Our Daughter’s Peanut Allergy & OIT Journey
Freedom Allergy, Pediatric Allergist, Peachtree City, Marietta, Georgia, Oral Immunotherapy, Peanut Allergy
Our Daughter’s Peanut Allergy & OIT Journey
Written by Natalie V.
Before my husband and I found out that our 15-month-old daughter, Georgia, was allergic to peanuts our lives with her and our 4-year-old son, Bennett, were completely typical. Neither of us, nor any of our immediate family members, had ever had experiences with food allergies of any kind. Being from Louisiana, which is known for its good and rich food, we had never dreamed of reading labels or asking any questions about the ingredients in what we would eat! In South Louisiana, we are not people who EAT to LIVE, we are people who LIVE to EAT! So the day that we discovered our daughter was allergic to peanuts came as a complete shock and was mind-boggling to us.
It all started when my best friend from high school and I were making PB&J sandwiches for her son’s birthday party that would be held in Audubon Park. She and I had made loaves of pumpkin shaped PB& J sandwiches for the Halloween themed birthday that October in 2009. We were just finishing up, when little Georgia reached for a sandwich. I did not hesitate to give her one, as she had had peanut butter on at least two other occasions (my sister-in-law’s peanut butter fudge which was a family-favorite and in peanut butter crackers fed to her once before). Georgia left the kitchen, ate her sandwich, and in about five minutes came into the kitchen where we were cleaning up. Her lips were swollen and she was crying. I kept looking at her mouth to see where the blood was because I thought for sure that she had busted her lip on something in the living room. That’s when my friend, who is also a nurse, looked at me and asked if she was allergic to peanuts. I said “no”, and she said that she appeared to be having an allergic reaction, and we should get her to the ER immediately!
My husband and I rushed out of their house and two blocks away to Children’s Hospital of New Orleans. She was seen right away (before a little boy who was screaming in pain with a broken leg!) It all happened so very fast, all I could think of was how lucky that we were so close to such a good hospital at the time. My friend had given her a dose of Benadryl before we left her house, and the ER doctor said that it definitely saved her life! Georgia’s reaction had escalated once we got to the ER (she was scratching at her little neck so much there were reddish-purple streaks down it), and if it had not been for the Benadryl which had slowed the progression enough for us to reach the hospital, we could have lost her. That thought is hard to shake! They gave her a shot of epinephrine in the ER and within minutes she was back to normal and was even able to attend the party! We were so relieved and were so thankful! But, then it hit us what we were about to undertake as a parent of a child with such a severe food allergy.
If you are reading this, I’m sure you know what our next few days and 8 years were spent like – the worry, the feelings of frustration, the heartbreak, the feelings of panic and pure helplessness at times – all because of food! We had to learn how to read labels carefully and advocate for the safety of our child, even if it meant indirectly offending someone at times. Everyone means well, but there were often times when people just “forgot.”
One day, I was on Facebook and somehow came across the group called OIT101. I requested to be a member of the group and I researched this new treatment for food allergies for about 2 years. Each morning that summer when I’d wake up, I’d read a new post about another kid being “cured” of their allergy. I would be in tears as I drank my coffee, reading their success stories. That’s when I knew it would one day happen for us too! The problem was, we lived too far away from doctors practicing in OIT, and it would (in my mind at the time) be way too expensive depending on insurance coverage and travel plans.
I was speaking about it to another friend of mine that same summer when visiting her in Atlanta. We looked it up and the nearest clinic was just blocks from her house! That gave me hope that we could maybe move in with them for a little while the following summer to get started.
I continued to research OIT for 2 years and came across tons of stories about the doctor and the team who would soon CHANGE OUR LIVES, Dr. Ruchir Agrawal! I called his office and left a message for him to call me back to discuss our case. Within a day, he had returned my call and convinced me that it was possible to travel to see him as often as we could, given our schedule. He assured me that any little bit that we would do, would be protecting her more from her peanut allergy than she was at the time. His words were so encouraging! The next day I submitted her blood work results and set her first appointment. We didn’t have all the kinks worked out yet, I just knew that we’d be taking her to that first appointment!
The next days were spent discussing schedules and how we could rearrange our upcoming summer travel plans to make a stop in Peachtree City, GA to meet with Dr. Agrawal and his team! I knew that once we made that first appointment, everything else would start to fall in place. The day came for our first visit, and the emotions were a mix of every emotion possible. I just kept praying for me to “accept the things I cannot change and the courage to change the things I can…THE COURAGE TO CHANGE THE THINGS I CAN, and the wisdom to know the difference!” Then, I knew that it would all be alright!
We met Dr. A for our first appointment, which was thankfully covered by our insurance. We only had to pay the copay at each appointment and of course, the plane tickets. He and his team (Carla, Danielle, & Heidi) were just as friendly and informative as I had imagined from all the reviews I had read online.
We did a skin test and her results were astonishing! The reaction left a huge hive! Dr. A said that since she had such a big reaction to the skin test, we would hold off on doing a food challenge and instead start OIT. She had her first few micrograms of peanut flour mixed with water from a syringe.
We were instructed to go home, continue dosing every day at this amount and return when we could. We went home and started to research travel plans, book flights, and make appointments. We were eager to make this happen for our sweet girl!
I would not consider us to be wealthy by any means. I work for our local school district as a speech-language pathologist and my husband is, ironically, a health insurance salesman, but we were willing to give up anything to make this happen for our child. That being said, we were able to make it work by finding cheap airline tickets (booking way in advance) through Southwest Airlines, leaving on early flights and flying back home on the same day of the appointment. That way too, she didn’t miss out on any more school. Southwest Airlines was very accommodating to her peanut allergy and allowed us to preboard every trip so that we could choose a safe seat and wipe off the area to make sure it was as clear as possible from peanut dust.
We continued to visit Dr. A and his team every 2-3 weeks……
We still remember the day Dr. A said, “You don’t have to worry about reading labels.” What?! That was a freedom in itself. Then when he said, “You’re okay to have food cooked in peanut oil,” and we didn’t make it to Terminal C, without Georgia stopping for Chick-fil-A!
8 months, 13 visits (1 sixteen-hour round trip drive and 12 round-trip flights from New Orleans to Atlanta) later, our sweet girl graduated from OIT by consuming 7 grams of peanuts! We were so thankful at what this meant for us and our 9-year-old!
Since graduating from OIT, we can now enjoy having peanuts and peanut butter in our house again after all these years! Her brother was the most excited, as he would often go to friends’ houses and enjoy all the PB&J sandwiches he could eat when he was not around his sister!
She can now enjoy all holidays and attend: slumber parties, field trips, her brother’s baseball games, other sporting events, while eating out at restaurants, ice cream shops, and bakeries at ease; all without having a worry about cross contamination in her food. She can even dose at these events. Huge win!
We still carry our Benadryl and 2 Epi-pens as a precaution, but we know she is so much more protected and the chance of her actually having to use them would be slim. That is such a refreshing feeling! We love that she can participate in all activities now safely and we are so very thankful that our prayers were answered.
Since Georgia does not like the taste of peanuts at all, OIT Maintenance has been a little of a struggle. She has recently been able to tolerate dosing with Nutter Butter cookies, however, which she thinks tastes a little better. We remind her that having to eat 1.8 Nutter Butters a day is SO much better than that constricted life we use to live! That helps her to put it in perspective. She loves her new freedom and all the doors that were open to her because of OIT. She couldn’t think of trading it now!
Georgia is happy that the Halloween pile she CAN eat was bigger than the pile she COULD NOT eat that year for the first time ever!
Our fearless princess is now leading the “normal” life of a nine-year-old girl thanks to OIT! #oitworks
A Proactive Approach to Allergies and Feeling Empowered
Freedom Allergy, Pediatric Allergist, Peachtree City, Marietta, Georgia, Milk Oral Immunotherapy, Food Challenges
A Proactive Approach to Allergies and Feeling Empowered
Written by Meredith S.
Dr. Agrawal has cared for our son for almost three years, and the transformation has been a real gift. John has multiple severe food allergies, environmental allergies, and asthma. Dr. Agrawal has helped us get John’s allergies and asthma under control, and we are addressing the food allergies through oral immunotherapy. For nine years, our only plan was avoidance of the allergens and annual testing; now we are taking a proactive approach. Dr. Agrawal is so knowledgeable about food allergies and he explains the testing in a clear way. As John’s test results have shown improvement, we’ve done food challenges to confirm he has outgrown some allergies. We travel to Freedom Allergy from Memphis, but what we have gained makes the hours of travel worth it for us. Our son is confident and knowledgeable rather than fearful, and we feel empowered rather than helpless.
Being able to live a safer and fuller life, thanks to OIT
Freedom Allergy, Pediatric Allergist, Peachtree City, Marietta, Georgia, Peanut Oral Immunotherapy, Eczem
Being able to live a safer and fuller life, thanks to OIT
Written by Carri P.
Dealing with a peanut allergy and eczema has been a way of life for our family since Chloe was a baby. The eczema came first and probably should have been a warning sign that food allergies were a possibility. Having no prior experience with food allergies or eczema, we didn’t know much about either. Unfortunately, I also didn’t know the severity of the situation when she had her initial reaction at 16 months old to an amount of less than a teaspoon of peanut butter. We were told to give her Benadryl and that was that. Looking back, I am so thankful that the reaction didn’t progress. A few days later, we were given a prescription for an EpiPen, and told to avoid all nuts by our pediatrician.
The next several years for Chloe were not exactly normal, as most food allergy parents would understand. It didn’t take long for us to acquire a wealth of both knowledge and anxiety. Our family had all been conditioned to check food labels and life revolved around keeping our little girl safe from accidental exposure. We were lucky to not have any further reactions from peanuts since her initial exposure. I say lucky, because at some point, no matter how careful a parent is – mistakes can and do happen. We sought out a peanut free preschool and learned that we had to educate parents on what that truly meant. We then had to decide about elementary school and were lucky to find a peanut free private school. Chloe was extremely saddened when it closed at the end of her first grade year. That left us with no peanut free options and we were not prepared to have her in a public school setting even with precautions.
Eczema continued to be ongoing struggle. Summer humidity, time spent in the sun and sunscreen all seemed to be culprits that aggravated Chloe’s eczema. She would scratch until she made bloody sores. The most noticeable eczema would appear on her eyelids and below her eyes. The eczema was something that Chloe suffered with, but in comparison to the worry over accidental ingestion of peanuts, it wasn’t high on my list to seek a doctor’s opinion.
In the fall of 2015 Chloe was attending an online public school, which equated to homeschooling in her mind. The situation was less than ideal to her after being happy in her peanut free school the previous year. I was at all time low emotionally struggling about what the right path was for her. It was then that I first heard about OIT. I was immediately intrigued and also frightened. It took me a few months to make the call to Dr. Agrawal’s office to set up a consultation for OIT. At our first appointment in January of 2016, we discussed her food allergies and eczema. The decision to begin OIT was immediately clear once I had met Dr. Agrawal. He explained the protocol and informed us about the use of a good probiotic with specific strains that help with eczema. Chloe did an oral challenge for all tree nuts, except pecan and walnut. She passed that and we decided to address pecan and walnut after she reached maintenance for peanut. For the first time in Chloe’s life, we had someone on our team to help us overcome the struggles and isolation of allergic living. We were excited so to get started at the end of January of 2016.
Early stages of OIT – dosing with liquid peanut solution.
Chloe’s experience with OIT was a relatively smooth journey. She didn’t have any problems other than her skin. The amazing thing is that her eczema improved dramatically throughout her up dosing phase, even during the summer months. Applying cortisone cream was a daily occurrence prior to OIT. During OIT, she had a few mild flares that I think were related to up dosing and also the summer humidity. The main issue we had with her skin was the occurrence of a random, small hive appearing usually on her arms or hands. These never progressed and would always subside within half an hour. These were quite alarming at first until we learned that it was just a sign that her body was learning to accept the allergen. At some points along the way, she would experience this several times a day and other days nothing would appear. It just became our normal to notice it and then make sure that it didn’t progress. During OIT, we had to learn to let go of some of the fear when we were cleared for cross contamination. Sometimes the mind has to catch up to the body. The daily dosing and observation period became routine. When we had questions or concerns, we knew Dr. Agrawal was only a text or phone call away.
Before we knew it, Chloe was nearing maintenance. She had been taking her probiotics daily, just like her peanut dose. Her eczema had become practically nonexistent. We had slowly begun to enjoy the freedom that OIT brings. We had sheltered Chloe in almost every way possible to keep her safe. She had not had play dates at friend’s houses, but always at her own home. She had only been to peanut free schools. We had never had ice cream scoops at a parlor. She was always the one at the sports banquet who couldn’t enjoy the cake like the rest of the team. We tended to frequent the same restaurants that made us feel safe for her to eat. Imagine a nine year old’s delight to finally go to friends’ homes, go along with other families to a movie theatre and be able to eat the birthday cake that everyone else is having. These are the small freedoms that mean so much!
Chloe reached maintenance at the end of November 2016. Overall, it took about 10 months, which would have been less without some scheduling issues on our part. Maintenance has been going well for two months. Chloe has passed an oral challenge for pecans and walnuts so tree nuts are no longer a concern. She has continued the probiotics to keep her skin healthy. She has not experienced any eczema or random hives since reaching maintenance. We have continued to enjoy new freedoms and Chloe has tried several new foods that were off limits in the past due to cross contamination. What we don’t do anymore is check labels and live in fear. The biggest change planned for this August, is that Chloe will start 4th grade at public school. I cannot thank Dr. Agrawal enough for providing the means to allow Chloe to have a safer, fuller life without the fear of peanuts holding her back.
Please visit www.smashingpeanuts.blogspot.com to read about Chloe’s experience with OIT in greater detail.
A day of celebration – the day Chloe reached her peanut maintenance dose.
Starting Young – Breckan’s OIT Journey
Pediatric Allergist, Peachtree City, Fayetteville, Marietta, Georgia, Peanut Oral Immunotherapy
Starting Young – Breckan’s OIT Journey
Written by Deborah C.
At just over a year old we did what most parents do – give their child peanut butter for the first time. His older brother isn’t allergic and we had no reason to think he would be. Breckan’s first two small bites were uneventful and I thought we were in the clear. I made him a peanut butter and honey sandwich and he LOVED it!! Fifteen minutes later that sandwich would lead to the most terrifying trip to the ER to date. My little boy looked as though he had been attacked by a swarm of bees from head-to-toe and was screaming to breathe. That pivotal day is ingrained forever in my mind, and from that point onward I searched for any sign of hope or treatment for his anaphylactic food allergy.
When Breckan was 18 months old, I came across a Facebook group where someone mentioned Oral Immunotherapy (OIT). I honed in on it immediately. It just made sense, and I knew it was the treatment best suited for Breckan’s deadly allergy. I hit the jackpot, because at the same time I learned of OIT, I heard there was a doctor opening up a private practice in the Atlanta area and I tracked him down and called him immediately. It sounds cliche, but when Dr. Agrawal picked up the phone he changed our family’s life forever! We watched Breckan’s peanut IgE numbers with hope over the next year, but when they shot up and his skin test exploded at 2.5 years old we decided to start OIT asap under the direction of Dr. Agrawal.
Breckan began his OIT journey on October 5, 2015 at 2 yrs, 9 months old. Personally, I find beginning OIT at a young age provides so many benefits! Some of these being little or zero anxiety, being completed before starting kindergarten, earlier protection, and at this age such a young child really hasn’t had to feel much, if any, exclusion due to their allergy. Many parents who are interested in starting their child younger ask “what about communicating symptoms?” I can assure anyone that communication is both verbal and non-verbal. Your child doesn’t have to speak every word perfectly and know a vast vocabulary to complete OIT. You are watching and observing (more like hawk-eyeing) and you will know if there are any symptoms or reactions. Without a doubt, you will know. A parent knows their child better than anyone and even the slightest change in expression can tell you if something is “off.” We had zero issues with communicating symptoms throughout our experience and we did have a handful of them along the way, but nothing that couldn’t be worked through and overcome. I also found that starting young made it easier to control and shape that this is just how things are now. Period. Meaning when it comes to dosing and then the observation period after for Breckan, I just made it into “this is what we do and this is just part of life.” He is one of the most stubborn kids I have met, but by treating this as “peanut medicine” to him it was that – medicine – he ate a meal, he took his medicine, and he knew that meant “calm play” after. Anyone who knows Breckan knows that calm and him do not go hand-in-hand. Active is an understatement. However, I think the term “rest period” with OIT is mis-labeled. Kids do not have to sit still and not move! They can do so many things!! MagnaTiles, Legos, color, paint, use their imaginations to build cities or anything for that matter, play with dinosaurs or their favorite current toy, Star Wars themed toys, and the list goes on and on for all the things Breckan could do during his calm play time. That list doesn’t even include video games or apps on his tablet which we’d sometimes do too. We even dosed during vacations, like on our family winter ski vacation which was very active. Breakfast, dose, calm play in condo, drive to mountain, and by the time he was skiing we were good to go! OIT adapts to your life and you adapt to OIT.
Even being young, it amazed me throughout this process how much Breckan just “got it.” One example was back in February 2016, in an instance that reminded me why we were doing this. We had picked up Panda Express (not for the kids), and to our surprise, Breckan wanted to try the entree. At this point he wasn’t “cleared” to eat any cross-contaminated food yet. We obviously didn’t get any items that contained peanuts, but there was still too much of a risk for him to eat it when it’s a place that serves peanuts like that. We hadn’t brought that food into our house at all in a couple years, but we felt ok doing it now with where he was at with OIT. Unfortunately, we had to explain to him that he couldn’t try the entree. I wasn’t expecting his reaction or I would have never brought it home. He got teary-eyed and very upset that he wasn’t allowed to try it because of his allergy. He kept saying, “but I take my peanut medicine” through a quivering lower lip. My heart just broke for him. I explained that this is why we are doing it, that this is why he is eating more and more peanuts and when he can eat even more, which will be soon, that he’ll be able to try new foods like this. He understood, smiled, and was happy then and said, “I want to see Dr. Agrawal tomorrow.” It probably seems so small to so many, but the exclusion to things like this and gaining freedom to have choices are some of the reasons we went through OIT.
On August 16, 2016, Breckan completed OIT and is now in maintenance! Dr. Agrawal has given him the gift of protection and life insurance in its truest form. I never thought this was possible when my head was swirling after that fateful ER trip 2.5 years ago. Our lives were changed forever that day after being sealed with an anaphylactic peanut allergy diagnosis, but because of OIT we are able to give him the most “normal” life possible without the usual limitations of a deadly allergy. He will never know what an allergy table is like at school, he’ll be able to eat the same birthday cake with all the other kids at parties, he can try new restaurants and new foods (and without having to investigate them first), we don’t have to worry about all the food recalls that are totally out of our control, we have no worries about mistakes made at the hands of others in food service industries, no more reading labels with a magnifying glass, he won’t have to leave a playground because a kid comes with a peanut butter sandwich and I can see it on their fingers as it smears everywhere, he’ll be able to go to overnight camps and field trips without his mom hovering over him (or maybe I still will)…and the list goes on and on. It is really the simple day-to-day things that mean so much and one of the reasons we did OIT! The biggest reason is accidental exposure and preventing a possible life-ending anaphylactic reaction… I would do anything to protect him to the best of my ability from that, but I also want him to be able to live the fullest life possible and thanks to Dr. Agrawal, his staff, and OIT, he can do just that!
If you’d like to read more about our OIT journey, please refer to our blog, “conquering peanut: Breckan’s OIT journey at http://coxfamilyconquers.blogspot.com.
OIT – A life-changing treatment
Pediatric Allergist, Peachtree City, Fayetteville, Marietta, Georgia
OIT – A life-changing treatment
written by Heather B
My daughter Zoe started OIT for peanut in July 2015. She was 6 years old and had a level 6 peanut allergy. Dr. Agrawal was so patient and kind making her and us feel comfortable every step of the way. I was very nervous for her to start OIT but my anxiety over her allergy was increasing, especially at school.
We found out about OIT through a friend who had also started peanut OIT with Dr. Agrawal. She stayed on the first dose for almost a month because of hives but after that it has been smooth. She is now in maintenance 11 months later and the freedom we have gained is invaluable! Zoe can now sit with her friends at lunch, eat kit-kat’s, and have m&m’s! Things that were impossible a year ago. This has been a life changer for her and I’m forever grateful for all the staff and for Dr. A at Freedom Allergy. Anytime I had a concern I could easily reach out to him and he responded almost immediately. I’ve never met a doctor who cares about patients as much as he does. We are looking forward to our final peanut challenge next year and graduating OIT!
My Peanut OIT Experience – From Kaitlyn
Pediatric Allergist, Peachtree City, Fayetteville, Marietta, Georgia, Oral Immunotherapy
My Peanut OIT Experience
– written by Kaitlyn L.
When I first started OIT I was 9. I didn’t really understand how severe my allergy was. All I really knew was that if i came in contact with a peanut I would die in a few seconds. We used to go to Helen in our camper and they had a little shop that served boiled peanuts. I could smell them before I saw them, that’s how allergic I was. When Dr. Agrawal first tested me he told my mom my allergy was really ‘’off the charts’’.
The night before I started OIT I didn’t exactly sleep at all. I was up all night with my stomach killing me. We had to start at the hospital in case something went wrong. Dr. Agrawal told my mom to pack lots of entertainment because it would take all day. The day before I cried all day because I was so scared. I didn’t get that they were trying to get me to eat something they told me not to even get near it my entire life. And now they were telling me to eat it, I didn’t get it. And thats where it all started.
When we got to the hospital I just about squeezed Mr. Bunny’s arm off I was so nervous. I was shaking like crazy. We went back to the room and when Dr. Argawal brought in the first dose I start crying like crazy. When I finally calmed down I took the first bit of peanut solution. I hated the flavor. I had to eat a meal before I came even though I wasn’t hungry. Most people who start OIT make it a lot further than I did. When we got back from the hospital my sister ‘’Kember’’ and grandmother ‘’Nan Nan’’ greeted me with flowers and balloons. After the hugs I went straight to bed. I was super tired.
Every morning at breakfast we talk about the day’s schedule and decide what time is best to take my dose. We choose a time based on my schedule that will give me 2 hours to rest. If I have softball that night, then I usually take it before school at breakfast. But during the summer I can take it later or during lunch since it is so hot outside. I have to eat a big meal before I take my dose and then I take my pills. These pills make sure I don’t get sick. I eat the peanut(s) and drink lots of water so my throat doesn’t get tingly. Then I usually draw or watch t.v. and rest until my two hour rest period is over. I do this every single day. It kind of gets old. Every two weeks I updose to a higher level of peanuts at Dr. Agrawal’s office. Before every updose, my sister, my mom and me always estimate how much peanut I will go to at the appointment. Both, Ms. Danielle and Ms. Carla are super sweet.
It is really cool now, but when I started it didn’t seem very important. But now it’s changed everything. My school experience, my food experience, it’s even made me and my family closer. I’ve almost made it to maintenance which is super exciting for me and my family. Because I was off the charts when I started but now I’m eating 4 peanuts! And, I get it is SUPER scary when you start. But it gets a lot better. I’m now allowed to eat at bakeries, candy stores, and many more things I can’t even count that I could NEVER do before. Thanks so much Dr. Argawal! He is the very best and sweetest allergist there is. He has inspired me to become an allergist when I grow up.
From Peanut Particles to Actual Peanuts
Pediatric Allergist, Peachtree City, Fayetteville, Marietta, Georgia
From Peanut Particles to Actual Peanuts, Our Family’s Peanut OIT Journey with Dr. Agrawal
written by Jennifer L.
Kaitlyn has a life-threatening peanut allergy that truly dictates every aspect of her daily life. Her allergy is so severe, that she will go into anaphylactic shock if she ingests even the smallest particle of a peanut. This includes ingesting any product that has been produced at a facility that also produces peanut products, being touched by someone who has recently eaten a peanut, and even airborne particles such as those recirculated in a commercial airplane. Daily life is hard, and arguably harder on a such a young girl of 11.
Kaitlyn has many limitations but is overcoming them with dignity and strength. She is taking action to change the way she lives her life. In March of 2015, Kaitlyn started peanut oral immunotherapy (OIT) treatment with Dr. Agrawal in hopes that it will desensitize her immune system and potentially save her life.
OIT is a journey, it isn’t quick or easy. Kaitlyn had to put all of her fears aside and ingest the very food that she has been warned about her entire life. She was terrified at first and then slowly warmed to the idea of going in for the initial appointment. Dr. Agrawal was fabulous with her and very understanding of her fears.
We moved forward with scheduling our initial appointment to begin OIT. Other than the nerves, it was relatively easy. We were armed with entertainment and foods to help coat her stomach. She didn’t make it to the highest dose that day because she was having hives, stomach pain and strange bumps on her tongue that came up after the third of fourth dose. We went home with her liquid dose and started the life changing process of OIT dosing once a day every day with a two hour rest period to ensure her body doesn’t fight peanut. Kaitlyn had a lot of nerves for months but she continued to take her dose.
We slowly continued to increase until September when everything came crashing down. Kaitlyn got sick and had horrible stomach pain, we decreased her dose more and more and she still had reactions so we finally had to stop. Kaitlyn felt horrible for weeks. After endless blood work, ultrasounds, and doctor appointments with Dr. Agrawal and our pediatrician they concluded that she had a stomach virus that was further irritated by her peanut dose and possibly a stomach ulcer. Our family was crushed to stop OIT but assured by Dr. Agrawal that we would begin again when she was feeling better.
We did start OIT again but had to go back to a much lower dose. Kaitlyn was beyond terrified and highly discouraged by starting the process over. Dr. Agrawal made several attempts to encourage her and get her to take her dose. It was agonizing to start over the process that we had worked so hard to get through. As of June 2016, Kaitlyn has successfully increased to 4000mg (roughly 4 whole peanuts). It’s absolutely amazing the freedom for her and our family to eat at restaurants we’ve never had the luxury of eating at, or consuming foods that we never dreamed of, and to relax just a little while she is at school or a playdate. Our goal is 6-7 peanuts to secure her safety.
Every little girl has big dreams. Kaitlyn’s big dreams are ones that may seem small to the average kid; to fly on an airplane, to be able to eat a cookie cake with her friends, to be able to attend sleepovers, and to not have her Mom hover so closely. The risk of contamination was too great for her to enjoy birthday cake, cookies, or most any food that her parents couldn’t verify were 100% safe. Being left out of social functions and school parties has taken its toll on Kaitlyn emotionally. Kaitlyn’s big dreams are to “fly to Paris,” to eat at the Great American Cookie Company and to one day become an allergist! And, thanks to Dr. Agrawal and OIT her dreams are now becoming reality!
We keep a blog about our OIT journey kknaughtynuts.blogspot.com where we share all of the trials and triumphs so feel free to read more details of Kaitlyn’s inspiring OIT journey.
A Family’s Journey from India to Pursue Food Allergy Treatment
Pediatric Allergist, Peachtree City, Fayetteville, Marietta, Georgia
It has been difficult for the Kumar family raising a daughter with food allergies in India where food allergies are not common or accepted. When Laxmi was five months old, her parents discovered she was allergic to certain foods when her face swelled up, when she developed hives, and when she projectile vomited her baby cereal. After testing, they uncovered the extent of her food allergies: she was allergic to milk, egg, wheat, peanuts, and all tree nuts. Any exposure to those foods would result in an allergic reaction. It was difficult to manage all the allergies in a country where food allergies are not prevalent. As a result, Laxmi’s mom chose to stop pursuing her PhD in Biotechnology to stay home and care for her daughter. She decided to homeschool her daughter and make each meal from scratch.
However, Mr. and Mrs. Kumar were intent on finding treatments or possible food allergy cures for their daughter. Through online allergy support groups, Mrs. Kumar discovered Oral Immunotherapy (OIT), a treatment that desensitizes the body to a food allergen by daily ingestion of the food in increasing amounts. After thorough research, they believed this treatment was the path they felt was the safest and most effective way to tackle Laxmi’s allergies to help her live a life without the restrictions of food allergies.
Unfortunately for the Kumar family, OIT is not offered in India. Therefore, after much consideration and planning over five years, they decided to travel to the United States to pursue OIT. Out of the 60 OIT allergists available in the United States, they chose Dr. Agrawal at Freedom Allergy in Peachtree City, Georgia to be their OIT allergist. They researched and interviewed various other allergists, and felt that he was the best doctor for them due to his patient nature, knowledge, availability, and concern for all his patients. With careful planning, they have moved to Georgia to pursue OIT treatment for 3 months. Their goal is to return to the U.S. several times over the course of the next year to complete OIT for all of Laxmi’s allergens, and for her to be able to live a freer and safer life.
Laxmi is a courageous girl as she is dosing daily with her known allergens. She is currently consuming a total of 0.24 ml of milk every day, an amount that could have caused anaphylaxis in the past. When asked what she most looks forward to eating, she says she wants to eat ice cream, cakes, and chocolates, just like any regular kid.
This family made the move to a different country, to an unfamiliar city, with no friends or family nearby, to secure a better life for their daughter. They chose the best doctor for their child, and they are excited for the future.
** names have been changed for the privacy of the family