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!

Delay in Eating Whole Peanut Probable

Probable delay in eating 1 Whole Peanut. Alexander is due this Thursday, January 20 to have his peanut dose increased from 500 mg of peanut flour in capsule form to 1 Whole Peanut. We have been counting down the days to this momentous occasion.

See my prior posts 
"3 Days Until 1 Peanut" and 
"Countdown to 1 Whole Peanut"
This past weekend Alexander started having a runny nose and sore throat. 

My thoughts rambled..."could this be a slight reaction due to the 500 mg peanut dose?" 
or "is this due to seasonal allergies caused by a change in the weather?  
Nasal and asthma symptoms in Alexander are often triggered by weather changes. 
"Perhaps attending an extremely cold soccer game last Friday night wearing only a thin hooded sweatshirt might have started the whole thing". 

Very cold night to watch a soccer game in a hoodie

He seemed to get a little better until last night when after playing in a soccer game he said "I feel sick to my stomach. I think I ate too much at lunch." He proceeded to eat very little dinner. 
When the time came to take his peanut dose he said "I can't do it". The thought of it makes me want to throw up anyway and my stomach is already gurgling."  

Hmmm- what to do?  
Tell him he must take the dose? 
The dosing instructions we received from Dallas Allergy Immunology for the peanut desensitizing treatment are very precise. The patient is to avoid any deviations from the dosing schedule. If a dose is missed for any reason a call is to be placed to the doctor.


Alexander pleaded with me not to take his peanut dose so I called the doctor's answering service. 
Dr. Wasserman returned my call and he agreed that Xander should not take the dose. 

His instructions:
Skip the dose. Take a half dose in the morning followed by a full dose in the evening. 
We followed those instructions. 
My son was very happy he did not have to take the peanut dose.

Dateline this morning- Xander still feels sick to his stomach. We requested he take the dose anyway. Of course he threw it up immediately. 
Alexander really dislikes the taste of peanuts and almost gags any time he takes a dose. 
He always managed to ingest the dose successfully in the past; however,this time an already queasy teenager plus the dreaded peanut taste was the perfect combination for a return trip of the peanut dose. 

Stay tuned to find out what happens next....

3 DAYS UNTIL 1 PEANUT

The days are ticking down until Alexander eats his 1ST WHOLE PEANUT! 
Last Thursday January 13th Alexander's dose was increased from 250 mg of peanut flour encased in a capsule to 500 mg of peanut flour. If he tolerates this increased dose, Alexander will eat 1 WHOLE PEANUT this Thursday morning!


Hopefully there are only a few days left to take the dose in a capsule which per Alexander is "kind of a pain". Every last bit of peanut flour has to be scraped out of a small capsule into the liquid of your choice. 
 Alexander perfected the method. The peanut flour is mixed into the liquid. He then drinks his smelly "cocktail". Next more liquid is poured into the same glass then stir and drink. 
It's also important to rinse your mouth and swallow to remove all peanut flour from that area. 
Per Xander " it's like using mouthwash and then you swallow it."
See my post "Peanut Allergy Treatment #3 and #4 for information on the peanut flour filled capsules. http://justalittlepeanut.blogspot.com/2010/12/peanut-allergy-treatment-3-and-4.html


The only possible "hitch" (ie-complication) affecting the decision to increase the dose this  Thursday is the runny nose Alexander has developed this week. 
We believe the runny nose is due to the weather change and sitting outdoors in cold weather watching a nighttime soccer game without a warm coat. 
We will have to wait till Thursday to see what Dr. Wasserman advises.


Tonights peanut flour "cocktail"?  
Knudsen's Just Cranberry Juice (very strong flavor) mixed with the peanut flour from the capsule. Alexander pinches his nose to reduce the flavor and makes very unhappy noises as he chokes down the elixir. He chases it with fresh squeezed tangerine juice to DROWN OUT the peanut taste. His dad comments " you'd think he was swallowing ... (I must censor the comment). Suffice to say Xander is not liking the flavor of peanuts!

Peanut Allergy Treatment #5 -A New Peanut Dose

Alexander is getting closer to eating his FIRST PEANUT! 
The countdown to 1 whole peanut continues.  January 20th is "P-DAY"


On January 6th, 2011 for Peanut Allergy Treatment #5  Alexander received his new dose of 175 mg of peanut flour in capsule form. 
I noticed this dosage amount was not on the dosing schedule I originally received so I asked physicians assistant (PA) Angela Gallucci about the inclusion of a 175 mg dose.  
Ms. Gallucci is the primary PA in charge of the Food Oral Immunotherapy (OIT) program at Dallas Allergy Immunology.  


The schedule given to me when we began treatment is shown below. 
The chart shows all the doses to be taken after Day 1 of treatment (which is an all-day affair).  Follow the link below to read my post entitled "Peanut Allergy Treatment Day 1" for those details.
http://justalittlepeanut.blogspot.com/2010_12_02_archive.html

Ms.Gallucci told us a new 175 mg dose was only added recently. 
I asked why?
She explained that all the dose increases for a peanut patient up the 100 mg dose had been a doubling of the prior dose. The increase from 100 mg to 250 mg was more than double.

The new "intermediate" dose of 175 mg was added because the jump from a 100 mg dose to 250 mg dose had caused a few reactions in patients. 
Now all patients who tolerate the 100 mg dose successfully will take the 175 mg dose and then proceed to the 250 mg dose.


We appreciate this conservative approach. 
Alexander was only the 4th peanut patient to receive this intermediate dose.  He tolerated this dose perfectly with no problems. We were told the other patients who received the 175mg dose also had no reactions.


It is reassuring to observe that the Food Oral Immunotherapy peanut program offered by Dr. Wasserman appears to be closely evaluated on an ongoing basis with adjustments made as needed. We are pleased with Alexander's results.


Our entire family is very thankful a peanut allergy treatment is available.

United States Peanut Allergy Treatment

I have been asked where peanut allergy treatment is being offered in the United States so I asked Dr. Wasserman of Dallas Allergy Immunology. He currently treats my son Alexander for his peanut allergy. Alexander began treatment on December 2nd. Progress to date has been smooth. See my prior posts for details.
Dr. Wasserman knows of only 3 places in the U.S. offering treatment for peanut allergic patients.


1- Dr. Richard Wasserman Dallas Allergy Immunology.
See "Helpful Links" for the website. 972-566-7788.


2- Dr. Lyndon E. Mansfield in El Paso,Tx. 915-532-2663


3- Dr. James W. Baker in Lake Oswego, Oregon. 503-636-9011


Note- there are also clinical trials are being conducted in the U.S. and the U.K.


I hope this information is helpful.

Research Peanut Allergy CURE in the U.K.

Research for a peanut allergy "cure" is ongoing around the world.  "Cure" may be the wrong word to described the near-term hoped for results.  From what I've read thus far the current "treatments" being offered (including the treatment Alexander is receiving) and the hoped for future treatments will result in a patient being desensitized so they can tolerate peanuts. This is a fantastic result in my humble opinion.  Alexander would be able to tolerate ingestion of peanuts and....
-not worry about cross-contamination 
-eat cookies off a tray mixed with peanut butter cookies
-ride on an airplane next to someone with a bag full of peanuts 
-sit with his friends eating peanut filled snacks
-eat in a Thai restaurant
-travel to Asia (lots of peanuts in the food in many Asian countries)
The list is endless. You get the idea.


Information in several articles leads me to believe that treatments for peanut allergy may or may not result in a technical "cure" over time for the allergy itself but there is not enough data to know at this point. 


Below are links to several articles written about the research conducted in the U.K. by doctors at Cambridge University. The articles from 2009 and 2010 provide information on a small pilot study that was successfully conducted and the current research being conducted by a team of doctors from Addenbrooke's Hospital in Cambridge, England. The current study will follow over 100 children ages seven to 17 over the course of three years. This is the largest trial of its kind in the world.


http://www.cuh.org.uk/addenbrookes/news/2009/feb/peanut_allergy.html
http://www.politicsdaily.com/2010/02/22/parents-rejoice-peanut-allergy-cure-within-sight-british-stud/
http://www.naturalnews.com/029103_peanuts_allergy.html 
http://www.examiner.com/parenting-in-washington-dc/new-study-offers-hope-for-children-with-peanut-allergies
http://www.dailymail.co.uk/health/article-1252804/Cure-peanut-allergy-Technique-used-tackle-reactions.html


See my prior POST entitled PEANUTS TO CURE PEANUT ALLERGY for a video on research at Duke University.
Over time I will post links to news articles on peanut allergy research studies including articles on the research conducted by Duke University and Arkansas Children's Hospital under the direction of Wesley Burks, MD. 

Countdown to 1 WHOLE PEANUT

COUNTDOWN to 1 WHOLE PEANUT. We are counting the days until Alexander eats his 1st Whole Peanut!  A few weeks ago Alexander pointed this out to me. He knew exactly how many weeks until his first peanut. I must admit to not paying close attention to the "dosing schedule" so as to be aware of this fact.


Clearly this is a "big deal" to Alexander (and to our family).
We began the peanut oral immunotherapy program at Dallas Allergy Immunology on December 2, 2010.  This treatment is designed to desensitize my son to peanuts so we do not have to worry about accidental ingestion and its consequences which needless to say could be dire. I have documented this process to date in earlier posts on this blog. Check them out. 


For treatment #5 on December 30th, 2010 Alexander's dose was increased to 175 mg of peanut flour. Again in pill form.  
We will follow the same procedures at home as our prior pill doses. We dose 1 pill twice per day. 
There must be an interval of 9 to 15 hours between each dose. This is to be strictly followed. 
Alexander keeps a "dosing chart" (teenage style) noting the time of day he takes each pill.

If Alexander is able to tolerate the next few dose increases he will graduate to 1 whole peanut. The schedule is as follows:
COUNTDOWN
Jan 6 -  increase dose to 250 mg of peanut flour
Jan 13- increase dose to 500 mg of peanut flour
Jan 20- increase dose to 1 whole PEANUT

1 whole peanut - innocent looking but dangerous to many.
To eat a peanut is a revolutionary act for a peanut allergic child.


I decided to ask Alexander (15 years old) what he is thinking or feeling about eating 1 peanut. Here is what he said:


Q- I know you are looking forward to eating your 1st peanut. What are your thoughts?


A- "I am ready to get it over with. The sooner it gets done the safer I'll be."

Q - Are you afraid of eating a peanut?


A- "Not really. I'm not really afraid of it since I have made it this far.


Clearly Alexander feels he will have some protection from cross contamination once he is able to tolerate 1 peanut. 
Dr. Wasserman's staff has said Alexander will have some protection. 
The more peanuts he is able to ingest as his doses increase, the more protection he will have. 
For the moment I am a little wary of allowing any exposure to peanuts with the exception of his daily peanut dose.


Another friend of mine Stacey Hanley told me she and her son Nate felt safer after he ate this 1st whole peanut.
Stay tuned!

Just A Little Peanut: Countdown to 1 WHOLE PEANUT

Peanut Oral Immunotherapy FAQ's - Frequently Asked Questions

My son Alexander is being successfully treated for his life threatening peanut allergy.
Click here to read more about his experience eating peanuts as part of his treatment.


Below - Links to each of separate Oral Immunotherapy FAQ pages for Peanut, Wheat, Milk and Egg published on the website of Dallas Allergy Immunology.


Following the links below I have copied a few of the 27 Frequently Asked Questions about Oral Immunotherapy for Peanuts as published on the website of Dallas Allergy Immunology www.dallasallergy.net (which is Dr. Wasserman's website). 


Links to the pages for the Oral Immunotherapy FAQ's. Each allergen has it's own page dedicated to questions for that particular food and its respective oral immunotherapy program.
PEANUT   http://dallasallergy.net/peanut-oral-immunotherapy-faqs
WHEAT    http://dallasallergy.net/wheat-oral-immunotherapy-faqs
MILK        http://dallasallergy.net/milk-oral-immunotherapy-faqs
EGG         http://dallasallergy.net/egg-oral-immunotherapy-faqs.


Below are a few of the PEANUT FAQ's I found most helpful. On the Dallas Allergy website there are 27 frequently asked questions and the relevant answers to each.
Question 1:  How long will the entire process take?

A. The first day procedure will take about 7-8 hours. If there are no reactions during the oral immunotherapy, you child will be eating a full serving of peanuts in about three months.

Question 3: What is the timeline for the months after the first day?
A. Exactly how it will go depends on each individual child. If everything goes well, some amount of the whole food will be eaten during the second month and a whole serving of peanuts may be eaten by the fourth month. By four months, if there are no reactions, two doses per day will be required to maintain desensitization.  After one year the dosing frequency will be reduced to once a day.

Question 5:  How often can the dose be increased?
A. The interval between dose increases is a minimum of seven days.
Question 6:  What time of day should home doses be given?
A. For twice a day peanut dosing, try to make the interval between peanut doses no less than 9 hours and no more than 15 hours.

Question 8:  How long should my child stay awake after the evening dose?
A. Children should be observed for at least one hour after the dose is given.  They should not be allowed to sleep during this time.

Question 10:  If there is a reaction at home, what should I do?
A. Treat the reaction the same way you would any food reaction; antihistamine if there is just rash, Epi-pen if there are other symptoms of anaphylaxis. If there is just one or a few hives, DO NOT give antihistamine for the first hour so we can see if the reaction progresses. If the hives are increasing, give antihistamine. Call us after the appropriate immediate intervention. We will give instructions on future dosing.

Question 16:  What if my child is sick and can’t take the doses on schedule?

A. If there is a gap of more than 15 hours between doses, call before giving the next dose. If it is less than 15 hours, pick up on the standard schedule.

Question 17:  When can foods containing peanuts be introduced into the regular diet?

A. Foods containing peanuts may be introduced into the diet at the end of the oral immunotherapy process

Question 18:  What is the goal of this process?

A. The number one goal is safety; to allow the patient to eat peanuts and foods that contain peanuts without thinking about it.

Question 21: Does my child need to avoid exercise during the oral immunotherapy process?
A. Exercise should be avoided for at least two hours after peanut dosing, but it is ideal to avoid exercise for four hours after dosing.  Exercise following peanut dosing increases the chance of a reaction. 
Question 23: How much peanut can/must my child eat following completion of the oral immunotherapy process?
A.Your child must ingest 8 peanuts twice daily as a maintenance dose for the first year following completion of the oral immunotherapy process.  The next year the dose will be reduced to 8 peanuts once daily.  Your child may also consume as much peanut as he/she would like in addition to the daily maintenance dose upon completion of the oral immunotherapy process.  We will have regularly scheduled follow-up appointments, and if the time comes when the frequency of the maintenance dose changes, we will let you know.  Until then, your child must continue the twice daily or daily maintenance dose. 


I hope you find this information to be helpful. For a complete list of the peanut FAQ's be sure to visit the relevant page on the Dallas Allergy website. Link provided above.

Peanut Allergy Treatment #3 and #4

Appointment #3 December 16th. 


I was unable to take Alexander to his appointment so I enlisted the help of his grandmother Judy. She was great. Judy had to pick up Alexander (and his brother Dylan) at school and take them to the peanut appointment. All went smoothly yet to my surprise Alexander's came home with a "peanut pill".                                                                                     
No more peanut and grape juice cocktail. No more refrigeration. 
The pill turned out to be a much easier way to take his dose although according to Xander "the pill is a pain". 
The peanut capsule is teeny tiny. 
The peanut protein has to be dug out of the capsule with a toothpick to get every grain. Needless to say my son is looking forward to the capusule size increasing so he can eliminate digging for the peanut dust with a toothpick. 
Swallowing of the capsule is not allowed. 
I am not sure why. 


For his first at home dose Alexander mixed the peanut powder into yogurt. This worked "ok" but not great. Eventually he chose to mix the peanut flour into liquid. 


The instructions he received from the nurse were explicit when it came to mixing the peanut flour from the pill into liquids. His brother Dylan was quick to remind him of this fact.
The rule: Mix the entire capsule contents into a glass of liquid then swirl the powder to mix well. Drink. Next to be sure no peanut protein or traces are stuck on the sides of the glass, add more liquid to the same glass then swirl to mix and drink.


The remainder of the week proceeded normally and Alexander was very diligent to follow the dosing instructions and timing exactly. Another successful week!


Appointment #4 December 23rd


We arrive at the office and follow the same routine as outlined in an earlier post. 
Believe me I am so thankful that this process is becoming routine.
What a relief and a blessing the peanut desensitizing is going well thus far.


Alexander's dose is increased to 100 mg of peanut flour given twice daily as shown in our dosing instruction sheet picture below. 
Since it would be so much easier if the peanut pill could be swallowed I asked the Physician's Assistant why the dosing instructions did not allow swallowing of the pill. It turns out that no research has been done to determine if this capsule itself would be fully digested. If not then the peanut flour would not be fully absorbed either. 
Ok. Good rule. Makes sense. 
We wait the customary 1 hour after the dose is administered - no reaction and we are on our way home.

At home Alexander embarks on the project of digging the peanut flour out of the tiny capsule. 

This time the new increased dose of 100 mg is contained in what seems to Xander to be the same teeny size capsule. (to my eye it is slightly bigger).

This time the toothpick method of extracting the last bit of powder is traded for a new "improved" digging device pictured below. (I have cropped the photo for an up close look)

To Xander's delight indeed the new tool proves handy. 

The dosing method is a follows.

1) The capsule is opened and the peanut flour is added to a glass containing some liquid. Alexander uses gatorade or juice

2) Xander drinks the solution immediately. 

He does not like the peanut taste but the tried and true method of holding ones nose works like a charm. 

4) Again more gatorade is poured into the same glass and swirled around to ensure every single molecule of peanut flour is mixed into the liquid. 

5) Down the hatch!  

6) The current dose is successfully taken.