Hypermobility Spectrum Disorder, daughter, aged 13

Jon_Barker

Hi, my daughter was diagnosed with joint hypermobility syndrome at four days old. Since 2015, her symptoms have manifested significantly, the main one being at present chronic pain all over her body. She is seeing an NHS paediatrician and has had a number of tests. She is also seeing a osteopath who trained with Dr Alan Hakim, consultant in rheumatology. We are members of HMSA and I have recently ordered Claire Smith's book, Understanding Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorder. I would hugely appreciate if anyone has any further advice in how they manage on a day to day basis. 

steve51

Hi @Jon_Barker

Good Afternoon & Welcome it’s great to meet you today.

I am one of the Community Champion’s here at Scope.

We have got a senior member who will hopefully be able to offer you some help/advice.

I will forward your post onto them for there take on things for you???

 Hi @Adrian_Scope

Can you please offer me some help/advice with this post.

Many thanks.

@steve51

Chloe_Alumni

Hi @Jon_Barker and a very warm welcome to the community! Thank you for sharing this with us. I have hyper-mobility in my hands (although I also do have CP which counteracts it slightly). For me, I have also found it hard to write with a pen due to the pressure this would put my joints under.

Has your daughter been seen by an occupational therapist? I had one when I was about her age and they were able to implement support at school and also equipment which made things easier.

chiarieds

Hi @Jon_Barker - Welcome to the community from me too. I have the hypermobile type of Ehlers-Danlos Syndrome, & I'm also a physiotherapist, tho I qualified a long time ago. Have you considered joining the Ehlers-Danlos Syndrome Support group? See: https://www.ehlers-danlos.org/ You would be most welcome, & you might find it helpful, as there is also information on the hypermobility spectrum disorders (previously called Joint Hypermobility Syndrome) there; coincidentally Dr. Hakim is one of the Medical Advisors.

Has your daughter had any physio? There's some info here: https://www.ehlers-danlos.org/information/physical-therapy-for-hypermobility/

My mainstays are above all correct posture, & exercise (of the right muscles), heat for pain (tho some do better with ice) & distraction. When possible, I'm sure hydrotherapy would also help.

I also have a silver ring splint which holds my problematic thumb in the right place. I bought this from a lady that has EDS herself (she also takes orders through the NHS). If you're interested, please let me know. If your daughter has problems with any finger or thumb joints, they're so much nicer, & more comfortable than some traditional splinting. Mine has even been admired by people thinking it was a piece of jewellery. With my best wishes to you & your daughter. 

Jon_Barker

Hi all, many thanks for welcoming me to the community & your kind comments. @Chloe_Scope thank you for your comments. We bought my daughter some pens to help with her writing, during lockdown she has been using a laptop. Occupational therapy have been very helpful, installing a bannister and shower rail, they follow up with us on an annual basis. @chiarieds thank you for the links. Interesting that you are a physiotherapist. We have recently found someone locally who provides therapy and has hypermobility. It makes such a difference when you have someone who understands the issues. Both ice & heat do not seem to have any effect. Hydrotherapy is on the list once pools can get back into action. The chronic pain seems to have flared up in the last two weeks, unfortunately a pain clinic informed me on Friday that it will be at least six months before she is seen due to COVID-19. 

chiarieds

Hi @ Jon_Barker, thank you for your reply. It's great to read that you've found a therapist that will truly relate & have a lot of understanding; not great that they have hypermobility issues, however.

There's some thought that you have pain, which leads to possible de-conditioning, which results in more pain, & is therefore a vicious cycle in those with hypermobility. This from a lecture Dr. Hakim gave in 2019 that I've just been watching. It's certainly difficult to manage, & it's unfortunate in your daughter's case that, due to Covid-19, it may take some time for her to be seen in a pain clinic.

I do feel for her. My problems started at a similar age, but I became a physio & had a family. All things are possible if a way can be found to manage her pain.

Please keep in touch & let us know how you're both getting on, thank you.

Chloe_Alumni

Hi @Jon_Barker, I'm really glad you have an occupational therapist that has been so helpful.

Sorry your daughter has been in more pain. The Live Well With Pain website is a great resource and a website that I have personally found helpful.

Honorade

@Jon_Barker I also have a daughter with the same condition. I am very interested to learn from your experience. We have seen Dr Chikanza, a private rheumatologist but he fell ill and we had no help. I am considering having her seen by Dr Hakim. Has he helped at all? Has the diagnosis been accepted by the GP? Because ours hasn’t accepted the private diagnosis and the NHS doesn’t help. We are stuck so any recommendations would be so helpful. I am also very interested in terms of daily living adjustments. You mentioned the shower rail. Anything else? How did you find out about those? 

Many thanks

janer1967

Hi @Honorade and welcome to the community 

This is quite an old post so the member may not puck up your message 

To get aids and adaptions you need to self refer on the gov website for a care needs assessment and a ot will come and make recommendations of anything required and provide them if possible 

I will tag in another member who has lots of knowledge and experience with this condition

@chiarieds don't know if you can help 

chiarieds

Hi @Honorade - & welcome to the community. Thank you for the tag @janer1967 & sorry to you both for the delay as I haven't been too good today.

Myself children & grandchildren all have the hypermobile type of Ehlers-Danlos Syndrome (hEDS). It's frustrating when you get a diagnosis of hEDS or Hypermobility Syndrome Disorder (HSD) & other Drs don't accept this; we had one rheumatologist try to overturn myself & children's hEDS diagnosis until he realised who had diagnosed us. Sadly this consultant geneticist, who was also a dermatologist & had an interest in connective tissue disorders (& was the person to see) has since retired.

If you haven't already seen this GP's 'Toolkit,' I would suggest you have a read through & bring it to your GP's attention. Please see: https://gptoolkit.ehlers-danlos.org/

EDS & HSD are far more common than many Drs expect, so they often don't consider them unfortunately.

You can self refer for the needs assessment jane mentions above here: https://www.nhs.uk/conditions/social-care-and-support-guide/help-from-social-services-and-charities/getting-a-needs-assessment/

janer1967

@chiarieds sorry to hear your not having a good day hope your soon better take care 

chiarieds

Thank you @janer1967 -  it was just my allergies (which can part of hEDS in some of us)

flaring up; not much sleep, & continuing sneezing throughout the day. Doesn't sound like much, but when your eyes are continuously watering &  sneezing all day long, not much fun.

MaidMarion

Jon_Barker said:

Hi, my daughter was diagnosed with joint hypermobility syndrome at four days old. 

Hi Jon
I note that your post was from 2021 - I only just joined in 2022.

I was never diagnosed as a child and my hyper mobility doesn't quite meet the clinical criteria.

But I can also confirm that I have been in pain since puberty.
Later I developed arthritis because the joints aren't aligned when you're Hypermobile.

What has helped are gentle exercise classes and yoga.
This is needed twice a week.
With the new online classes, it is a bit easier to keep up.

I also have other soft neurological signs such as lack of spatial awareness, clumsiness and motion sickness,  gluten and lactose intolerance. 

Let me know how you get on. 

MaidMarion

chiarieds said:

Hi @Honorade - & welcome to the community. Thank you for the tag @janer1967 & sorry to you both for the delay as I haven't been too good today.

Myself children & grandchildren all have the hypermobile type of Ehlers-Danlos Syndrome (hEDS). It's frustrating when 

Hi
Things are actually worse than I thought- doctors are trying to overturn this diagnosis???

I was never diagnosed as a child but aged 10 was given special expertise classes to go to twice a week.
That helped a lot, but they ended after 2 years.
Now the doctors won't accept hypermobility but agree on arthritis that developed as a consequence.
Had an assessment for using aids at home (chair in shower) and occupational health assessment at work (vertical mouse).

What treatment or help are you getting?

Bless

Honorade

@chiarieds, thanks for you answer. What do you mean by bringing the GP's toolkit to their attention? How would you do that? I am not sure how to speak to them anymore. The GPs at the surgery sent me a letter complaining of my attitude when I was just trying for the GP to act upon my private Rheumatologist's letter. I was shouted at by the GP for "shopping around". Beyond belief when it took me 49 years to get diagnosed!!
I contacted the EDS association but they have never helped. Any suggestions would be highly appreciated!
Thanks

Honorade

@MaidMarion, my daughter has been followed for a time by an N.H.S physio. As her muscle strength and stamina are not improving, we are now both seeing a medical pilates teacher at APPI. She is able to adapt all exercises and my daughter has made more progress in 6 months than in 10 years with the N.H.S. The private Rheumatologist has prescribed something for when the pain is too much.
I've have been sent to mental wellbeing class which I couldn't joined very much because of hospital appointments. Honestly, just using mindfulness apps are more beneficial.
It's nice talking to you!

Honorade

Thank you @janer1967!

MaidMarion

Honorade said:

@chiarieds, thanks for you answer. What do you mean by bringing the GP's toolkit to their attention? How would you do that? I am not sure how to speak to them anymore. The GPs at the surgery sent 

Dear me,
That sounds horrendous!!!
Is that a rural GP or inner City?!

I haven't even tried very hard bringing up ligamentius laxity and am now at the arthritis stage...

Now the NHS introduced social prescribing, I will try and get a yoga class. I already get a teaching staff discount on my other yoga class- £4.00 per 40 mins.
I can't pay for another class- only working part time because of my longterm condition. 

I also found physios pretty useless for me- they don't understand the problem. 

How much is you pirates?

Honorade

@MaidMarion, how do you do social prescribing for your yoga class? 

Our Pilates is the same price than a gym membership. But I had to take a loan. I can’t work since my daughter’s birth, but the medical Pilates help. Hopefully I will soon be well enough to join a mainstream class. Last time I went to one, I was left bed bound for 2 weeks! My daughter has been advised not to practice any sport for the moment. We are working our way to normality

L_Volunteer

It is really positive to hear the medical Pilates help @Honorade. Thanks for sharing your experiences with us. What do you think the differences might be between medical Pilates and a mainstream class?

I don't have much experience with sports but I hope you and your daughter are on the mend soon and able to take part in the sports you both want to 

MaidMarion

L_Volunteer said:

It is really positive to hear the medical Pilates help @Honorade. 

Good point.
Every sports trainer should take a history from the members of the group and advise accordingly, which exercises are suitable.

A "gentle" or beginners class shouldn't put too much strain on people at all.

Two examples:
I went to a yoga class with sciatica pain. At the end of the class, the pain was gone!

I went to a different yoga  class with sore shoulders and next day was in agony and felt much worse overall. 

"Special" classes can be a lot more expensive unless you get funding.

Best
M