Where do we go?

[Andydad]

I have just discover My son has E D. Can anyone tell me the best hospital or Consultant in London, I should present my child to?

[Jay66]

Hi Andydad and welcome. I don't have the answer but some others on this site do. Hopefully Tillyray and the others will be along shortly with the details. Is it Hypermobile EDS?

[Hidden]

Hi Andy,

I am sorry to read about your son. How old is he if I may ask?

I have recently been diagnosed myself by Hillingdon hospital as joint hypermobile with secondary fybromyalgia. They have forwarded me for a pain clinic at Royal National Orthopaedic Hospital in Stanmore, they also have a department is Bolsover Street in London. Interestingly enough, the Rheumatologist at Stanmore said it was actually ED syndrome/hypermobility and that fybromyalgia is confused a lot with joint hypermobility. It makes you wonder that if rheumatologist themselves very in opinion...

GPs have been reluctant in referring me but when they finally did to Hillingdon hospital, I thought the Rheumatologist there was very much on the ball with diagnosing and referring to Stanmore. I have to warn you though, it seems like the administration in all hospitals (including Charing cross; nerve conduction test) is an absolute mess. So please, if you think you are waiting to long for letters with referral dates to come in, pick up the phone and chase the hospitals.

I wish you all the best!

Yvonne

[Tillyray in reply to Hidden]

Hi Andy. Welcome to the site. You will find that everyone is kind and helpful, so please ask questions, there is a lot of knowledge on here..You don't say how old your son is? My son is now 21. We were both diagnosed recently with hEDS -hypermobility ehlers danlos syndrome- at the Hypermobility unit in the hospital of St John & St Elizabeth in London. These consultations are for 16years and above. The consultant we saw was Dr Alan Hakim who is excellent. alanhakim.com iwantgreatcare.org thehypermobilityunit.org.uk It is private. The consultation was £300. This is a complete consultation with diagnosis, and the all important diagnostic letter . The diagnostic letter guides the GP enabling further tests and treatment that may be necessary.These can then be done within the NHS if preferred. You have access to the specialist rheumatologist afterwards.

Dr Hakim is chief medical advisor to the charities HMSA -Hypermobility syndrome's association- also medical advisor to the EDSuk charity.You can look on their websites for much info.. The HMSA is run by volunteers who have experience of hypermobility and EDS themselves, and you can contact them for any help.

If your son already has a diagnosis made by a specialist in the field, then your son should be having heart tests to rule out the complications that can present in EDS. He may have other body system problems? and so should be referred to the appropriate specialist.He should be seeing a physiotherapist to help strengthen the weak joints without putting strain, or damaging the subluxing,and already damaged joints.A physio who has knowledge of the condition is important.Also an occupational therapist for any splints if needed,and implements etc to help with other things if required, and maybe a podiatrist for orthotics?..If your son is under 16, your GP should have referred him, and so your son should be under a paediatrician at your local hospital.They should organise all that is needed.If he is in school, they should be totally involved in your sons care and organise everything your son requires to enable him to access a school education. But with this, we often find that GP's and Doctors -unless specialised in hypermobility, EDS- have limited or no knowledge of these conditions. You will have to learn all you can and educate others and those involved in your sons care. The charities above are an excellent source of info for that.They also have information for medical professionals...

The hospital of St John & St Elizabeth runs a physiotherapy service for children under age 16 years, and this can be booked. You may need a GP referral for this, but if you ring the unit they will tell you.

Please let me know what other questions you might have and I will try to help.Best wishes to you and your son🙂 x

[Andydad in reply to Tillyray]

Hi Tillyray,

The sight and the advice has been fantastic. my son will be 14 in August.

The advice you have given me, along with Yvonne is priceless. I will now proceed forearmed.

Many thanks again Andrew

[Tillyray in reply to Andydad]

Hi Andy. Unfortunately your son is too young yet to see a consultant at the Hypermobility unit, but he can access the physios there which would be an excellent choice should you decide to go 🙂..

I hope that the consultant your son does see is knowledgeable, although remember that Doctors lack knowledge in the complexity of Hypermobility syndromes and Ehlers Danlos syndome because it is rare -under diagnosed- and some are totally unfamiliar with it..But if you find out all you can, then you can steer your sons care and management in the right direction. Also be prepared to insist on tests and interventions that your son may need..As with anything, it isn't always easy, but with everything in place, it can all be ok🙂🙂 x

[Andydad in reply to Tillyray]

Many thanks again, onward and upwards.

[Andydad in reply to Hidden]

Hi Yvonne,

Many thanks for those pointers and I will take on the warnings with regards to referrals.

Many thanks Andrew

[Andydad in reply to Hidden]

Sorry Yvonne, My son will be 14 in August.

[Hidden in reply to Andydad]

Hi Andrew,

I am sorry to hear about your son, I can imagine you must be worried.

To look at it from a positive perspective, the doctors know more now then 20 years ago. I was diagnosed in my home country with hypermobility when I was around the same age as your son. At that time they did not know that much about it; you grow out of it in a few years time or not. If not, then I was advised to change careers that did not involve a lot of standing (painful knees). That was it.

I am 37 now and now I finally have been diagnosed. I actually think I inherited from my mum. She is in a bad shape and I believe that if the doctors knew then what we know now, she would have been better of.

So please, think positive, a lot of research is being done, I hope the next generation may well be better of then we are now. I am also saying this as my 7 year old is hypermobile, she bruises easily... basically I think she inherited it from me.

One thing I have been thinking of since my last visit to the rheumatologist; she mentioned that she herself has started to take vitamin D as all her patients have a deficiency and the medical world is starting to realise that this vitamin is very important. They​ don't understand it fully yet themselves but it may be very important to prevent muscle weakness and fatigue. As a family we life a balanced healthy lifestyle (not enough fish eating though) but I cannot do miracles when it comes to sunshine so we will start giving vitamin D to our child now too. I have looked into getting fish oil for myself (yech) on top of my Vitamin D tablets.

I believe that it is a combination of things; genes, vitamin deficiency, probably hormones that is causing us problems. I hope they will find out soon a treatment for us and especially for our children.

All the best, take care,

Yvonne

[Andydad in reply to Hidden]

Hi Yvonne,

Thank you for those kind and encouraging words.

Andrew

[Steenygirl1 in reply to Hidden]

Hi Yvonne, you are right about the importance of vit D. Latest research states that vit K2 should be included as this directs the extra calcium absorbed due to increase in vit D to be directed into bones and teeth rather than soft tissue such as kidneys and blood vessels. The MK7 version is longer lasting. There is lots of info available on this google.co.uk/url?sa=t&sourc...

[Hidden in reply to Steenygirl1]

Hi Steenygirl 1,

Thank you for this link, very informative!

Funny enough I spoke to my friend yesterday and she mentioned that she was advised by a nurse in the Netherlands to give her newborn baby vitamin d and k for the first coming 4 years as she is being bottle fed. Reading your article it sounds like it is very important for both children and adults, no matter whether they are bottle fed, to take these vitamins. I told her that 7 years ago when my daughter was born they didn't even had his knowledge so times are changing.

My question for you is, do you know if you can take vitamin k over the counter? Is there any risk on having an overdose on vitamin k?

I had my vitamin d and calcium checked and they are both on a sufficient level. I still take the vitamin d tablets over the counter as they helped getting my levels up to normal again.

PS I read your story about your health history and I think a lot of us can identify our selves in it.

All the best,

Yvonne

[Hidden in reply to Hidden]

Sorry i forgot one thing that i wanted to mention. I started to give my daughter multi vitamin tablets from vita biotics and they don't have vitamin k in it. Do you think that will change in the future?

[Steenygirl1 in reply to Hidden]

I get it from Amazon, vit D and K2-mk7 combined. Find it easier to take the drops. Vit D is fat soluble so better absorbed this way rather than tablets and should take with the fatiest meal of the day, so with eggs or oily fish is even better. Reasonably priced and as far as I have read there are no side effects. The Japanese doctors always prescribe it in combination for osteoporosis according to articles I have seen.

Thanks for your good wishes Yvonne. Chronic health problems take an awful long time to get to the bottom of!!!

[Hidden in reply to Steenygirl1]

Fab! I will have a look. Would you happen to know if vitamin k levels are visible in a blood test? I may ask the doctor to have it checked​ at the same time when they check my Vitamin D?

[Steenygirl1 in reply to Hidden]

It's something that is checked in babies or people who have bleeding disorders I think, although that is vit K1. Unfortunately our doctors, guided by NICE are not quite up to date with this research and when I tried to show a gp printouts of latest articles regarding it, she just didn't want to know. Some GPs are cautious about vit D3 regarding causing kidney stones and atherosclerosis, but this is exactly what the K2 prevents. D3 allows greater calcium absorption and K2 shunts it into bones and teeth. The MK7 version is just a slower release whereas MK4 does not last as long in the body.

K2 is found naturally in green veg so overdosing has not been an issue before

Be interesting to hear your doctor's response though if you showed the article

[Hidden in reply to Steenygirl1]

Thank you, very informative!

I will ask the doctors when I see them. I may even pop in the article a week upfront​ so he can read it? I know doctors can be very reluctant... 😬

We do eat a lot of greens so in theory it should be ok but I thought that from Vitamin D as well. If they can check it, why not?

X Yvonne

[Tillyray in reply to Hidden]

Hi Yvonne. It is a confusing minefield for sure! But hopefully the rheumatologist's will catch up with the new diagnostic criteria. ehlers-danlos.com/eds-diagn...

Good luck and Best wishes🙂 x

[WpgGirl]

Hi - another place to ask to be referred to is the hypermobility unit at UCL. I begged – literally begged – my rheumatologist at Kings to give me a referral there and I finally got one. There is about a six month waiting list so I haven't seen them yet but I understand that they operate much the same as Dr Hakim, that is, they see you once but will give you a diagnosis (or not if you don't have EDS) and then they give you the letter that you can take back to your GP or rheumy for the tests. Good luck - it can be so frustrating.

[Andydad]

Hi all,

I have been told that vitamin D can be very beneficial , is there any particular brand or specific type of vitamin D?

My attention has also been drawn towards the possibility of hydrogenised colegen being of benefit for the condition.