Dated 31st July 2011
1. DMD Clinic:
A multi-disciplinary DMD clinic was started in August 2008 at Kanchi KamaKoti CHILDS Trust Hospital for the benefot of all the MDA India families. This was conducted every month on a Sunday, to make it convenient for the children and their parents to bring their children over. On this day every child was seen by a team of personnel including Neurologist, Cardiologist, Pulmonologist, Orthopaedic surgeon, Paediatrician, Physiotherapist and Dietician.
In this clinic, every child undergo a general health check up and enrolment which is done by paediatrician, complete neurological assessment by neurologist, complete cardiac work-up including echo and ECG was done by cardiologist, lung function assessment and muscle strength assessment done by physiotherapist, based on lung function test pulmonologist will do his assessment and give his advice. Orthopaedic surgeon will examine the children and advice for surgery or aids based on the patient's requirement. Dietician will give the appropriate dietary advice for the children.
So far 65 children have benefited from this clinic and we hope to continue this on a regular basis over the next few years with regular follow up assessments.
Personnel Involved in the multidisciplinary DMD Clinic were:
2. Influenza virus vaccination program:
DMD children are in the high-risk group for respiratory tract infections as their breathing muscles including the diaphragm and the chest wall muscles are weak. Therefore if they develop respiratory infections it becomes quite severe and life threatening at times. Though there are many causes for respiratory tract infections, the commonest is the Influenza virus. This is preventable by using the vaccinations. But it is an expensive vaccine and many of the families were finding it difficult to afford it. So we embarked on the idea of buying this vaccine in bulk and providing it free of costs to all members of the MDA India and others who needed it.
So far 75 children have benefited from the vaccination program this year and we hope to continue this every year well before the rains begin. The cost of each dose of vaccine at around Rs.600 per dose.
3. Muscle biopsy and DNA Analysis:
Muscle biopsy and DNA analysis are the diagnostic tests for confirming DMD. Some children who needed muscle biopsy or the DNA analysis for diagnostic confirmation were helped by MDA India for getting free testing done or were paid for by MDA India, when the families could not afford the tests. Presently histo-pathology laboratory facilities at Kanchi Kamakoti CHILDS Trust Hospital is being upgraded with all the necessary equipments so that routine histology and immuno-cyto-chemistry testing may be performed here itself in the future. These tests and biopsy to be performed under anaesthesia costs around Rs.10,000 per child.
4. Incentive spirometer:
DMD children will have difficulty in breathing as they grow older and their lung function will come down due to weakness in the chest wall muscles and diaphragm. This could be delayed by quite a bit by regular use of incentive spirometers. Therefore around 70 children were given incentive spirometers free of cost by the MDA India. Most families appreciated this gesture as the children enjoyed using them and found it very simple and useful. Our pulmonologist and physiotherapist demonstrated to our families the method of using them. These were handed over the commissioner of Corporation of Chennai – Mr.Rajesh Lakhoni at a small function at Kanchi kamakoti CHILDS Trust Hospital on the 31st Aug 2008. Each of the incentive spirometer costs around Rs.200 per piece.
5. Acapella cough assist devices:
These are imported devices used to help children who develop early signs of breathing compromise to help bring out the mucus and assist in breathing freely. Very useful in children with DMD. The main limiting factor again is the cost as each of these cost around Rs.3900. This year we managed to provide five numbers of these cough assist devises free to the needy families and only hope that we can provide more of these in the future.
6. Non invasive ventilation:
DMD children will have difficulty in breathing as they cross 12 years due to weakness of the respiratory muscles. Hence they will have increased work of breathing. This is the time when non invasive ventilation comes to rescue of such kids. MDAI have sponsored the BiPAP machine to Md.Usman, a 16 year old boy who was in need of this machine but could not afford buying this. We are grateful to Mr.Kalyanaraman who immediately came forward to donate the money needed to buy this machine for Md.Usman. Thankfully Md.Usman is doing well and is using this regularly at home, particularly when he goes to sleep. By the time children with DMD get to the age of 17 or 18 they invariably require respiratory support particularly at night. Each of these machines cost around Rs.1 Lakh.
7. Home ventilator:
Children with DMD get weaker as years go by and develop severe respiratory compromise and need ventilation using a machine to help them survive. We have therefore purchased a ventilator from Mr.Rajendran who got this for his son Master Yuvanesh a child with DMD. Mast.Yuvanesh unfortunately died due to respiratory failure at Erode (Tamilnadu). Presently this ventilator is on stand by for anyone who may require it. We will be providing this free to the family. Each of these ventilator machines cost around Rs. 2.5 Lakhs.
8. Wheel chairs:
Most of the children with DMD will not be able to walk after 12 years since their lower limb muscles become weak. So these children require wheel chairs both for mobility inside their home and outside. It also becomes mandatory that these wheel chairs are custom made for the child and is as comfortable for the child as possible as they spend long hours on these wheel chairs. Custom made wheel chairs are currently being made by an NGO by name WORTH TRUST for us but still each of these wheel chairs cost around Rs.6000 on an average.
FREE MASSONS club – Lodge Ashoka have helped us in big way during the year 2008 by providing all the financial assistance needed for the manufacture, purchase and distribution of around 20 wheel chairs. We in MDA India remain grateful to them and hope that they will continue to assist us in the coming years too.
DMD children will be having toe walking due the contracture in calf muscle. To maintain the normal position of the foot, these kids need splints. Again this has to be made for individual specifications. Free Masons Club – Lodge Ashoka and others have kindly sponsored a good number of these and have been handed over to the families. Each of these splints cost around Rs.700.
'Happiness is contagious. By giving, we receive'
Research Center for Genetic Medicine at the Children's National Medical Center (CNMC)
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