Elemental diet + feeding tube?

[JSerene]

Hi all. My 4 year old has been dx'd with eosiniphilic esophagitis. We have started prevacid and flovent to help her esophagus heal from all the damage. She has many food allergies and the next step to help her heal may be an elemental diet. My doctor tells me the formula tastes terrible and most kids need to have a feeding tube to stay on the diet. Has anyone had a little one on this diet without the feeding tube? She has no trouble swallowing, it's just a matter of getting her to drink it.

I would love to hear of others experiences. Thanks. Jen.

[MotherWhimsey]

some of the formulas come in flavored varieties. Look into neocate splash. It's like a fruit flavored juice box of elemental formula and a lot of kids will drink that with no problem. I'd give that a try before anything else.

[queencarr]

My 11yo has EE. Subbing cuz cant post now, will be back. Crying 2yo

[queencarr]

Ok, 2yo settled

My 11 yo DS was dx with EE about 1 1/2y ago, through a routine upper GI scope that he has for his reflux. He ended up having to have an esophageal dilation with another scope because his esophagus was closing a little less than a year ago, but was asymptomatic for a while prior to that. He proably had EE for much longer, but was not picked up in the scopes (from the biopsies done) because he took just enough steroids off and on for asthma that he masked it. I, too, was very concerned about having to go the elemental formula/feeding tube route. But we did not have to.

We have a ped GI that we have seen for years, because of the severe reflux. He got scopes 1x a year routinely to monitor damage, etc. It was very hard to treat--at one point, he was taking 30mg prevacid 2x a day AND 4 dose of reglan per day and still had breakthrough because the damage was still slowly healing and so severe. We could not wean him off the reglan despite the black box warning of neuro problems, so he took it for about 5y (label recommends no longer than 3m max). After the dilation, we went to a very good allergist who works with more difficult peds cases (she also treats my 2 yo who had to have scratch allergy testing at 15m due to life-threatening reactions). Allergy testing--it needs to be scratch, not bloodwork BTW, and to foods that they have been exposed to at least once, preferable recently, to avoid false positives--showed he was allergic to 33 foods and all environments and animals tested. We discussed elemental formula with her, and she said that she only treats that way as a last resort when everything else fails. It is difficult to stick with for a child who is already eating solid food, and yes, often results in a feeding tube to get enough nutrition. I will say that she is big into keeping reasonable normal life, and not going overboard unless necessary. So, for example my 2yo has lifethreatening egg allergies--she recc no vaxes, even the ones that don't contain egg ingredients, because of potential cross contamination issues. However, although the one with EE tested highly positive to dogs, she said we can have an indoor one with some precautions, and can do sleepovers at friends with dogs, take extra meds temporarily then, etc. So that give you an idea of her philosophy and approach.

So here is our game plan. DS continued his prevacid, at 15mg 2x a day. We added symbicort (contains flovent plus another med) 80 mg 1 puff 2x/day as he needed the combo for his undertreated asthma. Normally, it requires a swish and spit after dosing, but instead he swallows it because that is the protocol for EE. He also takes singulair 10mg once a day. It works to treat asthma/allergies by controlling eosinophils, and although it is experimental for EE, she said the research is really good, as is the anecdotal evidence, that it helps with EE a lot. At any rate, it also treated his asthma again, and helps with his environmental allergies. We are to avoid the 1 food he reacted very strongly to on the test, but he can eat the mild reactive ones, as the steroids, etc. control it well enough at this point (BUT no binging on reactive foods, keep in a reasonable rotation in his diet, avoid anything that seems to cause a problem that we notice). Her reasoning for not even attempting a full withdrawal, beside the fact that it was nearly all fruits and veggies and would be virtually impossible to maintain, was that he was reactive enough to the environmentals that we would have to do the steroids, etc. route anyway. He will continue to get regular scopes every couple of years, sooner if he feels his throat closing or he has trouble swallowing again, or if he develops a chronic unexplained cough again (his first symptom). After having had no luck weaning off the reglan for 5 years, he was able to wean down to nothing within weeks!!!

So, after that very long explanation, my recommendations are this: find a Ped GI AND a ped allergist who are experienced with treating EE AND that will work together to treat your child individually. Many allergists are not really familiar with this type of allergy, so do some research and call around. My guess is that if they did not suggest singulair they may not be up on the most current research, unless there is a reason to not use it in your child. FWIW, adding the singulair meant that for DS, his steroid dose is currently half of what would be expected to treat at his weight, and is controlling it well despite not pulling the foods. Also, short term, high dose prevacid or similar may be needed to heal the erosion and damage. I think DS ended up taking a very high dose for a few months, then tapering over a year or so (this was prior to the EE dx). At any rate, the treatment and maintenance dose will not necessarily be the same.

Good luck, and feel free to ask any questions. There is another mama who has dealt extensively with EE, USamma, I think. You may want to edit your title to reflect the EE dx.

[RoadWorkAhead]

My experience was that elemental diet = feeding tube, but at your child's age, that feeding tube could be NG. I do know some children will take it orally but its not common that they drink enough and sometimes the flavorings/sweetners cause further issues. That said, DD will now drink Elecare Vanilla by mouth almost 2 years after getting her tube. Good luck!

[Satori]

Its really going to depend on which formula your child is on. My dd LOVED the EO28 and was on that for a few years then we switched to the vanilla Elecare when she finally got tired of the EO28. Her allergies allowed us to mix in some chocolate (thinking it was just dutch cocoa & sugar, its been a few years) but Neocate also makes flavor packets you can try although we found all of them pretty nasty but yes, if your child will not take any of the formulas (we tried them all before trying the EO28 and later Vanilla Elecare) then yes you will have to get a tube in place. Healing will not take place as long as the child is eating intact proteins.

Have you joined the EE yahoogroup?
http://health.groups.yahoo.com/group/eosinophilgastro/

[JSerene]

Thank you for all the good info. I had not yet heard the singulair recommendation, but I know more meds are on the way. The doc wants to do one thing at a time to start. We still need to see allergy, immunology, and nutritian. We're fortunate in that all these specialities are in the same medical center and so far they have been very, very good. We have seen a dozen doctors in her 4 years and they have all missed this. She's been sick since she was a baby, and it pains me to know she's been in chronic pain her whole life (it explains a lot).

We have a scratch test coming up, though the one last year did not yield results. Her RAST was negative, but I don't consider that at all accurate. Fortunately, these docs believe me that she has allergies and are committed to helping us resolve this.

Thanks for the yahoo group info and the different formulas. This has been a very long road for us...I appreciate the info.

[Shellie]

My 4yo does a semi-elemental formula, usually partially but at times complete, without a feeding tube. She did have an NG for about 10 months but we were able to stop using it. She understands that she has to have the formula or get another feeding tube (next time it'd be g-tube). She does fine with it. Sometimes it's a struggle but it's our struggle--it's part of who she is and we all deal with it together. BTW, the newest Peptamen elemental (forget the variety) isn't bad. Not much worse than Pediasure. We use Vital Jr. but with EE I assume you need a full elemental. It's funny, my 4yo has Crohn's Colitis...my 3yo is perfectly healthy and he loves the Vital Jr. and I have to buy extra for him!

[Satori]

Originally Posted by Shellie

My 4yo does a semi-elemental formula, usually partially but at times complete, without a feeding tube. She did have an NG for about 10 months but we were able to stop using it. She understands that she has to have the formula or get another feeding tube (next time it'd be g-tube). She does fine with it. Sometimes it's a struggle but it's our struggle--it's part of who she is and we all deal with it together. BTW, the newest Peptamen elemental (forget the variety) isn't bad. Not much worse than Pediasure. We use Vital Jr. but with EE I assume you need a full elemental. It's funny, my 4yo has Crohn's Colitis...my 3yo is perfectly healthy and he loves the Vital Jr. and I have to buy extra for him!

Are you sure the people who tried it have a sense of taste? Its really really bitter from what I understand. I know we tried the Peptamin Jr and OMG, it tasted like motor oil and just an FYI for the OP, none of the Peptamin products are safe for anyone with a true milk allergy. dd had a severe reaction and I had to go round and round with the GI and finally get a letter from Nestle that it really is not safe for people with true milk allergies. I think we have tried every pediatric formula on the market at some point or another over the past 8 years and there all pretty gross but the Elecare Vanilla seems to be the least vile and its pretty easily flavored but the EO28 seems to really appeal to little ones just because it comes in a juice box.

To the OP, before you have to battle with your insurance company make sure you get samples to last at least 2 weeks from your GI to make sure your child really tolerates any formula and it can be difficult to get insurance to cover the formula but WIC covers many of the elemental formulas and if you can't get it from either you can often get it for about 1/4th of the price on ebay from parents who no longer need it and want to recoop there costs.

[Shellie]

Originally Posted by Satori

Are you sure the people who tried it have a sense of taste? Its really really bitter from what I understand. I know we tried the Peptamin Jr and OMG, it tasted like motor oil and just an FYI for the

Yes, LOL! The Vital Jr. is not milk-free through. It does taste similar to regular Pediasure. One of my kids likes Peptamen PreBio better, one likes Vital Je. better. We think it's the prebiotics in the Vital Jr. that helps her Crohn's. Of course these are HEAVILY flavored and chock full of corn syrup and sugar...the unflavored elementals, I cannot vouch for.

[anj_rn]

Definitely talk to the nutritionist. Some of the elementals are meant only for tube feeds and are enough to choke a goat. Usually they can provide you with some samples to try at home. I would suggest trying them first yourself, and then offering the best tasting ones to your child. That being said, I personally would avoid the NG tube. It frequently leads to oral aversions, and either is out where veryone can see it, or has to be placed regularly (which can feel like punishment).

Having a g-tube surgically placed is not a picnic, but it is not horrific either. It is also a guaranteed route for nutrition if you need it.

I truly hope everything can be taken orally.

[USAmma]

My dd has EE and has had a tube since she was 3 months old. That formula tastes *terrible*. I have tried it myself a few times and it's truly not palatable. However I have known local EE kids who will drink it. THe younger ones just get used to it because it's introduced when they are very young. There is a baby in my local support group who is big and chunky and guzzles the formula. Another child was 4 when I lost contact and was still on bottles almost 100% but that's what worked for him.

And then there are some teens/preteens who simply don't want a tube so they force themselves. to drink it. I have tried the flavored ones and they are tolerable if the child has the awareness that they need to drink it to grow. Otherwise it's hard. I have heard of people adding Crystal Light to it, and they also sell flavor packets (Neocate brand).

Contact APFED.org and see if they have a local support group so you can meet other parents and get ideas.

I really like having my dd's tube. It was a lifesaver. It's very easy to manage, I've never had any problems with it, and she's above average height and always been above 50% weigh after having the tube placed. She's now 6 and has not used the tube for many months. We have found a diet that we think is safe for her but it's taken years of food trials and biopies. So maybe she'll get her tube out soon, but if not it's okay. The next scope will be the moment of truth.

You absolutely need to find a GI who you feel comfortable with, and who will support your need to ask questions and possibly try different things before deciding what will work best for your child and for you. I have been through three GI's and 2 peds. I fired two nutritionists who had no clue about EE. One told me that dairy was okay! Don't feel afraid to fire a doctor and move on if you need to.

Also be careful about homeopathics because they can be allergic to those things. It stinks, but that's the way it is.