Living With Eosinophilic Esophagitis
Our 3 year old son has a rare non-curable food allergy disorder called Eosinophilic Esophagitis in which his immune system attacks the food he eats thereby attacking his body internally. I've wrote about his disorder very briefly before. However, I've never went into full details about how his disorder affects him and our daily lives mainly because I don't want it to seem a bigger issue than it is.
But today, unlike most days, I feel the need to spill my guts.
It breaks my heart daily to see my son go through this but he is a tough little guy. Yes, I'm aware that things could be worse but knowing that doesn't make it any easier. Having a child with EE is not easy. He does not have a normal life. Among other things, he can't eat at most restaurants, he will never have a school cafeteria lunch, and he can't indulge in most birthday party cakes & goodies for fear of getting sick. Our son knows there are many many foods he can't eat and that food list will possibly grow as he gets older.
Most of your kids will probably ask, "What's for dinner?" while our 3 year old son will say, "Will I puke it?".
He is so accustomed to throwing up (he did it several times per day for over a year before his complete diagnosis) that most of the time, unless it comes on suddenly, he will go to the bathroom-puke, flush, repeat, puke flush, repeat. It is again heartbreaking to say the least. Now with the help of a restricted diet and steroids this only happens once or twice a week. Sometimes we will get lucky and he will go for 3 weeks straight without any gastrointestinal sickness.
When trick or treat comes along he won't be eating much candy like most of the kids. I will go through his bag just giving him a few things to sample while his 6 year old brother devours more than his fair share.
Our biggest challenge right now is food restrictions and modifications. I want to change the way our entire family eats just for him. It is something that will take some time. However, I know total restrictions are impossible. For instance, our 3 year old is severely allergic to our 6 year old's favorite foods.
We are very thankful for our son and his health. But today I want people to be made aware of this disease and it's effect on families. Click here to view a video to help you understand more about these disorders. In the near future I'm hoping to organize a fundraiser on this site to support EE and APFED.
If you have a child with a life altering disorder, any of the EE disorders, or food allergies I'd like to hear from you.Labels: Eosinophilic Esophagitis
Our 3 year old son has a rare non-curable food allergy disorder called Eosinophilic Esophagitis in which his immune system attacks the food he eats thereby attacking his body internally. I've wrote about his disorder very briefly before. However, I've never went into full details about how his disorder affects him and our daily lives mainly because I don't want it to seem a bigger issue than it is.
But today, unlike most days, I feel the need to spill my guts.
It breaks my heart daily to see my son go through this but he is a tough little guy. Yes, I'm aware that things could be worse but knowing that doesn't make it any easier. Having a child with EE is not easy. He does not have a normal life. Among other things, he can't eat at most restaurants, he will never have a school cafeteria lunch, and he can't indulge in most birthday party cakes & goodies for fear of getting sick. Our son knows there are many many foods he can't eat and that food list will possibly grow as he gets older.
Most of your kids will probably ask, "What's for dinner?" while our 3 year old son will say, "Will I puke it?".
He is so accustomed to throwing up (he did it several times per day for over a year before his complete diagnosis) that most of the time, unless it comes on suddenly, he will go to the bathroom-puke, flush, repeat, puke flush, repeat. It is again heartbreaking to say the least. Now with the help of a restricted diet and steroids this only happens once or twice a week. Sometimes we will get lucky and he will go for 3 weeks straight without any gastrointestinal sickness.
When trick or treat comes along he won't be eating much candy like most of the kids. I will go through his bag just giving him a few things to sample while his 6 year old brother devours more than his fair share.
Our biggest challenge right now is food restrictions and modifications. I want to change the way our entire family eats just for him. It is something that will take some time. However, I know total restrictions are impossible. For instance, our 3 year old is severely allergic to our 6 year old's favorite foods.
We are very thankful for our son and his health. But today I want people to be made aware of this disease and it's effect on families. Click here to view a video to help you understand more about these disorders. In the near future I'm hoping to organize a fundraiser on this site to support EE and APFED.
If you have a child with a life altering disorder, any of the EE disorders, or food allergies I'd like to hear from you.
Labels: Eosinophilic Esophagitis
Permalink posted by PetiteMommy at 9:49 AM
35 Comments:
What a challenge for you and your family! It must be so hard to be restricted like that. I think it is a good idea to modify your family's eating to closer match the youngest within limits so the 6 year old does not resent the fact. Tough balance.
What foods is he allergic to? I can't imagine how hard it must be to watch him be sick, and worry that each new food might hurt him. I considered trying a special diet for Cordy's autism, but it was too restrictive to incorporate into our lives. It must be so hard to watch every little thing he eats.
Thanks for telling us more about his condition. Since I'm in nursing school, it's valuable to learn about things like this.
Chelle, Yes, we are trying to do that. But I can't take away basically the only foods our 6 yr. old will eat since he is a picky eater.
Christina,
He is severely allergic to milk, cheese, soy, corn, chicken, lamb, peas, cabbage, coconut, barley.
Corn is the hardest one since it really is in almost everything and there are like 100 different names for corn in products that are pre-made/processed.
He also tested positive for eggs, fish, wheat but he can tolerate those so our Ped GI & Allergist said that with his condition if he can eat the food and not have a reaction while taking steroids that he could have those foods.
He also has seasonal allergies to grass, dust, pollen,etc.
There will come a time when we have to take him off steroids and I don't know what we will do then.
I totally get what your going through with trying to do a restricted diet. Thanks for commenting.:)
I'm so glad you shared this Amanda. You know where I am if you need to vent. :( I'm so sorry! I can't imagine watching my baby go through that for years. It was hard enough with reflux but that went away AND was helped by meds.
That sweet boy. I was teary reading this, no person should live this way. I really hope one day something will help him.
Wow, Amanda. What a challenge for your family.
One of Julia's playgroup friends is allergic to peanuts - just peanuts - and I know how careful her mother has to be about what she eats. I can't imagine having so many things to watch out for.
I really don't have any experience with something like this, but Rockstar Mommy recently posted about her son and his food allergies. He has a lot, too. She's adjusted her diet to match her son's. That has to be difficult.
I'm glad your three-year old has improved with the diet restrictions and steriods. He must be one heck of a kid!
Hi,
I have a son with EE who is going to be 2 next month.
He's on Elecare and stage 2 baby food only. He goes to feeding therapy once a week but it doesn't seem to be helping yet.
He is the most fun little boy. He's crazy and we wouldn't change a thing except EE!! haha
Thanks for sharing. Is there a support group in your area?
Love,
Katie
My son has EE. He's two now, diagnosed at 8 months old, allergic to all but 10 foods. So I hear you! And Halloween does present additional challenges. Thankfully my guy is still pretty clueless that he's different and probably won't notice that he doesn't get to eat the candy he collects (fingers crossed). Best wishes from one EE mom to another!!!
Hello PetiteMommy,
I know just how you feel, my son is 9 1/2yrs.old and he was born with EE. The Drs. use to say he was drinking his bottle to fast when he was young and then when he was getting older the Drs. said he was eating to fast, that was why he was choking. He had his first barium swallow when he was 4 months old. He had so many different tests done before he saw the GI Dr. It took the ambulance to come to my house because my son was choking before the Dr. got serious and sent him to UCLA. But before he got to that point he had to get his tonsils and adenoids removed, he had tubes put into his ears because of recurrent ear infections, then after years of sinus infections and choking we met his GI Dr. It took one more year after that before she did an endonoscopy and diagnosed my son with EE. Since then we have been in the emergency room 2 times and the Drs. there don't have a clue what EE is. They left my son with the food impacted both times for over 2 hours. The first time was in 2004, and this last time was 2 weeks ago. I would like to find out how I can make these Drs. pay attention to me and realize just how severe it is. I have a letter from my sons GI Dr. but that didn't seem to make a difference. They still left him their waiting for the food to pass. I know just how everyone that has EE feels when the food gets impacted, because I have EE myself, the difference is that the GI Dr. here can work on me and there is no Pediatric GI Dr. close by. The closes one for my son is 3 hours away. We came back 4 days ago from UCLA, my son had more test ran on him. We found out he is now allergic to beef, rice, peanut butter, and all sorts of trees, mold and dust mites. The Drs. told us that my son is in very bad shape at this time and if he gets food impacted again he might not be so lucky to pass it. I am just lost because I feel that the Drs. here in my home town don't understand the seriousness of this disease and they do what they want when we go to the hospital.
On the brighter side my son is a fighter and has so much faith that he reminds me to be thankful for all the little things in life that sometimes we tend to forget. He is filled with so much life, he tries to be understanding about his condition and even though it's him going through everything I find him telling me that everything is going to be OK.
Hello,
I know exactly what your going through. My son is 20months old and has EE. He can only eat 5 foods and is on elecare formula. I can tell you my son is not on steroids. Along with all the specialist we decided to go to a holistic nurse practioner who found systemic yeast which is associated with this disorder. After 5 days of the 60 day treatment on the antifungals he stopped vomiting. Its now been 3 months without vomiting. I know this might sound alternative but I am a RN and I can tell you there is something to it. If you are interested the names of the specific tests to check for the yeast let me know. Everyone whats to treat the symptoms of EE but not the problem. Yeast causes allergies and allergies cause the EE. Essentially if you take care of the yeast the allergies take care of the EE. I know how hard it is to watch your child vomit on a daily basis. I just cant except that giving steriods to my son which just puts a bandaide on the situation will help. I am not saying anything bad about your decision to do that I know what lengths a parent will go to help their child. You have a right to do what you think is right for your child. I'm just letting you know that there is things you can do besides steriods that can help b.c they have helped my son. Kera
My son was just diagnosed with EE I am just learning about it. He is 12 yrs old, very small and over the past couple months just quit eating. First saying it hurt and then he just could not swallow. We are just now starting to investigate, they have him on some medication for 4 weeks. They haven't really told me what to do in the mean time I don't know what to feed him. He has always been able to eat oatmeal now he is struggling with this. I would like to know anything that will help or direct us to further treatment. my email is angiejcopeland@gmail.com
My name is Kera and I previously wrote about my 20 month old some with EE.If anyone is interested in viewing my website its lifewithee.blogspot.com There is a lot of information about my son's treatment.
Angie, I would suggest an elimination diet and see what he can or cannot eat. You can also try an elemental formula. If he is not allergic to certain ingredients you may even try things like Carnation instant breakfast.
My son was on steroids for over a year and we currently have him off of steroids. He's doing better as long as we keep him on a restricted diet. You may wan to look at apfed.org
Hi my name is rachel and i have a 2 year old son with EE. His doctor put him on 2 drinks that he was allergic to. Now they say he should have been on Neocate since the begining. He won't drink neocate because it's so nasty that he will need a feeding tube. The only thing he can eat right now is chicken. If he eats foods that he is allergic to his face gets all red and he always has dots all over his arms. My son can't even get a food therapist because NY state says he is too smart so untill the EE slows his speech down he won't have someone helping him learn how to eat properly and chew right so he wont choke on everything. JJ is up all night because supposably now he is asthma. It's horrible that in the eyes of the state children with EE are not disabled or anything when their lives are turned upside down and they can't say or do anything about it. You can get back to me at anyone can if they know anything that I don't already know. RKamen@oponline.net
Rachel: the other thing i'd like to say is that kids with EE should be getting endoscopys every 2 months so everytime a new thing is introduced they wait 2 months then test them. If they are worse they stop the food and if they are fine they go on to something else... so talk to doctors make them listen I know how it is I took my son to the best hospital in NY and the doctor is a nut!!!!! If anything Philadelphia is doing great work i took JJ there last week.. good luck everyone and email me if you'd like
I agree... An endoscopy should be done frequently. Its a relatively safe procedure. Our son is getting ready to do his 2nd one in the next month or so.
Our GI specialist recently talked to us about their being better tasting elemental formulas if we had to go that route. For now we are not (as long as our son doesn't lose any more weight) but I think it is something you should look into.
We are also planning on putting our son back on an inhaled steroid after his next endoscopy.
We are getting lots of visitors to this post here on the mom blog. Would anyone be interested in a separate blog about EE? I'd be happy to start one for everyone to continue the discussion, includes news+ updates,etc.
I am concerned that my 9 month old baby boy may have EE. He was a 'failure to thrive' baby at 3 months and after a battery of tests, was diagnosed with a milk protein allergy. Allergy tests a month later showed no milk protein allergy. Jack was on Nutramigen for several months, but has now been cleared to take Soy formula. He is on 15 mg of Prevacid daily as Zantac seemed to have no effect. Other symptoms Jack has had include: severe abdominal pains, projectile vomiting, gas, diarrhea and now refusal of solid foods. I have been told Jack will be referred to a paediatric gastroenterologist, but it will be several more months before this happens. Everything seems to move so slowly-as a mother I want to help my child now. Any suggestions?
We've just found out that our 11 yr old son has EE. With hindsight being 20/20, I see he's always had it. We were treating it as food allergy. What happened now is that the vomiting was no longer 2x/mo, it had become after every meal. Dr's were still thinking food allergies. It got so bad this Jan. I had to pull him out of school and homeschool him. I'm relieved to have a diagnosis, but scared, also. I am feeling so lucky that all this is happening with the internet in existence. I know what a funk I'd be in if I wasn't able to find out all I've already learned from the internet. Most priceless of all is to see that I am not alone. And that families do survive this. What an awesome place for me to find. Good luck to all of us. And I need to refer to this website to keep my spirits up, since my son takes his cues from me. God bless all of us mothers out there.
I'd love it if you started a separate blog on EE. We were recently diagnosed, and when we were at the GI clinic, so many parents looked so sad and scared. I mentioned this website to them, and they seemed excited. I'm glad I found it. It is so important to share information on what has worked, non traditional methods, anything to save us from repeating steps, or not knowing of other steps. Doctors are only human, and they can't possibly know everything that is out there. The more minds involved, the better. My 3 boys also have had bouts with asthma, and food allergies, and chronic hives. 3 yrs ago, when my body couldn't handle one more trip to ER for any of them, I decided to see a stress therapist. It was one of the best things I ever have done for myself. She told me that one way of dealing away with fear is to find out everything you can on what is scaring you. I did that with the peanut allergy, and felt more confident. I am doing that now with the EE, and I feel better than I did just last week. So, after all this, I just want to say, YES, I'd love to see a site devoted to parents living life with EE. Because it isn't just about us, it's our child's life that need to be lived out yet, with a confident and positive parent.
How is your family doing in terms of managing the EE? We were diagnosed in the fall of 2006 after 2 years of unexplained vomitting and untreatable reflux that wasn't reflux. My son's health has gotten better but we still have a very restricted diet and take meds daily. I did start a blog of my own because of the lack of experience and information out there at the moment because this is still so new for so many people, including the professionals. Good luck to you!
Tracy
Hi! My 15 month old daughter has been recently diagnosed with EE and EC. She drinks Neocate Tropical, and has 5 "safe foods" she can eat. However, the more I research the more I fear her safe foods aren't so safe. Thanks for posting your story! I am currently trying to start a support group in AR so others like myself don't feel isolated and alone!
Hi everyone. My 7 year old son was recently diagnosed with EE, and I am still reeling--and trying to understand what we are really dealing with. I have lots of questions for you guys!
1. One of the entries says somthing about food becoming impacted. Is that part of EE? What are the symptoms, and what do you do for it?
2. Can speech and swallowing be affected in even older children, like my son?
3. I am very interested in the antifungal treatment--I really hate steroids. Can you give me more information on that?
4. Has any of you heard that EE could actually be a symptom of an auto immune condition, such as lupus?
5. Has any of you heard of Zolair (I may have the spelling wrong)--it is a monthly shot that "turns off" the allergic response, and is approved for children 12 years and older. My allergist suggested it, by my ped gi dr had no idea what it was. It sounds great--any one using it for food allergies?
6. When does this end, if ever? I was told my son would outgrow many of these food allergies in puberty--but they have been saying that since he was 2. What have you guys been told about that?
FOR ANYONE NEEDING A GASTRO DOCTOR AND CANT GET ONE RIGHT AWAY... Go to the emergency room im serious i've done this.. Tell them all the symptoms throwing up and so on... they HAVVVVVVEEE TO get u in to see a gastro. faster! I've done it, it worked. WHat these kids have they can't wait it's serious and as much as everyone says ooo they can't die from it yes they can.. the losing weight feeding them foods they are allergic to can be very bad... BE CAREFULL WITH PEPTAMEN JR. has anyone had problems with the babies teeth? My sons teeth or now so ad from vomiting and this drink he has to get 4 pulled and he is only 2 EMAIL ME Rkamen@optonlie.net
My daughter is getting the scope/biopsy procedure this Friday and I'm so scared for her. She's been suffering from severe reflux and food intolerances since she started eating solids. She is turning 1 this Thursday. Her daddy has an esaphagus condition that sounds like a mild case of EE. He has difficulty swallowing and food gets stuck in his esaphagus. Since the condition is hereditary I have this feeling that my daughter's biopsy will show up positive for EE. Thank you for sharing your experiences online. It can be very isolating when your child is not well. It often feels like no one understands and no one is going through anything similar. Thank you for sharing your experiences. It helps to know that I'm not alone.
I have a 3 year old son with EE. I can hear where you are coming from. He was diagnosed last october. He's been on flovent since and he still vomits every day. He doesn't like to eat very much, mostly just bread. I have him on a bunch of different types of vitamins and pedasure wishing the best for him. it makes me cry just having to watch my son go through this. He also has pica caused by his iron deficiency. for some reason his body doesn't store iron. so we are waiting to go to the childrens hosiptal to go get tests done. I have a question, my sons stomach doesn't empty properly and my pediatrician doesn't know if it is cause by ee. does your children with ee have this problem?
Hi Amie,
I'm not sure what you mean by your son's stomach doesn't empty properly. Anyway if you mean that when he vomits it seems like his food from 10 hours ago has never digested or that his stomach always looks bloated then I know what you mean.
I'd like for you to email me if you get the time. :)
Our son Constantine also has EE, he is 18 months old and we struggle everyday with this disease. We are trying very hard to help our baby and others like him. 2 minutes of your time will make a difference in our fight.
Each year American Express provides $2.5 Million Dollars to toward a certain cause. My husband made a proposal to them to fund research for Eosinophilic Esophagitis.
His project was approved and is 1 of just over 100 approved projects so far. The recepient of the money is determined by voting, so we need as many as possible votes to provide the much-needed money for research.
Please take a 2 minutes to nominate it at this link:
http://www.VoteForEE.com
Every family member with a valid email address can vote.
Here is a short 2-minute video on his disease:
http://www.youtube.com/watch?v=em4WFciW2Mc
PLEASE FORWARD THIS TO YOUR FRIENDS AND FAMILY!
Our son Constantine also has EE, he is 18 months old and we struggle everyday with this disease. We are trying very hard to help our baby and others like him. 2 minutes of your time will make a difference in our fight.
Each year American Express provides $2.5 Million Dollars to toward a certain cause. My husband made a proposal to them to fund research for Eosinophilic Esophagitis.
His project was approved and is 1 of just over 100 approved projects so far. The recepient of the money is determined by voting, so we need as many as possible votes to provide the much-needed money for research.
Please take a 2 minutes to nominate it at this link:
http://www.VoteForEE.com
Every family member with a valid email address can vote.
Here is a short 2-minute video on his disease:
http://www.youtube.com/watch?v=em4WFciW2Mc
PLEASE FORWARD THIS TO YOUR FRIENDS AND FAMILY!
I have a 3 year old recently diagnosed with EE. We eliminated the 8 common food allergies and recently had him rescoped. He still has severe EE. They want to start a steroid. I'm frustrated because I feel that is just covering up the problem. I want to know what is causing it. Does anyone know of other food allergies associated with EE.
Thank you my family no longer feels alone. we were lucky our now five year old got diagnosed at the age of 14 months when he failed to thrive and the doctors could not figure out why he would not eat or he would puke and stop breathing. A wonderful G.I. doctor in the feeding clinic at Tulane Hospital of New Orleans with the help of his primary doctor Dr. Terry L. Dise (love her) he went through so many test but Dr. Rosenburg the G.I. at Tulane had a research study on the disorder he was the youngest patient diagnoised at that time an was tubed on Pediatric EO28 which he now drinks just fine. He is strong now and on target. He is entering Kindergarden and people are so afraid and in turn pass judgement by saying all he does is drink that can't be good. We don't go out to eat anymore. It is hard but my baby is worth it. I remember at that time the internet had NO INFORMATION ABOUT EE. We got sheets on what he can't have 11pgs to say NOTHING but NO Whole Foods hadn't even heard of it to help. WE ALL HAVE TO STICK TOGETHER AND GET THE INFORMATION OUT THERE. I WOULD LIKE TO TAKE THIS TO THE F.D.A., U.S.D.A., CONGRESS, AND THE PRESIDENT. WE NEVER HEARD OF SO MANY FOOD DISORDERS BEFORE NOW AND FOR CHILDREN TO BE ALERGIC TO FOOD PERIOD IS HARD.... SOMETHING HAS TO CHANGE. THE FORMULA IS SO EXPENSIVE AND MEDICAID WON'T PAY FOR IT ANYMORE SINCE HE IS NOT ON THE TUBE. HE DRINKS THE FORMULA NOW... SOMETHING HAS TO GIVE IT IS HARD PLEASE EMAIL ME WITH IDEAS ETC SO AWARNESS CAN GROW. Tonya and Jack Proud parents. jtinvestments@hotmail.com or jackbenn23@hotmail.com
Hi! I have had E.E. for years and was finally diagnosed about 4 years ago. My son is being scoped in a few weeks.. which is basically just a formality because the Dr. says he is sure he has it... just has to get the biopsy results. I have just started the 6 food elimination diet. I wish there were something that made all of this easier for all of us. My e-mail is megandale@hotmail.com if you want to write.
Shalom,
Megan Shrewsbery
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My 2.5 year old has the misfortune of having been born extrememly premature, and inheriting EE from his Dad. He is recovering wonderfully from the circumstances of his birth, but EE is a terrible ongoing issue. I manage his diet by avoiding all the known and likely allergens.
I just wanted to share two things. First--There is hope! My husband (who has been choking on his food since he can remember) finally got a diagnosis via biopsy after learning of our son's EE. He did the 4 week steroid treatment, and eliminated the most likely "food culprits" from his diet. He has been in remission for over a year, and leads a totally normal life--just without dairy and nuts.
Secondly, Cincinnati Children's Hospital Medical Center is doing remarkable research and has a clinic devoted to Eosinophilic disorders. They are on the web, and have lots of information available and research publications. They are in the process of trialing a therapy that initially has been used on asthma patients, and is promising for EE as well. It involves blocking some of the overactive immune system cells--not steroids.
Prayers going out to all of the little ones suffering with this disease...
Hi Petite Mom! My daughter is in the process of being diagnosed with ee. We've just recently been through the colonoscopy and upper gi and that's where they saw all the eosinophill cells, in her esophagus. My question to you is, my little girl (who is 3 yrs. old by the way) does not throw up persay, but she spits up and then swallows it. That's why I never noticed it. Now that they have her on prevacid twice a day and have told me to be watching, I see it happening. We know she has an allergy to milk and eggs and are going to the allergist next week to have her fully tested, how do you come up with meals for your little boy? I'm so overwhelmed in trying to come up with three meals a day that do not consist of any milk or eggs. It's alot harder than most people think. I would really appreciate your feedback and if you can tell me how your son was diagnosed. -mom of food allergy child
Hi I am Michelle I live in the Uk and I have three children with EE,EC and ED. Two of the children are tube fed and on EO28 Extra only and my daughter is on a restricted diet. Our eldest is 12 and he has been reaaly poorly with a flare up since Jan he has not been able to attend school as he is so weak and tired. As I write this all of the children are having a flare. It is heartbreaking to see your children suffer every day of there lives. All the children are on a cocktail of drugs. My thoughts are with you and your family as dealing with this condition is not a daily job it is an hourly job.
For the mom of Jack the 9 month old; mom posted at 12:22 am... I have a son, Jayden who just turned 3 months and we are facing many of the same issues as Jack. He was born a big boy and I think that is what is helping him now. We went the Nutramagin route and are at a point where he refuses to eat the Nutramagin. Just came back from the doctor and I am awaiting a call from a feeding center to see if they want to do some of the preliminary tests (barium, endoscopy or if he should go straight to Hershey Medical Cntr for a biopsy and see a specialist). For you and the other parents out there are there any questions I should ask at this point? I am a bit shell shocked.
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