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

Please post here any query that relates to Great Ormond Street Hospital/or your child's/adolescents hospital appointments generally. Within this section is helpful info regarding tips & hints for hospital visits -stays.

Re: Anyone going to GOSH 2 week physio end of April?

Postby rainbow » Tue Apr 14, 2009 5:01 pm

Hi Ali

Thanks for the information, it is all really helpful and appreciated. I think i will let her just wear her shoes to the physio then if she will be ytaking them off. After our clinic appt they said she needed some supportive boot type of footwear so we got her some Kickers which do the job but were really expensive. I dont want to buy some trainers if she does not REALLY need them. Also we are trying to cut down on the stuff we take so the case/bag is not too heavy.
How did Megan cope with the excercises? Is it a big group of kids of all ages? I am now looking forward to it a bit more since all the lovely people on here have answered all my questions and reassured me! I hope it helps Hannah she has a lot of pain at the moment.
Thanks again


Re: Anyone going to GOSH 2 week physio end of April?

Postby alison1984 » Tue Apr 14, 2009 6:06 pm

megan coped really well the only thing that was hard was they encourage you to take the kids out after each session to the park or something but megan was offten way to tired especially come the end of each week.
we were unfortunate that it was the g20 summit when we were there and the city was on red alert so to speak for a terrorist attack so didnt venture far all though a group of us from the group did venture to hamleys but meg had to use her wheelchair.
we bought new boots b4 we went and then trainers to but they really werent needed. the group of kid was of all ages and didnt just have hms, there was about 7 in the group meg was on but the groups overlap so the second week ther will be diffrent kids there who will just be starting threir 2 weeks.
as sue said the course is hard work and it is only 2 weeks so you cant expect mirical but they do there best, they will do a inital assment of your daughter on the ward and then reasses her on the day you leave and rate her muscle strength on both occasions to see how they have improved, the real hard work is when you get home and ytou have to keep up the physio 5 days a week.
from our point of veiw the coures was very benifical, and well worth doing and through the coure we made some fantastic friends who we keep in close contact with now and are going to be visiting so smiles all round.

one note to the wise the smoke alarms in weston house are SUPER sensative, avoid toast at all costs we did! even hair dryers, air gun toys and steam from the bath have been known to set them off on a regular basis. put it this was i always made sure i had my pjs and dressing gown handy of a morning and evening!!!

Re: Anyone going to GOSH 2 week physio end of April?

Postby rainbow » Tue Apr 14, 2009 9:06 pm

Hi Ali

Thanks for replying again, i am glad that it has helped Megan and it is great you have made some good friends, i hope we will too. I will try and plan a few visits to places to encourage Hannah but i will be prepared for her to be worn out!
I think you are right about the hard work when we get home, i know we struggle at the moment with the few excercises she has i think we need to get into a routine as a family to help her with the exercises when we are home. I find it hard because she is so tired after school and to be honest i work and also get very tired so it is too easy to let it go but i am determined not to waste this chance we have to help her so i will try very hard.
Thanks for the tip about the smoke alarms! Do they march you all out of the building then? Day or night? I better take my dressing gown!


Re: Anyone going to GOSH 2 week physio end of April?

Postby alison1984 » Tue Apr 14, 2009 10:59 pm

every one is only given 4 exercises to do at home with weight as specified after the physio, they say you shoul at the start of the week let the children choose which 2 days off a week they have which has helped meg as she feels its up to her when she does it, she now uses theraputty which is fab for her hand as just sits and plays with it whilst watchig tv.
we as a family do the exersises just b4 bed time and have made it part of the routine, we use rewards and find being able to go to bed straight after helps her as she knows she will be able to rest we also find doing them then that they dont get missed.
the smoke alarms!!! well we were lucky but yes when they go off you are marched out the buildingand to the park at the end of great ormond street, so yes dressing gown advised lol!
oh by the way there is free internet acsess too in the canteen if you wanted it, also the activity center is good in the hospital if the weather is rubbish, they have celebrities go in and do things with the kids, the week we left they had animals from london zoo going in.
hope you get on ok im sure you will, and that you find it of some help, if you want to know anything else then let me know.

Re: Anyone going to GOSH 2 week physio end of April?

Postby rainbow » Thu Apr 16, 2009 4:28 pm

Hi Ali

Thanks for the tips about the excercises that sounds like a good plan i will try and do the same before bed. Where do you get the putty for their hands? That sounds good Hannah has a lot of pain in her hands. I'm hoping we don't have the smoke alarms going off, i will let you know!


Re: Anyone going to GOSH 2 week physio end of April?

Postby alison1984 » Thu Apr 16, 2009 7:28 pm

we got our theraputty from a mobility shop and most of them if they dont have it they will order it in ours was £3.50 a pot, but really good and megan loves playing with it when say in front of the telly or when having story time, we bought extra pots for nursery/school too so she can use it there too.
i does come in diffrent strengths, and you will be told after the physio course which to buy megan has soft-medium.

Re: Anyone going to GOSH 2 week physio end of April?

Postby rainbow » Sun Apr 19, 2009 11:09 am

Thanks for that i will ask them which one to buy and get her some. That is a good idea to get some for school too , her school have been really helpful so far so i am sure they will work with her on that. Well, one more week to wait then we will be there! Hannah is getting a bit nervous now i am trying to encourage her to try and make the most of it and enjoy it.


Re: Anyone going to GOSH 2 week physio end of April?

Postby alison1984 » Sun Apr 19, 2009 8:32 pm

tell her she will be fine, my megan hates leaving me even to go to nursery but she loved physio sessions, all the kids help each other and support each other loads the physios are really nice too and super friendly with the kids, she will enjoy it im sure and in the prosess get to meet others that understand her and her hms which i think is invaluable to kids
good luck and let me know how it all goes

Re: Anyone going to GOSH 2 week physio end of April?

Postby rainbow » Mon Apr 20, 2009 4:05 pm

Thanks for that Ali, i will tell her. You are right it will be good for her to meet other kids with similar problems. She is starting to feel different and to realise that other people can do things without pain all the time. I will let you know how we get on.

Jo x

Re: Anyone going to GOSH 2 week physio end of April?

Postby pinkiepunksmummy » Wed Apr 29, 2009 1:02 am

Hi all...just wondering, do children HAVE to attend the hospital school while on the physio course??
My children are home-educated, so are not used to the actual school setting.... Also, what kind of things do they do while there? Is it just like school, or is it more relaxed??
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Re: Anyone going to GOSH 2 week physio end of April?

Postby Livsmum » Thu Apr 30, 2009 7:25 pm


Ali, we have the dates confirmed for the next 2 weeks, 17th August.

I think everything has been covered, apart from the local shops, there are tesco expresses, sainsburys and a waitrose in walking distance, so you don't need to take too much stuff with you.

School age kids do have to go to school, Olivia is only 2, so she didn't go, but from what i can gather it's nothing too heavy, just sitting around a table doing things. One person made an egyptian mummy out of playdough wrapped in cloth and tided with string! I think they try to stick with topics on the national ciriculum for each age group. Most of the kids said it was boring! :roll:

2 weeks in July

Postby muppet » Wed Jun 10, 2009 9:19 pm


Is anyone doing the two weeks rehab starting 13th July?
This will be the second time my 7 year old has done it and am just wondering if anyone else is about at that time.


Re: 2 weeks in July

Postby nonyanomemory » Fri Jun 12, 2009 2:31 am

hi helen,
Mine are all grown up now I just wanted to wish your seven year old the very best for the forthcoming rehab.
46yr female EDS H/mobility Type c/over vascular Dxd Prf G
V Prem club ft short stature early onset varicose veins thin skin
Striae o'rthritis/porosis PHN POTS spasms n'pathic pn IBS bladder stuff bulging discs & more!

d/tr severe EDS 20 yr
Carpal tunnel
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June 24 - and has anyone met Dr P*********?

Postby Alison C » Fri Jun 12, 2009 6:18 pm


Will anyone be at GOSH oupts in the afternoon? We have just had our reminder and Sue's clinic is now called Dr P********* clinic. I phoned Appts and they said this is still Sue's clinic - phew! - has anyone met Dr P?

Alison C
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Joined: Fri Oct 03, 2003 12:33 pm
Location: UK

Re: June 24 - and has anyone met Dr P*********?

Postby MandyG » Sat Jun 13, 2009 9:40 am

Hiya alison

originally we had a letter for sue's clinic then like you we got a reminder letter for Dr P's clinic.

when we got there it was sue. although sue and ellie (one of other physio's) had been fighting over who got to see my rebecca lol, sue won though

good luck with it

Mandy - DX EDS III by prof G June 2009
mum to Rachel 9-DX EDS III by prof G June 2009
Rebecca, 6, DX EDS III nov 2008, GDD, selective mutism, PDA
Charlotte 3- EDS III DX 2010
Louie 2- showing signs
Also carer to my husband who has narcolepsy + cataplexy
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