A parent writes to us: "Wondering if there is any way to be connected to others in the upstate ny area".
what part of the upstate ny area? near the MA border??
We are in Clifton Park, and just had our 2yo diagnosed. We pray hard and have started a baseline. Looking to connect with other FPIES families to help and be helped.
My 6 month old son was just diagnosed last Thursday (3-31-16) with FPIES. We are in Niskayuna, struggling to find a path to start on to help him. Has anyone found any good doctors locally? We are about to start making the trek to NYC to see doctors at Mt. Sinai for help and guidance. Any info or support on where to start is greatly appreciated.
We are seeing Dr Qualia at Albany Med but also have an appt at Sinai. Elecare formula has been a God-send. Child Health Plus covers it at 100% ($1000/month if no insurance) Are you able to still breast feed him? How soon will you be seen at Sinai?
We actually have an appointment with Dr Qualia in two weeks! He is friends with our pediatrician so he mentioned FPIES to him over the phone after my sons third allergic reaction. Dr Qualia is also going to be treating my son for GERD and was first contacted to give our pedi the best medication option to ease that issue until Qualia can see him. Meanwhile, our allergist in Albany confirmed the FPIES as much as you can. Luckily, he has a few other patients with FPIES so he is somewhat familiar. Do you like Dr Qualia? Our allergist wants him to send a referral along with his to Mt. Sinai as a stronger referral? I question if it's needed or if we are wasting time getting an appointment there. When are you going to Sinai and who are you seeing? How long have you been waiting for your appointment? Have you seen an allergist in the area as well? I am still breastfeeding, but with my first child my body only produced until around 9 months so I'm worried I won't make it much longer. Yet I'm trying to do everything I can to go longer. Is Child Health Plus a separate insurance? We have Aetna but I haven't priced anything with them yet as this is all so new. Thanks for responding so quick. Last night I was up a lot with my son and am just ready for a plan and some more information.
Keep the appt with Sinai. Get the two referrals. child Heath plus is available from NY state of Health. Price varies based on your income level. It covers dental medical and vision. Prior auths are a pain. You will need to show failure to thrive or have dr Qualia direct Doctor interview after the Elecare coverage denial. Sadly it's the way things work, don't get discouraged, instead become an advocate.
We see dr Demasi for allergy. Call his office for the Elecare same codes and then sign up to get the Elecare formula from the manufacturer. Use the coupon to order an entire case. It costs $300 per case at CVS normally. Elecare is why our 2yo baby gained 6 pounds in 3 weeks after being failure to thrive
Also, there's charts that other parents have created that show high trigger foods:
We are using these charts here:
Sorry, I meant call dr qualias office for the Elecare codes. Demasi doesn't have them.
Thank you for the information! You are an angel to me right now! We just moved from Atlanta 2.5 yrs ago so I'm pretty clueless in regards to Drs and state programs. How long have you been waiting for your Sinai appointment? I was worried it could take months to see someone. My son isn't failure to thrive right now (thank goodness). It helps he was a big baby at birth, (9 1/2 lbs). We are starting weight checks with our pediatrician to watch growth here on out as he's a very active little guy.
Thanks for the charts. They are a great help as I seriously had no idea what to do first. My son has eaten apples with success and is on day 3 of peaches per the allergist recommendation. Yet he didn't give me much more than that to start with other than "feed him fruit". I plan to use those graphs after peaches to decide on our next move and am going to extend out his trial periods as I have realized through research online that his trigger time frames are on the long side.
I am jumping into the advocate role quickly. My older daughter has been Ana to dairy, dairy proteins and egg since she was 9 months old. So, I've been very passionate about child food allergies for a few years now. This is just a very different situation that what I am accustomed to.