Ever heard of Eosinophilic esophagitis o EE

[Anonymous]

Has anyone every had any first hand experience with Eosinophilic esophagitis? I am in the process of getting my DS diagnosed. The last doctor (a diagnostic doctor at Children’s Hospital in Chicago) has refer me to a GI specialist since he thinks my son might have this disorder. My question is, do babies still eat a lot with this? I ask because he does have most of the symptoms of EE except the failure to thrive. He is 22 lbs and only 8 months old. He eats A LOT. I believe he is a “comfort” eater as he still wants to eat in the middle of the night. He has yet to sleep through the night. He is on previcid 2x day but that doesn’t help much. We have issues with him “fighting” a bottle. We are fortunate enough that he doesn’t quit fighting until the bottle is gone. He will just cry his way through it most of the time. I should note he has had his aednoids removed and ear tubes put in at 6months old. This made a huge improvement since he had a 4 month long ear infections which was making the feedings that much harder. HIs symptoms:

• Fights the bottle – pulls it in and out and just seems to run out of breath while eating
• Gets very congestion after eating and coughs a lot
• Spits up almost exactly 2 hours after eating
• Is never full – will eat until you stop him most days
• Very bad sleeper (and yes, I have tried the cry it out theory – one night he cried for over 2 hours straight)
• Is very inconsistant with his symptoms. He will have a few goods days and then a really bad week.

Anyway, any first hand information from you parents would be great. I have read a lot on this but want to hear a “real” life story of it.

Oh – he also testing negative to a enviromental and food allergy test done at 6 months.

[Anonymous]

I can’t answer your main question b/c I don’t know the answer…BUT…

I did want to mention that although your son had environmental and food allergy testing that came back negative, that may not be true. Allergy testing is NOT accurate until atleast 2-3 years old. Also, most blood testing is false/negative. So, given his symptoms…I’d think he was reacting to milk. The congestion, cough, poor sleeper, constant ear infections. It really kind of points to allergy, JMO. How are his stools? Stinky gas? Also, what dose of prevacid is he on?

[Anonymous]

I have heard that about the allergy testing but I think his doctors were just running out of things to try. I literately had two standing in front of me saying they didn’t know why his ears were still infected! We have dnoe 21 prescriptions and about 20 dr visits since Jan. We are now on to specialists. It is a really long story.

We have had him on Alimentum with no change. However, it was at the worst time with all his symptoms in full on mode. He has gotten a lot better since the surgery. He has been on regular goodstart now since May 1 with no change either way.

His stools are mostly normal now that we were able to stop all the antibiotics. They were runny and very smelly before that but I really think that was a side effect of all the drugs. He has had (4) different antibiotics twice over. We have since changes peds since I thought that was insane.

He is on Prevacid .5 tbls twice a day. I give it to him about 45 minutes before breakfast and then again before his 7:30pm bottle. I think it helps a little but doesn’t make him any more comfortable while eating.

As a side note – I had to take the rice cereal out of his bottle when he had all the ear infections. He couldn’t suck that hard at all without screaming in pain. It didn’t seem to make that much of a difference except he could at least get the food out. That was even with a fast flow nipple.

acpaop2009-06-30 15:15:07

[Anonymous]

The dose of prevacid is low. Maybe take a peek at marci-kids.com to see what dose would be best for his age/size? He seems to still be in a lot of pain on that dose. Also, compounded meds loose their stability rather quickly. How long have you been using this bottle? Any longer than 2 weeks and it’s possible it’s not working at all for him.

With refluxers it’s not uncommon to have ear infections b/c when they reflux the fluid can run up and into the ear canal. Does he sleep elevated?

As far as the allergy thing goes, he has a lot of other symptoms that fit. I don’t know…

[Anonymous]

I have heard of EE. I thought my dd had this due to all her food issues. You might want to talk to your doctor about a formula change maybe Elecare or Neocate and see if that help him feel better (do formula change after endoscopy testing). Also an endoscopy will be very helpful in detecting any issues in the intestines, stomach and esophagus (Sp?). Here is some more info about EE and related disorder.

http://www.apfed.org/egid.htm

[Anonymous]

You know, now that Leo mentioned it…I do remember the correlation b/t EE and food allergies. So, it’s really something you should look into more, JMO. 🙂

[hellbennt]

yes maybe time to get an endoscopy? if you haven’t and even a ph probe called an impedance probe now- the endoscopy will let you know what is going on in the esophogus and they take biopsies if there are eos cells present then you’ll know what you are dealing with. the probe measures the acid strenght & length of reflux episode- I think I’ve explained the gist of it…

but really I’d work on the testing and getting meds RIGHT http://www.marci-kids.com and given PROPERLY

Prevacid 101(last post on the page): https://www.infantreflux.org/forum/forum_posts.asp?TID=1936&PN=0&TPN=1

in the meantime, maybe ask about carafate. it’s a short-term ‘band-aid’ solution meaning it will help in the short term as you get meds & formula figured out and helps w/ letting hte esopogus heal but it is NOT meant for long term use…

hellbennt2009-06-30 20:44:03

[Anonymous]

Thank you to everyone for your imput. I truely do appreciate any information since the doctors all treat you like your are crazy most of the time!

He is scheduled to see the GI on July 21st (first available but we are on a waiting list). After that I am sure he will get the scope done. He has already had a swallow study and an upper GI done with negative results. I am at a lost on the result though since one hospital (St. Joes by my house) did the first one and came up with result of a narrowing esophagus. The second (swallow study) was done at Children’s hospital with negative results. The Children’s Hospital doctor told me the original hospital read the test wrong and that they were both negative. I have no idea on who to believe anymore. I am hopiong for better luck with the GI docotor.

As for the EE – I have read that about 10% of reflux children have EE. I am just wondering if he has EE with reflux or is the reflux a symptom of EE?? Too many questions. They (the docs) also think he may have asthma which relates to the EE. This isn’t a far stretch since I have asthma and was really bad as a child. I will have to just wait yet another month to see if this diagnosis sticks since none of the others have. I have read almost everything I could find on EE. I have logged a lot of hours on the APFED site which does have a lot of information on it. He just doesn’t have that failure to thrive that everyone keeps talking about.

As for the formula – I still have two cans of Alimentum but was afraid to switch right before the new Dr. sees him. If he comes up with new symptoms I won’t know if they are formula related or not. Does that make sense??

Meds – I will have to ask the doctor about the meds. He has his nine month check next week [I think :-)]. We are still doing some catch-up on his shots since he was so sick and skipped some.

I have just never seen a kid who has no other symptom of reflux or being uncomfortable except when eating and sleeping. He is fine right after he eats and most people think I am crazy becuase he is happy all the time. When my daughter was refluxing she hated everyone and everything! There was nothing to make her happy. I would have sworn it was a swallowing problem?

[Anonymous]

Reflux is a sign that something is wrong in the gut, wether it is food allergies, EE or something else. i would not change formula until you have the scope done. In the mean time i would try the meds suggested by Laura to alliviate the pain cuased by reflux. EE affect people different, so i would not disminish it just beacuse he eats well.

i would suggest you hold off on his vaccinations until you have some more anwers. vaccinations will put even more pressure on the immune system and might make his symptoms worst. That’s juts my opinion though.

[Anonymous]

There is a good group for moms with EE kids here:

http://health.groups.yahoo.com/group/ACED/

I am sure the moms on that group would be very helpful in answering your questions.

Good luck,

Julie

[Anonymous]

Slightly tangental…does you baby thrash around while trying to go to sleep? i.e. turn head side to side repetatively, rub at face? Just curious. thanks.

[Anonymous]

Funny you should ask. I just hand to check him because he hit his head on the crib headboard. He travels the entire crib all night long. He does stay asleep for most of it though.

He has to have a blanket or something close to his face to fall asleep and really doesn’t like to be held. He will cry for maybe a minute or two and then fall asleep on most night. Other nights it takes an hour of crying then he will pass out.

I believe someone also asked if I incline him to sleep. I have not had any luck in doing that. Have tried the traditional methods of elevating the head of the crib but he moves around so much that he would just end up at the bottom. He is too big to sleep in a swing and doesn’t like the carseat for long periods because he is a stomach sleeper for the most part.
acpaop2009-06-30 23:25:05

[Anonymous]

Did the Prevacid help some, but not completely aleviate symptoms/aversions? My daughter has not had any procedures yet but is on prevacid for suspected silent reflux. Her pain seems better at times, but still does not feed well awake. She thrashes a great deal in her sleep, rubs her face, etc. I am pondering an upper endoscopy to rule out/in EE.

I am starting caracream today with her prevacid. We had just been giving her the capsules alone; she took them very well. It is hard though to make sure the granules are taken on an empty stomach and at least 30 minutes before a meal.

[Anonymous]

The Prevacid helps slightly. We didn’t know how much until we took him off it for a week. When he is not on it he will have a really hard time sleeping. It however, doesn’t make a difference in how he drinks his bottles. I am not sure I am on the same prevacid as everyone else. I couldn’t find it in the list on the marco-kids site. He has a 3ml suspension which he gets 1/2 tsp 2xday.

a quick history
At 3 months (starting in a daycare) he got an ear infection with a cold. We treating it with anitbiotics and it went away for about a week and then came right back. He did this for about months until he had his surgery. We 21 prescriptions (anitobics, steriods for wheezing, and reflux meds) with no change at all. The ENT said his adnoids were ruin from what he believed was silent reflux. We went to a new peditrican and were sent for testing. They testing for cystic fibrosis, an immune problem, and gerneral blood work. He also had two upper GIs. All basically came back negative. That is were we are today. Wainting to see the GI specialist and do a scope to find out if the congestion and feeding problems are due to EE.

He is what I call a nervous eater. He has never held his bottle since he needs his hands to rub his face and ears while eating. He will also “ring” his hands out so hard that they will be red by the end of a bottle. This is a good feeding. The bad one is him crying and pulling the bottle out only to take it back and shove it back in again. It is like he reallys wants to eat but can’t breath and swallow for some reason every though his sinuses are clear. He use to only do this at his last feeding for the day but has gotten worse over the last couple of weeks. I would say 50% of his bottles are bad ones. Does anyone else have a child who eats like this?? He will sometimes do the same while eating puffs and other self eating foods. He will shove them in like he hasn’t been feed in a week but then cry while swallowing or right after swallowing.

[Anonymous]

Oh by the way Becky – I love the name Wyatt! That was one of my “other” picks for my son but the hubby said no 🙁

[Author]

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