Hi from Bergen County, New Jersey!

Hi, I am in the midwest, but I grew up in Bergen County, and was just visiting my parents there for Thanksgiving.  My two year old son has FPIES to about 12 different foods, including dairy.  One of the things I love about the metro area is all of the Kosher Pareve labeled foods!  When I visit, I can get all kinds of frozen yummies that I can't get out in Minnesota cheese country.  Did it take you a long time to get a diagnosis for your son?  Most of the knowledge about this condition seems to only have recently come out and become more common.  Even now, some moms report that it took months for a diagnosis.  I was really lucky, because the first doctor I took him to had heard about FPIES.

What does your son use as a butter replacement?  We have found soy-free earth balance to be a great sub.

Hi,

 Nice to meet you.  We use Organic Earth Balance as a butter sub.

 

Sorry that your child is FPIES to so many foods.  Hugs!

Just to let you know, never go by the kosher parve designation.  It is only meant for religious purposes and not for milk allergies.  Here is more information:

http://www.kidswithfoodallergi...ourcespre.php?id=100

  • Kosher labeling in general cannot be used as a guide to determining whether a product does or does not contain milk.¹ However, many parents find they can save time in the supermarket by simply assuming that foods marked as "Kosher dairy" are not safe for a dairy-allergic child.
  • A dairy-allergic person cannot rely on the Kosher Pareve designation or the lack of a Kosher Dairy designation in determining the safety of a particular food. This is because it is possible for a food to contain a trace level of dairy contamination (something which might be a problem for a dairy-allergic child) and still be considered "dairy-free" from the standpoint of the Jewish dietary laws.
  • Kosher labeling does not address cross-contamination issues.  Therefore it is possible that traces of allergens may be in Kosher foods, just like any other manufactured foods. As always, be sure to read the ingredient statement on every item purchased and contact the manufacturers to determine its safety just like any other food you would buy.

 

- See more at: http://www.kidswithfoodallergi...sthash.7PH6z7Eh.dpuf

 

Hi!

Hoping that your son has outgrown his FPIES.

My son is now 26 years old.  He still has FPIES to milk.  Since he hasn’t had a food challenge for a few years now....we are thinking of him having a food challenge again.  We are searching for an adult Dr. that has experience with FPIES adults.  So far, we haven’t been successful in finding once since FPIES for most is an allergy in young children.

Hi! 

My son did outgrow it just before he turned 5. We go to Dr. Jeffrey Weiss of Weiss medical. He has offices in Riverdale and Paramus. I highly recommend him. He has a lot of FPIES patients and has done many food challenges for FPIES as well. I trust him completely. Not sure how old his oldest FPIES patient is but it’s worth a shot. He sees all ages for allergy as I am a patient myself for seasonal allergies and chronic sinus infections. Good luck!! 

Thank you so much! Does your son take probiotics? Not sure if this helps any but my son failed his challenges before we started giving him probiotics and then once he was on them for over a year he started passing the challenges. We also participated in the FPIES study for kids who outgrew fpies. We needed to send in a stool sample as they are studying the gut microbiome and his sample came back with having 6 elusive bacteria so rare they aren’t studied. Not sure if that is the fpies connection but I say probiotics are worth s shot! He’s been on them since. I started with culturelle because it’s milk and soy free. 

Yes, culturelle is milk, soy and gluten free. At least the kids one is but I believe the adult one is as well. I put him on it myself. I was actually told by a different allergist to avoid probiotics because they can cause a reaction but all she did was instill more fear in me. I also had a hard time finding any doctor familiar with FPIES until I found Dr. Weiss. Both my kids were allergic to milk and my son was also soy and my daughter tree nuts and they have never had a reaction to culturelle. I started with a very tiny amount and worked my way up with them just in case and all was well. 

Add Reply

Likes (1)
MK
**The FPIES Foundation does not provide medical advise, diagnosis, or treatment. ******THIS INFORMATION HAS NOT BEEN REVIEWED BY THE FPIES FOUNDATION'S MEDICAL ADVISORY BOARD.********* Terms of Use: http://www.thefpiesfoundation.org/index-9.html
×
×
×
×