Today's blog post is by Mekhala, one of my Yoga students.
Her story with her daughter's food allergies is definitely challenging.
It's a story of Courage, Resilience and a deep desire for Positive Change.
It shows a family's commitment to one another and true connections with each other's challenges.
I was very impressed and touched by this real life story and requested Mekhala to write it as a Blog Post for all the readers / students out there.
Hopefully, you can share it with all your family / friends and it can help bring a ray of sunshine and understanding to another family struggling to find answers.
Hi Asha,
Radhika would be tested every year around her birthday with a RAST test that determines how allergic you are to certain foods and I remember being frustrated every year, that the egg allergy stubbornly refused to stay in the life threatening range and the milk one wouldn’t get lower. Our Chicago allergist had prepared me that she may never outgrow these. We needed a divine intervention. And we got one!
Radhika received a few shots of a drug called Xolair (FDA approved to treat asthma, being studied for food allergies) and then carefully measured food doses starting from traces of milk and eggs that you could barely see. For the first few weeks, the Xolair helped in suppressing any allergic reactions, but even as its effect was fading, her body was gradually being trained to build up resistance to milk and eggs. We had visits to the hospital, every 2 weeks, in which the doctors would increase the dose and monitor her carefully for a few hours. The 4-5 hour round trip drive to the hospital and missing work/school were the least of the challenges. There have been ups and downs, allergic reactions at home, a need to readjust our daily schedules and after-school activities, reduced activity for Radhika before/after the food doses (as exercise, hot showers, warm weather can trigger an anaphylactic reaction), etc. However, every inconvenience and low moment turned out to be worth it.
After over a year of starting this process, Radhika had the last nerve-wracking food challenges this week. She was given 12 g of milk protein (equivalent to about a glass and a half of milk) and on a different day, a whopping 12 g of egg protein (equivalent to 2 medium-large eggs), each over a period of 1.5 hours and she tolerated them without any issues. The final test was on Friday, when she ate her first boiled egg and drank her first glass of dairy milk ever! A far far cry from violently reacting to less than a thousandth of an egg, or a thousandth of a glass of milk just last year. We are in complete disbelief.
Radhika is not cured of her allergy. Her skin prick and blood tests are still highly positive; however her body has been desensitized to safely tolerate reasonable quantities of these foods. She will need to eat a small “maintenance dose” of milk and eggs (equivalent to about a third egg and a quarter glass of milk) every single day in the foreseeable future to maintain this desensitization; otherwise, she may start reacting to these foods again. More research is needed to understand for how long this maintenance dose is needed and when desensitization can translate into a cure. We will still need to carry epipens, as an allergic reaction can occur unpredictably. However, this is a small price to pay for not having to constantly worry about whether some food can seriously hurt your child.
This study has likely been the hardest thing Radhika has ever done. It’s not easy to eat what you have been taught to avoid your entire life, the same foods that you can remember to have stopped you from breathing, in the past. There have been days at a stretch when she would feel terrible for a while after the food dose and throw up everything, but still muster the courage to eat it again the next day. She has been courageous and resilient. Also, we didn't know if we would benefit (as this was a research trial), but she has been very willing to do her small part for research so that one day, other kids won’t have to deal with a food allergy like she has had to.
Her tangible reward will be the opportunity to try out new foods from a huge bucket list that she had made at the beginning of the trial – foods and experiences that she has never had before – donuts, M&Ms, going out for ice-cream, school lunches, eating a Ghirardelli sundae in San Francisco, pancakes, etc.. We can’t wait for her to try these (and wouldn’t mind eating a donut or sundae ourselves after years). Neil wants his didi (older sister) to eat vanilla yogurt with him, his favorite. I will have to learn how to bake with milk and eggs, but don’t think anyone will miss my vegan cakes and constant quest for finding new egg replacers, only to ultimately realize that contrary to what most vegans tell you, nothing can completely and truly substitute for an egg like an egg.
Time for breakfast! Scrambled eggs with cheese, anyone?
All images and information are copyrighted to their respective owners.
Her story with her daughter's food allergies is definitely challenging.
It's a story of Courage, Resilience and a deep desire for Positive Change.
It shows a family's commitment to one another and true connections with each other's challenges.
I was very impressed and touched by this real life story and requested Mekhala to write it as a Blog Post for all the readers / students out there.
Hopefully, you can share it with all your family / friends and it can help bring a ray of sunshine and understanding to another family struggling to find answers.
Hi Asha,
As you asked, here's the story that I shared with my friends (on FB) for my daughter's food allergy research study. I realized after sharing it that it became ridiculously long, so feel free to shorten for your blog :).
We are usually very private and don't share information about our kids (or their pictures ever), but in this case, if we can give some families hope, it would be worth it. 5 of my friends shared to their friends and someone called me today to talk about her child who has similar allergies.
Thanks for listening and sorry again to take up time from class. Our yoga group is such a nice group that it feels good to share both the ups and downs of life with them. Thanks for creating such a great environment.
Mekhala
****
I didn’t win the Powerball, but got something better – freedom from the constant worry of something in common sight hurting my child severely or fatally. As most of you know, Radhika has had a life threatening allergy to milk and eggs, since birth. Eggs have been banned from our house for over a decade. As the years progressed, her body began tolerating ghee and baked milk, but unbaked milk and even traces of eggs would cause a severe violent reaction (resulting into some trips to the ER, the last one in an ambulance). This meant no cake or pizza at birthday parties. A choice of only 2-3 restaurants for eating out and quizzing the chefs/manager there like the FBI. Fearing social occasions involving food (and what social occasion doesn’t involve food?). Forgetting our wallet, but not the epipens. Setting up a kitchen during all vacations and restricting vacations to places where you can set up a kitchen. Carrying food for multiple days in a cooler for any school camps. 504 plans at schools. And many more such accommodations...
Radhika would be tested every year around her birthday with a RAST test that determines how allergic you are to certain foods and I remember being frustrated every year, that the egg allergy stubbornly refused to stay in the life threatening range and the milk one wouldn’t get lower. Our Chicago allergist had prepared me that she may never outgrow these. We needed a divine intervention. And we got one!
A year after moving to CA, someone told us about Dr. Kari Nadeau, who leads the Sean Parker Allergy Center at Stanford University and a groundbreaking research study that they were conducting on desensitizing patients to multiple food allergens. After about 3 months of screening tests and visits, we were very fortunate to get in (there were just 48 spots nationwide and the center has a long waiting list). We got in the Phase 2 study and their Phase 1 was the first such study in the world! Most of the other families we met, have been participating from far away cities/states, flying to the center every 2 weeks.
Radhika received a few shots of a drug called Xolair (FDA approved to treat asthma, being studied for food allergies) and then carefully measured food doses starting from traces of milk and eggs that you could barely see. For the first few weeks, the Xolair helped in suppressing any allergic reactions, but even as its effect was fading, her body was gradually being trained to build up resistance to milk and eggs. We had visits to the hospital, every 2 weeks, in which the doctors would increase the dose and monitor her carefully for a few hours. The 4-5 hour round trip drive to the hospital and missing work/school were the least of the challenges. There have been ups and downs, allergic reactions at home, a need to readjust our daily schedules and after-school activities, reduced activity for Radhika before/after the food doses (as exercise, hot showers, warm weather can trigger an anaphylactic reaction), etc. However, every inconvenience and low moment turned out to be worth it.
After over a year of starting this process, Radhika had the last nerve-wracking food challenges this week. She was given 12 g of milk protein (equivalent to about a glass and a half of milk) and on a different day, a whopping 12 g of egg protein (equivalent to 2 medium-large eggs), each over a period of 1.5 hours and she tolerated them without any issues. The final test was on Friday, when she ate her first boiled egg and drank her first glass of dairy milk ever! A far far cry from violently reacting to less than a thousandth of an egg, or a thousandth of a glass of milk just last year. We are in complete disbelief.
The study coordinator at the Stanford Center, had promised me that one day we would go into the eggs aisle at the grocery store to buy a box and she kept her promise. So here we are…
Radhika is not cured of her allergy. Her skin prick and blood tests are still highly positive; however her body has been desensitized to safely tolerate reasonable quantities of these foods. She will need to eat a small “maintenance dose” of milk and eggs (equivalent to about a third egg and a quarter glass of milk) every single day in the foreseeable future to maintain this desensitization; otherwise, she may start reacting to these foods again. More research is needed to understand for how long this maintenance dose is needed and when desensitization can translate into a cure. We will still need to carry epipens, as an allergic reaction can occur unpredictably. However, this is a small price to pay for not having to constantly worry about whether some food can seriously hurt your child.
This study has likely been the hardest thing Radhika has ever done. It’s not easy to eat what you have been taught to avoid your entire life, the same foods that you can remember to have stopped you from breathing, in the past. There have been days at a stretch when she would feel terrible for a while after the food dose and throw up everything, but still muster the courage to eat it again the next day. She has been courageous and resilient. Also, we didn't know if we would benefit (as this was a research trial), but she has been very willing to do her small part for research so that one day, other kids won’t have to deal with a food allergy like she has had to.
Her tangible reward will be the opportunity to try out new foods from a huge bucket list that she had made at the beginning of the trial – foods and experiences that she has never had before – donuts, M&Ms, going out for ice-cream, school lunches, eating a Ghirardelli sundae in San Francisco, pancakes, etc.. We can’t wait for her to try these (and wouldn’t mind eating a donut or sundae ourselves after years). Neil wants his didi (older sister) to eat vanilla yogurt with him, his favorite. I will have to learn how to bake with milk and eggs, but don’t think anyone will miss my vegan cakes and constant quest for finding new egg replacers, only to ultimately realize that contrary to what most vegans tell you, nothing can completely and truly substitute for an egg like an egg.
Time for breakfast! Scrambled eggs with cheese, anyone?
All images and information are copyrighted to their respective owners.
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