A Boy Allergic to Food
Joshua, a 9-year-old who lives with a disease called eosinophilic esophagitis, is allergic to nearly all foods. Pizza, hot dogs, you name it, and Joshua likely cannot eat it, or even be allowed to taste it or smell it.
Joshua gets most of his nutrients through a formula prescribed by his doctor, and through a feeding tube in his stomach. Because of his disease, Joshua is homeschooled by his mother, and needs to live his life with extra caution.
Cara and Brant, Joshua's parents, show what a day is like in the life of a boy who cannot eat.
What would happen if Joshua did eat one of the many foods to which he's allergic? He could suffer severe pain, but there is also the possibility that he could die.
"There's not a minute that goes by that I'm not afraid," Cara says.
Take a look:
Comments
There are many others suffering from this or other deseases and CANNOT have food. Now the only medical formula they can have is causing reactions and these chidlren are ending up in the ER. Please do another show focussing on this horrendous problem. See this link for more information. I beg you for these little angels to survive. http://savelittlemichael.wordpress.com
A lady in the billing department of the hospital were my son was seen. I told her the issues we've been having with our little guy & she told me to look up this show. Yes, I do believe this is it, how did they get a diagnosis? We are being sent to Vanderbilt iNashville now. My child can eat some foods but also has a special formula he drinks, ElecareJr. So much Thanks to the family for speaking out & Thank You for doing the show
There is hope and it might come as these children go thru puberty. Our daughter as allergic to almost all foods an natural things she to was on neocate but eventually was able to add chickenan a few things to her diet when she hit puberty it was like a miricle and she is able to eat alot more things she still has allergies severe ashma and ezamtha but she is whole differant child and we hope for her future to be a good on so keep the faith and look for signs during puberty when the hormones start to change. I hope you have the same good fortune we did I have a six yr old that has it to but not as severe and we are waiting to see if this works for her to
Hi,Several months back on your show you had a Joshua with and eating disorder that only at thru a feeding tube and it caught my attention because my now 16month old was using a feeding tube for and eating disorder she was misdiagnosed with... Well I am happy to say about a month ago the Doctors took the feeding tube out... Best blessing ever!!! I have several months of feeding tubes and bags left over that my insurance paid for and is in the original packaging that We would LOVE TO ANONYMOUSLY DONATE TO THE FAMILY... I do not want them to go into the trash... If someone from your show could inbox me to make arrangements to get these items to them I would appreciate it!!!! Thanks!!!!
i kind of understand what those parents are going through, my son has eoe, he was diagnosed when he was 1 and now he's 4. he is allergic to pork, beef, corn, dairy, soy, he was allergic to oats and wheat but thank god he grew out of it.
i now how hard it it to raise a child with eoe, it's scary
Maybe his mother should grow her own fruits and Veg which is more healthy anyway. We get things that are not good for us and we eat to much. So I have 76 Allerigic . I have allergic to nature and some food. I can't eat just anyway. that for sure.
watch the show...it saved my life ! I've been sick for over 2 years with 5 esaophagus dilations and no diagnosis...after watching your show, went to an allergist to be testes and find out had 2 severe food allergy that could kill me ! now I know so I avoid those food .... thanks !
Cara, even if Joshua has severe allergy let him be a boy and play and go to school...there are ways to monitor him so he will not eat anything and he still can have a normal life as a child....if you keep him from growing up and sheld him all the time , he will resent you later !
My family knows EXACTLY what you are going through. My son, Miles, has EE, HES, and Steven Johnson. He had been home since 3rd grade and things only got worse for him. This past year I have made it my mission to find out the answers for Miles. I insisted doctors give my son an auto-immune suppressant called, Cyclosporine. Things improved well enough that Miles is in school for the first time in 6 years. They will be taking him off to try Methatrexate. If you ever want to correspond please email me!
This message is directly directed to the parents of this kid. I know that in search for cure you will give it a try to many things and i hope you listen to my message. Please watch the documentary
"The living Matrix" Here is the link to a preview
http://www.youtube.com/watch?v=AuLeFsDGSbA&feature=related.
I wish you the best in your way to finding a cure.
I have a son diagnosed with EE and his doctor just put him on the neocate jr elemental diet as our last hope. The most frustrating thing about this is that it is an absolute medical neccessity so his esophagus does not swell shut, yet the formula is not covered by insurance. Each can is $50 and he is supposed to drink a can a day; Do the math, that is $1500 a month! I am a single mom and my total income for a month is less than $1500. I was just wondering how other families afford this? My son can't afford to not have it but monetarily we can't afford it. Please let me know of any resources for us in the state of Oklahoma.
Thank you,
Ashley
This is the very first time I actually looked into the show and thank you. I am a therapist and I do a treatment that is called body chemistry which removes/alleviate many allergic/sentisitivity reactions on about anything that exist. No one has to live life this uncomfortably! I am more than happy to answer questions that you may have when you email me. Opportunity comes knocking on the door and we must take it! Speedy healing to you Joshua
Anderson,
I can't thank you enough for sharing Joshua's story. I started working with Joshua when he was 2. I spent every day in the Koscinski's home, working with the family and helping Joshua. You have no idea of what Joshua went through and how far he has come. There are a number of experiences that a child and family should not have to go through. One of the hardest for me was watching Joshua, at the age of 2, getting tested for allegries. They put over 20 shots into his back. And we had to sit there and wait while Joshua screamed. I am a teacher and most children learn letters, numbers, colors, etc. at that age, but I was teaching Joshua how to go to the doctors without getting upset. We spent over a year practicing...starting from just letting the doctor get close to him ...to touching him... to getting shots and tubes put in. It seems that a member of the Koscinski family (including Cara) is always in the hospital, usually it happens near a holiday or one of their birthdays. Thank you! I fell in love with Joshua and his family 7 years ago and now so has the world. I pray for my BBF (that's what we call each other) everyday and now you gave the Koscinski's the love, hope, and rescources that they need. They truly are the best family. Thank you from the bottom of my heart.
Love,
Lynn Murray
Please look into acupuncture for Joshua. Trust me when I tell you that it can do NO harm! People respond so well to it. Acupuncture will actually reverse this allergy. The body has it own way of healing itself. If this is something that you have not looked into, please do so. it is totally safe for his age too. Don't be discouraged by the needles, as he won't even feel them. He will even feel relaxed and comfortable. You have absolutely nothing to lose at this point when it comes to finding a solution to help your Joshua! My prayers go to your family!!!!
I have a niece with EoE. She is also on a feeding tube, with all food eliminated right now. I know she's in good hands with her team of specialists - and her parents do an amazing job in tending to her care and providing her with as much "normal" as possible. We share hope for a cure!
These EoE kids overcome so much. Food seems to be part of everything - it's hard enough for kids with food allergies, but certainly even more challenging to have nearly all foods cut out due to eosinophilic disorders (in addition to have the potential for an anaphylactic allergic reaction to certain foods). Many people will never have a clue all that these EoE parents are dealing with....their own emotions, their childs emotions, handling their child's pain, answering their child's questions, routine scopes and appointments, medications, expensive formula, dietary changes for the whole family, vacations and eating out require more planning and packing, insurance claims, developing a 504 plan, meeting with teachers & administrators to just explain what's going on and share ideas to keep the classroom safe, trying to educate others, being forced to defend themselves or feeling attacked, many sleepless nights (with regular tummy aches, breathing treatments, changing out the feeding tube bags, or doing laundry when the bag leaks out everywhere)...the list could go on and on. Top it off, they try to smile and pretend this is normal - they protect their child, give them love and make them feel normal. Shouldn't every child feel loved, safe and included...to feel normal?!
I want to thank Joshua's family for putting his story out there. There is so much that goes on that can't be captured in a short segment. Just know that you are making all the right decisions for him - you've done research, are working with trusted professionals and specialists, and love him like no one else does. It is sad to see the approach some people take. Bottom line is, every child is different - every story is different. No one else is in your shoes, so who are they to judge?! I'm keeping your sweet son and family in my prayers, always with hope!!