regression and recurrence

[battleautism]

My son regressed massively from (a bit shy with strangers) normal bilingual social chatty boy to mute and autistic in just a few months after a bout of infection at the age of 3 and a half. Anyone with this experience out there? We have been diagnosed with acquired autism, childhood disintegration disorder, autoimmune neuropsychiatric disorder and brain injury leading to autism - al diagnoses would fit it seems. Pretty devastation for all of us as it feels like we lost our son and now have another child with special needs and autism.

I was also wondering if some of you who did experience a clear regression in a well functioning child before the regression - if you have had the misfortune of more regressions in the same child later on, and if you have had the horrible misfortune of this repeating itself with more children in your family? There is very little knowledge of recurrence rate in sibling of regressive autistic children and though I am a doctor and a scientist, I cannot find out this information from the so called experts!

Thank you everyone.
battleautism

Hi battleautism,

My DD was diagnosed at aged 2 and a half, but we had concerns from about 20 months. Looking at it now, there were some things that were not right from about 14 months, initially just one (fixation with wheels), slowly developing to two (lining up stuff) although they happened on a very sporadic manner. Aged 18 months approx., she stopped singing along (finishing the verses for us) and counting with us. Just from one day to another. We just thought it would come back. I have videos of my daughter aged 1 and she tried to copy what you were doing and was looking really, really bright eyed and focused on what you were doing, and smiling for the camera. I was told by specialist that one of the possible causes is autoimmune disease, I do know that around Sept last year she had a week when she was really withdrawn into herself, and her lowest. Since then she's improved lots, babbles, has echolalia, smiles, eye contact, but has ASD. She did have a massive regression/setback caused by our house move last summer (change of routine, nursery, environment) that affected her diet, etc - took about 3 months for her to get over it. She is our only child - we've been told it's usually 1 in 100 children, 1 in 80 boys and 1 in 300 girls. So apparently, having a girl gives us 1 in 15 - am still hoping to be a mummy again in the future, not only for us but to help support her and love her in the future.

Hi FutureMum,

Sorry for not responding, we all came down with colds and in our situation that is pretty stressful.

I was just thinking I do hope you get to be a mum one day of a healthy child. But I would probably get some genetic counselling if I were you, maybe do a genetic array... I would also read 'the autism revolution' which may have some good tips, depending on what you think. Also folinic (better than folic) acid may be helpful for months before and after conception.

It is so hard to loose your child to this disease, as it changes their very essence. They are not just a child with a sickness, they ARE the sickness. I hope for both of us, our children will get better and we will increasingly see their real selves in the autistic fog.

I am just looking into mitochondrial dysfunction. It seems much more common in regressive autism. have a look online. www.mitoaction.org/about-autism-and-mito

Take care and keep on helping your girl.