Correct Diagnosis? such as ADHD, PDD, Aspergers, ODD, OCD......

[cleveburgh]

My son (oldest of 3) is 9, and in 3rd grade.  We noticed developmental issues at about 3 yrs old, relating to speech.  He was diagnosed with verbal apraxia, and continues to get extra help.

His behavior issues began by age 4, and were related by us to his problems in speech, that he was simply frustrated and acted out in response to frustration.

By Kindergarten, we had more concern.  Acronyms such as ADD, PDD, ADHD, ODD were tossed around.  A trip to pediatric neurologist was suggested, and we then heard PDD (autistic spectrum disorder).  His behaviors suggested ADD, mostly impulisivity, etc.

We've trialed two ADD stimulant drugs to curb his impulsive behaviors, but ended up with a kid on speed!  The non-stimulant ADD drug Strattera seemed to make a nice impact on his attention span for school work, etc., and he remains on this.  

In 3rd grade, inappropriate touching, noises, etc. made an return when school started.  A new evaluation (more expenses!) resulted in a diagnsosis of Asperger's Syndrome.  Doctor OK with Strattera, but added Risperdal to the mix, as his touching/kissing of students now comprises a diagnosis of Obsessive Compulsive Disroder, to go along with ADD and Aspergers!  

Risperdal caused him to sleep every afternoon, develop a very tired look, and had no impact on any behaviors.  

I'm out thousands of dollars, only lucky that I can afford it.  I don't know what else to do.  I still have some belief that he simply can't express himself due to his speech issues, and has developed these other behaviors (touching, kissing, blowing) as a way to express himself.  Unfortunately, those ways lead to fights, time-outs, and the principal's office.  

He has no friends.  His self esteem is largely intact, but we are very concerned.  He can't play sports.  He loves to read.  He's a very sweet boy to those who know him, but exhibits such frustrating behaviors that each day is a struggle.  He wets his bed 75% of the time.  

He deals so well with his younger brother (6) and sister (3).  But if a peer shows up, he might very well stand in the corner making bird or elephant noises, and then approach only to blow in his potential friend's face, and smack his butt!  

Is there an evaluation worth investing in to unlock my child from this hell?  Or am I left just managing symptoms?

I feel the doctors take each appointment's info for 2 minutes, and prescribe a new drug!  I don't like experimenting like that on my child!  Friends say eliminate dairy and wheat gluten.  Any truth to that?  

What is worth my investing in at this stage?

many thanks............

[Nik02]

Has anyone ever suggested doing a karyotype?
Many boys who are 47XXY are often misdiagnosed  as ADHD, PDD, Asperger, etc.  

While they may display these characteristics, it is important to know whether something like an extra chromosome is present and at the root of the problems so that proper care and guidance can take place.
Nik02

[bongo835]

A related discussion, how to treat touretts at home was started.

[mumuv3]

I just want to let everyone know that aspergers, ADHA, ADD, can also get confused with Non Verbal Learning Disorder. My son was informally diagnosed with ADD by his Dr. A year later I paid a nice amount of money to get a pyschometrical test done on him and the tests came back that my son has a Non verbal disorder. He does not understand 65% of what goes on around him, he does not understand facial expressions,body language,voice fluctuation,he has no organizational skills. It is detrimental to be sure to get the right diagnoses before starting to treat a child with different meds. It really saddens me that for 7 years my son went through a lot of heck not comprehending life. He was punished plenty at school, to the point that we changed his school 3 times because he was pegged as being behavioural. Since his diagnoses, his current school is great, he is not on meds yet( I am still researching ) But it is looking up. Good luck to all you that are going through what I have already been through. I realize it is still a long haul ahead as this disorder gets worse as years go by but I am at least now on the right track.

[NJParent]

Also helpful:
    Wilbarger approach "Brushing Technique"
       prescribed by the school Occupational Therapist
       This is like a massage with a brush - it is done
       every 90 minutes at home and in school. It seems
       to calm him down, stop him from chewing on his
       shirt, and generally redirect him (and the teachers)
       to more positive activity.

[NJParent]

Your child sounds similar to my 8 year old.

My child is in second grade.
Positives:  
   Smart, reads, gets along with his sisters (mostly)
   plays games, helps around the house (sometimes),
   enjoys school (often), plays Piano, engages in
   conversations, likes Boy Scouts
Negatives:
   Wets his bed, gets very upset when something is
   changed or missing or broken, will not do some
   school work (such as creative writing), yells and
   throws tantrums when upset, very picky about food
   (eats primarily peanut butter and jelly but must be
    of correct brand and type), refused participation in
    karate, soccer, and other group sports.

He has been diagnosed as Asperger's by a Neurologist,
Psychologist, Developmental Pediatrician and social worker.
ADHD and ODD were brought up as possibilities but we do not
believe it.

This is what has helped:
    Social skills group (taught by social worker, weekly
         meetings with 6 similar children to talk about
         and act out proper behavior)
    Celexa medicine
    Discussing all activities with him first and
         if he is still upset about them we skip them.
    Agreement by school staff to preview work, supply
         in-class full time aide.
    My wife and I have read books by Tony Atwood and
         gone to see him talk.

[gcplap]

I noticed that you mentioned the cost of medical bills.  We were in a similar situation with my three year old.  We were going through genetic testing and etc. and we didn't qualify for medical assisstance or social security b/c we always just missed the cutoff for income and we had insurance through my husbands employer.  We then just happened to hear about the Loop hole program through a speech therapist.  You can be a millionaire and still qualify (if you have enough proof that your child has special needs).  We live in Pennsylvania and I had to contact our local assistance office.  I can't tell you how much this has helped.  They will also go back I believe three months and pay for those medical bills as well.  I hope this helps some.  Good luck!  I know it is tough trying to get a correct diagnosis we are going through it too!

gcplap

[kerryanneo]

Cleveburgh,
I was very concerned to read of your family problems. I was also very concerned to read of this possible misdiagnosis. Have you considered Tourette Syndrome? ADHD (with or without the Hyperactivity,)Obsessive Compulsive Disorders, etc., are all associated behaviours of Tourette Syndrome.

Many of your child's 'innapropriate' behaviours you will find in reading about Tourette Syndrome. Please check out the Internet for more information. You may also contact me for more information on the disorder.

***@****


Kerryanneo

[sheloudre]

Was reading a comment of yours regarding a question about ADHD - which my son has been diagnosed as - and i tend not to agree with. But, sorry for my ignorance, but what is a karyotype test?
And what would it entail? I live in Canada and am not sure if it would be available - but am going to ask my doctor. My oldest is on Dexedrine and tends to have lots of side effects from it. Would love to know if he really needs it.

[Kevin Kennedy, Ph.D.]

At your son's age it is now possible - in a way it might not have been earlier in his life - to pin down with more accuracy the pertinent diagnoses. Your overall description lends support to two diagnoses: (a) ADHD, and (b) a condition along the PDD spectrum (which, as you probably know by now, covers a lot of territory). Your description does lean in the direction of Asperger's, which is one of several conditions along the PDD spectrum. The OCD diagnosis is not so clear from your description, though of course I'm not in a position to disagree with it. To a certain extent, it is helpful to achieve clarity re: diagnosis, but some symptoms cut across a number of conditions. This can be particularly so when a child displays symptoms in several categories (such as Disruptive Behavior Disorder - of which ADHD is one type, PDD - of which Asperger's is one type, and Anxiety Disorder - of which OCD is one type). It might be more helpful to place primary focus on the symptoms per se, because it is the symptoms, not the diagnoses, that are treated. If the Risperdal (which can be helpful to address some symptoms with Asperger-type kids) is not helpful, then it makes sense to stop it. He should definitely be evaluated (if he has not already been) by a child psychiatrist. It's possible that one of the serotonergic medicines (e.g., Prozac, Celexa) might be useful. Relative to food allergies, some children do display mood and behavior problems that may not be directly attributed to a food or food group, but which may very well be exacerbated by ingestion of certain foods. A generally helpful supplement, if your son does not eat several portions of fish each week, is Omega-3 fatty acids, which can be obtained via fish oil supplements (do not use the flax seed variety).