09
Feb
2008
Newcastle muscle clinic have now issued the following protocol for those with BDMD and on long term steroid use
NEWCASTLE UPON TYNE HOSPITALS NHS TRUSTProphylaxis of steroid-induced osteoporosis in Duchenne Muscular Dystrophy (DMD) • All DMD children should be offered treatment to prevent osteoporosis when they are started on glucocorticoids
• Recommended treatment regimen:
- 6 days per week: Calcichew D3 forte, one tablet daily
- 1 day per week: 35mg of risedronate (one 35mg tablet)
Children less than 20 kg in weight should receive a reduced dose (approximately 1mg/kg) but this will involve taking 3 or 4 of the 5mg risedronate tablets. This may be feasible for some children but not necessarily everyone.
Important instructions for taking risedronate: • Swallow Risedronate tablets whole (not crushed or chewed - unless swallowing difficulties - see below) with a large glass of water, on an empty stomach (at least 30 minutes before breakfast or the first drink of the day). Sit or stand upright for at least 30 minutes – do not lie in bed. • If you take Risedronate at any other time of the day, avoid food and drink for at least two hours before and two hours after each dose. You should also avoid milk, any drinks containing milk, iron supplements, mineral supplements and indigestion remedies during this four hour period. • Never take Risedronate tablets at bedtime or before getting out of bed in the morning. Instructions for use if tablet swallowing is a problem - Disperse each 5mg tablet required in 25ml of tap water and take immediately. For example if 15mg is required, disperse in 75ml of tap water.
- Do not crush the tablet; it will readily disperse in the water.
Side effects: Upper GI disturbance is common with risedronate (which is why they should not be taken lying down). People can feel nauseated for a few hour afterwards. Other side-effects are less common.
Alternatives to Calcichew D3 forte • Cacit D3 one tablet daily (not on trust formulary) is an effervescent formula with close to the same formulation as Calcichew D3.
• For calcium alone Sandocal 400 (effervescent calcium 400 mg), one tablet daily • For vitamin D; ~Ergocalciferol (or Cholecalciferol) 400 IU daily
Children should usually remain on risedronate whilst on steroids although if lumbar BMD is within normal limits some clinicians would suggest a drug holiday – duration determined by subsequent BMD assessments.
23
Nov
2007
Do you ever get the feeling that everything is just getting too much? Do you ever feel it would be great to just roll up into a ball under a duvet? Do you ever want to run away and just keep going like Forest Gump? Do you ever resent what is happening to you and your family? Do you ever get overwhelmed by it all and feel you can't cope anymore?
You do!! Wow I'm not on my own then, others feel exactly as I do. I believe no matter how positive a person you are, no matter how proactive in the search for the cure of DMD you are, or how much help you have around you all these feelings seem to sneak to the surface now and again,of course we feel guilty because we feel that by doing so we are letting our children down or not being strong enough for the family.I sometimes look at my children and feel very myself getting very emotional as I watch how my son and daughter interact, the obvious deep love they have for each other, wonder how she would cope if something should happen to her big brother, I look into my wife's eyes when she talks about our son and see a sudden sparkle of love and pride but at the same time , if you look deep enough, a look of worry and despair.
We all have those feelings but I believe it is how we cope that matters,they can either overwhelm us and run our lives or we can have our dark moments take a deep breath and come out of the other end even more determined, live life to the full with fun,living for the moment we are in and not how we believe the future is going to treat us and our children, of course we have to consider the future that is why I feel it is important to hold people to account, force the issue of DMD onto the politicians make them aware and invest in our children,also to have researchers who deliver on the promises of years of research and funding from people like us! I know for me being involved in 'Action Duchenne' helps me cope,'however' it can also be very frustrating at times!! it is very hard to keep yourself from strangling someone who you feel is being insensitive or not listening or you feel the injustice of wasting £12bn on a computer system that doesn't work or nobody wants and we fight tooth and nail for 3 years to get £2.6m and still don't have the promise of funding for MDEX after 2008.
As my heading implies if we give into the feelings of despair,sit on our hands, do nothing and feel sorry for ourselves then the horror of Duchenne has won,for me the fight has got to be fought (and won) I will no more standby and watch my son go through his life without helping and fighting, than I would walk down a river bank and watch my son or daughter drown after falling into the water...as my heading says
'Life may suck but the alternative is unacceptable' a personal view by:
Paul
12
Nov
2007
When our children are diagnosed with DMD there seems to be a never ending list of hospital appointments for a never ending list of associated problems, Scoliosis, Dexa Scans, muscle strength, eye testing, physio etc. and then we have to make decisions on things like Steroids,Supplements,surgery,educational statements etc. etc. very little in our daily life seems to be spontaneous or off the cuff, all we do is planned to the last detail, are there disabled toilets? Is there good access? Is there a lift? Are there steps? you get the picture and I am not here to teach anyone to suck eggs, so I intend to make my first posting a 'Positive one' something we can cheer about for once!
I would like to introduce you to Charlie, he has just past his second birthday has endless energy, never stops running around and given the chance would eat anything and everything he sets his eyes on and is not to be ignored,so who is this madman? Well he is our sons 'assistance dog' a beautiful chocolate labrador who's only happy when he is with Josh on a walk around the woods or going to the shops with his mate! or helping him take his coat or socks off, picking things up when he drops them (usually the TV remote) or just being there doing nothing.
We applied to Dogs for the disabled nearly two years ago and forgot all about it with so many things going on in our lives. Then out of the blue we got a letter saying they wanted us to go to Wakefield as Josh was being considered along with five other children for a dog.We arrived on the given day nervous and a little apprehensive about what was going to happen and thought the odds were against us.We all went into this room with several other children with different disabilities and needs, the staff had a chat with us all as a group and then brought in a couple of beautiful dogs for the children to see, you should have seen the look in the kids eyes (and adults).One of the dogs made a bee line for Josh and seemed to have an instant bond,then they left and we went into a room for a private interview,we were asked questions on our thoughts on how our son would benefit from having a dog and how Josh thought it would help.It seemed to go on for ages,ever present in our minds was the thought 'have we said the right things' at the end of the day we went home not knowing the outcome but with fingers crossed telling Josh not to get his hopes up in case he was not selected and also in the knowledge someone would have to be disapointed.A couple of weeks later we had a home visit to see if our home was suitable and yet another grilling ( not really but felt like it) still no inclination if he had been successful or not, later we received a letter saying we had passed the initial stages and just needed to get a letter from his doctor saying Josh was capable to look after a dog ( bearing in mind his disability and progression) and he did not have any medical conditions like Asthma that could be made worse.
Then out of the blue we got a call saying they had a dog for Josh and his name was Charlie the very dog that had made a bee line for him at the very first meeting and would Josh want him? well the answer was a resounding yes and a few tears of delight from us all.
Then the hard work began!! Josh and my wife Gail started a training course lasting a couple of months two or three days a week with Charlie and his trainer Louis on how to control him,look after him including daily grooming and teeth cleaning.Every so often they had practical tests and written ones which they had to pass(child and parent work as a team) and they had a final exam by the head of team training from their head office in Oxford (they passed with flying colours) and Charlie was allowed to spend the weekend with us but as it turned out stayed all the time after that.
Conclusion: What a difference Charlie has made to Josh,his confidence has gone through the roof he has a companion that doesn't see his disability but a friend...and I beleive most of all our son now has someone he looks after and not the other way around! So in my opinion if you get the chance 'go for it' the change for us was dramatic.
I said this posting was going to be competely positive and it is!! All the children that went to the meeting eventually received a dog and nobody had to be disapointed ' a good result all round'
Paul
www.dogsforthedisabled.org
Dogs for the Disabled,
Frances Hay Centre,
Blacklocks Hill,
Banbury Oxon,
OX17 2BS
Phone: 01295-252600
