27 January 2011

Peanut Allergic Teenager EATS PEANUT

It's Alexander's "Peanut Day". January 27, 2011. Today my son Alexander, a peanut allergic child, is going to eat 1 entire peanut. 
The peanut must be average size. Not small and not large. We are ready. I have shelled peanuts the night before in preparation for today's visit to the doctor ( click here to read my "Shucking Peanuts" story )."Peanut Day" as we have named it, is an important milestone in the treatment Alexander is receiving at Dallas Allergy Immunology. Why a milestone? We both feel the ability to successfully eat a whole peanut with no adverse reaction is a miracle for a person with a severe peanut allergy. 

7:35 a.m. We enter the car to drive school prior to our appointment at 10:15. Fearful I might forget to place the jar of shelled peanuts in the car, I had done so last night. To my amazement no sooner than the car doors shut to the car Alexander remarks, "do you have peanuts in the car?"  He could smell the peanuts right through a glass jar placed in a bag in the back seat of the car.

10:15 a.m. We arrive for our appointment and follow the normal weekly routine. Alexander fills out a questionnaire detailing his current health.

Next the nurse checks his height, weight and blood pressure. 
A peak flow meter test is conducted. What is a peak flow meter test?  
This test is conducted on Alexander every week and measures a his maximum speed of expiration (his ability to breathe out air.) It measures the airflow through the bronchi and thus the degree of obstruction in the airways. Peak flow readings are higher when patients are well, and lower when the airways are constricted.  I like this quote I found on the internet "a peak flow meter test for asthma is like a thermometer for a fever. Both are tools to help monitor what is going on in your body.

Alexander does have occasional asthma; however, we did not realize the silent nature of his condition until Alexander took a Pulmonary Function Test last September to measure how well his lungs were functioning in preparation for this treatment. 
His lung function was only 60%.  See my "Roadblocks" post for those details.
Today Alexander had his "personal best" peak flow measurement of 470. Progress!

We are led into the Exam Room 1 our usual room.

The nurse arrives and enters Alexander's health data in the computer.

The nurse asks me to give her a peanut. In this case I have prepared a harvest. She places the jar of peanuts on the desk and a timer next to the jar. 

While we await the arrival of Angela Gallucci, P.A. for Alexander's exam, we prepare for a possible dose of a whole peanut. Alexander has a routine he likes to maintain. Since he really dislikes the taste of the peanut doses, he must have his "pink lemonade chaser" at the ready. I buy a can of pink lemonade in the break room and he is all set.

Pink Lemonade serves as a chaser after each peanut dose to help eliminate the taste
As we wait I ask Alexander what he is feeling. He says, "I don't want to do this". I ask, "Why?" "Because I don't like the taste (pause) but the result will be good.
I am sure he is a bit nervous although he did not show it.

Ms. Gallucci arrives and reviews Alexander's medical results entered into the computer.
She asks him for details as to why he could not increase his dose last week from the 500 mg capsule to a full peanut. Why the delay
He explains, "I had a cold and my stomach was been bothering me. I skipped a dose. The next morning I tried to take my dose. It (the peanut taste) makes me start to gag in the first place so I threw it up". Click here for details on what had to be done.

Angela Gallucci, P.A.
The exam proceeds. Ms. Gallucci says it is very important to establish a baseline in case he has a reaction. (Not very comforting). Thankfully his exam results are great.

Now it is time for the big moment. She presents Alexander with the jar of peanuts and asks him to select one of average size.
He must have felt she was asking him "pick your poison".

Alexander contemplates his selection of a peanut

He carefully selects the winning peanut. Not too big and not too small.

Then Alexander smells the peanut-his disdain for the odor of peanuts is intense
10:47 a.m.- He did it!  Alexander successfully eats his 1st Whole Peanut.

"What do you think?" Ms. Gallucci asks. 
Alexander replies, "It's different."
She asks, "It taste's better than the peanut flour doesn't it?"
Alexander says, "Yes. It's not as strong as the peanut flour."
"Congratulations! There you go!" says Ms. Gallucci smiling.

I hear Alexander gargling with the pink lemonade. I laugh. He smiles. Finally!

Now we wait. We adjourn to the patient observation area for 1 hour. I am required to stay with him the entire time to watch for any signs of a reaction. 
The hour passes. No reaction. Whew!

We depart for school as if nothing important has ever happened. Back to the routine
Surreal in a way as this was one of the most important moments in his life.

Later at home I ask Alexander for his thoughts on eating a peanut. Quietly he says ,
"I didn't like it but I can handle it!"  
Alexander's grandfather texts him "how did it go eating your first peanut?". Xander replies, "yuckish, but I'm alive so it's all good."
That says it all. 

People with these types of food allergies live under the pressure of a constant threat. An ominous mostly invisible danger of peanuts lurking in places they cannot see or detect.  Click here to read Where Is the Peanut Hiding?

If you have any questions please feel free to post a comment below and I will be happy to reply. Thanks for joining us on our journey!

Here is an informational link on treatment for Peanut, Milk, Egg and Wheat food allergies, Oral Immunotherapy Overview at Dallas Allergy Immunology

Share your food allergies stories. Email your stories to salt.light.truth@gmail.com and I will post them on the blog.  There is a world out there waiting for help or encouragement.

26 January 2011

Shucking PEANUTS for Alexander's Big Day

I can barely believe it myself but in a few hours Alexander will get to EAT A PEANUT!  
Click here to see prior post regarding treatment delays

In preparation for this momentous occasion I was instructed to arrive for our weekly appointment at Dallas Allergy Immunology with my one whole peanut.
I asked "what kind of peanut?" Do I buy a jar of Planters roasted peanuts and use one of those peanuts?

If so, what size? Peanuts vary from small to jumbo sized. Of course the Planters option would have been way too easy. Unfortunately Planters peanut brand is cross contaminated with almonds. Alexander's blood test leads Dr. Wasserman to think my son may have an allergy to almonds therefore roasted peanut that is in a shell. That turned out to be quite an endeavor.

Last week I bought a bag of roasted peanuts in the shell.

I did not want them in the house but the garage was not an option due to the temperature. I placed the bag of peanuts in a gallon size freezer bag and then into 2 layers of plastic bags. I wanted to seal off the peanut fumes. I stashed the peanut package in the back of the closet where it loomed undetected for a week.

Tonight I shucked peanuts or is that called shelling peanuts? (I think corn gets shucked).
Either way I thought "what am I doing? I am endangering my child with the fumes alone."

I sequestered myself behind closed doors in the laundry room and removed the huge bag of peanuts from it's wrappings. I opened the bag of peanuts and the fumes were strong. In order to minimize peanut debris and peanut dust from escaping into the room I used a large plastic shopping bag and proceeded to shell the peanuts at the bottom of the bag. That proved difficult.

Carefully shelling at the very bottom of a large bag

It took a lot of shelling to result in only a few whole peanuts

Shelling was an challenge. It's not easy! The shells crack and send pieces of shell everywhere. Extracting a whole peanut intact has a success rate of 25%. Just when I thought "yes I got a whole peanut" it split in half.  And so does the next peanut and the next....Seriously!  I need Whole peanut.

It was actually quite comical. Picture a scene from the I Love Lucy Show.
The peanut dust is flying everywhere! My hands are covered in peanut dust. The dust had lodged itself under every fingernails. I should have worn gloves! I then creep out of the room to retrieve the plastic gloves from the kitchen, touching nothing along my path. Of course I find an empty glove box!

I am totally contaminated. Where is the lent roller when you need it?  I want to burn my clothes. I wore the wrong clothes for the project. Black corduroy pants and a black sweater which probably sucked up peanut dust. I have a broken wrist and I realize my black Velcro brace probably smells like essence of peanut.

I am a walking danger zone for my son.   Next time I'll wear a hazmat suit!  
There must be a better way.

Click here for Peanut Oral Immunotherapy FAQ'sVery informative.

Share your food allergies stories. Email your stories to salt.light.truth@gmail.com and 
I will post them on the blog. 
There is a world out there waiting for information, help or encouragement.

Here is my meager whole peanut "harvest"

Food Allergy and Anaphylaxis Management Act Becomes Law in the United States

Food Allergy and Anaphylaxis Management Act Becomes Law

The Food Allergy and Anaphylaxis Management Act (FAAMA) was passed into law! This is a major achievement.
This legislation was added into a Food Safety Bill approved by the U.S. Congress during the lame duck session on December 21, 2010. It was signed into law on January 4, 2011 by President Obama. FAAMA, which was written largely by FAAN (the Food Allergy & Anaphylaxis Network), was introduced in 2005 to coincide with FAAN’s inaugural Kids’ Congress on Capitol Hill. This legislation was never acted upon all those years. 
This bill was supported by Sen. Christopher Dodd (D-Conn.), whose daughter has a food allergy, and Rep. Steny Hoyer (D-Md.), who has a grandchild with a food allergy.

What does this mean for those with food allergies?
The federal government will create voluntary, national guidance materials for managing food allergies in our nation’s public schools. These guidelines should make it easier for schools, day care centers and related entities to create and implement policies that will protect students with food allergies.
This law will not supersede state laws. The FAAMA guidelines are to be used as a complement to existing state guidelines or laws

I found the following details on the No Nuttin' website as follows:
"Here is the official summary of the ACT which was introduced in February 2009:
Requires the Secretary of Health and Human Services to develop and make available to local educational agencies, schools, early childhood education programs, and other interested entities voluntary guidelines to develop plans for individuals to manage the risk of food allergy and anaphylaxis in schools and early childhood education programs. Directs that such guidelines address:
(1) parental obligation to provide the documentation of their child’s allergies;
(2) the creation of an individual food allergy management plan for each such child;
(3) communication between schools or programs and emergency medical services;
(4) reduction of exposure to anaphylactic causative agents;
(5) food allergy management training; and
(6) administration of epinephrine.
Allows the Secretary to award matching grants to assist local educational agencies in implementing such food allergy and anaphylaxis management guidelines."


I am sure many of us with children who have serious food allergies have struggled with schools and camps to try and ensure a safe "food allergy friendly" environment. 
It is a constant struggle and hopefully this new law will truly help the situation many of our children face at school. 
The level of precautions that schools currently take to protect children with food allergies vary wildly. Direct parental advocacy and involvement at their local school is often vital for creating food allergy policies and procedures coupled with anaphylaxis plans.
It is critical that schools and day care centers have careful procedures in place, train staff and strictly follow those procedures. 
Many children have died from exposure to food allergens in schools. In December a 13 year old Chicago girl with a peanut allergy died after eating Chinese food at a school partyI will write a post about these tragic deaths in the future.

Read about this new law by following the links below. 

24 January 2011

Dose Delayed No Whole Peanut Yet

If you are new to this blog, todays post details a problem my son Alexander encountered last week with his peanut oral immunotherapy treatment. 
See my prior post "Delay in Eating Whole Peanut Probable"

True to my suspicions Alexander was not allowed to increase his peanut dose to 1 whole peanut. 
Here's why.
Last week Alexander skipped his night time dose due to nausea. The next morning he reluctantly followed the doctors instructions and took half of his 500 mg dose. Unfortunately Alexander vomited up the dose. I called Dr. Wasserman and his instructions for my son were as follows:
1- drink some clear liquids.
2- After 1 hour try to eat some crackers.
3- after another few hours try ingesting a half dose of the 500mg capsule.
4- if successful then take a full dose that night

If you are wondering how one ingests half of a dose, read on.
For his half dose Alexander emptied the entire 500 mg capsule of peanut flour into a glass of blueberry IZZE Sparkling Juice and stirred it thoroughly. Next as directed by the doctor he poured out half of his peanut "cocktail" into the sink then proceeded to drink the remaining amount.
This worked perfectly. No problems. That night Xander took a full dose dose of 500 mg of peanut flour in capsule form. 
He was back on schedule at least for the moment.

Dr.Wasserman decided not to increase Alexander's peanut dose for another week

Voila no eating his first whole peanut for my boy- not yet.
My opinion is really of no consequence; however, I agreed (silently of course) with the doctors decision. 
My "mothers instinct" had spoken to me saying "BAD IDEA". 
It made no common sense to me to hurry the treatment just to stay "on schedule". Caution should be the byword. I believed that a sick child with his immune system now lowered should not have it stressed further by increasing the dose of a food to which he is highly allergic

I had not conducted any online research on this topic when the next morning my friend Stacey Hanley sent me an email with some related information. Her son Nate has already successfully completed the desensitization phase of the same treatment Alexander is receiving. Nate is now able to eat Snickers candy bars. Yikes!  I will write her interesting comments in my next post.

For now the "Countdown to 1 Whole Peanut" has begun again.
Thursday January 27th Alexander hopes to be allowed to increase his dose to 1 Whole Peanut!