I need help here. PDD-NOS?

Desire - posted on 08/16/2010

Yes Education is a major Key. My 10yr son was diagnosed with ASD/PDD-NOS as well as Auditory processing, sensory integration,ADHD,Intermittent Explosive disorder, Impulse control disorder, OCD, LD, Short term memory retention of 30 seconds.

It is very hard..Because of our new state law "no child left behind" they keep passing him on due to his size, because he is tall. He has been passed to the 5th grade, but only functioning at a 2nd grade level. I am also a single mom. He is on permanent Disability-SSI. He is going to a Day Treatment School year round, he receives OT at home, has Individual and Family therapy, and now we are doing intensive home therapy...as last resort to keep him from going to a PRTF...Social Services here, there idea of helping is take your child then put services in place. So it has been rough for us. and yes Medication is key and knowledge. He still wets the bed at 10yrs...due to medication.support is a big key as well. I have become pro-active and contacted my local NAMI to form a Parents support group for parents with small school age children with mental health learning disabilities....His Therapist has helped me find services for him...to her I am thankful...Especially for getting a TEECH Evaluation.I would advise any parent with these diagnosis..to educate yourself...not only on the diagnosis, but the treatment, medications, and service providers. A good service provider makes a world of difference. A Poor one will hurt your child's progress tremendously..We found out the hard way through trial and error. Because of the SEVERE Mood disorders, and behaviors I am no longer able to hold a 9-5 job. So I am now working at home, which I can chose my hours which fits my schedule best. It makes it very hard when you have weekly standing appointments with therapists almost every day of the work week.

Kristen - posted on 08/14/2010

I know that all kids are different. I know not all respond to every intervention. I know some kids eventually need meds. In terms of anti-viral and anti-fungals, yes, some are meds and some are natural. My only point, was simply to get him fully evaluated before just simply putting him on meds. My niece had this same OCD behavior. She had scabs,bleeding, all over her body (mostly her arms and legs, but then began doing it to her face). With a full work -up blood, genetic, food allergy, etc. we were able to see some major issues in terms of diet and supplementation as well as therapy - that allowed her to stop the picking without pychtropic drugs. Yes, some need it, and this may be one of those cases - but I never suggest straight meds without full evals and medical workup. You are very lucky to be working with Dr. Neubrander - he is a wonderful doc and I wish u every success with your son. But, as you mention, your son is bipolar - which I don't believe this mom knows as of yet - since she is just starting out. I don't want to get into an argument with anyone - as we all are doing our best on this journey - and as we agree - no child is the same or responds the same to any one thing. And I am not against meds either. In some cases, they are what's best. In this instance, because the mom is just at the very beginning - I merely am suggesting she get all needed tests done and proper evaluations so she can make an informed decision. My heartfelt best to you and yours.

Patty - posted on 08/14/2010

Sorry Kristen, I understand your viewpoint, and I do agree nutritional supplements and glutein/casein free diets can assist with the overall autistic behavior symptoms, I truly though believe there is not a magic cure for autism. I'm in NY and we have a Dr Neubrander in Edison NJ who is top notch and gives B 12 injections, some kids respond beautifully, some not at all..it's all a matter of trial and error, My son is on meds and it's helped his bipolar which is severe, Kristen, I appreciate and respect your conservative approach, I should reword, a good, qualified pediatric psychiatrist SHOULD eval him for an OCD med IF other avenues do not work..Anti fungals and anti virals are "drugs" as well..OCD meds could help the tics, and stims, I know all about stims, my 13 year old has the rocking, and facial twitches, eye blinking, etc. It helps him stay calm in his own rhythm, I don't agree skin picking to the point of bleeding however is an "acceptable" or valid type of stim, it is self injurious, which can lead to bad and dangerous infection, THAT is why in this particular case, I still stand by my opinion that he really does need an intervention ASAP with psychiatrists that see this all the time..if the med doesn't work, she can always discontinue it..none of us know long term affects of any med, whether it's an antifungal, antiviral, a vaccination, coca cola, coffee, diabetic meds, high blood pressure meds, or psychotropics. here, the benefits of proper brain balancing meds just may outweigh the chance of a long term risk..

Kristen - posted on 08/13/2010

I disagree with the above post about just getting him a med for the OCD. I have worked with many children who have had various OCD behaviors (including self-injurious behavior) that have abated just thru special diets, supplementation, anti-fungals or anti-virals and therapy. It may be his particular "stim". Meds are not the only solution and should be used as a last resort after doing a full evaluation in all areas. There are no long term studies as to what some of these meds do to children in the long term. You are just beginning. Get all of your information and answers first before just giving the child meds.

Patty - posted on 08/13/2010

your son sounds like he has severe compulsive self harming skin picking behavior,,he needs a med for OCD to help him stop harming himself. it's not his fault..don't just stop at psychological eval, he needs a full NEUROPSYCHOLOGICAL..or a developmental pediatrician..my son was also just 5 when dx with Asperger's, you say when he stops talking he can be dx with autism, that's pure nonsense, a child can talk and still have autism, PDD-NOS simply means he doesn't fit the exact criteria for a specific type of autistic spectrum disorder. My son is also PDD-NOS..that IS a diagnosis on the autism spectrum..it may just not be classic non-verbal autism. By the way, all those "separate" dx you mention fit on the spectrum, do some more research and get him services and evals done at school..he probably will require a paraprofessional/speech and language, counseling, maybe O.T, find out what your school district offers, he will NEED you every step of the way to be his advocate and above all educate yourself..

Kristen - posted on 08/13/2010

Hi Marsha
My daughter was diagnosed with PDD-NOS just before her 3rd birthday. It is on the ASD spectrum so he will qualify for services. My daughter is now 9 and "recovered". I have become an activist of sorts over the last 6 years. I am a "rescue angel" for generationrescue.org and help parents just like yourself get information on what you can do in terms of diet, nutritional supplements, resources, etc. I have worked with DAN dr's,, scientists and researchers and even helped put together a line of great tasting drinkable supplements to help kids on the spectrum as well. I also occasionally speak to groups and share our experiences and journey. I would be happy to chat with you if you would like some links, resources, a shoulder - feel free to contact me anytime - 925-325-4159 Hang in there - there is much you can do to help your son. Kris

Horice - posted on 08/12/2010

My son was diagnosed with PDD and ADHD. He is now 11 years old. He has never stopped talking. Also, PDD is a form of autism. I don't know if you have him in an early intervention program but that is what helped my son. He is now mainstreamed and pulled out of class for his PT and reading. It took a while but his anixety has improved with help at school and behavior modification. It is ok to be frustrated but keep fighting for your son. Good luck.

Sarah - posted on 08/12/2010

OK...first of all, PDD-NOS is on the autism spectrum. It is basically saying "he has many symptoms of autism, but not enough for a diagnosis of classic autism or aspergers". My (almost) 15 year old son got the same diagnosis almost 4 years ago. A lot of the "alphabet soup" that he has also been diagnosed with are considered "co-morbid" with autism, sort of *part* of the autism spectrum diagnosis.

You definitely want to contact the local school system and ask them what services are available to you and your son under IDEA ( individuals with disabilities education act). Also contact your local Board of Developmental Disabilities and ask what services they offer that you might be entitled to. My son with PDD-NOS was entitled to a grant of $4,000 a year to cover medication, therapy, therapy tools, etc related to his disability--including pull-ups that he wears at night ( he also has a bladder condition). My 4 year old has a speech delay and was also given $4,000 a year. His pays for his year-round speech therapy and a special pre-school day camp at the beginning of the summer. If he needed any therapy tools, it would pay for that too!

The best way to make you feel less frantic and out of control about the situation is to read as much as you can about autism. Tony Atwood writes some very good, very "medical" books about autism. They make my head spin. There are books that are geared more towards parents that will help explain things in a way you can understand.

No one likes putting their kids on medication, but once you find the right combination, life is so much better.

Julie - posted on 08/11/2010

most of those other diag. that seem so overwhelming all sound like part of autism to me.....I'm sure after 7 yrs. of dealing with our autistic son that if they wanted to split up his diag. I'm sure most of those would trickle out. My son is obsessive, can't keep his attention/difficult to get his attention, has mood swings/melt downs, and has gone more than 18 hrs. full speed w/o sleep (long story)..my son also rips band-aids off and picks his fingers/bugbites. ask for the autism diag... apply for children's SSDI from Soc. security talk to his doctor about what meds might help him (my son takes a few...monitored every 3 mo. its pretty safe) Find him a good pre-k that deals with autistic/AS kids socializing him and getting him a strict school routine are 2 great things to help. My son has prgrssed....he's learned sooo much in school. He reads uses computer programs specialized for autism to do spelling/lang. arts, math etc.. he always has a personal aide and even has an adaptive pe class as well as a reg. one. He spends 50% of his day in reg. class and has a ball. He's now 9 going into 4th grade in just a few days; don't loose hope if I think of our son at 5 I might not think it was the same boy if I didn't know any better despite the autism still causing issues.. You'll always have issues to deal with.... but it does get better as they get older our son even began talking last summer and this year rides a 3 wheeled bike! Keep positive our son is a great kid and irreplacable Anyway write if you need any more help...I'm on facebook at julie willis-duckett God bless good luck!!!

Donna - posted on 08/09/2010

My son is 6 and has a PDD-NOS, ADHD, SPD, Dyspraxia Diagnosis. We have faced a lot of these same behaviors and I found that Liquid Bandage was a lifesaver. It is harder to get off than normal bandages and so keeps the wound cleaner longer. I found the web to be a huge help with my research. There are also a lot of Occupational Therapy tools available to give your son something to carry around to pick at instead of himself. Just do a search on Occupational Therapy and there is a wealth of info at your fingertips. Some of the tools you can even make yourself from things you have around the house. Good luck it is definitely an opportunity to stretch yourself and what you think your limits are. Just know that you are your childs best advocate and trust your gut...it is most often right when it comes to your little angel.

Jane - posted on 08/09/2010

As far as his PDD-NOS goes, that is on the Autism spectrum. What to do is to check the resources already listed here, and also your school district, as they have an obligation and programs to treat the symptoms, like the picking. The other stuff tends to be co-morbid with our kids, and that's just part and parcel. Many, if not all, of those symptoms are treatable and will improve with treatment. Some treatments are available, as I say, through the schools.

Don't forget to take care of you in this stressful time. A coffee out with friends is great for stress relief, a hot bath - you matter too, and if you don't take care of yourself, who is there for your son?

Sandy - posted on 08/09/2010

I have 4 kids with diangnosis. The twins have Autism and PDD-NOS. I have two older boys with ADHD, anxeity, dsylexia, & other learning disabilties.. and possible OCD. Many people are against medication, and I was too while they were younger. Both older boys (16 &8) have been on meds for Anx and adhd and our world has changed 100% for the better.
Also at Natalie stated, check into your local Human/Social services, I had a disabilties worker that is wonderful. I qualified for programs I never know existed. I dont know where I would be today without her help.

Natalie - posted on 08/09/2010

Now that you have a diagnosis you have a tremendous amount of resources that have opened up for you. One of them being this forum. First of all your son doesn't need to stop talking in order for the doctor to diagnosis him with Autism. He can be diagnosed with it now. More importantly you can get an IEP (Individualized Educational Plan) for your son. An IEP will help set up goals for you son that should include speech, occupational, cognitive, and if needed physical therapy sessions with trained specialist. I would start by contacting your local ASD (Autism Spectrum Disorder) center or talk to your son's pediatrician for specialist that work with children that have the disorders your son has.
Your going to have to become your son's biggest advocate and that means that your are going to have to start to educate yourself about the issues your son is facing. You can do this by going to the library and finding books about ADHD, ADD, OCD, ODD, Anxiety, and Mood Disorders. I recommend the DSM IV. The DSM stands for The Diagnostic and Statistical Manual of Mental
Disorders. Most libraries have copy of this book. You can find it in the mental health issuses of your library. You may not be able to check it out of the library, but you can read it to get some background information on these disorders. The Internet is a great research tool to have. One website you can go to for help looking up these disorders is the American Psychological Association's website at apa.org. Not only does this website provide information on just about every disorder under the sun it also offers information to parents on how to deal with them.
If you can try to search the Internet for local resources in your immediate area. You could also try the Dan Marino Foundation's website to look for resources in your answer. There is a ton of resources in your area. If you pediatricians can not help you try your local hospitals, mental health centers, and social services. I know when people hear social services it worries them, but it is not a bad thing. Social Services can be another avenue for you to explore to find help for your son as well as vocational rehabilitation centers that work with children and adults with mental and behavioral disorders.
All of this is new to you and may be quite scary, but don't worry there is help out there. If you need don't hesitate to open up another chat on here. We're all ready and willing to help.