The lastest peice of the puzzle is that Megan may have an eosiniphilic disorder causing her choking and gagging. She is a heart patient, so things get complicated. She also has celiac. The GI specialist wants to do a scope to test for eosiniphils. I think we're finally where we should have been a year ago. Half the drs. say it's too hard on her heart and the other half say it would be no issue. I just don't know what to do. If she does have eosiniphils in high numbers the course of treatment would include eliminating the offending foods, but sometimes prednizone is needed to speed the healing. Her next open heart surgery is in August and we would love to get the gagging/wretching under control by then so she doesn't have to endure that pain. I just don't know what to do.

Skin testing showed no allergies, but RAST testing showed a moderate allergy to milk and eggs. Those are now elimintated, along with gluten. Her gagging my have improved ever so slightly, but we don't see any real difference. We're just desperate to help her.

Do any of you have experience with EE, EG, or something similar? Do you have any advice? http://www.glutenfreeforum.com/style_emoticons/default/unsure.gif

I do know for sure that Menfusse(Melissa) is going through this exact same thing...along with Carla.

I am sure they wouldn't mind if you PM'd them....since noone has responded to your post yet!

As Stacey said Melissa is one to talk to for sure. I know that Carla and I are having our children investigated for this right now but I can only offer what I have learned in researching.

We can share information here as it is hard to find information on it.

Tough call on the scopes. Which way are you leaning? August is not so far away right now (it is when your child is so sick though!) so maybe you can have her scoped at the time of the surgery for her heart? Is that possible?

I already tried to get them to do it then, but the surgery is going to be a very long one and they don't want anything to take any more time. They also won't allow any procedure to be done for a minimum of 6 weeks post surgery, so we're looking at Oct. or Nov. if we don't do it now. She was very slow to recover from the last surgery. I think this was becuase of the celiac, but can't know for sure. Hopefully this one will go better. I just can't help but wonder if finding something in the scope would help with the recovery. But I'm also afraid that this could put her heart into a tailspin.

I really don't know what to say. It sounds like a rock and a hard place situation and I see the benefits both ways. Are they pushing to do it now? They must think something will be found to help her out?

Hi Tanya,
Sorry it took me a little while to see this post. Leigh is right, both my children are being investigated for this, but I have researched A LOT. Melissa (menefuse) is the only one on IRD who has an official diagnosis.

My advice for your situation would be to skp the scope and do the standard protocol for treating and eosinophilic disorder. You may not like what that is----but it is Neocate or Elecare ONLY for 8-12 weeks. NOTHING else, not even breastmilk. Since she is tube fed, taste wont be an issue. Typically, they scope first--go on the neocate diet for 8-12 weeks, get rescoped when symptoms have stopped, then begin single food trials for two weeks at a time. It is a hard thing to go through I imagine, epecially giving up breastfeeding when you dont know for sure that this treatment will be what she needs (because you are going on an assumption that this is what she has, not true knowledge). But, with her heart condition and upcoming surgery, I would think given your options this is the best choice of all the not good choices. You wouldnt even need to begin the food trials if you couldn't due to the heart surgery, etc. You could just stick with the elemental formula in the tube for at least 12 weeks (being on the longer side since you wouldnt be rescoping) and go longer if needed until you are ready to begin the trials.

I would talk to the GI about this idea to see what he thinks. With the steroid treatment, it gets even tougher because on one side, you could say that if she responds to the treatment of neocate only throughout the 8-12 weeks, she clearly doesnt need the steroid. BUT if she doesnt completely respond, you will wonder if she needs the steroid or if she has a different problem, or an additional problem. You will wonder what she needs at that point, and then it would be too close to the heart surgery to do the scope.

I agree what a hard place! What does your mommy instinct say????

Gosh, I really don't know what to tell you. My Em has eosinophilic enteritis. Her treatment so far has been going to Neocate formula ONLY and no food or protein of any kind for a few months. Then we are ading onefood back at a time very slowly after we see an allergist. We have been fighting using steroids, but right now it is looking inevitable.

You have a whole lot more to consider in your situation. Would it possible, given her heart situation to treat her as if she did have EGID without scoping? I really don't know how breast feeding factors into this. It would super hard, I bet, to get her to take Neocate after being breast fed. The problem with an elimination diet, is that she only tested postive for milk and eggs and you have already eliminated those without much improvement. So they next step would likely be the elemental diet. Which might open up a whole new slew of problems with her, if she refuses the formula. Also, if it is necesscary to use steroids, how would that impact her upcoming heart surger...in terms of immunity? You have so much to consider. I don't know if I am any help, other than knowing something about eosinophilic disorders. Feel free to pm me if you have any questions. I don't know if I can answer them, but I will sure try!

I just now see that she is tube fed, so taste isn't an issue. It will be more of a decision to give up breast feeding on your part then. It is definately a tough call for you.

Thanks for all your replies. I've been praying hard for answers. I've learned the hard way to follow my gut and appreciate you reminding me of that.

Here's the problems with the suggestions about neocate and elecare - we've tried both of them and she got violently ill. You name it and we've tried it as far as formulas go. Because of all her issues she is not eating anything yet, but gets breast milk mixed with pureed avocado in her feeding tube at night. She takes about 4 - 1.5 oz. bottles during the day with rice ceareal. Everything I'm adding is strictly to get more calories in her. Her heart has to work so hard to pump that it burns extra calories.

We tried supplementing with EVERYTHING and it all made her sick. So far we've tried: Enfamil, Similac, Pregestimil, Alimentum (ready mix and powder),nutramagin, Elecare, Neocate, polycose, mct oil, corn oil, olive oil, and compleat pediatric. AFter doing some research I decided to try the avocado pureed and mixed in with the breast milk. It is the only thing she can tolerate. She was having some constipation, so I added some prunes to the mix and that has worked well when needed. This has helped her gain weight well, but the gagging and retching are still present. And yes, we have tried only neocate for what was supposed to be 3 days, but it was stopped after 1 because she was sooooo sick.

When I speak of food eliminations, I mean from my diet since she is breast fed. I pump for her since she will not nurse at all. I eliminated gluten 9/05 and she had immediate positive results. She finally started gaining weight and it was wonderful. I just wish I had figured that out earlier.

The only common ingredient I see in all these formulas is corn syrup solids (with the exception of Aliment RTU which has casein). She has positive allergy tests for milk and eggs, which I have now eliminated from my diet too. I wonder if corn could be causing a problem and plan to try that for elimination next. I know the proteins are supposed to be hydrolysed in the formulas, but it's the only common thread I can find. The drs. think this is a logical next step.

Any suggestions are appreciated. I'm just at my wit's end!!!!

I would do the corn elimination. If that doesnt work, I would keep in mind that at least some of the retching could be from a motility disorder in her esophagus/stomach caused by the fundo. There is something called viceral hypersensitivity that is somewhat like a chronic pain syndrome. The nerves n the gi tract will misfire pain signals when there is no pain, and the brain in response will send signals to the cells responsible for inflammation to the area to do just that. This triggers the esophagus, stomach, and intestines to spasm. One type of a spasm is to retch/vomit. The only way to stop the cycle is to quiet the nerves in the area through a medication like nortriptyline. It relaxes the nerves in the gi tract so that they stop firing pain signals. Then the retching stops. The only thing is that she could have an eosinophilic disorder and still have the nortriptyline be effective in stopping the retching and vomiting. There would still be the question of why does she vomit and retch. This is exactly where we are with Chelsea and why we are doing the scope. She just doesnt have a heart condition though!

Did you ask about her being able to use nortriptyline?

We've done what the dr. calls a poor man's motility test. After she eats, we check her tube and see how much is in her stomach. It is all clear after 30-45 mins, so that doesn't seem to indicate motility issues. The barium swallows (3) didn't show any motility issues either. She was later put on Reglan, but that was for the retching. He said he doesn't see any indication of motility problems, so doesn't see putting her through those tests.

I called the gi back this morning to talk one more time, still waiting to hear back. I spoke with her primary cardiologist and he's for the scope. I checked and her heart surgeon will be out of town on the date they have scheduled for now, so I won't let them do it then. I want us to go in prepared for her to have her surgery if we do it at all.

The nerve theory is very interesting. One resident had a theory that it is an over exaggerated vagal (sp?) response from that nerve. The nerve runs down through the thoracic cavity and multiple surgeries, like open heart, 2 heart caths, and the fundo, could have just irritated it so badly that it's causing the gagging and retching. It sounds similar to what you suggest. She hasn't had anything done since Nov., though and there's no imporovement.

As for other meds., the GI dr. was hesitant to introduce any other meds without seeing if they were needed via scope. I'll ask when he calls me back today, though. Thanks for the suggestion.

I get online when I pump and since I've started typing this message, she's retched 3 times. It just kills me.

I think I will start the corn elimination. I don't know what else to do. I worry that by doing eliminations it will influence the scope results, so I'm torn. Another question for the dr. I wish I could just get them to do it next week and get it over with so I could go on with the trials.

Tanya,
If there was nerve damage, there wouldn't necessarily be any improvement. The nerves can be permanently damaged. It sounds like what he was saying is essentially the same thing I was saying. My daughter's last fundo was 19 months ago and she still exibits symptoms of possible nerve damage. Like I said, sometimes there is permanent damage.

Also, she can have a motility disorder in her esophagus without there being one in her stomach. It does not have to be an issue of slow or fast. She can be having muscle spasms in her esophagus because of the fundo. If the esophageal nerves were damaged during the fundo, they may not work right. So instead of doing rhythmic peristalsis contractions, they can be weak, irregular, and cause the muscles of the esopahgus to spasm or "cramp up". This would cause the gagging and retching.

I am not saying she does not have an Eosinophilic Disease, just that this may be a possibility.

I have no idea which it is for Chelsea. Maybe it is more than one reason for Chelsea and for your daughter. Just some things to consider.....

Carla - Thanks so much for the info. you really are an answered prayer. It has been sooooo hard to figure all of this out and the drs. really don't know. We're going to Vanderbilt in Nashville, TN. What hospital do you use? I've heard Cinicinnati is really good. I just wonder if we should take Megan somewhere else???? I only hesitate because of her heart. She is a very complicated case and I'm not sure how smart it would be to just start over somewhere else.

I think you're right about it being many issues. My husband and I were talking about that last night. Finding the celiac was the biggest factor because now she is actually gaining weight. Of all her issues, the gagging and wretching is the least detrimental, but it probably causes her the most pain on a day to day basis.

It started a couple months out from surgery. I wonder if it would take that long of a delay for the nerves to start giving her problems. I do think it is a possibility, though. I spoke with the GI nurse last night and mentioned this to her. She was going to ask the dr. and call us back today. haven't heard yet. They're also trying to get her scope in next week. We'll see how it goes....

Your welcome! I am glad I can help. Chelsea started the gagging and retching a couple months after her fundo as well. So it sounds like it could be the nerve damage. BUT we are scoping her too for an eosinophilic disease, so I dont know the reason for Chelsea just yet. It could be one or both. I have just been considering all the possibilities for Chelsea.

We go to UCLA Medical Center in Los Angeles. We started seeing the Chief of Pediatric GI there. He is GREAT. He actually made a diagnosis of celiac on some famous football player's daughter that saved her life. Everyone else had missed it. He is very well known and respected by many doctors across our country. His name is Dr. Marvin Ament. We originally were seeing some GI's in orange county, where we live. We had issues with them, to keep it simple, so we left. Los Angeles in where I grew up and my parents still live there, so we make the 2 hour commute. Cincinatti would be a great place to go as well. I have a friend who did not agree with another GI at UCLA, so she went to Cincinatti without havng an eosinophilic disease, and she raved about the place. That may be closer to you then LA....I dont know my memory for geography is not so great!

Vanderbilt is good though, isnt?

Finally got to talk to the gi this morning. We're doing a 24-36 hr. pedialite trial to see if the choking stops. So far no choking for 3 hrs - WOW. I don't know if it's related or not, but WOW! If she responds to this, it means there are probably some allergy/eosiniphilic issues that we're missing. he had rather do the trial for a week, but we HAVE to get weight on her for surgery, so that's just not doable. In the mean time, I'm also going off corn to see if that will make a difference. The scope is still questionable and the drs. are going to get together to talk about it. He's now decided to do the gastric emptying test, so we're working on scheduling that.

I mentioned the nerve thing and nortriptyline. he said this drug can cause side effects with heart arrythmias. Meg already has trouble with this, so the med is off limits for her. He said it is a possibility, but almost impossible to test for in one as small as her. It was a good idea, though!

If anyone has any ideas as to what might be causing food reactions, let me know. So far I have eliminated gluten, milk, eggs, and corn completely from my diet. I have tried nut, strawberry, soy, and rice eliminations in the past with no noticeable difference. Let me know if you can think of anything!

Thanks for the help so far!

How about tomatoes and oranges? They are acidic, but also allergenic. often times is seems that kids with EE dont tolerate a lot of foods you wouldnt think of. I would like at fruits, they seem to be a common one. I hope they do the scope soon and I hope it goes well. Let us know what happens! I would also isolate specific meats. My ped told me that chicken and turkey were more allergenic than sirloin beef and lamb. There is also veal. Perhaps it is a meat. I read a journal article on a patient who had EE and when they took beef out of her diet, she was fine and the EE cleared. Sometimes it is that simple......wouldnt it be nice if it were that simple for our kids??????

Last night I found the website and learned of the TED. The Elimination Diet. You start out eating only turkey, lamb, sweet potatoes, rice, millet, green and yellow squash, and pears. You add one food at a time to see what causes reactions. I started it this morning.

Below is a post I put there with my new plan:

Ok. I've slept on it and I think I now have a plan. Meg ran on 60 ml/hr pedialyte all night. For the first night in over a year, Megan did not retch one time!!!!!!!!!!!!! Happy Happy Joy Joy!!!!!!!!!!!!!!!

So, this tells me we are probably dealing with food allergies/intolerances.

I have been supplementing her breast milk with pureed avocado in her overnight feeds. It is the ONLY thing I've found that she doesn't just projectile vomit and it's got so much fat and calories. The drs. thought I was weird when I tried it at first, but hey, it works! She's gaining weight, so now they're all pro avocado.

For the past 24 hrs. she's only had pedialyte. Today I think I'll give her pedialyte with avocado so she can get some calories in her. It is imperative that she maintain/gain weight with the open heart surgery coming up.

I'm starting the TED 10 mins. ago. I'm sitting here munching on my canned pears. I'll start giving her that milk in the morning and see how she reacts. I'm trying to give myself a day to get things out of my system. I know longer would be ideal, but I'm working with what I can here.

If the gagging contiues to subside, I'll start adding one food at a time back and go from there. If this stops the gagging, we can cancel the scope next month and not have to worry about putting her to sleep with her heart and all.

If it doesn't subside, I'll add everything but gluten, dairy, and egg back into my diet in 2 weeks in prep for the scope.

Does this sound like a reasonable plan?

One other question: Since she toelrated pedialyte all night, does that mean she's ok with corn?

It's early and haven't had my coffee yet but why would being on pedialyte mean she can have corn--is there corn syrup in it? Ours doesn't.

I dont know why I didnt ever think of this, that is the elimination diet in Dr Sears' Fussy Baby Book. I am so glad you found that and wish I would have remembered to tell you about it earlier!

I would say no to the corn. If you read what it says in his book, it says that corn is a fuss food. It says after you have done the foods you listed for two weeks, you should start with food like sunflower seeds, carrots, lettuce, salmon, barley, grapes, avocados, and peaches. He says wait for awhile to add wheat, chicken, beef, eggs, nuts, and corn. Avoid for the longest time dairy, soy, peanuts, shelffish, coffee, tea, cola, chocolate, gas producing veges like broccoli, cauliflower, cabbage, onions, and green peppers, tomatoes and citrus fruits. Then it says that fruits and veggies are usually more tolerated in its cooked form rather than raw.

Obviously you wouldnt get as far as all the foods he lsted, but hopefully you will find a diet she can tolerate and that you will handle too! Gosh this is taking me back to the days when I started noticing that Gavin really wasnt tolerating anything. I never tried this diet specifically because I hate lamb and couldnt fathom having tukey for breakfast lunch and dinner. I need to have a protein with every meal because I have low blood sugar. I thought too much turkey could irritate him because it seems like too much of anything in your breastmilk does that. He does well on Neoacte though and it is paid for by our insurance...confirmation to me that it was the right choice!

I sure hope this works, you could avoid the scope. In a sense that is what we are doing with Gavin--doing the diet to avoid the scope. If he has mastocyosis, the scope could be dangerous for him as well. We also dont want to put him through that if we dont have to. Part of me wants to do this with Chelsea without scoping her, but I dont know.

BTW, Gavin doesnt tolerate pears....you may want to start with just the potatos and meat. That is how he is starting...his schedule is lamb, ground sirloin (only because it is the only one he hasnt tried), boiled white potatoe, then sweet potatoe. Fruits can be a hard one but maybe you could supplement instead with juice plus??

They told me on the allergy website that Dextrose that is in pedialyte is from corn.

Someone recommended the Dr. Sears website. I'm trying it. I can't find organic turkey anywhere!!!! I'm trying venison instead. I live in the country and venison is a lot easier to come by!:wink: It was low on the allergy scale.

I've already started on pears! I hope it's ok! I also found one mom whose daugther couldn't handle elecare or neocate until she started mixing them with pedialyte. She said it was just a fluke thing, but i worked. I'm debating on trying that.

What did you mean by supplementing with juice plus?

I am also hypglycemic. I hadn't had any protein today until a few mins ago when my hubby grilled me some venison. I feel soooooo much better now.

gotta run for now, but I'll keep you posted on how it's going. any ideas are welcome and appreciated.

Okay so you are just way dedicated. I suppose had neocate or elecare worked perhaps you wouldnt be so motivated?! You are awesome for being able to do all this:wink: .

I didnt know about dextrose...thanks for that info. Also, venison? What is that???? Perhaps a difference between Southern California and Alabama!!!!:wink: AHHHH I just remembered Sweet Home Alabama--is where you live anything like that? LOL it is one of my favorite movies, so dont think I am making fun of you.....just poking a little fun.

Anyway, so you will know soon enough if the pears are okay or not. They are supposed to be okay! But my son is interesting. I honestly am starting to think that it isnt necessarily the food, he has been getting the same reaction to seriously nothing. He was running around the living room laughing with his sister's sunglasses on and he got a big welt on his cheek. All he had was neocate and it was awhile before it even happened. Then when he was eating a graham cracker earlier that morning, he had another. It just seems like it would be impossible to know what brings all of this on. He is SO fussy right now because he is getting his 4th molar, so it hard to know what is what with him at the moment.

Juice Plus is also found on Dr Sears website. Check it out....it is a great fruit and veggie supplement. Just type in juice plus in his search bar. Dr Sears goes to my church and his office is a mile from here. He lives in San Clemente as well (where I live). I dont go to his office though, the Dad (Bill or William) is AWESOME but the sons are a little inexperienced to handle my children.:wink: They are nice though and big on recognizing reflux. My kids just have too many issues.

The neocate mixed with pedialyte is interesting.....I actually did that when Gavin was in the hospital for dehydration. He stopped breastfeeding and refused formula, so he got an electrolyte imbalance. They hydrated him with IV fluids for 3 days then gave him pedialyte, then we mixed pedialyte with neocate gradually taking out the pedialyte over two more days. It worked like a charm. Maybe you want to try it. I wonder if it is too heavy for her...maybe why breastmilk works. It may not hurt to try it again, I dont know.

You got it! My motivation comes from the fact that my daughter can tolerate NOTHING!!!!!!!! I'm pro breastfeeding and all that, just didn't think I'd be hooked up to a machine until she's 10!!!!! At least that's the way it's starting to feel!!!!!!

Any good southern girl can take a little teasing! :wink: Actually venison is deer. And yes, my brother did shoot it. Just a different way of life. Sweet Home Alabama is actually pretty close in a lot of ways. I live out in the boonies and love it! I've been to CA a couple times. Nice place visit, but I do prefer Sweet Home Alabama.....:wink:

I may try Neocate again, but I think I'll get the Infant version. Maybe it's gentler than the 1 + we tried. I'm going to see how she does on the breast milk and avocado tonight.

She's been screaming like a banchee and i couldn't figure out what was going on. Turns out a molar came through this morning. This might even help explain the terrible week we had last week. It's so hard with these kids to figure out if they're in pain over something life threatening, or something simple like a tooth. I'll be so glad when she can tell me!!!!!!!!!!!!!!!

How are things going? Gavin is breaking a molar too right now, it is frustrating. I noticed with him that if it is teething, tylenol takes it away within 30 minutes of giving it to him. If it doesnt work, I know it is something else. It also helps to see the swollen bump on his gums....:wink:

Today has been the most frustrating days I've had in a long time, and I have a lot of frustrating days. Meg went NPO at 2am for the motility test this morning. When her stomach is empty, she retches more, so she retched about 25 times between then and the appt. at 8 am. I got up at 4 in order to get all of us ready and in the car by 5:15 to pick up the sitter I had hired to ride with us to watch my son during the 2 hr. test. My son wet his pants before we even got 3 mi. from the house, so had to stop and clean all that up. Hubby put him in car without taking him to the bathroom first (GRRRRR). Finally got to sitter's house and she said she knew a better way to get to the interstate from her house, but she got lost. Thankfully, I'm pretty good with directions and got us back on track only losing about 20 mins. About 5 miles after getting on, there was terrible accident and traffic had stopped. Finally got to the hospital, 5 mins. late. Good thing I left really early and drove like a mad woman!!!!

We get into the nuclear med room for the test. They lay her on a table flat of her back and strap her to it, screaming her head off. I told the tech that she had horrible reflux and was going to throw up if he didn't raise her up and get her calmed down. He gave me that, "this is my job" look and told me it would be fine. He started putting the solution in and she immediately threw up. He said very nonchalantly, "Well, we can't do the test today since she threw up. No way it would be accurate. If we have any openings on Friday she can come back in since the radioactive material will be out of her system by then. Check with your dr."

I burst into tears. I proceeded to explain to him that it wasn't quite that simple and we had driven 2.5 hrs. to get there and that she had retched all morning b/c of being NPO. He said there was nothing he could do. I was so furious. I made it to the lobby before completely falling apart.

I called the dr. office and am waiting to hear back as to what we should do next. I checked and our local pediatric hospital can do this test, so that may be what we do. It's not as good of a hospital, though and I don't want the test to be read wrong. It's a catch 22.

I just feel so defeated. The TED is not working at all. I'm doing everything I know to do and it's just not enough. I've been running her on continuous feeds to see if that will help. I also managed to get ahold of some Neocate Infant to try. I'm scared it will make her sick, but we've got to do something. She's only gained 2 oz. in 2 weeks from mucking with her feeds.

My milk production is dropping like crazy on this diet and I've been pumping more. It's about half of what it was. I've got to come off of it to have enough milk. I'm so torn!!!!

Sorry to come unglued. It's just been a very tough day.

That does sound like a really tough day, I am so sorry that it is that difficult. I hope that everything goes well for Friday- poor little baby.

I am sorry Tanya! What a horrible experience! I hope it goes better for you the next time around, assuming you still have plans to do it. At UCLA, they lay down for a few seconds to take a picture, then they are able to get back up for 15 minutes. They do this in 15 minute increments for 90 minutes, then it is done. So much eaiser then the way most places do it. With Gavin up and around, it still showed a severe delay...only 20 percent emptied after 90 minutes, and that was only neocate formula.

Have you tried the neocate yet? I *think* that if she tolerates it and you are able to stop pumping, your stress level may go way down. That is about where I was when things were going horribly with Gavin. Taking that pressure off my plate amongst all the things I had no control over, helped A LOT. I sure hope you find something to help both of you out soon.

BIG HUGS!!!!!:hug: