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Topic Summary

Posted by: jenavy21
« on: January 31, 2014, 01:42:45 PM »

They are testing for birds as well to make sure it isn't a pet thing.  And in the mean time, my parents are switching their food to peanut free to see if that makes a difference.  We have not ruled out that it could be a pet thing, but given past history and what we know are allergies for certain, their seed seems more probable.  I know my mom cleaned out their cages yesterday (big cage) so we will see.   I am on a daily antihistamine for H1 and for H2 right now with Benadryl as needed.  But because I am staying on that for the time being, he can't do skin testing.  Once I get some of this down we are going to try to stop one and then the other so I can be off of it for at least a week before follow up.  That way he can do skin testing to answer questions and then we will cross challenges next if needed. 

The original reaction I had, several years ago, was when I was eating sesame seeds and soy sauce.  It was no surprise those came back positive.   I am being extra careful and read all the notes and suggestions about sesame to make sure to avoid it completely to rule that out.  I personally believe nuts are more likely the problem, but doing everything to be on safe side. 

It's funny because we thought this was best thing for us to be here.  lol  Never could have imagined that it wouldn't be the safest place for me.  But we are trying to do the best we can.  My parents have definitely had a chance to see how scary the reactions can be and are doing everything to help me figure it out.  Luckily I will get to see my hubby this weekend so we can try to figure more of it out.

I will keep the Neocate in mind.   I am hoping that we can try to control the environment and be extra cautious and figure this out.  I took my kids to a hockey game last night and surprise there were lot's of peanuts.  Something I hadn't thought about.  I was wheezing before I even knew they were there.  But in that case I was able to take Benadryl and change where we were and it was fine.  So things like that I am just going to avoid for the next month.  We will have lot's of movie nights and game nights at home!  Luckily my kids are still young and enjoy spending time with mommy!! 
Posted by: CMdeux
« on: January 31, 2014, 01:22:46 PM »

It would give you zero contamination risk from food prep, that's for sure-- without being there to see, it's hard to know if that is necessary...

but yes, worth consideration, I think.
Posted by: twinturbo
« on: January 31, 2014, 12:06:25 PM »

There's one method that might help you towards pinning down your allergens or at least eating with less likely contamination. Neocate.

Neocate is a medical food with all essential nutrients you may have heard of the infant formula with the same name. There's a version for adults. I'm not saying be on it forever but to hold your food source as a control it could be useful. It would be pretty hardcore for a month or two but if you can do it there might be some use as you add foods back one at a time.

I've had to do it with one of my kids it isn't fun. But it is one possible option.
Posted by: rebekahc
« on: January 31, 2014, 12:47:05 AM »

I'm pretty sensitive to environmental peanut exposure and I'm positive I would be having a terrible time living where you do.  My eyes and lips swell, I wheeze, my face flushes, I get hives on exposed skin, itchy throat, etc. just from being in the same room with a kid eating a PB&J sandwich.  It seems the birds eating peanuts and cracking the shells creating lots of peanut dust that then gets blown around in the wind would be a much more intense exposure.

When I react from environmental exposure, I remove myself from the area and see if symptoms subside before considering epi.  They always have.  For you, it's more difficult because you can't really escape it.  I would suggest showering to remove residue, but I'd be afraid the steam and heat could make your symptoms worse.  Any chance you can get away from your parents' place for a few days and see how your reactions go?
Posted by: lakeswimr
« on: January 30, 2014, 04:14:26 PM »

If it is the birds she ought to get on a daily antihistamine for now and maybe an inhaled steroid and albuterol as needed.  I agree, it sounds very complicated. 

I think even if the situation is being figured out at this time, she needs to know exactly what to do if such and such happens. 

Posted by: CMdeux
« on: January 30, 2014, 03:48:07 PM »

Again, though-- this is clearly a work in progress with the allergist, and also with the living situation (she's living in a place where she KNOWS that it's not really "safe enough" but currently doesn't have a better option at the moment-- she's living in a place that breeds exotic psitticines-- parrots).  So "get the birds away from you" isn't a solution-- moving is the only real answer if that turns out to be the problem, and she has a baby and a deployed spouse, and is on a waiting list for .gov housing.  At least where she is, she has family to help her out and she's not completely alone (also not good in this situation as sole caregiver).

Fluid situation-- that's how I read it.  The close follow-up with the allergist is a good sign, I think, and she DID cover a lot of territory with the allergist.  It's just that they really aren't (yet) in a position to judge what a solid action plan is eventually going to look like.

I think Jenavy is doing the best that she can, and I'm thinking that even if her allergist isn't perfect, he's probably better than 90% of what's out there.   :heart:

Posted by: lakeswimr
« on: January 30, 2014, 03:41:49 PM »

Quote from: jenavy21 on January 30, 2014, 01:01:11 PM
For the most part we do everything from scratch.  No seasonings at all.   The only herbs I use are fresh grown.  I do use salt on occasion and pepper.  We do use real butter and for the most part stay away from oils (olive oil on occasion) and there is a canola mayonnaise I have used before but not recently.  While we know the sesame is complicated, he really does believe the problem is more with nuts.  Some of these reactions are happening more on inhaled and they didn't before.   But because where we are living, there are nuts all over that it is possible I am just being over exposed and making problem worse, which could account for major increase in reactions.  Also since I am the one who does most of the cooking, we really have little room for cross contamination.  Our home is a nut free home.  And while my kids do eat cereal on occasion and other snacks, we make sure not to get anything with nuts etc in them. 

We will be able to compare blood levels to those drawn a couple years ago, so hopefully that will give us some insight as well.  He REALLY wants to do the skin test, but we are trying to figure out how to get me there.  My gut instinct says this is a nut issue.  And because they are everywhere around me it is just getting worse.  I could be wrong but I think the peanut is going to come back significantly elevated compared to before.  But we will find out.

When it comes to injecting.   I have had 3 reactions now in past week, not from eating anything.  I tried staying away from parents house to see if that helped some and didn't notice much.  So tried to eat dinner there last night and after being inside for about 30 mins, reaction started.  I took the liquid children's benadryl and pepcid as soon as I felt anything and my throat and chest relaxed.   I did get barky cough and have palpitations after and very funny feeling in chest.  But I didn't use Epi because the other symptoms relaxed.  I am thinking that I was dehydrated from blood draw earlier and that led to some of it.  But in a case like that would you use Epi?   The grading chart doesn't help me much at that point because I am not feeling tightness anymore.   And that is why I am kind of stuck.  Yes there are birds in their house, but they are also outside my house.  So really hard to get completely away.

Are you sure it wasn't a reaction to the birds in their house and not to food?  What you describe is how I feel when I'm in a pet store.  Having birds *outside* one's house is not likely to cause a reaction in a person allergic to birds.  Having a bird IN the same house, yes, that can certainly cause a reaction.  I'm very allergic to birds. 

The plan we have is that if we know or suspect my child is having a reaction to a food and he has any  of the symptoms listed on his emergency plan we epi.  Certainly we epi for throat tightness and chest tightness!  If you think you are having a food reaction you should epi for those symptoms.  Every emergency plan would call for the epi for either of those symptoms BY THEMSELVES if it was from food!  The fact that you do not have a written plan concerns me.

Benadryl has no life saving capabilities.  It is for comfort only and for seasonal allergies.  It can't stop anaphylaxis that is going to progress from progressing. 


If you are allergic to sesame and you are not avoiding it 100% by taking the steps I mentioned in my post then you can be having reactions to sesame.  Are you certain you reacted to sesame in the past?  If you are allergic to it you should be avoiding it 100%.  There is no way to tell if your sesame allergy is more or less serious than nuts.  Past reactions are not a reliable indicator of what future reactions will be like.  If you are allergic to sesame you could have a severe reaction to it even if  your past reactions were not that severe.  If you are having mystery reactions I'd start with being extra careful with known allergens.  I'd also avoid pets that cause you issues. 
Posted by: lakeswimr
« on: January 30, 2014, 03:32:08 PM »

Quote from: CMdeux on January 30, 2014, 09:31:04 AM
Well, but our allergist has never "given us" an emergency action plan in writing, either-- simply gone over the anaphylaxis grading chart, discussed which symptoms merit immediate epi, which ones merit wait-and-see-- assuming NO known exposure, I mean.

With known exposure we epi either way.


I do think that fully vetting all of your basic ingredients with some phone calls to manufacturers is a good idea.  If you post brands/sizes in Manufacturers here, others may be able to help you (or confirm what CSR's tell you with separate phone inquiries).

I think all allergist should give their patients a clear, written emergency plan.  If the grading chart works for you that's a written plan.  Giving nothing in writing and telling people to go with their gut is a red flag in my opinion or not the standard of care I would expect from a good allergist.
Posted by: CMdeux
« on: January 30, 2014, 03:03:35 PM »

Yes, I understand-- and it makes complete sense that he's leaving it more or less up to you to determine what to do in an individual kind of way, given the uniqueness of your situation.    Do study that anaphylaxis grading chart, though-- and kind of have a dividing line in YOUR mind that tallies with that-- some symptoms are in a grey area, for sure-- but the ones that impact blood pressure and breathing, not so much.

ANYTHING that is in that life-threatening zone, you really have to use epinephrine.   :-/  Yes, spontaneous recovery happens more often than not even with those-- but if you get it wrong, you're dead, and if you delay too long, same story-- you can be unrecoverable by that time.  KWIM?

Frequency makes it so hard emotionally to actually DO that, though.  I know.
Posted by: jenavy21
« on: January 30, 2014, 02:29:02 PM »

That's the trigger we are trying to find.  If it is in fact nuts.  And I have gotten that sensitive from over exposure.  It explains a lot.  If it is not then something is missing.  So in meantime I am just trying to avoid best I can and writing all down so he can see if he can help make the connection.  The breed parrots on their property and have TONS of other animals (horses, cows, chickens, etc etc etc)  Yes they have a lot of land, but for me where ever I go I am always around that stuff.  So in meantime Trying to determine the trigger.  If it is in fact nuts then we will have to figure something out.  He said yes people can be that sensitive, but not as common.  So it is possible that it is peanut and tree nut, which would make it even more stuff around me that shouldn't be.  You would have to see their property to understand.  It isn't a normal residential community.  They have a lot of land.  And this normal area for me to be as we have always lived in a residential community.   
Posted by: twinturbo
« on: January 30, 2014, 01:15:31 PM »

Qualified yes. On paper those are 2 systems, and with respiratory with known history that's an automatic. Yet it doesn't make sense that you'd have to do it this often.
Posted by: jenavy21
« on: January 30, 2014, 01:01:11 PM »

For the most part we do everything from scratch.  No seasonings at all.   The only herbs I use are fresh grown.  I do use salt on occasion and pepper.  We do use real butter and for the most part stay away from oils (olive oil on occasion) and there is a canola mayonnaise I have used before but not recently.  While we know the sesame is complicated, he really does believe the problem is more with nuts.  Some of these reactions are happening more on inhaled and they didn't before.   But because where we are living, there are nuts all over that it is possible I am just being over exposed and making problem worse, which could account for major increase in reactions.  Also since I am the one who does most of the cooking, we really have little room for cross contamination.  Our home is a nut free home.  And while my kids do eat cereal on occasion and other snacks, we make sure not to get anything with nuts etc in them. 

We will be able to compare blood levels to those drawn a couple years ago, so hopefully that will give us some insight as well.  He REALLY wants to do the skin test, but we are trying to figure out how to get me there.  My gut instinct says this is a nut issue.  And because they are everywhere around me it is just getting worse.  I could be wrong but I think the peanut is going to come back significantly elevated compared to before.  But we will find out.

When it comes to injecting.   I have had 3 reactions now in past week, not from eating anything.  I tried staying away from parents house to see if that helped some and didn't notice much.  So tried to eat dinner there last night and after being inside for about 30 mins, reaction started.  I took the liquid children's benadryl and pepcid as soon as I felt anything and my throat and chest relaxed.   I did get barky cough and have palpitations after and very funny feeling in chest.  But I didn't use Epi because the other symptoms relaxed.  I am thinking that I was dehydrated from blood draw earlier and that led to some of it.  But in a case like that would you use Epi?   The grading chart doesn't help me much at that point because I am not feeling tightness anymore.   And that is why I am kind of stuck.  Yes there are birds in their house, but they are also outside my house.  So really hard to get completely away.
Posted by: twinturbo
« on: January 30, 2014, 10:56:12 AM »

^co-sign the above as a gold standard. OP, I think, presents early on in this relationship with her doc at a somewhat anomalous position. I got the sense they're going to get there together and for now this first time meeting he doesn't want to mess with her mojo since he knows for a fact she will self-inject. On the other hand that's a buttload of inference on my part.
Posted by: LinksEtc
« on: January 30, 2014, 10:21:59 AM »

This is no secret  :) - I am a big fan of the written plan (a nice little rhyme there  :))

I agree with TT about not being a complete slave to a flowchart, and that there is a place for judgment, but I just see so much value in good written plans. 

A copy of dd's FA plan is with her epi's that I carry.  I am pretty comfortable with FA stuff at this point, but if she has a rxn, I want that objective plan there that I can look at (especially since if she were to have a significant reaction, I might not be thinking as clearly as usual). 

So many people talk themselves out of giving epi when it really should have been given ... with a written plan, it reminds people that some symptoms are "epi symptoms", it shows/reminds what the doc recommends based on objective guidelines, etc.

Plus, it can help with credibility issues (ex - with EMT) ... "I was just following the plan that my allergist gave me." 

FWIW ...
http://www.foodallergy.org/treating-an-allergic-reaction
Quote
Have your doctor create a written Food Allergy & Anaphylaxis Emergency Care Plan so that you and others will know what to do in the event of a reaction.



Not passing judgment ... written or not, the most important thing is that you understand the symptoms of anaphylaxis and know how to treat it.   :heart:

Posted by: twinturbo
« on: January 30, 2014, 09:40:39 AM »

I understand the message to be, from doctor to patient I can tell you the clinical but ultimately trust your judgment because her threshold to inject might be stronger (and more correct) on intuition for this initial miasma of unknown rather than be a complete slave to the flowchart.

They're going to get there together but he's only met her once, believes her and will help with the labs, interpretation and advice over time. OP is in a tough spot and I suspect doc knows it.

But that's my take on interpreting second hand reporting via a post. I could be way off.