Hospital Visits
Standardised care
When your son is diagnosed with DMD he will be referred to a particular muscle centre - usually whichever is closest to your home. The standard of care, service and information can vary enormously from centre to centre. It is a sad fact that at present there is no standardised care for our sons - something we should fight for.
Consultant meetings
Meetings with the consultant can often be daunting as sometimes there are many medical staff present. Also meetings only occur every 6 months and this puts pressure on families to make sure every concern they have is discussed. It is important to go to these meetings "armed" both with questions and information. Before you go talk to other parents who have boys with DMD to check any issues they might feel to be important. Also keeping abreast of current research using our web-pages or other information is important for these meetings as you may well wish to discuss such things as the use of steroids for your son. Many doctors say that parents become more expert than them and we have to be! Make sure you don�t leave that hospital until you have discussed everything you want to, regardless of how unimportant you may feel it to be or how the doctor reacts.
Some questions you might want to ask:
1) Is his muscle strength weakening?
2) How are you measuring his muscle strength?
3) Do we have regular physiotherapist assessments?
4) What physical stretches should we be doing to help to stop contractures?
5) Should my son be taking steroids for DMD?
6) What are the side effects of taking steroids?
7) Which steroid do you recommend and what dose would he be taking?
8) If he is taking steroids will you be checking his weight, eyes( for cataracts), and bones (bone density)?
9) Can you check and monitor his heart function?
10) For older boys we should be asking for night ventilation equipment to assist with breathing.