Monday, August 13, 2007

How we got here...

My husband and I have a little girl named Bella (Isabella). She'll be 3 in October. We found out she was allergic to peanuts the hard way when she was 18 months old - a reaction from eating. I suppose we were lucky in that she didn't go into anaphylaxis. She had a tiny bit of toast with peanut butter on it. Within minutes her eyes were swollen and her face covered in hives, nose running. We called the doctor immediately who told us to give her Benadryl and get her in to the office right away. Luckily it did the trick and it didn't go beyond that - her hives subsided and we made our way into the office. In hindsight, I was pretty blase about it. I mean, I even took the time to shower and put makeup on before I left for the doctor's office. I can't believe I didn't rush right in! What an idiot I was!

Anyhoo, to make a long story short, a few weeks later we had a skin prick test that showed positive for peanuts (the biggest welt), along with almonds, walnuts, and cashews. Fast forward to May 2007 for our second skin test. She showed negative for all tree nuts (yay) along with sunflower and sesame. But we're still dealing with the peanut allergy. Is it weird that eliminating the tree nut allergy was a relief to me? I felt as if there was some hope of her body chemistry changing to accept peanuts in the future too...

Even after a year (plus), we are still educatiing our families about what they can and can't do around our sweet little girl. No, you can't eat them around her; no she can't hold them; no you can't hug or kiss her if you've eaten them within the last few hours; no really you can't; yes, i DO need to ask the restaurant about their allergy awareness - i do need to ask what's in each dish (you know, peanut butter can be in everything from spring rolls to enchiladas!).

I'm sure I am seen as overbearing at times, but when you have someone with a peanut allergy who can't discern for themselves what they can and cannot eat and I have to be their voice (along with her father), then yes, yes we are overbearing. it's a struggle, but one we live with day to day and one that we are overcoming day by day.

We try to live as 'normal' a life as possible. I don't want to be an alarmist, but I can't downplay how important this is either. This proves to be difficult when we encounter people who think we are exaggerating her allergy or think that she'll just be a 'little itchy' if she has nuts. The best is when we hear people tell us 'she'll grow out of it'. I just smile and say, "we hope so, but for now you need to know how to use an epi-pen."

I try to keep up with the latest research, and I am confident that before Bella is a teenager, there will be some sort of preventative treatment. I have to be. It's one of the only things that keeps me optimistic about seeing my daughter through high school and college.

How do you cope? I hope that other moms (and dads too) find me - I know I'll be looking for all of you.

21 comments:

ChupieandJ'smama (Janeen) said...

Welcome to the world of blogging and welcome to "allergy blogging parents". There are more of us every day (unfortunately, depending on how you're looking at it)! I hope it's ok if I add you to my side bar for others to find.

Gab said...

Of course you can - I'll do the same! Glad to find another allergy mom out there :)

Allergic Girl® said...

welcome gabs!
great to have another voice out there about allergies! and thanks for adding me to your site, i'd be happy to do the same.
best
allergic girl

Bellevelma said...

Gabs,

Hello. I saw your post over at the peanutallergy board. I read there sometimes but don't post. Just wanted to let you know my son has food allergies and I have a blog. It's mostly NOT about his food allergies, although I do have one post about a reaction he had. You can read it here: http://runningwithbooks.com/the-unfunny-files/

Take care,
bellevelma

Anonymous said...

I have two daughters with peanut and tree nut allergies. I only have two children! Imagine what I'm going through. My 10 year old's blood work for 5 years has been 100 percent allergic to PEANUT. She is also allergic to other tree nuts, seeds, soybean and chickpea. My 7 year old was just diagnosed two weeks ago with tree nuts, sesame seeds, and wheat. Oh yes I am freaking out! Let's talk so I can cope a little better.

Alexis Ahrens said...

Gabrielle, this blog is such a great site for information and support! Kudos to you! I'm so glad you found me and the story of my 21-month-old son's diagnosis via emergency room run on my blog, http://shinebrightly.wordpress.com.

Yes, thinking about the future when I'm not around him every second of the day is really the scary part - aside from thinking of having to use the Epi-pen. It's so helpful to connect with other moms who are experiencing the same thing. Thanks! Alexis

Unknown said...

Wow, I can absolutely relate to everything that you said. My daughter is going for her food challenge to peanuts in September (they are so behind that she can't be tested for almost 3 months!) I am so grateful and excited that her RAST test was negative, but I know that 40% of people with negative RAST scores and a history of reactions still have reactions. I actually print your entries because I have said all of the things that you have said and everyone thinks that I am just a "crazy allergy mom." I don't ask them to change their lives, but I would really appreciate it if they wouldn't risk my child's life. I really love the question, "Can't I just scrape the peanut butter off and give her the bread?" Oh, please! People really don't get it, so it is so nice to know that I am not alone. Thanks!

NA Senora

Anonymous said...

Hi

I dont know whether any one on this site might be able to help

I am a mum of a 4 and a half year old who was diagnosed with egg, milk and wheat allergy in 2006 when she was 2. Unfortunately they never tested for nuts but she has recently had a reaction by being just close to a bowl of nuts. At the moment she is reacting to something in bed that is causing her to swell during the night.
I am sitting here distraught and I have decided to change consultants as I have been unhappy with mine and need some proper answers. My daughter has a RAST test for egg as 10, milk 6 and wheat 2. Can anyone help with these results and explain what they mean as I have now been told that there is confusion with her results.
Unfortunately my daughter seems to react by just being close to products and not just eating them

Hoping someone might be able to give advice

Sarah

Anonymous said...

We are a vegetarian husband and wife who had a little baby boy. At the age of about 9 months old, I gave him a very small bite of cream of wheat with a splash of soy milk. Within the next 30 min. of nursing, I uncovered him, looked down and he was covered with hives/welts. I called a neighbor who was a nurse and raised 2 kids with severe nut allergies. I had and administered Benedryl and they subsided. Took him in for testing (RASP and total blood work). Peditrician called the next morning with diagnosis of severe soy, egg and tree nut allergies and even more severe (high 5) peanut. Our lives changed. Try finding new vegetarian mel options with no soy, egg or nut of any kind is more difficult that I could have imagined. Dealing with family is still challenging. Although we live hours away and they say they see it as "serious" and understand....at his 2 year old party, those same people brought deviled eggs, potato salad with mayo dressing, etc. !! Oh, and celebrate Halloween, they say, just let him exchange the stuff he collects for stuff he can have once he gets home. Why would we want im to handle it, or even bring it all into our house? No one truly understands except other parents dealing with it. We feel alone. No area support groups, no truly educated allergists (ours couldn't tell us if soy lecithin was would be considered harmful). Anyway....enough of my story, but there it is in the proverbial nutshell. We're thankful for the internet and finding out early in his life....even though I'm still wondering what to make for a new, innovative meal this evening.

Brittany said...

Reading your story - brought me to tears. Ah, I can understand completely.
Let me back up, I have a 15 month old son who has just recently been diagnosed with milk, egg and PEANUT!! Shew! Talk about overload - I can hardly comprehend it myself. It has been a TOTAL lifestyle change for us and I am just now learning the "ins and outs" of living with food allergies.
I am so happy to find other moms struggling - it is so encouraging.

Thank you for your story - let's keep in touch!! :-)

Anonymous said...

Theory: Vaccinations are the primary cause of food allergies. Infant formula, infant vitamins, and antibiotics that contain peanut products directly or indirectly may be secondary causes.
BACKGROUND: This study began as a "wild idea" that vaccinations or medicine could be causing peanut allergy. It soon turned into a horrible realization. A very small amount of food proteins from many sources are considered inert ingredients that fall under trade secret protection and are not on the vaccine inserts. Various studies have shown that injecting an animal with protein is one method of inducing an allergy. Every study done of food allergy that could be located does not disprove this theory. There was a study done on Indonesian and Thai children that has been frequently quoted as saying that there are no peanut allergies in Thailand or Singapore in spite of the high consumption of peanuts. Evidence was presented that Singapore has a major problem with peanut allergy. The study itself says that many children reacted to peanuts in a skin prick test and that it eliminated a number of children from the study. The "hygiene theory" was examined and found to have no merit. Evidence of a long list of food protein that can be used in vaccine production has been found in various patents on-line. The increased childhood vaccination schedule coincides with the increase in food allergies in industrialized nations. The lower incidence of food allergies in less industrialized nations also coincides with a lower vaccination rate. The lower incidence of food allergies in the Hispanic population of the United States also coincides with a lower vaccination rate. The evidence of food allergy in animals has only been found in vaccinated animals. Evidence of ingredients that can be one of the patented adjuvants with various food oils has been presented. Evidence that "pharmacy grade" peanut oil still contains peanut protein has been presented. Package inserts have been examined and found to have ingredients that do not disclose its actual composition. EVERY SINGLE FOOD ALLERGY THAT I HAVE FOUND, I HAVE ALSO FOUND THAT FOOD LISTED AS AN INGREDIENT IN A VACCINE OR MEDICAL PRODUCT.

Many of these pages were copied from my blog. The blog grew too big and was too hard to follow. The links listed below link to the article in my blog. Use the buttons to the right to go to the article on this website. If you'd like to leave a comment, you can do so on the blog or you can e-mail me by way of the contact page- bfg

1. Vaccines are given to create an immune response from the body. It only makes sense that the body treats anything in the vaccine as an invader that needs to have an antibody created to combat it. That is why we give vaccines. But if the vaccine has a trace of food in it such as egg or peanut, it only makes sense that the vaccine can cause a food allergy.

2. Peanut oil is used in vaccines in adjuvants or as a vaccine carrier. The ingredients of adjuvants or vaccine carriers are not listed individually on the package insert. So the physician would have no way of knowing that there was peanut oil in the vaccine. The ingredients of adjuvants is considered a "trade secret" and has the protection of many governments not to be revealed.

3. Peanut allergy decreases in populations that have decreased percentage of vaccinated children. There are a number of studies that link vaccinations to allergies.

4. Peanut allergy is almost unknown in Israel. The population eats lots of peanuts. Israel produces sesame oil. Israel manufactures its own vaccines. Sesame is a major allergy there. Hypothesis: Sesame oil is used instead of peanut oil in the vaccines used in Israel.

5. Study that is frequently cited saying that Indonesia and Thailand people do not suffer from peanut allergies was erroneous. Many children in the study reacted to peanuts in the skin prick test. The study relied on parents of report food reactions. I found a Thai parent quoted on the Internet saying that her child had a peanut allergy. I also found a physician from Singapore stating that peanut allergy is a major problem there.

6. The “hygiene” theory points out that there is less food allergy in underdeveloped countries. They speculated that the people and environment is less clean so it is the early exposure to bacteria, etc. that protects against allergies. However, children as young as 8 months have been diagnosed with peanut allergy and it is only since 1990 that peanut allergies have become a huge problem. The populations in the underdeveloped countries are also not as compliant with childhood vaccinations which would account for less peanut allergy.

7. The United States and China are major producers of peanut oil and vaccinations. There are many patents for products used in vaccines that contain peanut oil.

8. The secondary causes of peanut allergy are due to young children having a “leaky gut”, immature digestive system. Introducing foods too soon can lead to allergies. Medicines given with traces of peanut protein could lead to an allergy. Also antibiotics kill off good bacteria as well as bad and can lead to an overgrowth of yeast which can cause food allergy type problems. I don’t know if any infant formula in the United States contains peanut oil. One website said it was more of a problem in Europe.

9. Our vaccinated animals are getting food allergies Dogs are allergic to peanuts. Searching the Internet - I found a wild elephant allergic to wheat; the elephant had been immunized. (Wheat germ oil is used as a carrier of vaccines. Wheat protein is used to manufacture vaccines/medicines.)

10. The statistics for allergies is appalling!! The allergy epidemic increased with every new mandate for more childhood immunizations.

11. How pure can we make peanut oil? I assume it is highly refined but it only would take a teeny weeny bit of peanut protein in a vaccine to create a problem. That is, of course, assuming that it is ONLY the peanut protein that causes the allergy. Using my “guessing” math, only 1 shot out of 1680 would need to be contaminated to create a peanut allergy in 1 in 70 people in Great Britain.

12. Vaccine adjuvants/ vaccine carriers contain many other oils/ingredients. These other ingredients could account for allergies to other foods. Fish oil is used. Shellfish can be mixed in with the fish by-products which are used to make fish oil. Wheat germ oil, corn oil, soy oil are used. Milk and eggs are also used in the production of vaccines. I expect that the oils are mixed in the vaccines so that you might get a vaccine with peanut oil and soy oil in it or any number of other oils.

I keep looking but so far, I have been unable to DISPROVE my theory. And perhaps that is because VACCINES ARE A MAJOR CAUSE OF FOOD ALLERGIES!!

Anonymous said...

Keep up the great work on educating others about multiple food allergies. Exploring and finding new and creative ways to manage our children's allergies is so important. People just do not understand that a little peanut or its residue can actually kill someone.

Anonymous said...

I am thankful that my child is alive, with a tree nut allergy reaction at 21. All tests showed very low or negative. One point is, the testing is as yet very imperfect. Know allergy from know exposure and subsequent reactions. Regarding immunizations, I understand certain oils (nut/ect) have been used, but to get the lot codes for the vaccinations would be difficult. In my search I have 2 concerns 1) What if autism is caused by allergic reactions to said oils. allergic response can be deadly and deprive one of oxygen 2) What your pollen allergic family members, as they are finding specific relationships between pollen and food allergies. As such, this could be in part a reason for late age onset of allergic responses. Studies in Europe and Canada are progressing faster than in the US, so watch the Allergic Living Magazine and research out of facilities across the world.

Anonymous said...

Also, in Allergic Living Magazine (Canada) sesame seed allergy is on the rise, common to those with tree nut allergies. Many in US don't even look for it but it is right below our top allergens. Pollen/food allergy associations are know. Specific foods with specific food, tree pollens (birch), weed (mugwort), and grasses. One site lists the cross reactive foods. They have found S sites on the protein of pollen and certain foods to be similar, so they can find reasons for cross reactivity. I have concern that in high pollen season our family is more reactive to specific foods. We need to ask for more studies into the composition of these cross reactors and into education of those with pollen allergies so they can avoid the suspect foods

Anonymous said...

Does anyone know of a peanut free Airline that one could take to Europe?

Anonymous said...

Hi, I'm the mother of a peanut-allergic 4-year-old. I'm also peanut allergic and tree nut allergic. I am 36; I know of another peanut allergic adult, my daughter's allergist, who is 27. I also know of several older adults who have tree nut allergies. It is not only possible but very likely that your daughter will live a long and healthy life. Yes, the risks exist, but you are careful, and the odds are that she will adjust, learn to protect herself and grow up to live a long life. Most food allergic people do! I hope there is a treatment some day too, but if not, I believe we nut allergic people are smart enough to continue taking care of ourselves for the duration.
Lastly, I just want to give you ((hugs)) because you sound so much like I do on my worst days, and I want to tell you it will be okay.
Leslie

Anonymous said...

I have formed many theories after hours of research to try to understand why the increase in food allergies. Two of the most promising include the large amounts of soy that have been introduced into foods in the past twenty years . . . could this have led to an increase in peanut allergies and other food allergies, including soy? Soy and peanut are known to be somewhat cross-reactive.
Even if this isn't the case, I do think that cross-reactivity with pollen is somehow involved. Now, I learned the other day that global warming makes it rain more in wet areas and be drier in dry areas. Track with me now. Trees produce pollen based on how much precipitation falls over the winter. So in wet Northern areas where there is a lot of allergy increase, there has likely been an increase in snow and rain, and therefore an increase in pollen. More pollen means more allergies, allergies earlier, and yes, it could sensitize some individuals for food allergies. Grass and peanut allergy have some cross-reactivity, for example. I believe this is also true of walnut and alder (I have oral allergy syndrome so I've researched this).
If this is the case, the increased allergies are here to stay. My opinion is that food allergic children who also have pollen and other environmental allergies should get shots, i.e. immunotherapy, ASAP. Reducing their reactivity to environmental allergies just may affect the way they react to foods; it will certainly make their lives less miserable.
I am just an allergic researcher, not a doctor, so believe what you will. I'll be interested to find out more, hopefully much more, in the next ten years.

Julie Rogers said...

Hello and thank you for your blog! I just ran into it on my search for a new Epi-pen holder for my 12-year-old son. I’m just reading the first few paragraphs of your “How I got here” section, and it is so close to our experience I could not believe it!

My son was just 14 months old when he had his first and only reaction to peanuts. I knew very little about food allergies back then. I gave him a bite of my peanut butter and jelly sandwich. This is eerily similar to what my son’s reaction was. He wasn’t talking then, so he just broke out in hives, runny eyes and nose, and was acting really uncomfortable. I immediately got on the phone with the pediatric clinic because I thought it was a reaction to the antibiotic we were giving him for an ear infection. I think they advised me to give Benadryl and watch him closely. Fortunately his reaction subsided. If I knew then what I know now, he would have been taken to the ER! We were so blessed that it didn’t turn into anaphylaxis. I can complete relate to how you feel about not noticing at the time the danger of what had happened.

My son had skin prick testing and blood testing. It was especially (not) fun having his blood drawn at 14 months old! He was off the charts and the peanut left a big welt on his back. He was re-tested (skin prick) at around age 3, and the doctor put the peanut allergen on his back and immediately wiped it off. In a matter of seconds he had a large welt on that spot! So the doctor concluded that my son is most likely never going to out grow this allergy. sigh

I just received a call from the nurse in our school district that is assigned to my son’s school. He just started middle school this fall, so this nurse is new for us. She met with him a couple of days ago to get an idea of how he manages his food allergy at school. I’m so proud of him! She said she was very impressed with him and she felt he was one of her more mature students in how he handles his food allergy! She also said he was very confident in his knowledge of his allergy. Yeah! She reminded us that she found the set of Epipens that he carries would expire at the end of December. (How nice of her!) Just this year he is finally in the routine of always carrying his med-kit with him when he leaves the house. Our school district allows kids to self-carry.

Anyway, I will be exploring your blog further and can’t wait to find out more.

Thanks so much,

Julie

Anonymous said...

Hi, I just wanted to say that my 17-month-old daughter and I have been discovering food allergies and sensitivities in ourselves recently, making life rather difficult. I carry Benadryl with me wherever I go and I had to use it once on myself when I realized I had developed a milk allergy and began to have trouble breathing. Benadryl works wonders, but watch out for a rebound effect. After a few hours, when the Benadryl wears off, your body may still be trying to react and you could have another allergic attack, as I did. Plan to re-dose or be at the emergency room for a longer-lasting shot of something.
Anyways... I wanted to hopefully give you some advice. At least it's something we are trying, and if it helps anyone else it would be great to pass this along. We've got a wonderful homeopath in our area, who has helped me out previously with other health issues, so she's got a great track record with us. So we're working with her again now because of our problem with the food allergies and food sensitivities. I'm noticing changes beginning in my daughter and hopefully they will progress. My own problems will hopefully be getting better soon as well. I know I've seen success with other problems of mine in the past. So I just wanted to pass along the suggestion to see if you have a homeopath in your area. Maybe he or she will be just as skilled as mine is.

Anonymous said...

I just found out my son is allergic to peanuts and it's a whole new world for me. I never paid attention to peanut allergies and never realized how many people suffer with this. It's scary but I feel fortunate that I found out and now I am prepared. I always thought in the back of my mind that he may be showing a sign that peanuts were negatively effecting him. But why him?? we have no peanut allergy in the family...I must be imagining it. Well, 2 1/2 weeks ago he took a bite of a Mr. Goodbar. I wasn't home. It was New years eve and I had run out with a friend to pick up food. My kids were with my friends husband. He called frantic that my son fell asleep (sleep or passed out??) and woke up vomiting all over and that I should come home right away. I came home and my son looked fine. One hour later he had hives all over his body. As fast as they appeared, they went away. I just thank God that everything turned out ok. I know now and as long as we are prepared, it can't hurt our kids. We are fortunate and we need to learn from one another on how to deal with this life changing allergy. I wish everyone the best of luck with the challanges we face ahead. Hopefully, one day, science could help our kids get rid of this horrible allergy.

Michelle said...

I can't find my comment...my 14 month old was just diagnosed with a peanut allergy, and I didn't know so many of the things that were listed in this post...the not eating them and then being around him for instance.

I plan on spending time catching up with your posts.