Ehlers-Danlos Support UK
1,574 members503 posts

Rheumatologist appointment grandaughter

Hi My granddaughter has had her appointment with the rheumatologist, said she has super mobility in her feet ,ankles and hands and has recommended boots for school.

They have prescribed paracetamol and ibuprofen for her to take prio PE at school and also morphine for more severe pain.

You could have knocked me down with a feather, didnt know the pain would get that bad!!!!

She has said she does not like the orthopaedic boots so have said we will look at Kickers or something like. Some sort of support for her arm at school while writing and some sort of supports on pens and pencils ,anyone know what these are and where we might get them?

We have follow up in 5 weeks with rheumatologist and then with paediatrician a few weeks later .

Cannot believe how things have changed for her so quickly.

7 Replies

Hello Elth. I am glad your granddaughter has had what sounds like a successful, helpful appointment.It is half the battle getting the right support and treatment..Pain for anyone is a terrible thing and of course worse when its children..But now that your granddaughter has been diagnosed she will get the care and support she needs..

I can relate to the feet/ ankles and I find foot ware that is really tight, snug fitting to the feet offers support.I wear support bandages, and canvas lace up pumps accommodate them.I got mine from next and they will have a children's section..I am not sure about writing implements but I know W H Smith sell pens that are flat on the part you hold. These are aimed at children learning to write and make easier to hold the pen.They might make it more comfortable for her to use? If you go on the HMSA website you will find lots of information, and if you call their helpline they will be able to offer help and advice.Also, if you ask the consultant or GP about an occupational therapist, they will be able to offer various items that help to make doing things easier,and these might be helpful for your granddaughter.

It is amazing how children seem to get on with things in spite of anything. I think we are the ones to really worry -naturally- and they take it in their stride, but may worry because of others being anxious. In my experience, love support and encouragement is all they need to do well. Your granddaughter is very lucky to have you and a caring family.You are doing a great job🙂 I am sure you will read much information and this will be of great help along the way.

Sincere best wishes to you, your granddaughter and family x

1 like

Has your granddaughter been diagnosed with a Hypermobility, EDS condition? Having re-read your post I was wondering.. In my experiance I've found a lot of general rheumatologists and paediatrician's don't have the extensive knowledge of what a condition like hypermobility brings. For whatever reason, they seem to concentrate just on the joints being hypermobile, but depending on the diagnosis, it can affect other body systems as well as just the joints..It is good to be aware of this when seeing the consultants, and making sure that they are knowledgeable so your granddaughter is getting the full support she needs from them.x

1 like

That sounds like a very useful consultation, and hopefully if there is anything that the rheumatologist has missed then you still have the paediatrician to see.

My son was told by the physio and paed to get orthopaedic boots, but orthotics refused to supply them and told us to just wear walking boots. Walking boots did not work, were not supportive in the right way, and are way too hot and heavy to wear indoors! Tell your daughter to not knock the orthopaedic boots. When after a long battle my son finally got his (it took us 8 years until he was 16 to get them!) he was so relieved as they did actually help his feet to hurt less and were much more comfortable too because they were made for his feet, not Mr Average's feet.

As for writing ask either your GP or the paediatrician for a referral to Occupational Therapy. We have had a lot of help from OTs. They are great problem solvers and can come up with great ideas to support writing and other activities too.

1 like

Hi. Thank you for all the good advice, she has been told she has hyper mobility but they say more is going on! So we are still awaiting a proper diagnosis, reading people's posts this seems to be the biggest thing getting the correct diagnosis and treatment. We will be asking lots of questions the next appointments. We have been spending the last 6 years concentrating on her tummy troubles and this other stuff has just come upon us.

1 like

Hi Elth. It is an advantage to have got a diagnosis early in your grandaughters life so she can get all the help she needs in order to live a fuller life as is possible..

My son is now 20 and has had a very serious ME condition. Thankfully it eased, but he has still had to live with many unexplained symptoms that have caused him pain and illness.Only recently have we become aware of his hypermobility because of an appointment I had for myself, where I explained about my son and was told 'he will defiantly be affected'.He is now going to see a specialist with me next month..He also has very bad bowel problems which prevent him from participating in various things, and the doctors have been unable to treat it successfully. I am hoping that now we know of the Hypermobility condition, he will be able to get the right help and treatment.

You are on top of it with having gained knowledge of the condition, and you will be able to lead the doctors to ensure your grandaughter receives the correct care.

Good luck at the next appointment. I wish you all the very best.xx


Hi Tillyray. Yes I do feel as if we are lucky to have been told about the hypermobilty site because as soon as my daughter and my self looked separately we rang each other up, we couldn't believe how much it was describing some of my granddaughter' symptoms. I understand we have along way to go but hopefully we can start to get some answers or at least some advice as to how we can help her. As you say children are quite resilient. She just gets annoyed when she doesn't have the energy to do the things she wants to. It's like she is a teenager sleeping in until 11 am on a weekend, where as before she was always up early so we are having to learn to pace things. We have been told to make sure she gets exercise to strengthen her muscles, luckily she is a sporty type.

Hope you and your son get some answers soon, it can be soul destroying to feel your not getting anywhere. All you want for them is to be as healthy as possible and most of all to enjoy life.

Take care xx

1 like

Thank you for your kind words.xx


You may also like...