17 yo daughter has been suffering with this for over a year.

Last year we have two emergency room visits and worked with a pediatric gastroenterologist we were referred to through Children's. At first the Doc seemed good. But in the end, she performed or ordered a series of different tests procedures, found nothing and pretty much faded away without any resolution to the issues once the obvious tests were done. Tests included an endoscopy, several different ultra sounds, a HIDA (?) test for gall bladder issues (we were really hopeful it might be a gall bladder thing so it could just be removed and resolved - but apparently not), several blood work workups, and an allergy test. All the procedure tests came back normal. Allergy test revealed a couple minor allergies but she offered no real advice based off of it.

The condition is dramatically and severely affecting daughter's quality of life. She rarely goes out with her friends for more than a bit. Typically home early if she does because she feels bad. Has low energy for activities. Has lost a fair amount of weight that she didn't need to lose. Says the pain is "under her ribs," usually on the right side.

We have tried some diet restrictions and changes, but they are hard for a teen to maintain. She seems to have become used to throwing up often (concerning) and seems to ignore that symptom. But some days she complains of pain that is basically debilitating and just stays in bed.

Nothing we have tracked seems consistent. Low fat and plain food seems to help - sometimes. Hi fat rich food consistently seems to hurt. . Gluten free may help some. But then often it doesn't seem to matter at all. She wakes up. Has a piece of toast, throws it up, has bad pain, with no obvious reason.

We asked about doing a colonoscopy to check for diverticulitis (there seems to be some of this in wife's family history,) but the doctor said no for a person her age.

We have also seen a Ob/gyn thinking maybe endometriosis. They did not do any actual invasive testing on her, but put her on BC, saying that would be the first step either way. Has not changed anything noticeably after 3 months.

I suspect there may be a stress/anxiety component at play, but again, we cannot pin it down consistently.

I am extremely frustrated and disappointed in the doctor. She talked a big supportive game at the start, but once the obvious easy tests she could do and charge for were done, she had very little to offer. Not additional steps, other specialists, ideas, nada.

Not asking for a medical diagnosis online. Hoping someone might have dealt with something similar and or have some doctor referrals for Docs who will think outside of the box and help figure this problem out, so she can stop being miserable and live normally. We are in North Dallas as far as location for docs,

Cannabis has yet to be tried, I assume? Or any cannabinoids?

I am a 41 year old female and have had almost the exact same issue for about 4 years. I underwent all of the same tests, and they didnt find anything. The only thing that has helped is a prescription for dicyclomine. It is a anti-spasm med that is often used to treat IBS (from what I understand). I take it now when the pain starts and it usually helps within a few hours. I hope she can find something to get her relief!

does your daughter have anxiety or depression?

Certainly no medical expert here but I would be tempted to start on a very restricted diet and then introduce one food at a time to see if there is a trigger. They've had to do this with one of my nephews.

Sorry to hear about her condition. Sounds absolutely terrible.

Haven't tried Cannabis.

Have tried zofran - doesn't really help, and Cyproheptad( which I believe is an antihistamine that has off label uses for nausea - also did not help.

Part of my hope is to find a Doc willing to try different options.

She is a bit high strung, takes adhd medicine on school days, and a low dose of zoloft for mild anxiety. I would describe her anxiety, as she gets herself worked up about high stress situations - tests, big events or performances, tryouts, etc. As I said originally, her pain seems worse in those high stress times, but is not exclusive to them.

Chrohns should be considered. It sounds like she only had upper GI evaluated.

This could be just IBS, but on the more severe end.

Google FODMAP diet. If she has not tried this I strongly suggest she does it STRICT for 3 weeks. If better IBS much more likely

These diagnoses are out of my area of expertise, but a couple of thoughts come to mind.

Inflammatory Bowel Disease: IBD (includes both Crohn's Disease and Ulcerative Colitis) could cause these symptoms. The onset is often gradual and the diagnosis is frequently not obvious at the onset. A colonoscopy with intestinal biopsy is usually required to make a diagnosis.

Eating Disorders: Your daughter is in the at-risk age group for a diagnosis of an eating disorder. The unintended weight loss and lack of concern with vomiting certainly raises eyebrows. Many times, people with eating disorders have perfectionist, obsessive-compulsive disorder-type personalities and like to feel in control. The child's eating disorder is just one manifestation of attempting to achieve control.

Again, I may be way off base, but these are both difficult to diagnose conditions that are relatively common in this age group.

Best wishes to you and your daughter finding a diagnosis and treatment.

GSP and Gordon Ryan (the ju jitsu bro) have both been very vocal about Ulcerative Colitis lately. Both were recently diagnosed. Sounds like similar issues.

Hi; not a doctor but I wish you Godspeed on this diagnosis and treatment.
Can you tell the nature of her vomiting? Is it daily? Is it sudden, like having to run to the bathroom? Does she tell you about it when she does vomit?
Are there issues like diarrhea/constipation?
Again, best wishes in this, thanks for sharing.

I'm a female (saying that since my handle makes me seem male). I have struggled my whole life with the mind-gut connection. Debilitating nausea and diarrhea that flare up with a fight or flight response. Back in my dating days, it was awful. That feeling of being on display and being evaluated was just awful. I couldn't eat on dates. I couldn't do sleepovers when I was little. I couldn't do sleepaway camp. As an adult advanced into my career, I've had nights that I thought I was dying. It's taken me a lonnnnnnnnnnnnng time to figure out how to manage it. (I'm 48).

Xanax is the biggest help for the mind-gut thing. I take .25 - .5 mg as soon as I'm triggered (or proactively if I know I'm heading into a stressful situation) and it has nearly eliminated my symptoms. Now that I'm older, I don't find myself encountering situations like that very often. I rarely touch the xanax anymore. I find diaphragmatic breathing helps as well.

She's in my thoughts.

Another 41 year old female here who has/had something very similar. It started in June of 2020. I also went through all of those same tests. I was thinking it was related to eating eggs because it usually started around 10-11am. Or we had bad batches of eggs. I was also prescribed the dicyclomine. It seems to have gotten better. I haven't had an episode since 2020. I also wondered if it it was a virus of some kind. For a little while I wondered if it was COVID and how my body reacted to it. The doctor thought gallbladder. I took the medication and changed to very bland low fat foods. I haven't had an episode since 2020.

The pain really was unbearable at times. I almost went to the ER a few times. Pain pills didn't touch it. The nausea and sometimes vomiting were unpleasant too. Same spot too. Below ribs and more on right side. It was so awful and depressing.

Hope she gets relief and things improve soon! Praying for her!

A friend of mine has hemochromatosis and she gets pain in that area. She's been to the ED several times for relief (although it never really helps). She's even had exploratory surgery. I think that's the area of the liver and the pain is from having too much iron. She doesn't eat low iron foods like she should.

Thanks for the responses.

I wondered about the IBD type stuff and was a bit surprised it wasn't brought up by the Doc. Was going to ask about it, but when the Doc called with a verbal summary of the allergy test and kind of said adios, not suggesting anything further, I was kind of stumped. Since then we have been drifting a bit on it trying to decide where to go from there. As I said, we asked about a colonoscopy and she did not seem interested. My snarky side thinks she doesn't do those and once she was done with the tests she could do, she was out.

In questioning at various visits, daughter doesn't complain about diarrhea or other bowel movement type complaints, but I couldn't say if that is conclusive or not. Nor could I really say that the vomiting and the pain are always together. I don't think they are.

The thought of an eating disorder definitely has occurred to us. She does not advertise the vomiting anymore, did at one point though and doesn't try to hide it. Unfortunately, I think she has gotten used to it. I don't think she is making herself vomit. But I could see it possibly turning into a problem. She has always been something of a vomiter (her pediatrician's word from years ago.) Regardless of what illness she has, throwing up is generally one of the first symptoms or at least included in the list. But this combination has really only been a thing for the last couple years, getting really bad about a year ago.

The main reason, I don't think the vomiting is intentional is the times where she complains about the pain and the shear amount of things she decides not to do because she doesn't feel good. She is a popular and social kid. She has a lot of friends and is very involved. When the episodes get bad, she just cannot go do things or comes home really early. Rarely spends the night at friends lately. We know her close friends well enough to know it is because of feeling bad. She forces herself to go to events for her activities, and at times struggles to make it through them.

SHe had an episode today, probably because we went out to dinner last night and she ate too much rich food too fast. We actually have some of that dicyclomine from when my wife had a diverticulitis (they think) event last fall. So I gave her one today (yes, I know, BAD BAD ILLEGAL - whatever, they are basically the same size and we are desperate.) Anyway, she said it did help a lot. Awesome! Unfortunately, she said it also knocked her out and she slept all day. Not exactly a viable option for all the time.

Definitely need to explore the IBD angle. Any recommendations for an appropriate specialist in the north Dallas/north suburbs area? Feel like she is generally more comfortable with a female doctor, but not a deal killer. Will be looking into the FODMAP stuff with her as well. Unfortunately, her being a teen and frustrated with it all she goes back and forth on good habits. At times I think she gets frustrated and says F it, I'm going to hurt either way and just eats whatever. We have asked and asked her to keep a food journal. She will for a few days then stops.

A couple of thoughts. Not saying don't follow up on the lower GI exam but previous md may have thought it not needed if daughter is reporting normal bowel movements. IBS is typically marked by abnormal bowel movements. I still think it's a good idea to follow up on the lower GI.

Absolute said:

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The main reason, I don't think the vomiting is intentional is the times where she complains about the pain and the shear amount of things she decides not to do because she doesn't feel good. She is a popular and social kid. She has a lot of friends and is very involved. When the episodes get bad, she just cannot go do things or comes home really early. Rarely spends the night at friends lately. We know her close friends well enough to know it is because of feeling bad. She forces herself to go to events for her activities, and at times struggles to make it through them.

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I would encourage a psychiatric eval as this has definitely disrupted her life and likely her mood. I would not rule out eating disorder based on the above statement. An eating disorder itself can cause physical pain and general unwellness that would make anyone avoid activities they once enjoyed. Also remember there are many forms of eating disorders that do not fit neatly into the category of anorexia or bulimia. Some people with eating disorders have the ability to engage in "hands free purging," and purging is so ingrained in their daily life that it is not upsetting or concerning to them.

Again I wish you the best in this journey. You are doing the right things.

You mentioned that gluten-free may help some but maybe try to fully commit to this? I have had very similar issues for years and my pain was also in the same spot. I always thought it was rich foods, lactose intolerance, getting older, red meat, coffee, etc. I recently tried gluten free and it has made a world of difference for me (no intestinal cramping, loose stools, bad gas, bloating, nausea, much more energy, no depression, no dermatitis). I thought eating oatmeal and multi grain toast was bland enough but it was making double over in pain after a couple of hours. Pasta was always a no no but I just assumed it was the creamy sauce (could be that as well).

Cut out anything with wheat, barley, and even oats. Oats are ok by themselves but are often contaminated when processed with other gluten filled products unless specifically labeled as such. No beer, pasta, bulger, and many salad dressings and creams and gravies also have gluten.

Many times the tests are inconclusive unless the subject has gluten in their system at the time of the test. It has been a game changer for me personally and I felt a noticeable difference after a few days.

Good luck and God bless.

FODMAP is super restrictive but it may work.

I suggest that if you do go the FODMAP route, you have to be working with a dietitian.

Latest update.

They did a test for stomach motility. Came back smal percentage slow. Apparently this can cause her symptom. Treatment is erythromycin before large meals for a while. Increasing motility is supposed to be an effect of the erythromycin.

Has been on it since Sunday. Initially there seemed to be some stomach pain (different pain) issues and she missed two more days of school. Last couple of days, she seems to be doing somewhat better.

Fingers crossed.

I would use cyproheptadine over EES for gastroparesis. Honestly I would put this teen on an SSRI this just screams depression and anxiety to me.

That was one of the first drugs the doc tried last year. Did not appear to help.

She does take zoloft for anxiety. She definitely has an anxiety component. Think it is more tied to adhd than depression. I have long believed it plays a role in this. The stomach stuff is definitely worse when she is under a lot of stress. But the correlation is not perfect. Nor does she seem to really show any particular signs of depression. But I could be wrong. Would there possibly be a better choice than Zoloft?

After the initial couple of days of getting used to the erythromycin, she seems to be and says she is feeling much better. So I am hopeful.

could do stool tests prior to colonoscopy to check for IBD (not diverticulitis) -- though, if she had an IBD i would think that stool complaints would been a bigger issue


to me, it sounds like IBS stemming from anxiety/depression, i prob would not use erythro for the delayed emptying scan -- i would try to optimize the anx/dep meds, possibly a change off of zoloft -- i would avoid xanax -- but i am only a neurologist

Absolute said:

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That was one of the first drugs the doc tried last year. Did not appear to help.

She does take zoloft for anxiety. She definitely has an anxiety component. Think it is more tied to adhd than depression. I have long believed it plays a role in this. The stomach stuff is definitely worse when she is under a lot of stress. But the correlation is not perfect. Nor does she seem to really show any particular signs of depression. But I could be wrong. Would there possibly be a better choice than Zoloft?

After the initial couple of days of getting used to the erythromycin, she seems to be and says she is feeling much better. So I am hopeful.

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For this kind if case I would get a Genesight to help with drug selection. If you don't want to go that route, it helps to know if anyone closely related did well on a specific SSRI.

https://genesight.com/gene-test-mental-health-medications/?utm_source=bing&utm_medium=cpc&utm_campaign=branded&utm_content=1137995251056993&utm_term=genesight&ads_cmpid=394580708&ads_adid=1137995251056993&ads_matchtype=e&ads_network=o&ads_creative=&utm_term=genesight&ads_targetid=kwd-71125240275149:loc-4126&utm_campaign=&utm_source=bing&utm_medium=ppc&ttv=2&msclkid=4ce7e3baa15a18efd9ec81f08905f37f&utm_content=Genesight%20-

I'm not a doctor but have dealt with IBS issues for years. Had colonoscopy at age 25 because I was at a loss of what was causing problems, which at times were very life disrupting.

Took 9 months postpartum in 2018 to get diagnosed with an anxiety disorder. Got put on Lexapro and BAM, IBS issues seemingly disappeared overnight.

Unfortunately, the Lexapro caused some unpleasant side-effects so I tried a couple other meds: Viibryd and Zoloft. Both of these worked well for a while but ended up being harder on my gut and exacerbated my IBS issues about 4-6 months after starting them, even at very low doses. How long has she been on the Zoloft? This may be the case with her though I will say I am an anomaly when it comes to medicines. I'm highly sensitive to anything and everything (which the gene test I did, mentioned above, showed.)

What about probiotics? Has she tried any? There are specific bacteria strands that help with all IBS issues. I would recommend looking into it and trying multiple. I stopped taking mine a while ago and need to get back to taking them as I notice a difference (more pain and bloating).

Best of luck.

We did something like this 5 or 6 years ago related to the ADHD. Not sure if itchecked SSRIs as she wasn't taking them at that time. Not sure if it was the facility/practice we went to or what, but it was not seemingly very helpful or informative. But I don't remember the specific details that clearly, other than we found it to be completely unhelpful in the end.

After that not helping, we moved her ADHD care to an actual psychiatrist (from her pediatrician) who changed her ADHD med to Focalin (which has worked well with less side effects for her) and was the one to put her on the Zoloft. I can ask him some questions next time we go in.

Are there specific negatives of the current treatment? My understanding was that it would not be permanent, but more of a jumpstart type of thing. She seems to be doing really well for the last 5 days. No complaints of the old pain nor any vomiting. Says that the initial "weird" stomach feeling she had with it has passed/she has gotten used to it. She has also been in a really good mood, actually has been pretty good for a while moodwise.

Based on how crappy she felt for so long while we have chased this, I would think some depression would be expected. It dramatically affected her quality of life and energy levels and for so long, there seemed to be no hope in resolving it.

This is a long-shot since you are in DFW, but any chance she had a tick bite in the last few years? I know a lot of Alpha-Gal Syndrome sufferers have those symptoms. Since the reaction to mammal is so delayed, it can be very hard to diagnose.

Not a doctor and don't have a ton of insight but wanted to say that my thoughts are with y'all and wish you the best. I hope you can resolve this.

Sometimes psychiatric medications can stop being as effective or stop working altogether. So it might be time to switch things up. Also, if she's throwing up a lot or having a difficult time eating it's possible those medications aren't being absorbed into the body as well as they should.

I can't imagine there isn't some level of depression with this. Living with this would be a real beating on anyone and being depressed as a result wouldn't be surprising in the least.

Have they evaluated for SIBO?

Not sure if specifically. There have been several complete blood work ups done that were said to be completely normal. We have never actually been guven physical test results to review personally.

I had a 13 year old somewhat similar case yesterday and it came up again on my board questions so I figure I would bring it up as an option for your child.

Consider abdominal migraine treatment. This is the description from my board question.

Quote:

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Migraine variants include episodic syndromes thought to be related to migraine, but presenting with symptoms other than headache. These include periodic vomiting, hemiplegic migraine, abdominal migraine, and retinal (or ophthalmic) migraine.

The child in this scenario has a presentation consistent with abdominal migraine, thought to be a variant of migraine headaches. Abdominal migraine is characterized by recurrent bouts of abdominal pain lasting between 2 and 72 hours in a child who is normal and healthy between symptoms. Pain is generally constant; periumbilical or poorly localized; moderate to severe; and dull in quality. It is frequently accompanied by pallor, anorexia, nausea, and vomiting. In contrast to biliary or renal colic, pain is constant and dull rather than colicky. Patients have normal abdominal examination findings, which differentiates them from children with appendicitis. Attacks are recurrent, and formal diagnostic criteria require five episodes. Because symptoms overlap with other conditions that can cause abdominal pain, it is not unusual for children to require some degree of evaluation.

Treatment of abdominal migraine is symptomatic, and ibuprofen, acetaminophen, and antiemetics such as ondansetron are generally the treatments most effective during an acute episode. Given the history of normal imaging during a prior episode and the lack of findings consistent with appendicitis or other surgical pathology, neither abdominal ultrasonography or surgical consultation will add value. The presentation is not consistent with constipation (which is generally crampy and intermittent), and thus polyethylene glycol is also not indicated.

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This is the description from uptodate.com:

Quote:

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bdominal migraine Abdominal migraine is characterized by recurrent episodes of abdominal pain in an otherwise healthy child who is normal between attacks [20-22]. The pain is typically midline or poorly localized, moderate to severe in intensity, and associated with at least two additional features such as anorexia, nausea, vomiting, or pallor. Headache is not a prominent feature during attacks and may be overlooked if the child is not asked about it [23]. Photophobia or phonophobia are uncommon. Precipitating factors are often searched for but not commonly identified; concerns often include dietary and psychological stress.
Abdominal migraine is common, affecting up to 4 percent of children [20,21,23], including up to 15 percent of children with chronic periodic abdominal pain [24]. The age at presentation is usually between 2 and 10 years. Most children stop having attacks by early adolescence, but rarely attacks may persist into adulthood. However, most children with abdominal migraine evolve to develop migraine headaches. In one study of 54 children with abdominal migraine who were followed for 7 to 10 years, current or previous migraine headache was identified in 70 percent [25].
Abdominal migraine is a clinical diagnosis; there are no confirmatory diagnostic tests. The history and physical examination show no evidence of gastrointestinal or kidney disease [3]. The many causes of acute abdominal pain need to be considered in the differential diagnosis. Testing is determined by the history and physical examination, but the search for a mechanical process such as obstruction, kidney disorder, infection, or metabolic condition may be in order.

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We have considered the abdominal migraine. Never really found anything to treat it.

Have to say so far the current treatment seems to be working exceptionally well. She is past a full week (a stressful busy week with some big events) of not pain and no vomiting. For now I am going to say I think the doctor is on the right track and the treatment seems to be working.

Glad you are making progress. The SIBO testing is not a blood test but either a breath test or the gold standard test is an endoscope procedure. Seems like many are just labeled as having IBS when there is actually an underlying treatable cause that goes untested.