Daughter's ongoing abdominal pain

If her pain has been diagnosed as functional, has IBS been mentioned?   This is a functional disorder of how the bowel works.  Does her pain shift around and does she have changecof bowel habit?

Does she drink milk. try goats milk or rice milk, (not to bad tasteing), and see if that improves her pain.

Also she may be sensitive to wheat, brother in law at nearly sixty has had belly pain his entire life, my sister has withdrawn wheat products from his diet and he has improved out of site in just a few weeks, worth testing i would think, does not come back cealioc, has been tested a number of times, they eat lots more fruit and veges and eggs, in place of wheat products, and she is learning how to cook gluten free foods, she has said to me a whole new learning experience.

I think also I have become sensitive to wheat products, the more I eat the worse I feel generally, again tested for ceolioc, in the clear, there, have come the conculsion that the wheat we are being fed has somehow changed or the sprays and poisons they use to keep it healthy are not healthy at all, I am not a conspiracy nut, but i sometimes wonder.

Also try reducing her acid and acid stimulating foods, no coffee, no coke, tumeric is a great anti immflamation product, yes you can buy it as medicine, but worth the try with some food you regulary eat, just makes things bright yellow and nutty taste if you don't already use and know that.

Well worth adding to minestrone type soup/stews, and even can add to beef dishes, you don't even notice it.

Also add, an hindu indian lady told me this a bare pinch of chile, i told her NO NO NO, she insisted that it would help me.

I was having alot of acid reflux post a nasty infection and I had been given anti biotics that had really disagreed with my stomach, horrible burning and pain, plucked up the courage and tryed some with my minestrone type dish or vegetable stew that i make especially during the winter, it worked and I still use it during tummy upsets 30 years later.

 

Hi April,

 Where should I start, you hit my sore spot.

I am a mum of a 14yr old severe chronic pain (lower abdominal, right side) girl and I can't tell you how fed up I am with all the premature 'diagnosis' and 'draws' children get put due to 'puberty' age prior solid investigation, that any adult would receive.

Or dear me as a girl you get menstruations and a cyst is found, of course it's that, hormones and cyst. Even if cyst is long gone...... and hm, strange and shoulder shrugging is all you get.....if that explanation disappeared.

Have to say though putting her on the pill was a life saver regarding massive menstruation and ovulation and cyst rupture pain additionally on top of her 24/7 pains, that made her rolled up in a ball on the floor.

But the mid pelvic to right side pain is still there, sometimes with fever. No inflammation markers up, appendix has been taken out, colon adhesions - strange that they existed, again shoulder shrugging - divided. Pain still there.

Since appendectomy though her vomiting is much better (has gastroparesis), but the abdo pain (pelvis, mid to right side, always same spot, never relieved with toilet, hence is not IBS) is persiting.

We had 4 months of putting her onto a lot of 'pain specialist' medication for so called neuropathic pain (Lyrica, Neurontin, Amitryptilin), must see physio and psychologist and other then being a pure pharmacy with dozens of pills at home with a reminder sheet and ticking to keep track and have hubby informed in case I fell over, it only fogged her  brain up, but pain level stayed the same. Amitriptyline though makes her sleepy, we keep that one. But if pain is 8/10 and higher, it doesn't help, only narcotics/Morphin.

My girl's symptoms are most likely due to Ehlers Danlos, a genetic connective tissue disorder, that get's more and more evident, her whole skin is zebra look (down to calves), getting flexible by the day (does the weirdest things with fingers and legs) and most likely set on stronger due to puperty and effects the guts as well since...connective tissue is everywhere.

Her guts are 'fallen down' upon imaging (transverse colon sitting comfi on the uterus, small bowel in pelvis mainly - but of course shoulders are shrugged because 'some have that' and probably causing all the pain, but we don't want to cut out guts just to try and fix pain, not yet.

We had a rheumatologist putting her 'hip pain' (the smaller additional issue, a strong pain, making walking hardly possible, intermittent 1.5 years ago, since resting with abdo pain and having to do physio, permanent hip pain) into the 'growing pain' draw. Growing pain is known to be between 3-11 years when femur head and hip pan grow at different rates, toxic hip pain in puberty is known, that lasts only for 2 weeks, not 1,5 years. ?? All not fitting for a limping 14 year old, who can't walk 20m anymore.

After insiting and showing every doc and physio the abdo x-ray where you can see hip as well and didn't like the thicker look of one femur neck/head, finally got MRI and ultrasound of hip: trochanteric bursitis, hip labras torn and bone marrow edemas.

So much to 'growing pain'.....just to demonstrate the 'easy' explanation with children that age. It's simply not always true!

Same goes therefore for 'abdo pain'.

It is true, that many children 'grow out' miraculously of abdo pain, after about 6 months, hence the reluctance of many GI to go on testing, but some don't grow out, what then.

We had a pediatrician who put her straight on antidepressants (that even the pain specialist was not happy with) without any investigation, without a blood test, without scopes, prior everything. Because....girls that age can get 'hypersensitive', they just need to breath through and see no doctor. Also re hip pain. Duh.

....

Thanks.

I am happy we saw some other docs since the pill as said is a blessing for us for the pain peaks she had and the hip pain not just a teenager thing at all. Her connective tissue is not functioning, that's it. There is no cure, but knowledge is power, never ever will she play a woodwind instrument again or carry a heavy school bag.

If school ever comes into sight again that is.....

Coeliac disease should be standart to be tested for. Has your girl been tested?

Porphyria is maybe you want to look up and see if symptoms would fit.

We went through a few breath tests for H.pylori, fructose, lactulose, lactose. Have you done those?

Calprotectin in stool is a good and complication free screening test for inflammation in the guts (beware so: 8% or 6% or 2%, depends which statistic you read, come back false negative and delay scopes), but if it was positive....good indicator.

We have btw tried very different diets (gluten free, dairy free, FODMAP, high carb-nothing raw for easy digestion, low fiber, low histamine) even under diaetician supervision and absolutely not worth the money we paid. Nothing helped. Kept a food diary, extensive diary for almost a year to no avail.

We tried acupuncture and herbal teas. I see no effect.

I hope you have no genetic underlying 'hardware' issue like we have, it's very rare, but I can so understand the frustration of being given up far too early and docs are not always right with 'psychologic' or 'wrong brain wiring' or 'post viral effect, will go away in 6-12 months'. But of course can be.

I wish for you that her pain goes as it came. Apparently viri can cause an upset gut for a year like a chronic damage. (we are 14 months in, hardly school, life as we knew is gone, so that 'viral damage, functional, will pass, just wait' suggestion by first GI was also rubbish)

As a mum you know best, you know if your daughter, you know what is in real pain or if something could bother her. (first question always: does she get bullied? How is your family life?...duh)

Follow your gut instincts and persist, change doc.

We even tried Low Level Laser Treatment for the hip, one get's desperate, but the pain is very, very real. We will actually continue since it seems to do something for the hip very faintly.

We are put through the obvious culprits first rightfully so, the basic tests, imaging, the problem is just, as soon as these housenumber 5 tests are negative, GPs run out of ideas and specialists need to be really good, to think outside of the box.

It is ok to do the basics first and it is really good, to have usual causes eliminated, but that does not mean something rare was excluded, too.

GPs are not trained for rare diseases and cannot be blamed, you need to do a lot of homework yourself (I read about 2 hours each day, different studies, blogs, treatment trials and errors, about supplements and any relief like oil wrap and so on)

and you started by asking others here. Very good!

With such lists of ideas you can inform yourself about symptoms and how they fitted and go to doc with specific questions or referral suggestions. I needed to see a second rheumatologist since the first one was absolut rubbish, same with GI.

Don't think that the first is the best and allmighty.

They would have not picked up on Ehlers Danlos. GP has never heard of it before....there is another webpage with very rare diseases (inspire) and it is amazing what is around that no one has ever heard of.

If your girl needed acid reducers (PPI, H2blocer or antacid?; 3 different approaches. Make sure for breathtests the PPI is off for 2 weeks, beware: acid rebound comes for sure, so ease out slowly and have H2blockers instead and the occasional antacid), you know too if she had heartburn and sour reflux. One who is low in acid doesn't get sour reflux (my girl did have very sour reflux and vomited up to Mallory Weiss tear - blood in vomit- and also confirmed in endoscopy....we absolutely needed PPI as an acute treatment for half a year and are on H2blockers now going down in dose since vomiting becomes less the issue).

Mum knows best! I wish you all the best and that symptoms get better over time due to her own healing or something can be found and treated or at least explained with.

I do so understand your frustration! Hang in there!

All the best!

 

? I don't know what I mentioned in my book of experience, that it got on the 'watch list', but maybe it comes through.

Coeliac disease tested?

Breath test for H.pylori, Fructose, Lactose, SBIO done?

Caprotectin in stool?

Porphyria?