MULTIMODE THERAPY FOR CP AT UDAAN

Sponsorships / Donations to be arranged for various therapies and check-ups at FSMHP-UDAAN for the Disabled, as on 6th February 2016

INTRODUCTION

Information regarding registration for Multimode Early Medical Intervention Therapy of small children with Cerebral Palsy / Autism Spectrum / Down Syndrome

  • UDAAN / INDIRA only agrees to make the MMT available WITH LEAST INCONVENIENCE TO THE PARENT, EITHER AT UDAAN OR INDIRA OR AT ASSOCIATED INSTITUTIONS.
  • We will work with parents and guardians to try to arrange sponsorships / donations / substantial concession / sponsorship, etc. as part of our Charitable Trust principles, as per economic standards of the parents, especially for Indian citizens resident in India
  • We will also assist in various logistical problems as far as we can.
  • The parent or legal guardian must choose to avail of the same by voluntary informed written consent.

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Duration of Therapy

That depends on therapy(ies) selected.

UDAAN MMT Timeline for CP Children:

cost

We recommend the following MMT for CP

  1. HBOT / mHBAT for 60 to 80 days, one or two sessions per working day, depending on severity of hypoxic/inflammatory damage seen on SPECT Hybrid Scan.
  2. Repetitive Transcranial Magnetic Stimulation (rTMS) to restore function in areas of bran contributing to loss of motor control, as well as some non-significant increase in Cognitive ability (a project under DBT, Govt, of India).
  3. Computer-assisted Neurofeedback to enhance concentration of mind and reduce attention deficit. (a project under DBT, Govt, of India).
  4. Standardized purified Brahmi supplement to enhance Cognitive skills (a project under CCRUM, Min. of Health, Govt, of India).
  5. Additional hyperbaric therapy of 40 sessions after 4th month if indicated.
  6. Intensive Standard Therapy for 8 months, daily except Sunday, second and last Saturday and Statutory Govt. notified Holidays. These additional Therapies include:

a)      Physiotherapy to mobilize joints and strengthen muscles

b)      Occupational Therapy to train correct mobility at joints

c)      Gait training to facilitate proper use of legs to walk better

d)     ADL training to teach activities of daily life, e.g., toilet training, feeding, dressing. undressing, etc.

e)      Speech Therapy for not only proper communication development but also exercises of larynx to palate to facilitate mouth activities like soft palate control, sucking, swallowing, saliva drooling control, phonation, etc.

f)       Special Education to teach capacity limited education, behavior control, daily living skills, socialization, group activities, etc..

g)      Sensory Integration Therapy in fully equipped Department, to reduce sensory issues.

h)      Arts and Crafts training to inculcate attention, eye-hand coordination, and to give expression and an outlet for their imagination.

  1. Corrective limb surgery whenever required for unmanageable contracture / deformity.
  2. Highly selected cases go in for Regenerative therapy.

OPD expenses for Children with Cerebral Palsy and Autism Spectrum Disorders

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OPD EXPENSES TO BE ARRANGED AS SPONSORSHIPS / DONATIONS UNDER SECTION 80-G OF THE IT ACT, for Children with special needs requiring therapy

Facilities Available

Remarks. For individual costs, speak to the Center-in-Charge on +19-11-41621137 during office hours of 10 am to 5 pm.

Registration

One time

Standard Assessment of CP Child

Physical, Mental, Speech & Language level assessment, SPECT Hybrid Scan of brain

Standard Assessment of ASD child

Physical including SI, Mental/Cognitive, Behavioural/Psychological, Speech & Language level assessment, Biomedical Testing as per need. SPECT Scan is done only when there is a suspicion of intra-uterine severe infection / trauma / labour / neonatal injury to the child’s brain.

Psychologists Assessment for ASD child

1st Visit: DSM-IV, CARS, VABS, Counselling
Revisit: CARS, VABS, Counselling

Medical Consultation

As per clinic and individual Doctor’s charges

Physical Therapy (OT, PT, SI, etc.)

As per therapies availed of, depending on need of a particular child, and duration of sessions required

Special Education

Speech & language Therapy

Dietician Counselling

SPECT Hybrid 3-D Scan of Brain
We strongly recommend a follow up 2nd SPECT Scan at 8th month

Rs.12,500/scan, as of now

Accommodation nearby on long term

Single unfurnished room with attached bath in nearby middle class area at a cost depending on standard of room, facilities, distance from UDAAN, type of locality. It could range from Rs.10000 or so per month, to higher end flats @ Rs.20,000 or more per month ..

Medical checkups for HBOT fitness: -

Pediatric checkup (Charges as applicable payable directly to the doctor’s clinic).

ENT checkup (Charges as applicable payable directly at the doctor’s clinic).

MODE OF PAYMENT:

  • In one lump sum, or, if in installments, then by the 7th of the month.
  • Payable by Cash, Crossed Local Cheque, Credit/Debit card swipe, Demand Draft Favoring “FSMHP” payable at New Delhi

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ADDITIONAL INFORMATION

  1. Medical Assessment and fitness clearance is necessary for HBOT by ENT Specialist and Physician/ Pediatrician, to be done just before starting HBOT, or again if HBOT is halted for safety reasons due to inter-current illness during the HBOT regimen.
  2. Serial Videography may be done (free of cost to parent) when MMT regimen is started
  3. Children paying on a month-to-month basis only, must make payment before 7th of the month

Hyperbaric Therapy for CP

Hyperbaric therapy is possible as two modes, whose choice for a particular child depends on the recommendation of the medical expert panel based on clinical features & SPECT Imaging and parental choice based on economic and logistic reasons:

  1. 1.5 ATA pressure for 90 minutes, using 100% Oxygen for 60 minutes, one session every working day for 40 sessions, except Sundays, coded as HBOT. Cost as available at Fortis Hospital is Rs.1,95,000 for 40 sessions, where customized pressure facility with 100% Oxygen is available, to give tailor-made therapy as per severity of lesion(s) being treated.
  2. 1.3 ATA pressure for 90 minutes using ambient air throughout, one session a day every working for 40 sessions, except Sundays, 2nd & last Saturday, and compulsory Govt. holidays, coded as mHBAT. The cost of 40 sessions of HBAT is Rs.60,000 at present, with significant reduction as further therapy is done at a stretch. As per Lead Article and Editorial in UHM Journal March 2014, the efficacy of mHBAT and HBOT at 1.5 to 1.75 ATA are similar. The latter is what is available at most places giving HBOT. As per Wassman at al (2004), the efficacy of HBOT in brain lesions follows a bell-shaped curve, with peak at 1.5 ATA and decreasing benefit after that except in few severe tissue destruction cases and the like.
  3. Cost of HBOT 1.5 ATA with 100% Oxygen is subject to decision of the tertiary care hospital where children are referred to. At present, the cost is about Rs.1,95,000 for 40
  4. In Autism: Even though a few authorities suggest 1.5 ATA 100% Oxygenation, we are concerned about Oxygen Free Radical damage in brain in these children who are already deficient in their Free Radical Defense mechanisms. Laboratory facilities to assess Free Radical onslaught or Glutathione levels are not easily available in India. A recent Double Blind Placebo Controlled Randomized study by Rossignol et al has shown that simple compressed air mHBAT at 1.3 ATA achieves a significant improvement in brain function of children with Autism. Parents are free to opt for either therapy mode.

Regenerative Medical Therapy is too gray an area to discuss in a website. However, we have included some information on it in another part of our website. Click here to access it.

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Statements, Precautions, Warnings and Selection Criteria

Many modes of therapy are known and practiced in different parts of the world, with variable safety and efficacy. HBOT, mHBAT and Stem cell Therapy are still classified under Experimental Therapies. What UDAAN is trying to achieve is to bring all these modes of therapy under one roof in the best interests of a CP child, for the benefit of those parents who wish to avail of them under their own risk after giving us informed written voluntary consent.

We give no guaranty of success or cure or improvement.

All children volunteered for the therapy should preferably be aged between 1st and preferably 10th birthday. We can do other ages but prefer not to. This is because Leukodystrophy is claimed to start developing in the Ischemic area of brain by the 5th year in most cases, and continues to progress. There is no way to predict how much a child could improve, though we believe that the results will be best before 5 years age. Hence, if HBOT is given after age of 5 years, benefit may not be up to expectations. As per limited data available, until the age of about 7 to 10 years, the other modes of experimental therapy may be able to be of some benefit at least.

We prefer children of such parents who are educated, with good knowledge of English, to understand each mode of therapy on offer, and both parents (preferably) are willing to give written informed voluntary consent for each mode of therapy for which the child may be considered suitable.

The parent MUST UNDERSTAND that the new therapies are generally considered safe when used by persons trained in its use. UDAAN is fortunate to have a trained group of specialists in various institutions of Delhi who have agreed to support this venture. UDAAN only agrees to facilitate availability of these therapies to parents who desire to avail of the same for their child. We do not guarantee any cure or remarkable degree of improvement though we believe that the results we hope to achieve should equal or surpass any achieved so far in India, and should be on par with the best achieved anywhere in the world.

Follow Up

Each child is recommended regular follow up 2 to 3 times a year for 2 to 3 days, until adulthood.

For further details

Please contact at FSMHP-UDAAN project, C-27, Dayanand Colony, Lajpatnagar – 4, New Delhi - 110024.
Contact person at UDAAN: Center-in-Charge, FSMHP-UDAAN for the Disabled, on phone: +91-11-41621137, or write to Dr. Arun Mukherjee, Technical Director, FSMHP-UDAAN for the Disabled

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