Daughter Still struggling doctors not got a clue any advice really is appreciated

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My 16 year old daughter has been suffering since April 2015 with constant nausea (but not being sick), acid reflux, dizziness, fatigue, headaches, joint pains and slow weight loss (appetite was okay) it came on all of a sudden.

She was admitted with suspected appendicitis in the September 2015 as she was having bad stomach pains/cramps sickness with a high temperature but it was diagnosed as mesenteric adenitis on a ultrasound scan. She has had a couple more episodes a few months later but never went to hospital.

Roughly from April 2016 she has had irregular bowel habits i.e. bouts of diarrhea, loose stools to not going regularly (but not constipated) all with lots of red/orange mucus, her periods have also stopped.

From the summer in 2016 along with the constant nausea (etc..) she has had constant stomach discomfort/cramps the irregular bowel habits (bouts of diarrhea, loose stools, mucus and not going regular) now contain blood (been checked for tearing), the stomach cramps get really bad before a bowel movement. She has slowly lost weight at the beginning even despite the fact that she was eating fine but since the stomach pains have been constant (summer 2016) her appetite has gone so the weight has significantly dropped. She also has discomfort when she eats.

She has had two endoscopy (January 2016 and January 2017) in which neither showed anything abnormal. A recent colonoscopy (February 2017) showed Melanosis Coli she has never taken any laxatives apart from the prep. She has also had a mri of her small bowel which came back clear (February 2017)She has done numerous stool tests, one of which showed raised levels of Calprotein at 113 (in December 2016)and again (April 2017)as being 701 currently waiting for new calprotien test results . She has also been tested for Hpylori and treated for it even though it came back negative (in September 2015).

The blood test in July 2015 results showed she was very low in folic acid. The blood test in July 2016 showed she very low in vitamin D, both of which have been treated and the recent blood test came back with everything within normal range.She is currently taking a multi vitamin, 2x20mg omeprazole a day and a probiotic. She has also tried mebeverine, domperidone,pizotifen,prochlorperazine, propranolol, alimemazine and ondansetron none of them have helped.

Family history; my father died from bowel cancer and my brother had coeliac and ulcerative colitis (passed away).

Her total weight loss was 21kg, her bmi went down to 13 but it is slowly raising due to nourishment drinks (Fortisip Compact) she is not eating as causes to much discomfort so is solely consuming the fortisips (1200 calories worth) and drinking Ribena as high in calories. She has been assessed for any eating disorders and any psychological cause that may be responsible, all came back negative which is what we expected/predicted.

This has been affecting her for over 2 years now non stop she doesn't have periods of feeling well at all just constant nausea, stomach discomfort and cramps, fatigue even with 12-14hours sleep a night and naps sometimes. She has not attended school since April/May 2015 and has had to withdraw from GCSEs due to of all these health issues.

She was 8lb born, normal delivery she was bottle fed and fed great no problems and was completely healthy. She had never suffered from any health issues until this began.

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14 Replies

  • Posted

    Hi Taylor1042

    Has your daughter been tested for inflammation ..i ask this because of the joint pain you mentioned....she needs to have an ESR blood test also a CPR blood test and an ANA blood test if these test levels are high this will indicate inflammation in the joints..she is very young to have inflammation but young people have been known to have it.....also has she had her B12 tested..B12 deficiency can also cause joint paint and gastro issues...go to your health provider and ask for these tests..because if your daughter is not eating then she will not be taking any B12 containing foods into her body such as eggs, milk, yogurt, some legumes, mushrooms and fish and some meats...there are hardly any veg or fruit that contain Vit B12...hope this helps...my best wishes to you and your daughter....

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    • Posted

      Thanks for replying

      She's had the crp and esr blood test they came back fine not sure she's had an the ana one but b12 test come back normal.

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    • Posted

      Hi Taylor1042

      That's good news!..i do hope you can get a diagnosis for your daughter...my sincere best wishes to you both......

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  • Posted

    If the fecal calprotectin is very high, it is possible IBD is prsent. Since your brother had it, this would increase the chance of your daughter having it too. To confirm IBD, a colonoscopy would be done.
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    • Posted

      Hi thanks for replying she had a colonoscopy done in February this year cause they had to admit her for a week cause her weight loss was causing problems with her heart and as she was scheduled to have a colonoscopy soon so they did it then along with an mri of the small bowel and X-rays etc but all came back clear except Melanosis Coli which is apparently caused by over use of laxatives which she's never used they did a urine test to check anyway which came back clear so they now saying the Melanosis Coli is nothing just one of those things.

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    • Posted

      Even if IBD and Crohs often sit in colon, especially in caecum near the valve, it still can sit in the small intestine and this is not reached by colonoscopy or gastroscopy.

      A clear colonoscopy does not exclude the existance of IBD.

      It just excludes the existance if IBD in the colon, where it is found often, but is not the only location.

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  • Posted

    Can't believe it, that whole thing got deleted, not just crossed out sections. ;-)

    Luckily I sent you pm.

    Here in short for other readers

    Anyway: 

    An MRI for small bowel assessment is not a 100% exclusion tool for IBD.

    It would need a capsule endoscopy.

    A FMA (fecal microbial analysis) can show, if certain good bac bacteria were missing.

    Butyrat producing Eubacteria are very important especially in inflammatory processes.

    All the best!

     

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    • Posted

      Thanks for replying

      We was thinking of the capsule test but don't think the dr will do it as he doesn't seem concerned cause nothing obvious is showing up and he thinks the raised calprotein level is down to her not eating even though she is consuming minimum 1200 calories in fortisip drinks plus Ribena drinks as high in calories. I'm surprised her energy levels are still none existent as she consuming enough calories but again dr not concerned. This is the second gastro dr we've seen the last one passed it off as could be ibs as just didn't seem interested was really keen at the start but as nothing showed up seemed to lose interest.

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    • Posted

      How frustrating.

      Change of doc indicated. Yet again. Yes, it happens, as long as you can afford somehow, please ask a third opinion.

      As mentioned in my pm (I can't put a brand name here) you need a different nutritional drink! Calories alone are not enough. There is one very very good one, that comes 'predigested'. But it can't be bought by yourself, it has to be ordered by doc or dietician.

      Also a high Calprotectin and clear colonoscopy is indication for capsule endoscopy. 

      We didn't get the capsule endoscopy, because Calprotectin was normal and FOB (blood in stool) was put down to fissures (even when there was no visible blood on stool, which never frightens me, the test for hidden human blood mixed in stool came back positive and negative and that's what I don't like.)

      It is a long journey, we are into it for 1.5 years and sometimes nearly giving up and then just pushing on knowning this is not just 'anxiety' and all that rubbish. 

      Calprotectin:

      "It is not a perfect test because some patients with IBS have raised calprotectin levels but false-negative IBD is unusual if we use the cut-off of 50?µg/g (for ELISA tests) and 15?µg/g (for PreventID POCT) recommended by the manufacturers. .... In those who have low-grade IBD, calprotectin will usually rise" quote ncbi. your calprotectin did rise and let's see what new test does show in value.

      As long as IBD in the SMALL bowel is not ruled out, I would not give into that. (MRI does not rule out IBD in small bowel, the lesions can be coin sized, invisible in MRI)

      Actively you could start an IBD diet, the absolute no grain diet (as mentioned in pm), it is kind of hard (for us at least since we are so used to rice, pasta and bread) at first, but a few days can be managed and should show, if on the right track quite straight away.

      We had good success with self juicing (since we needed low fiber diet, not all 'high fiber' are just good diets for anyone).

      All the best, hang in there and try to get other nutricious drinks, self juiced or the one mentioned, if you were in Australia, one needs to push extremely! Yet be patient as well, sometimes I know exactly which tests we needed and then they start with the cheap basics again, as if that was cheaper for Medicare or me, at the end it will be much more expensive, dear system!

       

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    • Posted

      I would ask about the capusule test anyway. It is your right to ask for whatever test you think might help diagnose your daughter.  If he refuses, see someone else.  You have been fobbed off enough.
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