Allergy Moms - need your brains

[Spryte]

DS has multiple LFTAs.  He also has many, many environmental allergies that induce asthma, along with a few IgE mediated food allergies that have not caused anaphylaxis but do cause an increase in asthma/eczema, and the allergist has us avoid them because they could easily become anaphylactic.  He has OAS to most raw foods, too.  So we have a complex history.

 

He's had several reactions that were clearly airborne.  One was nuts - we think - in a store at Hershey Park.  Another when I made lentil soup - that was particularly frightening (lentils often cross react with peanuts).  That reaction was a near epipen event.

 

As a young child (toddler), he always had a tough time in our grocery store.  He would become glassy eyed and space out.  We figured out the nut and seed allergy issue, and stopped frequenting the areas with the bins of loose nuts.  That helped with that issue, and it didn't seem very pressing any way.

 

More recently he held the cart, then bit his nails (bad, I know) - and had a reaction in the store.  It was near the holidays, they might have been handing out samples with nut products, who knows? Another near epipen event, though getting out of the store and a hefty dose of benadryl (plus watching him like a hawk) solved it.

 

Another time we were near the cooking area (it's a Wegman's with lots of prepared foods on one side of the store).  We were arranging a catering order for a party, so we were spending some time talking to the managers.  That time required emergency inhalers, benadryl, and leaving the store. We sat on a bench outside with the epipens in hand for a half an hour.

 

Yesterday, we ran in to Wegman's again.  It's a big store, so we stayed away from the nuts.  He did not touch his face or mouth (learned his lesson on that one!), and we didn't go near the side with cooking foods. But within 15 minutes he was rubbing his eyes vigorously and clearly starting to react, though it didn't get to the extreme as the other times.  DH took him out of the store while I finished.

 

So... Now what?  Obviously there's a problem with this store.  We can make accommodations to a degree - when DH is in town, he will go in without the kids.  But that's the only place that carries some of DS's allergy-friendly foods so we really need to go in that store occasionally.  

 

Any ideas about what could be causing this?  

 

This type of stuff worries me.  We are trying to help him become more independent re: allergies.  He has to learn to exist in a world full of his allergens.  What can we do?  We make so many accommodations... We haven't been to see my mom in 4 years because the last time we saw her, he ended up in the hospital (she has a cat, and that's how we learned he's severely allergic to cats - I didn't even know one could have an anaphylactic reaction to cats!!)... How is he going to be an adult and shop for food, or have a girlfriend, or ... ???

 

I don't know if I'm asking for practical advice (which would be nice), emotional support or just to hear that someone else has been here.  We are really struggling!

 

Any words of wisdom?

[lexi]

We have the same issues. I cry over them frequently. My dd can't go in the grocery store. My hubby has taken over all the shopping and stocks us up before he leaves town.

It's terrifying and frustrating to live like this. We have many family members we cannot visit.

I constantly worry over everything we do. Sometimes I feel trapped in my own house.

I have no good answers as we are trying to navigate this as well. But huge hugs to you because I know exactly how you feel.

PM me if you want to chat.

Is there an allergy moms social group on here?

I don't know very many other people IRL with food allergic kids so it can be lonely and isolating.

[Spryte]

We have the same issues. I cry over them frequently. My dd can't go in the grocery store. My hubby has taken over all the shopping and stocks us up before he leaves town.

It's terrifying and frustrating to live like this. We have many family members we cannot visit.

I constantly worry over everything we do. Sometimes I feel trapped in my own house.

I have no good answers as we are trying to navigate this as well. But huge hugs to you because I know exactly how you feel.

PM me if you want to chat.

Is there an allergy moms social group on here?

I don't know very many other people IRL with food allergic kids so it can be lonely and isolating.

 

Yes, it is absolutely isolating and lonely.  :(

 

Just to hear that someone else is agonizing over this is helpful, thank you!

[Dana]

:grouphug:

 

My son has had a mild reaction at Whole Foods.

I think it was likely the grind your own area.

 

I'd probably try gloves and a mask the next time he has to go in.

 

I keep hoping the research will have some breakthroughs in the next decade or so to let the kids lead more normal lives.

 

:grouphug:

 

You could also talk with a manager via phone and see if they be willing to pull aside the food for you to pick up due to the allergies. Wouldn't hurt to ask....

[Lolly]

There with you. DD carries a bottle of liquid Benadryl at all times. She has been known to chug it. She is OAS to all fresh fruits and veggies. ALL. She has a handful of vegetables she can eat cooked. Only spices allowed are salt, pepper, and cinnamon. Meats and fish are okay. Shellfish are not. Nuts are a no. Except peanuts which were suggested she avoid anyway... She is severely allergic to smoke. Allergic to every indoor and outdoor they test for. All animals but dogs (low reaction on test/depends on the breed) and rodents (but is allergic to their bedding). She has passed out while walking across the mall parking lot because some fragrance triggered her while there. (Lovely man ran to me to let me know she was laying in the lot behind me. I hadn't noticed she fell...) She carries a respirator quality mask to use while in public if necessary (and it only does a small bit of good). She has to use it when entering/exiting because of all the people who smoke outside the doors and in the parking lots. Sometimes it isn't sufficient and the Benadryl comes out. Road construction burning near her college almost killed her a few times last year... They did give her a handicapped tag so she could park closer to the doors, but smoke was still in the buildings. 

 

Anyway, I have no suggestions. Just commiseration. At the moment, her asthma medications have caused a tremendous problem with yeast. She has thrush, a (probable) yeast caused dermatitis on her face, is having some sort of reaction to an injection she received for wrist tendonitis (it made it worse instead of better), and is having asthma problems because she is unable to take her inhaler. Her diet is further reduced to pure meat because of the yeast...And, the college is giving her grief and trouble over receiving temporary accommidations of a note taker since she cannot use her right hand at the moment, even with a doctor's note and care...Not a good month.

 

adding: She has managed to find a great group of friends who are supportive and tolerant to her needs. They make sure she has food when they have parties. They go to the few restaurants where she can eat something. One showers and puts on freshly washed clothes if he is going to be around her (smoker). 

Edited March 17, 2014 by Lolly

[Spryte]

Oy.  Well, at least misery loves company.  I'm grateful to know we're not alone in this.  Yesterday, after the latest grocery store reaction ... I felt completely alone.  :(

 

I'm hoping for more alternatives re: treatment soon, too, Dana.  Our kids need more than this.

 

Lolly, your kiddo sounds a lot like mine.  It's easier to list the foods he *can* eat than the foods he can't.  The only environmentals he didn't test positive for were mold and dust, oddly.  Everything else was overwhelmingly positive.  There's always something. And the airborne food stuff is just so darn hard to pinpoint.

 

I think I'll check into masks and gloves.

[Lolly]

Oy.  Well, at least misery loves company.  I'm grateful to know we're not alone in this.  Yesterday, after the latest grocery store reaction ... I felt completely alone.   :(

 

I'm hoping for more alternatives re: treatment soon, too, Dana.  Our kids need more than this.

 

Lolly, your kiddo sounds a lot like mine.  It's easier to list the foods he *can* eat than the foods he can't.  The only environmentals he didn't test positive for were mold and dust, oddly.  Everything else was overwhelmingly positive.  There's always something. And the airborne food stuff is just so darn hard to pinpoint.

 

I think I'll check into masks and gloves.

 

Look at Lowe's home improvement for masks. The ones at drug stores are not as good.

[Spryte]

Look at Lowe's home improvement for masks. The ones at drug stores are not as good.

 

Thank you.

 

I just reread your post and realized your daughter is in college.  How is that going?  Is she able to eat?  I worry about college, and how that will go with regard to eating.  There is just so much we have to think about!

 

Her friends sound fabulous, by the way.  :)  It gives me hope.  DS is 10, but honestly, how do we ever get to the point of things like dating?  He and I have talked about it, and he's got a good understanding of his allergens (one is often an ingredient in lipstick) ... he's not worried about kissing anyone except for avoiding Great Aunt Sally's kisses (that give him hives) at the moment, but seriously??  Can you imagine a teenage boy saying, "Hold on, let me read the ingredients of your lip gloss before our first kiss!"??  

[Mrs Mungo]

You might look at masks with carbon filters, they are better at filtering allergens.

 

I would *definitely* talk to your doctor about the social factor. They might be able to refer you to a child life specialist or pediatric psychiatrist (one who deals with kids with medical issues specifically). They often have a lot of knowledge about support groups, camps, etc for kids with medical issues.

[Lolly]

Thank you.

 

I just reread your post and realized your daughter is in college.  How is that going?  Is she able to eat?  I worry about college, and how that will go with regard to eating.  There is just so much we have to think about!

 

Her friends sound fabulous, by the way.   :)  It gives me hope.  DS is 10, but honestly, how do we ever get to the point of things like dating?  He and I have talked about it, and he's got a good understanding of his allergens (one is often an ingredient in lipstick) ... he's not worried about kissing anyone except for avoiding Great Aunt Sally's kisses (that give him hives) at the moment, but seriously??  Can you imagine a teenage boy saying, "Hold on, let me read the ingredients of your lip gloss before our first kiss!"??  

 

She has to be in an apartment. She cooks almost all her own food. She can grab Subway on campus, but they are so slow she doesn't have time (the campus location). Dd is allergic to latex, so we got to have a discussion about latex products...just in case when she was a teen. You don't want a reaction there!!! Dd has to have awkward conversations with potential new friends. Things like I cannot be around you if you wear any perfumes, your deodorant is too strong a smell, you have been around your mother and now I cannot be near you because you have smoke hanging on your clothes. She has gotten used to having to move a lot when she sits down in a theater or classroom. Oh, and she is allergic to mint...like if people are sucking a tictac or, Lord forbid, chewing gum!!! Yep, airborne. We have had to exit many an elevator in a hurry! She has just learned to deal with it. It is scary, but everytime she leaves the house (or doesn't), she is facing potential death. She had rather take that chance than stay isolated forever.

 

Dating: she has only really dated one person. That lasted a few months. I think it was all too much allergy stuff to handle. It is almost too much for ME, I can't imagine anyone else being able to live with it. 

[Ameena]

*hugs*

 

I ditto the gloves & mask. And we've used Wet Ones {brand name only seems to work best to break down allergy proteins} to fully wipe down carts / baskets before dd touches it. And ditto on the benedryl - I am a chugger too for my airborne peanut allergy.

 

I'm not sure the age of your son, but dd's severe reactions seemed to peak about age 3, then have slowly gotten lesser. At her worst, she stayed home with grandma while I shopped as she was severly allergic to some grain products in addition to several fruits & veggies. Now that she is older {7}, and it has calmed down, she knows enough to not touch things & to ask ME before eating any samples. We are still dealing with a mystery allergy that is causing her to itch all the time, so folks look at us oddly because she is ALWAYS scratching.

 

Would it be possible to pay a neighborhood kid or fellow homeschool mom to pick up your groceries when your DH is out of town? Or to watch DS in the car/ truck/van while you ran in quickly with the rest of your kids? Barring one of those - I'd just stockpile at home.

 

I would also check out the kidswithfoodallergies forum - they can probably help more than I can. Especially on the growing up with LTFA bit.

[Dana]

Anyway, I have no suggestions. Just commiseration. At the moment, her asthma medications have caused a tremendous problem with yeast. She has thrush, a (probable) yeast caused dermatitis on her face, is having some sort of reaction to an injection she received for wrist tendonitis (it made it worse instead of better), and is having asthma problems because she is unable to take her inhaler. Her diet is further reduced to pure meat because of the yeast...And, the college is giving her grief and trouble over receiving temporary accommidations of a note taker since she cannot use her right hand at the moment, even with a doctor's note and care...Not a good month.

 

I expect her allergist has already discussed this, but just in case.... dh had issues with recurrent thrush with his asthma meds. When he switched inhalers and long term steroid, that seemed to make the thrush recur less. One medication seems to cause thrush for him. He thinks it was Advair.

 

Rinsing out the mouth immediately after inhaling can help (although it didn't for dh - he had to switch meds).

We also learned to read medicine labels closely. Ds takes Flovent and the aerosol is fine but the disc form contains milk powder. Very very glad we read the label before having him take that!

[Lolly]

I expect her allergist has already discussed this, but just in case.... dh had issues with recurrent thrush with his asthma meds. When he switched inhalers and long term steroid, that seemed to make the thrush recur less. One medication seems to cause thrush for him. He thinks it was Advair.

 

Rinsing out the mouth immediately after inhaling can help (although it didn't for dh - he had to switch meds).

We also learned to read medicine labels closely. Ds takes Flovent and the aerosol is fine but the disc form contains milk powder. Very very glad we read the label before having him take that!

 

 

She has just, last week in fact, had her inhaler changed to help. I think Flovent is the one she was put on in its place. She has been rinsing, she started getting thrush after about a month of having asthma diagnosed. It has been a recurrent problem. She hates the mouthwash! But, she read the insert for the Flovent and it is also known to increase yeast growth, so... Milk is one of those things she isn't allergic to; just intolerant. Right now, she seems to have yeast system wide. Stomach upset, gassy, facial rash, tongue. I even wonder if her tendonitis might be related. It all hit at the same time. Of course, doctors only acknowledge the thrush as yeast. The facial rash yeast is most likely known cause.