Joint pain and frequent uti

[Emilylouise1215]

Hi everyone I'm new here so this is my first post, My daughter is nearly seven, she's been complaining of joint pain for months now, normally in feet and wrists. Worse first thing in the morning, she also is having frequent urine infections every 2/3 months. She's had bladder and kidney scans all is seems OK there. Our next consultant app isn't until October.
The joint pain is being dismissed as growing pains.
She is quite a shy anxious girl, and gets tearful easily.
I hate seeing her suffer does anyone have advice for me.

Thanks so much xx

Is she hyper mobile at all?

Joint Pains (also general muscle aches)
Frequent UTI & bladder issues
Anxiety
Any IBS/Gastric trouble?
Dizziness?

Can all be symptoms of Hypermobile Ehlers Danlos, which is a connective tissue disorder due to faulty collagen. Myself & DD have it. I was diagnosed after her. We were also told she had growing pains initially 🙄 if this sounds possible, she'll need a referral to an EDS aware Paediatric Rheumatologist.

My DD also had frequent UTIs at this age, we found daily cranberry juice, especially at the end of the day stopped her UTIs. She's 18 now & has taken high strength capsules since about 10 years & 🤞🤞 she's only had 1 minor UTI since

If you Google "Beighton Score" in Images you'll find a chart to check her against for hypermobile joints

Oh & Google "Golden Milk Recipe" there's a few good videos

It's a turmeric based warm drink that's a lot nicer than it sounds & turmeric with the other ingredients helps pain naturally. This was a godsend when mine was small & it was her favourite bedtime drink for years, it really helped her aches, pains & stomach troubles. She now takes the active ingredient in turmeric in capsules

Thankyou that's really helpful, I will look into it xx

When I saw the title I thought I had written this!! DD nearly 11 and still going through it. UTI not as frequent but joint pain getting worse. After raising it a few times with GP we have now seen a physio who says DD is ‘a bit hyper mobile’. She has been given some exercises to do.

DD also gets a lot of abdominal pain which had been getting worse. We are trying gluten-free which appears to be working and waiting on an NHS blood test to see if it can be identified that way.

She gets rashes as well. I feel it is all connected but GPs not too bothered as she is not acutely unwell.

@HelplessProcrastinator all of that is EDS & your DD has it for sure. The rashes can be the comorbid mast cell activation disease

Your DD needs to be seen by an EDS aware rheumatologist. I suggest you ask on EDSuk who is near to you, otherwise you'll be getting fobbed off for years, as we were

Is it EDS if most of her joints are not hyper mobile? Just her knees and ankles? DH has got so many symptoms but no overall diagnosis apart from arthritis but that is due to joints wearing badly as the joints are too loose.

Have you looked at the Beighton score chart as that can probably answer your question as regards joint numbers affected, though the diagnostic criteria has changed in recent years & other symptoms are given as much weight as the hyper mobile joints

I can't stress enough how much a diagnosis can help, especially in school or college. She'll very likely need extra time for exams etc for example ,