PDD-NOS, & ADHD

Janelle - posted on 03/07/2010

I read your post and started to cry. It also was a relief that we are not alone. I completely understand what you are going through and it also makes me grieve & fear that is a decision that someday we might have to make. We have 4 boys. Our 7 yr old has been diagnosed with ODD, ADHD, & Anxiety Disorder. Our 5 yr old has been diagnosed with PDD-NOS, ODD, Cognitive Disorder so far. My husband and I have talk for hours on hospitalizing our 7 year old during some of his tantrums. When he throws a tantrum it is for hours, out of control & violent. Somedays we feel like failures because he also knows exactly what to say to break our heart. I am dreading when the hormones kick in.
We chose to use medicine after we tried everything and nothing else worked. We have seen a HUGE difference, he is also learning when he needs the heavy blanket to calm him. The tantrums are less frequent and not as violent. We have also found that natural consequences are helping.

With his IEP he gets breaks throughout the day for occupational therapy which makes the evening go better. He tries so hard to hold it in while at school so when he gets home he lets it all out. The OT has helped a little.

We do have a great support system and a team of doctors and counselors working with us.The biggest thing that helped was when everyone (Doctors, Therapists, Counselors) witnessed their behavior first hand. We now have a COACH and also a behavior specialist that comes to our house to help us.

I wish that everyone could have a team of doctors on your side. They even help with the IEP's at school. Everyday I read about their disorders and what we can do differently, because i'm looking for an answer and support.

I wish I could help more and defiantely if you need to vent, feel free.
Janelle

Mary - posted on 03/06/2010

Hi. I have read this with dread in my body. We are parents of 4, an the youngest son is 11. Pdd-nos, Adhd, Social delays, Oppositional-Defiant, global dysphasia (mild speech dysfluancy- with stuttering) Mood disorder, Depression, (psychiatrist and neuro psycologist) both say he May be bi-polar. I have heard bi-polar is Many times Not correct. Whew i hope it's wrong. He has had definate dx of pdd-nos to one questonairre saying no to a psychiatrist saying maybe is, and suggesting i take him to an autism center to find out once and for all what his strength and weaknesses, and dx's actually are, and what to do next. I have called the UMDNJ Autism center in our state of NJ, getting all evals together for them to get an appointment.
Up to now I've done the best i can Without meds...Afraid they will cause a fork down the road we will Never find our way back. I have always wondered, if I had More help along the way, maybe things could be even better than where he's at now. He has come a LONG way since age 2. But still does have problems. He is now being moved out of district placement due to behavior and learning difficulties. He is, now, a loving child that loves to learn new things (IF it interests him). What he wants most ( i believe) is to have friends outside of school. He lost his friends due to behavior reasons.
So now, instead of giving advice for what we've gone thru till now, i am asking advice. What more can i due, do anyone have suggestions to what we can due to AVOID the hospitalization and anger situations you both have now? I hope it is possible. Mary

Michele - posted on 01/10/2009

Benn there, done that.  First thing...DO NOT BLAME YOURSELF!!!!!  You have done wonders so far.  Tell yourself that, and often!  You got him this far.

My son is 18 and is in a residental treatment hospital and has been for the past 8 months. We sent him to a hospital the first time when he was 13 and in the 8th grade.  We had finally hit a point where we could not do it with just weekly counceling and an IEP.  We had firm structure at home, a great support system, and he was working within the local behavioral health system and it wasn't enough.  His temper tantrums were escalating and he was becoming a great danger to himself and to his younger siblings (especially his 7 yr younger sister).  Puberty had hit around 10 and we had begun to see increasingly difficult issues at school and much more frequent bursts of temper.  By 13, we could not do it anymore.  He was in the hospital for 18 months the first time and returned to us with a firm PPD-NOS diagnosis (along with several other tag-ons like oppositional disorder and OCD) and a strong line-up of meds.  Before this hospital stay, they kept telling me he was "possibly" Autistic and had bi-polar disorder....*sigh*....  Things were much better for another year after his stay.  By the time he hit 17, we began to have serious issues with sexual deviancy and his rages returned 100 fold with him now being 5'10" and 210lbs of mostly muscle.  We moved him into a local youth residental home facility that was supposed to help him get life skills, temper control, and a 24/7 councelor on staff.  That lasted about 5 months before he had a rage episode so bad that the cops were called.  Long story short, the psychologist recommended a full treatment facility that could help the WHOLE picture (PPD-NOS, OCD, Rages, sex issues, life skills, schooling, et al...) and would help him past 18.  We took a deep breath and we plunged.  Whew!  His new councelor is AMAZING and keeps telling us that there is HOPE that we did a GREAT job to that point, and that we should be proud of what we had done so far.  He has never had legal issues (court etc...just the cops called that once), never been expelled from school (suspended a time or two...but not expelled) and he is a loving person in his own way and confident, even with all the issues attacking him.  She tells us that without all of that support through the earler years, he would be far worse off than he is and that because of all of that support and structure, we have given him what he needs...they just have to show him how to use it....

Now, I have told you all of this because I read your cry with my heart clenched and tears in my eyes.  I have been in your shoes.  It may have been a few years further down the road, but that is good for you...he is getting more help EARLIER!  Be proud of what you have done so far!  Keep supporting him, but NEVER forget to support yourselves, your marriage, and any other children.  Stay connect, stay firmly in the picture...and don't EVER let the medical community forget that you are his advocate.  You are the one that will be there fighting for him. and it is worth it....it always is...

Stay in touch if you wish....It always helps to know that you are not alone....and you are definately not alone.....