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Hi my daughter's paed dr made a referal for her to have some botox in a hospital which is out of the area where we live. Our PCT has refused because they have a contract with a hospital nearer. I don't want to use this hospital as prefer the other (various reasons). I thought that under the Patients Charter you could now choose where you have treatment. Does anyone have any information on this?
Sorry, no idea about choosing hospitals but we have had excellent results from Botox so it's probably worth the fight.
Thanks HM can I ask what your experience of botox has been and did the Hospital use ultrasound?
We Ds is now 4.7 and had his fist botox when just over 18 months ago, in that time we have had 3 doses. The first time they did his calf muscles, hamstrings and one side of his groin. This had an amazing effect, it completely stopped the scissoring which was beginning to be a problem but mostly it just gave him an amazing sense of awareness of his legs and that they were under his control. The look on his face as he sat there experimenting with moving his legs was fabulous!
About 6 months later we did calves and hamstrings again to try and get the heels flat, this really had no effect, I could feel the looseness of the muscles for a few months but we couldn't build on it to any degree. The third time in about April this year we did calves only followed by 2 weeks in boot plaster casts. This got him walking! the casts really gave his tendons and muscles a good stretch and bought the heels down enough for him to start taking steps. The effect of the botox has now worn off but the long term effects have continued. We were going to do another lot about now but feel he needs to settle fully into school first, we have an appt with ortho in Nov and I expect it will happen in Jan.
We have been very lucky in having a good ortho and a great physio. The physio afterwards is what makes the difference and it was DS1's reluctance to do any after the second lot of botox that meant that it was ineffective. Our old ortho has left and our new one is not a paediatric specialist and I have a few problems with that but in all honesty I trust the team of physio's better. I will let this Dr do botox but when the time comes for surgery I will be looking elsewhere!
I don't think that there has ever been ultrasound involved? In what way do you mean? For positioning the injection or from a therapy point of view? DS has always had a light GA for the injections as obviously he needs to be still and the needles are quite big!
Sorry this has turned into quite an essay, but hope it helps.
Thanks HM and pleased that you have had such good results. The hospital I want my daughter to have the botox injections use ultrasound to accurately pin point the muscles which need injecting and also offer intensive physiotherapy afterwards. Using both, they have achieved high quality results which is why I want her to go there.
Agree with HM that botox is worth fighting for. DD1 has had a lot over the past 5 or 6 years. Saw an Orthopaedic Surgeon yesterday, who is going to give her some more in her lower legs in the vey near future, we are just waiting for the date now. Done with injections under a quick GA.
Thanks everyone for your replies - it has made me put pen to paper and I have written to our PCT. Fingers crossed - why does everything have to be a battle!
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