2 year old just diagnosed. Need help.

Posted on: Fri, 09/06/2002 - 2:16pm
Elizasmom's picture
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Joined: 09/07/2002 - 09:00

pMy 2 year old daughter has suffered from food allergy to cows milk (and melons, kiwi and mango) since she was first exposed. She can't even touch milk without breaking into hives. I had begun to live with that reality, but was skin tested for the first time yesterday, and the results were devastating. She tested positive for peanut, soy, tree nuts, cotton seed, shellfish and soy. This is in addition to everything else I mentioned. I don't know what to feed her and I feel like she's going to die. What if the epipen gets too hot and fails or malfuctions??? Is there any hope? Could it be a false positive? They measured hives on her back. I think it was a "3", but I don't know what to make of that. Are all peanut reactions severe and do they all involve breathing trouble? Might she just get a rash? My husband's family is never going to take it seriously. They have this mentality that she needs to have a little bit to "get used to it"./p

Posted on: Fri, 09/06/2002 - 9:54pm
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Joined: 06/20/2001 - 09:00

I am so sorry for what you are going through! My 2 1/2 year old was diagnosed about a year ago and it was so overwhelming and scary! Reading your post really hit home of me because I was always focused on the fact that my son could die! It gets a little less overwhelming with time, but it is still scary. Just to answer a couple of your questions, you have to be prepared for a peanut reaction that involves breathing problems/anaphalaxis, but not all of them do. My son has luckily only had hive reactions. We keep the epi-pen in his diaper bag and make sure it is always with us. That way, we can make sure the temperature is controlled somewhat (e.g., don't leave it in the car!). When we go out all day where it is hot, we sometimes throw an ice pack into the diaper bag (not right next to the medicine kit) to keep the temperature cooler. There is a web site for Parents of Food Allergic Kids (POFAK). There is a long waiting list, but you might want to get on it. They may have tips on what to eat. And join FAAN (Food Allergy and Anaphalaxis Network) for more food ideas and general information. Good luck!

Posted on: Sat, 09/07/2002 - 1:25pm
AlwaysAvoidAnaphylaxis's picture
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Joined: 06/23/2001 - 09:00

It is always easier for me to try to help someone else, other than myself!
First of all, take a deep breath. Your child needs you. And get DH in the picture from the start. You CAN do it. Get a bunch of epipens and always carry 2 or 3 with you so one will always work. Then start making your home a safe place for your child by trying to eliminate as many of the food allergens that you feel you can. Then start dividing up the work with DH and start finding foods and food options that your child can eat and that you can enjoy. Glad wheat wasn't on the list. Fortunately, almost all will eventually be outgrown except for PA/TNA/shellfish but the PA/TNA can be outgrown sometimes, so there is hope! [url="http://www.foodallergy.org"]www.foodallergy.org[/url] has some great cookbooks so that you can make things you can all enjoy. And, start educating your child, even though they are 2, to start learning how to keep herself safe and that she only eats food from home. That is a great rule for school!
Even though it ain't gonna be easy, be strong! it does get easier over time.

Posted on: Sat, 09/07/2002 - 10:12pm
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Joined: 02/27/2002 - 09:00

Sorry to hear about your daughter's allergies. My 3 year old (diagnosed at 1) is allergic to peanuts, tree nuts, milk, eggs and shellfish. I understand your concerns about your in-laws. My FIL made the statement one day before eating pizza - "Oh I'm going to be in alot of pain, I forgot to take a Beano. I'm allergic to cheese." I bit my tongue but I felt like saying Oh well the next time Sam has a reaction to milk I'll be sure to give him a Beano instead of the epi-pen. I was so mad. When we got home I told my husband I think you better talk to your parents again about the allergies. I said what your father said totally undermines the seriousness of Sam's allergies and that's exactly what we needed in front of the rest of your family who doen't seem to concerned either. This coming from a family who's own son - my husband - is anaphylactic to bees and who has had to use the epi-pen and be rushed to the hospital on several occassions!
The food allergy network does have alot of information and they have a video - It Only Takes One Bite and some little booklets on anaphalaxis, peanut and other allergies. These might be some useful tools to use on your in-laws, though I have to admit I haven't tried that yet. They also have wallet size laminated cards and refrigerator magnets that list words to look for on ingredient labels for the different allergies. Their cookbooks are also very good.
Be sure to look under the thread in this board for Unexpected Sources of Peanuts, the information is very surprising.
Good Luck!

Posted on: Sun, 09/08/2002 - 5:13am
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Joined: 05/21/2001 - 09:00

Hi Elizasmom,
It does get easier, educate yourself on food allergy prevention, my son's first skin tested positive for everything they tested him on except corn and the control. Some welts were 9mm. Thankfully some were false positives and some he out grew. It takes time and doctors advice on how to proceed.
Lots of label reading-and some time spent collecting "safe" recipes. focus on getting set to keep child safe- even if you have to be firm with relatives who don't quite "get it." BTW my son is 12 and has survived being among the ones with highest risk for life-threatening reactions. Take time for yourself to work though the fear feelings.....
nopeanuts, what do you mean the POFAK has long waiting list. I've been getting posts for years on this- I've got a good handle on what my son can eat- but was getting it to help find recipes for other members of support group I'm in. I wonder if I should stop getting it so person more in need of it can benefit.
Take care and stay safe.
Jandy

Posted on: Mon, 09/09/2002 - 4:28am
BENSMOM's picture
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Joined: 05/20/2000 - 09:00

Hi Elizasmom. I'm also Eliza's mom, but it's my son Ben who's allergic. Skin tests have a high rate of false-positives, so your daughter may not be allergic to all of that stuff. I don't suggest fooling around with peanuts, nuts or shellfist especially. You might want to get her a CAP RAST blood test to help confirm what she's really allergic to. Chances are she's been eating things with soy or cottonseed oil already so if she hasn't had a problem, she may not be allergic. An no, not all peanut reactions involve breathing. There is probably a higher rate of people with breathing reactions in themselves or their children on these boards than in general. That's because they need the most support. I know adults who are allergic to peanuts who have never had a breathing problem. Carry your epipens and be prepared.

Posted on: Mon, 09/09/2002 - 11:37am
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Joined: 02/22/2002 - 09:00

Elizasmom, I know how you felt,when ds was 1yr we discovered he was allergic to peanuts,soy,milk and eggs, I too thought what do you feed this child. He nursed but after weaning he now drinks rice milk. I found recipes from [url="http://www.fatfree.com"]www.fatfree.com[/url] and also this wonderful cookbook What's to Eat.Ds is 3 now and this site has helped me alot. Check out the recipes on this site too.You're with people who understand and don't think you're over reacting.

Posted on: Mon, 09/09/2002 - 12:34pm
Elizasmom's picture
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Joined: 09/07/2002 - 09:00

Thanks for all your support. Eliza still nurses (she just turned two!). Her doctor suggested that I wean her to soy milk (before we knew about they soy allergy). I'm so glad I didn't do it. We are thinking about rice milk now, but she's not interested. She is a very picky eater and is so limited by her allergies that I am reluctant to wean. With breast milk, she is chubby and growing well. I can't even imagine what would have happened to her if I had nor nursed her. Both regular and soy formula would have made her sick.

Posted on: Mon, 09/09/2002 - 3:11pm
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Joined: 02/22/2002 - 09:00

Glad to hear your're still nursing. Matthew nursed until a few months ago and he weaned when he was ready.

Posted on: Tue, 09/10/2002 - 1:47pm
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Joined: 08/14/2002 - 09:00

I think it is great that you are breastfeeding your daughter. I breastfed my twins until they self weaned, and breastfed my older daughter until she weaned. My older daughter's name is Eliza, too, by the way!
You have good taste in names!
Beth
Eliza 6 1/2 (no known allergies)
Audrey and Lillian 21 months (peanut, egg, soy, tree nuts?)

Posted on: Tue, 09/10/2002 - 1:50pm
audreylilliansmom's picture
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Joined: 08/14/2002 - 09:00

Elizasmom, one more thing I forgot to mention. There is an episode of 48 Hours that is set to air on 9/20 about food allergies. It is called "The Silent Killer." Maybe you could ask everyone to watch it that ever cares for Eliza while you are away, or that doesn't "get it". One of the families that posts on POFAK (Yahoo group called Parents of Food Allergic Kids) is featured on the special.
Good luck!
Beth

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