10Yro can't eat and constantly feeling sick.

[Upintheairnow]

Hi all. Sorry if this is long.
Just wondering if anyone has experienced similar in their children.
10 yo daughter for over 3 weeks feeling sick and full up constantly. Has 2 bites of food then says she's full. Always got stomach pain (middle tummy, belly button area) it never goes away. Not constipated. No actual sickness. Is exhausted. Has no energy. Always cold. Says she gets "sicky burps" and feels like she's going to throw up after eating. She is allergic to wheat so eats a gluten free diet. She hasn't eaten any wheat. Some days she drinks loads but is still pale and has dry lips.

She is petite anyway (1m 30) and weighs about 29kg. Her clothes are getting loose.
Saw GP last week who promptly said gastroenteritis and prescribed omeprazole. It isn't gastroenteritis.The Omeprazole hasn't helped. Neither has Gaviscon. Dr said to bring her back in 4 weeks if she isnt better! She's barely eating!
She is so sad, tired and down all the time. We submitted a stool and urine sample on Thursday but I have no idea how long results take.

Not sure if this is related but at the beginning of Dec she started getting breathless and feeling like her throat was closing up if she exercised or ran around. Saw a Dr who said she has a "wheeze" but not asthma or anything. Now she can barely walk upstairs without needing a rest. She's struggling to get up in the mornings.

I've just tried calling 111 and was on hold but couldn't get through.

Had a video consultation with a private GP who suggested Abdominal migraine? And also said she would be asking for a blood test for thyroid function etc. And a urine dip for diabetes.

If anyone has experienced similar I'd be grateful for any ideas or advice as I'm not sure what to do. We are getting through a lot of Calpol but I think she needs to be seen and maybe her abdomen be scanned, could it be a blockage of some sort? I'm going to keep trying 111.

Hi @Upintheairnowany news? Have you asked them for an ultrasound to rule out gallstones?

Hi, we are still waiting for the other stool sample results, the H Pylori one. I've phoned the Doctors 3 times now and they've said the results can take 10 to 14 days. So I'll phone again on Monday.

I do want my daughter to be seen again and when the other results come back I'm going to request an appointment sooner than 24th Feb which is when they said they wanted to see her again if she was still feeling ill (after her 1st appointment at the beginning of January!) I'll also push for scans etc too. I'm thinking of changing doctors too as they don't seem to be taking it very seriously.

My daughter is still feeling sick and full all the time and not eating much. She's also still really tired so nothing has changed.

Your DD and my DD are having similar symptoms, and we’ve now been referred for an ultrasound for suspected gallstones. It was playing on my mind to tell you just in case it helps if these tests you’re waiting on the results of don’t come up with anything. It’s horrible seeing them suffer isn’t it.

My daughter had very similar symptoms about that age. Long story short, she has Gastroparesis, GERD and a hiatus hernia. She had most tests and investigations to rule out h.pylori, IBD etc.
She also was prescribed Omeprazole then Esomeprazole but neither helps.
Sadly none of this has been quick, we went to the doctor in 2021 and over 4 years later she is still being tested for more things, such as POTS and MALS.
She is tall and about 45kg at the moment which means she is very underweight.
I also have GERD and a hiatus hernia and when the reflux gets bad it can feel like my throat's closing.

did these conditions get triggered out of the blue or she was born with them ?

We saw a new consultant last week and I asked the same question as shes always had issues with constipation and had to have thickened milk as a baby. They said that not usually, it can be caused by an infection which can cause damage to the vagus nerve, but in 95% of cases they won't work out the reason for having gastroparesis (idiopathic). He mentioned COVID being a potential cause but she had symptoms before 2020.

If Covid can cause these conditions we are all doomed. I wonder what makes some people more prone to it ! My kid developed regurgitation of food. I guess it’s like gerd and gastropresis because his stomach doesn’t empty. He has history of impaction and constipation same as ur child and many hospital admissions due to facal impaction but luckily the regurgitation improved but still happens occasionally. Not sure why happens with every bug !

Quick update- My daughter couldn't get out of bed yesterday to go to school as she was so exhausted. We do nothing at weekends as she has no energy. So she stayed home and I contacted the doctors again who then phoned me and asked to see her in the afternoon. She was very upset about this saying she was too tired to go.
My daughter has 100% attendance normally so it is very unusual for her to miss any school.

We were at the Dr's for ages. Much nicer more sympathetic than the first one but after listening to her stomach and prodding her etc she still didnt suggest anything new apart from to go dairy free for 3 weeks until her next appointment on 24th Feb! She also suggested she might be coeliac but my daughter has been on a gluten free diet for 3 years now, so basically living as if she is coeliac ...! So that makes no sense at all to me. And that to test her for this she would have to eat wheat (that she is allergic to) for 6 weeks!

She said any infections would show up in the bloods and they didn't.
She requested another urine sample and we are still awaiting the H Pylori results which has taken 2 weeks now.

I'm tempted to use a private company to see if they can get results quicker.

But this morning she again can't get out of bed. Not through sleepiness but just exhausted constantly. She says eating things like watermelon and cucumber are easier and don't make her stomach hurt as much, although it still hurts all the time.
I just don't know what to do. Im so worried about her. Shes so exhausted and miserable. Shes emotional too.
She can't keep not going to school but now we have to try dairy free too which limits even more what she can or can't eat. I want her to have an ultrasound or something but the doctors don't seem keen on actually actioning anything. Plus we need these other stool sample results.

I've got to go to work but thank you to all who have commented.

You’re right to push for an ultrasound. Why won’t they do one? If you could get one done privately that would be faster probably.

Please see if you can get a referral to a paediatric gastroenterologist, not just a general paediatrician. If you can pay for the first appointment I would do this, make a note of all her symptoms and a note of her weight before this started and now. Take the results of any recent tests with you as sometimes they can’t access them. They may run some tests and hopefully find out what’s going on.

Why has she been gluten free for 3yrs?

You can consume gluten without having wheat. You'd need six weeks of gluten at two meals a day.

She is intolerant to wheat (we had private testing done via skin prick testing 3 years ago as she was getting hives/itchy skin so we knew she was allergic or intolerant to something, but we weren't sure what. She had previously had blood testing done through the NHS for allergies to egg/dairy/nuts etc which were negative) so she has been wheat free/gluten free for 3 years now with no issues and her skin and rashes really cleared up.

I totally second this. You are in the same position as I was with my daughter when the gp just wouldn’t have it that something was wrong with my daughter. She too was exhausted all the time and couldn’t even get off the sofa.
some GP’s have no idea about gut symptoms and they think they can just feel the stomach and that is going to give them answers. All exactly the same with my daughter.
I honestly think something is going on with your daughters gut and I really wouldn’t be surprised if it is IBD.
If you can afford to pay to see a gastro team then I really think you should.

Wishing you all the very best for some answers.

i realised kids with allergies always suffer with gut stomach issues so sad but y have to always put in mind it could be just post infectious IBS WHich can cause debilitating symptoms. U can read about people stories in Reddit with post infectious IBS which are heartbreaking and worse than our kids

This honestly sounds like an ED.

Id take her to a&e as she needs all the tests again and is going to need to be tube fed if she’s refusing to eat.

Anorexia is very insidious and your dd may not even know why she’s refusing food. Feeling sick after eating when you’ve not eaten much is normal.

Whst happens if you put food in front of her and insists she eats it?

She's not refusing to eat. She wants to eat and she does eat but it hurts her stomach and she feels sick and full up all the time. She says that things like watermelon and scrambled egg hurt her stomach less but they still hurt. So she's eating small portions at a time but not much as she always feels full.

This breaks my heart because it brings back memories of my daughter. She always brought her full lunchbox home from school saying she ate a little and was then full. Then at meals time the same one mouthful then felt full and her stomach would hurt.

Really hoping she can get sorted soon.🙏

I would take her to A&E. Sounds like she’s been having barely any calories for a few weeks. She should probably have an ECG.

Same here, brings back horrid memories of my ds doing the same thing. His ended up being coeliacs disease.

Hi OP,

with you mentioning that she is very flexible, has she ever been seen by a hyper mobility specialist? There’s a condition called Ehlers Danlos which can sometimes cause gastroparesis.

I hope you get some answers soon and that your DD is soon on the mend

https://www.nhs.uk/conditions/gastroparesis/

https://www.nhs.uk/conditions/ehlers-danlos-syndromes/

She needs a test for inflammation. This is a calprotectin test. My son has crohns and his bloods don't always show inflammation , but the calprotectin test does.
Ask for a referral to a paediatric gastro doctor.

I went through over two years of hell with GP's who were very dismissive of my son's symptoms 6 at the time ]. Finally got a referral to a gastro doctor and after a colonoscopy was found to have severe crohns disease.

Some thoughts

• h pylori testing - from your timeline it sounds as though the test was done too soon. High risk of false positives if she had taken omeprazole in the two weeks before the test.
• Have you considered Giardia? It’s very common but rarely mentioned, and I recently read it’s on the rise. Symptoms fit with your daughter’s, a key symptom (though not included in the link below) is early satiety which is what your daughter is describing when she says she’s really hungry then full after a couple of bites. Definitive diagnosis is difficult as relies on stool microscopy, and in the old days it was standard to send six stool samples! Some GPs might treat based on symptoms depending on their knowledge base. The treatment is an antibiotic. I would seriously consider asking the GP about this diagnosis https://www.nhs.uk/conditions/giardiasis/
• What was the faecal calprotectin result?

Maybe glandular fever? The enlarged spleen that goes with that makes you feel like you really can’t eat. But I would assume a doctor would have felt an enlarged spleen.

I agree that going back to the GP over and over won't sort it. Even if you have to borrow £200, make a private appt for your daughter with a paediatric gastroenterologist. I had to do this when the GP fobbed me off for years regarding my daughter's medical issue. They just aren't trained in specialist areas. Once I had the initial appointment, and got the right diagnosis, we were then seen in the appropriate NHS clinic. It will do wonders for your mental state and hers too, just see the right person. Sadly a GP isn't the right person!