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Don't Trust ADHD Diagnosis

I'm the mother of a 12 year old boy who was diagnosed at age 5 as having ADHD.  Multiple and constantly shifting variations of pharmacotherapy.  Very limited success with psychotherapy.  He is occasionally violent.  He does well academically in school but fails socially.  I am his only friend.  I am the only outlet of his frustrations.  He lost 15% of his bodyweight over the summer and is now 68 pounds.



I am questioning whether this is ADHD or something more serious.  Really, I feel like his combination of his symptoms doesn't have a name that can be summarized in an acronym. I feel like his doctors are forcing his pathology into a diagnosis that they understand and can treat according to some predetermined format. It's not working.



I am looking for some kind of residential facility that could observe him over a period of time and offer recommendations that would actually serve my boy rather than some protocol that serves some majority.  I have resources, and I'm just not getting any guidance that's worthwhile.



Does anybody know of such a place that they can recommend?



Thank you.
9 Responses
757137 tn?1347196453
Your approach is wise. I will what I can find out.
189897 tn?1441126518
COMMUNITY LEADER
    I feel your frustration.  Kind of makes me wonder about the training of the doctors you have worked with.  For example, weight loss is a very common side effect with lots of known ways to deal with it - and it sounds like no one has discussed this with you?   Which also makes me wonder about what kind of doctors you have been working with?  I also wonder about your overall knowledge of the subject - not your fault, I blame that on the doctors.   And, by the way, while all studies show that the best results for ADHD are a combination of meds and behavioral modification therapy, the therapy really depends on who is doing it.
  Anyway, my best resource that I have is this link.  Dr. Parker is someone who I have turned to a lot for questions about medication.  The link is for "Coach Partners", which might prove helpful.  But I would highly recommend reading everything on his site.  The site is -    
        http://www.corebrain.org/corebrain-coach-partners/
   Hope this helps.  Please post if you have any more questions.  By the way, the book I recommend the most for really good general knowledge of ADHD is "The ADD/ ADHD Answer book," by Susan Ashley.  Its about 10 dollars on Amazon (the last time I looked).
  
Avatar universal
Thanks for your response.  It's funny that you mention Dr. Parker because we just left his practice.  My son's weight loss occurred under his care and he also ordered a bunch of tests that no one in the medical community views as creditable.  I feel like the practice philosophy is based completely on generating revenue instead of results.  I have had consults at UVA with a dev. pediatrician and at CHKD with dev. psychologist and still feel like we are missing a big diagnosis because the providers don't get to actually see the behaviors-my son almost always cooperates when we are there during appointments.  I will pick up the book today.  I have been dealing with these issues for 7+ years now and feel like I have a better than average understanding of ADHD, but just don't know where the centers of excellence are for children like my son.
189897 tn?1441126518
COMMUNITY LEADER
     Dang, I really thought that Doc Parker would be able to help with the medication problems, especially the non eating part.  I assume that the last meds your son was on were ones he prescribed? (if so what were they - if you don't mind sharing)  Curious about the extra tests - were they brain scans (that seems to be the latest thing)?
    Normally, its typical for doctors to do teacher surveys, etc when diagnosing ADHD.  I guess that since he has already been diagnosed, they skip that step?  I think that would be a starting point which any good psyc who specializes in adolescent ADHD should be able to do.  I am guessing that is why you want him to stay at a center so he can be observed.   But, unfortunately,   I have never heard of that.  Most places where kids stay are treatment centers for children with serious behavioral problems.
    I am also assuming that things like Sensory Processing Disorder (which looks a lot like ADHD) has been ruled out?
757137 tn?1347196453
Yes, I was wondering about surveys. I am thinking that he should be evaluated at home, in the classroom and in the playground. Maybe he is on the autism spectrum. Kids on the Aspergers end are often misdiagnosed with attention disorders.

Could you surreptitiously record him in his home setting and have the video evaluated? He may be behaving oddly in that environment.

I sent you a long message, but when I went to check it for an answer, it wasn't there. I must have forgotten to hit the "post" button. I had spoken of one of my daughters who had been suffering from "a pediatric ailment of unknown etiology" (meaning they had no idea what was wrong with her). It  took four years and two continents to find the correct diagnosis. Only after that was treatment possible.  So I understand you because I have been there. The most important factor in helping these children is us, the parents, because we never give up. So, no matter what anyone tells you, don't give up.
Avatar universal
If only I could be sure it was only just ADHD. My son had the full testing to include the teacher and parental surveys at age 5 when he was first diagnosed with ADHD.  He has just had them repeated, but has only been with his teachers for 2 weeks so it's too early to report.  He has symptoms of several disorders-ADHD, Aspergers, bi-polar, OCD, ODD.  Our biggest problem is that everyone focuses on his school work where he is a straight A student and has attended the magnet school for the gifted.  I am not at all concerned about his academic abilities.  I am extremely concerned about his social skills.  He does not retain experiences, can't think through situations before he acts-all tell tale signs of ADHD, but he has a very violent component to his behavior.  He does not have the ability to read social cues or value the effects of his behavior.  I am thinking that an inpatient stay would allow a provider to observe these behaviors because my son wouldn't be able to hide them for very long.  I am also looking for a center of excellence for children with behavioral disorders.  I have received a recommendation for Johns Hopkins and will be researching the possibilities of treatment, but I find that parents usually make the best recommendations.

My son has taken just about everything on the market-a lot of off-label use drugs as well-Concerta, Adderall, Vyvance, Foclan,Daytrana, Ritalin-the list goes on.  Dr. Parker's office never weighed him while he was a patient, but did order an immunological study as well as a hair test for heavy metals and trace minerals-both tests were not covered by insurance and other professionals wouldn't even look at the results. A brain scan was mentioned but never ordered.  
Avatar universal
Thanks for your response.  I like the idea of recording his behavior even if I just play it back for him to evaluate himself-most of the time he doesn't recall his violent outbursts.  For example, he lost it in Target several weeks ago and ended up biting me and hitting and kicking my significant other.  After I finally got him home and settled down, he was shocked that he had bitten me and I had to show the bruises for him to believe it.

I can't give up on him because I'm the only person he has. . .
189897 tn?1441126518
COMMUNITY LEADER
   Ya, I can understand why the focus has been on schoolwork.  Its the easiest thing to quantify, and to some extent to 'fix' via medication.  Social skills are a whole different ball game.   I taught 5 and 6th grade for years.  Some kids were advanced socially and others were not.  A child with ADHD is definitely going to have problems socially.  And its not an easy thing to fix, but it can be done.  But its something that I think almost has to be worked on daily and not in a one hour counseling session.  You might want to check out this link and other topics on the site for some ideas on ways to help with this.  The link is - http://www.additudemag.com/channel/parenting-adhd-children/index.html
    Finally, I am curious, given his intelligence, as to if he is one of the younger kids in his grade level?  When is his birthday and what grade is he in?
    And it is not unusual for someone dealing with ADHD to become very frustrated.  Thus therapy should always involve understanding what ADHD  is and how it effects you.  Then it should move into ways of dealing with things like frustration and anger.  That can be done in sessions.  But as far as changing habits or learned behaviors (well, even dealing with anger and frustration) that has to be practiced at home.
     By the way, given how hard you are searching for an answer I don't think that the  immunological study and heavy metals test were uncalled for.  To rule out hypersensitivities and the possibilities of (say) heavy metal buildup is a good idea given your concerns as they can cause ADHD like symptoms.
   This is one other site you might want to check out.  The link is to dealing with gifted students with ADD, but you might want to check out their home page as they are back East.  http://ncpamd.com/gifted-add/
Avatar universal
I am not sure what are the serious problems you are having with your son?

You mentioned briefly that has can occasionally be violent? Unless the violent is particular in severity, it does not sound like this is a consistent problem.

You also said he is doing reasonably at school. Does he still do well when not on medication?

Do you have severe problems with him at home?

I understand that he is apparently demonstrating either poor social skills or lack of motivation to socialize. This by itself is not a major feature of ADHD, and some people simply do have problems socially with others.

You have not said anything that sounds severe about his situation, I am not saying he does not have serious problems but in your post you have not made it clear at all what your concerns are.

I cannot see him being put in some sort of inpatient unit unless his problems are severe. What severe consequences is your son facing/ what serious problems are you having with him?

On a side note, sorry I forgot about the weight loss. How serious is this? Stimulant medications can cause this, a good thing to discuss with your doctor. Does he have some sort of eating disorder?
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