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Nitara had a scope/biopsy today to check her EE. Last scope was in December and she had major inflammation and swelling, and the biopsy came back showing over 100 eos per high power field (20 is enough to dx EE). Today the doctor said her esophagus looks <b>normal</b>! No signs of inflammation. We won't know for sure until the biopsy results are back to see if she is clear of eos, but she is obviously showing really great progress in treating this the way we are. We took away all food for a month, put her on elemental formula, then added back 3 foods that we thought were safe. If the scope is clean or close to clean she can keep those 3 foods and we can add 3 more. Nitara did reflux stomach fluids during the scope, which shows that her GERD is probably not related to EE but a separate issue. We were hoping that if the EE went away the GERD would finally go away, too, but she just has a weak sphincter.
 

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<img alt="" class="inlineimg" src="/img/vbsmilies/smilies/jumpers.gif" style="border:0px solid;" title="jumpers">: <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/partytime.gif" style="border:0px solid;" title="partytime"><img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/partytime.gif" style="border:0px solid;" title="partytime"> Yeh! hurray for nitara!!! <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/partytime.gif" style="border:0px solid;" title="partytime"><img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/partytime.gif" style="border:0px solid;" title="partytime"><br>
So what foods are you doing now and what are you going to add?
 

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<div>Originally Posted by <strong>MotherWhimsey</strong> <a href="/community/forum/post/7929470"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;"><img alt="" class="inlineimg" src="/img/vbsmilies/smilies/jumpers.gif" style="border:0px solid;" title="jumpers">: <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/partytime.gif" style="border:0px solid;" title="partytime"><img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/partytime.gif" style="border:0px solid;" title="partytime"> Yeh! hurray for nitara!!! <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/partytime.gif" style="border:0px solid;" title="partytime"><img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/partytime.gif" style="border:0px solid;" title="partytime"><br>
So what foods are you doing now and what are you going to add?</div>
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She is currently on white potatoes, carrots, and broccoli. I am almost afraid to plan ahead for what's next with foods because her scope has to be clean or almost clean. But if it is, Nitara really misses pasta and cereal. Her allergy skin test came back negative for wheat so in theory we can try it. I want to give her something yummy and sweet but not sure what that will be yet. Maybe sweet potatoes. Not sure we are ready to try fruits yet. I need to ask the allergist first. Each of these foods will be introduced 2 weeks apart from each other at least to watch for reactions. That's how we suspected rice and a skin test confirmed it. I would love to trial ketchup but not sure if it has too many ingredients, even the organic kind.
 

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That's great news!!!!!!! Keeping my fingers crossed that results come back good!!!!
 

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my son is on neocate. he tested negative for all allergies, however he is intolerant to milk/soy/wheat/gluten. he is MFPI. i had to figure that out on my own after no help from doctors. just wanted to share with you that those allergy tests arent always the answer.<br>
if you want here is a great article on food intolerances.<br><a href="http://http//home.vicnet.net.au/~disa/Food%20intol-alergic%20baby.html" target="_blank">http://home.vicnet.net.au/~disa/Food%20intol-alergic%20baby.html</a><br><br>
also, can you explain what you mean by the gerd not being related to the EE? i thought EE is always a result of acid reflux?
 

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Congratulations!
 

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<div>Originally Posted by <strong>nataliachick7</strong> <a href="/community/forum/post/7929968"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">my son is on neocate. he tested negative for all allergies, however he is intolerant to milk/soy/wheat/gluten. he is MFPI. i had to figure that out on my own after no help from doctors. just wanted to share with you that those allergy tests arent always the answer.<br>
if you want here is a great article on food intolerances.<br><a href="http://http//home.vicnet.net.au/~disa/Food%20intol-alergic%20baby.html" target="_blank">http://home.vicnet.net.au/~disa/Food%20intol-alergic%20baby.html</a><br><br>
also, can you explain what you mean by the gerd not being related to the EE? i thought EE is always a result of acid reflux?</div>
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It's a complicated answer-- we have been doing this for 3 years with her feeding issues and a feeding tube, and a dx of EE in December. EE is an IgG allergy, not IgE. We use both IgE and IgG skin tests. The IgG is a skin patch test over 48 hours and it actually has picked up a lot of reactions that didn't show on the quick skin prick test. I don't base anything 100% on the tests, but I do use them as a guide on what foods to introduce next and which to totally avoid for the forseeable future. We had her totally on Neocate Jr or One+ (basically same formula with slight differences) for a month with no foods, then slowly introduced the three foods back in one at a time watching for reaction.<br><br>
The GI and allergist both suggested rice as a first food before we patch tested her for that. We had not made the appt for the test at that time but figured rice was safe. Wrong! She showed a reaction after 5 days, because IgG is a slower reaction. Because she was not on other foods we knew it was rice. Took it away and she got bettter, and did a patch test that confirmed the rice allergy. So now we test her first and then if it's negative we try it and see.<br><br>
GERD and EE can be totally separate issues. EE can be allergic or non-allergic. Most cases of EE are allergic-- either caused by foods or caused by pollens and other things in the environment that are swallowed. If foods do not clear up the EE they will usually treat the kids with swallowed steriods like Flovent or Flonase and most have good results. If the person has less than 20 eosinophils per high powered field, then they assume that the eos is from GERD irritation. There have been a lot of studies recently on this. Most of the time a GERD patient's eos count will go away with treatment with acid reducers. If a person had an eos count of over 20 it is because of allergies or unknown causes (usuallly allergies). Their numbers do not improve with treatment with acid reflux meds.<br><br>
EE can cause reflux because of the irritation in the system. Reflux or GERD can also just be causes by weak anatomy, hernia, nerological issues, or other things. Nitara has had reflux from day one. She had a biopsy at 4 mos, after she already had a feeding tube due to severe reflux, and she had no eos at that time. I wonder if she was showing symptoms though. There is a lot to learn about EE still-- even the GI told me that they don't know a lot about the disease yet. At 8 mos old she had a few eos but not enough to count as EE. They assumed it was from reflux. At 35 mos old she had over 100 eos and obvious other symptoms. They went away and she had dramatic improvement once we took all foods away and put her on elemental formula.<br><br><a href="http://www.apfed.org" target="_blank">www.apfed.org</a> has some more info on EE.
 

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Hooray for the clean scope!! Sweet potatoes and pasta sound like good things to try next. They do make rice pasta, in case you're nervous. Whole Foods sells it. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/smile.gif" style="border:0px solid;" title="smile">
 

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Discussion Starter #10
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<div>Originally Posted by <strong>Finch</strong> <a href="/community/forum/post/7930407"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">Hooray for the clean scope!! Sweet potatoes and pasta sound like good things to try next. They do make rice pasta, in case you're nervous. Whole Foods sells it. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/smile.gif" style="border:0px solid;" title="smile"></div>
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Thanks for reading. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/smile.gif" style="border:0px solid;" title="smile"><br><br>
Believe it or not she's allergic to rice. The same test showed negative for wheat, so we will be doing wheat pasta and watching very closely for reactions.
 

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all clear, yay!
 

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That's so wonderful! What an amazing turnaround. I bet you're doing backflips! Congrats, Nitara! <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/orngbiggrin.gif" style="border:0px solid;" title="orange big grin">
 

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<div style="margin:20px;margin-top:5px;">
<div class="smallfont" style="margin-bottom:2px;">Quote:</div>
<table border="0" cellpadding="6" cellspacing="0" width="99%"><tr><td class="alt2" style="border:1px inset;">
<div>Originally Posted by <strong>USAmma</strong> <a href="/community/forum/post/7930369"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">It's a complicated answer-- we have been doing this for 3 years with her feeding issues and a feeding tube, and a dx of EE in December. EE is an IgG allergy, not IgE. We use both IgE and IgG skin tests. The IgG is a skin patch test over 48 hours and it actually has picked up a lot of reactions that didn't show on the quick skin prick test. I don't base anything 100% on the tests, but I do use them as a guide on what foods to introduce next and which to totally avoid for the forseeable future. We had her totally on Neocate Jr or One+ (basically same formula with slight differences) for a month with no foods, then slowly introduced the three foods back in one at a time watching for reaction.<br><br>
The GI and allergist both suggested rice as a first food before we patch tested her for that. We had not made the appt for the test at that time but figured rice was safe. Wrong! She showed a reaction after 5 days, because IgG is a slower reaction. Because she was not on other foods we knew it was rice. Took it away and she got bettter, and did a patch test that confirmed the rice allergy. So now we test her first and then if it's negative we try it and see.<br><br>
GERD and EE can be totally separate issues. EE can be allergic or non-allergic. Most cases of EE are allergic-- either caused by foods or caused by pollens and other things in the environment that are swallowed. If foods do not clear up the EE they will usually treat the kids with swallowed steriods like Flovent or Flonase and most have good results. If the person has less than 20 eosinophils per high powered field, then they assume that the eos is from GERD irritation. There have been a lot of studies recently on this. Most of the time a GERD patient's eos count will go away with treatment with acid reducers. If a person had an eos count of over 20 it is because of allergies or unknown causes (usuallly allergies). Their numbers do not improve with treatment with acid reflux meds.<br><br>
EE can cause reflux because of the irritation in the system. Reflux or GERD can also just be causes by weak anatomy, hernia, nerological issues, or other things. Nitara has had reflux from day one. She had a biopsy at 4 mos, after she already had a feeding tube due to severe reflux, and she had no eos at that time. I wonder if she was showing symptoms though. There is a lot to learn about EE still-- even the GI told me that they don't know a lot about the disease yet. At 8 mos old she had a few eos but not enough to count as EE. They assumed it was from reflux. At 35 mos old she had over 100 eos and obvious other symptoms. They went away and she had dramatic improvement once we took all foods away and put her on elemental formula.<br><br><a href="http://www.apfed.org" target="_blank">www.apfed.org</a> has some more info on EE.</div>
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that does make sense now that i think about. initially when my son was on a high dose of PPI he was better for a little while, but then soon after he was still in severe pain from reflux. the doctor was NO help. he was on alimentum at the time and she said thats all that could be done. i said no way...i found out about neocate and once i made the switch his reflux pain subsided COMPLETELY. so i guess there was damage being done in his esophogus from the milk proteins in the alimentum. he still requires his prevacid, and that in conjuction with the neocate is making him a happy pain free baby.<br>
anyway, im glad your daughter is doing better now. i would be careful with the wheat...we just recently discovered our son is wheat/gluten intolerant <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/greensad.gif" style="border:0px solid;" title="greensad">
 

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Discussion Starter #16
<div style="margin:20px;margin-top:5px;">
<div class="smallfont" style="margin-bottom:2px;">Quote:</div>
<table border="0" cellpadding="6" cellspacing="0" width="99%"><tr><td class="alt2" style="border:1px inset;">
<div>Originally Posted by <strong>nataliachick7</strong> <a href="/community/forum/post/7940955"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">that does make sense now that i think about. initially when my son was on a high dose of PPI he was better for a little while, but then soon after he was still in severe pain from reflux. the doctor was NO help. he was on alimentum at the time and she said thats all that could be done. i said no way...i found out about neocate and once i made the switch his reflux pain subsided COMPLETELY. so i guess there was damage being done in his esophogus from the milk proteins in the alimentum. he still requires his prevacid, and that in conjuction with the neocate is making him a happy pain free baby.<br>
anyway, im glad your daughter is doing better now. i would be careful with the wheat...we just recently discovered our son is wheat/gluten intolerant <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/greensad.gif" style="border:0px solid;" title="greensad"></div>
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I'm so sorry to hear stories like yours so many times. It's just awful how medical professionals don't take the concerns of parents seriously. I'm glad he's feeling better now. I hope that as he gets older you are able to find things for him to eat.<br><br>
Nitara has been tested for celiac's by blood and biopsy and she doesn't have it. The patch test showed no reaction at all (done at the same time as rice). So hopefully she can really eat it. At least we know what symptoms to watch for and this is being done in such a controlled manner that we will know what the culprit is if she reacts. It's a lot tougher with parents whose kids have a lot in their diets.<br><br>
Best of luck to you!
 

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Nitara's biopsy results are in!!!<br><br>
Wow I love the fast service with the biopsies. Her GI called just now and Nitara has almost a clean scope!! She has 2-3 eos, down from over 100! The GI said she thinks those small ones are from acid reflux, and we had just increased her Prevacid about a week before the scope from 15 to 30 mg. Hopefully that will help. She refluxed during the scope both times so we know she has GERD in addition to EE, not because of it.<br><br>
Nitara gets to keep carrots, broccoli, and potatoes! Also can keep canola, safflower, and sunflower oils that we were using to fry her potatoes or that were in chips we bought. Next is to introduce wheat. She said be very cautious about it and watch for symptoms because it's so allergenic. But this is the only way we will know. She has never tested + for it on skin tests. She said not introduce anything but wheat for a month at least. Maybe two other foods but that's it until the next biopsy. It will be around August or September.
 

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Yay that is so so exciting!<br><br>
We have not been through what you have. But both of my boys were scoped for EOS which they didn't have. They had something called Lymphonodular hyperplasia. They were off all foods and on Neocate and Elecare only. My point is I know how exciting it is when you can add in a couple foods and when you can keep those foods!!! Yay! I am so happy for you both!
 

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<div>Originally Posted by <strong>logan&jordansmommy</strong> <a href="/community/forum/post/7959056"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">Yay that is so so exciting!<br><br>
We have not been through what you have. But both of my boys were scoped for EOS which they didn't have. They had something called Lymphonodular hyperplasia. They were off all foods and on Neocate and Elecare only. My point is I know how exciting it is when you can add in a couple foods and when you can keep those foods!!! Yay! I am so happy for you both!</div>
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Wow I just had to look that up and it sounds very similar to EE in some ways. How are you treating it? How are your boys now?
 
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