Need advice about GOSH appt may 4th please (update)

[mami2four]

Hi all,
I'm hoping I can get some advice before we go to GOSH on the fourth of May for Lili's first appt. I've never been to London before so I guess I'm panicking a little (I ended up dragging my mother to the Heath hospital with me and that is only in Cardiff because I got so stressed lol)

Should we take the other three kids? I have been told it would be a good idea as they all have varying symptoms of HMS/HEDS but would it actually benefit anyone as this appt would be just for Lili. If we do take them we'd have to stay over night and I can't seem to find anywhere that can accomodate 6 people per room and the websites don't say if the hotels have connecting rooms.

If I just take Lili I could probably manage it in one day on the train, (it wouldn't be fun I'm sure but managable). How long do these first appt's usually take? her appt is at 12.15 and I was curious how long I should allow before the train coming home.

Any other advice anyone could give would be great. I'm sure I'll have some more panics before we go though lol

Thanks
Katie

[barkingmad]

Hi Katie,

If you are travelling to London from Cardiff and need to stay overnight there is parents accomodation but it is just for one parent and the child attending the appt. If you ring the rheumatology secretary she can arrange it for you.

The new referral criteria specifically says that they wont see siblings unless they are symptomatic and need their own appt. For Lilis first appt there I wouldnt take her siblings but you can of course say that you have additional children with HMS and you think they will need an appt or could you take them along next time?....it is likely that they would be quite busy in clinic and having to see 3 other children may just be a bit much at the moment.

I would allow at least 2-3hrs between her appt and your train! I know what is like worrying about your train when clinic is running over or the appt is taking longer than expected (first time appt allow an 60-90mins and then extra for clinic run over, sometimes they ask you to see OT as well, or even the podiatrist)! You will also need to allow for the traffic back to the station. Last time I was up there were lots of roadworks between my station and GOSH, so make sure you have plenty of time.

There is the usual restuarants and coffee shops available at the hospital and the stations so if you do end up with time to kill you have somewhere to sit and chill, there is also a little park just outside the hospital.

I hope this helps.

TC Donna

[mami2four]

Thanks Donna,
Like I said we were told it would be a good idea to take them but I just needed someone else to confirm exactly what I thought(that we shouldn't). I will mention that the others have symptoms when we are there and see what they say but like you said, 3 extra to see is an awful lot to ask.

I phoned to check if it was the right appt yesterday as the letter just said it was rheumy clinic and they did say it was a multidisciplinary appt so I guess I really should allow quite a while but try to stay out of rush hour. I also hadn't even considered getting to and from the hospital to the station lol

Thanks again,
Katie

[christianne]

Hi Katie
When i go up(from Swansea), sometimes i have to do it in one day (I try not to, though, as I am that bit further again than you, and it kills my joints let alone poor son's, however it is quite expensive to stay overnight ). I book the train back allowing plenty of time so i am not in a panic. As Donna says, there can be bad traffic getting from Gosh to Paddington. If you book in advance using a website like the trainline you can get a reasonably priced ticket. The cheapest times for getting back to Wales are after 6.15 or sometimes after 6.45, and so I aim for one of those trains and if I have plenty of time I get myself over to Paddington so that I know I am there safely, then go to eat in one of the eateries around there(there are all sorts, italians, steak houses, macdonalds, you name it).Alternatively if there is loads of time then you can get a taxi or tube to the centre and look in the shops (Hamleys is a big favourite for little ones and is a real eye-popping sight for them), again make sure to leave time for the journey to the station. On the way to GOSH I would allow an hour from the time of your train's arrival to he appointment time, sometimes there can be a delay on the train, and a queue for the taxi, coupled with bad traffic, so better safe then sorry. I understand about panicking at being in the 'big smoke' as i felt like that at first, now I am an old hand at it!
I think Donna's advice about the other children is good advice, it would be worth making appointments for them separately unless the advice you are given this time would be enough to be going on with.Or maybe take the next worst affected(or the one who is happening to have a flare up at the time!) with you to the next appointment.
Good luck, let us know how it goes,
Christianne

[mami2four]

Well I think I am about recovered from our trip on Wednesday lol. We were really lucky that a lovely lady at the table next to ours on the train overheard us talking about going to GOSH and she was going to a hospital around the corner so she took us on the tube and showed us where to go.

Unfortunately we were rushed as they needed the room for the next clinic so i didn't get to give all my explanations as to how bad she is or ask all the questions I wanted and left there a bit deflated really

Don't get me wrong, Sue was there and she was fantastic but the dr although very lovely seemed to know little more than the rhuemy we saw in Cardiff. When I mentioned that in our appt the dr had said it was HEDS but then the diagnosis letter said HMS he said that they don't call it HEDS now as they are the same thing, I thought it was the other way around?

Anyway, I would have been more than happy to have gone just to see Sue TBH and she gave Lili excerises to do for her legs which we have to build up to 30 a day before we go back in 6 weeks time just to see the physio and they will add weights into it. She kept saying that Lili had the potential to be a great gymnast or dancer and when she is stronger we should seriosly consider this route which really knocked me for six as she can't even walk to and from school everyday without being exhausted and in agony.

There was no mention of the two week physio programme and I'm curious as to how bad a child has to be to get on that? To me she is bad but i only have myself and her siblings to compare to, we can't walk for more than 15 mins without tears(with boots-was even worse without) and her arms and hands hurt almost constantly not helped with the fact that her shoulders have just started becoming a bother when she is combing her hair.
The logistics of me being there for 2 weeks, 3 other kids at home and hubby's work just don't seem to fit but if it means she doesn't cry all night just because we went shopping that day I would take her in a heartbeat.

Hopefully the next appt will allow me more time to explain my worries and ask more questions

Katie

[Alison C]

Sue will probably see how your daughter is in 6 wks and then judge whether she needs the fortnight stay. Hope all goes well with the exercises. Great you have an appt so soon. Do rely on Sue - she is fab - she has seen so many children with HMS that you can trust her long term views re the gymnast/dancer prediction. Sue can take calls and emails (ask HMSA HQ or google for add) imbetween visits however you need to be brief as she is so busy.

[mami2four]

Thanks Alison

I completely trust Sue's judgement and I'm so grateful that she was there. I just suppose it's hard to see that far ahead at the moment.

She did give me her email addy and phone number on the exercise sheet. I think I'm going to have to get in touch soon as I'm struggling to find the weights she told me to get