New and Scared

Posted on: Wed, 05/24/2006 - 12:15pm
melissiabeth's picture
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Joined: 05/24/2006 - 09:00

My 19 month old daughter Lilly tested positive during skin testing for a peanut allergy. Her doctor had recommended she get skin testing for her ezcema. Luckily she was not allergic to anything else. She did not receive a blood test and I did not get any written info on peanut allergies- basically i was told that i should carry around an epi pen and read labels. I have never given her peanut butter but have realized that she has eaten things that with the manufactured on the same equipment label. She has always had ezcema and in the last month or so has had about 4 really small bouts of hives- SHe had had a bit of chocolate chip cookie and a bit of an oatmeal creme pie the night before but other then that the other incidents I can't connect to anything. The hives went away with benadryl. I have had a severe allergic reaction to 2 antibiotics before and have an epi pen myself- and know how scary it is. I'm so frightened for her and I'm not sure how I go about finding out about less obvious foods- that aren't labeled etc. Does anyone have any advice. Luckily she hasn't had a severe reaction yet, but I am anxious, fearful, and I don't want to send her to the babysitters or let her leave my sight. Any advice???

Posted on: Wed, 05/24/2006 - 11:29pm
Greenlady's picture
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Joined: 06/30/2004 - 09:00

Hello and welcome! I know that it doesn't sound like it right now, but the fact that you've caught the peanut allergy so early is really good news. Because of it, your daughter may have a better chance of outgrowing the allergy. And because she is so young, you have more control over what she is exposed to, until you get more comfortable with things.
First off, there is nothing wrong with avoiding babysitters and restaurants for a while until you feel more in control. Because of recent labeling laws, if a food has a peanut ingredient, then it must be on the label. You should read every label every time, since practices change.
"Hidden" peanuts often occur through cross-contamination, like getting peanut butter in a jelly jar. Many families here get rid of all peanut products just for that extra margin of safety.
Once you get used to checking out foods and get a pantry full of "safe" foods, you can start thinking about other things, like babysitters and restaurants. One step at a time, and there is plenty of help here.
I know things are scary right now, but soon caring for your child's allergy will be as natural as putting her in a car seat. A bit of extra trouble, but worth it!

Posted on: Thu, 05/25/2006 - 12:37am
Greenlady's picture
Offline
Joined: 06/30/2004 - 09:00

Hello again! I was re-reading your post and realized that you might not be able to avoid the babysitters because of work, etc. If that is the case, then I would make sure they are comfortable using the epipen, that there is no chance of cross-contamination (e.g., pb on the table), and that they only feed your daughter the food you send and/or approve.
Another good resource that you can show them is a video called "It Only Takes One Bite", which explains the epipen and how serious food allergies are. You can order it from the Food Allergy and Anaphylaxis Network (FAAN). If you haven't found them, they are another great resource for the newly-allergic.
FAAN website: [url="http://www.foodallergy.org/"]http://www.foodallergy.org/[/url]
video: [url="https://www.foodallergy.org/shoppingcart/cgi-bin/msascartlist.dll/ProductInfo?productcd=DVDBIT"]https://www.foodallergy.org/shoppingcart/cgi-bin/msascartlist.dll/ProductInfo?productcd=DVDBIT[/url]
Hope this helps! Remember to take it all in a little at a time. You will do just fine.

Posted on: Fri, 05/26/2006 - 11:36pm
melissiabeth's picture
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Joined: 05/24/2006 - 09:00

Thank you for the welcome! I'm really praying for her to outgrow them. Its getting easier by the day I suppose- It's really really scary. We've decided to go peanut free in our house and my mom and dad have decided to. My daughter goes to a home daycare and I have explained everything to her babysitter and how to use the epi pen and how lilly can't share food and about cross contamination- I'm still worried. She assured me that no one will eat peanut products when lilly is in her home but I am worried that her school aged grandsons occasionally eat pj sandwiches. I'm afraid that they are going to touch something and the next day lilly is (she's 19 months she touches everything)going to have a reaction. I'm going to talk to her aobut this again when on tuesday when we return to the babysitter. Thank you for reading my rambling! It's so assuring to know that other families are dealing with this also.

Posted on: Tue, 05/30/2006 - 1:12am
amartin's picture
Offline
Joined: 02/22/2006 - 09:00

Hi there. I also have a 19 month old PA child. He was diagnosed this last February. I just wanted to add that you may want to consider a blood test (RAST). I've been told that the skin prick produces false positives. Also, the blood test would give you an idea of the class (severity) of the allergy. This doesn't indicate what type of reaction they may have, but would give you an idea of where your child stands. With my son, we were told that if his RAST came back at less than 5 (which I believe is a class 1 or 2), then he stood a fairly good chance of outgrowing the allergy. Unfortunately for us, he came back at 42, which is a class 4. He had three anaphylactic reactions (hives, flushing, vomiting) before we determined what was going on. I am glad we have a grasp on this, but it still is the scariest thing I have ever dealt with. I would give anything to take this from him. With that being said, it really does get more manageable (although I am not going to say it gets much easier). At first, those close to me thought I was over-reacting, but through the sharing of information, they now realize the severity of the situation as well. It just took time for it to sink in. The good thing about this early diagnosis is that they will never know the difference. This is the way their lives are and is what they will always be used to. My daughter on the other hand really misses PB & J, but she'll get over it, plus she can sneak them at my parents house.
Best of luck to you.

Posted on: Tue, 05/30/2006 - 1:15am
amartin's picture
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Joined: 02/22/2006 - 09:00

One more quick thing... you may want to consider an allergist that specializes in Pediatrics. Our Pediatrician completely blew off our son's first three reactions. It wasn't until I (thankfully!) referred ourselves to an allergist that we got to the bottom of what was going on. The information and plans provided by the allergist were invaluable.

Posted on: Tue, 05/30/2006 - 1:47am
melissiabeth's picture
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Joined: 05/24/2006 - 09:00

Thank you. I asked the allergist for the blood test and he said she had a pretty severe reaction to the skin prick I see no reason to subject her to another test. Even my pediatrician said that I should get both when she originally spoke to me about getting her tested because of her ezcema. I actually have an appointment in August to an allergist at one of the children hospitals here- I only went to the allergist i went to because her ezcema was so bad I didn't think we should wait- Every allergist at the major hospitals here takes like 5 motnhs to get an appt. I think I will still keep the appt. in August. Thank you for you advice!

Posted on: Wed, 05/24/2006 - 11:29pm
Greenlady's picture
Offline
Joined: 06/30/2004 - 09:00

Hello and welcome! I know that it doesn't sound like it right now, but the fact that you've caught the peanut allergy so early is really good news. Because of it, your daughter may have a better chance of outgrowing the allergy. And because she is so young, you have more control over what she is exposed to, until you get more comfortable with things.
First off, there is nothing wrong with avoiding babysitters and restaurants for a while until you feel more in control. Because of recent labeling laws, if a food has a peanut ingredient, then it must be on the label. You should read every label every time, since practices change.
"Hidden" peanuts often occur through cross-contamination, like getting peanut butter in a jelly jar. Many families here get rid of all peanut products just for that extra margin of safety.
Once you get used to checking out foods and get a pantry full of "safe" foods, you can start thinking about other things, like babysitters and restaurants. One step at a time, and there is plenty of help here.
I know things are scary right now, but soon caring for your child's allergy will be as natural as putting her in a car seat. A bit of extra trouble, but worth it!

Posted on: Thu, 05/25/2006 - 12:37am
Greenlady's picture
Offline
Joined: 06/30/2004 - 09:00

Hello again! I was re-reading your post and realized that you might not be able to avoid the babysitters because of work, etc. If that is the case, then I would make sure they are comfortable using the epipen, that there is no chance of cross-contamination (e.g., pb on the table), and that they only feed your daughter the food you send and/or approve.
Another good resource that you can show them is a video called "It Only Takes One Bite", which explains the epipen and how serious food allergies are. You can order it from the Food Allergy and Anaphylaxis Network (FAAN). If you haven't found them, they are another great resource for the newly-allergic.
FAAN website: [url="http://www.foodallergy.org/"]http://www.foodallergy.org/[/url]
video: [url="https://www.foodallergy.org/shoppingcart/cgi-bin/msascartlist.dll/ProductInfo?productcd=DVDBIT"]https://www.foodallergy.org/shoppingcart/cgi-bin/msascartlist.dll/ProductInfo?productcd=DVDBIT[/url]
Hope this helps! Remember to take it all in a little at a time. You will do just fine.

Posted on: Fri, 05/26/2006 - 11:36pm
melissiabeth's picture
Offline
Joined: 05/24/2006 - 09:00

Thank you for the welcome! I'm really praying for her to outgrow them. Its getting easier by the day I suppose- It's really really scary. We've decided to go peanut free in our house and my mom and dad have decided to. My daughter goes to a home daycare and I have explained everything to her babysitter and how to use the epi pen and how lilly can't share food and about cross contamination- I'm still worried. She assured me that no one will eat peanut products when lilly is in her home but I am worried that her school aged grandsons occasionally eat pj sandwiches. I'm afraid that they are going to touch something and the next day lilly is (she's 19 months she touches everything)going to have a reaction. I'm going to talk to her aobut this again when on tuesday when we return to the babysitter. Thank you for reading my rambling! It's so assuring to know that other families are dealing with this also.

Posted on: Tue, 05/30/2006 - 1:12am
amartin's picture
Offline
Joined: 02/22/2006 - 09:00

Hi there. I also have a 19 month old PA child. He was diagnosed this last February. I just wanted to add that you may want to consider a blood test (RAST). I've been told that the skin prick produces false positives. Also, the blood test would give you an idea of the class (severity) of the allergy. This doesn't indicate what type of reaction they may have, but would give you an idea of where your child stands. With my son, we were told that if his RAST came back at less than 5 (which I believe is a class 1 or 2), then he stood a fairly good chance of outgrowing the allergy. Unfortunately for us, he came back at 42, which is a class 4. He had three anaphylactic reactions (hives, flushing, vomiting) before we determined what was going on. I am glad we have a grasp on this, but it still is the scariest thing I have ever dealt with. I would give anything to take this from him. With that being said, it really does get more manageable (although I am not going to say it gets much easier). At first, those close to me thought I was over-reacting, but through the sharing of information, they now realize the severity of the situation as well. It just took time for it to sink in. The good thing about this early diagnosis is that they will never know the difference. This is the way their lives are and is what they will always be used to. My daughter on the other hand really misses PB & J, but she'll get over it, plus she can sneak them at my parents house.
Best of luck to you.

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