PDD-NOS

My 6 year old son was just diagnosed PDD-NOS.I am participating in IAN research knowing that every bit of information is important and some day it may help my little guy!

Thank you for participating and placing some of your hope in my team.

I have a 15 year old son diagnosed with PDD-NOS when he was 4. I too want to echo your sentiments. If there is anything we can do to further research into a cure or treatment for this disease let us know.

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?

My 3 year old was diagnosed by a developmental pediatrician to have mild autism. We then went to a neuropsycholgist who did different tests including an EEG brain scan and disagreed with this diagnosis and was positive he has PDD which he believes my son has a better chance of recovery with proper biomedical treatments.

My question: is this a fair prognosis, considering that PDD is still under the autism spectrum

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.

Hi, this is Connie, the IAN Community Facilitator. I just wanted to stop by and let you know, as you discuss diagnoses, that there is a lot of detailed information on the various categories in the "About ASDs" section of the website. If you are interested in the specific criteria for, and descriptions of behaviors associated with, each diagnosis, I invite you to visit http://www.iancommunity.org/cs/about_asds/

As you will read there, part of the trouble is that we have not yet pinned down "meaningful subtypes of autism" based on genetics or neurology, etc. At present, we just have descriptive categories: a kid that looks like this has "Asperger's"; a kid that looks like that has "autism"; and a kid that doesn't quite fit in one of those has "PDD-NOS." This is why boundaries blur, leaving parents confused and research results muddled. Think of it as mixing apples and oranges and kumquats and kiwis and then trying to draw logical conclusions about the category as a whole. Fortunately, there are efforts underway to identify more meaningful subtypes of autism. See http://www.ucdmc.ucdavis.edu/newsroom/releases/archives/mind/2006/Autism%20Phenome%20Project%20Facts.pdf

Connie (IAN Staff) wrote:

...At present, we just have descriptive categories: a kid that looks like this has "Asperger's"; a kid that looks like that has "autism"

..."and a mom who looks like THIS, probably has a son with Autism..." (OK, not useful, but laughter is good too)

I also would like to strengthen the echo of this cry for a better understanding of this ASD, and increased discovery through a "free-style community" built by experts and those of us affected.

My son Robert is a 7-year old boy; dx: PDD & ADHD. His twin brother Andrew has no diagnosis, and appears to have no challenges of his own (other than co-existing with his twin's special needs).

Robert was diagnosed at age 4 by the medical field
(Developmental doctor, Psychologist, and Neurologist)
Our school district just as of 2007 chose to officially recognize the ASD. Up until that point they would only recognize ADHD & "Other".

It is amazing to me how the school system (at least here in Texas) clearly separates their understanding and diagnosis from the medical field pertaining to diagnosis and special education needs. Both ridiculous and frustrating is an understatement for addressing their view. It is my opinion that we would reach success faster should they (the school system) join forces with the medical field, instead of engaging this derailing attitude!

It is my hope and aspiration to help advocate a relationship between those of us whom live with ASD, the Medical Field, and the school system to achieve success by improving the quality of life for those facing this ailment. And to project hope for the possibility to someday have the ability to omit/prevent this ailment all together.

I just hope that soon we will find more reasons why PDD happens so frequently in boys.

I now have hope, more research is being done to help find out why this happens to my boys! I'm walking and raising awareness in my community and I hope that IAN & the other research firms finds some answers for us soon.

Thanks for holding this forum for parents of children on the Autism Spectrum.

Also, I wanted to thank you doctors personally for all that you do for us.

My sons are 11 and 8 and both fall on the autism spectrum! PDD-NOS and HFA

My youngest son has PDD-NOS and ADHD. I have a total of 4 sons, my oldest and 3rd sons have ADHD and my 2nd is normal functioning. It's a circus here. I also thank you for this forum. All we need now is a chat room or do you have one?

Hi littlemama! Welcome to the IAN Discussion Forums.

I'm afraid we don't have a chat function at present. I'll have to add that to the list of things to consider for the future!

i wanted to part of the research for our pdd/nos daughter,who is getting much better because there are others who may want to hear our story to see what what we are doing different that may help someone else. Our daughter has gone from being two and half year old with a six month vocabulary to now 5 year old adhd child with a speech of the "average" kindergartener. But from ages 3 to 4.5 she took 90 min of speech at ppcd besides 1 hour of private speech at home. We also took care of all her seasonal allergies by having the allergy prick test.

Hi yasmine's mom, and welcome to IAN.

Thank you for your participation in IAN Research. I am so glad to hear of your daughter's great progress. There is beginning to be more and more evidence that some children with autism spectrum disorders can make significant gains as a result of intensive early interventions.

I am participating in the IAN research because there really is not a lot of people out there who know what you are going through or what to do about it. I have a 5yr. old daughter Faith who was diagnosed with PDD-NOS. We do not have the money for the therapy that the doctors say she needs and we are considered over the income limit to receive help. It is very hard to watch your child struggle and not know what to do. I am hoping to learn a lot from this site.