Buckley: answer from Indian DS supplement research team

[Guest guest]

Hello

I just received a message from the Indian researchers. They say that

the children were psychologically assessed with 5 different tests (see

below). I have no clue as to the scientific validity of these tests as

I am not a medical professional, but hopefully you're in a position to

assess this information better than me.

A medical doctor on a German DS list, obviously finding it hard to

believe in children with DS profiting from nutritional intervention,

argued that they might not have been well enough nourished to begin

with, which was strongly denied by the research team.

Regards,

/Switzerland

***

Von: jyothy akka

Gesendet: Montag, 1. Dezember 2008 12:43

An: Müller,

Betreff: Re: Questions on Down Syndrome study

Dear Mr Müller,

Thank you for your interest in our publication. We would like to

address your queries regarding psychological assessment tests etc. The

following tests were administered, assessed and reported by the

clinical psychologist, qualified physician, physiotherapist, speech

therapist and scholastic teachers; in normal (control) children to

Down's syndrome children and DS children before supplementation to DS

children after nutritional supplementation.

1. Vineland Social Maturity Scale (VSMS)

2. Binet-Kamath Test (BKT)

3. Seguin form Board (SFB)

4. Developmental screening Test (DST)

5. Gessell's Development Schedule (GDS)

The results of the study were encouraging because the parents have

given written appreciation of the improvement in health, social

behavior and comprehension as commendably high in their wards after

nutritional supplementation.

In view of this it is aimed to extend this study to a larger group

with an intention to help these needy children.

The question of under nourishment of Indian DS children is incorrect

and it may not be out of place to inform that such children are

attended with more care by parents as well as health care centers.

It is highly appreciable for your interest and concern about our study

and we invite such queries which will help us improve our programe.

Sincerely yours,

Prof. A. JYOTHY & Dr. KTN Lakshmi

On Tue, 25 Nov 2008 Müller, wrote :

>Dear Dr. Jyothy

>

>it is with great interest that many parents of children with Down

Syndrome have received your study " Serum cholinesterases in Down

Syndrome children before and after nutritional supplementation " . Many

were made aware of it by reading the news alert on

www.nutrivene.com<http://www.nutrivene.com>, as there are quite a

number of parents already supplementing their children with specific

nutrients, hoping to boost their health and development.

>

>I myself have a 4 year old son with Down Syndrome, and as a member of

the Swiss Down Syndrome parent support group

(www.insieme21.ch<http://www.insieme21.ch>) I am responsible for

collecting, translating and disseminating news from the world of science.

>

>The study has provoked a lot of discussions in different Down

Syndrome listserves, and also some questions have been raised.

>May I address you with these questions? I would then gladly convey

your answers to interested parents.

>

>- in the SMJ article you mention cognition, memory, communication

skills and learning having been assessed as well. How did you do this?

What kind of tests did you use?

>- was your study blinded or double-blinded?

>- does it being a pilot study mean that there will be another study

following?

>- how was the nutritional status of the children with DS before the

study? Was it comparable to the control groups? (I very much resent

this attidude, but one German medical professional assumed that

children with DS in India might not be nourished very well)

>

>Very much looking forward to your answer, yours sincerely

>

> Müller-Winter

>Zurich/Switzerland

>

> I asked a few days ago for information about the psychological

assessment methods and data but have not heard back.

>

>

> ________________________________________

> From: DownSyndromeInfoExchange

[DownSyndromeInfoExchange ] On Behalf Of Müller

[mueller-winter@...]

> Sent: 25 November 2008 13:35

> To: DownSyndromeInfoExchange

> Subject: [DownSyndromeInfoExchange] Re: News alert on

Nutrivene-website: new DS/supplement study

>

> Yes . I was actually referring to the Singapore-study, not the

> British one. I think I'm going to address the researchers directly and

> ask them a few things about the study.

>

>

> ______________________________________________________________________

>

> Are You Up for Reading? http://www.up-for-reading.org/

>

> Down Syndrome Education International http://www.downsed.org/

> Down Syndrome Education USA http://www.downsed-usa.org/

> Down Syndrome Online http://www.down-syndrome.org/

>

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