just been told my DS has PDD- what now?

iVillage Member
Registered: 04-06-2003
just been told my DS has PDD- what now?
7
Mon, 06-30-2003 - 5:18pm
Hi all,

My DH and I have just come from a conference with a developmental psychologist who evaluated our DS Alex 3 weeks ago. She said he has PDD-nos, and she explained a little bit about it and gave some good recommendations. But from a practical standpoint, I'm wondering where exactly we go from here? I'm not sure I even understand how PDD fits into the autism spectrum and what the usual interventions are.

Alex is receiving speech and play therapy, and we're checking into special preschool programs now. He's 30 months old. What other resources should we look for? Where do you go for help and support? How do you describe PDD to relatives and friends (both "concerned and educated" folks and "just plain nosy and biased" folks)? What are the best ways to advocate for my kid in this big system? What experiences might be good for my DS to get him ready for preschool and/or get him used to interacting with other kids in groups? What advice do you all have?

I'm sure all those questions have been covered somewhere on this board earlier, but I haven't been on since they changed the formats so I'm a little lost. If I'm in the wrong place and you can redirect me, that would be great. Thanks for listening!

Sincerely,

Cathy

iVillage Member
Registered: 01-14-2004
Thu, 01-29-2004 - 10:50pm
Hi Cathy,

Yes, I've been there... not a very nice place to be.

Our DS was diagnosed as PDD/NOS also at 3. We saw 4 psychologists specialized in Autism. They all agreed DS was PDD/NOS.

Then I read that PDD/NOS does *not* exist as diagnosis - it plainly means our children have some characteristics that match the Autism Spectrum, but not others, and since ** no one actually knows **, and they need a label, that's what you get...


I finally found a Neuroscientist, PHD, Specialist Behaviorial issues, mother of 3 "PDD/NOS" girls, who told me the following:

PDD/NOS is not related in any way to Autism because, even though these children present similar behavioral issues, their problem is physically on the other side of their brains.

We're also talking about Beta and Theta waves...

I think this page has a fairly direct explanation of what she means:

http://brain.web-us.com/brainwavesfunction.htm

Anyway, my DS has had OT and ST since, he does Earobics and Brainbuilder everyday and we just started a Neurofeedback treatment, based on this Neuroscientist.

I can't even start to describe the results !

I also started him on Super Nu-Thera and DMG (www.kirkmanlabs.com) about 3 weeks ago, with astounding results.

I have been keeping a diary on DS since I started the vitamin treatment...

His change has been absolutely extraordinary !

- sustained eye contact

- general awareness of what is going on around him

- curiosity about things

- great sleep

- sensory integration at 90% (he even played "diving" in the tub today !!!)

- have not seen any obssessive behavior in 2 days


If you would like to take a look at the Neurofeedback treatment, go to http://www.eegspectrum.com/

Again, I am not certain of what kinds of results you may get with it, but if they are half of what I saw after his FIRST session, it may be worth taking a peek...

It's not expensive here (we're paying $55 per session). According to our Neuro, DS needs 20 sessions of 30 minutes each, once per week.


I wonder - has anyone here tried Neurofeedback ? I know it's been around for about 20 years, but the protocol for PDD, Autism, etc, is fairly recent.

Best of luck !!

Ariane

iVillage Member
Registered: 04-06-2003
Thu, 10-16-2003 - 9:58am
Hi C.

I'm not sure if this post will reach you. We've been so busy this summer that I never actually got a chance to get back to this message board until now! But I just wanted to let you know that things are going well for us and we've found many great resources which I'd be happy to share anytime. I can totally relate to how you were feeling when you posted-- it is so stressful at first and the system can be so overwhelming. And then I had a whole bunch of "professional" people telling me things about my son and what I can "expect" for his future. The truth of the matter is that I know him best, I believe in him and I know what he is capable of. Whenever I get stressed, I hug him and look in his eyes, and I know we'll be okay no matter what.

I hope that things are going well for you, too. Please feel free to e-mail me anytime and I'll send positive thoughts that you also find the great networks in your area that we have found in ours.

Best wishes and best of luck,

Cathy

iVillage Member
Registered: 04-17-2003
Wed, 07-30-2003 - 2:18am
I'm so glad I read your post,though it's not meant for me, it helped made me feel better, I was obsessing with my son's Dx of Pdd-nos, that it's stressing me out so bad, it's all I think about,I think I'm developing an ulcer because of it.I constantly worry, your post only made it clear that my son has a good chance of living a productive life.It won't be easy, esp. the early years.

I myself is married to an Aspie(undiagnose),my dh good qualities far outweigh the negatives. He's a very good husband and father, he's the one who reminds me to not go crazy and take things one at a time.

Bless,

C.
Avatar for queen_brat
iVillage Member
Registered: 03-26-2003
Thu, 07-17-2003 - 4:00pm
Dev means devolpmental? (i cant spell). what is the difference betweent hat a regular ped? How do I find one like that and is that better for a child on the spetrum?

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iVillage Member
Registered: 06-02-2003
Thu, 07-17-2003 - 3:14pm
Hi!

It's sounds as if you are heading in the right direction. My son was also dx'd as PDD at 28 monts, is now 6 yrs old and is doing great- talks, reads , socializes , has friends. Other labels I have heard applied to him and his friends are Sensory Integration Disorder, Speech/lanquage delayed- many people avoid the 'a' or 'p' words. Whatever gets you funded!! We were able to get him into a great preschool ( and then school) for children with these issues - we feel that was definitely the right thing for him. It also helped that the special-ed schools were doing the same curricula as the neighborhood schools but better !! Anyway, I don't know where you live but I would advise you to be open to talking with other moms in the playground, Mc Donald's, neighborhood - mention your son gets speech therapy and I guarantee they will either know someone else or their own kid is- other parent's are great resources and supports. I'm in NY city - I have 4 friends in our apartment complex I know from other places ( work , share babysitter, same building) and we all turned out to have PDD kids. YOu might also try finding a parent group in your area .

Good luck- I know you have many miracles ahead of you!!

Diane
iVillage Member
Registered: 04-06-2003
Wed, 07-02-2003 - 9:02am
Thank you Candes!

I really appreciate the clear information-- that is so hard to find out there in cyberspace! And thank you for sharing your personal story-- your family sounds amazing and special! It's great to get positive feedback about what I know in my heart to be true-- that my DS can lead a happy and relatively normal life (I say 'relatively' thinking about all his off-the-wall relatives-- ha ha) as long as my DH and I are supportive of him and get him the help he needs.

Yesterday we arranged for increased speech therapy and we're looking into developmental preschools because that seemed to be a strong recommendation from the dev. psychologist. We also have an appointment in a few weeks with a dev. pediatrician, so we'll see where that goes. One step at a time-- inch by inch, it's a sinch, right? We are truly blessed to have the resources to do all this.

Anyway, I will keep you (and everyone) posted about our progress. I expect that at some point what I'm learning will help someone else-- that's the great thing about this network.

All best wishes,

Cathy

iVillage Member
Registered: 03-26-2003
Tue, 07-01-2003 - 8:52pm
Hi Cathy, welcome to the board.

You asked where PDD-NOS fits onto the Autism Spectrum. Well, it's kinda hard to say. You see, within the Spectrum there are four diffrent sections: Autism, Asperger's Syndrome, Fragile-X, and 'other'. That 'other' catagory is a loosely held gray area that exists simply because the APA realizes that the deffinitions of Autism Spectrum Disorders are constantly changing and expanding. That being said, one might think that PDD-NOS (which is often described as a 'catch-all') is in the 'other' catagory or that it IS that catagory. But it is no such thing.

PDD-NOS is most closely related to Asperger's Syndrome because both require 'normal cognative ability' and 'high-functioning' classifications. The term High Functioning means that the person is expected to eventually be able to care for themselves on a daily basis or may already be at that point, even though they may still need special accomadations. However, that doesn't mean that the person WILL need special accomadations all of their lives. Most Aspies (the term reffers to both Asperger's and PDD) usually end up leading pretty normal adult lives, especially if they recieved Early Intervention as a child. Most parents of kids with PDD treat their child as if they had AS (Asperger's Syndrome) because the difference is so slight and it's so much easier to find information on AS than is it on PDD.

As far as explaining it to other people, that's always a tough one. I make no bones about the fact that I have family members on the spectrum, but some people are more comfortable with never saying the "A word" at all. My family is a rather extreme case however since the overwhelming majority of it's members are on the spectrum. Of now 27 members assessed only three of us are NOT dx'd with some form of autism, my mother, her older sister, and myself. But we went out and married Aspies, so we might as well be. LOL.

But one thing my family has proven to me is that it is totally possible to lead a happy, productive life with an ASD. My Dh has AS and he holds down a normal job, has a wife, children, hobbies, interests, etc, just like everyone else. My DGM is the same way, she seemes so normal most of the time that it's hard to believe she has AS. But then, she'll do something like get up and walk away in the middle of a sentence and you have to go "Oh yeah!" (forehead slap) LOL. The hardest years for an ASD are the pediatric ones. But with love, patience, and concrete communications they life will get easier and easier for them (and their parents).

As far as support goes, you're here and that's a really good start. Keep hanging around, post your daily trails and triumphs and we will be there to help you celebrate or give you an e-shoulder to vent on. There are also regional support groups where you can get together with other parents of ASDs. You can ask your dev ped for any information he/she might have on them or you can look online. The local children's services or Children's Hospital would also be a good resource for finding people to talk to in person. But this board is always here, we're open 24/7.

What services to get differ from person to person. And as they grow up new issues will arise. Just address them each individually as they do.

Looking forward to hearing more from you,

Peace,

Candes

Peace,
Candes