Pervasive Developmental Disorder (PDD)-not otherwise specified

[Stella]

Hello everyone, haven't been on here in a while. Well I finally have formal diagnosis for difficult child which is Pervasive Developmental Disorder (PDD)-not otherwise specified. difficult child'S psychiatrist presented difficult child's case to a room of about 6 or 7 other psychiatrists (which is what they do in complex cases) and they all agreed on this diagnosis. I was just wondering if there's many on here whose children have this diagnosis and if there is any advice you can offer from your experiences.

difficult child'S main issues are her behavioural rigidy (everything has to stay the same, she can't handle change), she also finds it very difficult to make decisions when are two equally attractive options, she has a lot of Obsessive Compulsive Disorder (OCD)-traits, and has bed-time rituals etc. She also has very poor emotional regulation and gets angered very quickly over seemingly nothing! Any help appreciated.

Thanks for reading,

Stella

 

[Estherfromjerusalem]

Good to see you again -- it's been a long time.

One of my grandsons has this diagnosis. He is highly intelligent, does well in school scholastically, but his social skills need nurturing. Luckly his mother is a Special Education teacher so knows what to do, she is wonderful. Sorry I can't give you any advice (I am not involved in the upbringing of any of my grandchildren -- there are too many of them and I am worn out from bringing up my own children, the great finale being difficult child!!).

So I'll just send you a hug -- I remember your daughter from that time at Fran's. I still enjoy remembering that time, and have a special feeling for those board members whom I met.

At least you have a diagnosis now.

Are you still together with your boyfriend? You didn't mention him.

Love, Esther

 

[Stella]

Hi Esther, thanks for your reply but I think you may have me mistaken with someone else as i've never met anyone from this forum. As far as I know here is another Stella on here though..

20 grandkids?? wow!

 

[Marguerite]

I remember your case from earlier posts though. And I'm not surprised. I would have thought Aspie, however girls are nororiously difficult to diagnose because it does manifestdifferently in girls. They seem to cope differently, I do think it is a gender difference in brain wiring.

As for what you do from here - general advice for autism or Pervasive Developmental Disorder (PDD) is what to look for. Every case is individual so you take what info seems to fit and discard what dosesn't. Always re-visit the stuff though, because as she matures you will find some things tat didn't fit before, may fit later.

Also, "Explosive Child" is a great book to help you with the practical day to day management of her difficulties in adapting to change, in discipleine in the apparent lack of respect (it is not insolence, it just looks like it, do not allow it to upset you or you will lose focus on the real issues).

I posted at length on another thread for a fairly new person, a few of us have written some general ifo there on how these kids tihnk and what NOT to do.

http://www.conductdisorders.com/forum/showthread.php?t=29744

See if any of that helps.

Marg

 

[Estherfromjerusalem]

Stella -- my apologies.

Now I understand why you "didn't mention your boyfriend" -- ha ha!

And I still send you a hug -- anyone on this board is a huggable friend of mine!!

Love, Esther

 

[susiestar]

I am glad you finally know what you are working with. Not that your daughter has Pervasive Developmental Disorder (PDD), but that now you know what road you are travelling.

Some children with autism do well with no medications. Others need medications to help with some of the symptoms of autism. One mom, MidwestMom, is very much against medications because her son was on a huge number of medications before they found out he is on the autistic spectrum. He suffered from terrible side effects.

My son, Wiz, truly NEEDS his medications. He battles depression every day. Without medications he is very suicidal. We have not done a full medication wash on him EVER because he becomes so suicidal that he is a huge danger to himself.

He also has a huge amount of ADHD and is on a medication for that, plus a third medication to help him sleep because he just doesn't ever sleep.

So each child is different. You will get TONS of info from every side. The key to all this info is YOU. YOU know your child best, not the doctors. They know conditions and diseases and medications. YOU know your child.

IF anything is suggested or prescribed that doesn't "feel right" or that you have a strong negative reaction to, then stay away from whatever it is. Many of us here, including myself, have learned the hard way that MOM is the expert and if she feels it is wrong then it is wrong. Period.

I am not talking about the "Oh we tried that with Dr. X and it was useless", I am referring to that deep NO feeling in the pit of the stomach. That visceral feeling that wwhatever it is is just not a good fit for the child or family.

You will find a lot of great info here. Be sure to browse through the archives!

 

[Stella]

Thanks so much for your replies. I have read that entire thread Marg and you and others offer so much helpful information and advice that I would never be able to get anywhere else (I don't personally know of anybody else with an autistic child ) so thank you. Also, I think it's time for me to have another read of The Explosive Child.

I guess it's time for me to change my signature too now that we have a diagnosis!