Need advice please re daugher diagnosis age 14

[dotty]

Hi All, this is my first post - will write a bit of history.

I noticed when my daughter was around 4 that her little fingers were bent, went to the GP, who did not think it was anything to be concerned about - that is how she is do not worry - her little fingers were bent on both of her hands. After a mishap at home with a door, she was taken to the hospital for some stiches in one of her fingers at around 7 - she was referred to the fracture clinic - the fracture clinic said she had a "conjenital deformity" and they would like to see her when she was around 14 once she had stopped growing. Around 2 years ago, I noticed that her other fingers seemed to be bending, they are not like the swan finger type on here, but growing slightly crooked - doctor again said to leave - anyhow her writing has always been hard to read, she does not hold her pencil/pen correctly, but effectively for her. Now she is about to embark on her GCSE's in September, and her english teacher said her writing is really hard to read - I explained to her about her pen grip and she complains that her hands ache. I mentioned also to the learning support at school and they said they would refer her to the OT. Anyhow last night I returned to my GP and saw a different doctor, he examined not only just her fingers but all of her joints and said she has "hypermobility syndrome" - he kindly looked up your web address - hence how I have found you. He said he would refer her to a hand surgeon at the hospital - all of her fingers are affected and as she is getting older the more crooked they seem to be growing. He said that they may not operate until she is around 20 - have spoken to the school today, and they say they have referred her to speech and language therapy - I don't know what this has to do with her fingers though ? - they are now going to refer to OT - just wondered if there was anyone on here who has experienced this similar situation and what happened - I do not know how long it will be for the OT to come into school, I wonder whether I should return to the doctors and ask for an appointment with them directly - and what about seeing a hand surgeon - from looking at the posts on her I don't think that surgery is an option - anyhow very knew to all of this - only had a five min app with doctor last night - feel I would like to see someone to carry out further investigations - who do I need to ask to see or should I just wait until I see the hand surgeon.

Thank you in anticipation of replies - Dott

[rebeccagraceson]

Hiya

Have you looked up the symptoms for HMS/ HEDS? Does she have any of the symptoms other than the hand thing?

I haven't heard about fingers growing crooked as a symptom of HMS but it could be that i've misunderstood you. Can she straighten them but also they can over-bend? Are they hypermobile?

Have a good look round the medical information on this site and the ehlers-danlos website (hypermobility type) to see if the description fits your daughter. Also, I posted a link to a really good review of HEDS (very similar or the same as hypermobility syndrome) earlier - have a look round and follow the link. It's a very comprehensive guide.

Becky
xx

[rebeccagraceson]

Here is the link to that guide. (put the www. in front of it as we are not allowed to post proper links here)


ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=gene&part=eds3

Becky
xx

[dotty]

Thanks for your reply Becky - very much appreciated - I will look at the links you have sent me. I have been looking around at various bits on this site and on the net - being totally ignorant to this, I am aware that I do not want to look into all symptons too deeply, but after just a 10 min bit with the doc last night rather a lot to take in. For instance, both of her arms - she can literally rotate them so am I right in saying shoulder joints are hypermobile - as far as her little fingers they are completely bent from the middle bend of her fingers, the doctors said that her hypermobility is more extensive in her upper body than her lower. the other sympton I have noticed is her skin in that you can easily see veins throught it more so that anyone else in our family, and as she has gone through puberty she seems to have got lots of stretch marks which seem to me stand out very red and not as my other children - there seems that this may be a link, and she also has suffered with astma which my other children and i have not.

I had spoken to the school a while ago about getting OT involved so they could assist in her holding a pencil more effectively, would you believe they had referred her to speech and language - the school said that they have good ideas to help children hold a pen - I don't think they get what I am talking about so I am going to go back to my GP and get a referal to OT - thanks again Becky for your reply and anyone else who has any advice to offer an ignorant mother.

Dotty

[shen]

Hi Dotty,

I dont know if this is what you mean but my fingers are crooked too, my middle finger on my left has started bending to the left at the joint, my index fingers twist inwards at the top so that my nail is not facing upwards properly (if you understand), and the rest are just generally banana shaped. They aren't severely crooked but it is noticeable. I always thought it was to do with the HMS, and that my fingers were just wonky, they aren't painful but i do hold pens/cutlery in a weird way.

Shen

[MandyJ72]

My Amy (nearly 14) has had problems with her hands recently, hers are not "crooked" but are mobile and she has sore hands when she writes loads.

She goes to physio (GP can organise this) and because the physio's are not "hand specialists" as they called it they referred her to OT AS WELL as them as she has problems with other joints.

I, personally, would say go back to GP and ask for a referral to an OT for him. Amy has hand exercises to do with thera-putty to strengthen them up and other things as well and they also said about using a laptop in school.

She has gone from being hardly able to write at all due to a bad flare up so writing and drawing in moderation at school. Also speak to the school support office again and ask if they have an Alpha Smart or Laptop she can use? Amy started off with the Alpha Smart but found it quite limiting as it's text only and no formatting available and she now takes her laptop in to school every day and uses it on and off to allow herself to pace herself - she draws in Art & CDT on a Tuesday but the rest of the day uses the laptop, a Thursday she writes for first couple of periods as there is not much written work in those classes, then she starts to use it.

The OT can also arrange with the school for her to have extra time for exams and be able to use the laptop as they will be starting to arrange that for Amy after the summer, when she starts on her 3rd yr Standard Grade courses as they said they can't do it before then.

If your daughter is struggling with hand-writing then using the laptop would certainly help her.

M
xx

[Alison C]

Hello

Welcome to the site. Getting a late diagnosis is quite common - so pleased your GP knows about HMS. Maybe can I suggest you go back and talk more about it with the GP now you have had time to search HMS here and elsewhere? Yes, it is a lot to take in at one time.

I would certainly suggest that you need an OT and physio, and maybe orthotics (re feet - are they flat or very high arched - inserts are fab for some) referral - preferably from GOSH as well as locally - and I also am wondering why Speech/Lang has been suggested. Some people with HMS do have hypermobile jaws (slipping jaws - subluxing TMJs), and can find chewing, swallowing more time consuming than most - my children are known as "slow eaters" at school.

Please have a look at the OT page here on the main website for ideas how OT can help.

Cheerio
ALison

[barkingmad]

Hi Dotty,

I dont have much else to say other than your daughter isnt alone. My son uses a laptop due to HMS in his fingers and wrists. My 10yr old daughter has it to, she has seen a hand specialist OT, who prescibed a wrist splint, pens and pencils with padded grips, sloping desk top, putty for srengthening exercises etc.

My eldest who is nearly 15, has extra time for exams due to handwriting causing pain and fatigue, he is also if he chooses allowed a scribe. My daughter has been awarded extra time for her SATS too.

the school should allow her to do all work on a laptop. There is a new booklet that we have just published called 'An Educators Guide to HMS' it might be worth asking for it to be sent to you.

[dotty]

Thanks everyone for the wonderful resplies - I am going to be spending some time over the weekend researching your ideas and feedback.

Just out of interest and I expect lots of you will know - I have appointment for my daughter to see the hand surgeon in a couple of weeks, when I spoke to her secretary today, she told me that my GP who has been wonderful in his depicting this said she had a beighton score (probably spelt this wrong) of 7/9 - what does this mean? -
Dotty

[barkingmad]

Hi Dotty,

the beighton score is used as part of the diagnostic tools to establish degree of flexibility in certain joints. 7 out of 9 would indicate that in certain joints your daughter is indeed quite flexible.

However, this scoring tool was developed as part of research projects so it is flawed in someways, as it only tests certain joints, little fingers, thumbs, knees, elbows, hands on floor for spine etc In fact you can have a diagnosis of HMS if hypermobility is found in only one joint which isnt mentioned above and as a rule this wouldnt mean that a person with only one hypermobile joint is less affected than your daughter. The key to diagnosis is clinical exam and history as well as a combination of beighton score, ruling out of other conditions etc. and the identification of other associated issues that go with the 'syndrome' part such as pain longer than 3 months, etc etc

Despite all that it is very common to use the scoring as a means of establishing clinical understanding amongst the professionals.

Hope that helps some.

[dotty]

Thanks for the explanation Donna, very helpful

[Sandy L]

Surgery often heals less well in people with HMS, so I think the suggestions to see occupational therapy are on-target. A physiatrist is a physician who specializes in physical medicine and rehabilitation; a consult with such a specialist would seem desirable, too. In institutional settings, physical therapists (PTs) and occupational therapists (OTs) often work under the direction of a physiatrist, though orthopedists also often supervise PTs.

[dotty]

Hi Sandy,

Thank you for your reply - information is very informative - I am hoping that when I see the hand surgeon, she will be able to give me more information and recomendations - thank you again.

[jax]

My son, aged 9, is also having problems in the hand department. He has a sloping desk, special chair, triangular grip
pencil and extra time / pacing for planner work at school and physio fortnightly and group co-ordination classes 3x a week.

His hands tire after about 10/15 minutes of working. He is doing typing practice as well at school, should
he require lap top to access curriculum. He's above average on reading and finding it frustrating not being
able to keep up with the work in correlation with peers.

My son spent a large majority of his childhood playing with play dough - he does seem to find it relaxing but
he is stil having problems. He's also a lego and computer gaming addict.

I think regular handwriting practice in a sympathetic manner is helpful. (the sooner the better!) It's not always easy though to access
a child who is having pain and who may be suffering delays from something like a very early birth (like my son) or other health issues.

Jax
x

[jax]

Dotty,

Also must add - I have a beighton of 6/9 (age 35).

Please also consider carefully, alot of people with hypermobility (syndrome) are not always pleased with the results of surgery.
Sometimes relieving one area places strain on another area.

Just info for you to consider.

Jax