Tuesday, June 4, 2013

Day 8

June 4th

This morning went fine - this is slowly becoming normal to serve up a small dose of applesauce and "allergy medicine" every morning at breakfast.  Both kids are getting used to this and the commentary on it is less each day.

Q and A time - we've gotten a lot of questions so here's our attempt to answer them.

  • Why did we do this?  We feel that the risk is better taken now in a clinical and controlled setting than later (in school for instance) when we won't be right there to help Patrick take the right steps if he has an accidental ingestion.
  • How did you find out about all this?  We've been following some folks in the Duke/UNC peanut trials, watching for trials for tree nuts US wide, and tracking some of the studies out of stanford.  (wouldn't you hope for a "cure" if it was you!?
  • What are SLIT and OIT?
    • SLIT - sublingual immunotherapy is where they dissolve a small amount of the allergen in a liquid and place it under the tongue.  It is one of the two common methods of administering an oral allergen during desensitization therapy or clinical trials.
    • OIT - Oral Immunotharpy - the allergen is ground usually into a powder and mixed with some very simple food (applesauce is common) - then eaten by the patient.
  • What are you guys doing?  We are doing OIT with one nut (walnut powder) and mixing it with applesuace.  The doses are tiny.  (barely a whiff of powder).  Our protocol is pretty similar to the one for the walnut OIT study at Arkansas Children's. (see link below)
  • Where can I read about SLIT and OIT and what's going on in the news?
    • NY Times article -  Stanford's Dr. Kari Nadeau and multiple desensitization trial
    • Walnut OIT study- Arkansas Children's Hospital - essentially can desensitizing a patient to 5000mg of walnut also help with desensitizing them to a second nut that was not part of the trial. "Dosing begins with a one-day walnut oral desensitization protocol. Starting at 0.1 mg protein and increasing every thirty minutes until a maximum dose of 6 mg is reached or until allergic symptoms develop. After the initial escalation day, subjects achieving at least 1.5 mg and up to 6 mg of walnut protein, will continue daily dosing with dosing build-every two weeks to a maximum dose of 1500mg walnut protein at 34 weeks. A daily maintenance dose (1500mg or the highest dose reached by 34 weeks) will be given for 4 weeks followed by a 5 gram protein oral food challenge to walnut and a 5 gram protein oral food challenge to the second tree nut (at 38 weeks), after which the study will be unblinded. Active treatment subjects will continue on the 1500mg walnut protein daily dose for a maximum of 33 months."
    • Duke Peanut OIT - article on their current results from their peanut trial
    • Spring 2013 newsletter from FARE - has an article on evaluating immunotherapies -  SLIT and OIT.
  • Where are you doing this?  In our allergist's office in the beginning and then at home.  Whenever the dosage is increased we'll be in the doc's office.  Day 1 was the entire day, day 2 a few hours.
  • What's the current dose? We're at 6milligrams right now.  A milligram is a few grains of powder.  It's pretty tiny!  That's about 1/100th of a walnut.
  • What's the desired result?  Initially - just some minimum of protection if he were to accidentally ingest a bite of something with walnut in it.  Long term - we're hoping for true desensitization and retraining his immune system not to over react to walnuts (and later other nuts).
  • Is there a guarantee that this will work?  Simply put, no.  But we wouldn't be going through this if we didn't think it was worth it and would improve his risk and potentially quality of life.
  • Is this right for everyone?  Of course not.  It's scary.  There are risks.  But we feel like the controlled risks are greater than the uncontrolled ones (when he's in school for instance).  The cost is also prohibitive if you're not part of a study (and we are not).  Asthma also complicates being involved in a study and often precludes kids (we fall into this category).  Asthma needs to be well under control or the risks would be much higher.  We couldn't start until we sorted out our asthma issues for several months.
  • What's the timeframe?  Roughly two years per allergen (nut in our case) - so we're looking at potentially 6 years.
  • Why doesn't everyone do this? We can't be 100% sure it will work to the point that he can just eat walnuts one day, it's a crazy long process, it's a lot of work and time, and it's expensive.  It's not an FDA approved treatment yet.  One day...

Keep them coming friends... we'll answer whatever we can :)

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