Treatment of contractures at the age of 21

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Patient is my sister.

Her medical history is as follows:

- Normal Birth , jaundice after two days which stayed for 15-20 days

- Chest congestion also from 1-3 months

- Gained weight very slowly plus whole body had water blisters. Homeopathic medicine Calendox was a relief.

- Health got better in 4-5th month and started walking in the 11th month

- While walking, right foot and shoulder were slightly imbalanced but were not significantly noticeable , left eye stayed half open

We felt that something is wrong with her at the age of 12, when she started having very short term memory and her learning progress declined significantly.

- She suddenly had high fever accompanied with diarrhea.

- While walking she had no awareness of her feet placement.

- ECG and CT scan was done and reports were not okay.

- Her legs were affected initially then her brain.

- Allopathic doctors said that she will finish within 6 months therefore started homeopathic treatment but that could not fix her legs. Every year in summers the condition worsened and got stable in winters. After two years at the age of 14, she had her first seizures which were very severe. These were controlled with Rivotril. Also taking Cobolmin. It has been 5 years since these medicines have been started.

- During severe condition days whole body used to have infection which has black wound like spots all over the body starting from toe to face. Along with blisters which used to turn black and dissolve in the skin.

- Faced sleeping disorders in which she either used to sleep a lot or wont sleep for two days straight

- Even lost speech during severe conditions

Current Condition

- Seizures have stopped completely.

- Usually gets hyper.

- Height has increased a lot. Currently she is 5 ft 8 inches.

- Walks difficultly with the help of walker

- Brain has stopped at a certain level and is not developed as per her age.

- Has difficulty in speaking complete sentences with clarity.

- Feet has developed contractures due to lack of any physiotherapy. 

- Physiotherapy started two months, however therapist says that now it will only show 10-20% progress since the contractures have majorly developed and she is almost 21 years old now.

- Ankle foot Orthotics and knee immobilizer are also made to worn approximately 4-5 hours a day.

Need the best possible diagnosis for her contractures so that she is atleast able to do her work on her own.

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5 Replies

  • Posted

    Morning Minza;  I am teribly sorry that your sister, and your family, have had to witness and live with this for so long........however, it is too hard to give advice, as this is something that I feel you need to "go with ALL the medical advice" that is given.   I feel that this will depend on what country you live in, but do presume that the National Health Scheme of your country, would have an Extended Network of professionals (physios/occupational/social workers/) and Most of all     A very Good Orthopaedice Surgeon and Internal Physician, who will be able to give your sister the best of care....they are the ones with the knowledge..............Has your physio/GP suggested names of such; or given you Direction towards what is best for your sister?                     Bron
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    • Posted

      Hello Bron,

      Unfortunatey, I belong to a country where people's health is not a priority for the government. Government instituitions have a very casual behavior and private treatments are very expensive where consultation charges alone are heavy on the monthly budget. Her physiotherapist says that her condition is not completely curable. Over the years to come she will show only 10-20% progress. Therefore I want to know what more diagnosis are available for knee and foot contractures other than AFOs, knee immobilisers and regular physiotherapy.

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    • Posted

      Morning Minza;   it seems, as you say, if medical treatment is not upto the standard of our countries', and finances are limited, there probably isn't much that can be done, without Surgical Intervention???  have you ever been given an Actual Diagnosis.....the Black Spots/sores are what I am trying to understand?   Are they the Cause or symptoms of her Condition?   As for the contractures, other than Continual Physio, and use of Leg Braces/Orthotics etc (the physio regime is something that I presume you all have to help her wwith at home, on a regular, daily basis......something like 30 mins of exercising, with a break of 2-3 hours and then starting again?)......I have seen surgical intervention for the Releasing of the Ligaments, to reduce the Contracture (but this in itself is another additive for your sister, with family needing to continue the physio); and other times the use of Botox into the Muscles, to Weaken the muscle, allowing a little more use of same, but this, too, if not treated publicly by your Health System, can be an expensive procedure.....When you mention the lack of mental developement, is this due to the Hypoxia sustained during her seizures/from birth/disease process?......this Hypoxia is also a contributing factor to the Contractions  (you may have noted in Cerebral Palsy patients that they, too, have severe contractures of muscles in arms/legs etc)???   ......there is  a lot of questions that need to be answered/researched to give any form of guidance in your sister and family's situation......I'm assuming that you have researched all that is available in your country.............are you anywhere in Europe, that maybe even a trip across the Border into another adjacent country, where more Health care is provided, be an  option?.....I am trying to think of any info that maybe of help, but at present, have no more.....but would like to know re the Black spots (as I mentioned earlier....are they Symptoms, or a result of, an another underlying medical condition????    am thinking of you all..................Bron
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    • Posted

      Good Day Bron,

      Doctors had diagnosed Cerebral Atrophy, Cerebral Palsy and Congenital Muscular Atrophy. We belong to South Asia and we do not have finances to travel to any other country for her treatment. The black spots/sores are symptoms that indicate that the disease is gaining momentum inside her. They stopped after her seizures were diagnosed with Rivotril. Yes, lack of mental development was due to hypoxia that sustained from birth more likely. In her initial years of development we found her behaviour different from normal kids of her age, after her seizures this contributed to contractions. A point to mention here that her seizures were diagnosed at the age of 12 but her medication started at the age of 14. All the damage to the brain and body was done in these two years. She had severe seizures during that time, was completely on bed with loss of speech even. Botox treatment was not advised for her since it might reversibly cause weakness of muscles. Tendon lengthening surgery is advised, but they said it would be 20% effective. 

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    • Posted

      Morning Minza; yes, I've never seen much improvement with either treatment, as well................I hate to be honest, but I feel that the best that you and your family can do for your sister, is love and plenty of General Nursing  (turning her second hourly, keeping her clean, and continue with the Passive Physio....especially the Lung Percussion Therapy, to make sure that she is bringing up any fluid that accumulates in her lungs, to prevent Pnuemonia.....) as for her contractures, it seems that you have covered all avenues, that I know of, so the Physio on her legs/feet/arms etc are necessary, and wearing of her splints (with assurance of massaging areas to Increase blood supply to these areas, when Splints are taken off), are the best that can be hoped for at this point.    .......Have you tried writing to An International Medical Aid Society (such as Save the Children/Red Cross), as I know that these charities are sometimes able to raise the funds to bring children to Australia for necessary treatment.........perhaps if you try researching the web for such organizations, you may find an applicable organization who can will become an endless list of writing/requesting aid, but may prove beneficial in the long term????............will be thinking of you all, with hope.....(try Brisbane/Cairns hospitals/doctors)......Bron
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