Post peanut OIT update on Soren and Tessa

SorenTessaBlizzardsMarch 29, 2015:

My kids, Soren (age 14) and Tessa (age 12), underwent peanut oral immunotherapy (OIT) with Whitney Molis, M.D. in Des Moines, Iowa for six months starting on July 8, 2013. Soren was 12 years old and Tessa was 10 years old at the time they underwent peanut OIT. On January 3, 2014, they were Dr. Molis’ 100th and 101st patients to graduate from her peanut-desensitization program. I describe the full story here.

Many parents considering peanut OIT for their peanut-allergic children ask me how peanut OIT was for our kids, and how they’re doing now. Bottom line: peanut OIT has been life-changing for our family. Although undergoing treatment was a big commitment, requiring us to drive many hours to and from our kids’ weekly peanut-updose appointments for six months, it was worth it. Soren and Tessa agree.

Peanut OIT is a Treatment, Not a Cure

Keep in mind that peanut OIT is not a cure for peanut allergies. It’s a treatment. Soren and Tessa may always be allergic to peanuts and have to take daily peanut doses to maintain peanut desensitization. However, they’re successfully consuming their doctor-prescribed peanut doses everyday, and their blood levels to peanut continue to decline toward non-allergic levels of less than 0.35 dramatically.

  • Before undergoing peanut OIT in July 2013, Soren’s blood level to peanut was 88. Six months post peanut OIT, his blood level to peanut went down to 24. One year post peanut OIT, Soren’s blood level to peanut started to climb a bit to 36. Since he was tolerating his doses well, the doctor prescribed more peanuts for Soren to consume during his morning and evening peanut doses. As a result, his blood level to peanut is starting to go back down again (to 35 as of Sept. 2015 and to 20 as of Aug. 2017).
  • Before undergoing peanut OIT in June 2013, Tessa’s blood level to peanut was more than 100. Six months post peanut OIT, her blood level to peanut went down to 35. Nine months post peanut OIT, her blood level to peanut dropped to 28. One year post peanut OIT, Tessa’s blood level to peanut started to climb a bit to 29. Since Tessa wasn’t tolerating her doses perfectly well 100% of the time, the doctor increased her two-hour post-dose downtime to four hours. She also eliminated Tessa’s evening peanut dose and prescribed fewer peanuts for Tessa to consume 30 minutes after taking a Zyrtec every morning. These steps were intended to teach Tessa’s body that peanuts are not a threat. As a result of these tweaks to Tessa’s peanut-desensitization maintenance regimen, her blood level to peanut is starting to go back down again, too (to 26 as of Sept. 2015 and to 15 as of Aug. 2017).

Soren and Tessa’s post peanut OIT blood test results represent a dramatic reduction in their peanut allergy levels. We’re hoping their blood levels to peanut continue to decline to normal levels of 0.35 or lower. To maintain peanut desensitization, they’ll gladly continue to consume peanuts everyday, indefinitely. I’ll continue to report their blood levels to peanut as they become available. Check back in August, 2016.

Peanut OIT is Risky (But Safer than Not Getting Treated)

After each peanut-maintenance dose, Soren and Tessa must strictly adhere to a doctor-prescribed period of rest, which we call “downtime.” During their downtime, vigorous activity, showers (altering their body temps) or stress/tantrums are not allowed. Their bodies need the post-dose rest in order to successfully cope with the peanut doses that tax their systems. If they exert themselves too much within their doctor-prescribed post-dose downtime periods, we know from experience, Soren and Tessa will have anaphylactic reactions.

Peanut OIT = Freedom

Peanut OIT has dramatically improved the quality of Soren and Tessa’s lives. Thanks to Dr. Molis and peanut OIT, they’re now free to eat foods containing peanuts, eat foods made on equipment or in a facility that processes peanuts and go places where peanuts are served without worry, such as school, birthday parties, restaurants, friends’ and relatives’ houses, sporting events, extra-curricular activities and field trips.

Peanut Oral Immunotherapy Requires Vigilance

Although peanut OIT has been great for our family, it’s not for everyone. It’s not a treatment to be taken lightly. Given the risks involved in undergoing peanut OIT, I can understand most doctors’ reluctance to administer the treatment. At the same time, it was frustrating that the closest doctor to us who’d administer peanut OIT to Soren and Tessa was five hours away from our home. Soon after our kids graduated from peanut OIT, Dr. Richard Wexler in our hometown of Minnetonka started offering a version of peanut OIT, which he calls Food Allergy Risk Management (FARM). Read more about Dr. Wexler’s FARM approach to peanut OIT.

Understand that if you’re considering peanut OIT for yourself or a loved one, you must be vigilant:

  • Strictly adhere to your doctor-prescribed daily peanut-dose regimen.
  • Take doses on time, every day.
  • Don’t exercise or perform other anaphylaxis-triggering activities for your doctor-prescribed amount of time after every dose. This may mean dropping out of gym classes and sports teams to accommodate treatment.
  • Check in with your doctor when allergic reactions occur, as well as for downdosing instructions during times of illness or other changes in routine.
  • Have your life-saving medication up-to-date, at room temperature and on hand at all times.
  • Don’t be afraid to use your epinephrine when you need it. You may need it at least once during peanut OIT, as well as while you’re on post-OIT doses to maintain peanut desensitization.
  • Undergo peanut OIT in partnership with a qualified peanut OIT doctor only. Don’t treat yourself or your peanut-allergic children without your peanut OIT doctor’s strict supervision. Our kids started out treatment at microscopic doses of peanut that were measured in a lab, then gradually worked their way up to 21 peanuts, which they consumed in the doctor’s office on peanut OIT graduation day.

Peanut OIT is Worth it!

Go into peanut OIT knowing that, although the treatment has the potential to dramatically improve your quality of life and safety around peanuts and peanut-containing foods, peanut OIT is not a cure for peanut allergies. Once you graduate from peanut OIT, you still need to take peanut doses everyday to maintain desensitization. You’re still at risk of having anaphylaxis after your peanut doses. This means you’ll still need to carry your life-saving medication at all times after undergoing peanut OIT. But, if your peanut OIT success is similar to our kids’ peanut OIT success, you’ll feel — and be — much safer around peanuts.