ELSTREE AERO-MEDICAL CENTER

www.elstreemedical.co.uk

Secretin

This page provides you with information about the treatment of Autism with Secretin, and we hope it is helpful in answering some of your questions. You can either read the whole page in order or browse a section at a time:

Background Information

As you are considering treating your child with Secretin injection(s); I thought that you might like to have some background information regarding its use, and the observations to date on the outcome of these injections. No doubt you will have many questions, - please feel free to contact us to ask!

The first thing to say is that the use of Secretin in the treatment or management of Autism is very much an unknown quantity. Although in the United States Dr Bernard Rimland and others have treated many thousands of children; there is as yet very little published data on the outcome of this treatment - we are really ‘feeling our way’ with this treatment.

We use Secrelux. Secrelux is the first recombinant DNA - synthesised form of Secretin (produced by a very reputable pharmaceutical company).

Theoretically with synthetic Secretin there is less possibility of adverse reactions and long-term antibody formation.

You should understand the position regarding the use of Secretin in the treatment of Autism. Secretin as a therapeutic agent has no UK licence. This is not an unusual situation with new drugs and therapies, and usually occurs because the process of obtaining a product licence in the UK is a very long-winded one; Bioglan has applied for a product licence, but it may be some time before this is granted. Until Secrelux does have a product licence, should there be untoward effects from the infusion; you will have no recourse in law to the manufacturer. In fact, to date there have been no recorded instances of serious adverse effects; and I have had no reports from parents of any, either. At the time of the injection there will always be available the equipment and drugs needed should your child experience any adverse or unwanted reaction.

The injection is given as follows:

First your child is weighed in kilos and the dose (at 2 units per kilo) is calculated. It is recommended that this dose is not exceeded on the first occasion.

Then I use a ‘cold’ spray (ethyl chloride) which chills the skin at the chosen site for the injection (usually at the back of the hand) or front of the arm. Quickly thereafter I inject a small (10 unit) test dose of Secrelux. We then wait about a minute and the injection can be given. The whole process takes about 1-2 minutes. Second and subsequent injections take a much shorter time.

Please note that the injection is not painful, and does not sting. Few children cry, and if they do it is usually because they don’t like to be tightly held. We will not under any circumstances use excessive force or ‘hold down’ your child, or sit on them or in any way distress them any more than they must be.

At all times they will be treated with respect and consideration - but remember that sometimes you have to be cruel to be kind and we must at least hold their arm as steady as possible during the injection, which takes about 2 minutes.

Children do not seem to be distressed after the injection - once we ‘let them go’ they usually stop crying immediately!

During the injection you may offer them lollipops, sweets and drinks if you wish, sing or do anything which you feel may comfort and reassure them. I have a three year-old son, and I would always want him to be treated kindly.

After the injection you may take your child home as soon as you wish, there is no need to ‘wait for a reaction’ as there will be no immediate good or bad reaction. Usually the positive effects take about a week to show.

After the First Day

You will be given a ‘SOS’ (Secretin Outcomes Survey) report to complete on the day of the first injection and weekly thereafter; and we would ask that you bring these back with you each and every time you re-attend.

I recommend that the first 2 or 3 injections are given at regular 4 week intervals (to "build up" an effect) and subsequently, may be given at longer intervals depending on the effect; please check with my PA Susan Hawkins or Nurse Norma Sheehan regarding the date of the next clinic.

My experience has shown that the best regime to follow is: The initial injection at 2-units/kilo-body weight. (in children up to and including 6 years of age) Then - if no change is noted, the next injection at 4 weeks intervals; if there is no further improvement and then the dose is increased to 3 units and so on.

In older (over 7 years) children, I recommend the first injection is given at 2 units, the second at 5 units, then back to 2 or 3 units according to response.

By using the flexible dosage schedules, I have found that the response is greater, more rapid and more sustained. If you do not wish to follow this protocol, please discuss this with me.

Conclusion

We do not know at present, how long the injections will need to continue, or what happens if you stop. How many injections your child will need will obviously depend on their overall progress - let’s see what happens; and play it ‘by ear’.

Some children have stopped having injections, and all that seems to happen is that they slowly ‘go backwards’ - and improve again once the injections are re-started. We hope to know more about how long the injections will be needed once the Repligen trail data becomes available (about 1 -2 years time).

As I said before, please feel free to ask any questions - either of myself on medical matters or with Denise or Sue, who has dealt with a large number of queries and enquiries!

Thank you, and let’s hope that your child will experience benefit from the injections.

Please read our Autism Therapy Update on Secrenase (tmp) - our unique Secretin nasal spray.

Dr David Pugh

Elstree Aero-Medical Center