Oral Allergy Syndrome: Do you carry an epipen?

[joannqn]

Since DS has reacted to apple juice, which is suppose to be ok since it is processed...

 

Since he's reacted with hives covering 1/2 of his face (which my reading tells me is a more severe reaction)...

 

Since he's reacted to oj, strawberries, or blueberries which are all on the alternative fruits lists...

 

Should I insist on getting an epipen for DS?

Should he have a medi-alert bracelet?

 

 

I'm really trying to wrap my head around this. On one hand, I want to let him continue eating foods he's always eaten and trust him to tell me when a food needs to go on his Do Not Eat list.

 

On the other hand, I want to totally avoid all fresh fruits, vegetables, nuts, and any of the higher risks ones that can cause reactions even when cooked (ie. celery and nuts). Without an epipen, I'm afraid to let him have anything that might cause a reaction since I have no way to stop it. Of course, I'll be buying a few bottles of Benadryl to stash in the house, car, and my purse. But what if Benadryl is too late or not enough? Yes, I know anaphylaxis is rare with this but hives is supposedly a "more serious" reaction and we've had that four times already.

 

On my third hand (because all homeschoolers have a third hand, right?), I want to let him have any nonreactive foods when I'm there to monitor and avoid everything when I'm not...because I know there will be people who won't believe him when he says he's reacting. I mean, really, who's ever heard of someone being allergic to apples and pears? I didn't believe him before he started having obvious reactions with hives. We always hear about the big 8 and expect dairy, wheat, eggs, and peanuts but not apples, pears, and peaches.

[Amber in AUS]

I guess you really have to go with your Dr's thoughts on this one. Has he been hospitalised because of the hives? Does he have breathing difficulties with reactions? Has he had adrenalin administered to combat a reaction?

 

An epipen is only going to be helpful he has a full blown anaphylactic reaction. From my understanding Dr's here will not prescribe an epipen unless the patient has already had an anaphylactic reaction. This is based on personal family experience with 4 anaphylactic relatives allergic to various things. Obviously it may be different there and you might be able to talk a Dr into it.

[sbgrace]

He was positive to nuts?

If he was positive to nuts (any of them) in testing no question he needs an epi pen no matter the suspicion of OAS.

 

Outside of that most allergists won't give epi pens for hive only reactions. Our first ana reaction we didn't have an epi pen though I had asked many times for one just in case. My son had extensive hive reactions, asthma (not reactions, but asthma + food allergies together increase ana risk), and a family history of anaphylactic reactions. We still didn't receive an epi pen until we actually had an anaphylactic reaction. His ana was nuts, not fruit. His OAS reactions are fruits.

 

Asthma alone needs a medic alert if he's got asthma. Allergies outside of anaphylaxis and drug allergies typically don't in my understanding.

Edited June 5, 2010 by sbgrace

[joannqn]

No, he hasn't been hospitalized for this. We've only begun to be aware of this 3 1/2 months ago when he broke out in hives after drinking a smoothie (containing none of the usual suspects).

[joannqn]

He was positive to nuts?

If he was positive to nuts (any of them) in testing no question he needs an epi pen no matter the suspicion of OAS or not.

 

Outside of that most allergists won't give epi pens for hive only reactions. Our first ana reaction we didn't have an epi pen though I had asked many times for one just in case.

 

 

The allergist thinks his reaction to peanuts is a false positive because he eats peanut butter all the time without symptoms of allergy.

 

The first anaphylaxis without a pen is what scares me.

[sbgrace]

Ah. That's hard because there are false positives and if he can eat peanuts without reactions it's very likely one of those false positives.

Tree nuts were negative or they didn't test? (Asking because some of those cross with OAS I believe).

[rafiki]

.

[Murmer]

Find a different allergist who will prescribe an epipen. Dd is milk allergic and we carry an epi pen everywhere with us even without a full blown reaction (although we have had an asthmatic reaction and vomiting). Our doc is of the safe than sorry camp...then I asked abt giving her shellfish and his response was well you already have the epi pen.

[ChristusG]

Yes, I do. I have only shown a minor reaction to bananas and my doc gave me an epipen. He said that the reaction could be worse next time or I could develop new allergies.

[Dana]

I'm amazed to hear that some doctor's won't prescribe an Epi until anaphylaxis. That's too late! I believe our son is alive because we had an Epi and we listened to him despite not seeing signs of an allergic reaction.

 

He was diagnosed with a dairy allergy at 3 months. After a really bad reaction with hives at about a year and a half (we weren't aware that the bread wasn't safe and weren't thinking to check labels), our allergist told us to carry Epi-pens. At 5 years old and at home, he had an anaphylactic reaction to cashews. He had NONE of the symptoms of an allergic reaction that he'd had before. My husband even questioned if he was telling us the truth. We gave Benadryl and Orapred and headed to the ER just to be safe. I ended up giving the Epi in the car and we were told if this happens again to call an ambulance instead.

 

I would fight to get the Epi ASAP.

 

The bracelet is iffy. I've heard of them not being looked at at hospitals. We got it mainly so our phone number would be linked with our son.

I think you're right on your third hand. We knew about our son's dairy allergy and we weren't sure he was having a reaction. While you're still learning how to live with the allergy, don't have him eat anything without you there - and train him to check with you before eating anything.

 

You will find the new normal. Give yourself time to adjust. And get that Epi & carry it with him.

[NoPlaceLikeHome]

The allergist thinks his reaction to peanuts is a false positive because he eats peanut butter all the time without symptoms of allergy.

 

The first anaphylaxis without a pen is what scares me.

 

Has he been tested again? I would want to carry a dual pack epi-pen and benadryl melt-a-way film strips at all times as ordered IMHO. Any food could cause anaphylaxis from what I understand and you cannot predict whether a reaction will be mild or fatal.

 

http://www.foodallergy.org/

 

I am curious about the false positive since my son is allergic to peanuts. Was it the RAST blood test or the skin test and were the results only slightly positive or very positive?

[rafiki]

.

[NoPlaceLikeHome]

My son has had RAST and skin testing. With RAST there is a 95% of a true peanut allergy if it is 14+. Also a RAST of 1 is likely to outgrow soon, 15 outgrow in at least 3 years, and 75+ unlikely to outgrow. This is consistent with what I've experienced the past 8 years with my kid's scores. Peanuts also fall under OAS/tree allergy cross reactions, relating to legumes.

 

My ds had a skin test of 4++++ and a RAST of class 0-1 at 0.15. I was told he was severely allergic based on skin testing. He only had a very mild reaction after eating a peanut butter cookie and I have been very very careful to avoid all peanuts and tree nuts since then. He similar results for tree nuts as well.

[joannqn]

My DS had the skin prick test. The peanut reaction was minor, especially when compared to the tree reactions. I wasn't there to ask the questions about how severe things were...with numbers and things. I do have the report but no information about how to interpret the report except for "the ones that are highlighted are positive".

[NoPlaceLikeHome]

My DS had the skin prick test. The peanut reaction was minor, especially when compared to the tree reactions. I wasn't there to ask the questions about how severe things were...with numbers and things. I do have the report but no information about how to interpret the report except for "the ones that are highlighted are positive".

 

The link I provided has lots of useful info as well as WebMD.com, MayoClinic, and medscape.com.

 

I have heard that sometimes minor reactions may be false positives so I think it is worth asking the allergist. If if has been a while since your child has been evaluated then I would consider seeing the allergist again.

I found some useful info on this site as well:

http://www.oregonallergy.com/id5.html

 

I also have heard that those with asthma are at greater risk for severe allergic reactions. This is something you could ask your doctor about as well. I still take all precautions with ds even though he does not have asthma. It does give me a little more peace of mind and thank goodness that fatal reactions are extremely rare. I still however always check every single ingredient every single time and always have the epi-pens and benadryl on our person or literally within easy reach. Currently I am training my ds to carry his meds in a fanny pack since he is 8:)

Edited June 5, 2010 by priscilla

[sbgrace]

My ds had a skin test of 4++++ and a RAST of class 0-1 at 0.15. I was told he was severely allergic based on skin testing. He only had a very mild reaction after eating a peanut butter cookie and I have been very very careful to avoid all peanuts and tree nuts since then. He similar results for tree nuts as well.

http://articles.latimes.com/2009/jul/20/health/he-allergy-tests20

IgE tests are very good at confirming the lack of an allergy -- but only when the antibody is just plain missing. In many cases, for reasons scientists don't understand, just about everybody has antibodies to foods they don't react to.

The same is true for skin tests, which involve dipping a needle into a solution of the suspected allergen, then pricking the skin and watching for mosquito bite-like bumps to appear.

These skin tests are fairly reliable when they're negative. Positive reactions to foods, on the other hand, are wrong up to 50% of the time.

 

 

There are better articles out there but this is the first I found.

Food allergy testing has a 50% false positive rate for foods. It's more accurate for environmental allergies I believe. A good allergist will confirm a questionable result (i.e. a child has consumed the food without an obvious reaction but there is a possibility of food allergy) with a food trial.

 

Skin prick reaction severity (wheel size) don't necessarily predict severity of allergy. However, if you saw even a mild actual reaction to peanut you've got a peanut allergy and you need the epi pen and etc.

 

My son's anaphylaxis was biphasic and severe. He had throat swelling and full body hives very soon after eating trace nut (we think cashew). Two hours later his blood pressure dropped, his face swelled, he began vomiting and having diarrhea. We didn't have an epi pen. I missed the initial reaction because I was an idiot about all this. He made it to the ER and I feel very fortunate he lived honestly. It doesn't hurt to have an epi pen if a food allergic child also has asthma. But it's hard to convince doctors of that at least around here.

 

Any child who has any two body system reactions to a food has had anaphylaxis and needs an epi pen. So food skin reaction with asthma is anaphylaxis. Vomiting with facial swelling/runny nose is likely ana. Not every anaphylactic reaction involves hives or any skin symptoms. Anaphylaxis can be relatively mild one time and then deadly the next. In retrospect on another occasion my son had been at a birthday party and had diarrhea/stomach pain and asthma after eating the cake. That cake was chocolate and very likely nut cross contaminated. I didn't connect them to food allergy let alone anaphylaxis at the time because I expected to see hives, throat swelling or something else that screamed allergy/anaphylaxis to me. All his food reactions had been hives previously. In his anaphylactic reaction he did have hives but I still missed it. He told me he had a "weird rock" in his throat. I was worried given the hives but I thought if his throat was swelling he'd be in distress, etc. It's not always obvious. And if it had progressed to fully closing his throat it would very likely have been too late even for an epi pen if we had one at the time (we didn't). A significant percent of kids who die from anaphylaxis got an epi pen at some point. But they need it very fast for it to be most effective. Delay/waiting to see, etc. is deadly.

 

Any child allergic to peanuts, tree nuts, sesame seeds, shellfish, etc. foods that have a high correlation to anaphylaxis needs a two pack of epi pens even if anaphylaxis has never been seen.

 

And then...anaphylaxis even among kids with food allergies is rare. This is especially true if those allergies don't involve "high ana potential" foods. Lots of kids will have food allergies and asthma and never have anaphylaxis. So the average food allergic child is at very small risk of anaphylaxis.

Edited June 5, 2010 by sbgrace

[mom2koh]

My son has reactions to apples, strawberries, peaches and pears as well. He also reacts to sunscreens and soaps.

 

We have a script for an Epi-pen, but I have not filled it yet. I will get it filled and carry it with us as ds is having more reactions recently!

 

Good luck.

[StartingOver]

I would fight, argue, or even change doctors, whatever it takes to get an epipen.

 

My daughter had her first reaction at birth to cows milk ( she was transferred to another hospital and they gave her formula ), she threw it up immediately. I knew there was an issue then. I did a total elimination diet while breast feeding ( as she was even sick with my milk ) and thought milk and eggs were the problem. When she was 6 months old I fed her Gerber pears 1st foods, she immediately started swelling in her face, gasping for breath and hives. I gave her benadryl and a xopenex treatment, while waiting for the ambulance. It was enough to calm the reaction, they did not transport her. ( I later found out that pears contain no milk, but are made on the same machines that milk products are, so her reaction was to trace amounts. )

 

My pediatrician thought I was nuts, I screamed and hollered, threatened and demanded. He finally did an allergy test. She had the highest reaction the lab had ever seen to eggs and milk, so much so that my ped even refuses to do a scratch test. These were the two I suspected anyway.

 

He immediately wrote me a prescription for an epipen Jr. We take it everywhere we go, even though she has never truly went anaphylactic. I carry food with her everywhere we go, she never eats anything I haven't prepared. But she is 2, I am sure it will happen sometime. I am prepared and ready if it does.

Edited June 5, 2010 by alatexan68

[sbgrace]

I would fight, argue, or even change doctors, whatever it takes to get an epipen.

 

My daughter had her first reaction at birth to cows milk ( she was transferred to another hospital and they gave her formula ), she threw it up immediately. I knew there was an issue then. I did a total elimination diet while breast feeding ( as she was even sick with my milk ) and thought milk and eggs were the problem. When she was 6 months old I fed her Gerber pears 1st foods, she immediately started swelling in her face, gasping for breath and hives. I gave her benadryl and a xopenex treatment, while waiting for the ambulance. It was enough to calm the reaction, they did not transport her. ( I later found out that pears contain no milk, but are made on the same machines that milk products are, so her reaction was to trace amounts. )

 

My pediatrician thought I was nuts, I screamed and hollered, threatened and demanded. He finally did an allergy test. She had the highest reaction the lab had ever seen to eggs and milk, so much so that my ped even refuses to do a scratch test. These were the two I suspected anyway.

 

He immediately wrote me a prescription for an epipen Jr. We take it everywhere we go, even though she has never truly went anaphylactic. I carry food with her everywhere we go, she never eats anything I haven't prepared. But she is 2, I am sure it will happen sometime. I am prepared and ready if it does.

 

That is anaphylactic. Maybe you know that already? Any two body systems is anaphylaxis. Hives/swelling/breathing...ana.

[Photo Ninja]

You need an Epi. If your doctor won't give you the prescription, it is time to find a better doctor. This is not something to mess with.

 

We have had an Epi for my dd since she was 1 yo. She also carries the melt away Benadryl strips with her at all times. This is much easier than carrying liquid Benadryl, something she has done since she was about 12 yo.

 

It is much easier to carry a package of Benadryl melting strips than a bottle of Benadryl, and they melt immediately, something important is the throat is swelling and the child is having difficult swallowing.

 

My dd can't eat peaches, apples, cherries, or pears either. Strawberries are a 50 - 50 chance. She told me a couple days ago that she likes them so much that it is worth the risk. Since she has not had a reaction worse than some hives from them, and she is 17 yo, I let her decide. She is experienced enough with her body and allergies to know what to do and who to tell if there is a reaction. She can eat them all if they are cooked, though, so I suspect OAS with them. Other foods and animals are regular allergies that lead to anaphylaxis.

 

But please, get the Epi. It is not worth the risk!

[StartingOver]

That is anaphylactic. Maybe you know that already? Any two body systems is anaphylaxis. Hives/swelling/breathing...ana.

 

Yes I know, but being that I was a paramedic in a past life, I treated her symptoms. So......... by the time the ambulance got here she was recovered mostly only having a few remaining hives. It takes about 20 min. to get an ambulance to my house. So it wasn't called an official anaphylactic..... since I was the only one to see it LOL. I think this might also be the reason my ped. fought so hard, the thought I was one of those know it all parents - paramedic.

[momof3sofar]

Goodness yes get the epipen! My daughter is allergic to milk, eggs, wheat, and some enviromental things. She has never had an ana reaction to anything but her allergist told me he wants us to have it anyway. He said he would much rather we pay 30.00 and never use it then to need it and not have it. Allergies are not something to mess with. If your current doctor will not perscribe it, I would not hesitate to change doctors!

 

Good luck

[NoPlaceLikeHome]

You need an Epi. If your doctor won't give you the prescription, it is time to find a better doctor. This is not something to mess with.

 

We have had an Epi for my dd since she was 1 yo. She also carries the melt away Benadryl strips with her at all times. This is much easier than carrying liquid Benadryl, something she has done since she was about 12 yo.

 

It is much easier to carry a package of Benadryl melting strips than a bottle of Benadryl, and they melt immediately, something important is the throat is swelling and the child is having difficult swallowing.

 

 

 

But please, get the Epi. It is not worth the risk!

 

:iagree: I carry the melt-a-way strips as well since as an RN I feel they are safer to use in an emergency than liquid or tablets and my son's allergist agrees. I was taught not to give things by mouth in respiratory emergencies as well as with nausea and vomiting. The benadryl film strips just melt in your mouth and they also might be absorbed quicker as well. Ask your doctor IMHO. They can be tricky to find sometimes, but I have had luck getting them at CVS or your pharmacist may special order them. They come in child and adult dosages of 12.5 mg and 25 mg but ask your doctor what to use in an emergency since he may want a higher dose than the package indicates.

 

One more important thing is always give epi-pen first for anaphylaxis and then benadryl ad ordered. Do not delay epi-pen for other meds, give epi pen first for anaphylaxis.

Edited June 5, 2010 by priscilla

[NoPlaceLikeHome]

http://articles.latimes.com/2009/jul/20/health/he-allergy-tests20

There are better articles out there but this is the first I found.

Food allergy testing has a 50% false positive rate for foods. It's more accurate for environmental allergies I believe. A good allergist will confirm a questionable result (i.e. a child has consumed the food without an obvious reaction but there is a possibility of food allergy) with a food trial.

 

Skin prick reaction severity (wheel size) don't necessarily predict severity of allergy. However, if you saw even a mild actual reaction to peanut you've got a peanut allergy and you need the epi pen and etc.

 

My son's anaphylaxis was biphasic and severe. He had throat swelling and full body hives very soon after eating trace nut (we think cashew). Two hours later his blood pressure dropped, his face swelled, he began vomiting and having diarrhea. We didn't have an epi pen. I missed the initial reaction because I was an idiot about all this. He made it to the ER and I feel very fortunate he lived honestly. It doesn't hurt to have an epi pen if a food allergic child also has asthma. But it's hard to convince doctors of that at least around here.

 

Any child who has any two body system reactions to a food has had anaphylaxis and needs an epi pen. So food skin reaction with asthma is anaphylaxis. Vomiting with facial swelling/runny nose is likely ana. Not every anaphylactic reaction involves hives or any skin symptoms. Anaphylaxis can be relatively mild one time and then deadly the next. In retrospect on another occasion my son had been at a birthday party and had diarrhea/stomach pain and asthma after eating the cake. That cake was chocolate and very likely nut cross contaminated. I didn't connect them to food allergy let alone anaphylaxis at the time because I expected to see hives, throat swelling or something else that screamed allergy/anaphylaxis to me. All his food reactions had been hives previously. In his anaphylactic reaction he did have hives but I still missed it. He told me he had a "weird rock" in his throat. I was worried given the hives but I thought if his throat was swelling he'd be in distress, etc. It's not always obvious. And if it had progressed to fully closing his throat it would very likely have been too late even for an epi pen if we had one at the time (we didn't). A significant percent of kids who die from anaphylaxis got an epi pen at some point. But they need it very fast for it to be most effective. Delay/waiting to see, etc. is deadly.

 

Any child allergic to peanuts, tree nuts, sesame seeds, shellfish, etc. foods that have a high correlation to anaphylaxis needs a two pack of epi pens even if anaphylaxis has never been seen.

 

And then...anaphylaxis even among kids with food allergies is rare. This is especially true if those allergies don't involve "high ana potential" foods. Lots of kids will have food allergies and asthma and never have anaphylaxis. So the average food allergic child is at very small risk of anaphylaxis.

 

Thanks for the info:) I did ask my son's allergist about false positives with the skin test and he said that since my son's reaction was even larger than the top of the scale that it was not a false result for peanuts and tree nuts:( I still hope though that maybe this will go away but his allergist said he is unlikely to grow out of it. I do hope for the oral peanut protein therapy to become available though:)

[KristenS]

Reading with interest, and glad to know about the Benadryl strips. My son's got mild asthma, no food allergies that we know of, but probaby the usual pollen stuff and maybe wasps, and he had horrible sensitive skin as a baby and toddler. We're working on learning to carry the inhaler everywhere (his is so mild that we usually don't need it, and the worse cases tend to be virus triggered so we're home with the nebulizer anyway). I think I'll find those strips and keep them in the same pack, just in case. VERY good to know about!

[NoPlaceLikeHome]

Reading with interest, and glad to know about the Benadryl strips. My son's got mild asthma, no food allergies that we know of, but probaby the usual pollen stuff and maybe wasps, and he had horrible sensitive skin as a baby and toddler. We're working on learning to carry the inhaler everywhere (his is so mild that we usually don't need it, and the worse cases tend to be virus triggered so we're home with the nebulizer anyway). I think I'll find those strips and keep them in the same pack, just in case. VERY good to know about!

 

 

Keep in mind that if you are concerned about anaphylaxis, then you need epi-pens since the epi-pen is the first treatment for anaphylaxis.

 

One other thing about the melt-a-way film strips is I would practice opening one of the packages and read the directions. You simply place the thin strip on the tongue and ask them to close mouth to prevent them from drooling the med out if possible till it is absorbed. It takes about a minute to be absorbed. I also find it handy to keep a small scissors with the strips to make it easier to open the package. I save expired ones to teach loved ones how to open and administer the strips as well. It is good to save expired epi-pens to practice and to teach how to use epi-pens on an orange very carefully after first practicing with the trainer and reading the literature:) it is better to learn before an emergency.

[Luckymama]

My 15yo has multiple food allergies and OAS (apple mainly during tree pollen season). She carries Benadryl meltaway tabs, epis, and her inhalers wherever she goes. She can't use the Benadryl strips because she is allergic to one of the ingredients (!!).

 

She was originally tested because she was having recurring, several-times-a-week, intestinal cramping and horrible pain. I wanted to eliminate a true allergy to anything before moving to a food intolerance. We made an appointment for a few weeks away (first opening). One morning she woke up with a massive rash over both legs. I took her to school and called the allergist once the office opened. They told me to bring her in right away. The rash was hives, small ones that I didn't recognize as hives as I had only seen big blotchy hives. Because I hadn't given her any meds, she was able to be skin-tested right away. Postive to a gazillion things, some believed to be false positives. RAST testing also showed the same allergies. We treated the false positives as positives for six months because she was just SO reactive to everything. Then she underwent food challenges in the allergist's office for those three false positives over the next six months.

 

In the past three years, she has added more allergies to her list-----watermelon (so avoiding all melons, sigh) and kiwi (so avoiding the related avocado, banana, chestnut, and latex). She has the option of food challenges for the related items once she chooses to do so. The allergist and I want her to make the decisions as she transitions to total control of her health :) Retesting and potential challenges will be done before she starts college, because she might need to have accomodations made.