Diagnosis and school

Noo99

Hello everyone

My daughter aged 14 has finally been seen at rheumatology and we are awaiting a diagnosis but she definitely has hypermobility syndrome and they believe she has some form of arthritis too. Had MRI scan and blood tests. Awaiting results and another appointment! No meds yet despite excruciating pain in wrists fingers knees and ankles. Painkillers not effective and ibuprofen caused gastritis.

Not sure what I want from the forum but am just a bit shell shocked by it all. It's taken 2 yrs to get her referred but the diagnosis process seems so slow too. I've contacted her school and they've gone into overdrive! She's now classed as a health and safety risk due to her walking more slowly and difficulty going up and down stairs. She's an A* student! There are many days when she can't write so they are giving her a laptop but not sure whether this will be sufficient.

Just wondered how others coped with teenagers being diagnosed, school etc. Also what has helped with the pains. Knees and ankles can be rested but hands are difficult. She puts hot water bottles on her hands which helps a little. What do others think about hot wax baths?

Thanks so much. I know I'll have loads more questions!

dreamdaisy

Hello Noo99, it's nice to meet you but I am so, so sorry that you've had to seek us out. Your poor girl - and poor you too, this is a very difficult time for you both. I'm not a parent so cannot help on the school front etc but one of the roles of the forum is to offer support and encouragement - and it's also a very good place to sound off every now and again!

I know that some on here swear by their hot wax treatments, I find that if my fingers are misbehaving I soak them in a bowl of hot water and gently flex my fingers to get them moving, but for my knees it's ice that does the trick. As for the time it's taken towards getting a diagnosis, well, it took me a good few years: an inflammatory arthritis can be very tricky to 'label' but no matter what the tag the treatments stay the same. Painkillers is a mis-nomer, all they ever do is take off the sharper edges thus dulling matters - the stronger the duller the more of an edge it removes but that can come at a cost with feeling 'foggy'. She needs her sharp brain for her studies and of course her age will be a factor with the pain relief she can take.

Regarding the school's response in seeing her as a H & S risk, well, it pains me to say it but it makes sense. I'm on crutches and now use a rollator for getting around outdoors and yes, I too am one of those. It's an odd feeling. :?

I hope a parent will soon pop in and see your post and give you the help you need, keep looking in and keep talking to us, we know how difficult things can be not only for the one with the arthritis but for those around them too. Take care and I wish you both well. DD

Noo99

Thanks so much for your reply.

stickywicket

Hello Noo99 and welcome from me, too. I can only endorse all that DD has said. She is spot on, as usual.

I was diagnosed with RA (Stills Disease actually) at 15 so I can empathise with your daughter’s situation. I started in my fingers, and soon ankles, and school was difficult but that was over 50 years ago and they deal with these things so much better now. I remember my close friends being wonderful – letting me lean on them for support as I walked through the town. I taught myself to write left handed for rough work as it gave my right hand a rest. Now, there are thick pens which are much easier to hold. Also you can buy Voice Activated software though I believe it does require some practice.

Frankly, in my younger days, I’d have quite liked to be classed as a H&S risk as I frequently used to get bundled down stairs faster than my joints could cope with. It was quite scary.

I’ve had wax treatment from time to time. I always found it very soothing but not long-lasting in its effects. In your situation I’d be asking for some proper orthotic wrist splints for your daughter. (You can buy ordinary splints from pharmacies and disability shops but she’d be better with custom-made ones.) They should be used with respect ie not all the time as that would encourage muscle wastage and strong muscles protect against damage but they do help with the pain.

Please ask as many questions as you like. I’m sure your head must be spinning at this stage. Unless you want to know something that is specific to children, I’d suggest you post your threads on the Living With Arthritis forum. Our parents are often very busy (as you can imagine) and not here as often as us older ones.

There is life after diagnosis though. I’m now a 66 yr old grandmother. Various bits of me have been replaced but I’m still enjoying life very much.

pollyj

Hello,
My son was diagnosed with arthritis at the age of 15 and it felt like my world had fallen apart. He couldn't walk properly or starighten his arms and had pain in his fingers. He was treated by an amazing rheumatologist who still looks after him now. My gorgeous boy is now 22 and I am constantly amazed by his courage and resiliance. He still has some problems at times but has taken it all in his stride and deals wih the setbacks; which have never been as bad as at the beginning. As far as his education went, he managed to be awarded for the highest boys GCSE grades of his year. He went on to university and got a law degree. He now works in the city. I do hope this helps you to realise that our children are incredible and will not let this horrible illness set them back. I wish you and your baby the very best.
Polly x

Chelle123

Hi, so sorry that your daughter is suffering so much. I have a 14 year old son who was diagnosed with systemic JIA in may. He became ill suddenly but thankfully we had a diagnosis within 6 weeks. I think being hospitalised helped because he was too poorly to be at home.

Although it was devastating receiving the diagnosis it did help us to cope because we were able to understand more about his condition.

My son also had swollen wrist and finger joints which made writing difficult. He finds the 'Dragon' naturally speaking software really useful. It does take a little training but it is basically reading to the software through a headset so it learns to recognise your voice. He doesn't us this at school because of the disruption to other pupils. However, it is so useful for homework and projects, surfing the internet ect and will give your daughter the chance to rest her wrists while at home. I think it costs about £80.

On the plus side 4 months down the line my son is doing exceptionally well. He refuses to let arthritis take over his life and has the attitude of 'I rule this condition'.

Hopefully once your daughter has a diagnosis you can move forward with treatment. Also, if she is having trouble with her wrists it is really important to ask for an appointment with an Occupationa Therapist. They can advise on equipment, measure for splints which may help her during the day and also give her hand exercises which strengthen the muscles and keep the joints mobile.

Wishing you all the luck in the world
Chelle

stickywicket

Hijack alert!

Chelle, I’m so pleased things seem to be under control for your lad. He sounds to have a great attitude (Who does he inherit that from? ) which will take him a long way. All power to his elbow, and other bits