Kyla’s Journey with Eosinophilic Esophagitis (EoE): From Diagnosis to Dietary Therapy and Beyond
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- เผยแพร่เมื่อ 12 พ.ค. 2020
- Living with a rare condition like eosinophilic esophagitis, or EoE, isn’t easy - especially for kids. When Kyla didn’t enjoy eating, had trouble sleeping and wasn’t growing, her mom, Amanda, knew something wasn’t right.
Even after they received an EoE diagnosis, Kyla’s parents were often frustrated by lack of answers from various pediatricians, gastroenterologists and allergists. But EoE and other eosinophilic gastrointestinal diseases (EGIDs) are so uncommon that not every team is equipped to treat them, particularly in growing children. Ultimately, the family sought an opinion from the experts at Children’s Hospital Colorado’s Digestive Health Institute. Soon, with help from a multidisciplinary team of pediatric gastroenterologists, allergists, registered dietitians, feeding specialists, psychologists and child life specialists, Kyla found the care she needed. Today, with her entire medical team collaborating on a individualized plan for EoE treatment, an EoE diet and more, Kyla is thriving.
Watch Kyla and her family as they share how they found hope and resources for living with EoE. Then, learn more about our highly specialized pediatric Gastrointestinal Eosinophilic Diseases Program: www.childrenscolorado.org/doc...
The worst part about Eoe is that There are a million things u can possibly be allergic to
My son, age 16, was diagnosed with EOE at age 12. Children’s Hospital of Colorado missed it when we had him there at age 3 for a work up by their immunology clinic. He had all of the classic symptoms (consistently enlarged tonsils, high levels of normal flora in his throat, frequent vomiting, low weight, borderline failure to thrive), but unfortunately we, as parents, had never heard of it. They weren’t the only ones to miss it. 2 pediatricians, 3 ENTs (one from Children’s), and 2 allergists missed it. More education needs to be done, even at Children’s. We held out a lot of hope in getting answers there. The lack of them caused 10 more years of untreated EOE for my son.
Did your son get his tonsils/adenoids removed? Just curious. My son is 2 years old with severe EOE and I am going to an ENT to look at it.
Oh MY GOODNESS!! Standing in the grocery store aisle. Been there. My son was diagnosed when this diagnosis was not recognized by insurance companies. I remember the pharmacist who didn't believe the how the prescription was written because EoE was so new. My son started showing signs at 3 months old. He's now 15 and this mother is spot on when she said that it's a family diagnosis.
Such a beautiful family, with such a beautiful story! It's so easy to beat ourselves up about what we've done or haven't done. We know this all too well, having a daughter with epilepsy. But we're so grateful for our children's hospital, where her doctors work together with us to give her the best possible care that we can give her. Thank you for sharing this story!
I have EOE too, it is hard. I had the exact same experience with doctors and was very frustrating but I got through it but still live with it. I hope you get through this
My friend has it
me too its sucks because i dont know anyone else with it
Hi #EoEpals i feel like my esophagus is closing right this moment 😢😢
have you been offered steroid treatment for your eoe. I started mine about a month ago, it is really noticeably starting to help already.
I am struggling so bad. I am 24 and go to sleep nightly with the array of odd reaction feeling in my esophagus and stomach. Can someone please point me in the right direction? I’ve been to allergist but do not want medication. Please
I have EoE too and seeing someone who relates to me so closely makes me feel at comfort. My friends dont understand and its to hard to explain so when i see someone explain it so well it makes me so happy.
I have EoE as well, I know your pain. My EoE caused acid to burn my esophagus to the size of a pencil and sometimes it feels like I'm choking. So far I'm on extremely strong anti acids but nothing seems to work for my esophagus yet. I'm at the point where it's causing tremendous anxiety and depression/fear. I'm not suicidal but I'm at the point where I kinda want to die just for the physical relief. Haven't tried dupixent yet but I'm hopeful.
Do you know what you are allergic to?
I didn’t get diagnosed with it till last year I am currently 15 at the moment and it’s very tough, when I took an allergy test I wasn’t allergic to anything
My 4yo has this. This video was so helpful
My son was just diagnosed with EOE this week. He has never eaten a full meal, and he always had trouble trying to swallow food. We had swallow studies, but nothing came up on the X-ray. Then we found out about EOE from our group of autism moms in AIM. My son also has autism, so feeding is very difficult. We finally feel like we are on the right path to getting help. Thank you for your story.
This is our situation also. Just diagnosed 1 week ago. He literally only eats gluten and potatoes.
I've got this as well
Just had one of my worst episodes. Couldn’t even swallow water. Lasted 2 days.
I have EoE. I am allergic to milk,wheat, eggs, nuts, and peanuts. It’s hard living with EoE, but overtime I have found plant based foods that is EoE safe. Me and my family has found food allergy friendly overtime that tastes just like the food I am allergic to. I have been struggling with this condition for 6 years now. I love seeing that I am not the only one with EoE.
Eyyo I got the same allergies as you and EoE too
I just been diagnosed with EoE in my adult hood. I did allergy testing and everything came up up negative. Allergist assumed that it was acidic related instead of allergy but when I cut out acidic foods I was still having flares up. Even my gastroenterologist think that it’s the spring season that’s flaring me up. Bendryl is the only thing that stops my flare ups. Anti acids and Flovent does not help me. I am still on the road to discover why I am having flare ups.
Can you tell me what you experience when you get a flare up?
@@jtperceptions I have chest pain and tightness like I can’t breathe the pain radiates to my shoulders and my feels tight like closing if I eat during that time my food gets stuck.
I have a similar story, diagnosed with it at 19. Started really noticing issues around 17. The only thing that has helped me is a clean ketogenic diet or a “carnivore” diet. These are anti inflammatory diets in nature, and it’s the only thing that has helped me.
Also diagnosed as an adult, did allergy tests that came back negative and was told it’s most likely all due to acid reflux. Literally no idea what to do.
@@dylanasher7325| Are you managing your EOE thru medication? I also was diagnosed, but in my late 50’s during Covid?
I have this also. Kinda struggling. I have a procedure in a couple days to look at more options
That story made me cry ,
I see this kind of story in my work all the time and it chokes me .
People need to tell their stories for doctors to understand the impact it has on families .
I’m so glad the answers were found .
Hope is everything and knowledge. ❤
I was just diagnosed with EoE. It’s a horrible disease! There needs to be more research on this.
I was just diagnosed as well and I agree. There needs to be more research. I wish there was a team really championing this for us. This disease is horrible!
I have EOE too and I have gone through over 6 endoscopies and food diets
just got diagnosed with eoe at 14 about 2 months ago and I was completely normal up until year 8 and I have been suffering with eoe unknowingly for about 3 years
I have eosinphilic esophagitis too but also the reason why most allergenics don't usually know the unknown factures about eosinophilic esophagitis is because people are still studying it it isn't life threatening but it could go out of control and cause severe or critical damage to the esophagus i am not a adult but i certainly do know the results of my experience in eosinophilic esophagitis but what am I saying is that only some doctors are studying more and more are because it's such a rare disease
I have it too it’s hard it causes viruses to be way worse than it’s supposed to and not being able to live the life u want and the foods u want to eat and waking up and being lucky that u didn’t get acid reflux i still can’t find the trigger and i got diagnosed when i was 9 and im 11 i just hope no one has to feel this pain and feeding tube and going to the doctor alot and not being able to run and have because ur throat just kills so much which is hard for me because i love Basketball and football so much but at least this second im a little ok
wishing you the best! just found out that I have eoe and I'm 22, it sucks and it is hard to deal with but we will all get through it!
This broke my heart I hope you're doing better two years later.. I'm 21 and I got diagnosed when I was 8. I've also been going to the doctors each year but the lifestyle really does get better as you learn how to navigate life with EOE. I was miserable when I was younger and the acid reflux made me sound like a smoker and gave me heartburn. My doctors (the ones in this video) prescribed me omeprazole which took my acid reflux away and I'm still on it! It is seriously a miracle and I feel no different from other people. Maybe ask your doctor about omeprazole. Whenever I miss a medication for more than a couple days my acid reflux returns and after I start taking it again it goes away. It is a blessing and hope you're doing better!
Currently 9 weeks on dupixent and nothing has changed!
Got diagnosed with it a couple days ago, for me it became so bad I puked blood after swallowing a french fry. I've begun eating acid-reducing pills which seems to help a lot. I'm over 23 but has had symptoms since I was 8. Good for her to be diagnosed early.
Same for me, I'm 22 and was diagnosed a couple months ago. choked on an ibuprofen and threw it up one time. I'm also on the acid reducing pills, have you found any foods that flares yours up? Its hard to know where to start. Wishing you the best and healing!
Same ive been choking since 7 years of age and i just got diagnosed at 31
I just got diagnosed with this in my 30's and it sucks stink wrinkles. Literally feels like I am having a heart attack sometimes... Being a kid having this must be fucked...
Noticed that my son regressed to full liquid diet at 6 months of age, he's now almost 13 and we finally have a diagnosis.
Seeing a allergist soon and hopefully we can get him on something he can eat.
I'm so confused about how and what to feed him.
fantastic organization and family !
my twins are 21 and have had 11 endoscopies at pch, but their team was no comparison to this--
our twins were seen by an allergist outside of pch, and the nutritionist advised that we "let them eat lots of ice cream and drink boost nutritional drinks--pathetic.
in addition, this is the first "time i've heard of transnasal endoscopies. putting our kids through continuous anesthesia was, and still is traumatizing.
if anyone is aware of a similar facility near arizona for treating adults, please share and THANK YOU
My 15 yr old just got diagnosed at PCH. Dr. Silber gave us the option of TNE.
My daughter has EOE and she is in the hospital all the time 5 days at a time usually and can’t keep most of her food down.
The doctor I go to is known to be one of the best in his field. Go to Rady children’s hospital in San Diego and ask for doctor Dohill. I might have spelt his name wrong
What was her blood eosinophil level that time ? Please reply asap.
4:17 i was the second person to try this and it hurt so badly they said they improved and it no longer hurts it scarred me to the point where i refuse to do it.
When I had mine done I was knocked out
I have eoe, before I started taking meds for it I would throw up a few times a week
I do understand you, your pain. My son 13, his symptoms started 5 years ago, feeling a lump in his throat. Lately started choking while eating. I am just sad, we have appointment again with GI, any kind of opinion is appreciated.
I am grown but I am going through the same thing .. it’s a terrible feeling
Hey Nurse Faye Eren i have eoe and gerd. No one will allergy test me for the same run around they said in video i have what feels like choking episodes when eating breads french fries root beer and soy items. Also get nausea with eggs and mushrooms...
I found that people who have eoe can also have acid reflux with it. One thing I found helpful was to always drink chamomile tea before I ate anything and to always have warm water at the table. Chamomile tea I find soothes the esophagus so it doesn't inflame as much. I also found that eating soups was really helpful in controlling my symptoms.
Also avoid red meat, legumes, grains (although highly processed wheat seemed to work for me idk... I avoided most breads anyway and only had pasta), and DAIRY (number one culprit for eoe for a lot of people).
There is a specific exclusion diet to find out if and what foods trigger EoE. My husband was diagnosed a few months ago after 20 years of problems.
He was told to cut out wheat and gluten (and any grains potentially contaminated with wheat), dairy, eggs, nuts, soy, fish and seafood to find out if his EoE was triggered by food (not always the case).
His symptoms completely cleared within two weeks. After 6 weeks, he had another endoscopy which showed massive improvement.
Not all plain sailing, though. After reintroduction of wheat and dairy, his symptoms came back. We still have a long road ahead to find out exactly which foods he can and cannot eat, but we will get there.
Cutting out the above foods and reintroducing them one by one with 6 weeks intervals seems a good way to figure it out. In my husband's case, his symptoms reappeared strongly enough not to need an endoscopy to know that wheat and/or dairy are a problem, but if symptoms are less obvious, this can only be done under doctor's guidance, with multiple endoscopies.
Buying processed foods is a pain with so many restrictions, but with half-way decent home cooking, meals can still be very nice. It takes effort and discipline, but is absolutely doable.
Good luck to anyone with EoE. I hope this helps a little.
EoE might be my problem too... maybe for decades.
BTW You can tell she's a little brainiac. She will likely have her own clinic in a few years!
Do most people with Eoe get better because I have it and I’m 18 and I’m scared about it because i was suffering all summer long and I was diagnosed in September after endoscopy. I had a day today after eating dried pork and it slowly went down my throat and I felt burning and some of it rose back up and now im afraid to eat because for hours it felt like food was sticking on my esophagus but how would I know if it is or not?
Try getting a bottle of digestive enzyme capsules and hopefully it will help your pain very quickly like it helped me. I felt better within half an hour. I felt like I had steak stuck in my chest for 2 days. My chiropractor suggested I try the caps she sold there. She said sometimes your pyloric valve gets stuck. I used all those up and bought a different brand from my independant pharmacy and it helps with medication induced pain too.
It's two years later so I hope things are better but I have EOE and was diagnosed over a decade ago. My acid reflux was so bad and lead to heartburn. My doctors (ones in the video) prescribed me omeprazole and my reflux stopped and I actually had no eosinophils and could eat foods. Couple months ago even with the medication I had an EOE flare up so like they say, they're not sure what causes EOE to be active or not.. but my acid reflux has never returned while taking omeprazole so maybe ask your doctors about it?
My husband has this but it causes him to choke. His throat immediately closes if he has a reaction. He had to dramatically change his diet. Has anyone else experienced that?
Don't let him eat anymore food go to a allergenis and ask them about his experience in eoe or jusr search the causes of eoe in Google lol 😆 but this is very serious the reason why i know this is because i have eosinphilic esophagitis too
I am not a adult tho but the best thing is speak to a allergenis try to tell them how can he get help but there is a hospital in Boston that hospital for that i go to when I have trouble eoe
Ask for a endoscopy
I'm 18 and when I had it a few months ago, I couldn't drink or eat for over 14 hours untill they got the food out of my throat at the hospital
My 19 yr old son has the same thing happen with his triggers and EOE. It's awful being a mom and not being able to do anything to help him. He suffers every day too! I know when I cook his meals he does better but we don't do it for every meal and he suffers and pays for it Always 😪
I have eoe my lord i hate it
And I hate the scopes
My 2 year old daughter was diagnosed with EOE today .
My daughter is four yrs old and it’s hard .
@@trisesanders6150 :(
did they mentioned if this is something hereditary?
What was her eosinophil level in blood ? Please reply urgently. I am worried about my son as well.
@@trisesanders6150 if you get it sorted early that's good though, I'm 16 and have had it my whole life and I've only gotten a diagnosis recently
I have this it sucks
EOE is related to parasites - my problem is i can only eat 5 foods and am malnourished as a result so must figure out a way to correct this.
Hi Kelly, i haven’t heard EOE is related to parasites? My daughter is 2 yo and has it. Wondering if you could share or send info on link to parasites, I’m desperate to get hers under control? I haven’t gone down the parasite route yet….
Is it just me I have eoe and my throat hurts all the time comment if you have eoe And do you have a steam pain
I have this, I have chest pressure that feels like an anaconda, and it fucking sucks. Legit so much pain all day
Idk if this helps anyone, but for me, it helps the pain and to get the stuck feeling of food in the esophagus when I take digestive enzymes. A chiropractor suggested it for me and it felt like the steak that felt stuck for 2 days finally became unstuck within half an hour of taking a digestive enzyme that I bought from them. I went on to buy more of a different brand from my pharmacy and they always seem to help whenever I have that pain in my esophagus.
My 19 yr old son has the same thing and it is aweful seeing him 6"3 230 lb having to lay flat on the floor to just get a little relief to breathe. He says the same thing with the pressure. Do you take any meds? I will pray for you.
I have over 20 allergies
i have eoe and it is just bad, im 80% off my age weight and meds arent helping so it really is sufferable
Was your kid being picky eater before she was diagnosed with eoe?
Sorry i want answer that sorry I think you got notifications of my question in place reply it
did she healed?
There is no cure to it some have it so sever (like I) that you will end up on a feeding tube by the end of your life, because our throats will close all the way up over time
Only way she could be healed is cutting out whatever food is causing the issues. For me it’s gluten. If I don’t eat gluten, I don’t have symptoms.
@@xptysz9131 I am sorry to hear that. My daughter has eoe too. When were you diagnosed and when you started the feeding tube?
@@qtrangvu 8:36
i have this lol
I have eoe And I’m only eight
EoE the anime
ettack of eren hahahax
I see her in my school xd