Messages posted by: Samsdad

My daughter is nonverbal (7yo) and very high functioning. She is fiercely independant and her problem solving skills are very high. She is affectionate, playful and her expressive language and non-verbal communication is very good.

That said, she is also subject to tantrums, including some self-injurious behavior (head-banging, pinching) but how much of that is due to frustration because of he lack of speech or her being manipulative is anyone's guess. I say manipulative because we have seen her looking in our direction when she does these things and we try to ignore her.

My daughter is also NV and dx PDDNOS. She is very affectionate and social. She is also prone to tantrums, OCD behaviors and meltdowns (not as often as when she was younger). My wife and I find that these tend to manifest themselves more when she is sick.

Remember, a lot of this could be the result of frustration due to the inability to sufficiently convey his thoughts. How's his non-verbal communication?

I would also look into seeing what his Strep titers are. Strep is directly linked to OCD and it's tendancies. PANDAS would be another thing you would want to explore as well.

I'm just speaking from experience here. But look in those directions and ask your physician what they think about it.

I thank you sir!

Dr. Law,

Would you be able to provide me with any information about the minocycline trials that are being conducted at Johns Hopkins? Any insight would be greatly appreciated. If you wish you can provide me with your response via email at autismcosupport@gmail.com if you feel that is more appropriate.

Thank you for your response Dr. Law. I look forward to hearing more about those new forums. Autism Speaks maybe?

BTW, I really admire what you and your wife are undertaking here. It's nice to see someone who is directly affected by this in the medical community grabbing the bull by the horns.

My daughter had major issues with texture at that age too. If it wasn't "wet" food, she wouldn't eat it. She has since moved on from that, so have faith.

Are there any plans to expand the topics to include different ASD-specific discussions and treatments? Maybe see about starting a parent-based Wiki that could serve as a resource for parents?

The reason why I ask this is because there really is no definitive group or site for parents to obtain information and discuss what they know. At least none that I've seen.

Only thing I can think of is that your doctor felt your son was PDD-NOS because he viewed the original diagnosis of autism in a Kanner's classic sense, which is correct in my opinion. Autism is a PDD, but your son may not line-up with the hallmarks of a autism diagnosis. A PDD-NOS diagnosis is usually for someone that doesn't fit into one of the other four PDDs, which are Aspergers, Autistic, Rett's, and CDD.

Many parents refer to PDD-NOS children as autistic. Many do not. I fall into the latter group.

My daughter is PDDNOS (7). I'm hoping IAN will lead to great things.

Will the IAN project function as a database of some sort for parents as well as researchers? I have always felt there was a need for this for comparative research. It could provide valuable insights. How many times have you wondered why some kids share the same behaviors (tics, stims, etc) for similar situations? The head-pressing and banging when they are angry (frustrated?), throwing themselves to the floor, full-body nodding, it goes on and on.

And what about similarities during onset? Whose kids were sick when they received certain vaccinations? Are they prone to repetitive illnesses like strep or ear infections? And who is using what therapies and treatments?

All this and more would be invaluable, imho.

Our daughter: Had Thrush at 2 months and brochialitis at 4 months, requiring antibiotics; strep numerous times and then scarlet fever as a toddler; molluscum contagiosum on her forehead from 6 months to about 2 years. She is prone to multiple, long-lasting rashes and significant bowel issues which have improved, but continue to be a problem. That all said, she has never been a sickly child and has always thrived.

She is non-verbal, with sensory integration delays. She has very good non-verbal communication, incredibly resourceful and a great problem solver. She is also very affectionate, playful and athletic.

She has been on a biomedical NIDS protocol for 3 years with good results that have plateaued as of late.

There's a lot more I'd like to share, but I fear I have rambled too much. Maybe the moderator could dedicate a forum just for this kind of dialog?