:help:scared Help - new to dealing with severe peanut allergy

[MaryTheres]

Hi ladies,

I am pretty upset. My DS (2.5 years old) is apparently severely allergic to peanuts and never having had to ever deal with any sort of food allergy before DH and I are overwhelmed, confused and are apparently screwing-up big time. Any helpful advice or tips would be very welcome. So, Ds has had two pretty severe reactions recently. After the first severe one (I say severe b/c apparently he has been having reactions before, i.e., throwing up but I we never realized that it was in fact a peanut allergy ), which he actually had while he was with my MIL, I took him to the ped and got him tested and he came back allergic to peanuts. So we have an epi-pen and benodryl. Last night we went to the olive garden and I didn't mention the allergy to the waiter or anyone. Not being used to this, I just assumed that nothing we were eating seemed to have peanuts so he's fine ... Well at 2am he wakes up all swollen and choking. Obviously, something he ate had some sort of peanut in it. It was very, very negligent of us not to talk with the waiter about the allergy. We just aren't used to this.

First of all, I can't figure out why the reaction took so long this time? That was scary in and of itself. Because it had been a few hours since we had eaten and we hadn't noticed an reaction we assumed he was fine and would be fine. He was sleeping in his own bed (I do sleep with him if he needs me to or if if he wakes up but generally he does do a lot of sleeping on his own as well) - what if I hadn't heard him? what if he couldn't call out to me b/c of the choking? What if my mil had been babysitting and just left the door open to hear him but didn't turn on the monitor? she wouldn't have heard him choking!

So last night's reaction really scared me. I mean, really scared me. I almost used our epi-pen but the benodryl did seem to make him better - he told me his throat had stopped itching and I noticed he stopped chocking. His facial swelling went down a little bit as well.

So, now I am getting very anxious. First, now I realize just how very important the epi-pen is. Which, in turn, has me really concerned about the epi-pen b/c it seems a very precarious medication and we have extreme temperatures here. My big phobia is that we will be out somewhere and DS will have a reaction need the pen and it will be rendered useless because it was exposed to temperature less than 59 degrees farenheit or more than 77 degrees farenheit. Or we won't have it with us for that reason, i.e., b/c it's a hot day or a rather cool day and then we'll need it and won't have it. Is there another more reliable, more stable alternative?

Also, what do you all do about b-day parties and such? (we attend alot of them b/c our entire neighborhood has tons of children DS' age). I don't know how we could go to a b-day party and DS not be able to have cake. And now, there is no way I feel comfortable with him eating cake from a bakery if I can't verify that the bakery did not use some sort of peanuts or peanut derivative. Do y'all talk to the hosts about it before going? Do we bring our own cake? what do we do?

Also, I still nurse DS to sleep. Does this mean that I have to avoid all peanuts as well? COuld I be triggering the allergy?

I did just order the book "Understanding and Managing Your Child's Food Allergies" So that should help me, but I'd really like to hear some tips/advice/stories from others who have some expereince dealing with this day-to-day.

Thanks in advance.

[LauraLoo]

Here are some websites to get you started:

http://www.foodallergy.org/
(There is a section on here for the newly diagnosed.)

http://www.peanutallergy.com/

* Until you get some things under your belt, I would highly advise you to not eat out at ANY restaurant. Also, while it is a major pain, read EVERY single label on the foods that you are preparing at home. I would also advise you to go through ALL of your food and eliminate all foods that contain peanuts or any other nut products and those foods that are processed in plants where peanuts and nut products are handled. Get rid of these foods or give them away immediately. Make sure that your home is a SAFE place.

I will tell you this - there is a lot to know and at first it can seem VERY overwhelming. My ds was diagnosed with an anaphylatic peanut allergy right before he turned 2. He is now almost 7, and it has gotten much more manageable.

Keep asking questions.

[nalo]

While there is so much to say and I know you will get great advice and support from other mamas I just wanted to answer a few of your questions. Since he has an anaphylactic (sp?) allergy to peanuts you absolutely need to discontinue all peanuts, peanut oil, and peanut ingredient foods in yourself as well. I would say to continue this until he is done nursing but as long as he has this allergy you need to avoid having any of these products in the house and having any residue on your hands, mouth, clothes, etc. if you choose to eat a peanut product outside the home when you're not with your LO (after weaning). I do not know the answer to your epi-pen temperature question but for the time being I would keep it in an insulated container to help it not get too hot or cold when you are out and about. You must make sure he is NEVER without the epi-pen and start now to educate him about peanuts not being a safe food for him. I would also consider buying a medical ID bracelet that lists his allergy on it. As far as birthdays go, that's a tough one because even if you alert families to the no peanut thing SO many foods have the risk of cross contamination (such as cake mixes). You may choose to always make a special safe treat for him to bring but also alert the families to the allergy so that they can plan accordingly and not use any peanut items. Once he starts school - since peanut allergies are so common these days - you need to let them know about it but most schools are already peanut free since at least one kiddo is allergic. For schools who are not peanut free there is usually a peanut allergy table for lunch time where those kiddos can sit and not be exposed accidentally to peanuts. I believe other kids/friends can sit there also if their lunches are checked first and there is monitoring to make sure no food sharing happens. Sorry, jumping the gun here but I'm just typing what comes to mind. I am SOOOO sorry you had such a scare but you can turn that into a teaching tool to help him understand why it's so important not to eat certain things now. I know it's quite a learning curve but you'll figure it all out quickly - you have to - and once you integrate this new way of being you will all be okay, I promise. Hang in there and be vigilent! Hope you get lots of feedback and support here.

[MaryTheres]

Thank you so much ladies! The websites were very good especially the peanutallergy.com one...

[4Blessings]

Also check out The Peanut Allergy Answer Book by Dr. Young.

Good Luck

[k9sarchik]

Did you get DS tested for all nuts? My sister and I both are extremely allergic to all sorts of nuts, not just peanuts. So you might want to check for that. I am also very allergic to pine nuts, which they have at Italian restaurants. Pesto sauces have nuts in them, or they may put nuts in salads. Even things like key lime pie crust could have nuts in it.
Due to DS's delayed reaction, I think that it was a different kind of nut and not a peanut. But that's just me and how I react if I eat a Pecan or other nut. Peanut is usually immediate, where other nuts take a while for me to react.

When I was growing up it was hard. Pretty much bakery was out of the question unless I could ask the person who prepared it. You will have to notify your DS's school when he attends about the allergy. When you take him to b-day parties, notify the mom who is throwing the party about the allergy and offer to bring food that you prepared yourself.

You will need to get really good about reading ingredients and talking to wait staff about ingredients.
Hang in there. It will be less overwhelming once you know how to look for these things. Definitely keep the benadryl close. I can't tell you how many boxes of that stuff I've had to buy in an emergency because I forgot to bring it on a trip.

[lablover]

For birthday parties I would make a batch of safe cupcakes (I used the Cherrybrook Kitchen mix because I was avoiding eggs for my DS) and freeze them. Then for every party I would pull one out, let it defrost for awhile, and it was good to go. My son never cared that his cupcake was different from the other dessert so his were easy - always yellow cake with white icing. A couple of times friends would ask for a cupcake so that they could decorate it the same as the others, BUT he only had a mild egg allergy. I will not allow this for my peanut allergic DD when she starts needing a treat. Also, bakery food is extremely high risk for peanut allergic kids due to cross contamination.

I recommend the book Food Allergies for Dummies, by Dr. Wood. The book was published in 2007 so it's recent. He is an allergist at Johns Hopkins and has a peanut allergy himself.

[Sweetjane]

We keep our epipen in an insulated lunch bag, and I'm always careful to keep it in a shadier type of area in the heat or kind of wrapped up in the colder weather. You should ALWAYS have it with you. Also, your description of his reaction alarmed me...I think I would have administered the epipen, since you said his throat was itching and making him cough...Do you have an emergency plan for your allergist going over exactly what you need to see to use the epipen? And even if Benadryl appears to be working, you must really monitor him after that, since it can mask an anaphylactic episode which may reappear. Has he been checked for other foods as well?
Regarding restaurants...we just do not eat out. It's hard and it sucks but I just do not trust it.
Good luck. Oh and check out Kidswithfoodallergies.org and peanutallegy.com

[ainh]

Looks like all the bases I could think of have been covered. I was immediately thinking of pine nuts when you mentioned Olive Garden. Delayed reactions are scary. Never be hesitant with the Epi. Most of us are scared to give it and feeling better doing Benadryl first, but they say that even delaying by a minute or two can make the difference between life and death. When in doubt, EPI! If you have an expired Epi or leave one out in the freezing car overnight then use it on an orange. It'll give you confidence and you'll feel better having done it once before. They say that people usually forget to leave it in for the full 10 seconds...that's the main mistake (besides delaying giving it in the first place).

Also, it sucks that our kids can't eat the birthday cake. but that is the reality for some of us. He'll get used to eating his own special cupcake. Heck...at the last birthday party we went to half of the kids wanted our "special" cupcakes (I bring extra for that reason). I too use the Cherrybrook Farms Chocolate Cake mix for cupcakes.

Hugs! It's so scary to realize that food can be hazardous to our little ones. It's a big adjustment too. But you'll do great and so will he.

[Ducks]

First of all, I want to give you hugs. I know how overwhelming this can be at first. Our daughter has severe dairy, egg and peanut allergies, and both my husband and I have made mistakes that have ended her up in the ER. But we're better now about being ultra careful. It comes with experience unfortunately.

Secondly, don't hesitate to call an ambulance. Anaphalactic reactions are unpredictable. If there is any indication of difficulty breathing, call 911 and use the epi-pen. Always carry the epi-pen with you, no matter what the temperature is outside. It can buy you a few minutes until the ambulance arrives. We have 4 epi-pens - 2 for the house, one for my purse and one for the family back-pack. Also, be aware they expire within a year, so keep an eye on the expiration date and call the allergist for a new prescription in good time.

With regards to eating out, we rarely go to restaurants anymore. BUT, when we do, we bring Ciara's dinner with us. Sometimes I call ahead to make sure the restaurant has no problem with that. Usually they are happier about that than having to prepare "safe" food.

The other question I believe you had was about birthday parties. We haven't really had to deal with this yet, but I do have a stash of safe cupcakes in the freezer that we break out if a class-mate is having a birthday celebration. Ciara is only 2.5 so I don't think she even notices the difference yet.

Thats all I can think of. It gets easier as you make the changes in your life. Good luck.

Sinead

[mama_nomad]

you've gotten some great advice here, and i also want to reiterate that it will become second nature for you after some experience. that type of reaction must be VERy frightening, but knowing that others deal with this, and make it work should give you some peace.

i just wanted to add that i always find out what someone plans on serving at a b-day party and make something similar myself ahead of time and bring it. my dd is so excited to have a treat period that she doesn't care that it might be somehwat different. also she is almost 6 and has been dealing with allergies since birth, and she is so well-adjested about it--she takes a sense of pride that she makes the choice to avoid certain things for the sake of her health, instead of being all bummed that she can't "have what the other kids are eating"


also a brand that has saved us is Enjoy Life, which makes baked goods in a dedicated nut (and gluten) free factory. i always have a few boxes of cookies around, or the cereal bars in my purse. if cooking everythign from scratch seems too overwhelming at first, find some brands that are "safe" and stock up.

get a few favorite recipes under your belt that your child really likes and master those....we bring to food to restaurants frequently, and if i want to call ahead i usually call around 3 or 4 in the afternoon, during prep times (not during busy food service times!) and ask to talk to the chef. if you live in a big city there might possibly be some restaurants that cater to people with food allergies and are nut-free.


i promise it will get easier!!! expect that you might make some mistakes, but you will be prepared and you can be calm and react quickly and reassuringly to your son...and you'll learn together. you are not alone!

[naturegirl7]

My son is contact reactive to peanuts - he breaks out in hives and has facial swelling and trouble breathing just from touching toys or playground equipment that other kids have played with after eating peanut products. We are also allergic to a TON of things.

Our doc reccommended that we avoid ALL seeds and nuts due to a cross contamination issue. Read labels to see if they admit to processing peanuts with that products. Better yet - call or email the company directly and make sure that the product in question is completely safe. We have found a few "safe" brands and stick with those. WE very very rarely eat out - but if we do, it is in a place like Chilis that provides specific allergen friendly menus (still be on your guard and triple check the plate to be sure it came out correctly - and request a manager handle/supervise your order). Avoid ChickFilA - they use peanut oil in their fryers! A suprising number of places do use peanut oil to cook still.

Some brands I have had success with:
Enjoy Life cookies, cereals, cereal bars, etc
Sunbutter - sunflower seeds, but in a dedicated nut free facility
Spectrum Palm Oil Shortening - NOT processed with peanut oil, other spectrum oils are though.
Newmans Own Olive Oil - only oil they process.
Newmans Own raisins/prunes/etc - not processed with peanuts either.
Just Tomatoes fruit and veggies - process soy, but no nuts, and soy is on seperate equipment.

As for parties, etc - your child has only one allergy and it requires ingestion - so in time parties will be easy for you! Call the party mom ahead of time to find out what is being served, what kind of snacks and cake. You can provide "safe" alternatives for your DS to eat while there - like a mini cake or cupcake that matches whatever kind of cake is being served. Or most times, other parents will want to make it a safe place for your child and will ask what to serve/not serve. You don't have to make stuff from scratch either - Gluten Free Dreams (I think - it is something Dreams) has nut free facilities and make yummy cake and cookie mixes.

From a safety standpoint - carry 2 epis at all times. It only last about 20 minutes. And depending on where you are - the ambulance people may not have more. paramedics carry epi but EMTs and first responders do not. You want to make sure you have enough epi to last you as long as it takes for the ambulance to get to you, load your child up, and rush them to the ER. That may be more than 2, insist your doc give you as many as you may need. Ask for a trainer pen package too - it is invaluable! It is a double pack that comes with a trainer pen - practice with it every day so that you are all familiar with it and know how to use it without hesitation in an emergency. My DS could get the general steps correct himself by 2. He doesn't have enough power to complete the injection - but all the steps are correct.

Also - I have found the benadryl fast strips take effect faster than liquid. That time can make a world of difference. And, talk to your doc about what signs mean that YOUR CHILD needs the Epi. Usually any respiratory issues mean use the Epi. If you are unsure, call 911 and explain to them what is going on and see what they say.

Get some allergy alert gear - there is a specific belt pouch made to hold epi pens. Including insulated ones I think. As for the temp - we live in Central Florida. You learn how to wrap a hand towel around the pens and pack it in icepacks or against a frozen water bottle. Use a fridge thermometer to make sure you are getting the temp right. Then you can enjoy days at the beach, etc without worrying that your epis will bake and fry. NEVER EVER EVER leave your home without your epis - not even if it is just to go for a 5 minute walk down the block.

Ummm. what else.... oh I saw the great allergy alert shirts and made my own for DS for his birthday last year. He wore a shirt that said "PLEASE DON"T FEED ME I have food allergies" all day - even though it was a party at our house with family. There were some foods there for people to eat that would have made him sick (non of his ana allergies, but his many delayed allergies/intolerances). And since my family equates feeding kids with loving kids - I was not willing to take a chance, so he wore his shirt. He loved it too. LOL Not sure an older kid would enjoy it, but he loved all the attention he got and the fact that mommy had made a special shirt just for him. Get a med alert bracelet too. There are allergy kids stickers/pins/lunch bags to designate him/his stuff too for school and daycare.


Also - reactions can take hours to happen - the immune response is slowly building until it becomes life threatening. Next time it could be immediate or it could take a while first. There is no knowing. Also be on the alert for "rebound reactions" - if you have a reaction, watch your DS for atleast 4 hours after the reaction subsides. If you go to the ER, insist that you are kept and observed until that window has passed. It is not uncommon to have a second (sometimes more intense) reaction within that window.


As for nursing - YES your must avoid peanut products and anything that may also have cross contamination. Nursing will dramatically help your DS, so don't feel that it is something you need to stop, but watch your diet so that you don't trigger a reaction in him.

ANd know it does get easier. At first it is insanely overwhelming, but in time it gets easier - especially once you figure out what is safe and what is not. It really does become a way of life too. We have been peanut, tree nut, seeds, soy, most legumes, dairy, eggs, gluten, rice, eggplant, squash family, melon family, avacado, kiwi, mango, and banana free for a year and a half now! I say we cuz I am on the same diet cuz DS is still nursing (thank god!!!) and DH is on it by default cuz I refuse to make two meals when I am already cooking so much from scratch.

Check out kidswithfoodallergies.com and allergykids.com/org and peanutallergy.com/org (not sure which .whatever it is). They have alot of ideas, recipes, and just plain ol' support. And feel free to PM or email any time!

[JaneS]

Also be careful of sesame (such as hummus). Apparently in countries that eat a lot of sesame it is becoming as fast growing an ana allergy as peanut.

[MoonWillow]

My 14 month old is allergic to peanut, almond, dairy, egg, tomato and wheat (that we have identified so far). It sucks but we are getting through it. You will too! I think it is the hardest in the very beginning, when you are so overwhelmed with the realization of it all. I still get some pretty strong emotions about it, fear, annoyance at my family for "not getting it", anger that its not fair...all KINDS of emotions. But, I am learning. It is a journey and it is not an easy one. You will get to know your ds better as a result of this though and he will probably end up healtier since you will have to be so deliberate and concerned with everything that he ingests. You've gotten very sound advice so far. This is a great place for support.

[imagine21]

I am 40 yo. and allergic to nuts. First, peanuts are not nuts, they are peas (legumes) If one is allergic to peanuts, they may or may not be allergic to nuts; one has NOTHING to do with the other. The sooner you teach your child to manage their own allergy, the better off they will be. I wore a locket with a pill in it around my neck from the time I was three. Cross contamination is the biggest problem that I have. I am very careful but not fanatical, I eat in restaurants all the time and always have. I am conscious however as to when and where cross contamination can occur and I avoid those foods and situations. I tell all servers in restaurants about my allergy and usually make a "joke" about the fact that they certainly don't want paramedics called. Normally, this scares them sufficiently to be careful when preparing my food. I have had reactions on average 1 time a year. Also, in an emergency, a Dr. Pepper, although completely vile, will stave off my anaphalaxis long enough for me to get to an ER. I don't know why but it works.