Anyone whose child was tentatively diagnosed with PDD-NOS?

We have a son 21 months who was found to have major cognitive and language delays as well as failing three major and two minor components of his autism test (MChat). My son by all that see him appears "normal" but he does have problems expressing what he wants and he doesn't play with toys much he kind of just runs round with them. So I'm wondering what other children with this disorder are like and if your child was diagnosed did you make any major changes like dropping your current pediatrician for an autism specialist? Also are you going to vaccinate still?Anyone whose child was tentatively diagnosed with PDD-NOS?
I have two sons dx PDD.NOS, they are 3 and 8. They were dx at 25 months we stopped vaccinating and did a year long detox, and at 9 months, this son was born with it and has not received any vaccines.



We go to a neurologist, and have seen a DAN doc. Other docs esp. psychologists are not on board with a PDD.NOS dx. Developmental is hit and miss. We stick with our pediatrician who is traditional but does not require vaccines (most do). We have switched pediatricians several times and are happy with this one



exemption forms are found on this site:

http://www.909shot.com

top left



This assessment questionnaire is very helpful



http://www.childbrain.com/pddassess.html



if you click onto each question a more detailed description is given



My sons score a 52 and 82 currently. The scores improve dramatically after the preschool years. My 3 yr. old was at an 88 at 2.5 yrs, now he turned 3 a few months ago and is already improving. My oldest son at your sons age had a score in the moderate range over 100. Every few months I retake to see the progress



What my sons are like, the oldest 8 with PDD.NOS is literal, he finds things funny that neurotypicals do not, like saying a car fishtails. I know he pictures fish tails on the car, because so do I (aspie) and because he says things like where are the heads, fish heads fish heads. He does have some delayed echolalia and quotes movie lines. He does at times make unusual word choices. Recently he said,"I am retreating to my hovel to retire my thinker". He can have a conversation, is reading on grade level, in a reg ed full inclusion classroom, he has friends, plays typically now, used to line things up, he does have some anxiety. He is not on meds, except premedicating to the dentist. He has ADD.NOS or features of ADD. He is limited in his play imagination wise, but its really not noticeable, its very repetitive, he narrates it himself, he doesn't get jokes, and if you say we are running into a store he says but you don't have sneakers on or I think we should walk. He does score as cognitively delayed, but I question it.



The 3 yr old has big speech delays so did his brother. he was potty trained early at 32 months. He has a lot of sensory issues. He attends a typical preschool and a delayed one so 5 days a week. He knows his abc's, sings them, recognizes upper and lower case letters, has some site words, and shows features of hyperlexia. He likes to play with nontoy items repetitively, if you stop him he gets upset and could have a meltdown without sensory input. He likes to open and close doors, play with the dvd player, get out pieces to the mixer, assemble it and plug it in etc. He likes to watch the same backyardigans videos over and over. He loves music, he carries around a keyboard and an electric drum. He also likes to push cars. He gets sick easily.



The oldest doesn't, at all, get sick. After he was detoxed, he hasn't been on antibiotics in 4 years. And his hair grows very quick. All 3 boys had haircuts the same day, a buzzcut. The younger ones have 1.5-2 inch hair, oldest has 6 inch hair right now.



My oldest also was above average in all domains and had a regression shortly after a combo vaccine. We stopped vaccinating and got him detoxed, that was the biggest turn around for him.



The children with starving brains book is a good one suggested by another responder, I bought it in 2003 at the autism conference.



Also useful:

Why does Chris do that? by Tony Attwood

This is a book to understand some of the behaviors associated with ASD's.



10 things every child with autism wished you knew by Ellen Notbohm

This is a very positive easy read book that is a great 1st book to understanding this complex disorder



and The Oasis guide to asperger's syndrome by Barbara Kirby

this book is more technical, and does hit on the total child. There is info about DAN docs, diet, allergies, detox, chelation, it pretty much covers all forms of possible therapies and is a must purchase for anyone dealing with a child on the spectrum



What your doctor may not tell you about childhood vaccines by Dr. Stephanie Cave. Also met her at the autism conference where she spoke about her journey to become a doctor after her grandchild was dx on the spectrum. No one was helping, so she became a doctor despite being told she was too old. Now she has been helping kids with ASD's for about a decade.



Biological treatments for Autism and PDD by Dr. William Shaw This book is very anti-vaccine. I strongly suggest you do alot of research before giving any more vaccines, always draw titers before giving.



http://www.educatebeforeyouvaccinate.com

http://www.thinktwice.com

http://www.safeminds.org



Please report it, you need the lot number

http://www.vaers.hhs.govAnyone whose child was tentatively diagnosed with PDD-NOS?
My son didn't say a single word until he was three and only then did he put two or three words sentences together. He didn't play with toys he destroyed them. He couldn't keep clothes on. He didn't like to be touched. He never made I contact. He was never affectionate. He would bang his head against the wall. He had repetitive behaviors. He was either sitting on top of something or underneath something. He was extremely hyper and impulsive. His severe behavioral problem prompted me to seek professional help and not with my pediatrician.



My advice would definitely see a specialist. I'm surprised your pediatrician didn't recommend that in the first place.



After being diagnosed with ADHD from his neurologist the school district wasn't very accommodating since his characteristics were so severe they didn't know what to do. We had leaned towards PDD but when he was placed in a class for autism the teacher was surprised and wanted a re-evaluation. The end of kindergarten he was placed in a private school for socially and emotionally disturbed children.



We switched to a psychiatrist at the age of 8 and was diagnosed with a mood disorder and all medication was changed and he did a complete turn around. The behavior stopped, the mood swings stopped and then found out that he a severe learning disorder.



My son will graduate this year and it has been a long and rocky road. You name it we endured it. If there is only one thing that I have learned through this whole experience, AND I WANT YOU TO REMEMBER THIS, is that when it all comes down to it, I'm the only one that cares the most for my son. I am his best advocate and if wasn't for me he wouldn't be wear he is at now. I fought for him, I stood by him and I believed in him. At first I always asked, why me? And then it came to me, if he had anyone else as a mother he might not of survived.



If your son truly has a disability please don't let the system take over. You have rights as a parent and there are educational laws that give you specific rights. Don't let anyone push you around. He is your son and you want the best for him and he deserves it. If for some reason something doesn't seem right to you look into it. There are plenty of organizations that will guide you.



Educate yourself.



I'm sorry this is so long but I'm passionate when it comes to this stuff, I don't like to see people go down the wrong path. Thanks for listening I hope I was a help. Anyone whose child was tentatively diagnosed with PDD-NOS?
I have a 27-month son he has recently been diagnosed as PDD-NOS, his symptoms: lack of talking, no pointing, did not answer to his name 8/10, no pretend play, tippy toe walking, loved to spin wheels, and terrible eater.



My family struggled for almost three months to accept the truth that our son does have some problem, as he not only looks "normal", but before he was six months old, his eyes looked extremely bright and sharp, he behaved more maturely than other same age children. However, the lights in his eyes faded away gradually since then. Now he looked under his age...



As for other kids I read about on variant sources, their symptoms are quite different from each other. I am trying to find out the causes of my son's disorder, however I figured out that I really need to go to a responsible and caring doctor for professional opinions. They will run a lot of tests for him and our family medical history for his treatment. I would recommend you to go to www.generationrescue.org and Check out these books:



Kenneth Bock, The 4A childhood Epidemics

Jaqueline McCandeless, Children with Starving Brains

Brian Jepson, Getting to the Heart of Autism

Elaine Gottchal, Breaking the Vicious Cycle



I am still new to this area, and hope it is helpful.