We Started Peanut and Tree-Nut Food Allergy Treatment OIT (Oral Immunotherapy)!

Our peanut allergy treatment journey with IgE numbers over 100, a history of anaphylaxis and skin contact reactions. 

We are getting ready to start OIT (oral immunotherapy) for peanut! 

My worries are and have been:

• How will my daughter's already not so great (sometimes struggles with GERD) digestive system react to daily eating her allergen?
• The possibility of reacting after a dose! 
• Going from being worried about the possibility of accidental ingestion to daily worry of reactions to the daily dose.
• Wondering if a reaction after a dose is not a reaction to the dose, but just a asthma/allergic reaction to her many environmental allergies. 
• The 3 hours round trip to get to the OIT office every two weeks. 
• The stress of making sure I give the correct dose at home and not making a mistake.
• The down time after the dose. 
• The long term, the dosing for life and all of the possible reactions or mistakes etc along the way. Wondering if this is the best choice for my daughter, and for our family. 
• The financial burden.  
• Wondering if she will remain on board with the dosing if she does have a reaction... Etc etc

The plan is that she will start with peanut, and if that goes well we will add cashew and pistachio a few months later, and if we have to, walnut and pecan. Pesky walnut and pecan... Will do the blood draw in the AM and then have the first peanut dose at our next appointment, after they get those results in a couple of weeks.

                     Skin prick test: 24-peanut, 45-cashew, 67-pistachio, the others are various nuts.

All positive in regards to our experience with first OIT app :-) No allergens eaten yet as we are having further testing (blood and hopefully a food challenge) to rule out a couple of nuts that were negative last year but positive barely again at today's skin prick test. The OIT allergist and his staff were wonderful! 

The blood test results:

I am not surprised, but I am now a bit more hesitant and nervous about our first peanut ingestion OIT appt on Monday with these numbers for peanut. Our local allergist will not do in office food challenges with positive results, so we would have to travel to do those in Dr. A's office. 

IgE Peanut >100 Abnormal kU/L Class VI

IgE Ara h 1 67.90 Abnormal kU/L Class V

IgE Ara h 2 >100 Abnormal kU/L Class VI

IgE Ara h 3 38.50 Abnormal kU/L Class V

IgE Ara h 8 0.57 Abnormal kU/L Class II

IgE Ara h 9 <0 .10="" div="" nbsp="">

                                 Bottles of pre-measured doses in my cooler for the drive home

Initial day dosing for peanut OIT (6mg all together but will start at 3mg daily) down the hatch! No reaction except mild itching in back of the throat that went away quickly! The black clouds of worry that hung over me as this day grew closer have lifted! :-) I am so relieved! The nurse was so great as was Dr. A!!

                                                                 Dosing on vacation! 

It has been a few weeks, and we were able to get up to 6mg of peanut at out first in office updose! She is now on 6mg of peanut each day in her 5ml dose. We even went on vacation and gave a dose during an eclipse party! 

After a few doses where she experienced long lasting stomach pain and burning about 15-30 min after the dose we have backed the dose down to 2.5 mg and will gradually build it back up from there. 

                                  Reminding myself that we can take out time on this journey. 

It has been a couple of weeks and we have gotten back up to 3mg. We tried one day of about 4mg and she had stomach burning pain again, so we are holding at 3mg for now. We have also added a daily Zantac to try and prevent the burning stomach pain. 

A couple of weeks later and we are at 3.5mg of peanut and are going strong with no stomach issues! 

....

Months later, (I swear I intended to keep up with blogging) and we are now at 12mg of peanut a day on 8/28/2018. We were in a holding pattern again at 6mg with burning stomach pain, but after switching dosing from the evening to the morning and then to right after school, the pain is no longer a daily issue. My daughter is still on board with this treatment and excited about having no more burning stomach pain. 

Recently we added braces into the equation, so I am a bit nervous about broken skin in the mouth from the brackets rubbing against her lips, we will be rinsing extra carefully after each dose.

Will update this blog post as we go along! 

Food Allergy Humor, Parenting Fun with Food Allergies

Sometimes laughter is the best medicine!

Recently I started a facebook page to share my food allergy and parenting doodles. My hope is share the comic side of the food allergy life and parenting in general. I called it Happy Pancake Parenting as I have been told that the first child is like the first pancake ;-)

Rush Immunotherapy, Environmental Allergens, and Double the Allergy Shots

My daughter has been getting allergy shots for the last two years to help with her environmental allergies. They were working well until she developed a whole batch of new allergies. 

Recently we discovered that my daughter developed new allergies and now she gets 4 shots rather than the two shots that she was previously getting. Her allergy shots have helped her so much that under her allergists care, we were able to lower her antihistamine intake and asthma medications. She felt wonderful for months! Even her oral allergy syndrome was improving, but then all of the sudden, she went from having mostly clear headed and wheeze free days, to struggling again daily with hay-fever, and asthma flare ups. We had moved into a new part of the country, and she had developed allergies to the local environmental allergens. Oddly enough, she is not allergic to ragweed which is one of the most common allergens.

Because of the variety of allergens that she is allergic to (48 out of the 55 tested), the allergist was not able to combine them into fewer than 4 shots. We were told that some allergens degrade the other allergens if combined. Fortunately my daughter is able to tolerate getting four shots at one time. Our allergist told us that it is very unusual to have to get 4 allergy shots at a time and that he only had a handful of patients out of all of his patients that need four allergy shots. He told us that my daughter is supremely allergic, and is a rare case, in his experience.

To go from her 2 shots a month to now 4 shots, she went through a day of rush immunotherapy. Rush immunotherapy is where you get a few months of shots in one or two days. To prepare for this, you have to take a lot of medication. My daughter's allergist had her on a week of pre-medication leading up to the day of, and then more medication for a couple of days after. My amazingly brave daughter had 12 shots in each arm (4 every 25 min) in one morning for a total of 24 shots! She did very well and had just a tiny bit of localized mild swelling. Her arms were sore that day, and the next, but she was grateful to be weeks ahead of where she would have been if we had not done the rush immunotherapy.

To get through her allergy shots, my daughter swears by the "Shot Blocker" which works by distracting your skin with many little hard plastic points. If we forget to bring it, she asks the nurse to give her a good pinch so that she does not feel the needle going in. She also relaxes her arms and a lollipop always helps. Here is the link to the shot blocker on Amazon: SHOT BLOCKER

Printable Allergy Shot Tips Poster for Kids

Tips for Allergy Shots:

My daughter is going through allergy shots. We struggled at first with her fear of shots, and found a few ways to get past it. The poster is free to print for the home or allergist office: 

Food Allergy Aware Letter to Parents

Food Allergy Aware Letter to Parents:

A letter to the parents is always important if certain foods need to be kept out of the classroom due to severe food allergies

Here are a few examples:

To Print from smart iPad/smart phone/iPhone: Touch image to bring it up full size / choose "save image" and then print, or choose "print" right from there.

To print from PC: Right click on image / choose "open link in new window" / right click again on image / choose "save image as" / name image and save to your desktop or file / open from there and print.

To use the blank template in Word, save image to your computer, open Word, click on Insert, add image, choose layout option of image behind text, and "fix position on page". Then you are ready to add text.

Substitute Teacher Handouts for Kids with Food Allergies, Food Allergy Alerts for School Plus Staff Sample Letter to Parents

Substitute Teacher Handout and Teacher Letter to Parents for Kids with Food Allergies

I recently made one for my daughter's new school year. and thought I'd share with you! 

Every teacher has a folder at the ready for a substitute teacher in case they need to be out of the classroom for the day. 

To print, click on image, and save to your device, print from there.

Letter to Parents from Teacher:

Food Allergy Aware Studio and Dojo Posters

Food allergies are a concern not only in the classroom setting, but also in other places like the dance studio, and martial arts dojo. 

There have been a few times over the years where I have had my heart jump to my stomach watching my daughter come out of a studio with a candy in her mouth. Even though her dance teachers have always been told about her severe food allergies, mistakes can happen.

Our rule is only candy from home unless it is pre-approved, but when an instructor or adult in a position of leadership hands a child a candy, sometimes that rule can be forgotten.

Sticky hands from an earlier snack, especially if the snack was eaten in the studio can also be an issue if shared equipment or a shared dance bar is involved. 

A poster is a good reminder for both adults and children alike.  A recent email from a dance teacher asking for a sign for her studio inspired these new posters. 

Thanks to her I can now offer them to you all! 

To print: Click on image, then right click to save to your computer or device, print image.