Sue's Clinic - 14th April @ GOS???

[Jobaz]

Hi

I think (waiting to get full confirmation from Sue re:accomadation) my son is attending the course in march week 16th & 23rd... is this when you are going??
I think there is a course on the first 2 weeks of march isent there too ??? wish we were on that one as im due to give birth at the end of march !!!!!????
which one are you on ?

[Jobaz]

opps.. forgot to say, my son is 3 years old.
will you be staying in the hotel they provide also?? do you know if they have TV in the room?? seems like a really rubbish question, but my 3 year old is in bed for the night by 5pm the latest & I juist have visions of me laying in the dark !!!
also, when do you get the room from? the sunday or the monday?
x

[alison1984]

have sent u a pm, b4 i read this, but yes there is tv in the room u pay a £10 deposit for remote which u get back, also we are booked from the sunday b4 the course starts as u have to be in GOSH @ 9.30am on the monday morning

[rainbow]

Hi
I just wondered if anyone else is going to GOSH end of April? I am going with my daughter Hannah fron 27th April. She has EDS 3 and needs some help with pain control and strengthening her muscles ,which are very weak. We have only been to GOSH once before when we saw Prof. Grahame with Susan Mailard the physio.
If anyone can help who has been before i have a few questions
- Do the kids need trainers for the physio or do they just have bare feet?
- We are staying in the patient Hotel, is there a shower or just a bath in the bathroom?
- How are the rooms laid out? It says in the info you get a single room, does this mean i have to sleep on the floor? Sorry sounds like a stupid question but i will be in agony if i have to sleep on the floor

Well i hope to get top know you all better i am new on here, but not new to EDS !

Thanks

Jo

[dawn barlow]

Hi, my 2 both wore trainers when they done their physio at GOSH, think it's easier for them with some of the exercises. The room we had did have a shower over the bath, but i'm not sure if their all the same. You won't be sleeping on the floor,I think most rooms have a spare bed that pulls out from one of the main single beds, we had two single beds and then the pull out one. The lady next door to us had a single bed and pull out one for her daughter, so think they are all pretty much the same. The hotel is very nice and clean i'm sure you will get on fine. Their is also a hair dryer built in each room, bit noisy but better than having to take one with you. The kitchen/dining areas are also very good, should find everything you need there. If you need to know anything else just ask. Either on here or pm me. Take care, Dawn x

[rainbow]

HI Dawn

Thank you so much for your reply. That is really helpful, its good to know i wont be on the floor! I'm glad about the shower too i cant get in a bath very easily. Thanks for the tip about the hairdryer, one less thing to pack
How did your two cope with all the excercise? I'm a bit worried but i suppose every one is in the same boat . Hannah gets tired really easy and has a lot of pain she is 10, how old are yours?
Thanks again

Jo

[hannah]

Hi Jo,
not got any specific advice just wanted to say that I did an inpatient pain management course (at a different hospital) at age 11 - and I loved it. I made some good friends. I didn't have mum stay with me and I didn't miss her - much to her dissappointment
Hope it goes well,
Hannah

[rainbow]

Hi Hannah

Thank you for taking the time to reply It is really good to hear about how you coped at a similar age to my Hannah. That does make me feel much better i appreciate that. I hope she will make some new friends too that would help her a lot.
How are you doing now?

Thanks

Jo

[hannah]

Well, I wasn't actually diagnosed until I was about 22yrs old - by which time I had a number of chronically dislocating joints and even more stretched ligaments. so I'm not a good role model. the reason I got the course was due to 'chronic back/hip pain' - which was vastly helped by the physio and pacing, and I was able to live the rest of my school days and right up til after uni relatively normally.

I can categorically say that pain management techniques and pacing and physiotherapy exercises (even if just done at home) are the 3 most key things for me - and with these the future is definitely bright. Hard work maybe, but bright

[dawn barlow]

Hi, My 2 coped really well, Yazmin was 8 at the time and Jordan was 13, They were very tired by the end of each day and didn't really want to do very much. There is a small TV in the room so they just watched that or played on their games. There is a room downstairs and on certain days they show films for the kids in the evening. There is a notice board that tells you about when they r on. You should also get vouchers for your daughters dinner and tea, to use in the hospital restaurant, which you can eat in or take the food back with you. They do work them quite hard in the gym, but we found it worth it because it has really helped my 2 a lot.
Dawn x

[rainbow]

Hannah

I'm sorry to hear you did't get your diagnosis until late, a common problem i think I also have EDS3 and was diagnosed for a long time. I have had various surgeries on my knees and shoulder. I also have my right wrist fused. I am desperate for my daughter to aviod all this and hope this GOSH stay will be the best thing for her. Thank you for your encouragement and for sharing your story.

Jo

[rainbow]

Thanks again Dawn

The films sound good, i am expecting Hannah to be very tired, she is tired when she gets up in the morning! The vouchers will be handy aswell, thanks for all the tips it is great to know what to expect. Do they do excercises for all the body or is it mainly their legs? I ask because Hannah has a lot of trouble with her arms, wrists and hands aswell as her legs. I am hoping for help with her hands so she can write without so much pain at school. Also do they have to have a blood test? Hannah has never had one, not sure how that would go down
How are your two at the moment? Do they cope with school ok?

Many thanks

Jo

[dawn barlow]

Hi Jo, My 2 never had blood tests, think that would only be if there are other problems and they would have mentioned that before. They usually have a few children in the gym about 6 when mine were there and they all did the same thing. They exercised ankles, legs, arms, wrists and did things like sit ups to help strengthen their tummy muscles too, so it's an all over thing which is good. They also use weights which they increase as they get stronger. My daughter said they used putty in their hands to help strengthen there. They spend a little while in the gym in the morning then go to he hospital school til dinner. Then after dinner it's back in the gym, so u get quite a bit of spare time. Mine are getting on ok got to go back for a check up again in May.
Dawn x

[rainbow]

Hi Dawn

That's very helpful, sounds like it will help her wrists and hands then I really am so gateful that you have taken the time to answer all my questions, it has helped us a lot. Good luck for your appointmet in May , i'm glad to know that they doing ok at the moment.

Jo x

[alison1984]

my daughter megan who is 4 has has just returned from the GOSH physio course and it was really good not just for her but for us too as you get a parent group on one day of the 2 weeks which was very informative.
the children had trainers but at the begining of every session they were asked to take off their shoes ready for the session, on one of the tuesdays you will see a pediotrist re shoes and what they are wearing is correct or not.
the patient hotel is superb, very similar to a travel lodge in lay out, the single rooms have 2 beds and bathroom area, but there are some 2 bed flats (which we had) which have there own dining area and kitchen. all rooms also have a safe and colour tv.
if you are staying in a room as aposed to a flat then there are communial lounges on every floor with dining area and kitchen with fridge with all you need.
there is also a laundry on level 5 which is £2.20 per wash and 20p per 10 min drying time
you will get food vouchers worth £8 per day for your child which can be used in the hospital canteen (lunch food WAY better than evening!!!)
you have to pay a £10 deposit for your room card which you get back when you leave.

really sorry if i have repeated anything any one has said as a little tiered so not read all the posts!

good luck and if you would like to know anything else i would be happy to help if i can!

ali