- Welcome to Food Allergy Support.
Posted by CMdeux
- January 21, 2014, 05:42:37 PMAnother means of vetting your food allergist (potential) is to use their name to suss out their background and training-- figure out where they did their allergy rotation, where they went for internship, etc-- who they are associated with. There are some BIG names and BIG institutions in terms of research top-guns. That's who you want, given a choice.
For example-- while I live in a small nondescript town on the west coast, I have a top-notch allergist. How do I know? (Well, I have pet "test" questions for food allergists, but that's another post.)
1. Med school background includes Mt. Sinai. And Sampson. ding-ding-ding-ding-ding!!
2. He's answered "ask the expert" questions over at AAAI's website. (winner again!)
3. He keeps in touch with his old homies-- like Sicherer et. al. He goes to meetings and works hard to stay current. He publishes (though heaven knows how he finds the time) and serves on committees/boards with other allergists.
For example-- while I live in a small nondescript town on the west coast, I have a top-notch allergist. How do I know? (Well, I have pet "test" questions for food allergists, but that's another post.)
1. Med school background includes Mt. Sinai. And Sampson. ding-ding-ding-ding-ding!!
2. He's answered "ask the expert" questions over at AAAI's website. (winner again!)
3. He keeps in touch with his old homies-- like Sicherer et. al. He goes to meetings and works hard to stay current. He publishes (though heaven knows how he finds the time) and serves on committees/boards with other allergists.
Posted by twinturbo
- January 21, 2014, 05:24:28 PMI know! And I apologize for still not having a clear answer. The other FAS member knows it was in Phoenix but doesn't remember the name of the doctor or practice. I did, however, take an initial look at the physician search at AAAAI.org. It's the best vetted listing of allergists so you don't end up getting a doctor who specializes in environmental allergies dabbling in food anaphylaxis. Not always but sometimes the two are mutually exclusive in terms of best known practices and up to date knowledge.
You're jammed for time I'll take another look today and see if I can sniff out a good one. Here's the link to the search in the meantime. Use geographical tab and try either zip code or state. See who is near you and maybe start sorting by insurance plan acceptance. http://aaaai.execinc.com/edibo/FindAnAllergist
You're jammed for time I'll take another look today and see if I can sniff out a good one. Here's the link to the search in the meantime. Use geographical tab and try either zip code or state. See who is near you and maybe start sorting by insurance plan acceptance. http://aaaai.execinc.com/edibo/FindAnAllergist
Posted by jenavy21
- January 21, 2014, 03:29:13 PMThank you Penny! Did you have a good experience? And I have found a lot of helpful women and information already!! I just wish I would have found them all sooner!!
twinturbo I am all for who to avoid!!!
twinturbo I am all for who to avoid!!!
Posted by twinturbo
- January 21, 2014, 10:46:47 AMI got the answer from the other Arizona member. I'm hoping she'll share the one she went to even though it was a horrible experience so OP doesn't end up at the same place unknowingly. 
Posted by Penny
- January 21, 2014, 03:51:51 AMI no longer live in Arizona - but when I did, I used Arizona Asthma & Allergy Institute. http://www.azsneeze.com/ They've got three offices in PHX including one in Glendale, which is N. PHX, closer to Anthem.
I'm glad you found this website. Listen to what the wise women here have to say! They came to my rescue years ago when I was diagnosed with adult-onset peanut allergy. Best of luck to you.
I'm glad you found this website. Listen to what the wise women here have to say! They came to my rescue years ago when I was diagnosed with adult-onset peanut allergy. Best of luck to you.
Posted by jenavy21
- January 20, 2014, 11:56:12 PMMacabre, Thanks so much!! Any recommendations would be great!! It's interesting how you said you started eating a lot more of it. That's what I did too. Cravings for things that had soy in it and then reaction found out soy and sesame. Then ate peanut butter for a week straight because I couldn't get enough of it. 7th day throat closed and we were at the hospital. Allergist told me (I may explain it wrong) but sometimes the body starts craving things almost like it is trying to fix it and then boom.....
twinturbo, The problem with her is if I said I needed it she or my Dad would give it, but I would have to be able to say that. I know they would call ambulance and use it if they found me. I think our biggest problem is just the area here. They have parrots on the property, lots of horses, cows, chickens, etc. Parrots in their house. So lot's of peanuts around...... My dad is pretty good about it. If I go over there won't take things out etc. Just lot's of allergens around.
I know my husband has started making a couple comments here and there. He is very supportive and does what he can. We have thought about looking in other areas as well for housing. But the area we want is about 2400 sq feet nice homes. Other areas would be like 1700.... So pretty big difference. And if he is able to stay in San Diego like we are hoping we would rather move right there instead of having to move again. We are still trying to wrap our heads around the possible move overseas and how that would be for me. I know my husband and I both agree we are trying to get out there ASAP, but at same time going to try to see allergist here ASAP as well.
We are trying to get into housing fast. And are putting more pressure that way. Luckily we have our own space over here so that helps. Trying to be more careful and stress it to her when I can. I'm thinking about bringing her with me to the allergist so they can stress it to her.... That was one idea I had.... And we have talked to our kids about it and told them if they eat peanut butter at school for lunch that is ok if the wash their hands and rinse mouth (I think it is actually sunflower butter at their school), but when they are at home or even at their grandparents they need mommy or daddy's permission first.
twinturbo, The problem with her is if I said I needed it she or my Dad would give it, but I would have to be able to say that. I know they would call ambulance and use it if they found me. I think our biggest problem is just the area here. They have parrots on the property, lots of horses, cows, chickens, etc. Parrots in their house. So lot's of peanuts around...... My dad is pretty good about it. If I go over there won't take things out etc. Just lot's of allergens around.
I know my husband has started making a couple comments here and there. He is very supportive and does what he can. We have thought about looking in other areas as well for housing. But the area we want is about 2400 sq feet nice homes. Other areas would be like 1700.... So pretty big difference. And if he is able to stay in San Diego like we are hoping we would rather move right there instead of having to move again. We are still trying to wrap our heads around the possible move overseas and how that would be for me. I know my husband and I both agree we are trying to get out there ASAP, but at same time going to try to see allergist here ASAP as well.
We are trying to get into housing fast. And are putting more pressure that way. Luckily we have our own space over here so that helps. Trying to be more careful and stress it to her when I can. I'm thinking about bringing her with me to the allergist so they can stress it to her.... That was one idea I had.... And we have talked to our kids about it and told them if they eat peanut butter at school for lunch that is ok if the wash their hands and rinse mouth (I think it is actually sunflower butter at their school), but when they are at home or even at their grandparents they need mommy or daddy's permission first.
Posted by Macabre
- January 20, 2014, 10:04:51 PMOh--what I didn't mention was that my food allergies are adult onset. In 2004, after we moved to Houston, I started eating a lot more shellfish. In 2005, BOOM--allergic. And to sesame, too.
It happens. It's awful. But it happens.
It happens. It's awful. But it happens.
Posted by Macabre
- January 20, 2014, 10:02:46 PMI've messaged two members, both of whom recently moved from Arizona with a link to this thread. They may be able to help with allergist recs.
Posted by twinturbo
- January 20, 2014, 08:07:40 PMAbout when to use the epinephrine... it's amounting to the same thing. The best chance for survival of anaphylaxis is earlier than later. I hear you about your mother. Totally understood. But what she's saying is that she'd use it in her judgment when it's needed which by definition of her own words is most likely too late. Epinephrine and anaphylaxis isn't a sure thing. That is what is making this a dicey situation. Short of waving a magic wand I don't think there's anything we can do to change your mom. But, maybe your husband can get through to her? Do you have his full support on this? Can he talk to her to ask her to cooperate for family's sake even if she doesn't believe in any of it. Put her personal feelings aside
So a plan moving forward because my first inclination would be to get your support. That is tough about the waiting list on housing. You're in the situation with all the details. Are you seeing any other options that aren't obvious to the rest of us because we only have partial information? You've got a lot to live for and you're only human.
So a plan moving forward because my first inclination would be to get your support. That is tough about the waiting list on housing. You're in the situation with all the details. Are you seeing any other options that aren't obvious to the rest of us because we only have partial information? You've got a lot to live for and you're only human.
Posted by jenavy21
- January 20, 2014, 07:34:16 PMFamily makes things so complicated. But my husband and I are talking about it. In AZ housing is not an option since he is not stationed here or AF. We are up in the Phoenix/Anthem area and are Tricare Prime. I know most places take Tricare, but not all take Prime. So I have to get referral first and go from there. I have kept copies of records to move with to help. The area we want in San Diego has a 16 month wait lis. So we made a very stupid decision to have our stuff shipped here. And then we are responsible for taking from here to CA. I would like to say that she means well, but she just doesn't think. I know it isn't intentional, but she has to start thinking. Part of her problem is that she doesn't understand how they can just develop. Same problem I have had, but I have had to accept it and allergist in NY said sometimes it just does.
Hubby and I are talking about it and trying to figure out what to do. Part of us has this one more reaction attitude and then the rest of us is saying don't want that to be too bad to recover from. So it's a lot of talking and texting and emailing as we try to sort this entire thing out.
And to clarify. I just reread Epi line.... She hasn't said she wouldn't use Epi to rescue someone. Just keeps saying that she doesn't think it is needed and if it was her she would never use it.
Hubby and I are talking about it and trying to figure out what to do. Part of us has this one more reaction attitude and then the rest of us is saying don't want that to be too bad to recover from. So it's a lot of talking and texting and emailing as we try to sort this entire thing out.
And to clarify. I just reread Epi line.... She hasn't said she wouldn't use Epi to rescue someone. Just keeps saying that she doesn't think it is needed and if it was her she would never use it.
Posted by twinturbo
- January 20, 2014, 06:21:43 PMWell, one step at a time. I'll send a private message to one of the members who can maybe recommend an allergist in Arizona. What are your housing options at this point? Because I believe everything you're relating to us and it's about as bad is it's going to get.
Back when I used military insurance it was only having to show my dependent ID. I know it's Tricare now but I haven't mastered that system. There's a few military families here they might be able to help recommend a way to make sure your records transfer as you need them to and how to make sure you see an allergist in the years to come.
I think it's time to escalate to get to California out of the immediate constant danger presented by someone who is constantly feeding or eating your allergens and has stated she will not use epinephrine to rescue anyone. Really, it's clear. I know your plans but plans changed. If the officer housing isn't available now can you get some off base stipend? I forget what it's called. We used to live in a civilian neighborhood that was military owned or subsidized.
Back when I used military insurance it was only having to show my dependent ID. I know it's Tricare now but I haven't mastered that system. There's a few military families here they might be able to help recommend a way to make sure your records transfer as you need them to and how to make sure you see an allergist in the years to come.
I think it's time to escalate to get to California out of the immediate constant danger presented by someone who is constantly feeding or eating your allergens and has stated she will not use epinephrine to rescue anyone. Really, it's clear. I know your plans but plans changed. If the officer housing isn't available now can you get some off base stipend? I forget what it's called. We used to live in a civilian neighborhood that was military owned or subsidized.
Posted by jenavy21
- January 20, 2014, 05:05:30 PMWe were in NY for over 4 years, but of course we didn't know about them when we got there. So we dealt with it towards the end of our time. A year of which I was pregnant so they didn't do much. We are now in AZ (temporarily) and hubby is in CA.... long story short when we came up with this plan it sounded good because he would be gone the first year and half.... of course things change and now we are waiting to get into officer housing (we will be on base in CA) in miramar. I am guessing we will be in AZ for about a year longer.
In AZ the kids and I are living in my parents guest house..... On one hand nice to be close to family..... On other hand.... My mom doesn't get it.... Hence the reaction I had in my car when she brought a handful of peanuts into the car. She has this thing that if she can't visibly see hives, it can't be that bad. And makes multiple comments about how she wouldn't use Epi. She seems to think that if she is eating it isn't that big of deal. Says she understands, but doesn't.... Has done things like gave my 2 kids (5 and 7) caramel apple covered in peanuts and peanut butter and cut it with me in kitchen.... My two know to wash hands and mouth after and when hubby reminded them of it she gave this look it wasn't a big deal. Then gives (14 month old) anythings she wants. I stopped the peanuts and she followed up with he has had peanut butter before ( I didn't know that). He has pretty bad eczema and sometimes gets rashes around his mouth. So I watch what he gets especially since he can't communicate when something goes wrong.
Either way..... She is a lot of my stress. Sees reaction having to go in mouth and that's it. My daughter had a bunny and we put him in a common area about a week ago, since then I am wheezing a ton. Very possibly the allergies.... But I am checking his food today since she got it. And afraid what I will find.....
After we get to CA we are hoping to be there for a while, hubby wants to go back to back to stay there. But might not happen..... Possibility of moving to Japan and not sure how I can do there..... If that happens it would be CA for a year, Japan for a year (if I can get cleared to go with) and who knows where after that for 2 or 3 years......
In AZ the kids and I are living in my parents guest house..... On one hand nice to be close to family..... On other hand.... My mom doesn't get it.... Hence the reaction I had in my car when she brought a handful of peanuts into the car. She has this thing that if she can't visibly see hives, it can't be that bad. And makes multiple comments about how she wouldn't use Epi. She seems to think that if she is eating it isn't that big of deal. Says she understands, but doesn't.... Has done things like gave my 2 kids (5 and 7) caramel apple covered in peanuts and peanut butter and cut it with me in kitchen.... My two know to wash hands and mouth after and when hubby reminded them of it she gave this look it wasn't a big deal. Then gives (14 month old) anythings she wants. I stopped the peanuts and she followed up with he has had peanut butter before ( I didn't know that). He has pretty bad eczema and sometimes gets rashes around his mouth. So I watch what he gets especially since he can't communicate when something goes wrong.
Either way..... She is a lot of my stress. Sees reaction having to go in mouth and that's it. My daughter had a bunny and we put him in a common area about a week ago, since then I am wheezing a ton. Very possibly the allergies.... But I am checking his food today since she got it. And afraid what I will find.....
After we get to CA we are hoping to be there for a while, hubby wants to go back to back to stay there. But might not happen..... Possibility of moving to Japan and not sure how I can do there..... If that happens it would be CA for a year, Japan for a year (if I can get cleared to go with) and who knows where after that for 2 or 3 years......
Posted by twinturbo
- January 20, 2014, 11:09:36 AMAre you living on base or off? Second question are you using base medical or private practice docs off base? Third, how often are you getting stationed in different places, how often do you move?
I'm a brat moved every 1-3 years, lived on/off bases, had a lifetime of changing docs hardly ever got the same doc or medical facility more than a year of my life at a time. Thinking you may need to structure smartly around that rotating care for long term stability.
I'm a brat moved every 1-3 years, lived on/off bases, had a lifetime of changing docs hardly ever got the same doc or medical facility more than a year of my life at a time. Thinking you may need to structure smartly around that rotating care for long term stability.
Posted by Macabre
- January 20, 2014, 08:10:34 AMLucky. You never know where it's going to go. It could cascade downward ion minutes.
You may be experiencing biphasic reactions. They come back. Or it may be that the Benadryl isn't enough to handle it. But you can have biphasic reactions with Epi. That's why it's important to call 911 after Epi for transport to the ER and to stay for four hours (though DS has has a biphasic reaction that took longer--and that was after getting the Epi and being at the ER. We went twice that day.)
In that December reaction, my symptoms started returning after I got to the ER. They gave me more epinephrine.
For both if my reactions, I had uterine contractions for days.
Also docs will often prescribe steroids and Zantac after anaphylaxis. Zantac blocks a different histamine receptor than Benadryl. (You can take it concurrently with Benadryl, but it is no sub for Epi.)
You may be experiencing biphasic reactions. They come back. Or it may be that the Benadryl isn't enough to handle it. But you can have biphasic reactions with Epi. That's why it's important to call 911 after Epi for transport to the ER and to stay for four hours (though DS has has a biphasic reaction that took longer--and that was after getting the Epi and being at the ER. We went twice that day.)
In that December reaction, my symptoms started returning after I got to the ER. They gave me more epinephrine.
For both if my reactions, I had uterine contractions for days.
Also docs will often prescribe steroids and Zantac after anaphylaxis. Zantac blocks a different histamine receptor than Benadryl. (You can take it concurrently with Benadryl, but it is no sub for Epi.)
Posted by jenavy21
- January 19, 2014, 11:33:30 PMThank you all for your help. I am very glad I found this site and wish I would have known about it sooner. For the most part I don't eat bread unless it is homemade, everything has soy. I was so excited to find the pita bread that I did at costco. They were having a demonstration and when I read the label it seemed safe. I definitely didn't realize that sesame didn't need to be labeled. The more I have been doing research today the more upsetting it is that everything doesn't need to be labeled.
I think the one thing that has me confused about epi and benadryl. If the reaction eventually passes by using Benadryl does that just mean it wasn't that bad of a reaction or is it just a matter of getting lucky? Also is that why sometimes reaction feels like it comes back when meds wear off?
I think the one thing that has me confused about epi and benadryl. If the reaction eventually passes by using Benadryl does that just mean it wasn't that bad of a reaction or is it just a matter of getting lucky? Also is that why sometimes reaction feels like it comes back when meds wear off?