Are you aware of an intestinal disorder associated with FA? Please advise.

Posted on: Sat, 02/24/2007 - 8:57am
LDR's picture
LDR
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My 6 yr old is PA (since 18 months). Always been a good eater, but for the last 6 months, has had changes in her eating habits (significantly reduced) and constantly complains of abdominal pain (central). At first I thought it was her way of avoiding bedtime, but began to happen during the day and she even refused nut free chocolate on a few occasions (very out of character). Took her to pediatrician in August, ran blood tests and everything ok. Followed up with GI doc a few months later since symptoms continued. She said it may be constipation--gave daily meds and said it may take a few weeks. It's been a few weeks and doesn't seem to be any real change.

I'm told there is some condition that happens to some kids with FA, I can't remember what its called, but it has something to do with increased sensitivity to certain foods affecting the intestines or esophagus...can't remember exactly. I put it in the back of my mind because I was told that the only way to diagnose this would be with an invasive procedure, and we should try to rule everything else out first.

Any thoughts?

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Posted on: Sat, 02/24/2007 - 9:10am
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Are you referring to eosinophilic disorders?
Cathy

Posted on: Sat, 02/24/2007 - 9:16am
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LDR
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Yes, I just read down further on the list and found it--that must be it. The literature I found says this is very rare.

Posted on: Sat, 02/24/2007 - 10:35am
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We recently had my ds tested for these disorders through an endoscopy. Yes, it was minimally invasive, but it was much worse on me than ds, who's 4. He was sedated for the procedure and had no idea what was going on.
If you haven't already, you may want to check out [url="http://www.kidswithfoodallergies.org,"]www.kidswithfoodallergies.org,[/url] there's a ton of information there which may be helpful.
Best of luck, and hugs -- it's hard to see our kids in pain and not know why. Meg

Posted on: Sat, 02/24/2007 - 10:39am
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My 3yr old has it, and sees the allergist and GI doc(they work together). But the doc's are still really learning about this condition(Eosinophilic Esophogitis) so if they don't seem too knowlegable, that is why. Reflux also causes the same type of pain(my son has both)....but they can run some tests, an Upper GI or an Endoscopy to find out for sure. They do like to wait until age 2 though(for the Endoscopies)....have you tried some Prevacid or even Zantac to see if the pain goes away. My sons reflux would hurt so bad he would stop eating(reflux doesn't mean just spitting up, it's often chest or tummy pain only). Maybe do a seach or GERD and EE and see what you think yourself. But I would ask the GI doc if they think you are dealing with either one of these. Good luck!!
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Chanda(mother of 4)
Sidney-8 (beef and chocolate, grasses, molds, weeds, guinea pig & asthma)
Jake-6 (peanut, all tree nuts, eggs, trees, grasses, weeds, molds, cats, dogs, guinea pig & eczema & asthma)
Carson-3 1/2 (milk, soy, egg, beef and pork, cats, dog, guinea pig)
Savannah-1 (milk and egg)

Posted on: Sat, 02/24/2007 - 11:32pm
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LDR, this sounds all too familiar to me! 3yo DD was diagnosed with MFA's around Oct '06 and has complained about tummy pain from about age 2. Last summer, DH and I realized she was not making this up because she would actually go and lay on the couch for up to a 1/2 hour or so while crazy siblings ran circles around her. She is not constipated, she goes anywhere from 3 to 8 times a day. We see the allergist again at the end of March, in the mean time, we are trying elimination diets to see if we can find the culprit. No luck yet. Next step is GI doc. She also has some behavioral problems that we think may be related. Also still wakes in screaming fits during the night.
Hope you can find the answers you need. Hang in there.
Kara

Posted on: Sat, 02/24/2007 - 11:57pm
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Joined: 11/04/2005 - 09:00

Another possibility to look into with stomach pain is celiac disease.

Posted on: Sun, 02/25/2007 - 12:16am
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Kara and LDR...a suggestion, look into further food allery testing if you can. We saw a Pediatric GI(would recommend) and they did do the Endoscopy first, took biopsies, confirmed EE and then sent us back to the allergist. We found(in addition to milk, eggs and soy) that he was positive to beef and pork. We ate alot of bacon, sausage, hot dogs, hanburgers....so finding the meat issues made sense....and I would have never made the connection on my own. I think meat allergies are rare.
But they put Carson on Flovent(which is an asthma medication, but helps this condition by giving isolated amounts of steriod right into the esophogus when swalloed, not inhaled). anyways, he did a 6 week round of Flovent, we re-Endoscopied him and the EE levels and swelling went down dramatically. Also cutting the additional food allergies, it's helped alot, just not completly. He has random tummy pain, Kara, like your daughter he would get up during meals and ask to lay on the couch. When he woke up off anf on all day, up until bed time and even during the middle of the night, there would be crying about his tummy hurting. Most people think they are just acting out, but I know my child, he was indeed in pain.
Anyways, I tried to read alot myself, I search Pediatric Eosinophilic Esophogitis. We'll be seeing a new specialist at Chidlren's, he just came to the hospital last month and has been given our case. I'm excited to see what he knows, our doc's at Chidlren's have been great so far, but they also said this guy will help them even further. I did want to share, they did highly recomend contiuing the Zantac and Prevacid, it does help with the pain in the esophogus as well....just wanted to share.
Just curious, is thier pain down in their belly more? My sons seemed to be the worse right in the sternum(sp? where the rib cage meets, that little node-bone)...but also into the stomach and even intestine too. He is NEVER constipated either.
Good luck, HUGS
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Chanda(mother of 4)
Sidney-8 (beef and chocolate, grasses, molds, weeds, guinea pig & asthma)
Jake-6 (peanut, all tree nuts, eggs, trees, grasses, weeds, molds, cats, dogs, guinea pig & eczema & asthma)
Carson-3 1/2 (milk, soy, egg, beef and pork, cats, dog, guinea pig and EE)
Savannah-1 (milk and egg)

Posted on: Sun, 02/25/2007 - 1:40am
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and let me add, it is important to rule out Ceiliac Disease, my son had a biopsy and it was negative(as well as allergy testing to wheat, also negative)....good point LisaM!!!
------------------
Chanda(mother of 4)
Sidney-8 (beef and chocolate, grasses, molds, weeds, guinea pig & asthma)
Jake-6 (peanut, all tree nuts, eggs, trees, grasses, weeds, molds, cats, dogs, guinea pig & eczema & asthma)
Carson-3 1/2 (milk, soy, egg, beef and pork, cats, dog, guinea pig and EE)
Savannah-1 (milk and egg)

Posted on: Sun, 02/25/2007 - 4:15am
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Thank Chanda! Most of the time her pain is right in her belly, every once in a great while she'll point mid chest. Not very often though. Also if you put your ear to her belly you can hear popping. Fast, quick popping. You can even feel it with your hand. It is the strangest thing. I've never felt or heard this on anyone else.
A couple of days ago she actually told DH that her tummy didn't hurt. She said it twice one morning. We felt so bad for her. I think it really bothers her so much that when it does feel ok, she wants to tell us.
Also, as far as more allergy testing goes, we already have such a list of allergies, I'd be scared to find out others!! But really, we've been keeping a food diary and the only other common denominator that I can see might be wheat. Her Immunocap number for that was .45 UKL I think. Whatever it was, they say it is very very low, and she tested neg. on SPT.
Her allergist will send her to GI do end of March if we haven't had luck with this new elimination diet. No luck yet, but it's only been 1 1/2 weeks. Deep in my heart I thought it might be Celiac, but I had never heard of EE. I guess we will have to wait and see. In the meantime, we just keep on praying that things will improve and that she won't be in discomfort all the time.....
Kara

Posted on: Sun, 02/25/2007 - 4:42am
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Joined: 05/25/2006 - 09:00

What about dairy or wheat intolerance as opposed to allergy? Also, EE may be rare but I think it's getting diagnosed more and more. I know 3 families dealing with EE and only 1 I met bc of PA.
Luvmyboys

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