Newly Dx 6yo Son PDD NOS/ OCPD/ ADHD/ GAD

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Hello,

I am very new to all of this! My son Joseph is going to be 6 in about two weeks. He was just diagnosed OCPD, ADHD, PDD-NOS and GAD. I must say that I have KNOWN forever that something was different about him but yet could not get ANYONE to listen until recently when I took him to a child psychiatrist.

We have not talked meds yet as that will be the next visit. I have taken him to about 3 psychologists who would not diagnose him as anything other than quirky and anxious. Usually they blamed my parenting.

He is a very, very intelligent 5 year old. He talked very early and taught himself to read at about 4 years old. He reads above a fourth grade level now. He went to pre-k and his teacher mentioned that she thought he was ADHD or on the spectrum. I have always known that something was going on but could never get anyone to listen. He was very slow to potty train and still has to wear a night time diaper to bed.

I took him to the school board/early intervention when he was around 4.5 and they tested him and said that he passed all the social interaction tests. That was probably because he has no problem talking to an adult but if they would evaluate him at school they would see that he RARELY interacts with kids his own age. He would rather play and hang out with mom all day than deal with other kids.

He just started Kindergarten about a month ago and is doing fairly well. His teacher requested a parent/teacher conference and asked if I knew that he was showing signs of the spectrum. I almost jumped out of my seat and said that I have been saying this for years but no one has ever listened. I told her that the school board early intervention passed him saying that he was too smart. She was very informative and said that she will be an advocate with me for my son, she is fowarding it to the proper ESE heads.

Sorry this post is so jumpy, I am just overloaded with this and it is hard to put it into words. He has been stimming (hand flapping and a "pffft" noise that he makes) since he was born really. He only does it when he is excited or happy. Playing video games, or watching videos. Anything with cars. I asked him why he does it and he said because he is happy and that it means he is happy. So far he has only done it once at school when they were using a magnifying glass. He has always been obsessed with cars and knows every make and model. He has chilled out a bit on that in the past year and now is obsessed with Mario brothers, he even has a game on his laptop where he builds his own levels, he would do it for hours if I let him, probably days. He fixates on the number 8 recently and loves to only listen to "track 8" on every cd in the car.

His teacher says that he is ALWAYS well behaved and he gets good reports everyday, never less than perfect. But he is a rule follower till the end, if you tell him to do something one way he will never forget it and will do everything by the book. An example is that at the end of the day at school all the kids line up and sit on a line by grade outside. If they are being picked up by a parent that is waiting for them they are to raise their hand if they see their parent. I am always there before the bell rings so he sees me when he comes out. He will usually sit on the line and wait until the teacher sees me or recently he has begun to raise his hand. He will not get off the line until the teacher goes over to the line and asks for his hand and walks him to me. He also will not walk into the school alone even when he sees the teacher outside her door about 10 ft down the hall. He has very high anxiety and is afraid of loud noises, speakers, pools, bowling alleys and anything new. I took him to Disney for his 4th birthday and it was a sensory overload.

I guess this is enough for now, I am nervous as to if I should put him on meds for his anxiety and ocd, along with adhd meds. He has never been on anything in his life. But his teacher says he has a hard time concentrating and that he gets "lost" moving from one thing to the next in class. When the go out on the playground he rarely plays with the other kids and just kinda walks around on his own, against the fence, in his own "world".

Sorry this is so long!

--Megan

Hi Megan, I am really glad you are getting some help now *hugs*

I'm not going to get in to the inevitable drugs/no drugs debate but I can share our decisions with our kids to see if that helps you at all.

We have 2 ASD children with various other issues including sensory issues, ocd, anxiety and major depressive disorder. They are 11 and 15 now and going beautifully but it was a rough road and I'm sure we will have a lot of hurdles to go.

We chose not to go the medication route because I wanted them to learn to recognise their feelings and then have strategies in place to deal with them. Medication was detrimental to that so we said no.

Over the years they have chosen their own 'go to' things. Ie. when my daughter is depressed a cold glass of lemonade with a slice of lemon and ice is an immediate mood lifter as is sunshine, 'Charmed' and going out to meet with friends.

When my son is anxious he gets a glass of water, plays with the dog or researches a new game on the computer. With the OCD I will allow them their little things but not if they become an issue, when that happens we buckle down for a week or two of exposure therapy. He can't sit still so when we do schoolwork he sits on a fit ball.

We have found that for every behavior there is a non medication route but every child is different and what works for one may not work for another. It doesn't make you a bad parent to use or not use medication, listen to your instincts, find other people's stories, do your research and follow your heart.

LizzyLoo makes some great points!

My kiddo is a lot like yours. When he was little he would become very obsessed with one number, or one object. As he got older, his interests changed and we were able to find things that he loved that were also things that would be interesting to his peers. Using his interests as that bridge will probably be very important.

He is very bright as well, reading at the same age. Follows rules to the letter and hates when others don't. Teaching him to be flexible with himself as well as others has been an important part of helping him make friends at school. Issues at school would not be behavior related, but rather trouble with executive functioning, inferencing, and changes to schedules. These are all things that can be supported and skills that can grow.

My kiddo is not ADHD though, or OCD. The obsessive nature is just his form of stimming. It feels good to him and makes him happy. Of course, if I didn't give him boundaries then it easily turns into meltdowns or anxiety.

I think medicating this young, at least for my kiddo, is not helpful. It has been crucial for him to have these feelings and learn how to cope the best he can. Understanding how his emotions work, and that he has control over the choices he makes has been very beneficial. If he is older and says he wants to try something then of course it is his choice. For now he seems happy and has learned a lot through experience and support.

It is interesting that they have diagnosed him with so many things. I wonder why they just didn't leave it under the PDD-NOS umbrella? The lack of attention in class may be due to being bored, distracted with perseverative thoughts, or even sensory issues. Getting lost from one thing to another in class can also be from the same things. It would be interesting to see other member's thoughts on that. It has been a current topic....misdiagnosis between ADD and ASD.

Last edited by SC_2010 on 25 Sep 2011, 12:17 am, edited 1 time in total.

unless you made a mistake and meant to put OCD instead of OCPD

i sugest you get a second opinion

personally i would find a diagnosis of a personality disorder in 6 year old very suspicious

even if it is ocd and not ocpd i would reccomend another opinion

also is thedoctor very experienced with autism spectrum disorders? many doctors who arent have a very steryotypical view of asperger's and if it isnt exactly like what they imagine it to be will diagnose pdd-nos along with a bunch of other diagnoses especially when you say this is a psychiatrist are known for this i reccomend find a developmental psychologist or someone who specialized in autism spectrum disorders or someone from a big autism clinic


please i beg of you get a second opinion for your child



i dont know your location but if you are in the US there is the autism society of america website that will give you resources all over the country and from your local chapter of ASA (autism society of america ) you can get names of doctors who are actually familiar with the autism spectrum

http://www.autism-society.org/

Last edited by Ravenclawgurl on 25 Sep 2011, 3:13 pm, edited 3 times in total.

i just wanted to point out that ocpd and ocd are not the same thing, but your original post references both. there is some overlap in traits but they are distinctly different, and ocd is an anxiety disorder whereas ocpd is a personality disorder.

i had the same thought as SC_2010, that they seem to have pegged your son with a lot of diagnoses all at once. there are co-morbids that are pretty commonly seen with asd, but to get 4 at once is pretty surprising to me. most of the issues you describe fall right into line with the asd: the sensory issues, transition difficulties, interacting well with adults, being lost in his own world, not playing with other kids, special interests, being excessively rule bound. these are all common in asd kids, even without all the other diagnoses they have put on your child.

as for meds, just because there is a diagnosis does not mean meds are warranted. if he is functioning well, they shouldnt be necessary. even if he is not functioning optimally, the school should address his difficulties first with accommodations and support, not medication. i wouldnt even entertain the thoughts of meds at this point, instead talk to the school about what can be done to address any issues from a non-invasive stand point.

i HAVE to ask... what is the mario game he has where he can build his own levels? my 5 yo autie is very much like your son, and his first special interest was anything mario. he has mostly moved on to other characters but i think he would really enjoy such a game.

Thank you so much for the responses!! I really appreciate it. I went to the library today and got several books on Aspergers and Autism.

I did make a type when I put OCD on the bottom, the doctor said OCPD, I am just used to putting OCD due to my own diagnosis of OCD. The doctor stated that they are very different and explained that he believes Joe has OCPD not OCD. I am hoping to get more information on the next visit as this was the first visist.

I am very hesitant to put him on meds due to several reasons:

I myself am on antianxiety meds and have been since the age of 17 and I don't want him to be like me and be on them forever.

He is still growing and changes all the time, why medicate him when he is still a young one, what if it changes who he is.

Sorry for the late response we were out at the library. Which in itself was a battle. He screams if I try to take him somewhere new. Gets really mad at me and tells me that we can't go there. Gives me a bunch of reasons why we should stay home, or he tells me that we should go later. Later being never. I finally go him to go by telling him that it was either come with me or stay home and go no where.

But the strange thing is when we get there he is fine. Its like the fear of new or places that he has only been to a few times makes him so anxious. (he has been to the library about 3 times). He even remembers what books he got last time, names and all.

Sorry, I appreciate everyones responses and am definately not running to put him on meds.

Thanks,

Megan

@azurecrayon

the game is called Super Mario Brothers X or (SMBX) he is obsessed with it. He has made like 100 levels of his own, even puts custom music in the levels. He really loves watching videos on youtube of other kids (usually teens i think) making custom levels!

momtojoejoe,

re: going new places, my son is the same way. he kicks up a big stink about going, but once there he is usually fine - like 90% of the time. It is so frustrating and challenging sometimes! Right now he is adamant he is not coming on a big one month vacation with us (like he has a choice, he's 9 ), but I know once we get there he is going to have a great time.

Thanks also for sharing the name of the video game. My son was recently obsessed with Minecraft and studied all the youtube videos to the point he now thinks he knows everything he needs to know about the game. Because of that, he has now moved on to Lego Universe, which *finally* came out with a free trial. So perhaps once he's had his fill of that, I will steer him in the Mario direction

We've been dealing with the anxiety for several years now, we finally started on meds last spring because of major panic issues. I am still on the fence with the whole med thing, I recognize that he does need them and I do see where they are helping in some areas, but I also see an increase in certain behaviors that make me reluctant to look at increasing the dose as I have been instructed to do. Thankfully I have a very supportive pediatrician We refused to go the meds route for quite a long time because we really felt we needed to try everything else to help first (and we did!). It is such a personal decision, what works for one family does not work for another - you will figure out if you need the meds or not.

cutiecrystalmom

I can't speak to the meds issue, because we're still figuring it out ourselves, but a social skills class taught by a speech therapist might really help him learn how to interact with other kids.

Thank you Zette, he actually has an IEP already in place, when I took him for evaluation for spectrum issues, the only thing they found was that he had vocal cord nodules which causes him to have pitch breaks, raspy voice. So he actually started speech therapy when he started Kindergarten, I will see if they have such a class at his school!

Thanks!!

You might have to look outside the school for a social skills class. Look for a speech clinic that focuses on autism. In CA at least, insurance is required to cover speech therapy for a dx of autism, including "social communication" class.

I didn't see anything in your post that jumped out "medication" to me. I admit I'm really conservative with it, and neither of my two kids has ever taken anything (one is ASD, school diagnosis, and the other probably undiagnosed ADD and mood disorders). If a child can learn to manage their issues without medication, they have a more permanent tool.

That said, medication can be a life saver for kids having a lot of trouble functioning in life as it comes. But the stories I usually hear with that are pretty extreme, not just "has trouble focusing" and "has trouble with transitions." My son had both, and we were able to effectively manage both without medication. There was a time around 4th grade I came really close to changing my mind, but the school found him an excellent anger / stress management group, and after that he did miles better. My general philosophy has been try every trick in the book first, and when those tricks don't work, then look at medication.

My guess is there are still tricks you can try. Things to ease transitions, ways to manage anxiety, things to ease potential sensory issues.

But, we don't have all the facts: you do.

dont be so quick to medicate....medicating a child should be a last resort thing.
I watched a video on frontline on PBS and it basicly said that kids brains are still devloping up into the teens and these drugs have totally different effects on a developing brain than an adult brain. Plus side effects like tics are very common with psychiatric drugs but when given to a child, these side effects DONT go away once the medication is stopped.

I have OCD/ADD/ASD myself and what woeks better than anything is the zen buddhism practice of mindfulness meditation.
Dont worry, it is just a mental extersize of fully being in the momement and refocusing attention to the moment you are in when a thought comes in, no worshiping involved.
I suggest you find someone who teaches mindfulness.
I have seen a kid bouncing off the wall with ADHD outa this world and could not sit still long enough to learn anything, go from that to being totally calm and teachable after 6 months of mindfulnress training.
It works wonders for me too...it is my sanity.

It has proven scientificly to work with OCD...no reseach has been done on ADHD and minfulness, but I seen it work for that too.
It has alsp been proven to work with soldiers with PTSD....which is also an obsessive type disorder.

Plus you dont have all those chemicals affecting the development of your son's brain.
Psychatric drugs were not designed to be used on a developing brain....from what I read on here from other teens with ASD...they can cause more mental problems than they treat.
One boy here was put on ADHD meds and it made him aggresive, so they diagnosed him with bipolar, so he got put on bipolar meds, then those meds made him halucinate, so they put him on anti-psychotics...and it just got worse from there. Finally after leaving home years later, he quit taking his meds and found himself to be a logical rational person.

Medication should really be a last resort thing.

Jojo

Both of my boys have anxiety issues and both are on Prozac (fluoxetine), 20 mg/day. I would strongly recommend trying the Prozac or another SSRI before going to another anti-anxiety drug because it's side effects are milder. This drug is an anti-depressant and med for moderate anxiety. It is very often used to treat selective mutism (one of my older son's anxiety issues) and OCD (my younger son's main anxiety issue.

Intuniv is a time-released form of guafanicine. This is a stronger anti-anxiety drug and will produce sleepiness, and in some, weepiness. My kids use Clonidine, in the same drug family, at night.

Risperidone and Abilify are FDA approved for irritability caused by autism. These are atypical antipsychotics and can cause sleepiness and difficulty concentrating. However, some kids need these drugs.

Finally, Ritalin and other stimulants used to treat ADHD can be tricky in a child with anxiety. My older son had a very poor reaction when we tried stimulants--his anxiety went way up and we had to discontinue the stimulants as anxiety was a much bigger issue for him than ADHD. Anxiety is a natural side effect of stimulants.

Hope this helps.

Isn't it true, though, that the ADHD stimulants have the advantage of leaving the system totally once you stop them and have no long-lasting side effects - and also, after conferring with a doctor you can stop them without "dialing down" the dosage slowly?

Seems like all the other drugs need to be very carefully controlled, take a while to start working and There's a strict procedure to stop taking them once you're on them, and that sometimes the side effects can continue after the drug has been discontinued.

At any rate, I'd agree with the second opinion (though it sounds like this is your fifth or sixth opinion) and I would suggest you have him assessed by a pediatric neurologist - we were lucky to find a hospital-based program specializing in developmental disorders that included a pediatric neurologist and an developmental psychologist, along with a whole host of therapists with different specializations - we found it through our insurance company. Autism Speaks has a state-by-state listing if you're in the US, and if not there are generally autism societies in each country.

Well, it is true that it takes about 2-6 weeks for Prozac to reach a therapeutic blood level. However, it sounds like they are absolutely sure that an anxiety thing is going on, not just ADHD.

People I have known with kids with classic autism or on the lower end of the spectrum either have a poor result with stimulants or they need to use them in combination with an anti-anxiety med.

Also, with a child with a severe anxiety disorder, such as my younger son's OCD, you may find that he starts paying attention a whole lot better if you get that under control--no stimulants needed.

With my older son with classic autism, when he was put on ADHD meds, he had not yet been given an IQ test and had undiagnosed learning disabilities. Putting him on ADHD meds at the same time as Prozac just made it difficult for the doctor to correctly adjust his Prozac dose and figure out what drug was producing what effect. The Ritalin made his anxiety attacks more severe, causing the doctor to increase the Prozac, increasing the side effects of both drugs.

http://www.drugs.com/ritalin.html

According to the above link from drugs.com, people with severe anxiety should not use Ritalin. OCD would qualify as a severe anxiety disorder, so I would use caution with giving Ritalin to a child with this comorbid psychiatric disorder or any other severe anxiety symptoms.