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[K Johnson]

Hi All,

I'm not only new to this board, I'm completely overwhelmed with a new diagnosis for my son for cashews, pistachio and pecans.    We were at a car dealership almost 2 years ago and my son asked for a quarter.  Up to this point, we were not aware of ANY allergies at all.   We gave him a quarter and watched him as he got a handful of pistachios from the machine.  He only ate a couple of them.  He came to us and his face was red around his mouth and said it was itching.  I had benedryl in my car and gave him some.  Boom, he was fine. I didn't think much about it as he had never had any type of allery and this was at a car dealership and there's no telling what all was around there.  He eats peanut butter, macadamia nuts, loves boiled peanuts, so I never thought anymore about the possibility of an allergy.  I was so clueless - a nut is a nut, right?? NOT!!!!  Almost 2 years later, he's not had any problems - UNTIL, we were at a graduation party with family two weekends ago.  My son (12 years old now), was wanting a snack and I had a handful of mixed nuts.  I handed him 2 cashews and told him he could eat when everyone else at the party was eating (in approx 20 minutes).  He took the cashews and went on his way with other friends.  He came back to me in about 15 minutes.  He told me his "tongue hurt".  When I asked him if he could breathe and swallow - he responded yes.  All I had with me was benedryl pills.  My son cannot swallow pills due to gag reflux.  I took the pill and put it in my bottle of water and shook it to disolve it.  Unfortunately, it wouldn't disolve due to the water being cold.  I got him to drink the water even though the entire pill did not disolve. At this point, he was still talking to me and telling me that he could breathe and swallow without any problems.  I was getting our things to go to the drug store to get liquid benedryl.   As we stepped outside he began vomiting. He said he couldn't handle getting in the car due to being very nauseous.  I sent my husband (only a couple of blocks).  I sat down in the driveway with him and talked to him and we both amazingly remained calm.  My husband returned with the benedryl and after a small dosage, he threw up again. He took the 2nd dosage (which total came up to be a regular dose for his age/weight).  I was glad I split it in to 1/2 for in case he got sick.  He sat there for another 10-15 minutes and said he was feeling better.  He THEN told me how his throat wasn't tingling any more. Gee, I was floored when he told me this as he hadn't mentioned his throat was tingling.  He went upstairs and I put a wet cloth on his face and I watched him while he slept and I woke him up every little bit to ensure he wasn't feeling any other tingling or "tongue hurting".  When we returned home, I contacted his pediatrician.  We went in to see him and he immediately defined the difference in peanuts and tree nuts.  Since my ds has shown an allergy to pistachios and cashews, he told us to avoid those as well as pecans.  He gave us a epi-pen and said for us to ONLY use this for when he is having difficulty breathing. 

Okay, so where in the world do I begin?  I've trashed everything in our house that has any mention of tree nuts on the label.  I have bought him the benedryl fast acting tablets for him to keep with him at all times.  With us not having the difficulty breathing does anyone else suggest what we should do with the epi? Should I just keep it with me and he have one  at school and summer camp?  Or should he wear one at all times?  I'm trying to be proactive and not reactive - yet remain level headed at the same time. IS THAT POSSIBLE?   I'm still new to all this and the internet is a scary world to visit regarding tree nut allergies. I can use advice...yet, I don't need to feel like a negligent mom for not realizing he had this allergy until he is 12 years old.

Thanks,
momof1boy

[rebekahc]

First, welcome, I'm glad you found us!  So sorry your son had a reaction and REALLY glad he's okay.


How did your doctor dx the pecan allergy?  Pistachio and cashew are related (in the mango family), so him being allergic to both isn't surprising, but pecan is a completely unrelated tree nut.  Regardless of which nuts he's allergic to, yes, avoiding all tree nuts is best because of the high risk of cross contamination from other tree nuts.  I really think you should visit a pediatric allergist with lots of food allergy experience so you can get correct advice.  Breathing difficulty is most definitely NOT the only time to use Epi.  His reaction was anaphylaxis (at least grade 3 according to the anaphylaxis grading chart) and should have been treated with an EpiPen.  Here's a link to the Welcome Page which includes links to the anaphylaxis grading chart.  The standard rule of thumb for using Epi is any two body systems involved = use epi.  For many, known ingestion + any symptom = use epi.  A good allergist should be able to tell you what's best in your situation and give you an allergy action plan.

Any person at risk for anaphylaxis should always carry EpiPens with them.  So many fatalities occur because the allergic individual wasn't carrying Epi and/or wasn't told when to use Epi and/or thought their allergy wasn't severe.

The learning curve is steep, but you'll be fine.  Read here.  Ask any questions you have - we'll be happy to help.  Check out the manufacturers threads to see which companies are more trustworthy since allergy warning labels are strictly voluntary.  Read through the unexpected sources of peanuts/tree nuts thread in the Peanut/Tree nut section of this board to get an idea of what's unsafe.

Most importantly, take a deep breath and know that it gets easier.

[CMdeux]

Medic-alert identification that stays on ALL THE TIME is a GREAT idea.

Also be sure to check out carriers for epinephrine injectors-- with an adolescent boy, he may prefer the lower-profile of the Auvi-Q, which can easily slip into a pocket.

Because your son is 12, not 2, you have some catching up to do so that he is ready to manage his own allergy sooner:

Discuss intimate contact and how that carries risk for food allergic teens, role-play some peer pressure scenarios, explain that alcohol and some drugs can make an allergic reaction MUCH more severe-- not to mention that it can make it very very difficult to get anyone to believe that your impairment is due to allergy, not being wasted.  Discuss how to ask about ingredients at restaurants and friends' homes, evaluate how comfortable you are with him eating food prepared by friends/family, and role-play how to train other people to help you using an autoinjector (an Auvi-Q has an auditory walk-through of cues which is VERY helpful there).

The fact that you really didn't have any idea up until now is GREAT news-- because it means that he probably doesn't have a super-low threshold.  Why is that good?  Well, it's good because while he needs to be worried about anything going into HIS mouth, he's not going to need to also worry about everything going into everyone else's mouth around him.  That's a VERY hard way to live as an adolescent.

(Just figured I'd point out the bright side.)

Read every food label-- every time.  While it took a handful of nuts to trigger that reaction, you can't KNOW that it won't happen with a much smaller triggering dose at some point in the future, unfortunately.

Bakery goods, salads, salad dressings, middle Eastern, Asian, and Indian cuisine are very dangerous with this set of treenut allergies.  My DD13 is highly allergic to both pistachio and cashew, too. 

Other goofy things that you wouldn't THINK would be a problem... SOUPS.  The shelf-stable ones in the boxes?  Yeah-- there is a cashew-carrot-ginger variety.  Hmph.  You don't want to know how we know that.   On the other hand, as I said above, having a higher threshold for the allergen means that this kind of thing MIGHT never be a problem for him.  My DD's threshold means that she has very little tolerance for shared production lines.  Most people don't have to worry about that so much.

I strongly encourage you to NOT go calling manufacturers of foods you've been eating for years unless/until you think there is a reason to suspect a problem with them. 

     You'll get the hang of it!!  ANY questions you have, there is probably someone here who knows the answer, or has been in your shoes.  Some of us have been doing this for decades (wow, do I feel old...  LOL).

[GoingNuts]

Running off to work, so will have to post more later.  Just wanted to say a quick Welcome!, and to let you know that CM and Rebekahc have given you great advice.

More later.

[Macabre]

Welcome!!


I would underscore that breathing difficulties are not the only time to use the Epi.  As RebekahC mentioned, 2 body systems (so vomiting + tongue swelling or runny nose or diarhrrea or hives--any of those kinds of symptoms = Epi).  OR swelling of the throat by itself would indicate teh need for Epi.  And basically, your son had that or was on his way to having it. 

People die from not having the Epi soon enough or not at all.  You can reach a point of no return. So if you see two body systems, Epi. If you have just throat closing, Epi. 

Epis cannot be left in the car. They cannot tolerate extreme heat or cold. Actually the window of safe temps is pretty small.

I would also avoid all tree nuts.  Cross contamination is high.

Bakery foods are also a good thing to avoid with tree nuts--and anyone else's baked goods (like at school or church functions).

It will seem less overwhelming soon.  Hang in there!

[Pdetyens]

Hi , I am new to this forum and so happy to have found you all! I recently was diagnosed with a sulfite allergy and it is kicking my butt . I am currently taking antihistamines to ease the huge hives I get every night and wake up with every morning. Same thing happened over 20 years ago when I found out I was allergic to shellfish . I am doing my best to read all labels. Right now I don't eat anything out of a box and am sticking to veggies and beef and fish, etc. I miss my wine terribly. The no sulfites added wines are not good for me yet as my system is so sensitive right now. It's been almost 4 months. Avocado and corn give me immediate reactions. As hard as I try to stay away from sulfites I continue to have hives all over. My IGE blood level started at 750 and should be at 100-150. After 2 additional blood guests it is down to 400. I'm at such a loss....can anyone help a gal out? Also, found a medication I was on that was sulfa based and got a new one to find out two weeks later, thanks to this site, that the new one is also sulfa based. Getting a new one today and hoping for the best. Thank you all!!

[spacecanada]

Welcome, Paula!  You will find a lot of great resources here.  Please notify your pharmacy of your allergy, as they can (and should) screen your medications for potential allergens.  They can work with your doctor(s) to find medications or alternatives that will be safe for your allergies.  They are also great at finding ingredients of over the counter medications as well, as many of them are in their database.  I've had them look into a few things for me.  Best of luck on this new journey.  It will get easier once your body calms down and you learn more about your new allergy.

[slwaggles]

Hello, 
Im new to the site not new to allergies. im 32 and when i was about 7 i started getting the allergy Dx. it was the usual indoor/outdoor stuff and a simple Mushroom food wise. As I got older and started having pregnancies and other health issues it was finally discovered that i was also Allergic to Corn, Wheat, Soy, Codfish, Clams, along with the mushrooms. I have been trying to figure out since 2005/2006 what i can and cant eat and still i find things that shock me. To make matters more interesting I also have an Auto-immune disease that effects my thyroid so i also need to watch what i eat to keep that gland in check and the anti-bodies from attacking it. At this point Im beginning to just give up hope. I have stopped cooking which is not good for the rest of my family and kind of am in a blue phase. I look forward to any advise, help or support i can get to help me on this journey.

[CMdeux]

I completely understand going through periods where you become dejected and suffer from depression related to the allergies. 

It's very important to reach out and regain perspective when you find yourself in that kind of (dark) place, however-- have you tried telling your allergist about your feelings?  It might be time to consider talking to a mental health professional who can help you come up with some healthier ways of coping with your (very real!) life stressors.

Corn is a very hard allergy to live with.   

[Kimmie]

So glad there are so many support groups. Looking for local activists in loudoun county. Like play dates ect. Looking forward to all

[Macabre]

We have a few folks from Loudoun County here!

[dmw237]

Hi, I am new to this site.  I found this through a search I was doing on baked in milk challenges.  I was hoping for any suggestions or advice based on others experiences.  My 13 year old son has had a dairy allergy since birth.  Last year he outgrew casein and was introduced to cheeses cooked, uncooked, and yogurt.  He is doing great with all three of those.  Well today he had his annual allergist appointment and his allergist is now suggesting for him to do the baked in milk challenge.  The muffin recipe on the Mt. Sinai website is what I think I will make for him.  I am not sure if anyone with experience in this has any suggestions or advice.  My son also wants to try goldfish crackers.  Not too sure how many he should have on his first day.  Any insight in this would be wonderful!  I look forward to getting advice and giving to anyone I may be able to help:)

[twinturbo]

If he's already eating yogurt and cheese unbaked regularly without issue he's already passed an oral challenge. I'm not understanding the baked milk challenge in this case unless the allergist is suggesting that the enzymatic process alone on milk proteins in yogurt and cheese reduces the allergenicity of those proteins enough to induce tolerance?

Somebody pinch me if it's true.

[dmw237]

My son tested negative for casein which we were told he should be fine with cheeses and yogurts.  But he tested positive for whey (last year) and was told to NOT have milk or baked in milk at that point.  He did try ice cream last November and by day 3 he broke out in hives all over his torso.  Now she is saying to go ahead and try the baked in milk. 

[CMdeux]

I'd ask down in the dairy allergen section, for sure-- that way those with direct experience will be much more likely to respond.

Basically, how we have approached both dairy and egg is NOT to use preprepared products, but IMMV.  We've chosen to do highly controlled dosing over a period of many years in order to force a lower threshold that is highly stable.

It's not the kind of thing that you want to do without guidance from an allergist that knows your child and his/her history intimately, though.     For us, pushing to a higher dose came with anaphylaxis risk that was not worth the benefits-- at least with egg.  With milk, it took about 7 years to build up to something resembling normal tolerance (that is, my DD can drink milk or have a milkshake once a day if she's careful, and if her allergen load is otherwise low).

We began with baked milk from powdered milk-- which I could carefully weigh and calculate a dose from, based on the total recipe and whatever portion of that was a 'serving' for her.  If that makes sense, I mean.

I also used lower-protein options-- butter, heavy cream, eventually half-and-half diluted with chicken stock (which is still what I use to make mac and cheese).

Uncooked milk, though-- that was years in the making.  Sounds like you're well on your way to that, however, which is WAY exciting!