10 year old adominal pain

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My daughter has suffered from abdominal pain since July 25th, well that's the day it got really bad....

Her pain stays in the low sternum area and below the belly button above her pubic area and has always stayed there!

My daughter has been through the gammon of test.

She's had an ultrasounds of her appendix, pancreas, liver, gallbladder.

At one point her Bilirubin (liver blood functions) was a concern but has since returned to normal.

She saw a GI specialist who did an endoscopy who removed a polyp and took several biopsies to check for Celiacs disease, Sucrose allergy and Dairy allergy. The polyp turned out to be skin and the Celiacs came back negative also the sucrose came back negative but the Milk (dairy) came back with a slight intolerance.  

So now she is on a   No dairy

                                  Low fat

                                  Low sugar ( no aspertaine)

                                  whole grains (non-GMO)

                                  No soda

We have switched pediatricians. The new pediatrician has taken my daughter of the reflux meds that the GI specialist put her on due to the fact she doesn't have reflux.

We keep a food journal.

She has a probiotic every morning and 10mg Bentyl 2 times a day.

She drinks 4-30oz's of water a day.

 We use the pain level  1 to 10 (as they do in the hospital) her  pain today has been a 7-8 but at the worst its been an 10 (not today) at the lowest it ever is is a 2-3.

She has also started going to a chiropractor and started wearing a amber necklace.

We also have an appointment with a hematologist on the 22nd.

We have an appointment for a HIDA scan on the 26th

My husband and I are at a lost to what is going on... She is NOT making this up and it is not FAPS or chronic abdominal pain!!!!

School started last Tuesday and she went but only made it until 10:30am when the pain was out of control.

She was able to make it all day Friday but she was in a lot of pain when she got in the car at pick up.

This past weekend went okay, the highest pain level was a 7. Last evening around 5pm the pain returned. I had given my daughter eggs to eat which I realize now the yoke has fat in it. Also she had some Latose free ice cream which is dairy and fat. I messed up.

TODAY has been bad!!!

She has had to take her percocet and tordal (10mg).

My daughter does not take acetaminophen anymore and yes I'm aware that percocet has acetaminophen in it but her doctor says we need to keep her comfortable when possible.

Help...what am I missing and who and where should I look for help?

 

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10 Replies

  • Posted

    Has your daughter had a stool test for h pylori, parasites, and fecal calprotectin which checks for IBD such as Crohns or Colitis?  You could ask for a Bowel scan.  

    Has her pain ever moved about to different areas of her stomach and has she had changes in bowel habit, incomplete evacuation or pain that improves with a bowel movement? Does she experience anxiety, stress at school? If she has had these symptoms, it could be IBS. If all tests are negative Irritable Bowel can be diagnosed.

    Perhaps you need to change your doctor and consultant.  I had to see eight before IBS was diagnosed.  I would also avoid chiropractors because it is an unproven science and could make her pain much worse.  It is a very rough, gruelling treatment.  It left me with permanent pain, more than I went in with and led to IBS.

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    • Posted

      She has been tested for all of them h pylori etc all negative. She has no problem with her GI track.. Forgot to mention that she had an upper GI study as well. It was perfect with nothing to worry about.

      She does not have stress or worries at school or about school other than she wants to be there with her friends and not at home feeling awful. Her pain stays in the same place except for when it's really bad it shoots to her back. It is not IBS or Crohn's or Colitis.

      We have switched doctors. This one is the best and I feel this doctor is trying.

      We got the HIDA scan moved to this week so I'm praying this will be what is wrong and it will be able to be fixed.

      Thank you but I feel that her issue is not bowl related. More liver, pancreas, or gallbladder.

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    • Posted

      She has been tested for all of them h pylori etc all negative. She has no problem with her GI track.. Forgot to mention that she had an upper GI study as well. It was perfect with nothing to worry about.

      She does not have stress or worries at school or about school other than she wants to be there with her friends and not at home feeling awful. Her pain stays in the same place except for when it's really bad it shoots to her back. It is not IBS or Crohn's or Colitis.

      We have switched doctors. This one is the best and I feel this doctor is trying.

      We got the HIDA scan moved to this week so I'm praying this will be what is wrong and it will be able to be fixed.

      Thank you but I feel that her issue is not bowl related. More liver, pancreas, or gallbladder.

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  • Posted

    I can only say,

    that I feel with you since my 14 yr old daughter is out of school for 7 months due to continuous pelvic/lower abdominal pain and constant nausea, occasional fever, but pain never better than 6.5/10 and usually around 7.5. Last nights 8/10 which is impossible to sleep with.

    (when docs ask as to why she doesn't sleep, she is almost going for their jagular, me too). 

    Her highest pain she scored 9/10 when she was unable to get up, crying, rolled up in a ball in pain on the floor.

    (She keeps the 10/10 if a limb was cut off alive, she says.)

    Unfortunately it's a huge field when it comes to abdominal pain in different areas.

    You have some clue with the bilirubin level

    (was the total bilirubin level seperated into conjugated/non conjugated bilirubin as this gives a clue to cause of it)

    to at least check very well for liver and gallbladder and bile duct first and please yes do so.

    HIDA is good to do and doesn't hurt.

    Many functional problems cannot be picked up in CT, MRI or ultrasounds.

    Often those come back normal and it is so frustrating.

    There are more invasive (internal endoscopic dye and ultrasound) bile duct related tests, but one hopes you don't have to go down that path.

    We are at a point, where we would consider ourselves happy, if a tumor or mass was found to explain pain and go to surgery and treatment to fix it.

    Really. Others freak out, we would be happy to have something to put a finger on it.

    Is the 'milk intolerance' due to lactose (the sugar in it, that many can only digest to a certain level since we are not babies anymore, the enzyme 'lactase' does decrease)

    or

    due to a real allergy to a milk protein?

    (was it a biopsy or breath test or blood test or skin test?)

    If your girl was lactose intolerant, then a lactose free ice cream is no problem since 'lactase' is added into ice cream to make it lactose free.

    In general we were told to stay away from household sugar or milk, but after weeks of doing so and not getting anywhere,

    she happily has a scoop or those milk-free icypoles (or I make some like purree berries, sugar, lemon and freeze) since some 'joy' is worth it.

    Really, after FODMAP, low histamine, exclusion, emesis diet to no avail, we are back to normal diet whatever we feel like and it's not a bad diet anyway, but not perfect and so called healthy only.

    But nothing goes worse since it always has been bad.

    My daughter has no food intolerances (to any sugar) or allergies (to any proteins). (did breath tests and trials).

    If your daughter showed up positive in any intolerance/allergy test, 

    yes, of course stay away from it and do a good internet search and label reading, because often those things are added where you least expect them to be in.

    At the start 'mistakes' are normal, don't beat yourself up.

    It's really hard nowadays, an e.g. yoghurt has things in it one would never think would be in it. 

    One has to get used to think about those ingredients, that you did not have to think about before and read every little fine printed label or make from scratch to know, what is in it. It's a not that easy as said.

    Pain is hugely frustrating and energy draining, for them, for you.

    Children shouldn't have this pain and yes,

    after months like we now and a slow process of an image here and a blood test there and nothing really found (than prolapsed intestine, hyperflexible ligaments), we are almost dismissed now even I just know, so much is still possible before being put in the 'biophysiological' draw (nerve pain, phantom pain, wrong brain wiring, somatisation of psychological problems....I am sick of hearing that)

    Our first gastroenterologist even said (without gastro-colonoscopy!), that it was a post viral functional problem most likely (she has gastroparesis, calprotectin in stool negative) and should just 'go with it' for 6-12 months. That was actually thanks to our pediatrician who called that gastroenterologist and said from the start, that any investigation would prompt a child to be sick, have traumas due to investigation and get sicker....???

    I don't think so, there are a few things you simply need to exclude before going down the 'psycho' path.

    The traumas are more not being taken seriously, going to ER and getting blood taken, drip laid and then dismissed again and again and this is avoidable blood taking and waiting, THIS is what causes trauma, not the other way round. our test that we had after 5 months could have been done within 5 days....honestly. Our gastroenterologist even said at the start, if xyz did not show a result, if we would be ok to be hospitalised and have a multidisciplinary approach. Of course we would, mind you, my girl is 14, she understands very well and then, after the phonecall of that pediatrician, he said, nope, she seems to walk a little bit better, no need to hospitalise, just wait a year....

    ..

    TA! So the whole wheel started from the beginning with a new gastroenterologist (who did of course gastro-and colonoscopy with only chronic gastritis and bile reflux outcome) and unfortunately a different hospital we had to go to, which had not same reputation, but not on the refer list of that gastro. Halfheated investigation I call that.

    Having said though, those routine biopsies are not checked for autoimmune diseases and usually too shallow to assess muscle or nerves in it. (they are taken for enzyme tests like lactase, maltase, fructase, sucrase and celiac and H.pylori, or inflammation signs, whatever the histology lab performs, but not specifically for autoimmune testing with certain muscle or nerve antibodies)

    (I hope you have printed test results of all the investigations to see WHAT exacly was tested each time)

    So whatever we had done so far, is all half heartedly in our case and have still possibilities open.

    Please keep a good track what exactly was looked at in which investigation since there often is still room left for something else.

    We had a laparoscopy even (finally at 4th time at ER and pressure by new gastroenterologist), but no gynaecological consultant and no cul-de-sac was checked for atypical endometriosis or biopsies taken. How dare they, a lap should be complete since invasive. They took the appendix (which I wanted since pain is there, too), divided adhesions, sucked away the free liquid (and did no measurement as to how much or microscopical or microbiological investigations), saw a big blood filled cyst and decided that to be the reason, closed her.

    Nope, cyst wasn't there at start and is now gone, but symptoms are same.

    (since she has ovulation and menstruation pain, decreasing red blood count and ferritin low, on top of 24/7 pain, we put her on the pill non-stop and this additional concern every 2 weeks is at least gone)

    What I try to say is, that even something was looked at, it still leaves room for having something overlooked.

    Hang in there.

    I had to give up my little work, the first few weeks were horrendous, at a point unfortunately this situation becomes sad routine and I loose track of time. Also I am tired, everytime she says 'mum, my belly hurts so much' I am almost getting angry, angry at the system that we sit at home waiting to get better, angry that I can't help and I can't hear it anymore. I know she has pain. And I am helpless. 

    We are now trying neuropathic pain path (medications amitriptyline, pregabaline, melatonin for nights) incl a team of physio (since she hardly can walk in pain and now loosing muscles) and phsychologist (which ...well, my daughter is not convinced of being told how to live with pain. If pain was moderate, yes, it was possible, if pain was severe like in labour...how dare anyone tell you, to distract from pain, to not give in and stop doing what you were doing. It depends on severety, guys!)

    We have not had percocet and tordal, have to look this up what that is.

    We had only success with 'endone' (narcotic), but of course this cannot be taken often or long term.

    I wish you all the best!

    Saying just, that I feel for you since we are in a similar boat with a young beautiful teenager, who has never ever done anything wrong, always stood up for the bullied mates and so caring to animals and environment, polite...and now is hit with the worst and has no life anymore.

    I hope hope for you, that this passes quickly!!!

    All the best!

    Wishing you much strength!

    Yes, Gastroenterologist and check the liver/gallbladder/pancreas area first, it seems.

    Were her lipase, amylase, liver enzymes all normal, too. Any infection tests done?

    ?

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  • Posted

    PS:

    just some ideas just to read through if would fit (doubt it, but don't want to leave unmentioned)

    - certain porphyrias cause only abdominal pain (easy test in urine)

    - abdominal migraine (we were medication trialed twice, but didn't help)

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    • Posted

      Hi Sanya, your daughter is 14, puberty time, often when one of the acute porphyria's kicks in.  I'd have the gastro guy refer your daughter to a Porphyria clinic at whatever training hospital has one and have her tested by them.  It is not an easy test to get right.

      The tests for Porphyria have strict protocols for collection, transport and testing and can't be done in just any lab.  If not done properly false result can have doc's saying it isn't Porphyria and not consider it a possibility.  I know of many who've been dismissed after such a result.

      Best to go through a teaching hospital with a Porphyria clinic.  They'll have trained up the lab to be able to do the tests properly.  Usually there's one main teaching hospital which does have a Porphyria team, find it. 

      I was diagnosed way back in 1961 as a 10 year old (rare for such a young child to have active Porphyria, mine was triggered by a drug).  I'm 65 now so know a bit about it and have known hundreds of Porph's via the internet.  We are all different but have symptoms in common.

      It can be triggered by menstrual cycle at puberty when it usually appears (males too at puberty), it can be triggered by certain medications, chemicals that are in just about everything especially new items until degassed, petrol, household cleaning products, perfumes.  It can also be triggered by stress, by fasting, by dehydration, by too much exertion, infections of any kind, and some foods. Alcohol is a huge trigger which shouldn't figure here but even wine in church should be avoided.

      In the meantime, as much as your daughter may protest, try to keep her active (a trip to the zoo, like that, not jogging around the block or playing basketball which is too exhausting for her) even when her legs feel weak and painful, somehow it helps afterwards.  The abdominal pain is easily 9-10 at times, never doubt it, I've read articles that say it's the most painful disease known and believe it given my own experiences.

      Little meals often, whatever she fancies but high in carbohydrates when she's sick, carb loading can help.  If you measure her blood sugar (acutally do it's a good idea) when it drops give her glucose and take her to the ER for glucose and pain management.  Best if your GP is open to the idea of Porphyria and he sets up some standard orders for the ER.  Have him order glucose IV 5% and morphine for the pain.  The only type of analgesic which works for us are opiates. Testing for Porphyria once glucose has been started is useless, it won't work so don't waste your time, and money.

       ER staff will go on about addiction but believe me we don't get addicted when given at times of high pain.  We require a lot of morphine and doc's who specialise in Porphyria know that and write up a lot, ER staff not educated in the disease will always grumble about amount but don't listen, insist they do as the orders say.  The morphine stops when the attack stops.  Don't buy into the addiction stories.

      BTW I've had a lot of morphine throughout my life and I've never experienced the so called 'high' everyone goes on about, when in pain you don't get that.  It actually has never done much for my pain either but when the pain hits you'll sell your soul for some relief and I always pray it will work.

      One interesting thing, when asleep the pain stops, getting to sleep when in pain is another story.  As a child I would be sedated in hospital, they don't do that now and I wonder why. Usually it's glucose and pain management (and management of any complications that arise), then haem arginate (Aust/Canada and Europe) or Panhematin (USA).  Attacks can be stopped usually, it can take 3-4 days.

      I've actually gone on and on here which I didn't intend to do, I apologise for that, but really when I read all your daughter has endured I couldn't help it.  I do hope all is resolved and would like to hear what happens.  Regards Reef

      I'm trying to think what you can do until you are seen by someone who can eliminate Porphyria.  It's mostly common sense (for me anyway).  School can be a problem, so many triggers.  Flourescent lighting can trigger some so schools, shopping malls can be a problem as can hardware stores with so many chemicals everywhere.

      If you have new curtains, carpets, just painted the house, a new mattress, move your daughter away, the chemicals will trigger her.

       

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    • Posted

      Go on more please.

      We had a porphyria urine screen, bringing a morning urine sample wrapped in aluminium foil to avoid sun/uv contact. They said, that was all that was needed. We are 1 hour away from the one and only porphyria testing center in our whole state. The sample gets frozen there as the test is only run once, ONCE a month.

      When I got the report I was startled about the 'porphobilinogen' and a star result without comment. My GP called as I asked if that meant not tested yet or below limit.

      It acutally meant, the SCREENING test was negative, hence the quantitative testing not done.

      The problem: which screening test?

      I contacted the doc myself, he did not reply. I know the 'urobilinogen' test field on urine screen dip sticks does react (ehrlich reaction), but it is not reliable for porphobilinogen, hence not called porphobilinogen screen. Duh.

      All the other pre and post porphyria chemicals were quantitatively tested and normal.

      I took one urine sample and had it under UV lamp to see if it was turning purple. It was not. I know this is not always the case.

      So you get my heard now pumping, if her urine test came back false negative.

      I wonder what to do, since....there is only one doc, one lab in the whole state (a state of Australia where I am), that does porphyria.

      I could ask if we could drive up and avoid a car transport hours mistake.

      We have one problem with morphine: she has ascending colon constipation easily. Morphine makes it even worse it seems?

      (Used Endone occasionally. It does not work fully for pain, but at least a bit)

      May I kindly ask if you know a reputable lab? (feel free to pm me since this is open www).

      May I kindly ask, if the medication like haem arginate stopped attacks also preventatively for you?

      The 'glucose' thingy I don't quite get. She had a glucose test at ER post-prandial, and was normal.

      We were not told to do any diet for the urine sample, just spontaneous urine wrapped in aluminium foil brought as quickly to collection center.

      Which urine is the best to produce for test?

      ??

      Ta so much!

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    • Posted

      PS: She eats mainly carbs by accident/liking and easy digestion (and my plea against dead animal products) anyway. I sent a hair sample away (to see heavy metal content) and it came back with (no heavy metals), but the remark, that she should have more proteins since mainly carb eating. ;-) haha
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  • Posted

    Hi CLS1979, I just wanted to say that my post was intended for you too. 

    I focused on Acute Porphyria because it was mentioned in one response and felt it should be considered and hopefully eliminated.  I was diagnosed at age 10, unusual for one so young but it happens when a trigger is introduced to someone with the faulty enzyme.

    Some will say it's too rare to be considered but really when all else has been tested for it's time to look at the rare and unusual diseases.  It might be something else but it's worthwhile checking it out.

    There's a test you can do at home which isn't scientific however even doctor's do it, it's called the 'window sill' test. 

    Have your daughter give you a urine sample in a clear container and put it somewhere where it gets the sun or light.  Leave it there for 24 hours and see if it changes colour.  For me when my porphyria is active I can pass clear urine (like water sometimes) but it changes colour pretty quickly, it goes a dark reddish brown. It isn't conclusive but if it changes colour take a photo to show your doc's, it usually gets their interest.  Try it whenever your daughter complains of pain.

    Foods in the brassica family (cabbage etc look it up) can be a problem for us as can coriander (cilantro).  Anything metabolised by the P450 pathway can be a problem actually including drugs which we need to avoid.

    Less is more for us, the least interference, the least number of medications, and very important, the less stress the better, adrenalin is not our friend.  Good luck

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