Wednesday, November 11, 2009

The Nut-Free Mom Wants to Hear From You!

As we approach the end of the year (and the second year of this blog) I am curious to know what nut allergy questions are still floating around out there. I know I've addressed many of them, but certainly not all of them.! And new questions will always arise.

If you're new to nut allergies, what are your biggest concerns? And if you've been dealing with them for awhile, what are the areas that are most problematic for you?

Likewise, what solutions are working for you? Or do you just feel overwhelmed by the whole thing?

In order to serve you all better, please feel free to post or e-mail your questions or comments. I would love to feature some Q & A on my blog, so let 'er rip!

Thanks!

14 comments:

Anonymous said...

Hmmmm...I'll have to see what questions I can come up with! ;) Your blog has helped so much and is so practical! I really appreciate how you incorporate your experiences and make them "teachable moments" for us. You're just not telling us about your daughter's experiences but are instructing us/giving us helpful advice, tips, etc. with each experience and what you learned. There are so many blogs out there that are just about the PA kid and don't really offer anything else besides sharing the experience (ROFL--like mine, that's why I gave up on it ... I even got tired of reading it bcs it had no point to it...no value to the reader). Does this make any sense?

Anyway, it's been 6 mo. since the PA diagnosis. Our concerns seem like they change each month as our son gets older and is away from us more (church, playgroups, etc.). It's the moments he is away from us that worry me the most and hoping someone is watching out for him! And then, I'm not confident that those who watch him at church know what to look for if he does have an anaphylatic reaction and will miss the onset of a reaction!

Things aren't as overwhelming as they were 6 months ago, but we have our moments! The Christmas season seems more daunting than Halloween bcs just about every Christmas cookie (esp. prepackaged) is processed w/nuts. There are a lot more parties and treats, whereas, Halloween was one day, not drawn out for 1 1/2 months! I'm definitely concerned about all of our holiday family get-togethers esp. since not everyone "gets" DS's allergy and there will be hurt feelings by the time it's all said and done. I actually feel safer going out to eat than eating in our relatives' homes! So, that's been weighing on my mind!

The other issue is whether or not to cut down the oak trees in our yard due to the huge acorn problem! How do you tell a 2 1/2 yr old that he can't play in his yard bcs there are too many nuts?? (And, he likes to put them near his face/mouth and am worried he'll sneak one in when we aren't looking!)

Sorry for rambling ... I really do appreciate you sharing with us and am so glad I found your blog!

Anonymous said...

I am new to PA...recently found out that my daughter is allergic to peanuts (and possibly to tree nuts and shellfish too). Your blog has been a great resource...thank you.

I'm most overwhelmed about how to eat out at restaurants with my daughter. I have read different things where people suggest talking to the restaurant manager ahead of time about the allergy, carrying a food allergy card, etc. All of this seems so cumbersome to the whole eating-out experience...but, is this what everyone does? I would feel like I'm being such a pain-in-the-butt customer at a restaurant, but is this just what I need to do to protect my daughter?

I would love some insight into how you handle eating out. Thanks you so much.

Anonymous said...

P.S. Just left you a comment about my daughter with PA...and thought of one more thing.

I live in Chicago (East Lakeview/Lincoln Park area). Do you know any support groups nearby?

Lisita said...

Just recently found your blog and think it's great. Looking forward to reading more about your experience with food allergies.

Jenny said...

Thanks everybody for your input so far. I really appreciate the kind words, thoughts and questions!

To the reader who is looking for a support group in Chicago, here's a link with that info for you:

http://www.mochallergies.org/go.cfm?do=Page.Show&pid=11

You can also go to www.mocha.org for even more info on support groups in Illinois and Chicago.

Jenny said...

One more note to MaNut--please check out the following link re: acorns and nut allergies:

http://www.schoolhealthservicesny.com/uploads/Acorns%20Pinecones.pdf

According to this, acorns are not a hazard to nut-allergic children. We also have a huge oak tree in our backyard, and while it bothers my seasonal allergies when the buds come in, we have not had a problem with our daughter having contact with acorns. Acorns are not considered part of the nut allergen family according to the link I provided.

Of course, always check with your Dr. for more ifo.

Jenny said...

OK, just to be perfectly clear--contact with acorns is not problematic for nut allergic people but of course, kids shouldn't ingest them.

Anonymous said...

We very recently found out that our 18 month old daughter is peanut and nut allergic. I struggle with wanting to take her out into public to eat at all and yet I don't want her to miss out on anything that should be part of a normal life. I would love to know more on this topic.

Also another big question for us is that our Allergist has told us that when a reaction occurs we should wait until our daughter throws up the allergen before we give her an epi-pen. He says this allows the body to rid some of it and lessens the reaction. Are other parents told this? I would love to hear some experiences since we have actually never had to use our epi-pens at this point. I'm so nervous to think about waiting.

I love your blog. It really means a lot to find others out there who can fully relate.

jenny said...

Two years into dealing with peanut allergy, it does get easier in many aspects, and many "moments" like other readers point out still comes out from time to time. One of the comments I keep reading in the articles, blogs, and support group discussions...etc is people asking " ....my child has a "minor" peanut and tree nuts allergies......" I have always thought that there is nothing called "minor allergy when it comes to food allergies, because each reaction is different. But those people insist that their allergies are indeed....minor, causing only redness, hives, upset stomach...etc.
What is your take on this one?
As always, great job Jenny!

Jenny said...

Hi,

I really appreciate the questions and input. Let me respond to some of the latest comments.

Regarding dining out with food allergies, please search my blog with the key words "dining out" for some tips. I have posted quite a bit about this. Another great blog for dining out is www.allergicgirl.blogspot.com. This author is a food allergic adult and dining out expert.

Also, regarding waiting until someone vomits before using an Epi Pen--I really do not dispense medical advice but here's my understanding of anaphylaxis--you do not want to wait to treat this. By the time someone vomits, they could be in severe allergic reaction and an EpiPen will help reverse the reaction. If you wait, there's the chance the person will be too far advanced in their reaction for the Epi Pen to take effect. That's not what we want.

My doctors never told me to wait if I suspect accidental ingestion or allergic reaction. I would follow up with your doctor about this or get a second opinion. That advice really worries me because I've never heard that before and it sounds dicey.

Finally, I've heard the "minor" allergy thing and I think that's because a)people have varying reactions at different times and b)people are ashamed of nut allergies and try to downplay them. Another thing may be that people confuse food intolerance with food allergy. Intolerance is not not an allergy but it sounds similiar to those not familiar with it.

From my understanding, a nut allergy or peanut allergy always has the potential for a life-threatening reaction. People -- even severely allergic ones --may have a mild reaction one day and an emergency situation another day. You can never predict and so strict avoidance of certain foods is really the only way to go.

Thanks again for the comments and please--anyone with medical concerns or questions about when to use an Epi Pen should contact their doctor!!! It's a matter of life or death, so don't hesitate to ask your MDs these questions.

www.foodallergy.org (FAAN) also has some good info on Epi Pens.

Anonymous said...

The biggest concerns for us are:
1) when she is not in our care - we actually ahve never left her with a babysitter and anticipate never "going away for a weekend" etc... However, she does go to school.
2) Eating out - we never eat out, ever, since they cannot guarentee a safe experience. This gets difficult, though. As she gets older, she may want to try to eat out, fast food, ice cream, or even delivery pizza!
3) Not trusting food labels or manufacturers.
4)Afraid to fly and be that far away from medical treatment. Is it worth it?
Then the subsequent travel it would yield--hotels? restaurants?
5) Hesitation to try new foods like sushi, seafood, etc...
6) worry about the future

Cookie_poet said...

First of all, let me say that I appreciate your insights. Having a forum to discuss food allergies is immensely helpful. It has been 2 1/2 years since our family became aware of my son's peanut allergy. We have been vigiliant about reading food labels and conscious about monitoring what he eats when we're away from home. He is 4 years old now and started preschool. His teacher will call me or have me review ingredients if the class is going to have a cooking activity. I read the label and/or advise her to do the same. Is this enough? I find food labels to be confusing at times. Most of the time, the labels will list whether peanuts or any tree nuts are in the ingredients, but it's factory comments that are inconsistent. As far as I know, companies are not required to disclose traces of peanuts or tree nuts that may be found on the machinery or may come in contact with the food in question. If I have 2 products ( graham cracker crust, for example), one company may list the possible traces of nuts and the other company lists the ingredients only. I will buy the latter product that doesn't mention nuts because it seems safer, but is it really? Without calling the companies and asking about their manufacturing processes, should I consider both companies equal? I also have a question about playdates. I accompanied my son on a playdate (whether the host liked it or not) because I didn't want anyone feeding him anything without first checking the ingredients. A couple of times I have allowed him to go to a neighbor's house as long as his older brother (who's 7) is with him. I prefer to have him at home (nut-free) but I understand the thrill of going to someone else's house. How do other people handle playdates?

Jennifer said...

Hi,

I just found your blog - what a great resource - thank you! I'm a pretty well-seasoned mother of a peanut/tree nut allergic child. Highly sensitized, history of anaphylaxis and will react to peanut dust in the air. We're three years into the allergy, and her blood tests show increased sensitivity every 6 months.

My biggest concern is now she's able to go play at a friend's house. They live one block over, and I know the mother well (we've become friends), she's familiar with allergies, and the signs of an allergic reaction, and of course I leave an Epi-pen with her, but I still sit anxiously until it is time to go get Natalie. It worries me so much. I don't want to keep her in a bubble though.

I'd like to address Anonymous, with regards to flying... We've flown Southwest twice this year (first time Natalie's been on a plane since we discovered she will react to peanut dust). We will never fly another airline if SW services the destination we desire. They go above and beyond, in my opinion, without making you feel like some sort of freak. The best thing to do is, if you book online, turn right around and call SW to let them know that that particular flight will have a peanut allergy. They will update the flight record.

The day of your departure, check in at the ticket counter, NOT the kiosks. Again, remind them of the allergy. They'll call up to the gate. When you get to the gate, they will be expecting you at the counter - and will issue you a pre-board pass, so you can get on early (just behind handicapped people/in wheelchairs) and thoroughly wipe down your seating area, police the surrounding area for stray nuts. Remind the flight attendants that they have a nut allergy on board - sometimes the gate agent forgets to let them know. When I did that on our last flight, I felt like kind of a paranoid jerk, until the flight attendant profusely thanked me, since they hadn't been alerted prior - there was a last minute crew change. She also told me to always, always remind the FAs. It isn't regarded as being a pain in the rear.

They will not serve peanuts on the flight (they won't stop people who bring on nut products though) - and really - you get better snacks! Both flights (one was short, one was long), they brought out a box of four different snacks, everyone got to choose what they wanted, and they were at least twice the size of a measly bag of peanuts. I've only heard other passengers complain once - and really it was kind of ridiculous. They got a larger, better snack, that THEY got to choose, yet still needed to gripe about missing out on ten lousy peanuts? Anyway... I digress... Check out SW next time you need to fly somewhere. They rock the house for handling peanut allergies. Many of the airlines won't do anything at all. I also travel with a mask for my daughter just in case someone brings a peanut product on board.

Long-winded. Sorry!

Best - Jennifer

Molly said...

I just want to say thank you for addressing my question about vomiting before using the epi-pen. We are brand new to this entire thing so hearing from someone who has had experience helps me to make more informed choices of my own. This particular piece of advice has just been bugging me since our appointment. EVERYTHING that I have read has said otherwise. I realize your information isn't medical advice but I really appreciate the honest opinion. I will definetly ask her pediatrician more on this as soon as possible.

I'm sure you'll be hearing more from me as I continue to read along with your blog! Thanks.