My 17yr old son has abdominal pain for 18 months, need help please.

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Starting Jan. 2016 my then 15yr old son started with abdominal pain that is burrning,stabbing pain. Pain gets worse when he trys to eat or participate in any activity even walking. the pain is twenty four seven, as well as nauseated constantly,frequently vomits food,liquid and bile. He has frequent diarrhea,joint pain,mouth ulcerations(had ulcers in his throat at one point),headache and chronic cough. The endoscope & colonoscopy were clear and tissues looked good, biopsy was negative as well. Abdominal CT scan showed mild inflammation and mild wall thickening at ileal loo.terminal ileum,cecum and second part of duodenum.  Doctors said he has IBS and Functional Abdominal Pain? he has been on every medication available for IBS but nothing helps.  Dr will not diagnos with IBD or use those meds because scopes were clear, I need some help with what to do next? We have also tried acupuncture, meditation,relaxation techniques, ginger,probiotics,peppermint oil.ect...  He is so misserable he is in bed most of the time or on the couch.  Thanks for any suggestions.

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  • Posted

    --> Calprotectin in stool test done?

    --> Ever fecal occult blood (FOB) the immunological one (for human blood only) stool test done? (you can buy them online and have e.g. 5 at home yourself and do the testing. We had the experience, whenever stool was sent in e.g. for parasites, that the FOB came back negative, but at home often was on/off positive)

    If a FOB was positive, the indication for a capsule endoscopy would be given to rule out small (like coin sized) IBD areas in the small intestine.

    It is true, that IBS can cause wall thickening.

    You can actively trial and error different diets.

    A typical IBD diet is without any grains (I found it very hard to do), there are recipies online.

    Peppermint oil upsets my good normal non-painful intestine into a 'fire' state, it really burns. So it could also aggrevate symptoms. Trial and error.

    Not everything well meant works well.

    But the 2 stool tests would be my next go.

    Has he been well checked (PCR test) for parasites and even the entamoeba histolytica and blastocytis?

    3 stool tests. ;-) It needs a 3 day collection test, not just a one off. Sometimes does tests are only done interstate (we had to send ours from Victoria to NSW).

    All the best!

     

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    • Posted

      PS: 

      We btw also had all 

      rheumatological factors 

      looked at at a rheumatologist as some systemic diseases can manifest in the GI system.

      We also went to a fully medically trained physician with naturopathic training additional to get the 'base' health up as possible, not running into malabsorption/deficiencies, she checked for VitBs, D, Zinc, copper blood tests, infection serology and the likes and then supplemented accordingly. The downside: some suggestions are simply not affordable and some tests we had to wait for until saved up for them. 

      Like a "fecal microbial analysis" (FMA) of stool (looking at all bacteria, composition) and supplemented specific probiotica 

      (we need to take butyrate producers, which you don't easily get. It's not the common lacto and bifida mix. The best butyrat producer probiotic for us is made in Japan, the second best with a mix we don't need, but well, in USA. I have to do international orders. The Eubacteria is still unfortunately not available as a probiotica, but Clostridium butyricum is. Butyrate producers are ESSENTIAL against GUT INFLAMMATION.)

      We also tried expensive acupuncture and cupping with no relief.

      I might look into Japanese (without needle in) acupuncture as a relaxation option, but I doubt it will cure the cause. It's more helping to handle life in pain. Currently she can't lie down without vomiting, so has to be put on hold.

      Same here, the oh so good walking always triggered pain, especially handstands or splashing in a pool or at beach. Now, being without sport for a year has not made things better though. Hence I think there is something physical going on, a subtle kink, compression of nerve or vessel, or change, not the obvious to the blind eye tumour. I doubt that every radiologist is trained and good seeing the smallest changes or if changes that small would show up in the first place.

      There are contiditions like

      MALS and SMA 

      that you might want to check in the symptom box or get checked for via ultrasound (compression of poor duodenum due to a ligment or the angle of mesenteric artery, causing the stomach not to empty well = nausea, vomiting). 

      We also had a gastric emptying study done due to massive vomiting for a month, that luckily got a bit less (still daily) and excaped the tube feeds. But having a delay, is not a diagnosis, it's like measuring temperature, you have fever or not, but it doesn't say as to why. You have delayed gastric emptying or not, but it doesn't say as to why. For me it is a confirmation of a symptom.

      We trialed and errored extremely many diets (for 1-3 months), FODMAP (well, we had all breath tests done and colonic biopsies for enzymes, all good, so no surprise that FODMAP didn't help, when one has enough fructase, lactase, maltase anyway), grain free, dairy free, egg free, low fiber, GAPS. to no avail. 

      Now taking a certain digestive enzyme and it seems to help with digestion, but still: pain is there and vomiting nausea too.

      There are still a lot of blank spaces in your son's history (that's why I mentioned a bit of our saga) and investigation and I know how frustrating it is since my girl is a chronic pain patient with nausea and vomiting for more than 1.5 years. 

      We got put into the 'psychological' draw very quickly, one pediatrician and one pain specialist opting for that option straight away without any imaging or blood test. I find this neglicence. Another doc saying 'everything' was looked at. When I hear 'everything' and know of quite some very rare diseases, that have not been investigated, I see red and start foaming.

      We had a half heartedly done MRI enterography and porphyria test, so dodgy, that the 'negative' results do not rule out anything.

      We are now on Chlorpromazine against nausea, which seems to help, even the instant gratification of ondansetrone is preferred. Since her ECG wave (QT) is ok, she could take both. For pain after a year due to lack of sleep and getting into a very bad dysautonia (why do they wait so long?) finally got an opioid against pain and wished to have gotten it earlier since so much school was missed, isolated from friends, unable to function more than 1-2 hours a day.

      We have discovered Lyme disease and hEDS, but not sure if that is explaining everything.

      I hope you find an issue, that can be tackled (and maybe let me know as we are on the search still, since I know my child, this is not anxiety or teenager hormones. Her pain is in one exact spot, appendix out, pain still there, exactly there. Where is his pain?)

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  • Posted

    Where is the burning, stabbing pain located? Is it in a specific area like middle upper abdomen, upper left, generalized, etc?
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  • Posted

    Hi. Abdominal CT should have picked up autoimmune pancreatitis, so you may need to trust the doctors that he doesn't have that or double check the CT images if you know what you are looking for.

    On the other hand constant burning stabbing which comes on when walking sounds like Anterior Cutaneous Nerve Entrapment Syndrome. The other symptoms may be something else.

    Is the pain localised? If so do Carnett's test on the spot.

    Find the exact spot of the pain. Get your son to lie down. Press a finger-tip in. Does it hurt?

    Now, bring your fingertip out, but keep it on the same spot. Get your son to raise his head (thus tensing his abdominal muscles). Press the finger in again.

    Does it hurt more or less?

    If it hurts more with tensed abdominal muscles then start googling. Note that in rare cases you will get center-line upper-abdominal pain with ACNES.

    Good luck with your search

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