Worried

[Eiram50]

Hi everyone

Hoping everyone is as well as can be this evening.

Some may remember me mentioning, a few weeks ago about 2 of my daughters having an extreme vitamin D deficiency.

My 13 year old has been complaining of fatigue, pain in hands and feet and over the past few weeks, shoulders and knees.

We spoke with the gp about it who was keen to wait and see what may happen once her vit D levels were up. Unfortunately, they haven't gone up and get pains increased, with noticeable inflammation.

I have ankylosing spondylitis as well as rheumatoid disease and the gp has now suggested that she fears my daughter may also have this. She has asked us to come back in to begin blood tests and has made referral to rheumatology team as the children's hospital.

Needless to say I am devastated. My condition has been extremely aggressive and proving difficult to control and the thought of my daughter possibly facing similar, has left me so distressed.

Sorry to go on. Im just sharing as do not want my daughter to pick up in my anxiety and worry and knew that I'd fine compassionate ears here .

Marie

[trish1957]

Very sorry to hear your news. My RA is extremely aggressive the same as you and I know what you go through so I can't imagine how I would feel if this happened to one of my family.

Take care

Trish

[Eiram50 in reply to trish1957]

Thanks trish. X

[Mhairi54]

Marie, I am so sorry to hear that. You must be so worried. As hard as it is, try to take it one step at a time, and not project too far into the future until you know what you are dealing with. Hopefully there will be another reason for the pain she is experiencing. Keep us posted as to how she is. x

[Eiram50]

Thank you mhairi and you're right, it may well be something else.

Thank you for your kind words.

Marie

[Mhairi54 in reply to Eiram50]

I completely understand your concern though Marie. My son, who's 11, went through a period of having really painful knees recently , and on a couple of occasions had to crawl up the stairs. I have self referred him to physio to get checked out, but the pain has now settled. I was worried sick that it could be something rheumatological going on and that I had passed it onto him. He's a very active lad and plays football 4 times a week so just hoping it was a football related injury and nothing else. Of course his appointment has landed on the fortnight that we're away on holiday!

[Eiram50 in reply to Mhairi54]

Glad his pain has settled but to see him needing to crawl up the stairs would've been frightening. I sincerely hope you get to the bottom of it and that physio helps x

[Matalow]

Dear Marie, I'm so sorry to hear about your daughter.

It must be terribly worrying ,my thoughts are with you.

Kind Regards Mike

[Eiram50 in reply to Matalow]

Thanks so much mike.

[ruth_p]

I was diagnosed with JIA at 14. I won't tell you it was a breeze to deal with because you know I would be lying but I got through it with my Mum's support. Now 21 years later and I work full time as a teacher and go to the gym regularly. The medication available now is so much more advanced than then but avoid long term steroids as they were the cause of my major problems. I had cataracts and both my hips replaced because of the damage. The other thing to remember is some children do grow out of JIA and don't suffer with it as adults. X

[Eiram50 in reply to ruth_p]

Hi Ruth

Thanks for sharing your experience. It is really positive to read your post and does give me hope .

Right now, I'm trying to remain positive and just praying she doesn't have the condition.

My experience with it had been awful in so far as I was diagnosed about 3 years ago and the disease was/ is very aggressive. In the first year of diagnosis , I had both hips replaced, both knees replaced and surgery / pins in feet. I'm not waiting to have elbow replacements.

The thought of my daughter, at 13, going through any of that, breaks my heart.

However, I do take comfort from your post. Thank you .

Marie

[Eiram50 in reply to Eiram50]

Now waiting re elbows - sorry, typo

[helixhelix]

I do hope they get to the bottom of your daughter's Vit D problem. A lack of it can cause loads of problems with joint pain and fatigue, so there is a good chance it's unrelated. But I can imagine your worry!

However do hang on to the fact that treatment for these things has dramatically changed in last 10 years, and lots of new things in the pipeline. So your daughter's care (if she needs it) will bear no relation to your history.

[Eiram50 in reply to helixhelix]

Hi HH

You're absolutely correct and it is the vit D deficiency that makes more sense to me in relation to her symptoms. In terms of her treatment for this, it's early days and my hope is that it is all related.

I am choosing to remain positive and absolutely appreciate how far medicine has come over time and if she were diagnosed , would be fortunate in so far as treatment developments and the fact they'd have caught it so quickly .

Just a worry but I acknowledge that the worry feels greater because of my own experience perhaps.

Marie

[Entero]

Dear Eiram50,

I'm really touched by your post. My son was very unwell when he was young and I remember the consultant saying "there's only one thing more heartbreaking than a sick child and that's the mother of that child'. I'm 53 but was only diagnosed with Crohn's disease 11 years ago (very late) and AS and AI only this year. Yet when I look back to my twenties I had "unexplained" painful joints and other indications of systemic disease even then and my Doctor believes the disease has lain dormant for great stretches of time. I know I'm very lucky for this and that you've had a very different experience for which I'm really sorry. Autoimmune diseases are so random and although Im sure you'll be fearing the worst, please, as others have said keep the faith and try to hold the hope that your daughter will be one of the "lucky" ones. Thinking of you x

[Eiram50 in reply to Entero]

Hi entero

Thank you for such kind words.

Stay well

Marie

[Entero in reply to Entero]

Btw, son is now a strapping 22 year old in good health 😊

[Eiram50 in reply to Entero]

Fantastic to hear . That gives me hope!

I'm worried, naturally but remaining positive and hopeful .

More so due to everyone's positive and kind comments.

Thank you all

[JEM95]

It's understandable to worry, it's part of the Mum job description! You are a great mum and you are doing everything right in taking each step at a time.

My son had a horrendous time in his early teens - I watched him walk down the road one day and he looked like an 80 year old arthritic man. I was so worried about him. But, it turned out that he was growing so fast his bones were growing quicker than his tendons which lead to constant aches and pains. He grew out of it and is now a strapping 6'3" lad of 24!

It's good that your daughter is having all the tests she needs and will get the treatment she needs, whatever that is.

I had a vitamin D deficiency last year and it is amazing how much better I feel as a result of an increase in my levels.

I will keep my fingers crossed for you and your daughter (figuratively as I can't manage it in reality any more!).

Big hugs to you xx

[Eiram50 in reply to JEM95]

Thank you so much, jem and great news re your son.

Strangely, my other daughter had exactly the same thing. Took a massive growth spurt which left her struggling for a while.

Unfortunately , I don't see this with this daughter.

Marie

[EmmaS-NRAS NRAS]

Dear Marie,

Sorry to hear about your daughter. Hopefully the consultant at the children's hospital can shed more light on what's going on. If it should turn out to be a form of JIA (Juvenile Idiopathic Arthritis) we have lots of information on our website jia.org.uk, on the HU JIA page (healthunlocked.com/jia) and through our Helpline. Do give us a ring if you have any concerns at all before the appointment.

Best wishes

Emma-NRAS

[Eiram50 in reply to EmmaS-NRAS]

That very kind and helpful Emma. I will gave a look at the web site.

Thank you

Marie