I'll try not to babble on. Long story short, DS with NKA has had reflux type symptoms since he was a baby. He's been on and off reflux meds, he's had two endoscopies where celiac and EE were ruled out, he's had trouble maintaining weight and growing. I've been to 5 different GI docs with him, got different opinions on him being on reflux meds his whole life, and finally found, I think, his diagnosis of a stomach disorder called functional dyspepsia. It is managed through avoiding spicy, fatty, foods or drinks with caffeine, taking benefiber daily as part of his problem is constipation, and daily zyrtec to manage nausea symptoms. For about a year symptoms have been pretty well controlled, and he's maintaining his weight -- knock wood -- even getting a little bit of a belly.
He's also undergone allergy testing, including the deeper skin tests and everything's always come back negative (as recently as a year ago).
He's had two nausea attacks recently that have been brutal. The one which kept him home yesterday was sudden onset again, but it was also accompanied by tons of post nasal drip and tickly throat. The only thing I can think of with these two attacks that's a common thread for possible allergy is red dye, which he hasn't been tested for. However, at other times he eats/drinks things with red dye without a problem.
Anyone have experience with dye allergies? Can they test for it accurately? This kid has been a challenge health-wise since birth, and just when I think I have it all figured out -- whammo! Still having these attacks of nausea that literally stop him in his tracks and he spends a good part of the day crying. I used to think these attacks were some kind of stomach bug, but then he never had any other symptoms and ate his way right through them.
His symptoms definitely match his diagnosis, just wondering if there may be something else there as well. I will be circling back to his GI doc, just wanted to see if something jumps out at anyone. Thanks!
Sorry, this probably doesn't belong in Main...
I'm sorry to hear your little guy is suffering!
Since dye reactions aren't typically IgE mediated, dye sensitivity can be difficult to accurately diagnose. Patch testing might be your best bet.
Are his reactions immediate or delayed? Have you kept a diary of everything he ingested for several hours (or even a day) beforehand? What about different types of red dye? Maybe he only reacts to a certain one and that's why it seems he can tolerate some red things?
One other thing to consider would be ALCAT testing. I don't normally promote alternatives to true allergy testing, but it sounds as if you may need to head down that road since IgE testing is negative. Here's a recent post I made about our experience... Re: Introduce Yourself - We're Glad You Found Us! (http://foodallergysupport.olicentral.com/index.php/topic,7.msg23899.html#msg23899)
One other thought - perhaps it's a combo of the dye and another ingredient causing the reaction? When DD was a baby, she had terrible localized burn-like reactions to some diapers. We figured out it was the blue inside causing the problem, but not always. It ended up being only when the elastic in the diaper was running through the blue part (on Huggies it was around the leg openings and on Pampers it was across the back waistband). Turns out it's the combination of blue and spandex. Once she was older, blue tights/leggings/bike shorts, etc. would cause terrible hives. Now, at age 13, she seems to tolerate some blue/spandex, but occasionally will get some mild hives or a rash from it.
Has he had a gastric emptying study? I have a gastric emptying delay, and if I eat too much, or eat anything with too much fiber (which is bulky in the stomach) I get miserable.
TMI warning: I know that you said he was constipated - when he went before changing the diet, did his stools float? I had a lot of constipation and 'floaters' before I changed my diet for emptying delay and started taking an enzyme supplement. Floating stools are a sign of not digesting fat so well - so my doctor started me on a prescription digestive enzyme supplement - I take Creon. Creon is a form of an enzyme produced in the pancreas that digests fat - you take it with meals, and it helps me to keep things moving in my stomach. As long as I take the Creon with my meals and any larger snacks, I haven't had problems with constipation, and while I have to keep to a diet plan (smaller meals and snacks, not having a lot of beverages, and generally avoiding anything with really high fiber), things keep moving fine and it is pretty manageable.
I know that this may sound like a weird suggestion, since he's on fiber, and I avoid high fiber things. But I had a lot of constipation before starting the supplement, and I rarely have problems now, unless they are caused by other drugs I'm taking.
Has he been tested for parasites? Probably yes, but just wanted to be sure. Also, cystic fibrosis? That is pretty much standard in a kid with growth problems, but just wanted to be sure. If he has been to five GI docs, probably yes.
Have you tried a gluten free diet anyway? Just because you test neg for celiac doesn't mean your not gluten intolerant. FWIW. My cousin's DD had major stomach issues and going GF totally resolved it. If she has a slip, she is sick again.
Not-quite-random thought --- sometimes I'll get "stomach migraines" where I only get the nausea from the migraine and not the actual headache. It's still a migraine, in my brain/neurology but the sign is nausea. I can throw up, be sick in the bathroom, etc. but mostly it's waves of nausea I feel more in my head that make me want to hurl. Since he's young, not sure if there is a clarity about where he's feeling the nausea.
Poor guy, best wishes on a solution,
Adrienne
Thanks everyone! I'll bring your thoughts to the GI doc, see what he thinks. Catelyn, I just read an article about gluten sensitvity and I wondered...however, his symptoms seem to flare the worse with spicy fatty foods. Wonder if that points us away from a gluten problem?
Nameless, the stomach migraines have been mentioned before...what do you take when you get one like that?
Rebekahc, thanks for the dye info. Carefulmom, he's had a ton of bloodwork ruling out all kinds of stuff, I'll try to find my copies and see if your suggestions have been tested for.
Growing up red dye would cause vomiting for me and depending on the amount, hives. Even now, depending on the amount, I can get itching. Not sure if it would be an allergy or an insensitivty because I am hive girl, some have reasons, some are stress related.
Could it be viral related - both boys have had stomach viruses that with violent vomiting that would cause runny noses and just the acid alone would cause uncomfortable feelings in their throat (have been there myself). I always feel better when the second one gets it though (even if it means more work for me LOL)
Have they considered his gall bladder - fatty or spicy foods would trigger mine. Even now, sans gall bladder, I have to watch the amount of fatty food. But I went through a phase of being the sole person to get vomiting in the house that made me go back and think, that wasn't viral. But I had the added benefit of getting the worst attacks while pregnant so who doesn't throw up then. Did I mention that my gall bladder attacks were considered to be atypical and often diagnosed as strained back. It wasn't until I spent a week pregnant with constant vomiting they finally diagnosed it (after three different incorrect diagnoses).
My3guys, to test for parasites, they collect stool samples. There is a high false negative rate so there is another test they can do called an Enterotest where the person swallows a capsule. The traditional method to test for cystic fibrosis is a sweat test. It measures the salt in the sweat. It is done at a special cystic fibrosis accredited center, to make sure that it is accurate. It is not the kind of test that you could get at a place like Quest labs.
Please let us know what happens. It sounds like you need some answers, since this is not a short term problem. Keep us posted.
I'll see what his GI doc says...both his pediatrician and GI doc believe his diagnosis is correct, and his symptoms match his diagnosis. I don't like when he has these nauseau episodes, which is why I posted. Sadly, they are part of this stomach disorder, and I'm told there is nothing else they recommend to control the nausea. Based on your description of those tests, he's never had either done. I'll google symptoms for those things, but I'm curious why you thought of those possibilities?
for stomach migraines (the nausea without the pain-in-the-brain, but you can feel the nausea in your head) - I use my regular abortive migraine med: Maxalt
Adrienne
Quote from: my3guys on January 22, 2012, 06:56:34 AM
I'll see what his GI doc says...both his pediatrician and GI doc believe his diagnosis is correct, and his symptoms match his diagnosis. I don't like when he has these nauseau episodes, which is why I posted. Sadly, they are part of this stomach disorder, and I'm told there is nothing else they recommend to control the nausea. Based on your description of those tests, he's never had either done. I'll google symptoms for those things, but I'm curious why you thought of those possibilities?
Testing for cystic fibrosis is part of a workup for growth failure. The nausea could be due to deficiency of digestive enzymes which is part of the symptoms of cystic fibrosis. Cystic fibrosis classically has lung symptoms (asthma like symptoms or recurrent bronchitis/pneumonia), but cystic fibrosis can present with growth failure and nothing else. Remember when dd was having growth problems three years ago? (age 13, really tiny, no signs of puberty) She was tested for cystic fibrosis and was negative.
Parasites can present with the symptoms you are posting about. Where I live, we are near Mexico, have a big immigrant population, and parasitic infections are common. It may not be the first thing your ds`s doctors think of, since they are not in my area.
One more thing that I thought of. You may remember dd had reflux until age 2. She almost had surgery for it. Her symptoms were not improving and she was on several different reflux medicines. At one point she was having a test done that required her to be off meds for a few days. As soon as I stopped the meds, her symptoms resolved. I was floored. The meds were causing all of her symptoms. You might want to try stopping the reflux meds for a few days (with the doctor`s permission) and see if the nausea stops and his appetite improves.
Thanks Carefulmom for all the info!
He's been off reflux meds for a whole year now, and generally doing well other than these occasional nausea attacks. I'm schedule an appt with his GI doc. We haven't seen him in a year. I'll bring your questions to him.
Oh, and I realized I forgot to answer Janelle. They don't think he has delayed gastric emptying, but they haven't done a formal study. I can't remember why, but that was discussed as a possibility.
I had all sorts of weirdo food symptoms that ended up being gluten. I had a huge long list of things that bothered me that now I am fine with. When my doc wanted to test me for celiac I thought he was nuts. If I had as much as one bite of salad it would rip my insides apart but bread or the like did nothing. My symptoms were anemia, fatigue, lots of headaches and a reflux like pain in my stomach. I had none of the typical digestive symptoms. It was quite random what would bother me and what wouldn't.
If all else fails, it might be wroth trying it for a month or and see what happens. You really have nothing to lose.
This is good
http://theglutensyndrome.net/GlutIntolCircle.pdf (http://theglutensyndrome.net/GlutIntolCircle.pdf)
Thanks Caitlin! I'll definitely take a look. His appointment is in 2 weeks, I'll bring everyone's information and see where we land. I appreciate all the extra brain support!
He had another minor incident yesterday :-/ Again, he'd had some candy with dye. I made his steer clear of red. No more things with dye for him, which isn't world ending by any stretch...but no more gatorade, or candy at all since he can't eat chocolate any more. Food can be highly annoying at times! :rant:
Food is annoying.
Can he have Yummy Earth Organic candies - they have a variety of lollipops, gummy bears and candy disks that are colored with veggie juices.
Most of the other candy options I am thinking of however are chocolate from the UK but they tend to be colored with veggies and not insanely colored like our candies here in the US.
I'll look at those candies, YKW, thanks.
Thoroughly confused and wound up at the moment. At a friend's house, he had a whole gatorade with no problem a few days ago. And he had another intense incident of sudden nausea yesterday, with no offending foods I can pinpoint. He vomited for the first time with the nausea. This morning he's fine, so I don't think it was a virus. He was doing great for 10 months, and now just this month, he's had three episodes. This doctor's appt can't come fast enough!
My3guys, did your ds have his appointment? How did it go?
Thanks for checking Carefulmom. We had his appt yesterday. His doctor thinks these episodes are dehydration. Apparently, kids with functional dyspepsia can get dehydrated easily, and feel more severe symptoms from it. So for the next two weeks, he's to drink alot of water, eat some salty foods, which help retain water, and see how he does. If he's not doing well, then he may change anti-nausea medication or run some tests or both. The good thing about this doctor is that he really seems to know his stuff, believes everything we tell him, and is confident in his answers, so is very reassuring. And I'm happy we already have a plan B if he's still struggling in a few weeks. I went round and round with his pediatrician and other GI docs before him, so his approach is quite refreshing. Fingers crossed that it's as simple as drinking more water.
That would be great if that is all that is. With other kids with allergies, it would be normal to expect the worst. Keep us posted....
Glad to hear you have a plan with back-up. Sounds like you've got a great doctor as well! :thumbsup: