Parents of children with food allergies....

[Desert Rat]

I could really use some advise.

 

Here's the back story: Ds8 was diagnosed 19 months ago with tree nut allergies. We've had it under control since then with only 3 "mistakes" only one of which was in the last 15 months. We are very lucky in that his throat doesn't close but he gets hives and vomiting. We are able to treat it quickly with Benedryl and haven't had to use his epipen.

 

Here's the problem: He's feeling helpless and deprived and he's not trusting us to keep him safe. I always make sure he has some safe alternative during outings. As with his asthma, I try to keep him in control of managing his medical condition. With his asthma, I let him choose when he needs a breathing treatment (to a point and when possible). He picks the activity he does during the treatment and which chair he sits in, etc.

 

I'm having a hard time doing that with the food allergy though. It's a lot trickier. His last reaction was completely my fault. It was on Valentine's Day and I gave him a box of Sweethearts without reading the label. Guess what? Since, then he has been much more fearful and less trusting. It breaks my heart.

 

He spent the night with his grandparents last night and refused anything from McDonald's as a treat even after my mom told him it was safe. Same with breakfast this morning. I picked him up and he was all teary eyed and upset because he felt deprived and fearful.

 

All of you parents who have been dealing with this much longer them myself, do you have any strategies that have worked for you? Anything I should be doing for my little guy that I'm not? Ways I can build that trust again (I feel just terrible!)?

 

I've requested a few books on tree nut allergies from the library, plus Arthur's DVD on peanut allergies. I've also showed him the FAAN kids website be he's not showing much interest it that just yet.

 

I've decided to let him read every single label first and then I'll double check to try to give him some control. But seeing as this is probably a lifelong allergy, I want to put him in the driver's seat and give him control and confidence now. Plus, I hate to see him sad.

 

Thanks for your advise and help! I have to go to work in an hour, so I'll be checking back tonight for any responses.

[Purple Cat]

I'm so sorry that you are going through this. I have a five year-old daughter with multiple life-threatening food allergies and asthma, which we have dealt with since 12 months old. I'm first going to address the fearfulness and deprivation first, and then if you don't mind, may I ask you to consider and check with your allergist on a few things. I have found the boards at hyperboard peanut allergies invaluable in dealing with social and school and medical management issues.

 

First, the fearfulness. We consulted a medical psychologist who works especially with children at this major teaching hospital's allergy and asthma department about my daughter's anxiety following a food allergy issue. My daughter, too, struggled with fearfulness and trust because her very beloved preschool teachers, some of whom she had stayed with in their home, violated all our instructions, school policies, etc., and offered my daughter food that contained her allergens. She developed intense separation anxiety, a different manifestation of the fearfulness and mistrust than your son, but the underlying feeling seem very similar -- I'm afraid? How can I trust when people I should be able to rely on make mistakes and I'm so dependent on them?

 

The medical psychologist emphasized that we HAVE A PLAN and THIS IS OUR PLAN and WE ARE FOLLOWING AND/OR FOLLOWED OUR PLAN. I would sit down and type up your new plan to ensure such accidents aren't repeated. For instance, (1) I will read every label before giving it to my son, (2) we only will eat teh following items at McDonald's and if they offer new menu items, we will check the website and contact them before eating it. You may already have done so, but personally I would apologize to my son and tell him I made a mistake and can understand how he would then feel mistrustful, but at the same time, that this is your NEW PLAN both to keep him safe and to help him regain trust in you. (Think of if a friend violated your trust -- what would help you regain trust? An acknowledgment? An assurance of steps to ensure the violation isn't repeated?)

 

As for the deprivation, my daughter struggles with this, too. I usually acknowledge that it really sucks and I wish she didn't have food allergies and I'm sorry that she does. But then I also do downward comparisons. I tell her if she was a little girl with diabetes she probably couldn't eat any candy at Halloween, not simply have to trade out with her mom for safe candy her mom gives her. I tell her many people have something and some little kids lose their hair with chemo, etc. I also try to ensure she gets her just dessert later. For instance, church passed out suckers that I knew she couldn't have. She wanted one. I told her that I would really hate for her to eat it because if it made her sick, I might have to give her the epi pen, go to the ER, etc. BUT right after church, we would go across the street to the store and get candy we knew she would like and could eat without getting sick.

 

May I please encourage you to double check with your allergist about management of some of his reactions? What you described -- vomiting and hives -- involves TWO body systems (GI and skin). THAT is an anaphylactic reaction, and I know for our allergist and for many other moms of kids with food allergies, THAT reaction requires an epi pen. I'm glad benadryl worked this time, but are you aware that two factors predict a child's allergic reaction will be fatal: (1) asthma, even if mild and well-controlled and (2) prior anaphylactic reactions, which your son has had with the hives and GI. Epi pens are more effective if given immediately, and unfortunately, the delay in giving them (by waiting to see if benadryl works) or failing to give them at all (because benadryl is given instead) could make them much less effective in reversing an anaphylactic reaction once belatedly given. Also, reactions can be biphasic -- one reaction that resolves followed somewhere in the next two hours -- by a second reaction that is much more severe and much less likely to respond to an epi pen. (For citation, I'm afraid to lose a post I worked very hard on by trying to google the citation, but will post it later if interested. It's from a medical journal on the clinic management of severe food allergies in schools by Scherer (?) and some of hte top pediatric allergists. I used it to get my daughter's former school district to make changes, such as to train people besides the nurse to give epi pens and to refrain from keeping the epi pens locked up.)

 

I know for myself managing my daughter's food allergies has been a steep learning curve, and I've made my share of mistakes along the way. I haven't met a mom of a child with severe food allergies yet who hasn't made a mistake, and the reason is, because managing severe food allergies is difficult and takes a lot of experience and a lot of education.

 

I really hope this helps, and I hope my explanation and encouragement to clarify with your allergist doesn't offend. I've been a huge beneficiary of other moms experience in managing their children with food allergies and wanted to share my information, wanting the same thing you do, to ensure your son lives a healthy, long life.

[NoPlaceLikeHome]

Is this your 8 year old son or 11 year old? I would not have them in charge of medically managing their reactions IMHO. They need an action plan from the allergist. Hives and vomiting requires the epi-pen per our allergist. Astham does place your ds at greater risk:( Now I do recommend training him to always carry a dual pack epi-pen and benadryl melt-a-way film strips, as ordered by your doctor of course, in a pack when he goes out. He should have a designated safe place when at home that is nearby. He should be trained to always, always, always check ingredients on every single thing (as well as yourself). He should not eat food homemade by others.

 

I would also consider avoiding peanuts IMO since they are often cross contaminated I believe but ask you doctor.

 

This web site is helpful:

http://www.foodallergy.org/

:grouphug:

[CAMom]

Not to hijack but can anyone even find the benadryl meltaway strips anywhere? I can't.

 

Would the prefilled spoons be a good alternative?

 

:grouphug: Kalah.

[Dana]

Not to hijack but can anyone even find the benadryl meltaway strips anywhere? I can't.

 

Would the prefilled spoons be a good alternative?

 

:grouphug: Kalah.

 

I can't even find the prefilled spoons anymore. Sounds like there was another contamination issue. I checked with the CVS pharmacist and was told that they've got less space and don't carry as much benadryl since allegra went OTC.

 

I have been able to find the generic chewable bendaryls though... but just the occasional single box. :glare:

[NoPlaceLikeHome]

Not to hijack but can anyone even find the benadryl meltaway strips anywhere? I can't.

 

Would the prefilled spoons be a good alternative?

 

:grouphug: Kalah.

 

Your pharmacy should be able to order. I have found them at CVS and CVS has said they would special order if necessary. Walmart never has them. A year or so ago there was a shortage but it did not last long.

 

I think the film strips are much safer in the case of any respiratory distress which can happen in anaphylaxis. Ask your doctor. Mine agreed.

[dangermom]

I know for myself managing my daughter's food allergies has been a steep learning curve, and I've made my share of mistakes along the way. I haven't met a mom of a child with severe food allergies yet who hasn't made a mistake, and the reason is, because managing severe food allergies is difficult and takes a lot of experience and a lot of education.

 

 

This is so true. I had to learn the right level of paranoia the hard way. My daughter was very small, though, so she has had a long time to get used to it and she doesn't remember my mistakes. :grouphug:

 

For deprivation, he'll get used to it--but one thing I try to do is make sure that my daughter has a treat that is just hers, and usually BETTER than what she can't have. I keep a supply of her treats in the freezer and let her have one when she has to miss out. (I make them myself--they're just pure Guittard's chocolate mixed with Rice Krispies to make the best crispy chocolate ever. I cut them into nice squares and put them in individual baggies.)

 

Another thing that helps with the injustice is making sure to point out when others have allergies. It's easier to feel like you have company when you know that Mrs. X is allergic to chocolate (horrors), little F. is allergic to everything you're not allergic to (that was an interesting birthday party), and B's big sister can't have milk or wheat.

[Dana]

Also, reactions can be biphasic -- one reaction that resolves followed somewhere in the next two hours -- by a second reaction that is much more severe and much less likely to respond to an epi pen. (For citation, I'm afraid to lose a post I worked very hard on by trying to google the citation, but will post it later if interested. It's from a medical journal on the clinic management of severe food allergies in schools by Scherer (?) and some of hte top pediatric allergists. I used it to get my daughter's former school district to make changes, such as to train people besides the nurse to give epi pens and to refrain from keeping the epi pens locked up.)

 

 

I'm interested in the source...

 

My son has had a dairy allergy since he was 3 months old. After a reaction at 1 year, we started carrying Epi-pens. We got lax for a time when he was about 4 years old. :glare: We were lucky.

He had an anaphylactic reaction to cashews at 5 years old. We were home and had the Epis in his kit. He had none of the symptoms we were used to seeing; just him telling us his throat was scratchy and he thought he was having an allergic reaction. We didn't see any skin reaction. Gave Benadryl & Orapred and headed to the ER just in case. He started vomiting in the car and that's when I gave the Epi. He had a biphasic reaction; no hives until about 4 hours after the initial ingestion. Needed a second dose of epinephrine in the hospital (after the first when we arrived - and after the IV Benadryl).

The hospital sent up food with dairy in it for breakfast. :glare:

I'm still ticked about that one.

 

To the OP,

First, :grouphug:

Second, you may want to ask your son what would make him feel safe.

I agree that with the vomiting, you've got more severe reactions that probably would have been better to give the Epi. With my son's reaction, we were told a couple of times that we should have called an ambulance and gone to a closer hospital. However, we were only going on our son's comments. We saw no signs of a reaction.

 

When we see the allergist, we ask our questions and then let our son ask any questions he has. He wears a medic-alert bracelet and we always check that the medicine pack is with him when we go out.

 

I think that we may overreact to some things, but I feel that I watched my son come close to death. If we hadn't had the Epi and listened to him absent any signs of allergic reaction, I don't know what would have happened. I don't trust him with many people and my husband or I is always with him with the medications when we're out.

Because they change ingredients, we read labels EVERY TIME we open a new package. If something was produced on shared equipment, we don't use it. We also don't eat out.

[NoPlaceLikeHome]

:ack2: The strips may have been discontinued which irks me as a nurse since I truly believe they were the safest and quickest acting benadryl available besides IV:(

 

I will have to investigate this:(

[NoPlaceLikeHome]

It's from a medical journal on the clinic management of severe food allergies in schools by Scherer (?) and some of hte top pediatric allergists. I used it to get my daughter's former school district to make changes, such as to train people besides the nurse to give epi pens and to refrain from keeping the epi pens locked up.)

 

 

 

:iagree: I get angry every time I hear of a school that keeps epi-pens and inhalers locked up in an office instead of in the same room or location where the student is at all times. I also think once a student is old enough, then they should carry the medicine on their person at all times.

 

Locked up meds are dangerous since every minute counts in anaphylaxis. Also, all teachers/aides need to instructed as well as how to administer.

 

I did convince the schools where ds attended to have his epi-pen/benadryl with him or with a teacher in the same location at all times.

[rafiki]

.

[Purple Cat]

Here is the citation for the info I stated. It's in a respected medical journal. http://www.jacionline.org/article/S0091-6749(09)00560-0/abstract

[Dana]

Here is the citation for the info I stated. It's in a respected medical journal. http://www.jacionline.org/article/S0091-6749(09)00560-0/abstract

 

Thank you!

[littlebug42]

FYI- Triaminic still has an allergy medicine available in the thin strips. I just purchased some the other day. They are also diphenhydramine, the same as Benadryl.

 

http://www.amazon.com/Triaminic-Allergy-Strips-Flavored-14-Count/dp/B002DW9ZRW

[NoPlaceLikeHome]

FYI- Triaminic still has an allergy medicine available in the thin strips. I just purchased some the other day. They are also diphenhydramine, the same as Benadryl.

 

http://www.amazon.com/Triaminic-Allergy-Strips-Flavored-14-Count/dp/B002DW9ZRW

 

Thank you:001_smile: I am not too happy with the makers of Benadryl at all since this is a safety issue IMHO. I will be calling them to voice my opinion:glare:

[prairiewindmomma]

My ds(9) either wears shorts with deep pockets or carries a man bag. Now that he doesn't need a chamber mask for his inhaler, it's a lot easier to get out and about without a lot of baggage.

 

Is your ds a young 8? I think there has been a huge difference in this past year with how much I've been able to allow my oldest (a young 9) to handle. Sometimes kids pick up on *our* attitude about the situation. I'm not saying that the OP is overly anxious, but my goal is to be vigilant and yet somewhat silent/invisible at this point. I step in when I'm needed, but I also try to allow him to manage more of his own life....to see if he's developing the skills that he needs in handling conversations, handling meals, etc.

 

There are times when my 9 yob is without me--boy scout activities, etc. There is always an adult near him who is capable and aware, but my ds does need to know that I trust him AND that he has help available when he needs it.

 

HTH!

[Desert Rat]

Thank you for all your responses! I just got back from work and here are a few clarifications:

 

This is for my ds8 whose birthday is in February, so he is a young 8 right now.

 

Medically, I have the okay from his allergist to try the benedryl first. His tongue is tingly and he is VERY GOOD at telling me straight away. His allergist feels that it is safe to administer benedryl first. Thanks for all of the concern though-I have to drag information out of his doctors sometimes and it helps to know you all "have my back"! The reaction ds8 had in February was just a tingling tongue. Benedryl was administered within 1 minute and he showed no other systems and was with me for the following 4 hours and I watched him like a hawk.

 

Specifically, I am looking for advise on how to help him cope with his fear and become proactive in managing his allergy. I've seen what a difference this approach has made with his asthma. Although I realize I can't treat his allergy the same way, I'd like to see a similar result. My dh has recommend making him a list of safe foods so he can see all the foods he CAN have versus all the ones he can't. I like the idea but sometimes those foods change so I'm hesitant to try it.

 

I liked the advise to talk about how other people have it worse. We sometimes do this specifically in regards to candy-I tell him treenut allergy is at least better than peanuts (sorry all you peanut people!).

 

Thanks again for all the advise! I'm grateful to have this forum as I don't know anyone IRL dealing with this issue.

[NoPlaceLikeHome]

Thank you for all your responses! I just got back from work and here are a few clarifications:

 

This is for my ds8 whose birthday is in February, so he is a young 8 right now.

 

Medically, I have the okay from his allergist to try the benedryl first. His tongue is tingly and he is VERY GOOD at telling me straight away. His allergist feels that it is safe to administer benedryl first. Thanks for all of the concern though-I have to drag information out of his doctors sometimes and it helps to know you all "have my back"! The reaction ds8 had in February was just a tingling tongue. Benedryl was administered within 1 minute and he showed no other systems and was with me for the following 4 hours and I watched him like a hawk.

 

Specifically, I am looking for advise on how to help him cope with his fear and become proactive in managing his allergy. I've seen what a difference this approach has made with his asthma. Although I realize I can't treat his allergy the same way, I'd like to see a similar result. My dh has recommend making him a list of safe foods so he can see all the foods he CAN have versus all the ones he can't. I like the idea but sometimes those foods change so I'm hesitant to try it.

 

I liked the advise to talk about how other people have it worse. We sometimes do this specifically in regards to candy-I tell him treenut allergy is at least better than peanuts (sorry all you peanut people!).

 

Thanks again for all the advise! I'm grateful to have this forum as I don't know anyone IRL dealing with this issue.

 

I try to reassure son by telling him he is relatively healthy and that all we have to do is follow our rules:

1. Check every single food/ingredient for allergens or the made in a facility statements.

2. Do not eat others homemade food.

3. Do not eat bakery goods in general.

4. Always carry his dual pack epi-pens and benadryl on his person or have it in a safe designated spot when he is home that is nearby.

5. No eating out at chinese, asian, thai restaurants.

6. Rarely eat out.

7. Know the signs and symptoms of anaphylaxis and how to give epi/benedryl. I have not taught ds how to give epi pen yet since he is only 9. I plan on doing so in the next couple of years.

 

I also always assume there will be no safe food at activities for ds so we always bring a safe snack with us. For birthdays, we bring him a cupcake to eat.

 

When we go to the grocery store I make an effort to teach him about checking ingredients and to show him what peanuts, tree nuts and his other allergens look like and their names.

 

I try to keep it light and say how lucky we are since he is pretty healthy. Sometimes he feels left out at school since he eats safe snacks while others have birthday cupcakes, etc. I tell him not to worry since he can always have a treat at home:) I also hope to teach him how to cook a lot in the future so he can stay safe and impress the girls which is what I tell him;) I emphasize that it is easy to keep him safe as long as we follow the rules.

[Omma]

I'm not sure I would tell him about how a peanut allergy would be worse, because it so happens that our ds had a RAST test that showed no peanuts (only tree nuts) for his first test. Then about 2 years later he had a skin test that showed he was also allergic to peanuts. We had our hardest time with him after that, because he had a vomiting reaction to an Asian pear (of all things) and then was very fearful, angry, and sad after that and didn't want to even eat food at all... period. It was very frightening. I thank the Lord that we are over that hump (he is now 11 and it happened when he was 9). I think this is just a very hard stage for dc as they are just old enough to know the dangers, but they are still young and inexperienced as to how to navigate through life with these potentially life-threatening food allergies.

 

My ds has also learned to basically just say, "No, thanks", to any food offered him outside of home, unless he can visually check out the list of ingredients for any offending items. It is just plain awful when foods like grated cheese at WalMart (their 'great value' brand) states that it could have traces of almonds in the cheese, of all things.

 

 

:grouphug:,

 

Brenda

 

Brenda

[abbeyej]

Not to hijack but can anyone even find the benadryl meltaway strips anywhere? I can't.

 

Would the prefilled spoons be a good alternative?

 

:grouphug: Kalah.

 

It's tough, but I can still find the Triaminic ones some places:

http://triaminic.com/products/thin-strips/cough-and-runny-nose.shtml

[abbeyej]

I think teaching *him* to read the labels will be *very* helpful. My ds was younger when he was first dealing with this, but luckily he was already reading well, so even at 4 years old, he would ask to read the labels on nearly everything.

 

I guess the other thing I would do is just be very, very open with your ds. "Honey, I'm terribly sorry. I've been learning about this too, and I've made a couple of huge mistakes and I feel just awful for those. But I've also learned from those mistakes and I want you to know that I take my job as your mother very, very seriously and I will do everything I can to keep you safe. I'm asking you to please forgive me for those mistakes and to trust that I've become better at doing this job." etc...

 

Also... And this may sound harsh, but is he really feeling "deprived" over just having to avoid nuts?!? I might get a little tough on him over that. Again, we're coming from a slightly different place. When ds was 4, he couldn't eat almost anything. Over the years we've got one thing back here, another there, to the point that the only things he can't have now are tree nuts and peanuts. This seems so *easy* to us. He can eat *almost* everything. It's awesome! ... But I can see how not having everything taken away first makes nuts/peanuts seem like a big thing. But really, I think I'd be tempted to tell him to get a grip. "Yep! It's unfortunate and it seems a little unfair. Guess what, kid? Life isn't fair, and there are a lot of kids with far, far bigger problems. We're going to do our very best to keep you safe and to come up with yummy alternatives, but the self-pitying has got to stop."

 

Now, granted, my approach would vary a bit from kid to kid. ... But I do think sometimes it's easy for us to feel *so* badly for our kids that we coddle them a bit more than is helpful. You're there and will know better than I when it's appropriate to give him a hug and say, "Yep, it's miserable" and when it's time to say, "This is overkill. You've got lots of good things in your life and you need to buck up."...

 

Give him more responsibility. He can handle it now. Be open with him about your sorrow over past mistakes and your plan for avoiding those in the future. Tell him that sometimes self-pity only makes one more miserable.

 

Last thing... Even life-threatening tree nut and peanut allergies are not *necessarily* life-long. We were just talking to a pediatric allergist at the local children's hospital about this the other day. Yes, they *used* to assume these were life-long, and as a parent, I think it's helpful to plan that they probably will be, but more and more they're finding that kids *can* outgrow these types of allergies. It *might* not be forever.

[Twilight Woods]

I must be lucky b/c DD doesn't feel deprived or left out. She asks first [habit training from the beginning] what the food has in it before eating it and we have only had 2 incidents due to her just grabbing and eating [butterfinger bar] and SIL stupidity [made her a PBJ sandwich after I specifically requested jelly only].

 

I have to be thankful though b/c her numbers keep dropping. We just had her RAST/skin test done and her sesame came back negative so we will be doing a food challenge at the end of June. Her egg, tree nuts, peanuts and Shellfish have gone down again so we are hopeful she is growing out of them.

 

I have done ALOT of training with her though on this issue about the severity of it and what will happen if she eats something. SO I think that is why she is ok with it all.

[NoPlaceLikeHome]

It's tough, but I can still find the Triaminic ones some places:

http://triaminic.com/products/thin-strips/cough-and-runny-nose.shtml

 

The one you posted above has more than one ingredient I believe. This one is just diphenhydramine (benadryl):

 

http://www.amazon.com/Triaminic-Allergy-Strips-Flavored-14-Count/dp/B002DW9ZRW

 

I ti would be better to use just plain benadryl but ask your doctor:)

[NoPlaceLikeHome]

I must be lucky b/c DD doesn't feel deprived or left out. She asks first [habit training from the beginning] what the food has in it before eating it and we have only had 2 incidents due to her just grabbing and eating [butterfinger bar] and SIL stupidity [made her a PBJ sandwich after I specifically requested jelly only].

 

I have to be thankful though b/c her numbers keep dropping. We just had her RAST/skin test done and her sesame came back negative so we will be doing a food challenge at the end of June. Her egg, tree nuts, peanuts and Shellfish have gone down again so we are hopeful she is growing out of them.

 

I have done ALOT of training with her though on this issue about the severity of it and what will happen if she eats something. SO I think that is why she is ok with it all.

 

Just an FYI, I never realized that jelly jars are often contaminated with peanut butter since often people use the same knife in both jars. We never do jelly at others houses unless it is a brand new jar and I am there to prevent cross contamination.

[Twilight Woods]

Just an FYI, I never realized that jelly jars are often contaminated with peanut butter since often people use the same knife in both jars. We never do jelly at others houses unless it is a brand new jar and I am there to prevent cross contamination.

 

 

yes! at home we use the squeeze jelly. In addition we do not have PB in our house so it's a non issue.

 

When we are at others house and I know we are staying for lunch I will either bring her own lunch or make sure PBJ is NOT on the menu.

[Desert Rat]

Just what I needed, girls! I think we were both feeling a little overwhelmed this weekend and I know he stayed up late last night at his grandparents'. He is overly tired and was a bit weepy.

I try not to coddle him. I think, unlike many of the kids here who developed their allergies earlier, he's having a hard time because he suddenly had a reaction at 6, almost 7. It was weird and out of the blue. It's still relatively new to us and we're still learning. I do not promote self pity and do encourage him to be positive. I will keep the peanut allergy thing in mind. That would be terrible to say "at least" and then he's allergic to that "at least" item!

I had a really good talk with him his evening and got to some root issues- a major one is that he thinks my parents don't take the label reading/allergies seriously. I know they do take it seriously but he's not seeing that. I'm sitting them down tomorrow and discussing it with them (they are his caregivers 4 afternoons a week). This will go a long way.

I also apologized again and asked him if he honestly had hard time trusting me and he said, "No, everyone makes mistakes." I believe him and feel better.

We started having him read the labels this afternoon with items are know are safe so he can build some confidence.

Thanks again for all of the guidance you have given me. I'm very grateful.

[rafiki]

.

[abbeyej]

The one you posted above has more than one ingredient I believe. This one is just diphenhydramine (benadryl):

 

http://www.amazon.com/Triaminic-Allergy-Strips-Flavored-14-Count/dp/B002DW9ZRW

 

I ti would be better to use just plain benadryl but ask your doctor:)

 

The one I listed is JUST diphenhydramine. It is *not* the "cough and cold" one, but the "cough and runny nose" one.

[Serenade]

My 8 year old has tree nut allergies, too, but he is pretty accepting of it at this point. I think because he started with dairy allergies as an infant (since outgrown), and then around age 3 we found out about the tree nut allergies, so he's been at it a long time already, and maybe that helps? He doesn't like the way he feels when he eats something "bad" so he is very careful himself and won't eat anything new without checking first. I think he feels in control, so what you are doing to help your son feel in control will probably help over time.

 

Oh, and I think every parent of a kid with allergies makes a mistake at one time or another, so don't beat yourself up over that.

[kolamum]

Usually just providing something in it's equivalent works. I call ahead to parties and ask what the main desert will be. I make something exactly the same but in a safe way for my child. It helps him not feel deprived. It's hard for a child to sit there and eat a cookie when everyone else is eating a four layer chocolate cake. Kwim?

[Omma]

Just what I needed, girls! I think we were both feeling a little overwhelmed this weekend and I know he stayed up late last night at his grandparents'. He is overly tired and was a bit weepy.

I try not to coddle him. I think, unlike many of the kids here who developed their allergies earlier, he's having a hard time because he suddenly had a reaction at 6, almost 7. It was weird and out of the blue. It's still relatively new to us and we're still learning. I do not promote self pity and do encourage him to be positive. I will keep the peanut allergy thing in mind. That would be terrible to say "at least" and then he's allergic to that "at least" item!

I had a really good talk with him his evening and got to some root issues- a major one is that he thinks my parents don't take the label reading/allergies seriously. I know they do take it seriously but he's not seeing that. I'm sitting them down tomorrow and discussing it with them (they are his caregivers 4 afternoons a week). This will go a long way.

I also apologized again and asked him if he honestly had hard time trusting me and he said, "No, everyone makes mistakes." I believe him and feel better.

We started having him read the labels this afternoon with items are know are safe so he can build some confidence.

Thanks again for all of the guidance you have given me. I'm very grateful.

 

I can so relate to this. We knew my ds had severe allergies to birch trees and environmental allergies when he was about 3 or 4 years old, but we did not find out he had nut allergies until he was about 6 or almost 7. We started him on allergy shots, which have helped. However, unfortunately, we had a hard time stabilizing him and our pediatrician had him taking 1 or 2 Pepcid Complete nearly every single day for a year or two, and I think it really messed up his gut... also, he took Claritin every day as well.

 

The summer after he turned 9 was when he started reacting to things even more and then we found out he was allergic to peanuts as well as carrots, of all things. The only good part of his hospitalization (he was in the hospital off and on for about 2 months due to nausea and severe stomach pains) was that we found out from a neuropsychiatrist that he didn't need the pepcid or even the Claritin on a regular basis. I have so often heard that problems often originate in the gut and I am hoping for healing in this area over time. I also just learned that a lack of Vitamin D can affect dc with food allergies, so I will look into that as well.

 

But our ds ate peanut butter sandwiches up until he was about 9 years old, so I think this peanut allergy is really weird. Even the nut allergy is hard to totally understand because, while we were waiting for his RAST test results when he was 6, he had maple walnut ice cream WITH NO REACTION. The doctor neglected to even let us know about his nut allergies until we called to check in about 2 weeks later. They had FORGOTTEN to tell us this little event of him having nut allergies!!!! This allergy thing is so confusing!!!!

 

Brenda

[NoPlaceLikeHome]

I can so relate to this. We knew my ds had severe allergies to birch trees and environmental allergies when he was about 3 or 4 years old, but we did not find out he had nut allergies until he was about 6 or almost 7. We started him on allergy shots, which have helped. However, unfortunately, we had a hard time stabilizing him and our pediatrician had him taking 1 or 2 Pepcid Complete nearly every single day for a year or two, and I think it really messed up his gut... also, he took Claritin every day as well.

 

The summer after he turned 9 was when he started reacting to things even more and then we found out he was allergic to peanuts as well as carrots, of all things. The only good part of his hospitalization (he was in the hospital off and on for about 2 months due to nausea and severe stomach pains) was that we found out from a neuropsychiatrist that he didn't need the pepcid or even the Claritin on a regular basis. I have so often heard that problems often originate in the gut and I am hoping for healing in this area over time. I also just learned that a lack of Vitamin D can affect dc with food allergies, so I will look into that as well.

 

But our ds ate peanut butter sandwiches up until he was about 9 years old, so I think this peanut allergy is really weird. Even the nut allergy is hard to totally understand because, while we were waiting for his RAST test results when he was 6, he had maple walnut ice cream WITH NO REACTION. The doctor neglected to even let us know about his nut allergies until we called to check in about 2 weeks later. They had FORGOTTEN to tell us this little event of him having nut allergies!!!! This allergy thing is so confusing!!!!

 

Brenda

Has your son seen an allergist? If not, I strongly recommend that he see an allergist. If he already has, I would see another one possibly for another opinion. I cannot imagine an allergist forgetting to tell you about an allergy to nuts.

[NoPlaceLikeHome]

The one I listed is JUST diphenhydramine. It is *not* the "cough and cold" one, but the "cough and runny nose" one.

 

Sorry:blush: Usually cough and runny nose meds have 2 meds. Triaminic has several strips and one of them does have 2 meds from what I gather. I will have to carefully check which one I am buying when get these. I am thrilled they have the strips though since Benadryl has stopped making them:)

[Twilight Woods]

Sorry:blush: Usually cough and runny nose meds have 2 meds. Triaminic has several strips and one of them does have 2 meds from what I gather. I will have to carefully check which one I am buying when get these. I am thrilled they have the strips though since Benadryl has stopped making them:)

 

Benadryl makes a dosing spoon now. I love them.

[sbgrace]

:grouphug: For you and your son. My son had his first anaphylaxis at 5.5 and was diagnosed with nut (and sesame) allergies at that time. So he's had those changes at similar ages.

 

I know sometimes (ice cream at parties for example) my son would like to eat what others can have. That's just his life though. We bring him his favorite treats for stuff like that so there is some food to look forward to. I don't think he feels deprived exactly but it is not fun to not be able to eat anything like others can. It helps my son to know there are other kids with allergies and restrictions. He does know others eat more than he can and sure he does care but life is like that/it is what it is.

 

I talked to my son about your questions to get his take on it all. He told me he's not scared because he knows he only eats the same safe foods. I do know he's concerned when we occasionally introduce something new. He asks us multiple times if we are sure it's safe, does it have a warning, did we call, etc.

 

My son remembers his anaphylaxis (he's had it twice, once was biphasic) and he doesn't want to repeat that. So he has a healthy fear. I would not want him to feel comfortable eating something he doesn't routinely eat--let alone something offered him from McDonalds. I guess I'm saying I feel your son's reaction to his grandparents and his concerns are not only legitimate but could save his life.

 

Here is what I would suggest: You, with him, make a list of all his "at home and grandparents" safe foods and then another list of "safe going out to eat foods" including the restaurant name and specific safe product. He isn't offered and doesn't eat anything not on those lists. His safe stuff should be what is served with grandparents as well as at home. I don't think an anaphylactic kid should be routinely eating "new" stuff anyway. It's just asking for reactions with cross contamination and etc. Really, all his foods should have no warnings on labels AND the companies should be called to make sure the product isn't produced on shared equipment with nuts. You can't do that on the fly.

 

I think your son would feel much more comfortable if he knew what was safe and that is what he had available to eat wherever he goes. Good food. There is no reason for nuts to deprive him. My son eats just as tasty as anyone I believe and he's got sesame which further restricts his choices.

 

I know you've addressed this but you mentioned later the allergist didn't tell you about the nut allergies. I'm wondering if you might be able to see a new doctor for another opinion? Your allergist mentioning benadryl if it handles it is way against protocol. The thing is if a reaction progresses to needing the epi pen it may be too late for it to be effective. Most who die got epi pens...they just got them too late..sometimes minutes too late. So my concern I'd want to address with a different allergist is what if the thing progresses (since benadryl doesn't stop ana) and then it's too late for the epi to work? What if he seems better and then goes biphasic which is often quickly deadly as it involves sudden blood pressure plummets, cardiac, etc. Those would be my concerns with doing benadryl and see if it handles it. My son did go biphasic with his first anaphylactic reaction after I thought benadryl handled the initial reaction. He did have a blood pressure drop. I feel really fortunate he didn't die. You can have a minor anaphylaxis once and then a deadly one next time. So I'm wondering if your allergist is a "good one" given his not telling you about nuts and the benadryl recommendation.

Edited May 31, 2011 by sbgrace

[Ellesmere]

But our ds ate peanut butter sandwiches up until he was about 9 years old, so I think this peanut allergy is really weird. Even the nut allergy is hard to totally understand because, while we were waiting for his RAST test results when he was 6, he had maple walnut ice cream WITH NO REACTION. The doctor neglected to even let us know about his nut allergies until we called to check in about 2 weeks later. They had FORGOTTEN to tell us this little event of him having nut allergies!!!! This allergy thing is so confusing!!!!

 

Brenda

Brenda, I know allergies are confusing. I grew up on PB&J and eating tree nuts with no problem until my twenties. Now I'm allergic to both. After my diagnosis, I had a fit of denial and ate a mini-snickers with no reaction. But I've had three anaphylactic reactions (ironically none of them to tree nuts, but to things I didn't know I was allergic to -- rare allergies) in the last five years. So long, Snickers.

 

My good friend outgrew her cashew allergy in college.

 

Usually, peanut allergies don't cross-react with other legumes. Usually. I recently tried split pea soup and immediately had a reaction after years of eating peas.

 

I hope you get a good allergist. Mine told me after our daughter's initial visit to tell us she neglected to mention our a cat allergy and asked us to call with any questions. Not a huge deal. She had been too busy helping us cope with the results that confirmed tree nut, wheat, soy, peanut, and other allergies. She also knew we don't have pets. But if she had forgotten the tree nut thing, we would have found a new doctor.

 

 

Medically, I have the okay from his allergist to try the benedryl first. His tongue is tingly and he is VERY GOOD at telling me straight away. His allergist feels that it is safe to administer benedryl first. Thanks for all of the concern though-I have to drag information out of his doctors sometimes and it helps to know you all "have my back"! The reaction ds8 had in February was just a tingling tongue. Benedryl was administered within 1 minute and he showed no other systems and was with me for the following 4 hours and I watched him like a hawk.

 

Specifically, I am looking for advise on how to help him cope with his fear and become proactive in managing his allergy. I've seen what a difference this approach has made with his asthma. Although I realize I can't treat his allergy the same way, I'd like to see a similar result. My dh has recommend making him a list of safe foods so he can see all the foods he CAN have versus all the ones he can't. I like the idea but sometimes those foods change so I'm hesitant to try it.

 

I liked the advise to talk about how other people have it worse. We sometimes do this specifically in regards to candy-I tell him treenut allergy is at least better than peanuts (sorry all you peanut people!).

 

Thanks again for all the advise! I'm grateful to have this forum as I don't know anyone IRL dealing with this issue.

 

Do you have a written allergy action plan? Our doctor updates ours annually. We were terrified we wouldn't know when to give the Epi-pen and the sheet really helped us feel better. I don't know if it would help your son at all to have something written if you don't already.

 

Don't rely on your son to tell you that he needs it either. When I had one of my reactions, I became confused and agitated. I insisted I was fine as I began to tingle in my ears. Then, as it became obvious to my family that I was in trouble, my husband had to hold me down and administer the medication to me. I don't fear needles (I get regular blood draws) but it was not at all how I thought it would go in an emergency. Not saying this is typical but just putting it out there and echoing sbgrace's concerns.

 

I also do not have a "safe list". Manufacturers change too much. We stick with the same few companies and make a lot from scratch. The rule is no food sharing, no utensil sharing, lots of baking.

 

Personally tree nuts have been so much harder than peanuts for us. But I'd never say that to your son. But I would be careful ... other allergies do develop and I hope he never gets a peanut one. As I mentioned, I never had them either until I was older.

 

Instead of saying it's better than a different allergy, (and this may not work best for you), we do talk about children who suffer illnesses and other hardships so we don't fixate on what we can't have or how hard it is to not have birthday cake at parties. That's tough, but it's not the same as dealing with cancer or starvation. Not to minimize our hardships, but it really isn't the same.

 

I temper my own fears when I recall that accidents happen, and proper (quick) treatment is effective. All of my severe reactions happened in my own home, with food I fed to myself. On one minor one, my husband made dinner and forgot to check a label on something he had gotten. (How could I be too upset when he shopped and cooked?) With all the allergies we are managing, mistakes happen and we keep the Epi and Benadryl close. We never put the burden of label-checking on anyone else.

 

:grouphug: to all who are going through this tough experience.

Edited June 1, 2011 by Clairelise
another spelling error

[abbeyej]

Sorry:blush: Usually cough and runny nose meds have 2 meds. Triaminic has several strips and one of them does have 2 meds from what I gather. I will have to carefully check which one I am buying when get these. I am thrilled they have the strips though since Benadryl has stopped making them:)

 

Yeah, it can be pretty confusing. I was happy to find the one that makes slipping strips into pockets and purses and everywhere so easy. My concern with the liquid is keeping it temperature-stable. Thankfully not an issue with the strips...

[DawnL]

My son has a ton of allergies, but thankfully none have shown to be life-threatening. When we first were discovering some of his allergies, I found this website to be really helpful...

http://www.kidswithfoodallergies.org/

 

The website has lots of parents who have kids with food allergies. Some of the allergies are very severe. It's really nice to have input from other parents in the trenches, as I've found they often have more knowledge than many doctors, simply through every day experiences.

[SonshineLearner]

You get the allergy Benadryl fast tabs... At least that's what I got. When I needed "emergency" ones for her to pack... and I couldn't get the fast tabs... I got liquid gel caps... I showed her that I could bite through and get to the meds... and while they taste horrible... it'd be what she needed.. (And, actually, 2 at a time.)

 

Vermont Nut Free Chocolates has "m&m's" called Skippers...(I think that's the name..) All the chocolate we've had from there has been wonderful!

[HeyChelle]

Bring him into the kitchen and prepare food together. Cut out all processed foods for a while, maybe forever. My journey through allergies is on my family blog below. We have not dealt with feelings of being deprived because the kids always have something to look forward to. If they can't have someone's birthday cake, that's fine. They know we will be whipping up something in the kitchen together either before or after that party. As far as safe - I bring them into the shopping and preparation process. Teach them to read labels and double check for themselves. And always read labels. Even if you have bought the same item for years, you never know when a company will change the ingredients. Read labels everytime.

 

http://mybluedaisy.blogspot.com/

 

And I don't blame him for skipping McDonald's. blech.

[courtney.byrum]

Benadryl makes a dosing spoon now. I love them.

 

 

That's what we use too. Though when we were in VT over Memorial Day weekend we had an extremely hard time finding any Benadryl at all. Finally Kinney Drugs had it (CVS, Rite Aid, grocery stores did not).

[Mom0012]

It may just take some time to build up trust with him again. You will need to renew your efforts to make sure to read every single label every single time, and if he is really sensitive you might even need to call the company before feeding him things.

 

My son is 11 and had his first analyphylactic reaction as a baby. We've have had 3 mistakes in that much time. One was recent. I read the label on a box of popcorn mix we'd been given for Christmas, but because there were allergens in bold at the bottom, I didn't carefully read each and every item since I assumed it would have been listed with the other allergens. It wasn't and he had a reaction that really scared him. It took him a while to trust me when I gave him food again and he started reading labels himself, which is actually a good thing.

 

As far as your son feeling deprived, I'm sure it's got to be more difficult to adjust when you find out you are allergic to something at an older age like that, but make sure you always have a substitute that he likes on hand. Maybe he can help you come up with a list of treats. If you are in a situation where you are unexpectedly offerred food, and you don't have anything for him, make sure he has something later. I used to keep things in my purse for my son, but now that he's getting older, he really doesn't usually care. The only time he's really expressed feeling deprived or frustrated is when we've gone out to a restaurant and some in my extended family orders an appetizer, which he can never have. At that point, he's usually really hungry, the food smells good, and he might feel a little sorry for himself. I do usually bring something for him in case this happens, but we rarely go out to eat and I'm human, so a few times I have forgotten. That has been translated by him into "I never bring anything for him", which makes me want to bop him, because his food allergies have ruled our family's eating and my life for the last 10 years.

 

Lisa

 

ETA: I love those single dose benedryl spoons as well. They are easy to keep in my purse and great for sending on camping trips or to my parents' house.

Edited June 15, 2011 by LisaTheresa