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The following narratives were written by parent. Please read their stories and take comfort that you are not alone and that your situation is not hopeless. Thomas' story Thomas is 9 years old and was diagnosed with autism at the age of 2.5. At that point I was pregnant with our second child Fiona who is NT. We very quickly learned about GF/CF and started GF diet a month or two later and went CF also when Thomas was 3 years and 4 months. Thomas improved on the diet but did not have the amazing results that other people have reported. Around about that time we also started ABA and have continued to use this approach to date. Thomas definitely made progress using these interventions but it was quite slow and he seemed to loose skills frequently and we would continually have to go over old ground. Then in October 2004, Thomas became constipated, it resolved (or so we thought) and then Thomas became incontinent with what we and the doctors thought was diarrhoea Thomas went from being a boy who was predominantly independent with toileting to being incontinent of faeces from 15- 50 times a day. It was awful. It impacted on all aspects of family life. Even going to the park became a nightmare. In October 2005 we went to the Edinburgh Treating Autism conference and were inspired. We had our first consult with Jean in November 2005.
It was a very difficult time, but to be honest we felt that we could not sink any lower at that point. Thomas’s gut was so bad that he was becoming aggressive. Biting, hitting and was certainly less happy than normal. We did the full DAN testing and it highlighted how bad Thomas’s gut was with yeast, parasites and bacteria. One of the worst stool results Jean had ever seen. At that point Thomas’s ATEC score was 93. We changed Thomas’s diet to also be corn free, soya free, yeast free and sugar free. We saw immediate improvements, but he remained incontinent and continued to bite etc. The amount of supplements Thomas was on gradually increased but even that was fraught with difficulty as he seemed to react to the most simple things e.g. he is still not on any fish oils as everything we try sends him wild. However his concentration started to improve and he was so much less hyperactive. His receptive language and comprehension really came on and the school were noticing these improvements too. And over these few months his biting decreased from 4-6 times a day to about once a week. His ATEC score was now in the 70’s.
In April I went to the DAN conference in Washington. Thomas was still incontinent and I wanted to try to resolve this. At the conference one of the doctors said that Thomas had to be constipated and that we should get an x-ray done. He also gave me some pointers on how to keep him clear. I learned a huge amount. It really complimented everything that Jean had been telling me. SCD was also very big at the conference. We decided to go down that route too and started SCD on 17th April. So far SCD has made the single most difference to Thomas. We kept Thomas off school for a week to introduce it and he changed in that week. When he went back to school everyone was very impressed by him. He was even more calm, had even better concentration and as a result could participate better in his class lessons. He still occasionally bit and had occasional off days but they were definitely on the decrease. We got Thomas x-rayed and it showed that almost his whole large colon was impacted. We cleared it using enemas and maintain his movements on oxypowder but there is a fine line between movements and diarrhoea, we aren’t quite there with that yet and so many other things affect that too especially die off, gut bugs and SCD regressions. But on those very difficult days if I compare what he was like before biomed I am always left with the feeling that this is right.
I find that it is always good if you can compare big events that happen rarely e.g. we went to the same villa last summer to this. The difference in Thomas was great. Last year we took Thomas to the toilet every 15 minutes. Believe me it was as bad as that, we weren’t on holiday alone and 4 of the adults took 15 minute slots in turn. I could still tell you that my slot was quarter past to half past the hour and my husbands was half past to quarter too. This year there was none of that. Last year we had to hold his hand going everywhere as he would run off. This year he walked beside us everywhere with out holding hands. On our last day we went to a water park. Thomas and his sister had a great time and for the first time in our lives we were able to let Thomas and his sister play on the slides without an adult going up and down beside them. We did have to station our selves at different points of the pool to make sure we didn’t loose Thomas but it was fabulous. Looking back. What a change!
Thomas’s expressive language is slowly coming along too and his receptive language is really quite good. He does still occasionally bite, but I can generally attribute that to die off/gut bugs. We have a very long road to continue traveling along but we will get there with the help of Jean who is invaluable.
As I am sitting here writing this e-mail Thomas keeps coming in to play tag!
Thomas’s ATEC score is now about 63.
We have yet to start MB12 injections but hope to start in about a month and then hopefully chelation. And although I know it is a long road, for us it has been very worthwhile. In fact every parent I have spoken to has felt the same. All of our children are different and some will recover and others will not but they will ALL improve and that is all I want. I want Thomas to reach his potential, whatever that may be. I know that Thomas is happier and healthier and we as a family are also happier.
I hope that Thomas’s story helps you. Have you joined Autism-Biomedical-Europe@yahoogroups.com. It is a mailing list full of parents just like you and me. They have a wealth of knowledge and all members are there to support each other. If you haven’t already joined I would recommend it.
Good luck and best wishes. Archie's story I
just want to briefly tell you about my son Archie, He is four years
old. We have been with Jean since July last year and I really do trust her. I feel she is very thorough and you know that she has given her daughter all the treatments that she advises us to give to our children. She has lived through it and her daughter is now doing great.
Archie has also had terrible gut bug and parasite problems. We did our first clear out August last year, at the beginning of the programme. This was a wow treatment for us. At that stage Archie could only use one word to ask for anything, he didn’t have many of those and what he could say wasn’t that clear for other people to understand. Well, that week we did the clear out and it really was amazing, He went from one word in a sentence to putting 3 and 4 words together, literally overnight. He was also on the oregano drops for a couple of months and yes we did experience bad die off with this, but that was how I knew that it was working and he really did have these parasites and bugs, because those die off symptoms were a result of parasites being killed off. I think it would be more worrying if he didn’t experience this as we would wonder why it wasn’t working.
There have been ups and downs along the way so far, and Archie does experience more tantrums than before, BUT the progress he has made has been absolutely amazing, he doesn’t stop talking, words are becoming clearer and clearer each month, he answers questions with a yes or no, rather than just repeating the words back to me, he can tell me about his day, what he did at his ABA/VB nursery, in broken sentences, he is initiating play with his twin sister Ruby, his imagination is great, playing on his bike pretending to go to petrol station, shops , school, whatever comes into his head. Plays with dolls and characters, has them talking to each other, sleeps through the night now without waking up with a blood curdling scream!!!! The improvements are endless, also none of this has been taught through VB therapy, its all things that he is learning naturally like a typical child would. So much so that he is going to lose his place at the VB nursery as they cant justify his place there anymore, he will be starting mainstream in September with support.
Archie has gone from a boy, who was severe, would self harm, head bang etc, scream all the time, never sleep, we were housebound as he couldn’t cope with the outside world, different environments and people. Couldn’t even travel in the car. Now we get comments all the time, what a changed boy he is and we now have a much happier family life, so the benefits for us defiantly out way the negatives.
If we had listened to sceptics and our paediatrician Archie would probably be in restbite care now and I would have had a breakdown. They told me there was nothing I could do for my son, but to manage his behaviour. We now have a boy who has come back to us, has a cheeky personality, loves life and is mostly happy, content and is free of pain.
Put your trust in Jean, her dedication is amazing, which you don’t tend to get as much from other DAN doctors.
Also I normally say to sceptics that say there isn’t enough research into all of this, I haven’t got time to wait 10 or 15 years down the line for it all to be proved, as it will be to late then. I don’t need to wait for this, I have my own son as proof. As parents, we are not stupid, we are not clasping at straws, as some believe, and we are the only ones that are able to make a better life for our children.
The caudwell trust have just awarded us with funds to help towards financing this treatment for the next two years, now a charity wouldn’t be giving out thousands of pounds for treatment that was wasn’t really working!!! |