Hey guys! Sorry I have been absent for so long. In previous posts I talked a bit about oral desensitization and I thought I would share our OIT (oral immunotherapy) journey with you. Kenna was born allergic to milk and eggs. Over time, and with the recommendation from our allergist, Kenna was able to outgrow her milk allergy by gradually increasing her milk intake. It took years, many years longer than I hoped, but by the time she was 9, she passed an oral food challenge for milk. We were thrilled.
This got my brain turning about how we may help the process of outgrowing her egg allergy. We never attempted this at home because her IgE (anaphylactic) numbers were off the charts. It was too dangerous to start the process without the help of an expert. I had researched different treatment and alternative medicine options (like NAET and OIT). After attending seminars and looking at success rates we decided to go with OIT.
OIT is a growing practice with outstanding results. However, not many allergists specialize in it. We are fortunate enough to live 15 minutes away from an amazing OIT allergist. We met with Dr. Jones, completed the required tests and examinations and were put on the waiting list. After 6 months, we got the call that our turn had come and we would start the OIT process. We were ecstatic (and nervous). Day one and Day two were the most intense appointments of the process. Kenna and I sat in a room for 6 hours while she is given a dose of egg (very, very diluted) every 20 minutes or so. On day one, Kenna started having stomach pain only a few doses in (.2 ml). So we stopped the process and started again the next day. On day two, Kenna started her dosing where she left off the previous day. We only got a few more doses in before she started having reactions (stomachaches) again. The process was stopped again (at 2 ml). During the week, Kenna would continue to take the 2ml of diluted egg powder (in Tang), twice a day and would increase her dose at her next weekly allergist appointment. Slowly and steadily she would build tolerance.
There are a lot of restrictions/guidelines that go with the OIT process. The patient is not allowed to increase their heart rate or body temperature one hour before, and two hours after taking a dose. That means no exercise, showering, sleeping, etc. The patient also needs to take the dose when their stomach is full of carbs and swish and swallow immediately after taking the dose (this helps with oral itch). It seems intense, but over time, we got used to the schedule. About three months into the process, Dr. Jones recommended that we go to once a day dosing (instead of twice daily). Studies had not shown that twice daily is more advantageous over once a day. And let me tell you… once a day relieved so much stress! This allowed for Kenna to do sports in the afternoon, eat dinner away from home (and not take a dose with her), and less persuasion (aka: fighting) over taking the dose.
Overall, we had a pretty uneventful journey. Almost every week Kenna was able to increase her dose as scheduled (with only one week maintaining the current dose, due to a small reaction). Because Kenna started out at such a small amount (about 10 weeks behind a typical threshold) the process took longer. For about 3 months, Kenna took a diluted dose of egg. Then she was able to graduate to whole egg powder (starting at ¼ tsp) and eventually working her way up to a full egg (2 Tbl). I wanted to shout from the roof tops the day Kenna graduated the OIT program. She ate a large scrambled egg with no reactions! I was amazed at her determination and bravery. Daily dosing and weekly appointments were time consuming, but as a family we were committed to making Kenna safe.
During the process we met lots of amazing families on the same journey (although different allergens). Many came from hours, states, and even countries away. You start to feel a close bond with these families, as you see each other’s weekly successes and struggles. Now that Kenna has graduated from the program, she still needs to maintain tolerance by eating a full egg (powdered) every day. Until her body starts to recognize that egg is no longer a threat, she will still need to maintain the same restrictions after dosing (not increasing her body temperature or heart rate for 2 hours). Typically, you will see the IgE numbers come down between 6 months and 5 years after graduating the program. Kenna has been desensitized, not cured of her allergy, and that is something that is important to remember. She still carries an Epi-pen and is cautious about “free-eating” egg when she is ill. Otherwise she has been given the green light to try new foods (like donuts, cookies, crepes, school lunch, etc.) and she is thoroughly enjoying her new freedom.
Do you have an allergy and would like to know more about OIT? It works! The hardest part was getting started. It changed our life for the better.