What is wrong with my DD? Help!

[mumof23188]

My DD 10 has had ongoing stomach pain for 16 months now. It started as an intermittent pain happening every 6-8 weeks but fast forward to now it’s daily and gets severe on occasions. She has been admitted twice with suspected appendicitis as the pain gets that bad she can’t move. It’s a sharp, burning pain and she says it’s like someone is squeezing her. DD is unable to bend down and has to squat down to pick things up, she’s pale, in pain when eating/drinking and can’t stand for long periods due to the pain. She’s always clutching her stomach. DD has very very loose stools sometimes up to 5 times per day snd at other times explosive diarrhoea. It’s rare for her to have a normal stool these days.

I have been back and forth to GP and I am at the end of my tether now because i can’t do anything to help her. It’s breaking my heart! She’s missed so much school. DD is taking omeprazole and mebeverine both of which do nothing. She has been referred to gastro paediatrician but the wait is up to a year. Im going to call GP tomorrow to get it expedited because how can she carry on like this? Recent blood tests have come back and are classed as normal. Anyone been through similar? Im worried sick!

@Remmy123 so pleased to hear he is fine now, that’s great news. Yes her symptoms are awful for her, it’s really making her feel so down. I just want to ask her if she’s ok and hear her say yes.

Ah do they not? I didn’t realise that. GP has just said they are normal and don’t show anything untoward.

Stool test has been done this afternoon so will drop it off in the morning. It’s been one month since the last one.

Thanks so much for your help by the way.

Your GP sounds awful by the way to leave a child in this much pain is really not on and also waiting a full month between tests isn't good either!

Maybe get second stool test back - get all results printed and head straight to a private clinic as that way you have saved money by having all of the tests for them to view straight away.

We only had to wait a few weeks for an appointment as my son's results after a few stool tests suddenly came back sky high - but he wasnt in any pain, oddly but was pale with dark eyes as became anemic.

It's a really worry but you have to push harder with your crap GP or see another!

Sounds like SIBO (small intestinal bacterial overgrowth). It's quite hard to test for and nhs doctors don't tend to know much if anything about it. It's effectively a gut health issue. Part hereditary part environmental usually.

Dd1, 11 had similar symptoms over a period of about 18 months including either 2 or maybe 3 trips to A&E with suspected appendicitis, one overnight on a drip, ultrasounds etc. We wondered whether it was linked to puberty or stomach migraines or coeliac too.
GP referred to paediatric consultant & we were fortunate to get a community appt cancellation very quickly.
Consultant said she thought it was something called functional abdominal pain.
I was a bit sceptical- because essentially she said couldn't be treated but actually she seems to have grown out of it and hasn't had pain since.
Good luck - keep advocating for your dd op. It's awful when they are in so much pain.

She's young but have they checked for gallstones?

@Remmy123 I agree the GP surgery are awful!! I can’t even tell you how many times I have spoken to them about DD. Oh is it not? How often should they be done?

Yes that’s a good idea. Going to look into private this weekend for sure.

Glad you had a quick turn around for your son. Everyone keeps blaming Covid and I totally get that but at the same time it’s so frustrating.

My DD is also very pale. She looks grey in the face when the pains extreme.

@ringoutthebells never heard of this! I’ll have a google. Thanks for the info.

@Drywhitefruitycidergin yes this is all so similar with my DD, when it all started happening they couldn’t find a cause so just said it’s functional abdominal pain. They didn’t test specifically for any digestive issue then. Roll onto now and the pain is severe and there all the time and she also has toilet issues so I definitely believe there’s something going on.

Glad to hear your DD is now pain free. Absolutely, it is the worst when your child is hurting and nothing that you can do helps.

@123feraverto nobody has mentioned gallstones at all. I’ll have a google! Thanks

My DD was like this. Initially was found to be lactose intolerant then a couple of years later when she was around 10 was diagnosed with IBS and given buscopan. She was also given omeprazole and mebeverine which did very little. Incidentally she was also suffering with anxiety so this may have contributed. Lactose is a nightmare as it is in so many foods that you wouldn't think about like certain flavours of crisps. I would suggest you keep a food diary and ask for a referral to a paediatrician asap. Hope she feels better soon

Histamine intolerance

@Areyoiboredyet how did you find out about the lactose intolerance? Good idea about the food diary. We have started to keep a note of symptoms and how many times she’s gone to the loo. She has been referred but due to Covid it’s up to a year wait and the GP won’t expedite it because her blood work is classed as normal.

DD is barely eating because it causes her pain! This morning she took her tablets with some water and straight away the pain she was in was hard to see. Eating and drinking really exasperates it.

Some people can’t tolerate Omeprazole and find it causes terrible stomach pain and diarrhoea. Although that’s unlikely to be the underlying answer, it may well be exacerbating the problems so maybe worth checking. There is an alternative that is better tolerated I think.

How is she coping in school? The fact this is a daily occurance I am astounded that they are not getting her seen asap

Has she lost weight?

@Anniissa thanks for that. I’ll chat to GP about an alternative because to be honest the omeprazole does nothing anyway.

@Remmy123 not great in school. She has missed a lot of school and her school work is suffering as a consequence. School have been great though, looking after her and giving her heat packs and she’s not participating in PE. She barely makes it outside for break times.

I am too. I’ve called the hospital and discussed her referral a few times now practically begging for an appointment. Spoken to GP more times than I can remember over the last 16 months. I want to scream because nobody is helping her! Whenever we’ve attended GP they just feel her stomach and say no mass etc. GP I spoke to yesterday said that if her calprotectin is still raised they will speak to the gastro department. I’m getting more concerned everyday, she can’t eat anything or drink without it causing pain? Her stomach is also very bloated and tender to touch.

Weight has stayed the same over the last 16 months. No weight gain or weight loss.

She was referred to a paediatrician by our GP sent to hospital for tests for allergies which all came back negative. It was the paediatrician that suggested it could be lactose and advised us to stop giving her milk and other foods containing lactose and she was much better. She loves milk so we've switched to Arla lactose free. The IBS is also a nightmare as we have to watch for trigger foods too.

Just seen your update my DDs stomach was very bloated too. It always came on a short while after breakfast which was usually rice crispies and a glass of milk and that would eventually wear off just after the middle of the day. She said it felt like someone was squeezing her tummy and she's be curled up in a ball, it was heartbreaking to see.

As mentioned I almost sent my son private there are many private clinics and if you send her boood tests and calprotectin test you couid get her a diognoses in next two weeks.

She shouid be steadily gaining and growing, weight shouldn't remain the same at her age.

Poor thing I really do feel for her (and you)

Ask them to check calprotectin levels & test for coeliac. Dd is 8 & been in pain with diarrhoea for months & just been diagnosed with inflammatory bowel disease. If you can rule things out, it will help a lot.

Her gut is so inflamed right now she can't tolerate gluten or lactose, though coeliac test came back negative. Good luck getting to the bottom of it, it's so stressful.

@Remmy123 I wish I could afford to go private. Seems as if it’s 300 for a consultation here. DD is in absolute agony again and off school today. She’s not eaten anything due to the pain and is scared to eat. GP was as useless as ever and said there’s nothing they can do until the latest calprotectin test is back. She’s been prescribed some pain meds to help ease the pain.

@buckeejit ah I’m sorry to hear your DD was suffering, hope she is well now? How did she get diagnosed? My DD had a calprotectin test at the end of Feb and the level was 193 which indicates mild inflammation. We’ve just repeated the test and are awaiting the results.

The slightly increased calprotectin could be a red herring here as slight increases can be caused by taking PPIs (like omeprazole). You would need for her to have a period off the PPIs before getting an accurate calprotectin measurement from a stool sample.

I know this because it happened to my DS!

Of course, if the calprotectin is significantly raised, that needs investigating further.

@mumof23188 your poor DD! Even without the second stool sample results she shouid stil be referred due to be in pain / missing school and not eating!

I thought it only took a couple of days for the results to come back?

And what if the results are normal - he will still have to refer your DD to find out what it is so he is basically wasting time 😡😡

@mumof23188 Push hard for the referral; it's shocking they've taken so long to make it, I'm sorry that they aren't doing more for your DD. Private would be best but it does sound expensive.

Ask the GP if they'd consider a prescription for buscopan appropriate to relieve her pain. I find it incredibly helpful for a range of gastro issues. Even though it wouldn't resolve the cause, helping her to feel a bit better would improve her quality of life.

You can also press for referral to a dietitian. Since she isn't eating much she probably needs her intake to be supervised to make sure she isn't missing key nutrients. She will feel more unwell if she isn't getting enough calories. Is she equally affected by liquids and by solids?

Hi,

This breaks my heart to read your post as this was my daughter in 2017 when she 11 and just started secondary school.

She was suffering with stomach pains mainly within minutes of eating. Emptying her bowels several times a day, her stools were very running, mucasy and very very smelly. She became ver with drawn, fatigued, joint pains. She could not walk very far before she had to sit and rest because her legs ached so much. She had been suffering months of mouth ulcers that wouldn't clear. She had blood test several times which we were told were normal. However sometimes normal to a gp can sometimes be different to professional health doctor in gastro problems. After months of being fobbed off with out Gp I manage to get my daughter an appointment at the dental hospital to have her ulcers checked out. It was at that appointment that crohns disease was suggested. The dental put a refferal forward to the gastro team at our local children's hospital. I will be for ever grateful that they did that.

To cut a very long story short my daughter had blood test and a stool test (calprotectin test) this showed she had immflammation within her gut. She had a colonscopy and a endoscopy and biopsys were done. This confirmed crohns disease.

I am not telling you this to scare you. My daughter get that diagnosis was the best thing for to happen at that time. Fast forward she was out on treatment. Within days of that treatment starting we got our daughter back. Her gut started to heal which made her health so much better. Just over 4 years on my daughter has been thriving. She has put over 4 stone in weight on as another of her symptoms was she had lost a lot of weight as she lost her appetite. She has grown 4 inches, her growth has stopped which is another symptom. She has had a normal active life without any symptom what so ever. This is not a cure but she is in remission as it stands.

I wanted to tell you this because your DD stool test reading is indicating slight immflammation. I am not saying that is crohns disease by all means. One thing we was told by our consultant was that a lot of gp"s are not too clues up on IBD immflammatory bowel disease and therefore misdiagnosise some people with ibs as they are similar symptoms.

This is why you really need to push for the health care professionals to take you seriously. If you feel you are not being listened to at the hospital you can contact Pals who will help you on your journey in trying to get tyour DD seen.

Please feel free to private message me if you want to chat.

Sorry my spelling mistake inflammation, you think I would know the correct spelling by now. I have yet to find the edit key🙆‍♂️

Re the stool test, make sure your DD has a calprotectin test done on a stool sample. This one is not part of the run-of-the-mill stool cultures tests; it's done separately. It shows whether there is inflammation in the bowel.

After this long, I'd want a referral to pediatrics and to have a camera investigation to see what's going on. Some of the symptoms are similar to that of Crohns or ulcerative colitis (which I have). These are conditions which are unpleasant but usually quite treatable.