Posts Tagged ‘food allergies

14
May
12

Food Allergy Awareness Week

By punkymama 1 Comment
Categories: Punky Mama
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It is that time of year again, food allergy awareness week.

Here are a few facts from the Food Allergy and Anphylaxis Network website that I want to share with you.

  • Food allergy is a growing public health concern. As many as 15 million people have food allergies.
  • Boys appear to develop food allergies more than girls.
  • Food allergies may be a trigger for or associated with other allergic conditions, such as atopic dermatitis9 and eosinophilic gastrointestinal diseases.
  •  Although childhood allergies to milk, egg, wheat, and soy, generally resolve in childhood, they appear to be resolving more slowly than in previous decades, with many children still allergic beyond age 5 years. Allergies to peanuts, tree nuts, fish, or shellfish are generally lifelong allergies.

I read these points and I nod my head.  I am the parent of the boy who is over five whose severe allergies are not resolving.  Nothing like being a statistic. A hot button issue this year is for schools to have epi pens in case of emergencies after the death of seven year old Amarria Johnson.  Her school did not have her epi-pen but had epi pens prescribed for other kids.  The school nurse and administration refused to use an epi pens that were prescribed to other kids on Amarria.  Her death was senseless one and having an epi pen for such emergencies would have saved her young life and other kids lives in the future.  School districts nationwide are changing their policies and are including epi pens along with bandaids in a schools nurses office.  Hopefully all schools will have this life saving drug soon.

Tonight my husband was home as a rare Monday treat and we were able to have dinner as a family.  I said to Aaron, it’s food allergy awareness week.  I asked him how he wanted to honor the week since he is the person with the food allergies.  He told me he wanted me to come to school and talk about keeping food allergic kids safe.  I hunted around the FAAN website and found a short presentation about food allergies for kids.  They even had a coloring sheet.  I guess I am off to  email the teacher.

That is how the family of the food allergic kid celebrate food allergy awareness week.  How can you all keep a food allergic person safer this week and always?

10
Apr
12

Oh well, see you in two years.

By punkymama 2 Comments
Categories: Punky Mama
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The egg challenge failed. Aaron thankfully is fine.  Aaron lives a great life with his challenges but when they start whispering in our ears that it might be changing it is hard not to think about the possibilities.  Place on that a wait of eighteen months.  I have to admit sometimes over the last eighteen months, when I woke up in the middle of the night, I let myself dream a little here and there. Bad idea.

They gave him a tiny bit of egg powder every 20 minutes. This was supposed to last till 1pm, we made it till 9:30am, three exposures.  By the third try he started getting very sleepy and down.  Suddenly, because I have lived with Aaron for 6.5 years, I knew he was going to vomit.  He vomited and vomited.  They checked his blood pressure and it was down a bit.  The doctor  then looked at me and said if he threw up again and if he did not start improving they were going to have to use the epi pen and move him to the emergency room.  Luckily, he stopped vomiting then and his blood pressure normalized.  He started getting some color and talking again slowly.  It was almost as scary as when he ate peanuts when he was sixteen months old except it was in a controlled setting.

Egg was the allergen they expected to have the least reaction in Aaron.  The rest of the list are worse and they expect more severe reactions.  My thought is if  I continue to be hyper vigilant helicopter pain in the ass Mom and he should be fine.  If he is not fine, I keep an epi-pen close by at all times and know the closest hospitals. The doctor told me that they probably won’t consider another food challenge for about two more years because of the “significant” reaction that occurred so early on in the challenge.  I should see the doctor to follow up on his asthma in six months.

When we got home we indulged Aaron.  My husband who is ever diligent with his work phone, put it in another room, and the three of us played Yahtzee.  Afterward my husband had some work to do, and Aaron and I sat and watched a construction site on the next block for over an hour and we walked to get Ryan at school picking up the trash on the way like old times.  I immediately went to see the nurse because Aaron has a field trip tomorrow.  I got his Epi-Pen and made sure his teacher, who has been trained, had it in her possession because it is one of the only trips I am not going on this year.  I am going to cross my fingers and hope for the best like I do everyday he is not with me.   Life marches on, but for tonight I have to feel a bit sad and scared.

09
Apr
12

Tomorrow is the day

By punkymama Leave a Comment
Categories: Punky Mama
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I think I have been researching too much about Ryan lately.  My google ads are starting to show up with behavioral treatment centers for teenagers.  I want to shake my fist at the screen and scream, this is what I am trying to prevent you assholes!

I digress

Tomorrow is our egg challenge.  It is kind of exciting.  It will be the fist time Aaron has ever eaten egg.  The first time, and he is closing in on seven.  I expect him to hate the taste, like he does all other foods.  I am trying to not get too excited because he has a 50 – 50 shot of not being allergic, meaning he has an equal chance of being allergic.  Unlike his other allergies, he actually has a chance of eating this food in the near future. I find that so exciting.

Aaron is scared.  He is afraid he will have a reaction, get sick, or have to be epi-penned.  We have been reassuring him that he will be fine. My husband took off work so both of us will be there to hold his hand and be with him.  I keep telling him that he will be in the hospital surrounded by people trained to take good care of him.

I was thinking of live tweeting the challenge.  We will be getting egg every twenty minutes in incremental doses.  We have to get to the hospital at 7:30 am.  If you don’t have twitter and are interested in what is happening check out the front page of blog.  My twitter stream is posted there.

See you all on the other side.

 

30
Jan
12

It’s bah bah bah allergy testing time

By punkymama 3 Comments
Categories: Punky Mama
Tags: , ,

We can’t set foot into CHOP and not have it be an adventure.  This morning was Aaron’s yearly allergy testing, asthma check-up, hey I need a letter of medical need for medical assistance appointment.  Aaron is supposed to have a food challenge for egg in April.  I had concerns because since we have never had true winter here in Philly Aaron has not gotten his winter reprieve from asthma.  He has had the worst winter and just last week woke up coughing till he threw up twice in the middle of the night.  Of course now he also has a cold and runny nose on top of the asthma.

The doctor started by quizzing Aaron on what food he needs to avoid, if he had cats and dogs, and if anyone in the house smoked. She was impressed how he could rattle off his allergies and could advocate for himself when it came to foods.  He answered her dog and cat question with, we don’t have anything furry, I’m allergic, frowny face.  Then he had his asthma test.  They thought his airways were in good enough shape for him to have his food allergy skin testing.

Aaron’s skin testing did not go well.  Since he had a pretty severe reaction to milk earlier this year, they skipped skin testing that.  They then tested egg, peanut, beef, and pork.  The reaction to egg was a quarter of what it was last year.  The rest of his reactions were double or more what they were last year.  Yes, more, meaning worse.  Poor Aaron was complaining his arm felt on fire and within ten minutes he was having an asthma attack and throwing up just from having his allergens on his arm.  They gave him some benadryl and the reaction calmed down but that was really scary for a minute. If he reacts to his allergens like this on his arm what would happen if he ingested anything with an allergen?   After the visit they also took his blood to do RAST testing.  I am interested to see those results.

We have to get Aaron’s asthma under control to have the egg food challenge.  Starting today for a month I am to give him Flovent inhaler,two puffs, twice a day for a month.  Then in March go to one puff twice a day.  We go back to the allergist in March to see if the asthma is under control enough to do the egg challenge.  If it is not we will have to delay the challenge till it is controlled enough.

It sucks.  His allergies are becoming scarier and I have to remember his epi pen at ALL times.  I usually carry if he is going to eat or we go far from home, but sometimes if we are dashing out I don’t bring it.  After today and seeing how sick he got from skin contact with his allergens that pen will be with us ALWAYS.

22
Jan
12

Waiting Waiting Waiting

By punkymama 2 Comments
Categories: Punky Mama
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It’s a big week this week.  Finally, we have our last TSS meeting on Friday.  I really didn’t want the meeting to be on a Friday but, of course the universe threw it’s middle finger up at me and said, too bad sleep is for the weak.  I am going into this meeting armed to the teeth with the final few pieces of paper that I thought might help.  Ryan’s teacher wrote a letter explaining how TSS services will help Ryan in the classroom.  Around Christmas his first grade teacher asked me how our quest for TSS services was going.  I told her the whole sordid tale.  She is an amazing person, and she offered to write a letter saying Ryan has been in need of TSS services for two years.  I will go armed with these two letters and Ryan’s latest behavior reports which have been less than stellar.  Before Christmas his behavior had vastly improved but since returning from Christmas break, Ryan has not had one green good behavior day.

By the end of the week we should be more sure about the date on an appointment for Ryan with the developmental pediatricians at CHOP for the suspected PDD diagnosis.  Last time I called them they reassured me that we would be hearing soon, so I went back to doing what I do so well, wait. They told me that is I did not hear from them this week, I should call.

We also were told this week by the school district of Philadelphia that there will be no summer school this year.  Summer school in July went a long way to help Ryan with his reading.  I felt so let down by the school district again and plan to meet with part of Ryan’s team who is a resource specialist about academic based camps that may spring up in the wake of summer school being canceled.   I have to find something because at this point Ryan, who started first grade with a two year reading deficit,  is only one month behind.  A long summer without help in reading will really throw him behind.  Then again, at this point I am used to the School District of Philadelphia throwing us under the bus.  Well, at least next year they can’t throw us under the bus because there is not going to be any bus service in the city.

To finish off the story of waiting.  Aaron was told in November 2010 that he may be outgrowing his egg allergy.  Yes, that was 14 months ago.  Well, as of now his appointment is a mere 84 days away.  Being able to consume egg will really change the food options in my house.

For now, I am trying to remain patient.

04
Aug
10

Banning Peanuts From Airlines

By punkymama 4 Comments
Categories: Punky Mama
Tags: ,

Having a peanut allergic kid is frightening. The world is wrought with landmines in places you would never imagine. Airplanes.  I could see my child coming into contact with peanut oil on a handle of the bathroom or the seat arm rest.  I then see him watching a movie sleepily chewing on his fingers as he does, a hold over from his little guy days.  This  could result in an  anaphylatic reaction at 30,000 feet.  Sure, I hear people say, epi-pen him.  I could do that and it would buy us 20 minutes till we could get him to a hospital.  On a plane that would be impossible and he may die before we could get him help.

The cause of anaphylaxis is near to my heart.  This blog was born the day Aaron ate peanuts and almost died.

This is a petition to ban peanuts from airplanes.

Think about signing it.  For more information watch this five minute video.  You will see what anaplaxis can look like and why peanuts need to be banned from planes in a more in depth way.

Thanks.

10
Jul
10

Peaches and Cream

By punkymama 2 Comments
Categories: Punky Mama
Tags: ,

I love that my best friend from high school’s father reads my blog.  Being the child of older parents he was young, hip, and liberal compared to my high school self’s almost 60 year old parents. He was the single father raising two daughters alone at a time when that was rare.   When I was 17 years old and was trying to have sex and stay childfree he would allow his daughter to hold my birth control pills.  He let me keep them at his house when my parents found mine and freaked out.  They had not been teenagers since the 1940′s and had no clue what to do with a kid in the 1980′s.  I am so glad A is back in my life via FB and he is an avid read of my blog.  I have grown up to mirror many of his beliefs and I love we are now friends.

He left the following message on FB in response to my last post:

It is so great to know someone who can spend so much time with her children, and seem to enjoy all of it. And, you are a great writer, too.

Happy Birthday Aaron, and be sure to appreciate your mom…

Love ya,

A

I laughed out loud.  I kept thinking where was he when I wrote this, this, and this.  This is a quick sampling of so many posts where I was over come with anguish of having two active boys, so close in age,  with special needs.  I have to admit six has been an amazing year for Ryan.  He has been forced by his issues to have a maturity his friends do not have. He knows there are meds that can help him but he insists he does not want them.  He knows they have possible side effects but he chooses to learn another way. I am so proud to be riding this utopian wave with the boys and their needs but I have to be ever villigent for the other shoe to drop.  This is only the first round.  ADHD and Food Allergies 0 – Us 1.

13
May
10

Food Allergy Awareness Week Day 4: The New Study.

By punkymama 2 Comments
Categories: Punky Mama
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Man, I really wish we were one of the 50% of allergy sufferers that have just an intolerance. If projectile vomit and anaphlaxis are intolerances then great. Yeah, I am a little bitter about this.  I am not sure what to make from this study. I am happy for the people who find out that they don’t have a true allergy but news like this, in my opinion, reduces the seriousness of true food allergies in the eyes of the world.  The world that I depend on to help keep my son healthy and alive.

This study just reminds me of this op-ed piece in the LA Times by Joel Stein.  He called food allergies a “yuppie invention” and a “psychogenic illness” and I wrote a post about it here. Now we have a study that says 50% of people who think they have a food allergy don’t.  Where does this leave the sufferers of true food allergies?  Will they be taken less seriously when they try to do something normal like go out to eat?  Will a well meaning chef think well most people don’t have true food allergies so cross contamination is not that big a deal ?  If Aaron’s allergies follow him to adulthood I wish him a world of understanding not a world of judgment and belittlement of his life threatening issue.

09
May
10

Mother’s Day Lazy List Day

By punkymama 3 Comments
Categories: Punky Mama
Tags: , ,

It is Mother’s Day.  If you have read the password protect post you all know where I am going today. My husband just took the boys out and told me to blog.  He has been so sweet and he would not let me touch a dish all day.

1.  All three male people in my house woke me up with breakfast in bed.  Ryan made me a cool thing at school that had a picture of himself as a flower.  He decorated the bag with a picture of me surrounded by my favorite flowers which are sunflowers and roses. Very cute. Aaron made me a card with a picture of him in it and a packet of tea.

2. Think kindly of the folks struggling to become Mothers or who have suffered a loss today.  This kind of holiday can be an emotional landmine. Heck, this can be a tough holiday for people who have a strained relationship with their families.

3.  This week is Food Allergy Awareness Week. I hope to write about this a bit this week.  If you hear a Mom at school, a party, the park, or wherever talking about food allergies and you feel sick of hearing it, just know sometimes food allergies can be a matter of life or death.  I have been there and it is scary.

4.  Happy Mother’s Day or second sunday in May.  Whichever you choose to celebrate!!

28
Mar
10

The Food Allergy Walk

By punkymama 4 Comments
Categories: Punky Mama
Tags: , ,

This morning my friend Jon, sent me a message on Facebook.  It is a link to the annual Food Allergy and Anaphylaxis Network’s “Move for a Cure”. FAAN was instrumental in getting legislation passed so that the most common allergens are now listed on food labels. They are majorly involved with education and research about food allergies. You can find out all about FAAN here.

In case anyone does not know, our son Aaron is allergic to dairy, eggs, peanuts, beef, and pork.  I started this blog the day he almost died when, as a toddler, he grabbed a peanut butter sandwich up off the playground and bit it.  Since then we have learned a lot about food allergies and so far this year Aaron has not had an accidental exposure.  I would love to see Aaron someday not be limited in his food choices by his allergies.   I remember getting stuck in traffic on the Jersey Turnpike one day without safe food for Aaron and found NOTHING he could have quickly at the rest stop.  It was so sad and frustrating that I could not give my hungry child some FOOD when he needed to eat and finding something safe was so difficult.

I talked with my husband and my sister and I think we are going to make this our family “cause” this year.  I am going to set up a team for Aaron.  I think it will be good for him to see people are interested in learning about food allergies, care about food allergies, and we as his family will always support him.  Don’t worry peeps, I will put a link up for you  to support him too.  If anyone is interested in walking with us PLEASE let me know.  The date of the walk  is Sunday September 12.

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