MULTIMODE THERAPY AT UDAAN

Sponsorships / Donations to be arranged for various therapies and check-ups at UDAAN-INDIRA, as on 1 November 2009

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

The UDAAN Multimode Therapy regimen for CP is for six to eight months based on our experiences of the last 7 years in over 150 children given HBOT so far.
Parents desirous of a second round of 20 sessions of HBOT are recommended to get it done after the fifth month, and preferably during the sixth or seventh month, in order to avoid chances of metabolic fatigue in the brain.

UDAAN MMT Timeline for CP Children:

Plan of HBOT based MMT for CP

  1. Intensive Standard Therapy for 8 months, daily except Sunday, second and last Saturday and Statutory Govt. notified Holidays
  2. HBOT / mHBAT for 40 days, one session per working day, starting Day 1
  3. Additional 20 sessions during 5th month after 4th month if desired.
  4. CT-cum-SPECT Fusion Scan of Brain before HBOT and at 6 to 8 months.
  5. Additional Therapies where indicated, on extra payment as applicable.
  6. Corrective surgery whenever required for contracture / deformity

OPD expenses for Children with Cerebral Palsy and Autism Spectrum Disorders (w.e.f. 21/09/2009)

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OPD EXPENSES TO BE ARRANGED AS SPONSORSHIPS / DONATIONS UNDER SECTION 80-G OF THE IT ACT, for Children with Cerebral Palsy or Autism (w.e.f. 21 September 2009)

Item

Amount

Remarks

Registration

Rs.500

One time

Standard Assessment of CP Child

Rs.2500 each time

Physical, Mental, Speech & Language level assessment

Standard Assessment of ASD child

Rs.3000 each time

Physical, Mental, Speech & Language level assessment

Psychologists Assessment for ASD child

1st Visit: Rs.1000
Revisits: Rs.800

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

Medical Consultation

Rs. 400 at Shubham Hospital (Morning) or Rs.500 at Maples Medical Center (Evening), each time
Complimentary consultations at INDIRA Center for children taking regular long term therapy there

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

Rs.300 per one hour one-to-one session, Rs.7200 per month

Concession for advance payment
if paid before 7th of the month or on joining (Rounded expenses for all 3 Rx):
10% if 1 month advance (Rs.13,000)
15% if 2 month advance (Rs.25,000)
Maximum 20% if 6 month advance (Rs.70,000) or longer.

Special Education

Rs.150 per half hour one-to-one session, Rs.3600 per month

Speech & language Therapy

Rs.150 per half hour one-to-one session, Rs.3600 per month

Dietician Counseling

Rs. 350 each time

SPECT Scan
We strongly recommend a follow up 2nd SPECT Scan at 8th month

Rs.9500/scan, as of now

For single child

Mode of payment for SPECT SCAN: Directly to Scanning Institute

Rs.8500, as of now

In group of 2 children.

Accommodation (Guest – house)

Rs.600 to Rs.2000 per day (room rent only).

Depends on locality, and facilities desired.

Pay directly to Guest House

Accommodation nearby on long term

Single unfurnished room with attached bath in nearby middle class area @ Rs.4000 or so per month, to higher end flats @ Rs.15,000 or more per month as per locality and facilities provided by owner.

Medical check ups 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 / Intercity Cheque / Demand Draft Favoring “FSMHP INDIRA” payable at New Delhi

 

INDIRA - UDAAN AUTISM THERAPY PROJECT

INDIRA-UDAAN Autism Project

  1. General expenses as above
  2. Biochemical Tests expenses once every 3 months, will be as charged by Dr. Lal Pathlabs, Religare Laboratories and Genetics Dept. of Sir Ganga Ram Hospital
    We have arranged significant concession in test charges at the designated laboratory branches at Delhi (up to 25%).
    The usual cost of the tests may run up to Rs.20,000 per quarter, less concession permitted.
  3. After Drugs Controller permits, Inj. MB12 and oral DMPS will be supplied, 3 months stock at a time, only to children who undergo complete assessment as per protocol, at UDAAN-INDIRA ONLY.
    Children, who fail to turn up on time or get tests done elsewhere, will be considered drop-outs and no more drugs will be supplied to them as per research protocol. This includes hospitalization or other causes of failure to turn up.
  4. Some children will be in the placebo group, even though they pay for the MB12. Their costs will be adjusted and compensated when they are allotted active drug on completion of 6 months of placebo as per protocol submitted to Drugs Controller.
  5. As per protocol, only those children who test positive for overload of mercury, cadmium, arsenic, lead or aluminum, will receive oral DMPS.
  6. Children opting for mHBOT 100 sessions after completion of the drug trial will receive 10% concession on prevailing rates at UDAAN-INDIRA.

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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 intercurrent illness during the HBOT regimen.
  2. Serial Videograph IS INITIATED ONLY 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 other 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.
  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 HBA
  3. Cost of HBOT 1.5 ATA with 10% Oxygen is subject to decision of the tertiary care hospital where children are referred to. At present, the cost is Rs.72,000 for 40 sessions to children referred by UDAAN-INDIRA
  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. The cost of mHBAT is Rs.40,000 for 40 sessions as of now.
    Parents are free to opt for either therapy mode.

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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 and mHBAT 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 7th 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 on offer have limited reports on success and are experimental. They 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 UDAAN-INDIRA project, D-93 Amar Colony, Raghunath Mandir Road, Lajpatnagar – 4, New Delhi - 110024.
Contact person at UDAAN : Dr. Anand K Arya, UDAAN-INDIRA Center-In-Charge, Tel. +91-11-41621137, or write to Dr. Mukherjee, Director, FSMHP-UDAAN (See below) or Phone +91-9811157839.

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