Chronic Abdominal Pain in 13 Year Old Daughter - Help Please

[Snicket720]

Hi Everyone, I am new to the forum.

I am, quite frankly, at my wits end.

My 13 Year Old Daughter was violently sick in the car in August 2018. Since that point she has had constant stomach pain and nausea.
We have taken her to the doctor, who prescribed various pain killers and the Pill for her periods.
None of this helped. They then thought it could be appendicitis, so we rushed her to hospital....thankfully it wasn't that either.
At Christmas 2018 the pain became so terrible we rushed her to A&E only to be told they couldn't find anything causing it.
Our Consultant seems convinced that she has Chronic Abdominal Pain caused by a sensitive nerves.

Poor darling has had more blood tests that I can think of. She has had two ultra-sound scans and no pain killers even touch the sides. She cries herself to sleep most nights (so do I) and my partner and I are trying to push for an MRI but our consultant is having none of it.

Her tummy swells up and cannot be touched as she is in screaming agony.

Does anyone else's child have this issue? It may be referred to as FAPS or CAPS. If they do, what works?

Any suggestions that might help would be gratefully appreciated.

Currently the only thing we do is Hot Water Bottle / Bath and cuddles, however, these seem to have less and less effect as time goes on.

Thanks for reading :)

Has she been tested for celiac disease or other allergies?

Hi Somethingsosimple. Thank you for replying.

We're off to see a dietitian on 26th April. I am going to mention it to them.
The problem is though that her pain is constant and flares up to chronic level at any given moment. She doesn't even have to eat or drink anything for it to happen.

Thank you though, anything of help is a step forwards :)

What painkillers has she tried?
Are there any triggers? Things that obviously make her pain worse?
Is there anything that eases her pain?

Sorry, lots of questions.

Hello. A few thoughts-

Get her tested for coeliac as PP said
Get her tested for H Pylori (stool test)
Has she done a trial of a PPI medication (e.g. omeprazole), in case it's gastritis?
Are you sure it's not constipation? Has she tried Movicol or similar?
There are other things you could trial to see if they make any difference - probiotic tablets/yoghurt, peppermint capsules (Colpermin)

Good luck.

Hi Everyone,

Thank you for your kind responses.

So, since August my Daughter has tried almost every medication possible. Paracetamol, Ibuprofen prescription painkillers like Codine. She has had medications for IBS which I can't remember what they were. She had two different types.

Alas nothing has even taken the edge off :(

She takes Aloe Peach Juice (really expensive) but does nothing.

She has had blood tests for Celiac. She's done Urine Samples, Stool Samples all coming back negative.

Thank you so much though for the kind advice. Off to buy some probiotic yougurts from the Co Op now.....who knows it might be the key :)

If that doesn't work, maybe try Windeze?

If nothing helps, I would be tempted to press for an MRI for peace of mind. Assuming that is normal and the consultant is sure the pain is nerve/functional, something like CBT might then be worth a try?

Have they talked about seeing a pain management service to help her to find some strategies to support her with pain management?

I feel your pain op as we're experiencing similar with dd who is 12. She's had stomach spasms in her right side of her stomach since 10th January this year. She's not had a pain free day.

Has been in hospital 7 times, the last time being Thursday and they can't find a medical cause so think it might be her pain receptors in her brain have got muddled up. Personally I'm not convinced by this and feel there are still other issues that can be explored. We've got the consultant next week so will see what she thinks.

Dd has been tested for appendicitis, Crohn's, ulcerative colitis, kidney stones and coeliac. She's had paracetamol, ibuprofen and cosine but they don't touch the pain. She's had mebeverine, algerine, buscopan and kolanticon but they haven't worked either. She's showing as having the HLA type for coeliac but her ttg levels were normal. I wouldn't be surprised if she does have it as it runs in my husband's side. Also wondering about lactose intolerance as she's started breaking out in a rash after dairy products.

She's missed a lot of school as she's been in so much pain. She does taekwondo but hasn't been able to train since February - she competes regularly and was meant to be competing internationally next month but that's not happening now. It's made her pretty depressed at times, horrible to see her like this.

Sorry for the essay and rambling, just wanted to let you know you're not alone xx

Forgot to say she's also had numerous blood and urine tests which are clear, sometimes blood in the urine. Also clear stool samples, 2 ultrasounds and a CT scan all clear as well.

This was me at that age. I missed so much school. Had every test available in the 1980's. Was on Zantac and oxazepam for years. Was diagnosed with gastric erosion which I think was a made up diagnosis. Was later diagnosed with depression and ME at about 18.

Looking back I think I had a nervous stomach and later developed IBS

Mesenteric adenitis?

My sister was like this in the 70s. If I remember rightly there wasn't much of a diagnosis but a late idea that there can be gastric migraine in teenage girls. It did stop but I'd also add that she's had digestive and anxiety problems for most of her life.

I'm not imagining it! americanmigrainefoundation.org/resource-library/abdominal-migraine/

I would visit Holland and Barrat of a health food shop and get proper probiotic drops - I wouldn’t bother with the ones in the yogurt to be honest.

If anyone with similar issues that might possibly be diet-related or linked to food intolerance would like to try it, here's the Addenbrookes exclusion diet. It is a list of the foods to cut out and the order in which to reintroduce them.

A couple of questions:

1. When she was initially sick in the car in August, was it because she had a stomach bug? Or was it car sickness? Or something else?

1. Is she worried about vomiting again? Could she have a fear of this happening?

I have some other ideas but will PM you.

Could be anxiety related so consider treating for that.
My DS had similar at the same age - trips to a&e in the middle of the night etc. Nothing physical was ever found and treatment with anti anxiety medication helped

Hey everyone,

Thank you so much for the kind replies. So many new things to try. We are off to see our consultant on 29th where my partner is going to lay down the law, as we haven't been getting anywhere.

I will also speak with her dietitian when we see them on 26th and push them for answers.

I cannot, and will not give up until they find whats wrong with her.

Again, thank you for your kind support. I am so glad I found this forum, gives me hope that I am not alone :)

Could it be endometriosis? Depending where the pain is in her stomach, this can cause bloating, bowel urine problems etc., although It doesn't always show on a scan.

Rare, but totally possible to be found in a older child/adult, intestinal malrotation? She could be experiencing intermittent midgut volvulus. Was there anything unusual when she vomited? Eg was it yellow or green in colour or just normal foodstuff vomit? A CT scan would pick that up, probably a mri also. Can you afford to go private and request an mri?

did it start after she started taking the pill?

I'd be wondering about something gynae-related as well - some medical professionals can be slow to investigate this and womens' pain is often downplayed. As a very young teen with agonising periods I was repeatedly told it was 'normal' and to just go away and deal with it - I was diagnosed with endometriosis many years later. Ultrasound, for example, won't spot endometriosis, only a laparoscopy will do that.

She needs a thorough investigation, it's not acceptable that an MRI has been ruled out. It's not right for her to be left in such constant pain but it's great that you're determined to advocate for her, OP. There is a cause behind this and they need to find it.

Thank you so much everyone for your kind replies.

We're in with the Dietitian tomorrow so, if nothing else, that should give us some direction as to her food and things she eats (or doesn't in her case).
My partner is taking her to the consultant on Monday as I can't go, due to work and, more importantly I would be locked up for strangling the consultant, especially if he says one more time it's in her head lol.

I am now writing everything down for him to ask questions about and will keep you guys posted.

I think just talking about it really helps me personally, just to know we're not alone :)

Thank you again so much for your time in replying.....

Hiya everyone.

So sorry for the long delay in updating this thread.

So, we went to see the Dietitian and she was really nice. She suggested we try out Lactose Free foods. We did that for two weeks with no effect :(

At the end of April we went to see our consultant and, to be honest, even he looked concerned our daughter was in a lot of pain. He has now referred her onto the Endoscopy Department of another hospital. We are still awaiting that appointment...:(
We contacted our Dietitian again and she told us to try Pribiotics? So she has been taking them over the last couple of days.

We did have occasion to phone for an Ambulance the other day. Daughter was on the floor writhing in agony, the 999 call person said that someone would come back to us. After waiting 30 minutes and no call we decided to take her to A&E. They did a wee sample and gave her some paracetamol, useless to be honest.

I think we learned three things....

1. Don't call for an Ambulance unless you have stopped breathing or blood is gushing from part of your body.... as they don't count it as an emergency...okay, I get that.
2. Don't waste time in A&E....they can't do anything about this problem clearly.
3. We are on our own....so keep pestering the Consultant until he gets so annoyed with us he transfers her....

Oh I forgot to mention, we had a phone call from him the other day (three weeks after her appointment) and apart from the word UM...which he used most of the time on the voicemail, we gathered he had spoken with the school, dietitian and finally sent the referral letter.....so kind of him :)

Fed up to be honest, I can't begin to tell you....It's all I can do to not burst into tears here :(

Thank you for your support though :D

That sounds really frustrating.

Has the consultant tried her on low dose amitriptyline (that's usually first line treatment for CFAPS?
Gabapentin?
PPI's - omeprazole/lansoprazole?
Other medications for (stomach) migraine e.g. sumatriptan?
Can you self refer for CBT?

At least if she has an endoscopy, that's a step forward in excluding things.