Really Need Advice - Son in pain for 7 months

Posted , 4 users are following.

Hello,  Sorry in advance but this will be a long post.  I'd love some advice!  Long story short, my son was sent to ER in January with severe abdominal pain.  CT Scan showed mesenteric lymphadonitis and slight inflammation of the appendix. Appendix was removed.

A month later he was really sick again and ended up having Mycoplamsa in his throat.  All through the summer he had stomach pains.  Speeding up to currently, his pain is so bad for about 3 months.  Had multiple CT's done which only ever showed constipation.  They did a week long clean out even though he always had a bowel movement daily.  Now he struggles to have bowl movements and takes Miralax every day.  I swear the clean out just made things worse. 

We switched pediatricians because his previous one gave up on him and said he needed counseling.  His stomach pain is so bad i can't rest my arm on him, he has difficulty bending over, difficulty walking, he can no longer participate in PE.  He doesn't play with his friends much outside anymore because every movement hurts his stomach.  The pain is located around the belly button area.

He had an endoscopy done which showed high eosiphinills at the base of his esphagus.  This indicates a possible food allergy.  Gastro doctor said he doesn't feel that would cause such severe pain.  He only thinks IBS and again he suggested counseling.  Both the pediatrician and the GAstro refuse to order an MRI.  Gastro doctor ordered a Calprotectin test to check for inflammation and I just gave the stool sample today.

I feel like no one believes my son and my son feels so defeated and is tired of being in pain.  We've gone the probiotic route, peppermint oil, acid medicaiton, prescriptions from ER, etc.  Nothing helps.  I've called a therapist today to have him talk to someone about his pain.  He also has a ticking disorder that is REALLY getting out of control.  His ticking is usually brought on by illness and stress and I'm sure hurting for so many months cannot be easy for a 12 year old.  

I feel lost that I haven't been able to help him.  Do you all have any ideas of what is going on?  I'm praying the poop shows high inflammation just so finally we have a reason for his pain but  I'm afraid it will show nothing.

Any advice?  Thank you for reading htis long post!!!

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  • Posted

    Don't worry if the stool sample shows nothing along with the other tests results.  When this happens, IBS can be diagnosed which is a better diagnosis than IBD.  The fact that a possible food allergy has beeb picked up may point to IBS.   I would keep a food diary to check for food triggers and ask to be referred to a dietician and ask about the Fodmap diet.

    When I developed stomach pain and constipation followed by nausea and loose stools last year, seven doctors were baffled as all my tests were negative.  An eighth doctor diagnosed IBS after three and a half months of panic.  After this, my symtoms started to improve.

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    • Posted

      WE've been told it is probably just IBS.  I am not comfortable with that diagnosis. Pain lasting for 7 months that is constant, never eases, and wakes him at night I don't think would be IBS.  He hurts to even move :-(

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    • Posted

      When I started with my IBS, it kept me awake every night, I had a lot of pain, that was constant and painkillers only reduced my pain.  This is the way I was for three and a half months. I also had high 24/7 panic and anxiety.   IBS can cause the level of pain you describe.  I too hoped and hoped for my tests to show something but they were all negative and I crashed into despair.  Once I accepted my IBS diagnosis, my reduced anxiety really helped my symptoms.
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  • Posted

    I am not sure where you live or what type of medical protection you have and also don't know if you have access to a private MRI and if you can afford to get one on your own. I had to this with my hip replacement - pay for my own MRI and show them the results and I finally got my hip surger. I am not deciding to go that same route for my stomach, pay for the MRI and then wait for results and if it shows something I will then be talking to my doctor. It is just a thought and suggestion because as it says we have to listen to our bodies and take our own action if need be as the medical system these days seeems to be failing us. Good luck in getting some help for your son I feel for him because I know what kind pain I am dealing with.

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  • Posted

    Hi Michele,

    Feeling for you!

    The Calprotectin (a white blood cell protein) is a good start.

    Though be aware (and docs often take lab results far too 100%) that it is a great parameter to confirm inflammation of the bowel, but not to exclude it.

    in 8% of children, in 6% adults this test is false negative, looking in more 'biopsychological' publications, their statistic says 'only 2% false neg', which is still not 0%.

    As to Eosinophilic oesophagitis, it is an immunesystem disease, allergic reaction, can be food, but also asthma triggers pollen and other. Please search the internet for it since it can cause abdominal pain. One would also need to know how many eosinophilic leucos were found per unit since this diagnose actually varies highly from lab to lab as count cut off, as when to call it eosinophilic oesophagitis. What some call positive for it, others still count into the normal number. Please read about it.

    You should have a blood IgE, the stool can be tested for IgA and Alpha1 Antitrypsin (we did this together with Calprotectin test since the constellation can say something about if food triggered allergic or not), skin patch test for foods.

    I would not wipe a positive eosinophilic oesophagitis from the table just like that.

    It's a positive test, hence should be started to be tackled and investigated (like mentioned above). Pain is usually more upper belly, but not neccessarily.

    Biopsies should have been tested for enzymes (fructase, maltase, lactase) and gluten intollerance to be sure that is ruled out.

    To constipation (my girl suffers ascending colon constipation due to a big hanging down loop of transverse colon most likely plus gastroparesis (gastric emptying study confirms it, easy , pain free test) indicating a slow transit function everywhere in GI).

    We were on Movicol daily and were asked to increase dose when still pebbles would appear. The experience: yes, Movicol helped, but there was the Movicol movement and then the other pebble movement. One could clearly see, which meal it was, that made it out and we did not take Movicol with every meal.

    Since I increased the probiotics to twice a day and take Magnesium Citrate ('Calm' bubbles up in hot water, dilute it with Orange juice as the taste is yuck othwise. Wanted her to take Mg Malate, but the 'pills' are really too big for her to swallow),

    the stool becomes more frequent on its own even when we forget to take Movicol. Magnesium has a tendency to push to the diarrhae side, so 1 teaspoon a day is currently enough. 

    Also there is always the possibility of the small bowel to really have something despite neg Calprotectin, that cannot be seen via any scopes and small lesions cannot be seen by an MR enterography.This can be investigated with a pill camera even in children. Usually docs wait until symptoms really persist longer than a year.

    (Either they can swallow this thing, practice with jelly thingies, or placed during endoscopy. I was disappointed this pill camera was not placed during endoscopy into the duodenum, when there anyway. No, one has to do one thing after the other and go again.....)

    I can only say from our experience, that underlaying Ehlers Danlos disease (collagen disease, genetic) does not help the belly and can cause incurable pain. If we knew earlier, she would have not played oboe, carried heavy school bags and done circus. There is no cure, but one can help by a list of do and don'ts. (just look if your son was hypermobile, thumb to underarm? elbow overstretch?)

    We also try acupuncture, cupping, chinese herbs, supplements.

    Porphyria sets on often in puberty, you might want to investigate this path too and mention to doc.

    All the best!


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    • Posted

      Oh thank you for the number, 35 Eos per hpf is positive;

      (high power microscopic field, which should be 0.55mm....the definition of hpf is often missing and one can get different microscope objectives magnifications, so which one?, so easy to define the area size and yet so often missing) is pretty clear over no matter if 15, or 20 cut off.

      Since it was just distal, it could be GERD, due to reflux, too. Eos are not specific for food/allergic reaction only, also acid reflux does the trick. But sometimes it is not GERD and response to PPI still working.

      (We were neg for Eo count, so did not read much further, but usually PPI is trialed and biopsy retaken to see, if the Eo count changed. EoE is a symptom of many possibilities.

      I find this highly invasive especially for a child.)

      On the other hand this 'just found distal' is not fully correct since biopsies are taken in different locations for the very reason, because it does not show up everywhere, is state of the art and 'just distal' is no dismiss reason.

      There should be gastric biopsies too and together with these results the EoE in distal sample might have  a different significance, but not the location alone.

      (Band aid medicine after PPI trial would be budesonide if it was clear EoE; a steroid, that does not get absorbed into blood stream. But if he had no 'ring' change sign in esophagus or swallowing problems like adults with EoE often have....I think it's not really indicated, children seem to often have EoE without dysphagia.) 

      EoE can also be caused in Crohn, any inflammation (that can pass)/infection, drugs that are taken, ....

      Foods would be my first check, celiac is excluded for sure?

      (biopsy, antibodies - for both gluten diet is needed; genetically - this does not confirm diagnosis, but rule out since gene often is not switched on)

      Oh the fight for the pill camera. We are shooed too so far, but as time goes on with constant pain, so does the indication rise.

      I would maybe ask your GP for a referral to different gastro doc just for a second opinion about EoE finding. After Calprotectin test result possibly. 

      I enclose a few links since I find ncbi very helpful and objective.

      All all the best!!!!

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