- TA Clinical & Research newsletter for professionals – Issue 2 out!
- Century-old drug offers new hope for autism treatment
- Autism charity calls for better medical care for people “left in pain or to die prematurely”
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- Treating Autism coming to Basildon, ESSEX
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Sean was born in 1997, 3 months premature, weighing a whopping 4lb! He was only in special care for 6 weeks and was always referred to as “the impostor”, by the Doctors as he was so big and healthy. Everything was fine when he came home bar some feeding problems [projectile vomiting] he thrived though and was a very contented baby.
He had his early vaccinations and appeared to have no problems with them, he didn’t receive MMR. At about 16 months he started to slip away from us, spending inordinate amounts of time spinning a wheel on a toy truck, he stopped interacting and lost the few words he had, eye contact was fairly fleeting but could be got, he became very quiet, still not demanding, passive. Our Health Visitor was concerned and referred us to the paediatrician at our local hospital. The diagnosis of autism followed.
A couple of months later he just completely flipped, he screamed from sun up till sun down, barely slept, and threw his head off the hardest surfaces he could find. In total despair we took Sean to A&E one night, Sean had bright red ears and appeared to be in real pain.
The Doctors at the hospital refused to look at him, they told us this was autism, “this is how they are”. After a 3rd doctor refused to look at Sean my husband became very agitated so they agreed to have a look in his ears, both ears were infected. We left with a grudging apology and a course of antibiotics.
What followed were the worst days of our lives. Sean’s self-injury increased to the point where we were lying on top of him to stop him seriously harming himself, his screams were pitiful and relentless, he barely slept, just a couple of hours from exhaustion. We went to the G.P. who gave more antibiotics, Sean got worse, we now had diarrhoea 10 times a day, it would be smeared everywhere, and the self injury continued. The GP referred back to the paediatrician, who referred to the Gastroenterologist, more antibiotics, and so it went on and on.
Then I happened on Marilyn Le Breton’s article in the Daily Mail, about the GFCF diet. This is when I discovered milk allergy and their relation to ear infections, within a week of removing milk the ear infections had gone, something the mainstream Doctors had never managed with all their antibiotics.
The problem now was his gut, the diet did nothing to heal Sean’s gut and he was now failing to gain height and weight, as he tumbled down the percentiles he developed huge black rings round his eyes, and would still have “traffic light” ears. The Doctors again blamed everything on his autism and said he was “categorically not in pain”. More research led me to Candida, this thought I took to the Gastro, who agreed to put Sean on Nystatin for a trial period, more to keep me quiet than any real belief that this was a problem. Initially Sean improved with less diarrhoea, maybe only 5 or so times a day, but over time he seemed to become resistant to the Nystatin.
Around this time I discovered the Autism online support group and met M and D online for the first time. Now I had found people who knew what was going on with my son, for the first time in years we had hope, something to cling to, we had already given up GF as it was clear gluten was not an issue for Sean, but remained CF and were aware of a few individual intolerances. We started digestive enzymes, and almost immediately saw an improvement in Sean’s gut issues. At this point we started to add in supplements but were never really sure what he may not be tolerating, we needed to do some tests. Not having a huge list of Doctors here in the U.K. we chose the nearest and had the tests done on his nutritional and toxic status. This was a big turning point for us, we were able to stop those supplements which were not required and add in those he was deficient in.
Sean now started to move up the height percentiles, 2nd to 9th for height and 12th to 25th for weight. He had normal bowel movements once a day. Specific vitamin supplements like b12 appeared to have made him more ‘aware”, no longer spaced-out, very connected and enjoying pretend play.
He is now in his new school and this has obviously had some impact. He is far more like a child with development delay than the profoundly autistic child he was. He is never lost in his own world, he attends well and stays on task. He has become increasingly independent, sometimes overconfident in his skills. He has mastered riding a normal two wheeler bike without the stabilizers. I actually thought we would never see that but Sean, being Sean, just takes it in his stride. He probably thinks he never had any problem with physical ability in the first place. He is very much a tomboy and most likely would never have been bookish or in any way academic even without autism.
He swims lengths of the pool with confidence, he is fast, he can swim under water, jump in at the deep end, bombs and does the worst dives possible but he is working on them. He remains fearless, now aware of some dangers but fearless anyway. He is generally happy, smiley, very naughty, can read faces and always looks for the reaction. He knows, absolutely, how to get his own way with most people. He points to share experiences, not just for his own interest. Sean enjoys physical humour and loves to laugh and make people laugh, he adores being the centre of attention.
Things we still work on: Remains frustratingly non verbal, but a powerful communicator in that he can always make himself understood, double edged sword in many ways. His only non communication is pain, he will still rage when in pain, this means I have to become detective and work out what the problem is, it can be as simple as wind or as painful as reflux.
Reflux itself has surprisingly responded very well to carbohydrate-digestive enzymes but we are still seeing some from time to time, the bigger the meal the more likely, he has a very good appetite.
We have adjusted his supplements over the years to take into account his gut healing and more varied diet, some things have been dropped altogether and other things have brought about more improvements.
He is very far removed from the malnourished child he once was. I remain convinced language is in there, he just needs to know how to get it out, he certainly understands every word said to him, with no visual cues, he will respond to a request called from another room.
Sean’s occupational therapist describes him as the most able child in the class, she didn’t know him when he was described by a head teacher one of the 4 most challenging children in the entire school!
Sean looks forward to see what every new day will bring, he is keen to learn and we look forward with confidence to another year of improvements.
Biomedical has taken my son from a wounded animal, a pathetic little scrap of humanity to a healthy, strong, funny, sociable and sometimes naughty child.
Vicky, Mum to Patrick aged 13 & Sean aged 11 years
Since last writing we have been able to identify that reflux is responsible for virtually all of Sean’s rages which are now thankfully few and far between. It’s been a long road working this out as a rage cycle for Sean is his least communicative time. He still has to have Zycarb with every meal and we have been using natural therapies to deal with significant parasite problem. I cannot recommend this enough as parasites add to the reflux problem, things are definitely under control now. At 12 yrs old Sean has entered puberty which brought OCD, we introduced Inositol and he has responded very well. Everything is looking good, bowels are good, reflux under control, OCD under control. We are now fighting County for the autism specific education that he will need to progress. Sean is ready to move on, no pain, loose bowels, stimming, zoning out; he is ready, we are ready.
VickyVisit this page for more Parents’ Stories of Hope
Our charity is run by parents and we value parent experience. As such, we encourage parents to share their stories. Parent experience cannot be viewed in any way as medical or therapeutic advice. Each parent story is just that: one account as shared by one family. Your family’s experience may be completely unrelated.