Tuesday, February 12, 2008
Video of F.P.I.E.S.
Here is J's reaction to soy. The video was taken in September 2007. Our pediatrician wanted to see a reaction first hand, Big-D and I struggled with the idea, so I decided to bring my video camera. I am very glad that we decided to go ahead with the challenge, the video has been very helpful in explaining J's reaction.
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16 comments:
wow.
totally brings back memories of the night i had him. poor little guy. it is so great to see how far you guys have come. way to go on not giving up. i know it was hard. you are a rockstar.
mandy that is the saddest thing i have ever seen! At least now you know whats wrong and poor Jack doesnt have to go through that ever again.
Hello,
My son, Brennan also has FPIES. He had a reaction last night. Not to a challenge, but to hidden rice flour coating a BK french fry.
My heart breaks. Thank you for sharing and trying to make people understand what FPIES is.
Sharon in Los Angeles
my son has FPIES too. Have you viewed www.kidswithfoodallergies.com
it's very helpful and has a whole forum for parents with FPIES kids. makes you not feel so alone with the whole issue!
My son Bronsen has FPIES. I just cried watching your video. At 10 weeks after 3oz of formula supplementation we almost lost him. I would like to contact you and offer my email address to anyone who has a child with FPIES. I am considering writing a book. I am a new mom and need support! Bronsen is now almost 6 months old! jenlisabuck@yahoo.com. Hope to hear from someone soon!
My 9 month old son has FPIES. He cant have any dairy, grains, or soy. I am so thankful for your recipes. I cry every time I look around your blog because it is so similar to my son. Thank you. Summerjorgenson@hotmail.com
kidswithfoodallergies.org has a great support group for parents managing FPIES.
I also wanted to say thank you so much for your website. We discovered it about 6 months ago during another one of our son's horrible FPIES episodes. Your video was terrible yet exactly what was happening to our son, EXACTLY. Since we found it, we have managed to avoid any episodes now for six months. We had a feeling it was the poultry and fish he had been eating, although he was technically not allergic to either, and your website validated our suspicions and led us to the answers we needed. Thank you again!
Thank you doesn't seem to cover it! My son is 11 months old. I feel like he has been throwing up since birth. Our allergist finally begain discussing FPIES wiht us. I have been upset, confused, angry, etc. Watching the video of Jack was like watching one of John's episodes...very sad and scary. I found your website and suddenly do not feel so alone. Jack is such a beautiful boy. I now feel like John will be ok too. Thank you again!
National Jewish in Denver, CO is truly amazing. They provided answers for us that we had been looking for for months. I feel very lucky to be so close the the nation's BEST facility for allergies, and other immuno-deficiency illnesses. Thank GOD!
Brenda T Leffler
Our daughter Darby was diagnosed at 8 months with FPIES after 2 ER episodes, one of those including a Terra2 ambulance ride to the PICU down in Denver. We were scared to death. After numerous tests, and one visit to Jewish National, we were given the diagnosis of FPIES. After watching your video of Jack, it's totally how oru daughter looked during her episodes. Crazy, but good to see that others out there are getting answers too. THANKS!
My son was just diagnosed this past Saturday with F-PIES. I just viewed your video and I am greatful that you have put it out there for people to see. I felt as if I was watching my own son and that I am not crazy that something was wrong. We have just began this journey but it is nice to know that there are people out there to contact with questions and support.
Hi
My son is 4 and is a very rare case of fpies. Its long term, has caused other complications that has led us to have 5 specialists. Our lives our medications, doctors appointments and waiting for that next attack. I am desperate to meet another mom out there that has an older child with this long term disease. Is there anyone out there like us, if son please email me on jeremyandholly@aol.com.
thanks
Holly x
There are many children and adults with food allergies I see them every day at the job that I do. My suggestions would be to go to see a Natural Pathic Doctor and have them do blood work to find out what your child is reacting to. Keep in mind there is always something that you can replace for that food that they can't have. The more antibiotics your child is on the worse their digestive system will get. You need to replace the good bacteria that all theses antibiotics kill. Mega doeses of probiotics will make a huge difference in their digestive systems. Natural is the way to go. Most of the food we eat is full of toxins and chemicals and our bodies cannot assimulate them and they will wreak havic on our bodies. We need to get back to the basics veggies, veggies and more veggies and some fruit and do not forget the good fats our bodies need like flax oil, fish oil, coconut oil, advocatos and nuts and seeds. These are the foods that God and nature entended us to eat.
I have a daughter with FPIES, and as others have said, watching your video was like watching one of my daughter's episodes.
I'm afraid I'm posting here to take to task the above poster.
'Natural' is meaningless. Nicotine, arsenic, cyanide, morphine, asbestos, ricin, influenza, intestinal parasites, cancer, HIV and countless other nasty things are 'natural'.
I'd hate to think someone endangered their child's life by listening to such nonsense.
There is no such thing as a 'natural pathic doctor', and the thought of such a charlatan performing blood work on a child terrifies me.
Please everyone, don't listen to this quackery.
If your child has FPIES, it is a known medical condition which can be kept under control.
Once FPIES is diagnosed, it is a simple matter of reading food labels and eliminating the trigger foods from the diet.
Please don't buy into all the snake oil crap, remember that rice, wheat, eggs, and all of the other trigger foods that cause these reactions are 'natural' foods.
FPIES has nothing to do with fish oil or god, it's just a medical condition that, thankfully, is easy to control once diagnosed.
Sorry, forgot to add that there is currently NO blood test for FPIES.
As far as I'm concerned, a 'natural pathic doctor' doing a blood test for FPIES and giving advice to parents based upon such a blood test is nothing short of attempted murder.
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