Looking for advice regarding my 7 year old daughter - Health Concern

[TJDH96]

Looking for advice regarding my 7-year-old daughter.

In March, she suddenly developed severe abdominal pain in the centre of her tummy and on the right side. Our GP suspected appendicitis and sent us to A&E, but blood tests were normal and she was discharged.

We're now in June and the pain is still there every day. She is lethargic, has lost her appetite, struggles to walk or stand for long periods, and often has to be sent home from school because of the pain. She can no longer play with her friends and spends most of her time lying on the sofa. She also gets pain in her right side every time she has a wee, although urine tests have been negative.

So far she has had:

Multiple blood tests (normal)
Urine tests (negative)
Ultrasound showing clustered Peyer's patches
X-ray showing thumbprinting

She's been referred to paediatric gastroenterology, and they've advised an 8-week dairy-free diet, but she has never shown any signs of a milk allergy or intolerance before. When speaking to the diet specialist at the hospital she also agreed its strange for it to be so sudden and how she's affected. She's also got no other symptoms of an intolerance i.e hives, rashes, pain when eating etc.

I feel like we've hit a wall and I'm worried because she is not the same child she was before this started. Has anyone experienced anything similar or have any advice on what questions I should be asking?

My teenage daughter has Gastroparesis so her stomach muscles don't move food into the small intestine, it sits there and ferments causing pain, bloating, weight loss, lethargy and nutritional problems, so similar symptoms to your daughter.
She had had stomach acid tests, so much blood taken, allergy testing, SIBO testing, calprorectin tests, Crohn's tests, two gastroscopies, two colonoscopies... They were all clear.
Then she had a capsule endoscopy, where the capsule contains x and o shapes and you go back after a few days, have an x ray and see how far the shapes go through the digestive system. Hers didn't go far!
She ended up having a Gastric Emptying Study and she has severe gastroparesis. Her BMI is current 12, so very underweight.
Her worst symptoms started at 11, but she's had issues since she was 3.
We've also discovered she had some vascular issues with her celiac artery too.
Alternatively if could be biliary tree related, I have sphincter of oddi dysfunction, narrow bile ducts and chronic pancreatitis and my symptoms are very similar too.
I hope you find some answers for your daughter quickly, best of luck.

I have not heard of Peyers patches or thumbprinting so don't know the relevance of this. But my daughter had similar off and on at a similar age, then it became more acute age 10-11, I had to pick her up from school a couple of times which is very unusual for her. She had blood tests around then which did show high inflammation, we didn't have more investigations but the GP thought it was mesenteric adonitis, and to come back if it doesn't get better in 3-6 months, and she was better by then. I relate it to how I always get a sore throat when I'm very sleep deprived or run down, I get some inflammation in the gland in my throat whereas with mesenteric adonitis some children get that in their tummy. Hopefully it's something not serious like that. What blood tests has she had?

I am really surprised the gastro team have not investigated your daughter’s symptoms. Blood test and stool sample test, unless they have but you forgot to mention it.
The stool sample will measure if there is any inflammation in the gut.
My daughter was referred to a gastro team at our children’s hospital with all the symptoms that your daughter is showing. They first did the blood and stool test which showed inflammation so she then had an endoscopy and colonoscopy which diagnosed Crohn’s disease.
Not saying that is what your daughter has but the symptoms definitely sound like gut issues.

Could it be constipation / impaction?
Hopefully the doctors already considered it.

But agree with pp that she needs colonoscopy and biopsy

Consider constipation. By the time pain starts they have likely been constipated for a few months.

Try the sweetcorn test, go without sweetcorn for a few days. Then eat a load of sweetcorn, you should see all of the sweetcorn close together in the poo within 24 to 48 hours. If the sweetcorn takes longer or it is spread out in the poo, this would indicate constipation. Give plenty of water, lots of fibre.

Consider food intolerance, gluten is common, keep a food diary.

Could it be persistent pain? This can be pain that starts with an injury or illness but stays longer than you expect. It can be related to a traumatic event around the same time - this could be the pain and hospital treatment or something emotional.

If you child has sensory issues, saying they are in pain could be a way of showing distress, they may not have the words to describe their emotions and saying they are in pain gets the support they need.

There is a really good website called Pain Bytes that has videos and work sheets that can help with pain management.

Hope you little one feels better soon.