Paedeatric consultant needed

[nicky1000]

Hello all,

My 11 year old daughter has been diagnosed with JHS and GORD (although I am now starting to see that the gastro issues are due to the JHS....... I cannot find a consultant that will see her due to her age and her GP is less than helpful. (we took years to get a diagnosis and not from him!!) can anyone offer me some info on where I can take her for some gastro and JHS support on NHS or private? Please private message if you need to. She is so isolated and I've very much lost my once vibrant child, who is missing so much school and is in constant pain....:(((( .

[vikkid]

Hi, sorry to hear you're not getting the support you need. Its very difficult to find the right people. I would highly recommend Dr Nelly Ninnis at St. Marys near Paddington in London. She's a paediatric doctor NHS, you might have to wait a bit to see her but it's worth it!

Gentle hugs.

[nicky1000 in reply to vikkid]

Thank you so much.

[vikkid in reply to nicky1000]

No problem. I think my daughter has pretty much seen everyone now! Dr Ninnis co-ordinates everything and has enabled the correct input re all the related issues. If you can go privately then the best place to go is thehypermobilityunit.org.uk/ some of the consultants listed can also be seen on the NHS. We have done a mixture of both depending on whether the private healthcare plan will pay or not. My daughter has also been seen at GOSH however we had a better experience under the team at Stanmore. Again Dr Ninnis will make the required referrals.

Kind regards,

Vikki

[nicky1000 in reply to vikkid]

Hi Vikki,

I am now so confused... I have contacted the Hypermobility clinic and the only person that will see children is Prof Grahame and his next appt is in April! I have contacted Dr Ambrose's secretary and she doesn't see children! (Same old story......hard to find someone to see children). So, Dr Ambrose's secretary is getting back to me to see if Dr Ioannou or Dr Sen will see her? I am not sure if it is worthwhile seeing either of these? they are both rheumotologists but I am worried we need a hypermobility person? Blimey, this is an ongoing nightmare!

Regards,

Nicky. x

[nicky1000 in reply to vikkid]

Hi again,

So, in your opinion, waiting for the Hypermobility Unit is the better option as you feel they are better equipped with knowledge? We have waited this long and we may as well wait another 2 months for the best help, I think.......

regards,

Nicky. x

[vikkid in reply to nicky1000]

Hi Nicky, if my daughter had to choose 1 consultant it would be Dr Ninnis. She has helped her so much and does the very valuable role of co-ordinating everyone else, including our GP. We waited nearly 12 months to see her on the NHS though. I'm not sure what her current wait list is like.

We have gone privately to the Hypermobilty Unit for cardiology and physio therapy.

She was seen by a colleague of Prof Aziz but although her digestive problems can make life miserable at times they aren't at a level where the intervention is worth it! She takes anti histamine for MCAD and Omeprazole for reflux. She also tries to follow the FODMAP diet.

You do have to learn how to self manage things but there are services that can help. My daughter is now 18 and in a very different place than when she was 11. It is possible to live well with JHS, it's just a difficult journey at times!

With kind regards,

Vikki

[nicky1000 in reply to vikkid]

Hello Vikki,

Righto, and I see from the Hypermobility Unit website that she is not a rheumatologist so cannot make a diagnosis but it seems she is the person to see regrading onward managememt etc. So, firstly, I would like to get a confirmed and accurate diagnosis so can only see Prof Grahame for this as he is the only one that sees children. So, thank you for you help. I am sorry if I have asked you a ton of questions but it really does seem that we have to help each other these days as the doctors are not as knowledgeable as we would like........it is far better to get recommendation than dive into the deep end, I think. And yes, I want my daughter to be empowered how to live with this rather than it getting on top of her and being debilitating. is your daughter a lot better these days?

Nicky. xx

[vikkid in reply to nicky1000]

Hi Nicky,

Sorry, I didn't realise she hadn't been formally diagnosed yet. A Local geneticist should be able to diagnose or a consultant can refer to Northwick if required lnwh.nhs.uk/services/a-z-se...

We were diagnosed locally years ago but have also been seen at Northwick more recently.

My daughter is managing really well now. Condition is still the same but a combination of things have enabled her to get on with her life I won't lie, it's hard but compared to where we were when she was the same age as your daughter we are a million miles away.

Vikki xx

[pikamonster]

I saw Professor Rodney Grahame who referred me to Dr Aziz for gut problems privately. Professor Grahame I think now only does paediatric and he's at St Johns and St Elizabeth in St Johns Wood. My little brother and sister are being sent to GOSH in Central London where I know they manage EDS inpatient or outpatient. They're 11 and 13. By all accounts GOSH would be a good place for her to be referred to.

[nicky1000 in reply to pikamonster]

Hello,

Thank you for your message!

I did notice that Dr Aziz specialised in the gastro issues connected to this condition but saw that he only sees adults! Therefore, we are again, limited to who we can see as it is an 11 year old (very frustrating indeed).

I have asked my GP for a referral to Dr Grahame (although he thinks my daughter doesn't need any further help) based upon the help you and the rest of this forum has given me so far. So, thank you so much for your input and I can certainly bear GOSH if Prof Grahame feels she needs further onward referral. His next appt is not until April! Nightmare.....this could not drag on any more if it wanted to.....

Out of interest, how old are you now and how old were you when you got a diagnosis? Do you still have gut issues now? Thank you for your time so far. It is very helpful for me to help my daughter.

Kind regards,

Nicky.

[pikamonster]

Hi Nicky - I sent you a private message that's the length of a short novel. I did so to prevent cluttering the thread and hope it's useful.

[Kate37]

I am about to take both sons to the hypermobility unit at the hospital of St. John's and Elizabeth in London. It's a private hospital and Prof Graham sees children. I've struggled with the NHS who are quite dismissive.