OUR EXPERIENCE

Federico is a child with a Generalized Development Disturbance of Autistic type, even if probably not of the most serious type, such that in the USA it has been classified as a "Multisystem Developmental Disorder (MSDD) ... instead of Autism, as he is so warm and related, affectionate and happy. He is too connected to other people for the autistic diagnosis (S. Greenspan, MD - 1998)". Federico moreover developed his problems at the age of approximately 1 year, and can therefore be catalogued as a late "onset" type autism. At 1 year Federico had already begun to speak saying "mamma", "papà", "yes"," no ". Then something happened that could be linked to one or to the combination of the following chronological events:

It is a diffused, reasonable and confirmed opinion from our experience, that children, who suffer from a development disturbance of autistic type, must be diagnosed and "treated" as soon as possible. The earlier action and the better the recovery hypotheses are, provided that the treatment is appropriate and not fictitious. We have unfortunately to report a sad story ourselves; despite having been diagnosed at the age of 2.5 years, after short periods in a day hospital where Federico was evaluated from a neuropsichiatric point of view, we spent a year and an half with only two sessions of speech therapy per week, wasting valuable time.

At 4 years of age, after some search over the internet, we have independently decided to fly in the USA and adopt the method of Dr. Stanley Greenspan (Bethesda, MD) called Floor Time. This method is basically an extremely involving behavioural therapy and demands much energy and dedication by the parents at home. In order to follow this method we took advantage of the cooperation of some Psychologists who helped (and they still help) us to hold Federico under continuous communication involvement.

The constant relationships with peers are of fundamental importance, and at school Federico can take advantage of the class situations in a very effective way, with the aid of the support teacher, the curricular teachers and the children themselves. We have translated from English in Italian a text found on the web about the use of the Floor Time, that might be useful to you as base for discussion with the teachers of your child.

Along with Floor Time, we started looking into the possibility that our son was sensitive to certain foods. When we found out about the possible correlation of autistic syndrome with metabolism and bowel absorption problems, we began at the age of 5 and half, a diet that limited (did not exclude!) the assumption of diary.

We had the proof of the correlation between food and behaviour, in the period of Christmas 2001 when, because of the very limited diet of our son (pizza, pasta with tomato sauce, chicken breast, fruit and cakes) we decided to re-introduce dairy products. His regression was quick and awesome: our son developed nervous tics, stereotyped movements, echolalia and fell back into that isolation from which we had partially extracted him with the therapy. After consultation with our reference doctor in the USA, we began a very strict diet without gluten and milk that has brought good results, with the complete regression of all the described manifestations. We have also verified that our son was also sensitive to other things; in the summer of the 2003, we realized that cola-based soft drinks were triggering the nervous tics. Once we eliminated these triggers, the tics disappeared.

The correlation of the events was incredible to notice that indicates an extreme apparent sensitivity of the child to the food. We have reached the conclusion that is extremely important to follow a strict diet: no cheating!

A scientific confirmation to this hypothesis came through the urines analyses made in Norway from Dr. K.L. Reichelt (MD PhD) that have revealed a high urinary peptide content with deviated levels from "normal" subjects. There are several explanations available on the web about the reason of these abnormal levels of peptides. As a reference, see the article located at the ARU (the University of the Sunderland) site.

During 1998, we received indications from Dr. Greenspan to follow a program of auditory training, and for a couple of years, we did two sessions per week of therapy following the method "Tomatis" in a centre in Rome, which later we discovered was not certified by the parent company in France. We are unable to say how positive this period of therapy was, but Federico definitely has a problem of auditory acquisition and this method is dedicated to the resolution of such limitations.

A further step ahead was the use of multivitamin supplements, as suggested by the Autistic Research Institute (A.R.I.). We began with liquid SuperNuThera with 5P5 from Kirkman Labs, one teaspoon after each main meal. After some months we also began giving DMG (Dimetilglicina), in 120 mg capsules, one cap per day. The period in which we began the strict diet and the supplements coincided with the start of structured oral communication by Federico (around 7 years of age).

Always in the search of possible additional therapies, in May 2003 we bought from the USA a book suggested on the A.R.I. site, which was a good compendium on the latest therapeutic approaches to treat Autism:

Children with Starving Brain (2nd edition) - Jaquelyn McCandless, MD - Bramble Books - ISBN 1-883647-10-X

Following the book's indications, and with the help of our paediatrician, we added the supplement of Calcium Gluconate 1g in liquid that we give in fruit mix on average every other day. When we began to give Calcium, we noticed a slight increase in Federico's hyperactivity, which however disappeared after a couple of weeks.

Since September 2003 we have started giving to Federico probiotics (Probinuil) that we succeed to obtain locally in a formulation "without flavours added" via our pediatrician, produced from the Ca.Di. Group company of Rome. This is declared on the web to be free from gluten and lactose, while the absence of dairy was confirmed over the phone. Since Federico has been taking these pro-biotic, his stools have normalised of colour and consistency; before, Federico alternated between periods of constipation and periods of diarrhoea with pale and very smelly stools. Moreover we have noticed improvements in school, especially in his reading abilities.

Since the beginning of the year (2004), we have also been giving Federico digestive enzymes (Kirkman - Enzyme Aid Complete with DPP IV) that should help to limit partially digested substances, which may reach the intestine. We began these supplements in January and therefore is not possible to make a full appraisal yet, however everyone meeting Federico even after only a few weeks are reporting an improvement in his behaviour.

At the end of February we went to the Pfeiffer Centre inWarrenville (Chicago IL - USA) to carry out comprehensive testing to check for metabolic disorders, and in particular for those related to methylation-sulfurationa and to the heavy metals processing. While we were waiting for the results and for further indications, the medical prescription was to add to the list of nutrients that Federico was already taking, some Cod Liver Oil enriched with vitamins A, D and fatty acids (Omega 3). A 2-months cycle of Methilcloabamine (MethilB12) (one of the two coenzymes of this vitamine which are active in the human body) was also prescribed. We have been told that MethilB12 has often proven an important factor in the speach and behavioural improvements and it is often prescribed along with doses of folinic acid. We are using the Cod Liver Oil from Kirkman (Nautural Cod Liver Oil Soft Gel Capsules, and Nordic Naturals DHA Junior), and the MethilB12 we got from the Coastal Compounding Pharmacy in Savannah (GA)

After almost 2 months, we got the test results back and they confirmed our suspicion of metabolic disorder, given the very low serum levels of Cysteine, Homocysteine and Glutathione. Moreover stool tests indicated the presence of Candida in the gut which, despite the probioticis, still seems to be present in higher than normal quantity. As result, Federico was prescribed, on top of the already mentioned supplements, a Zinc based compound (in view of a preparation to chelation), a transdermal Glutathione cream and some Nystatin for the Candida.

In the period spring-summer 2004 Federico has shown small but constant improvements that we refer to the long time effects of the MeB12 delivery. In parallel we have been further refined the behavioural tretment programmes. In particular we are following the guidelines provided from the book:

Teach Me Language - Sabrina Freeman Ph.D., Lorelei Dake B.A. - SKF Books - ISBN 0-9657565-0-5

Iin November we had our follow up visit at Pfeiffer, basically to check for the Zinc and gut status, in view of the start of a chelation theraphy by TD-DMPS, which has been procured in the USA via the AMX Compounding Pharmacy. Furthermore, due to an allergic skin reaction with the TD-glutathione cream, we are awaiting for the delivery of a new kind of oral formulation, called Lipoceutical GSH, which looks to be effective at leaset as the TD, but more tolerable. Finally, our reference Pfeiffer doctor, Dr. Allen Lewis, has suggested to switch from the DHA Junior to the ProEFA formulation which includes some Omega 6 fat.

Display the table of the supplements that Federico takes at the date of last update.

Last updated 11 December 2004

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