Summary: The UDAAN Multimode Early
Medical Intervention Therapy Project for CP is an innovative concept, that
requires many years of follow up before we know how effective it can be.
However, someone somewhere has to make a start, or else we will forever condemn
children with neurodevelopmental disabilities into a pit of despair and
hopelessness. Last updated January 21, 2007
FAQs on UDAAN Multimode Therapy
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Based on the talks during our first workshop on UDAAN Multimode Early Medical Intervention Therapy for Cerebral Palsy, on October 1, 2000, at the Convention Center of Hamdard University, New Delhi, by various medical / surgical specialists.
Table
of Contents
- How do I know whether my
child is disabled?
- How can I be sure of the
proper diagnosis?
- Why doesn't someone
offer hope for cure of my child's disability?
- What is multimode
therapy for cerebral palsy?
- When is it to be used?
- How safe is Hyperbaric
oxygen therapy for my child?
- How safe is Botox
injection for my child
- How safe is Reflexology
for my child?
- How safe is Acupuncture
for my child?
- How safe is Unani
medication for my child?
- How safe is surgical
corrections for my child?
- How safe is selective
dorsal rhizotomy for my child?
- What is
regenerative Medicine
1.How do I know whether my child is disabled?
It is today possible for an alert Pediatric Neurologist or Rehabilitation / Physiotherapy Specialist to diagnose a Neurodevelopmental disability soon after birth. However, since these disabilities are not taken seriously till too late in most towns, and passed off as "weakness" that will settle with time, be careful!!! If you have any doubt that your child is not keeping up in Neurodevelopmental progress as compared to a similar aged child of a neighbor, GO TO A METRO TOWN, and show your child to a pediatric neurologist, or Rehabilitation Department of the premier Medical College or the local Spastic Society. You are likely to get a better diagnosis there.
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2.How can I be sure of the diagnosis?
Modern diagnostic tools will come to your rescue. These include an alert specialist using standard means (OK for 75% cases) supplemented by SPECT scan, to delineate the extent of neurological damage, and presence of recoverable penumbra of ischemic brain tissue that could recover with timely HBOT.
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3.Why doesn't someone offer me hope for my child's
disability?
Because that is the situation as of today. We do have the means to control further deformities, weaknesses and disabilities caused by the non-progressive birth trauma damage, with the help of standard physiotherapy, rehabilitation therapy, occupational therapy, speech therapy, behavior modifications, ADL training, and integration with normal children. But, the original Neurodevelopmental disability remains as a permanent birth damage.
We at UDAAN are going to try, for the first time in the India, to offer a package of experimental therapies as a sequential therapy spread over eight months, to see if we can make the slightest dent in the original definition of CP as a "non-progressive" Neurodevelopmental disability. However, we ourselves will not know the answer before at least 5 to 10 years of follow up. But then, someone, somewhere, has to make an attempt to start.
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4.What is multimode therapy of cerebral palsy?
All centers for helping children with cerebral palsy, and that includes UDAAN, have on offer standard physiotherapy, rehabilitation therapy, occupational therapy, speech therapy, behavior modifications, ADL training, etc.
In addition, UDAAN offers on a voluntary basis (i.e. only if the informed and intelligent parent requests in writing) the following ADDITIONAL Multiple Modes of Therapy provided we assess that the child has a chance of benefiting from it on theoretical grounds:
- Hyperbaric
Oxygen Therapy - 40 sessions,
- CP Specific
Acupuncture - to relieve pain and enhance Neuro-muscular recovery and
control
- Unani
Neuro-restorative herbal nutritional supplements
- Computer
Assisted Biofeedback provided IQ is at least that of a 4 year old child
- Surgical /
orthopedic corrective surgery for intractable contractures / spasm
- Botulinum
Injection or Phenol Block Therapy only if very necessary
Proof of benefit: The child with Neurodevelopmental disability is born with a certain brain damage, which causes a certain permanent neurological defect in the corresponding part of the body innervated by nerves from that area of brain, as a result of which the affected limb / muscles / organs undergo gradually progressive atrophy and degeneration and deformity. Though the body seems to be getting worse, the original brain/nerve defect is said to be "Non-Progressive". Now, if Multimode Therapy succeeds and we are able to reverse / recover some of the penumbra of ischemic and injured brain tissue, then the neurological defects in the corresponding parts of the body innervated must also recover permanently. THAT IS WHAT WE WILL TRY TO OBSERVE OVER THE 5 TO 10 YEARS OF FOLLOW UP IN CHILDREN (BELOW 4 YEARS OF AGE) GIVEN UDAAN MULTIMODE THERAPY FOR SIX MONTHS FOLLOWED BY PERMANENT STANDARD THERAPY AD INFINITUM.
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5.When is it to be used?
Different modes of Multimode Therapy are applicable to various age groups.
- Hyperbaric
oxygen and Unani Neuro-restorative supplements can work only if there is
salvageable brain in the form of a penumbra of ischemic tissue. Hence
these two modes would work in children below the age of about 4 to 5
years, before the penumbra undergoes Leukodystrophy or permanent
degeneration.
- Acupuncture
relieves pain while Reflexology relaxes muscles. Hence they could help in
better physiotherapy exercises in any child of any age with spastic
muscles.
- Computer
Assisted Biofeedback or Operant Conditioning teaches the extra redundant
nerve cells (which usually remain functionless and dormant throughout
life) to take over the work and function of damaged brain cells. This
therapy may be initiated any time after brain injury, with no time limit.
- Surgical
corrections are meant to restore the degree of movement in a limb that has
undergone fixed bend at a joint due to permanently shortened muscles and
tendons due to disuse atrophy. The opposing groups of muscles must retain
some degree of control for this mode to be useful.
- Botox /
Phenol Nerve block works in spastic muscles, not in muscles that have
atrophied and become converted to fibrous scar tissue. Hence it could work
in small children below 4-5 years, if they have spastic but viable
muscles. However, it MUST be followed up by intensive OT/PT to make the
weaker muscle so strong that it would be able to counter the spasm when
the muscle/nerve injected restores its spasticity after 4 to 8 months.
Unfortunately, the relief of these injections is so rapid and magical.,
that the child and parent almost always begins to take it easy, causing a
relapse within a few months and with all that money gone down the drain.
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6. How safe is Hyperbaric Oxygen Therapy for my child?
HBOT is a > 50 year old technique, and its safety parameters, dosages, applications are well established. In the patient who is not claustrophobic, has normal ear/nose function, and other medical parameters as given elsewhere , it is a safe procedure.
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7. How safe is Botox Injection for my child ?
Botulinum toxin therapy is a relatively new science to cause conditional paralysis of excessively spastic muscles. It may cause allergy and associated problems in the short run, and undue weakness in the long term. Both of these are generally reversible with time. Due to the inherent procedures and cautions, this mode is only applied under full care in teaching institutions and similar well equipped hospitals, by trained staff, in well selected patients, and carefully chosen injection sites. Under these circumstances, it is a safe procedure for all age groups.
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8. How safe is Reflexology for my child ?
Reflexology is a multi-millennium year old technique, which is non-invasive, and completely safe at any age group. However, it is not yet a regular feature of Multimode Therapy, due to non-availability of expertise and recorded evidence of benefit.
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9. How safe is Acupuncture for my child ?
Acupuncture is a multi-millennium year old technique, which is invasive. Hence its safety depends on aseptic and antiseptic techniques, and careful selection of insertion points. As such the technique is safe in all age groups. Electrical stimulus augmented acupuncture is to be used with caution in patients with cardiac problems, and pacemaker use..
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10. How safe is Unani Medication for my child ?
Unani medication, as of today, is a judicious mixture of Indian Ayurveda and Persian Unani medicine. It is based on observed effects of natural ingredients, and about two thousand or more years of experience. Their hallmark is that they are generally safe when well prepared according to ancient methods and precautions. They are of two types: local poultices and oral drugs. The former is without side effects except self limiting local intolerance or allergy rarely, while the oral medication is also quite safe. However, it is usually prescribed along with stringent dietary restrictions and rules, that sometime are difficult to follow under certain conditions of home atmosphere. The supplement used by us is purely herbal, based on established herbs.
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11. How safe is surgical corrections for my child ?
All surgeries are by nature invasive procedures and a 0.5% surgical risk is always inherent. They can cause excessive scar, contracture relapse in long run, risk of infection, and inadequate correction requiring a repeat correction in later years. They are therefore to be given by well experienced surgeons dealing with CP, and who understand the inherent muscle weakness and in-coordination that the child already has, and makes allowances for them while deciding his surgery. He must have a team of physiotherapists and others to take over when the surgery has healed, other wise the contractures may relapse.
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12. How safe is selective dorsal rhozotomy for my child ?
Selective Dorsal Rhizotomy is an irreversible surgical procedure. All surgeries are by nature invasive procedures and a 0.5% surgical risk is always inherent. This operation can cause risk of infection, and inadequate correction requiring a repeat correction in later years. Over-correction can also cause permanent weakness in the supplied limb. They are therefore to be given by well experienced surgeons dealing with CP, and who understand the inherent muscle weakness and in-coordination that the child already has, and makes allowances for them while deciding his surgery. He must have a team of physiotherapists and others to take over when the surgery has healed, other wise
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