February 21, 2011, 9:30 AM
Are you the parent of a child with food allergies who thinks the general population doesn’t understand your plight? How do you feel about the rules in your child’s school regarding peanut-free tables and celebrations with limited treats?
On Monday, Feb. 21, Dr. Jeffrey Factor, who is pioneering a new treatment for peanut allergies called Oral Immunotherapy, told us about new medical developments and what the future holds.
9:16 Courant.com: Hi Everyone! I’m Sarah Cody, Fox CT and reporter and Mommy Minute columnist/blogger for The Hartford Courant. We’ll begin our live web chat about food allergies in about 15 minutes. We’ll be talking with Dr. Jeffrey Factor of The New England Food Allergy Treatment Center.
9:25 Jeffrey Factor MD: Hi Sarah,
I am online.
Jeff Factor
9:25 Sarah Cody: Great! I was just getting nervous! We’ll get started in a few minutes.
9:28 Jeffrey Factor MD: I don’t need to know about any of these other icons besides ‘send’ do I??
9:28 Sarah Cody: Nope.
9:29 Jeffrey Factor MD: Great, I’m ready to go!
9:30 Sarah Cody: OK! Let’s get started! First, Dr. Factor, give us all an overview of what exactly Oral Immunotherapy is….
9:32 Jeffrey Factor MD: Thanks, Sarah. Oral immunotherapy is a process of having a patient ingest/eat small amounts of the food they are allergic to and incrementally increasing that amount until they become ‘desensitized’.
9:33 Sarah Cody: How many patients have you been helping at the new center? According to Dr. Mendelson, you haven’t yet encountered any serious situations during treatment?
9:33
Comment From Betty
Does Dr. Factor think that all schools should be peanut free zones
9:34
Comment From Sarah L.
At what age do you recommend the Oral Immunotherapy? My 2 yr old son was recently diagnosed with a nut allergy Is he too young? Thanks!
9:34 Jeffrey Factor MD: I’m not a big fan of peanut free schools. Since the risk is really from ingestion not inhalation of peanut butter I think it is not really necessary. Also, may create a false sense of security.
9:34 Sarah Cody: Great questions, Betty and Sarah. Thanks for participating!
9:35
Comment From Diane
Have you found that age is a factor in the success of the treatment?
9:36 Jeffrey Factor MD: Oral immunotherapy could be started at any age. However, we prefer to start at an age which children can describe symptoms if they occur, and our protocol is enrolling children 5 yrs of age and older.
9:36 Sarah Cody: Dr. Factor: Insurance doesn’t cover this therapy, correct? How much will it cost a parent?
9:37
Comment From Betty
Does Dr. Factor know of any food companies that do cater to those with p’nut/tree nut allergies that he could share with us.
9:37 Jeffrey Factor MD: Excellent question about success and age. No one knows yet. That is one reason we are doing this investigation
9:37
Comment From Julie
Doesn’t the level/severity of the allergy determine the success rate of this type of therapy?
9:38 Jeffrey Factor MD: Back to Sarah’s initial question. We have enrolled 35 patients so far and all are still under treatment. Fortunately no severe reactions of any kind so far.
9:38 Sarah Cody: Insurance? Severity level?
9:39
Comment From Sarah L.
Do you treat multiple food allergies(my son is allergic to nuts, soy, and eggs…so far…)? Or one at a time? Thanks, again!
9:39 Sarah Cody: Good question, Sarah. Dr. Factor: are there any future plans to help patients with egg and dairy allergies?
9:40
Comment From Ben
Is this treatment used for egg allergies also? What is the success rate for the treatment. Our daughter is 8 and her egg allergy has gotten worse over time.
9:40
Comment From Julie
How severe are the levels of peanut allergy in your 35 test patients Dr Factor?
9:40 Jeffrey Factor MD: Insurance does not cover these procedures at this time b/c not standard of care.
So far we do not see that severity affects success of this procedure. We have a number of pts w/hx of pretty severe rx.
9:40
Comment From Stephanie
Will oral immunotherapy be available to those with severe tree nut allergy?
9:41
Comment From Betty
Dr. Factor is a child with p’nut and tree nut allergies ever able to out grow these allergies on their own?
9:41 Jeffrey Factor MD: Food companies-yes. One or two locally. BethieMac and others One good one in NH check online
9:42
Comment From Julie
What is the average cost of this type of therapy since insurance will not cover it.
9:43 Jeffrey Factor MD: Regarding tree nut allergy, I would like it to be b/c I have severe nut allergy. But not yet-peanut, egg and milk so far. We’re hoping to treat egg allergic children next. When? No sure, want to get more info on our PN studies.
9:43 Sarah Cody: Thank you, Stephanie, for writing in. I got your email!
9:43 Jeffrey Factor MD: The cost of entire procedure, testing, treatment is $3000.
9:43
Comment From Teresa
I’m the other Mommy Minute blogger. I just want to point out that this is for people with peanut allergies only, not for people with tree nut allergies, correct? The column mentioned a girl “allergic to nuts” who is participating.
9:44
Comment From Diane
How is the therapy scheduled? Do you have to go to the office seven days a week?
9:44 Jeffrey Factor MD: Regareding outgrowing these food allergies-unlikely , about 15-20% peanut, 9% tree nuts
9:44 Sarah Cody: Good question, Diane. How exactly does the therapy work, Dr. Factor?
9:45
Comment From Julie
My son is off the charts with his peanut allergy level…so if what you are saying is true then he has just a good a chance of overcoming this allergy as someone level 3 or below? I find that hard to believe
9:45
Comment From Stephanie
Thanks Sarah! Hello Dr. Factor!
9:46 Jeffrey Factor MD: The treatment works by ‘desensitizing’ to the food, much as the process of allergy shots for inhalant allergy. The immune system is turned off or way down to these specific allergens
9:47 Sarah Cody: Your nurses crush peanuts and put them in applesauce or pudding, yes? How long is the patient monitored? How many days do they come in? Total therapy is 24 weeks and/or 12 visits, yes?
9:47
Comment From Julie
I still would like to know how many of the 35 patients you are “testing” are off the charts with their peanut allergy. Also, how often and long does a patient have to continue this therapy?
9:47 Jeffrey Factor MD: Children with very high blood tests (Immunocap or RAST) tests are much less likely to outgrow their allergy.
9:47 Sarah Cody: Julie’s question?
9:47
Comment From Kerry
My son doesn’t even like the taste of peanut. (how I discovered his allergy) Is the amount so small that he wouldn’t taste it?
9:48
Comment From Betty
What number on the RAST is considered to be high
9:49 Jeffrey Factor MD: Patients are observed duringf the first day for approx 6 hrs-given PN every 1/2 hr. At sybsequent visits they are given 1 dose and observed for 2 hrs. Then will receive that dose at home daily for 2 wks and return for a higher dose
9:50 Sarah Cody: I saw the nurses mix up the pudding/a-sauce. I don’t think your son would taste it, Kerry. At least not at first.
9:50
Comment From Julie
How long does the therapy have to continue? Or is that an unknown at this time. Does that factor into the $3000 or is it additional charges based on duration,
9:50 Jeffrey Factor MD: The RAST values that are considerd high are greater than 7-however there are some patients with very low numbers that can be severely allergic as well. The numbers only tell us about the liklihood of recting no severity.
9:51 Sarah Cody: Dr. Factor: Once a child goes through this therapy, do you expect the “tolerance” to last forever? Or, is this is a short term solution that must be continually refreshed?
9:51
Comment From Guest
My 6 year old has gotten very leary of eating out in restaurants lately, due to her peant allergy. We have assured her we have checked first, but she at times won’t eat at all unless we bring her something in. Just curious if any other parents have similar situations
9:51 Jeffrey Factor MD: Regarding taste-w/ early treatmentss amt is so small no taste-children feel more assured as the amt is increased w/o anything happening.
9:53
Comment From Bob
How many of these 35 patients have prior experience using an EpiPen / emergency room treatment for ingestion of peanuts or tree nuts?
9:53 Jeffrey Factor MD: Sarah-We don’t know answer to that for sure-right now we’re focused on desensitiz-ie not likely to react while on treatment-tolerance (cure) being studied-but realistically most pts don’t want to be able to eat PB and J’s, just security re accid ingestion
9:53 Sarah Cody: We should point out that this treatment is experimental and that some experts say it is still somewhat unclear. But, Dr. Factor: do you believe it will change the future for peanut allergy sufferers?
9:53
Comment From Betty
How often does a child get the RAST done and if the levels continue to increase what can be done for them before the age of 5
9:54 Jeffrey Factor MD: Many children worry about eating out or at other’s homes even with reassurance from others
9:55 Sarah Cody: When I interviewed Dr. Mendelson at the office, he said this is one of the most exciting times in his career. You are the only group offering this sort of therapy in a private practice setting…anywhere in the country?
9:55 Jeffrey Factor MD: I think this therapy holds the greatest promise of all treatments out there-there is alot of research data and although some feel not ready for use-done the right way with proper precautions we are excited about it’s success
9:56 Sarah Cody: Just to reiterate, you aren’t doing this so that a kid can eat a PB&J….you aim to build their tolerance against a scary reaction due to accidental ingestion, yes?
9:56 Jeffrey Factor MD: As far as we know there are no others, except a group in Texas I believe, doing this outside of a hospital research center
9:56
Comment From Julie
@ guest…my son also does not like to eat out at restaurants and he is 11. Trust is a huge issue for kids with food allergies. Imagine having to depend on someone you dont know to keep your food safe. Especially if they dont understand fully. Scary stuff. All we can do is support them. But I cant even imagine what goes through their minds when the food gets placed in front of them.
9:57 Sarah Cody: Very scary.
9:57
Comment From Betty
Dr. Factor does it mean that you have to be extremely careful with products that are manufactured in a facility that also produces p’nuts or is that not a real problem for p’nut allergy sufferers making it only ingesting the p’nut the actual problem.
9:57 Jeffrey Factor MD: Correct, desensitize to protect against accid ingestion with continued treatment, long term cure? we don’t know yet
9:58 Sarah Cody: I spoke with Dr. Mendelson about why the number of people diagnosed with peanut allergies has doubled over the past decade. Can you weigh in? Very interesting.
9:58 Jeffrey Factor MD: Someone w/ a PN or tree nut allergy should avoid products with warnings such as mentiuoned, there often are measureable amts of contaminat, enough to cause a severe reaction, who knows??
9:59
Comment From Philip
Since the long term efficacy of the treatment is unknown, do you have plans to monitor your 35 trial participants after the study?
10:00 Jeffrey Factor MD: No one sure why such an increase in PN allergy?
Maybe we are waiting to long to introduce them to children-in countries where given to infants (PN snacks) PN allergy is rare.
10:00 Sarah Cody: Great question, Philip.
10:00
Comment From Julie
I guess I am confused as to the length of this therapy? How long have you been doing this and how long do you think a person may stay “desensitized”? How do you know?
10:01
Comment From Laurie
please confirm the total amount of time from initial visit to completion of study. Six months or is it actually 2 years?
10:01 Jeffrey Factor MD: We plan to follow in study for 24 months, we have not determined our procedures beyond that, however, would not send those pts of on their own w/o specific recommm
10:02 Jeffrey Factor MD: We began treating pts 11-10, goal to reach maintenance dose is 4-5 months, then continue to follow home dosing for 24-mths, we have 4-5 pts half-way to maintenance.
10:02 Sarah Cody: Dr. Factor: This is a lot of money to spend if a parent cannot be assured that his/her child will be able to tolerate peanuts longterm. Why do you think it’s worth it?
10:02
Comment From Julie
There is no long term plan for this??
10:04
Comment From Laurie
Does maintenance dose vary from patient to patient? What is the goal maintenance dose?
10:05 Jeffrey Factor MD: The success in studies has been very high, we have been very encouraged so far, there are no guarantees of success-cost necessary b/c we have no outside funding-grants, etc. People will spend over 2x as much for braces-for peace of mind regarding PN exposure we think it’s worth the expense-hopefully down the road insurers wilol cover
10:05
Comment From Betty
If my child went through this treatment program and was able to tolerate 5 peanuts would he have to continue to eat this amouont daily in order to maintain the tolerance level?
10:06
Comment From Guest
As a classroom teacher, I do not allow families to bring in food to celebrate birthdays/holidays etc. I made this decision based on the number of children with allergies and the various allergies they suffered from. Some families were a little disappointed with this decision. Wondering what others thoughts are on this topic?
10:06 Jeffrey Factor MD: Remember this is an investigational protocol, we are helping pts w/ PN allergy, but learning too, we are not sure what the long term schedules for treatment, monitoring will be RIGHT now
10:06 Sarah Cody: Getting back to the high diagnoses over the past ten years….as a mom, I find this very frustrating! Will pediatricians be reconsidering their recommendations to new parents re: introduction of peanut butter? I just don’t remember this being an issue when I was a child…..
10:07 Jeffrey Factor MD: Maintainence dose approx 383mg of peanut-amt of protein in 2-3 peanuts, we hope al;l pts reach that dose
10:08 Sarah Cody: Classroom Teacher: As a mom, I think this is an interesting issue because I hear both opinions. Yes, some parents complain and say the larger number of kids should eat what they want….but most people are ready to comply with anything that has to do with the safety of a child.
10:08
Comment From Genevieve
What university/hospital is monitoring your results? If you are conductong a study? It should be sponsored by someone, right?
10:09 Sarah Cody: Good question, Genevieve. Dr. Factor?
10:09 Jeffrey Factor MD: If reaches 5 peanuts w/o reaction-your child will need to maintain somne daily amount of PN, however, studies being done have shown that some children 1/4 can become tolerant (cure)
10:09
Comment From Julie
In your opinion, are you thinking a patient will have to do some type of maintenance for the rest of their lives?
10:09
Comment From Genevieve
BethieMac sadly closed last year.
10:09
Comment From Betty
I agree with Sarah as I was growing up PB&J was a household staple that we always had. Can’t understand why there are so many kids with allergies. Can a pregnant woman do something while pregnant to possibly avoid this allergy altogether for her unborn child.
10:10 Sarah Cody: Ooh. Great question, Betty. I’ve been reading about peanut butter during pregnancy….
10:11 Jeffrey Factor MD: Sarah-
Yes Pedi have been informed, from AAP, no longer to adhere to waiting to 2-3 yrs, etc. They haven’t made any recomm b/c not know yet, but my assumption is w/ongoing studies will have a better idea when to introduce is best
10:11
Comment From Philip
Do your younger patients find the therapy scary?
10:12 Sarah Cody: I watched a few kids eat their pudding/applesauce, Philip. It didn’t look scary, the kids didn’t seem scared…the nurses were great. Office is bright and friendly. I think the parents are the most nervous!!
10:12
Comment From Julie
Cure is a pretty major claim… with no long term research results how can you be so sure?
10:12 Jeffrey Factor MD: We have an IRB which as an oversight board which reviewed an approved our protocol much as is done at medical centers-they had to be assured that we were using sound, safe, practices
10:12
Comment From Laurie
What is the average age of the 35 patients in the study currently?
10:12
Comment From Julie
My 11 year old thinks its very scary
10:13 Sarah Cody: Aaah. Good to know, Julie.
10:13
Comment From Genevieve
Hi. Dr. Factor, could you please address my question about the sponsor of your study?
10:13
Comment From Stephanie
My younger child is not food allergic. However, when I was pregnant with her, I was advised to avoid peanuts and tree nuts. Is this still be belief that we need to avoid foods in pregnancy?
10:13 Jeffrey Factor MD: Actually younger kids seem less anxious-
10:13
Comment From Genevieve
Who is Inuit IRB?
10:13
Comment From Donna
As an adult I just found out that I have a sensitivity to p’nuts and I have eaten them all of my life how could this be
10:14 Sarah Cody: Genevieve, some early research re: Oral Immunotherapy was done at Duke University.
10:14 Jeffrey Factor MD: Our staff is great and reassuring, all nurses have kids with food allergies, so they are very understanding
10:15
Comment From Genevieve
Also Dr. Factor, isn’t it a little misleading that your website is a “.org”? You are for-profit, right?
10:16
Comment From Julie
I’m sorry but no matter how understanding your nurses are there is no way they can truly understand what that child is going through unless they suffer from food allergies themselves!!!
10:16 Jeffrey Factor MD: I didn’t say we are seeking cure, and in fact would never make that claim. It appeared from Duke studies with higher doses of PN given than our maintenance daily dose that approx 25% became tolerant to PN
10:16
Comment From Genevieve
Duke continues to researh. As of today, Duke has not declared this method a cure and they continue to accept research participants. And they arent charging $3k to participate.
10:16
Comment From Philip
Are you accepting new patients into the study, or do plan a second round?
10:17 Jeffrey Factor MD: Average age approx 7-9 yrs. Being nervous is not unusual-always welcome to come by center with your child to see center in operation and speak w/parents and kids going thru it!
10:17
Comment From Bob
I applaud the teacher’s policy above to exclude food from the classroom. A big problem is food that is processed in facilities that handle peanuts & tree nuts. We re-read labels constantly to check for this. We always sent in a separate treat for our daughter on those special days (e.g. birthdays) so she would be safe.
10:19 Jeffrey Factor MD: Ther is no ‘sponsor’ we have an IRB (Institut Review Board) named Quorum we ar working with. We use source documents, signed consents/assents/a research coordinator, just as any good study should
10:20 Sarah Cody: This has been a really, really valuable chat. I want to sincerely thank all of you for your intelligent questions and enthusiastic participation. Let’s begin to wind down by getting to the heart of the issue. Dr. Factor: what do you think this therapy means for peanut allergy sufferers? Will their future be positively altered?
10:20
Comment From Julie
Excluding food from classrooms is a double edges sword. On the one hand there is the fact that the child will be “safe” from allergens. On the other hand, the world is not peanut free. Our children with food allergies need to learn to take care of themselves and not depend on others. I hate the fact that this is true but it is. Their first line of defense has to be themselves!!
10:21
Comment From Genevieve
Who do you inten the submit your study results to for peer review?
10:21 Jeffrey Factor MD: I understand someone w/o having allergy themselves not understanding fully, I am an example of that, but our nurses are VERY much in touch with the emotions, worries, etc of parents and patients
10:22
Comment From Julie
Being in touch and living with it are two very different things Dr Factor!
10:22 Sarah Cody: Most of the nurses are moms with kids with food allergies, right?
10:23 Jeffrey Factor MD: Duke does not charge b/c they have abundant grants, we don’t, we need to pay staff, facility, supplies, etc. The ONLY way we can operate and provide this service is to charge patients, it is elective procedure and patients know from outset this is an investigational process,
10:24 Sarah Cody: Finish up by telling us, what kind of a difference can this make in a child’s life?
10:24 Jeffrey Factor MD: We are accepting patients now, our procedures are ongoing, we have no limit in patients
10:25 Sarah Cody: Certainly, many questions still exist.
10:25
Comment From Julie
I’m a mom with food allergies and the DIrector of the Walk program for FAAN (the Food Allergy and Anaphylaxis Network) I deal with parents of food allergies every day but I would never claim that I know what these kids experience everyday.
10:26
Comment From Julie
Sorry…I’m a mom of a child with food allergies…I do not have them myself
10:26 Jeffrey Factor MD: I apprec all questions and concerns and would be happy to discuss if anyone would like-I think this is a significant option for pts w/PN allergy compared to the only other option, strict avaoindance, I think will improve worry, anxiety and improve qual of life of those w/PN allergy
10:26
Comment From Lori
For anyone who doesn’t know Dr Factor, he is a very caring and understanding doctor who has the well being of his patients a priority at all times. $3,000 would be well spent in knowing that if he /she came in contact the reaction could/would be less severe!!! Thank you Dr. Factor for opening this clinic near by so that we can hopefully make our son’s life less stressful!!!!! AND OURS TOO! :o)
10:27 Sarah Cody: It was an interesting point that Dr. Factor made about the cost of this versus the cost of braces. Food for thought!
10:27
Comment From Stephanie
Thank you Dr. Factor! Thank you Sarah!
10:28 Jeffrey Factor MD: Hopefully, signif improvement in child (or adult w/PN allergy) life, we’re measuring it and intend to submit to peer reviewed journal when we have evaluated the data
10:28 Sarah Cody: Wow. What a spirited discussion! Thanks again to all of you….and to Dr. Factor! Any last thoughts, Dr.?
10:28
Comment From Diane
I agree with Lori – Also, thank you so much for providing all this information
10:29
Comment From Laurie
I would want my child to have a competent nurse who can recognize and treat an adverse reaction to the protocol. I don’t need her to have a food allergy as well.
10:29
Comment From Sarah L.
Many Thanks!
10:29
Comment From Lori
aRE THERE ANY SUPPORT GROUPS FOR PARENTS OF CHILDREN WITH THESE ALLERGIES?
10:30 Jeffrey Factor MD: Thank you for the opportunity, as mentioned this is a unique model and we believe we’re providing this treatment in the safest way possible
10:30
Comment From Julie
Where are you located Lori
10:31
Comment From Lori
jUIE i LIVE IN Plymouth
10:31 Jeffrey Factor MD: SUpport group-FAACT in Hartford area, I know a grp in Fairfield County as well
10:31
Comment From Guest
Yes, there is a Hartford area support group sponsored by Connecticut Asthma and Allergy.
10:32
Comment From Bob
http://www.foodallergy.org/
10:32 Sarah Cody: You can read a replay of this live web chat at www.ctnow.com/foodallergies. Share it with your friends! This hour has been chock full of great information. Stay tuned for more Mommy Minute web chats….
Read the whole transcript here
