Newly Diagnosed with PDD-NOS

iVillage Member
Registered: 11-12-2007
Newly Diagnosed with PDD-NOS
8
Mon, 11-12-2007 - 2:52pm

Hello All,

My name is Innie and my oldest son Justin (5yo) has been recently diagnosed with PDD-NOS. He also has some sensory processing issues (tactile-seeking, oral defensiveness, proprioceptive, hand-eye coordination, fine-motor control, late establishment of hand dominance -- he is a lefty --, and motor coordination issues). He also has severe astigmatism in both eyes which resulted in amblyopia ("lazy eye" syndrome) and has started wearing corrective glasses a month ago (he may need vision therapy; his checkup is today). And he has mild color blindness (difficulty differentiating dull shades of red/orange and green). He may also be ADHD (his pediatric neurologist has diagnosed him with this as well). I have an appointment with his pediatrician to discuss the ADHD diagnosis (more of the inattentive type rather than hyperactive type) this week and what to do about it. Justin is in kindergarten in our neighborhood public school where he has a very supportive teacher. He is doing OK academically, but he seems to not pay attention and likes to wonder about inside the classroom. He has a chewy tube that seems to help him focus better. Justin is in private speech therapy and occupational therapy; unfortunately, since he is not at the bottom 7 percentile in speech he does not qualify for additional services through the public school system where we live (San Francisco Bay Area). Right now, my main concern with him is his social skills deficits. In pre-school last two years, he parallel played. He did not seem to want to play with other kids. Now in Kindergarten, he seems to like a couple of boys (one in his class and another in another K class), but he is immature in socializing. He tends to invade others' space, has inconsistent eye contact, has difficulty starting or sustaining a conversation, sometimes ignores other kids who want to talk to him, and says inappropriate things to tick off other kids, etc. He is in a pragmatics therapy and a separate facilitated play group once a week.

I also have a typically growing (is the term used "NT"?) 2.5yo son Jayden. I have been married for 21 years (yes, we decided very late in our lives to have kids, and these beautiful boys are the results of modern medical science -- IVF).

I am glad to find this site as I am getting valuable information. Justin's issues has made me very depressed in the last couple of months. I am wondering how you all cope. I also want to see what you think of medicating a child with PDD-NOS and ADHD. So far his speech and occupational therapies have done wonders for him in speech delay and sensory issues, but I have not seen any improvements in his attentiveness or social skills.

Thanks for reading,
Innie

Lilypie 6th to 18th Ticker Lilypie 3rd Birthday Ticker
iVillage Member
Registered: 03-25-2003
Mon, 11-12-2007 - 5:36pm

Hi Innie -

Welcome to the board. I have a child with ADHD and PDD-NOS. Yes, they are quite the challenge with either or both dx. Knowing what is wrong with my son helps me cope. We have to medicate my son mainly for the ADHD. This is a route we chose to do and it has helped my son focus more on his work and his tantrums have decreased (not totally).

My son, 8, still struggles with social issues tho this is the first year he actually spoke of friends or even have one come to our house. Doesn't talk often but once and awhile he'll speak of his friends. Often he is still seen playing parallel instead of with his classmates in the school setting.

He no longer has speech therapy but they have one there if needed mainly for social interaction. He now has physical therapy for deficits in gross motor skills. Long over due. His fine motor skills still aren't the best but slowly improving.

He also sees a counselor outside of the school.

So this kind of a small insight in what we are dealing with. I know is frustrating and depressing especially when first finding out. Sounds like some of the interventions are helping. Its small steps all the way.

Shell


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iVillage Member
Registered: 12-22-2003
Mon, 11-12-2007 - 5:46pm
Welcome, Innie!

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iVillage Member
Registered: 03-27-2003
Mon, 11-12-2007 - 6:51pm

Welcome.

                                

iVillage Member
Registered: 06-25-2003
Mon, 11-12-2007 - 8:25pm

hello Innie and welcome to the board,


Please pull up a chair and settle in for the long haul. We have endless supplies of tea and cookies and there is usually someone around who will listen.


How do we cope? One day at a time, leaning on each other and seeing the funny side whenever possible.


On the medication issue: It really depends on the child and the need. Most of us will try sensory interventions, diet, omega threes and other supplements before we choose the medication route. Some do medicate their children and it has helped them. It is really a very individual thing.


My children (9 and 7) are not medicated.

-Paula

visit my blog at www.onesickmother.com
iVillage Member
Registered: 06-02-2004
Tue, 11-13-2007 - 10:11am

Hi! Welcome to the group! I have a 5 yr old with pdd-nos as well. This group has been very helpful for me. I hope that you enjoy it as much as I do!

Amy~Natalie & Lily's mom

iVillage Member
Registered: 11-12-2007
Wed, 11-14-2007 - 2:47pm

Thank you so much for your warm welcome to this board. I feel like I am not alone anymore. I have a pediatrician appointment today to discuss my Justin's ADHD diagnosis from the pediatric neurologist. I will get her opinions about medicating vs. not. I read up on the new breaking news about how ADHD kids brain that deals with attention and impulse control (executive function) may be developmentally delayed as much as 3 years. I will discuss that too. Again, thank you so much, and you will see me now and then with new posts.

Thanks,
Innie

Lilypie 6th to 18th Ticker Lilypie 3rd Birthday Ticker
iVillage Member
Registered: 10-03-2004
Wed, 11-14-2007 - 3:04pm

Hi Innie,

And welcome. My boy with PDD-NOS is now 10. We started him on a mild dose of an antidepressant at age 8. Before that, everything we had done was dietary and behavioral. Malcolm is a bright boy and has had lots of early intervention and social skills assistance. Currently he is being homeschooled due to terrible lack of appropriate programming in our school district, so we could have considered stopping the meds, but in our case we have seen such a huge gain in his brain connections while using the antidepressant. He is SOOO much better able to see the big picture and reason through his confusion and emotional overwhlems. So, for us, adding medication is been a tremendous boon.

At age 10, Malcolm has many friends and interests. His challenges are still large, but he has a strong healthy self-esteem, endless curiosity and humor, and is a joy to know and parent!

This is a great group to be a part of. Stick around and let us get to know you and your boy.

yours,

Sara

iVillage Member
Registered: 01-01-2008
Thu, 01-03-2008 - 10:45pm

Hello.