergist do skin testing? What symptoms does she have when she eats milk products? Does the pediatrician think she is lactose intolerant or allergic? This must be very difficult for you. Could you ask the two doctors to discuss the diagnosis? Take care Sarahjo.


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PostPosted: Tue Feb 21, 2006 7:50 am 
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Her gastro, actually ordered the allery test and while that was out (it took 2 months for me to get the results, not saying the test took that long, just miss communication) in the mean time we went to visit the allergist, he had the results and didn't want to futher testing , he said everything looked good, the ped, and gastro, said her test was positive, the gastro, said just keep doing what I was, the ped, said we need to elminate everything with milk in it, The funny thing is that she doesn't even drink milk, then her said her IGE? was up and to start her on clartin,

confused yet? sorry (my keyboard got juice spilled on it, and only some off the keys work)


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PostPosted: Tue Feb 21, 2006 10:41 am 
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Joined: Fri Jan 06, 2006 8:22 pm
Posts: 154
Location: Georgia
sarajo
So sorry you are having to deal with this! :( I know it's tough to figure out, but it will be second nature to you soon enough. First, start with reading the old posts in the "milk allergy" section.

Ok, you've said the IgE (immunoglobulin E) is up. This test indicates that an allergic reaction is occurring. It does not specify which allergen is causing the reaction, just that something is amiss. Much like when you have an infection and "your white count is up." Could be foods or environmental allergies. Sometimes, irritated sinuses may cause a small fever before a true sinus infection develops. They are covering bases with the Claritin (environmental allergies.)

The skin testing (prick-testing) helps to identify certain allergens, and may have false-positives. It is sometimes done on small children, but usually not the whole panel, as they don't always cooperate until they are older (and their backs are too small for lots of pricks). The RAST testing (bloodwork) helps to identify certain allergens, and may have false-negatives, but not usually false positives. Neither test is 100%. Especially with GI (gastrointestinal) allergies.

Now, what test and what Doc is saying she is allergic to milk? I've read some of your previous posts, but am still unclear. You can ask your Doc for copies of tests (like allergies) when you go for the next visit. Keep a file. This makes it easier to track over time, or if you change Doc's or move.

Hang in there,
Daisy


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PostPosted: Tue Feb 21, 2006 11:44 pm 
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sorry to confuse you, her pediatrition and gastro says that she is allergic to milk, she has had the blood test done, that is how they found out,, she has had this fever since december 19 and we have been hospitilized, had strep throat, and RSV since then, so I am exhausted I trust her doctors, I am just feeling alone, she is my child and I am trying to do everything I can to help her, she has had doctors test her for many things and milk is the fist conclusive result I have gotten, so I want to make sure that my bases are covered as far as protecting her from any more illnesses, let me know if I helped you understand, thank you


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PostPosted: Wed Feb 22, 2006 12:25 am 
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Joined: Fri Jan 06, 2006 8:22 pm
Posts: 154
Location: Georgia
sarahjo
You are not alone. There are tons of parents out there feeling just like you. But you have been fortunate enough to find a website to discuss your fears, test results, shopping lists, etc...

Consider it a blessing that you have this diagnosis. This is not terminal; it can be fixed! You just have to be comfortable with avoiding her trigger, in this case...milk. I know that seems daunting to you now, but you will be a pro at reading labels soon enough. Just think of how healthy your diet will be now that you will be looking so carefully at what you eat. To me, if it has more than about 3 ingredients, I put it back down. I like simplicity and many convenience foods are just too full of stuff we don't really need anyway.

You are probably overwhelmed, not only from the most current diagnosis, but also from the stress of the last 2 years...not to mention Strep and RSV. Good heavens! :shock: (They would have had to check me in to the hospital for a meltdown! )

So what if your family thinks your going overboard? After 2 years, would they rather hear that she has some incurable disease? Diabetes? Krohn's perhaps? This is way better and especially since you haven't mentioned any anaphylactic reactions, there is probably a good chance that she will outgrow this in a few years.

And kuddos to her Gastro for running the RAST for milk. Took him long enough, but he got it! Some never do.

Take care of yourself, too. Nap when she naps,and don't feel guilty! Love those daytime catnaps, especially this time of year with the weather and all. (My dear Hubby thinks I'm hibernating this winter. His mistake for getting me a laptop for Christmas with a wireless connection! :lol: )

Sorry for the long post. Lots to say...
Daisy


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PostPosted: Wed Feb 22, 2006 12:38 am 
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Joined: Thu Sep 22, 2005 11:39 pm
Posts: 1141
Location: saskatchewan, canada
Sarahjo,

butter, butterfat, butter oil, buttermilk,
casein, all forms of caseinates,
cheese
cream
cottage cheese
curds
custard
ghee
lactalbumin
lactoferrin
lactulose
milk in all forms, include goats milk, evaporated, malted, modified
nisin
rennet casein
sour cream
sour milk
whey
yogurt

watch out for possible milk in
caramel
chocolate
flavorings (natural and artificial)
high protein flour
lactic acid (sometimes not milk derived, phone manufacturer of product.)
lactose
margarine
non-dairy products

I choose the "what is the ingredient" method as well. If I am unsure what an ingredient is I will research it, rather than assume it is not milk.

I am assuming here that your daughter is still in the hospital. I know someone who works in a hospital kitchen...and believe me even the hospital CANNOT feed an allergic patient. The kitchen staff are regular people who do not neccessarily understand "all the names of milk" or cross contaminaton, or allergies and how little can cause a reaction. I am suggesting (if you don't do this already) that you bring her food from home that you have prepared yourself NOT ANYWHERE NEAR MILK or people who do not understand the ins and outs of allergies. Even a plain boiled potato may have come into contact with a utensil with butter on it.


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