Neds Progress

 


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Ned and us after his first fecal transplant under colonoscopy. Preparing for the colonoscopy was interesting, but our trusting young man accepted the bowel prep and its consequences.

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My confident karate kid, and my boys having a giggle

 

Hello all,

We have had such an amazing time since our last post when Ned and I visited New Jersey for 6 weeks of therapy.

Once back in Australia, I quit my job and home schooled Ned for 2 years in a program called SONRISE. We have also had a great brain re wiring program in place that is fun and energetic.

It was the most amazing experience and we saw Ned’s participation in life excel.

Although he still finds verbalising confronting and difficult, he seeks out our company so much more, seems to understand more and laughs more.

Last September Ned had all of his dental work done under general anaesthetic as he finds the sensory stimulation in the chair too difficult. He is so brave and handles a hospital visit so well. I am constantly proud of the way he just trusts us to do the right thing for him.

Now back in his last few years of school, we have finally been able to organise a new therapy for him, that will hopefully allow his gut flora to normalise. This means that he may be affected positively in so many ways. At the very least we expect that after the fecal transplant, his symptoms of bloating, constipation and incontinence may be solved.

Yes, that’s right, we are getting donor poo and implanting it into Ned. This is used to treat many autoimmune diseases such as Crohn’s disease and MS, but we haven’t done this a lot for Autism in Australia yet. Very exciting.

We are taking pathological and observational data to see if a trial in Australia is justified. Wish us Luck!!!!!

See below, for two kids who couldn’t stand loud noise- they really enjoyed carols by candlelight this year

From left- the most lovely sister Ella, George, Danny, Me(Cathy) and Ned.

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Due to a really low self-esteem from coping with his auditory processing issues, George started a new school, and is now in the good zone as far as NAPLAN goes, is surrounded by friends and is happier than I have ever known him to be.

He is also a well-respected karate participant who can follow complicated instructions and feels confident about his future.