Very new to this - help please

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So we are fairly certain that my 3yo son has a PA. We are going to an alergist tomorrow - but were told that they cant do tests since he had benedryl yesterday. I wanted to start the process though. We got a scrip for epi pens and have those on hand. What do I do now? He is sleeping? What do I give him for dinner? I have no idea how reactive he is.....or what products are not good. I do have a friend whose son is allergic to many items and have always been sympathetic and paid close attn to how they have to manage their lives...but now it's my turn and I feel clueless. My son is in a preschool...not peanut free. ???

When didn't give him any pnut until he was 3 and then his ped told me to try it a little a day for 5 days and watch him. Well day one he didn't like it...and said "i can't get it out of my mouth" and I never gave him anymore figuring that he didn't like it so why push it. Well my husband took him to Costco - they had a snack with PB on it and ended up in the ER with a swollen face, hives, blisters, etc and Benedryl. That was yesterday. Now I have epi pens and both the ped and pharmacists where less than explanitory. So tomorrow we go to an alergist. I guess he is going to have bananas for dinner! LOL

any help or ideas would be appreciated! I have read a few threads here....and noticed that someone with PA also reacted to ranch dressing and I think my son reacted to that also once. Oh well...I love PB! Ugh...just reading these threads has got me sad, concerned, all those things.... ok I'll stop. Thanks for reading.

On Jan 22, 2007

I am sorry to hear this happened to you. I freaked out when I found out about my son in August (he is 2). It definitely gets easier. We do go out to eat and I cook almost everything I used to. Just check labels carefully, there is food out there. My son loves Sunbutter (made from sunflower seed). It tastes almost like peanut butter. You'll have your questions asnwered when you see the allergist.

Good Luck!

------------------ Jodi

On Jan 22, 2007

I would go to the FAAN website [url="http://www.foodallergy.org"]www.foodallergy.org[/url] and purchase the video "It Only Takes One Bite" and an epipen trainer (a fake one to practice with). That will really increase your confidence in using the epipen. Read all labels of everything you feed him. I would not do restaurants at first until you have got your meals at home figured out. When you do go to restaurants, bring food for him, in case you are not sure of the safety of the restaurant food.

On Jan 22, 2007

We are new to this, too (it sounds like you may have seen that thread I started about feeling overwhelmed). I'm finding a lot of support and helpful information here, including companies whose labeling people trust (e.g., General Mills) and ideas for how to manage this in all kinds of situations. I hope you receive clear answers from the allergist, and I certainly empathize with you (also having discovered my son's allergy at age 3 after having avoided peanuts his first three years).

On Jan 22, 2007

thank you all for your responses...yes cam I saw your thread and it along with the others has me a bit scared! I also read the "what are they thinking" thread... I have seen issues like that before I even knew about my son...we had a big family arguement about it...I can't believe that some people wont give up pnuts on a plane when it could kill someone!??! Arg...

I am wondering how helpful the tests will be? In reading the threads it seeems that there are different levels of PA. Some of the threads here are heartbreaking.

On Jan 22, 2007

FAAN has a lot of helpful information. Click on a lot of the links there and read up on allergies. FAAN's website is [url="http://www.foodallergy.org"]www.foodallergy.org[/url]

I think this link should take you directly to their list of things to avoid... [url="http://www.foodallergy.org/downloads/HTRL.pdf"]http://www.foodallergy.org/downloads/HTRL.pdf[/url]

I hope that helps.

I know it's overwhelming right now. Just read as much as you can and when you have questions, please don't hesitate to ask.

On Jan 22, 2007

I wanted to add that my son and I go to a parent-child class, and we were enrolled in the class when we found out about the PA. I panicked because we had class that week, and it is a program where parents take turns bringing the snack. I went to the grocery store at midnight and read labels on standard crackers and typed up a list of safe snacks and e-mailed it to the program director that night, and she said we could tell parents only to bring in snacks from that list (and I always get to verify it before it is handed out). I would be willing to e-mail this list to you if you want (although I have to say that at the time I did not realize that we should also go the extra step of calling manufacturers, so I am still working on that and would need to give that caveat with the list). You could even do a few searches on this board to find snacks people think are safe.

On Jan 22, 2007

Hi Sarah,

So sorry this happened to you, I know the feeling, believe me. We all know the feeling. Very overwhelming, but it can be managed. A lot of things are going to change, but having a site like this will help so much. The first thing I want to say is about how he didn't react with the first bite. A lot of children don't necessarily react with the first bite of the allergen, but every subsequent exposure makes it worse. I have 3 children with PA(peanut allergy) and TNA(tree nut allergy), and it is hard, but we manage. Found out about my son at 15 months, he is now 11 yrs. His reaction did come with the first bite. He satellites when tested, there is not measurement for his PA test.

Anyway, I hope you have a good allergist, one that throughly understands food allergies, they don't all do. I have had one tell me --Oh, don't worry, he can eat food with traces, and I wouldn't worry about carrying an epi. He will be fine"--IDIOT!!!!!That is why we drive 3 hours to go to his old allergist, we had moved and there is not one allergist here I trust. I am telling you this so you can really listen to you Dr.

Welcome!!And please feel free to ask any questions you want and you may email me any time. Take Care

------------------ Stacie - Mother to: 11 yr. PA 8 yr. TNA 3 yr. PA&TNA

On Jan 22, 2007

You may suggest to your allergist a blood test. You don't have to have avoided benadryl for that, and with it, you won't be exposing your child to peanut further (like the skin test will). I mean, a skin prick test (SPT) will tell you that you're allergic, but you know that. The blood test will give you a class--a number to work with (not that the number/class is a predictor of reaction).

Welcome to the boards. They're a wealth of information.

On Jan 22, 2007

I am sorry you have had to join us. There is a wealth of info here. I muddled around uninformed the first two years of my son's diagnosis, then when his bloodwork (RAST) numbers nearly quadrupled, I knew I was in this for the long hall, and I found this haven of info.

What you will learn here is that everyone has a different comfort zone. Some of that is based on the child's sensitivity(oral, touch,inhilation), a part of that is the parents knowledge, personality and management of their fears.

For example, not judging or criticizing, just offering an example. I consider myself 'in the middle'. There are two extremes 1) home school, never eat out, don't go out in public much and 2) dont' read all labels, don't query restaurants, eat May Contains. I am not as strict as group 1, and not as lenient as group two.

Having said that...the first mom posting gives her 2yo sunbutter. I am NOT comfortable doing that, b/c my 4 y/o does not yet have the capacity to tell the difference between sunbutter and PB...and I don't want him feeling too comfortable with something that looks and tastes so muchlike PB. When he is older and has been tested for sunflower seeds, I may try it, but not when he can't read and reason. But that mom feeds her child sunbutter, and it is no big deal for her at all...we all handle this differently....and that is OKAY. We are just trying to find a balance.

On Jan 22, 2007

I think we all get overwhelmed at times, I do. Some days I think this is no big deal and other days I want to zip my kids inside a bubble and leave them there. I read, read and read. Every web site I come across(this one is good) FAAN(they have a link on how to read a label, basic, but it helped me. Then new things crop up everyday, things at school, parties, play dates....but I deal with one thing at a time. Everyday I learn somthing new, really...this is an on-going learning experience and this is such a good place to start, welcome!!! I Ivisit several times and day and just read....soak it all in! Good luck at the appt tomorrow, write down ALL your questions, try to get some good starters and the rest you will learn. It's not that bad, really, I deal with more then just peanut, and we get by. Take each day as it comes. HUGS

------------------ Chanda(mother of 4) Sidney-8 (beef and chocolate) Jake-6 (peanut, all tree nuts, eggs) Carson-3 1/2 (milk, soy, egg, beef and pork) Savannah-1 (milk and egg)

On Jan 22, 2007

Thank you all so much...I can tell that this board is great resource already. I have lots more questions but I'll wait until after tomorrow and just go from there. I think will probably be one of those mid spectrum types. Hey...maybe was something else? Thanks again and good night. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

On Jan 23, 2007

Hi SarahB. I'm gale from SCS. I'm glad you found us-you'll learn a lot just by reading old threads. Be sure to visit the safe foods forum to learn what foods people feel are safe (but be sure to contact manufacturers yourself also).

------------------ ============== [b]~Gale~[/b]

On Jan 23, 2007

Keep reading on this site and you will learn more here than anywhere. Your son's reaction sounds very serious, esp for a first reaction (subsequent reactions usually get worse). Some of the stuff will be scary at first -- but the more you educate yourselves, the LESS likely a real life scary event will happen to your DS.

The quickest things to implement: * Stop going to bakeries, eating food from grocery store bakeries (ie, muffins, donuts), and ice cream parlors, and mexican and chinese/any asian foods. Those are the highest risk. *Read labels. *Ask questions when you eat out. * Give the school 2 epipens, children's benadryl, and a "Food Allergy Action Plan" from FAAN's website ([url]http://www.foodallergy.org[/url]) -- take this to the allergist appt and have the dr sign it. Make sure the school can handle it. Ask for a peanut free classroom (important for preschool age especially) or at least peanut free zone.

Hope this helps! It took me a couple years to find this site but I learned more here in a month than I learned the hard way in 2 yrs.

Good luck! You CAN handle this and you WILL be successful! Keep in touch!

On Jan 23, 2007

Ok...so it's confirmed...and I am so upset he scored a 25/50 - on the skin test...

he's in preschool - how can I leave him there tomorrow? They have epi pens there...they are trained...but I dont trust them right now.... Over the summer I was helping at school and in lunch one of the kids came to me these are 3-6 year olds..and she told me that Dave has a PA and was sitting next to Susie who was eating PB sandwhich!??? WHAT??!! How could they not tell me? I also gave milk to all the kids...even the two with milk allergies...there was nothing posted - no one told me...the kids did so that was good. But now it's my son and how can I trust them when that happened? My husband went to talk to them now...but my son is 3 and I know I will learn to live with this..and will have to trust people and trust him...but how can tomorrow? I want letters to parents...I want pnut free! My husband want to "ease them into it"... ??? Take normal mommmy guilt and multiply it by thousands! My son is very smart and mature...but he's 3. What am I supposed to do?

On Jan 23, 2007

thanks twokidsnj...are you from joisey? I grew up there...but I read you post after I just posted....my husband thinks I am going to put my son in a bubble...and that's not true...I just want him to be safe. Or at least have a the best chance to be safe.

On Jan 23, 2007

Quote:

Originally posted by gw_mom3: [b]Hi SarahB. I'm gale from SCS. I'm glad you found us-you'll learn a lot just by reading old threads. Be sure to visit the safe foods forum to learn what foods people feel are safe (but be sure to contact manufacturers yourself also).

[/b]

Hi Gale! thank you! I miss SCS right about now. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

On Jan 23, 2007

If possible keep him home for a few days or a week until you get your bearings! Take vacation or sick days from work to give yourself time to draft an emergency plan, conferencing with the teachers, head of school, and nurse (if there is one). You might get some reassurance by finding out who the first responder will be, how long the response time will be in an emergency, and what the procedure is in case of a reaction. It was helpful to me to talk to the firemen that were likely to respond to the school in case of an emergency. Draft a letter to the school requesting the accommodations you need and a letter for parents. You can provide info from FAAN as well. At your conference with teachers and head of school, be sure to tell them about your experiences and ask them what they will do to be sure those mistakes/oversites don't happen anymore - Then you will find it helpful to talk to the teacher daily about how things are going....did anyone accidentally bring in peanutty foods and how was it handled and how did your son deal with it. Ask daily if anything different is planned. Is anyone bringing in treats for a birthday or anything...are they doing anything outside the classroom or going to other rooms...are those other rooms peanut free or carefully cleaned before hand.

Be sure to check the soap used at the school free of peanut/nut oils? Talk to the mothers, baby sitters, dads as much as you can as opportunity allows to educate them.

Our preschool provided snacks. They were willing to let me double check labels and they eliminated anything that I was not comfortable with, but it took a while for them to get into a pattern of safe snack purchases...so I was glad I was able to double check the snacks.

My husband took a while to understand the severity and how careful we had to be. I took control of the situation totally, initially and still do with respect to the schools and any trips we take.

My feeling is that if you "ease" the school into the individual health plan that you require for your child's safety, they will not take it seriously. If you were just diagnosed and things have to change, you will probably get a better and more consistent response if you keep your son out of school until the school has put into place the accommodations that you need. The school will see that you mean what you say and will recognize that it is a serious situation.

The fact that there is such a spectrum of comfort levels in how we all manage our lives and protect our children may be good for us, but it is quite confusing for the schools. One parent is comfortable with peanut butter as long as there is a dedicated peanut free table, another parent requires that there are no peanut items or may contains brought into the classroom or lunch area at all. Some parents are ok with may contain items but not with items that clearly contain peanuts.

Regardless of the reasons for these differences, the schools are programmed to find the simplest fix that impacts the least number of people. This is particularly common in public schools. Private schools are more likely to go out on a limb even if it is controversial. At least that has been my experience.

I tend to have a tight comfort zone because my son is sensitive to airborne, contact, and ingestion exposure to peanuts. When the schools hear that he is airborne sensitive they readily agree to keep the peanut/nut products out of the classroom. There are many preschools that ban peanuts regardless of the type of sensitivity since the younger kids tend to put their hands in their mouths so frequently.

Many schools think that if the child is not airborne sensitive then an appropriate accommodation is a dedicated peanut free table. Unfortunately many of these places do not enforce a hand washing rule. If that is what you are up against, you might consider finding a preschool that has a policy in place that you are comfortable with rather than dealing with the additional stress of feeling that there is a high likelihood chance that your child will be exposed to residue.

Be sure your child knows how to recognize peanuts, peanut butter, and foods that are likely to contain peanuts. Your child is the best advocate for himself and will be able to regularly ask teachers, etc. if a food is safe. This provides the ever necessary reminder that people need when they don't live with the allergy.

I believe there are some letters that parents have written to schools on the discussion board, probably under Schools. My son is in 3rd grade now and I think that I deleted his preschool letters. However, if you can't find one and need one to modify or to help you organize your thoughts post a request and someone will send you one. I will look for a hard copy of mine that may be around still.

Good luck. Take a deep breath and don't be afraid to tell the school what you need in order to feel that your child will be safe. Do what you can to help them accomplish this to your satisfaction. If the teacher is understanding - you are already half way there.

On Jan 23, 2007

Quote:

Originally posted by Sarahb: [b]thanks twokidsnj...are you from joisey? I grew up there...but I read you post after I just posted....my husband thinks I am going to put my son in a bubble...and that's not true...I just want him to be safe. Or at least have a the best chance to be safe. [/b]

Sarahb,

You might want to consider buying this book for both you and your husband to read.

[url="http://www.amazon.com/Caring-Your-Child-Severe-Allergies/dp/047134785X/ref=pd_sxp_grid_i_0_0/102-6244858-3377754"]http://www.amazon.com/Caring-Your-Child-...6244858-3377754[/url]

It does a good job of discussing the emotional aspects and presents the concept of balancing [i]safety[/i] and [i]social normalcy[/i]. It's a pretty quick read...

On Jan 23, 2007

Falcon...thanks..very sound advice I really appreciate the time you took to share that with me.

My husband are both self employeed - so we can take off and will do that for at least tomorrow to get a handle on this. The hard part is getting a handle on it with a crazy 3 year old running around! LOL. I am going to empty the fridge/freezer/pantry and start calling manufacturs - mark safe foods - donate unsafe unopened foods - and start a list of nut free schools in the area and a list of what needs to happen at his current school to make me comfortable. My husband had a good meeting with them today but he agreed that staying home tomorrow will help to send the message that we are taking this very seriously. He thinks my hair is on fire and I think he is asleep at the wheel...sounds typical. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img] Actually we are both very concerned and I think we can find common ground. I would rather be ultra vigilant at first to get a handle on what/where the risks are and then decide what I can tolerate as acceptable. My husband has brought up the point that our son has been in school/daycare since he was 16 wks and has not reacted in school. I don't care - just because it hasn't happened doesn't mean we are safe. We need to take steps to make it as safe as possible - safer than it was yesterday.

If anyone reading this can't guess...I work for myself because I can't spell! forgive me.

On Jan 24, 2007

My husband and I also struggled with the fact that my son didn't react until we gave him something that obviously had peanuts in it until 3. For 3 years he went to birthday parties eating whatever was there, we let grandparents take him to any restaurant they wanted, etc., etc. We wondered if we could just go back to what we had been doing and avoid the obvious stuff since we didn't have any problems before that, and how could things change overnight? I'll share what our doctor told us--and if anyone can shed any light or has been told anything different, please share. Our allergist said that he believes that several months ago our son wasn't allergic. He said people can have the antibodies for a while before they start reacting. He said that once they react--once the allergy presents itself--it's like a switch has been flipped. That's how we're treating it; it's like a different world for us. I certainly don't want to be the voice of pessimism, but just want to share what was told to us. It takes a lot of work, but we are still doing the things we want to do and my son is doing well with this. This board has been a treasure of information and support.

On Jan 24, 2007

Peanut comfort zones are different for different people. Many fast food restaurants have online charts to help you assess the risk for allergens.

I know you will research foods in your own time, but I can tell you're a little overwhelmed. Many McDonald's foods are in our family's comfort zone for peanut allergy (not necessarily nutrition)...including cheeseburgers and chicken nuggets.

When eating out at McDonald's or elsewhere, dont eat ice cream, shakes, Blizzards or cookies unless you have researched them and know they are safe. Most are not. The chocolate cookies at McDonald's are a "may contain peanut dust".

If your husband thinks you are overreacting, search for Melissa's posts about the Duke research project...and see that some kids in the study are reacting to 6 - 12 mg of peanut protein. An average single peanut contains 150-300 mg of protein. Let that sink in.

Take a couple of days to soak up information; then stay up to date by checking just the daily posts (there's a small link to the dailies on the main BB page).

It's easy to get overwhelmed and start feeling panicky. Your son doesn't need that, but he will benefit from both you and your husband being very educated and protective. My husband started out on the fence and now does presentations at my son's school at the beginning of the year.

You're right to assess the safety of your school. Like most of the folks here, I do not allow other people to feed my kids. Not their schoolteachers and Sunday School teachers, especially. You can look for my post in Introductions if you want to read about my son's preschool experience.

Take a break from reading when it gets scary. Focus on being a family. After a while, you'll adjust and have a more normal feeling about life again.

This website is a great place to learn...and it's also helpful for keeping your sanity. Here, you're "normal," you can talk about things, and your day to day concerns are well understood and supported.

Take care!

April

On Jan 24, 2007

Hi Sarah I am sorry that you had to join us. I remember that feeling of being totally overwhelmed. You got alot of great responses here. that book that was suggested is a great book. After reading that book my dh saw things in a different light. Definilty read it and give it to your husband to read. Where did you grow uo in NJ? I am in NJ

On Jan 24, 2007

Quote:

Originally posted by cam: [b] Our allergist said ...that once they react--once the allergy presents itself--it's like a switch has been flipped. [/b]

BINGO! Even in grown-ups!

Take care, Daisy

On Jan 24, 2007

My dad's allergist likens this to the 'drop in the bucket' theory. Once the bucket is full ....

On Jan 24, 2007

ah....I grew up in Bergen County - Woodcliff Lake..exit 168! I now live outside of Seattle. I ordered the It Only Takes One Bite and the book linked in the thread. I am feeling a bit better in that I can see that there are lots of safe food options - some companies with good labeling, and DH is working on the school to go nut free. He is more diplomatic than I am. DS stayed home today and will again tomorrow. We are all going shopping for some new food, snacks, bread etc...tomorrow morning - [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img] BTW there is a thread about death...I told ds that this could happen...like Nemo's mom and Charlotte (Web) who knows if he gets it...but I did apprecaite the sentiment not to desensitize him.

On Jan 25, 2007

I'd also recommend the book "The Parent's Guide to Food allergies" by Marianne S. Barber. It helped me get a handle on the whole picture: reactions, foods and situations to watch out for, lots of aspects. It covers many food allergies, but there's a chapter dedicated to peanut allergies and the author's son has PA, so she knows what she's talking about.

On Jan 25, 2007

[Whoops...I posted this and then remembered you're dealing with a preschool, not a public elementary school...at any rate, still might be useful to know.]

Tell your husband that all schools can now purchase Sunbutter as a government commodity, subsidized at a cost that is equivalent to peanut butter. The FDA added it to the commodity list last year. So there are no valid excuses about peanut butter being cheaper! : )

[Some schools use peanut butter sandwiches as the option for students who are behind on paying for their lunches.]

You might want to have him order a small jar from their website, make the Sunbutter Special K bars & take some to the school principle and kitchen nutritionist. They're pretty good!

Good luck! - April

[This message has been edited by April in KC (edited January 25, 2007).]

[This message has been edited by April in KC (edited January 25, 2007).]

On Jan 25, 2007

you will want to check out the school section on this board on how to deal with you pre school. i am having problem placing my son in pre school for next year. (all ready having issues with the school nurse..) you can get a 504 while you child is in pre school if the school is federally funded look under 104.31 section d and 104.38 it pretty much explaines that they cant deny a 504 to pre schoolers. ... the school section on this site is great . full of info about how to deal with the school. best of luck to you and keep your head on your shoulders. it gets easier... and you will make alot of friends here. we all know what you are dealing with.

so welcome!!!!!

erin

son allergic to peanuts, dairy, strawberries. blueberries and my mother in laws dog.

On Jan 25, 2007

Welcome....I'm kinda new also. I think the hardest thing for me dealing with my ds pa is knowing if he's having a pa reaction or just itchy from something else. He has had to battle skin allergies his whole life. (6 years) We found out about his food allergies at 2 (egg, soy, peanut) Now, he just has peanut) When we first learned of the food allegies, we just worried about his severe ezcema and the itching attacks he would get. It wasn't until this Summer when he had a bite of food with unknown crushed peanuts in it did we realize how severe this was. (He ended up in the ER. stomach, hives, facial swelling) Since then, everyday is about keeping him safe. I take it day by day. When I found this site, I thought it was great to find people dealing with the same issues. I do get overwhelmed at times, and it isn't so much finding safe food it is more about daily life stuff like school parties, going to friends houses, playing with kids outside that are eating peanut/butter stuff. etc.

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