GOSH Information needed

[sandy34]

Mod edit - Title changed and bumped up to sticky to generate replies for Mutley3 - Site Admin

how long does it take for them to send you the consultants report.its about 5-6 wks since our daughter went to see dr Nathan Hasson

sandy

[sarahh]

Hi Sandy

It depends on how quite the consultants secretary can turn letters around and send them out and how many clinics they do a week. I would have probably thought your gp should have had a letter by now and if not ask if they can get a copy of the letter faxed through.

Sarah x

[mutley3]

Hi Sandy,

I'm really sorry to bother you but wondered if you could help. My 6 year old daughter is hopefully seeing Dr. Nathan Hassono on Monday (privately which is killing me financially) as the paeds won't refer on NHS.

I know it was a while ago but did a search for his name and found your post. Was he nice and understanding?

I do hope you're all well. Emily & i have EDS Type III. It's a nightmare isn't it.

Best Wishes
Sarah

[popsmum]

hey everyone, pops has eds diagnosed at gosh, whom shes under for endo, gastro etc, we'v not been made a appt at gosh for rheaumy or anything juts for our normal cons, and i was wonderng how we get poppy under the clininc, and also wanted to know about the physio course, i mean is thier a age that she has to be, what happens at these courses? how does the day go, how strenous is it? do you have to be walking to do it etc......i geuss we can ask our gastro dr to ref to the clinic maybe, or is it just because shes to young, as physio say shes too young for structured physio. kim xx

[alison1984]

my daughter has been under GOSH since she was 2, we had 18 months of gentel physio exercises for her to do at home to see if they helped any, well they didnt and infact her joints have got worse, in december we went back to see sue @ GOSH and she has put megan on the 2 week physio course this march (she will be 4), the physio done there is done in a group where parents drop the kids off then pick them up later, they do 2 sessions of about 2 hours a day 1 in the morning and 1 in the afternoon and this is done every day monday to friday, so the weekend is yours to do as you please. the first monday instead of physio there is a assesment and time is also allocated over the 2 weeks for if the children need to see any other specialists whilst there.
GOSH will arrange for you and your child to stay at the patient hotel close to GOSH so u are able to get there each day they also give food vouchers worth £8 per day for each child on the course.
i cant comment on the actuall course itself as we have not been yet all of this is just info sent to us through the post the other day prior to megans admission.
hope this is of some help
with megans physio when she was less understanding we got her into watching lazy town, then after made out she was stephanie from the show and one of us was sporticus and she had to copy what we did, then she could have some sports candy!!!! may sound daught but we found it a brilliant way to get meg to exercise with out realising she was doing it, and at the same time getting her to eat fruit!!!

[popsmum]

thanks hun, well i geuss pops a bit young for that then, plus shes attached to a feedingpump 24hrs a day so w couldnt leave her......and she'd scream blue murder too lol!!! cant go a loo without her sreaming!!

thanks, just getting bit desperate now, xxx

[alison1984]

the other thing that sue @ GOSH offered to do was to refer us to our local physio team, but she would work side by side in advising them what was sutiable and what wasnt, maybe this option would be more sutiable for your little one under the circumstances.

[barkingmad]

Prof G offered S's services for guidance to my eldest son's local physio's too, she is really good and her advice is great. It also made me feel more comfortable because when I could see things going wrong I asked them to phone her, so I knew he was being properly monitored, albeit from a distance.

[popsmum]

hey poppsy under our local physo and always has been, she has gross motor delay, and also for the eds too, but i was juts wondering, im always wondering, trying to think of how to do more to help her if you know what i mean. feel lke its all i do these days lol! kim x