InfantReflux.Org Forums: MFPI- what to do next? I'm at my wits end!!

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rhesp1212
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Topic: MFPI- what to do next? I'm at my wits end!!
Posted: 16 September 2009 at 5:14pm

I'm soooooo frustrated at this point! Here's a little background first....My DS is almost 13 months old and we have battled reflux and DGE since birth (he was a preemie). We have over time discovered that certain foods trigger the reflux (dairy and soy being the worst). When we started him on solids, everything got worse.....reflux, vomiting, rash breaking out on his face, horrible sleep, etc. So, after being on zantac and erythromycin we started a total elimination diet. We've been on TED for about 8 weeks now (I've lost track). We recently saw a new GI specialist, whom I LOVED...diagnosed DS with MFPI finally. The new GI had us stop the erythromycin and explained that the MFPI is probably causing both the reflux and the DGE. DS did fine for a week and then all of a sudden started spitting up and refluxing again!! UGH!! I called today and let them know and they said as long as he's happy and gaining weight they don't want to put him back on it. OK, I understand that.

He's currently only eating organic turkey, lamb (rarely), potatoes of any kind, pears, green beans, zucchini and yellow squash. Everything else that we've tried adding back in has FAILED!!

so, here's my question.......was the erythro masking the symptoms before and he's really sensative to one of the things that we've been feeding him? Should we restart the erythro or try stopping the meats in his diet?? I'm still BF, but would desperately like to wean him at this point as I'm fed up with this diet!! Dr. gave us samples of neocate, but we havcen't started it yet. If he's still vomiting, how are we supposed to know if he's tolerating the neocate or not??!?!

I just don't know what to do anymore. I'm so tired of dealing with this and feel like I'm beating my head against a wall trying to figure this thing out!!

Any advice or been there, done that's would be so much appreciated!!

Thanks,

Valerie

Valerie
DS- 15 months old
BF on TED (Diagnosed MFPI/FPIES and only tolerates 7 foods)
Zantac 2 ml twice a day

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hellbennt
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Posted: 16 September 2009 at 5:21pm

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Erin’s sticky: http://www.infantreflux.org/forum/forum_posts.asp?TID=12948&PID=105126#105126

~laura~
Jonah 7/03:GERDfree@12mos! Silent Reflux@birth(apnea episodes/NICU);Past Sandifer Symptoms, breastfed->15mos
Ari 7/06 REFLUX FREE, so miracles do happen!

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erinntx
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Posted: 16 September 2009 at 9:29pm

Hi!

I'm Erin (the sticky above is our story)...

Your ds sounds a lot like my Evan.

Okay, so if you are still nursing him are you currently on the same diet as him? Because if you aren't (on the same diet) then you can't really do an accurate food trial at this point since there are SO many factors (your diet, his diet, new foods, med weaning, etc).

Evan was only eating 5 things @ 12 mths old (chicken, apples, potatoes, squash & carrots). I weaned him @ around 12.5 mths old to rice milk (well, we trialed rice first). At that point it became MUCH easier to add new foods in (or at least trial them).

The things I look at (& log) during a trial are:
*nap lengths
*night sleep (increased night wakings, etc)
*stool pattern (ie: color, consistency, mucous, etc)
*skin reactions

I give it a full 4-5 days of offering the food 3x/day (when possible) before I "call" it a success. If he starts reacting (his reactions are usually delayed 2-3 days) then I stop immediately.

I'm not super familiar w/ the med you're referring to (the erythro) but I will say that Evan is still currently on Prevacid. He was okay not on any reflux meds while I was bf'ing (& on VERY strict, limited TED)... but when he started solids @ 8 mths old I needed to put him back on Prevacid. While his GI tract wasn't reacting (ie: intestinal pain), his reflux pain increased. I decided @ that point to leave him on Prevacid if it meant he could eat solids (vs. not eat solids). He's still on the Prevacid... I have plans to wean him off soon but for now we're content.

Okay, so all that to say... here's what I would do:

I would try to wean him to rice milk (unless your dr feels strongly about Neocate). We actually see a dietician for Evan & he (as well as ped GI + general ped) all feel that the rice milk is fine. If in a couple months they are concerned then you can reassess. They don't feel the Neocate is necessary to wean to (when the db has been bf'ing & not already on Neocate) unless there is current weight issues. (Evan actually is now getting some calorie supplement in his rice milk but all his specialists still say that Neocate isn't necessary & we'll continue to reassess). I don't know your exact situation so Neocate may be a better option for your ds...

I would start digestive enzymes w/ your ds. The brand we use is in that sticky (CompleteGest). I would do 1/2 capsule before each meal.

I would make sure you have a baseline (ie: regulated diapers, consistent sleep, no skin reactions, no vomitting) & then map out a plan & try adding in food. (I can give you the order we tried food if you want).

Hope that helps & let me know if you have any other questions... I hope someone else chimes in re: DGE & erythro.

Hang in there!

Erin
Brodie-4/13/06no reflux; nut allergy; bstfd 20mth
Evan-5/20/08 MFPI (limited diet);Rice Milk (former TED,bstfd 13mth);30mg Zegerid
Tate-1/8/10 MFPI; Rice Milk(former TED,bstfd 14mth);30mg Zege

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rhesp1212
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Posted: 16 September 2009 at 9:49pm

hi Erin,

Yes, I'm on the TED with my DS and I'm fed up with it!! He can't tolerate rice or rice milk, so that's not an option for him unfortunately. He has a VERY long list of food that we have trialed, all of which has failed. The GI specialist felt that he would probably react to any type of milk product because he seems to be so sensative to proteins in everything (said he was the worst case he's seen in 10 years). He wanted us to try the Neocate because although his weight is okay, he stopped growing in height and went from being in the 50% to the 5-10% at his one year check up. I think it's his way of making sure he's getting the vitamins and nutrients he needs.

When DS is reacting, he has an increase in reflux, sleeps AWFUL and often breaks out in a rash around his mouth that lasts for up to 2 weeks (as long as the offending protein is in his gut). Like your DS, all of his reactions are delayed anywhere from 12-72 hours if he gets it directly, or up to a week delayed if he's only getting it through BM.

Regarding the DGE and erythro- the erythro acts as a motility drug (similar to Reglan without the side effects). My confusion is that the GI spec. told me that his reflux and DGE are probably a side effect of the MFPI. So, he pulled him off the erythro. He's been off of it for about a week and he's started spitting up earlier this week again. so, I don't know if it's just from stopping the meds or if he's sensative to something we've been feeding him and the erythro was just masking it since it pushes everything through!

I'm trying to get in to see a dietician, but everyone is being a pain in the butt about it! i'm trialing the Neocate now despite the spitup (which might back fire on me). I figured that way things will be more controlled and when I'm able to wean him I'll only have to worry about what he's eating.

The other problem I'm finding is that he won't tolerate any oils other than olive oil. If eat anything that has canola, safflower, sunflower or corn oil in them he starts throwing up!! Oils don't have proteins in them, so I don't understand this at all!! So, I can't even do any kind of potatoe chip unless I take the time to make them myself, which is a pain in the butt!!

I'm just completely frustrated at this point!!

Valerie

Edited by rhesp1212 - 16 September 2009 at 9:50pm

Valerie
DS- 15 months old
BF on TED (Diagnosed MFPI/FPIES and only tolerates 7 foods)
Zantac 2 ml twice a day

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erinntx
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Posted: 16 September 2009 at 10:08pm

Valerie,

Oh, I see about the rice (Evan didn't tolerate rice as late as 10 mths old... when we trialed it @ 12mths old I wasn't very optimistic but he DID tolerate it then). Evan has a super long list of failed trials too unfortunately so I can certainly relate. Evan also has height issues (he's less than 3rd %ile for height & weight) so I can relate to that too unfortunately.

Okay, so can he tolerate corn products?! Because Neocate IS corn-based. So, if he can't tolerate corn (elsewhere) then this could be causing an increase in reflux &/or vomiting.

Re: the meds... did you wean off the meds slowly? I have no clue if that matters w/ the erythro but I know it can matter w/ the Prevacid. If it's not that then I would guess he's reacting to something he's been eating & the erythro has been masking. This is my worry when we wean the Prevacid but I'm okay for it since that would also mean that that food would be affecting his growth :(.

We see a dietician @ the children's hospital. The ped GI referred us (& we DID need the script for the appt). Unfortunately our insurance doesn't pay for it so we're paying out of pocket...but we're appealing.

My mom bought Evan these chips that are oil free. They're not much nutrition-wise (ie: calories or fat) but they're something diff't & Evan loved them before he was able to tolerate regular Lays potato chips. I can't find the chips online but I will ask my mom if you want. I think she got them @ Costco. It IS odd that your ds has problems w/ the oils eventhough they don't contain proteins.

Again, I would start the enzymes b/c they will probably help w/ many things: the DGE, reflux & GI tract.

I totally get being 'over' the bf'ing on such a restricted diet! I was TOTALLY there!

Hang in there!

Erin
Brodie-4/13/06no reflux; nut allergy; bstfd 20mth
Evan-5/20/08 MFPI (limited diet);Rice Milk (former TED,bstfd 13mth);30mg Zegerid
Tate-1/8/10 MFPI; Rice Milk(former TED,bstfd 14mth);30mg Zege

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rhesp1212
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Posted: 17 September 2009 at 7:53am

Erin,

You have no idea how good it feels to talk to someone who knows exactly what I'm going through -well, actually you probably do know how I feel!! :)

No, he did not tolerate corn. I asked the dr. about it being in the neocate and he said since there are no intact proteins it shouldn't be a problem for him, but we'll just have to trial it like everything else. I just started the Neocate yesterday and only gave him a few sips of it. He started spitting up again before I started it. I'm not feeling very optimistic about it since he also seems to react to oils and the first three ingredients are corn syrup, coconut oil and canola oil! We'll see what happens.

Yea, the rice we discovered at 6 months when we started him on cereal. We stopped it and switched to oatmeal (which he is now having a problem with). We tried it again at about 10 months and had 3 nights of hell from it.

I mentioned the oils to the GI dr. and he said it's most likely a reaction to cross contamination. But, I don't know what it would be with other than maybe vegetable oil that contains soy. I just thought of something...I've been eating very large amounts of fried type foods in olive oil this week. I wonder if he's having a problem with the amount of oil I'm using. Hmmmm.....it's such a guessing game sometimes!

I want to see a dietician, but none of my dr's seem to think it's a priority right now and don't seem concerned about it. I have been concerned about his nutrition, since he's eating so few foods. I know he's fine as long as I'm BF, but what about when I wean him. He needs to be getting adequate nutrition to grow properly and for his development. I'm frustrated with this also as no one seems to think it's anything to worry about. Drives me crazy! I think I'm going to call my pedi today and ask them for a referral to a dietician outside of the children's hospital, because they keep giving me a run around and can't get us in for months at a time.

Thanks for the info about the enzymes and probiotics, I'm going to order some today. I've been wondering about that.

I just feel like I'm at a crossroads.....I'm at a point where I'm afraid to add things back in (literally afraid) because he'll probably have a reaction to it and it takes him so long to recover from a reaction. I'm tired of the emotional rollercoaster of being excited about a food and then having the wind taken out of my sails when it fails and we're stuck eating the same foods again for atleast 2 weeks while his gut heals again.

We are having an endoscopy and sygmoidoscopy done on oct. 8th. GI dr. wants us to feed him his worst offending foods for 4 days prior so they can run tests on the biopsies. It's going to be torture, but I'll be happy to eat something different for a change! Isn't that awful?

Valerie
DS- 15 months old
BF on TED (Diagnosed MFPI/FPIES and only tolerates 7 foods)
Zantac 2 ml twice a day

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valentine4mommy
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Posted: 17 September 2009 at 9:24am

Hi Valerie! Erin, obviously, has given lots of helpful info. I just wanted to offer another suggestion...maybe try Hemp milk?! We use this in addition to rice milk for my DD. It is very nutritional & doesn't have any known allergens. We use tempt Hemp milk by Living Harvest. They have a wide variety of flavors too. http://www.worldpantry.com/cgi-bin/ncommerce/ExecMacro/livingharvest/home.d2w/report

Also, we used erythro for a long time. We weaned her from it at about 13 months & TBH, didn't have any issues. We've been lucky in that regard. I'm not so sure I would think that the erythro would be masking the intolerance/MFPI. I know it pushes the food out faster, but I would think that it's still in the system and therefore able to be reacted to, JMO. I would think that there was an increase in spit up when you went off the med b/c it was needed to help empty the stomach. There are so many unknowns w/reflux, MSPI & everything else. It can be so frustrating. I'd consider going back on the e-mycin, try the hemp milk, do probiotics/enzymes. I, personally, wouldn't do the neocate. I know the Dr's like to say b/c it doesn't contain the corn protein that they won't react, but that's not always the case. Especially if your LO is reacting to oils that don't even contain the proteins, KWIM?

HTH!

~Amber
Ryan~2/14/06~ Egg Allergy
Averi~01/25/08~ Reflux/Med free @2yrs, Hemp Milk

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erinntx
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Posted: 17 September 2009 at 10:32am

Valerie,

Yes, it is nice to know that someone else has a baby with such a sensitive system. Though I would never want another person to go through this it's reassuring to know you're not alone.

I didn't realize that the oils were such high ingredients in the Neocate... I would guess then that if he's reacting it's probably that. I would though wait for other reactions (ie: skin &/or stool) to "call" it a failed trial - maybe not just go by the spitting up. Does that make sense?

Evan can't do oatmeal (or any gluten at all but oatmeal in isolation was a really bad trial). The rice milk does have safflower oil as the #3 ingredient so until you get the oil thing figured out you probably won't be able to accurately trial that either (fwiw, we trialed rice by itself 1st before jumping to rice milk b/c Evan had previously reacted to sunflower & safflower oils).

I just looked @ the Hemp Milk ingredients that Amber suggested & the unsweetened kinds don't contain any rice or oils... so perhaps that could work?! Btw, thanks Amber b/c I will look into that for Evan maybe in the future (for now I'm going to stick w/ the rice milk + Duocal calorie supplement).

I will say that our dietician says that the cross contamination in restaurants or fast food is a problem for Evan. He was eating a lot of Wendy's or Chick-fil-a french fries but he said that the amount of gluten on them (from being fried in same oil as breaded chicken) was enough to disrupt his system & 'kill' his celia (they are highly suspecting celiac for him) which then causes malabsorption & thus, stunts his growth. Anyway, I don't know if you've been preparing everything @ home or if you've been preparing everything separately but that's something to think about.

We didn't get the referral for the dietician until Evan's 15 mth ped GI & general ped appts. He actually was growing slowly, but at a steady rate until between 12-15 mths. This was when he a) weaned to rice milk, b) expanded diet from 5 things to about 20 things, c) we took a break from enzymes & probiotics & d) we did a wheat trial that damaged his system to increase the malabsorption. The dietician says that Evan eats enough caloires & a enough variety that he *should* be growing/gaining at a normal rate but obviously he's not.

I know the frustration & the fear... it really is so hard. Hang in there.

Evan had scopes @ 10 wks old & actually will probably be scoped sometime in the next 6-12 mths again. What are they doing biopsies for?! They don't want Evan eating any offenders when he gets scoped b/c they want to see if he's damaged w/o eating direct offenders (if that makes sense). That will be hell for you (& your little guy!)... and do you think the 4 days will be enough!?! Hmmm...

Oh, also - has he had any vaccines recently? This can certainly cause an increase in reflux &/or intestinal reactions (does everytime w/ Evan). So, that would explain the increase in reactions w/o pointing to any foods. I know he's almost 13 mths so I thought maybe he recently went in for shots.

Erin
Brodie-4/13/06no reflux; nut allergy; bstfd 20mth
Evan-5/20/08 MFPI (limited diet);Rice Milk (former TED,bstfd 13mth);30mg Zegerid
Tate-1/8/10 MFPI; Rice Milk(former TED,bstfd 14mth);30mg Zege

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rhesp1212
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Posted: 18 September 2009 at 7:54am

Thanks ladies for all the tips!! I posted a reply yesterday, but it seems to have disappeared!! :(

I will look into the hemp milk, I was also considering trying coconut milk since it's high in fats. The only problem is that it doesn't have much calcium in it at all, which I know he needs. Since he can't eat any type of dairy or soy products, this is going to be an issue for us. Do you give any type of calcium supplement??

I make all of his foods at home from scratch because he doesn't tolerate most preservatives either, so we pretty much never go out to eat....hence the isolation part of this that I hate so much!! The two times we went out, I ordered a plain baked potatoe with nothing on it....later found out that one of them had butter on the outside of it, which he of course reacted to! We have been wheat and gluten free as well at home, so definitely not cross contaminiation going on.

Regarding the scope-I say they are going to be biopsies, but I don't know that for sure. They want him to be reacting when they do it so they can see the inflammation, etc. and take skin samples to test for eosinophils and anything else they can. I know they won't be able to test for celiacs because he's been off wheat and gluten for so long. The dr. said 3-4 days before since he thinks they are allergic type reactions, but I might actually start a week before with me eating the offenders since they take longer to build up through my BM, and then 4 days before start feeding him directly. The only thing I'm afraid of is dairy.....he projectile vomits when he gets it through my BM. I have never given him any form of dairy directly, so I have no idea how he'll react to it.

His spitting up seems to be lessening a bit, but he's definitely still refluxing. We can hear him "urp" things up and swallow it back down quite frequently. I realized last night that I had eaten an Asian Pear a couple days in a row, and I'm wondering if that on top of getting over the oatmeal has triggered the reflux. HE's so weird, because he reacts to foods in the same family as those he can eat. He can eat zucchini and yellow squash, but has a horrible reaction to butternut squash. I can eat other pears, but if I eat those Asian Pears he starts vomiting again. Weird!

so far, he seems to be doing okay with the neocate, but he's only gotten 1/2-1 ounce the last two days. I thought I saw a couple of dots start popping up on his face, but I'm going to give it a couple more days of exposure to see if it gets worse or not. I've been giving it to him at meals, and the last two nights he started screaming in his high chair after he drinks it and has been really hyper after dinner (not like him). I'm going to have to watch this as it could be a behavioral change reaction from it?

He had shots a month ago at his one year appointment. The only side effect we saw was he developed a bumpy rash about 2 weeks after it on his chest, neck and face (maybe from the chicken pox vaccine?) It didn't seem to bother him so we didn't take him in to the dr. or anything, and it wasn't bad.

Valerie
DS- 15 months old
BF on TED (Diagnosed MFPI/FPIES and only tolerates 7 foods)
Zantac 2 ml twice a day

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valentine4mommy
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Posted: 18 September 2009 at 2:54pm

Hemp milk contains the same amount of calcium as whole milk. It also has a ton of essential fatty acids(omegas 3 & 6) that whole milk doesn't even have. Like I said, very nutritional. My DD gets 1 8oz glass of it a day and the rest rice milk and she's super healthy. My Ped was really impressed w/what the hemp milk offered.

As far as the Dr wanting you & him to eat the foods that bother him, I'd be cautious. Personally, I don't think that's a good idea. In a couple of months you could do Skin Prick allergy testing that, IMO, would give you the same info you would get from the scopes. Yes, they may actually see inflamation, but is that really necessary? I don't know, doesn't make sense to me. It would screw up all of your hard work w/TED, JMO. Wouldn't they also see inflammation due to refluxing and not on proper med dose? Is he on meds other than e-mycin? Hmmm...

~Amber
Ryan~2/14/06~ Egg Allergy
Averi~01/25/08~ Reflux/Med free @2yrs, Hemp Milk

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