He was given Calpol and Ibuprofen. The first episode was diagnosed as Roseola Infantum (HHV6 virus) and this pattern was repeated for every tooth that erupted.

Christmas came and went and we didn't suspect any problems other than his speech was delayed and never developed much passed ch mm ttt sh . Darryl has his MMR vaccination on schedule.

We were concerned at 18 months. His sparkle was fading. We went for hearing and vision tests which were normal. A psychologist confirmed he had developmental delay. He had no eye contact, which was obvious when pointed out, but it never even crossed my mind before then. He had no speech and behaviour was getting worse. He started having trouble staying asleep at night was waking frequently for short/long periods of time.

At his 2.5 year check the health visitor referred him to a well-trained paediatrician, who shared her suspicions about autism which was something we had never heard of.

He was referred to a unit which had a speech therapist/ play therapist for three mornings per week for 2.5 hours. It was October 2002 and Darryl looked very autistic now. They used PECS in the unit and Darryl seemed to respond positively to this.

In April 2003 he also attended mainstream playgroup with full time support two mornings a week but in September, entered a special assessment nursery which had a speech therapist and also used PECS. It was clear from day one his nappies were foul and he was barred from nursery because of this, on and off. As different people were changing his nappies, nursery, me and his dad, it did not dawn on anyone of us his poops were soft /diarrhoea every time.

A neighbour suggested we take out dairy and this improved things slightly. He was referred to hospital for NHS tests. Blood, urine and stool samples were taken and, predictably, all came back 'normal', no amino acids disorders, nothing found in stools, not Celiac, nothing in urine, no Fragile X chromosome disorder.

In December 2003, we heard about the GFCF diet and our brief success with removal of dairy made us think the diet was worth a go. We have never looked back! We had eye contact, a few words, and much better stools within a week of removing dairy and gluten.

We kept a food / behaviour / poop diary to monitor things and joined Allergy Induced Autism and read everything we could find on diet and autism. We quickly established that dairy, gluten, and particularly soya were the biggest triggers of diarrhea. Monosodium Glutamate, Aspartame, food additives, and
colourings were the triggers for hyperactivity.

When his poops were good, his behaviour and speech was good. When they were bad, so was he! We started to look carefully at the days when his poops were really bad and worked out that eggs, omatoes, citrus fruits , grapes, apples, broccoli, corn, refined sugars (any ending in syrup), and vegetable oil were also causing problems.

At age 3.5 years, in March 2004, Darryl was given a formal diagnosis of autism. At around this time, diarrhoea was kept at bay for the most part but kept coming and going for no reason we could think of. Within 6 months his co-ordination had improved (couldn't jump with both feet or ride a bike before) . Sleep better but still waking up. Hyperactivity reduced.

By May 2005, speech was now up to six words in a sentence. Darryl could say about 500 words but didn't see the point. Prior to diet would only say one word if we were lucky. Concentration had improved but still easily distractible and had trouble staying on task for many things. At the same time though, he could focus in on a few certain activities, to the exclusion of everything else. Not particularly bothered by change to routine. Didn't have any flicking or stimming.

Darryl liked water and Thomas the Tank Engine but was not obsessed. It appeared that he has a photographic memory--he can remember anything and in the right order. He could also appear deaf at times to others talking to him but fine with me. Didn't like queues and wouldn't wait for anything!!!!!!

We really struggled to find a multivitamin without citrus in, he even reacted to the BioCare formula.

In May 2005, we went to see DAN! practitioner, Jean Muscroft, in Chester. We read Children with Starving Brains by Jacquelyn McCandless and started attending autism training courses and conferences.

We arranged for repeat blood, urine, stool tests at various well known labs, to try and get to the bottom of why the diarrhoea would come for no reason, to find a suitable multi vitamin and to try and sort out his growth which had severely slowed down.

The tests showed he had parasites, bad bacteria in gut, inflammation, occult blood, overly acidic stools, high SigA (secretory IgA) in stool, amino acids all out of sync and deficiency in many vitamins and minerals. Ferritin very low (iron stores) not picked up NHS who did full blood count. This test that provided us so much information was a functional blood chemistry profile.
At age 5 years Darryl tested for high triglycerides (poor fat absorption) and needed to eat protein in small amounts often. Tests also indicated a 'folate trap' which is trouble processing folic acid. He had high histamine levels (cause of anxiety) and high kryptopyrroles. When we got these results we were amazed. The key to the tests is that they are far more comprehensive than the NHS ones.

We started on L-Glutamine to calm and soothe his gut. We treated the parasites with antibiotics, gave him Kirkman's yeast aid to try and stop anything nasty colonising his gut and started probiotics.

We found found a multivitamin he tolerated made by Metabolics which has no additives, colours and has the folinic acid instead of folic acid, which is important in Darryl's case as he is unable to process regular folic acid.

Partly because of our discovery that he had to eat protein, little and often, Darryl grew. He had grown 4 centimetres in three months and went up two shoe sizes in the same period! Eating this way helped his moods as well. So we were well pleased!

We started a customised amino acid formula to correct his imbalances which seemed to give us great improvements with language.

We tried Allergy Research Group Perm-a-vite powder with L -glutamine and MSM in but it gave him diarrhoea. However, it also gave good speech and social skills. He learned to ride a bike within a week of that. We had to abandon this due to the diarrhoea.

We tried Colostrum but it gave him diarrhoea and his behaviour was terrible so we stopped.

We tried MSM powder (sulphur) it gave him diarrohea and bad behaviour.

We then switched to Biokult probiotic, he could only tolerate one capsule of that. When we finished the bottle we switched to Custom Probiotics CP-1 formula and, you guessed it, the diarrhoea came back.

Then his behaviour seemed to decline after his amino acids, so we stopped them after 3 months of really good progress.

We started back on L glutamine by Higher Nature and decided to try and kill any baddies in his gut with CP-1 whilst he was off for the school holidays in July 2005. We expected diarrhoea but having stopped amino acids and reintroducing L-Glutamine, things were not so bad.

We managed to increase his multivitamins and Kirkman's yeast aid and introduced NAG -N Acetyl Glucosamine and extra calcium from BioCare. We had a week of bad behaviour, spots on his bum, classic 'die off' reactions, but after a week his poops were the best they have ever been!!!
In summary, at this time his behaviour was unpredictable, he still had no sense of danger and his concentration was poor. We had a major buggy to help us whilst we are outdoors for those autistic moments when he would lie in the road or refuse to walk. We were still struggling with his sleep, but we had gains in speech, poops, weight, height, and general demeanor :)

It was a struggle to get this far and we could have given up several times, had we not realised soya and citrus fruits were an issue we would have said the diet didn't work for him and given up too easily.

As of September, 2005, all our tests had given us a starting point for treatment. We now knew what was wrong with him. It had only been a few months since we started biomedical intervention but it was working and although it was very tough at times and involved a lot of research, we were confident of better things to come.

We finished our five week trial of MB12. No bad effects. I think it took about 3 weeks to get going and then we got better use of language. More words, then better context, and then we got the singing! Social side was a bit better too, and playing with his brother more.

Jean and Dr Heard both thought a trial of Kirkman DMG would be good now. It seems that the ones that do well on MB12 might do well on this. He had one capsule and BINGO! I had a chorus of Rudolph the Red Nosed Reindeer. In tune. He was singing this is the way we wash our hair, playing ring a ring a roses with his brother and then he started telling his own Thomas the Tank story! So we joined in, "Thomas went to ....left a blank for him he said, 'the seaside!' I said to see his friend...and he said, 'Cranky the crane!' and this went on for 15 minutes.

Talk about us finding the wonder drug! Light switch is on. I was doing the happy dance all around the house.

MB12, folinic acid, and DMG all work together in the methylation wheel. We just needed to know the amounts. We knew MB12 amount as this is based on weight. We knew folinic amount because of his lab test results, and so I was now on a mission to work out the ideal dosage for the DMG.

We managed to get Acyclovir from our GP (antiviral) because Darryl had a history of viral issues. I couldn't believe we got it without a fuss. We waited until Christmas to use it because it needed to be given 5 times a day. That December, 2005, he came home on the last day of school and had been awarded a certificate for excellence. Most improved child in the class. Well there were only 6 kids in there but I was very happy.
We tried our 5 day course of the antiviral drug acyclovir. The first 3 days there was nothing happening good or bad. On the night of the third day he was sick and bringing up plenty of what could only be described a plenty of mucus.

His face was flushed. That was the sickness over and done with. But then we had the next few days left of the course. During this time he was very hard to cope with: really bad behaviour, swinging, jumping, miserable, no concentration. I was at the end of my tether! I had to call in reinforcements to help watch him 24/7 as he was up to all his tricks: flooding the bathroom, smearing bathroom products, etc., but I persisted to the end.

As soon as we stopped them he was fine again. The spots around his mouth (which may be related to herpes virus) did we must wait to see if they will come back. Would I try it again? Maybe, if hell freezes over!
In the months prior to January, 2006, we introduced LDN (low dose naltrexone). It can help the immune system. Darryl was never ill. Never got a cold or a runny nose. His system was in a hyper immune state and needed adjusting to a "normal state". The LDN comes in a tube from the Breakspear Hospital. Ideally we had to give him 0.5mls which is 5 little lines rubbed into his skin between 9.00 and 12.00 at night. We worked up slowly 1 line, then 2 lines, then 3. Nothing was happening --good or bad. When we reached 5 lines, Darryl developed a very high fever, lethargy, runny nose, and a cough.

This was not like him. We were keeping up to date with the LDN trial which was being done by Dr McCandless on the LDN yahoo group. The advice was to keep going because we had managed to switch his immune system on.

After 3 days we were worried about fever which was over 100, but held off giving him any medication. After all this is what we wanted to see. On the 6th day of fever we abandoned the LDN and within a couple of days he was back to normal. We saw some improvements in language and sociability so put him back on it at just one line.

I do think it is excellent stuff. I think the fever may have been a dormant virus being activated. I can't prove it. Still 6 days of high fever is bound to kill anything off!

By February 2006, we were close to starting chelation and so began looking at his overall supplements. We B6 in P5P form from metabolic, magnesium EAP2 from Biocare, magnesium Ascorbate by Biocare (vitamin C) but with no citrus. Repeat blood test showed his ferritin (iron stores) had improved but was still low so we added in Spatone iron sachets --very absorbable in water. We also added Super E - Vitamin E and Zinc Monomethionine by Vitamin Research Products.

What we have learned is that some of the supplements we had tried at the start of the programme which had him reacting with diarrhoea and hyperactivity he could now tolerate well. Poos were super dooper. I had thought MB12 was making them a bit loose but now they were solid again.

Speech was really progressing now: "Darryl and James go and play in my bedroom." "I want to go to the wacky warehouse."

We repeated the amino acid test. Things have moved around a bit so we ordered the new customized formula.

Testing showed he definitely needed more B6, Magnesium, and zinc. So glad about that as we had just added them in prior to getting the results. That Jean is a mind reader! HE was also low in tryptophan so we started shoveling in the bananas and turkey. We have had 4 nights of him sleeping through the night; the first time in 4 years.

Darryl still had no sense of danger which was the most annoying thing because I couldn't leave him alone for a second. Maybe one day he will be winning a gold medal doing the luge event!

Later in 2006 we added in TTFD and saw good gains with speech and social skills and then moved on to oral DMSA to remove heavy metals. Darryl was excreting high levels of arsenic and lead. The side effect of this was increase in yeast to keep on top of but after 6 months this was less noticeable. We have had some strange outputs - high uranium!

Genetic testing we had done in 2007 showed that Darryl had vitamin D problems and glutathione problems. His vitamin D receptors (VDR) and glutathione SNP were absent, resulting in poor detoxification ability. I am sure Darryl's problems are linked to poor detox and him accumulating heavy metals.

In 2008 we continue chelation. Darryl is diagnosed with hypermobile joints. You would recognise this: flat feet, bendy joints at the elbow and ankles. We get him Piedro boots and inserts for his shoes which help him walk much better.

Darryl develops facial tics that are intermittent. What's causing these? Is he detoxing? A bit of research leads me onto PANDAS. PANDAS, or Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections is obviously strep related. Signs would be tics, Obsessive-Compulsive behaviour and strep or throat infections. He tics all the boxes and fortunately for me the NHS in Manchester have heard about PANDAS and agree to test. Woweeeee!

Any infractions in the diet are not showing any side effects. This was a child that would react if he even got a smidges of gluten or dairy.

I am now convinced Vitamin D has a critical role to play. He is so much better in the sunshine, happy , chatty and his bowels are perfect. I am going to pursue Vitamin D theory more now and we are making sure he gets regular amounts of natural sunshine--impossible in Manchester but we may have to travel on more holidays...shame about that, eh?

Jan 08

Not looking like PANDAS but the TICS seem to be fading ..
What that was all about I have no idea...

Still think the sunshine is key - vitamin D or Far infra red rays..
My kid is transformed in the sunshine.
So if thats what he needs..thats what he is getting..
A week in Spain this year for us .

Update 2010

Well a funny thing happened with the tics. Darryl had all the blood tests under the sun and a referal to a psychiatrist.
No reason was found UNTIL.........Darryl said " I have water in my ears"
haha had to laugh really.. If you had water in your ears you would cough and wink a bit to clear it.
So we went to see an audiologist who confirm fluid in the ears and over a few months the tics went and we think the fluid did as well as he stopped turning up the sound on the TV and putting the subtitles on.

Darryl is now a very good reader. He can swim a length in the swimming pool as well.
He no longer does the diet as we dont see any infractions at all now.
He has good computer skills.
His writing is really bad but his grip on a pencil has improved.

We are working on his language and social skills now.
Although we have language his grammar needs lots of work.

He also still has that mischeivous streak in him and needs watching !

The improvements in him have seen our family life change for the better.
He is 10 now. 5 years ago we were praying for him to say 1 word, anything.
We longed for him to be able to ride a bike like other children and be able to express himself.
We wished we could go out as a family to a restaurant, watch a movie.
I never though that the time would ever come when we would be able to do any of this.

I will be forever in debt to the fantastic work of Jean Muscroft - DAN Practitioner, Mandi Rodwell and all the other parents around the work who have passed on there knowledge to help Darryl be what he is today.

I know we have a long way to go but I am feeling a lot more positive now.

Since doing biomed on Darryl I have now taken part in one of Jean's Treating Parents weekends to sort myself out !
Lots of parents were struggling with adrenal burnout so I had taken steps to support my adrenals and am now taking multivitamins myself.

Someone once said to me...

Its like when you are on a plane and the oxygen masks come down..they tell you to put your own mask on first before the child.
In hindsight thats a good plan :)

Joanne