13 yr old Son ADD?/ what about tesitng accomodations?

[jym626]

emeraldkitty-
You ask some big questions to a big problem that is forever ongoing. I don't know where in the pacifiv NW you are, but there are several ways to find a (hopefully good) neuropsychologist. I don't know if the national organizations (International Neuropsychological Society or National Academy of Neuropsychology) have their directories available to non-members, but it is worth a look. You can also check with some of the big universities if you are near one, and try your physician, neurologist, pediatrician, etc for recommendations. Schools usually don't like to "diagnose" nor give specific treatment reccs, because they will need to be able to provide them. Also, most school psychologists have a very different training background than a neuropsychologist, and same for and educational psychologist- there can be a lot of variability in their training and expertise. Not to say they arent good, it just may vary. I know some edu. psychologists that are very knowledgeable, and some who think they are... (enough said).
I don't know how long ago your testing was done, but you do need to be patient. It takes time to pull together records and get the data scored and the report written.
Lastly, cost is always a delicate issue. Unfortunately, many people cannot afford do pay privately, and their insurance company may be quite restrictive in what they will cover. Most won't cover anything related to learning or developmental issues- they prefer to push you to the overloaded school psychologist. And so the world turns. And yes, this testing is not inexpensive. Paying less than $1000 is actually very, very, very reasonable. I used to participate on a local LD parents network forum. Most of these parents were appropriately frustrated with the public school system's limitations, but they also had some unrealistic expectations for the psychologists. For example, some wanted the psychologist to never use a psychometrist to aid in test administration, they wanted the scope of the testing to address a gazillion questions, the psychologist to come to their IEP and advocate for their child, and expect medicaid to pay for this. That would be nice in some ideal world. Most people charge for their time. These are services that are purchased. And feedback, including the opportunity to answer questions and discuss options, takes time. I wish I had the time to give "a little feedback" to all the patients, families, teachers,tutors, doctors, etc. at no cost. There aren't enough hours in the day, even if it was affordable to do so. Oh, one last thing-- What I do is meet first with the parent and child to get a comprehensive history. That helps provide the foundation of the problems that are occurring and helps me to ascertain what questions should be addressed. You can come in with the list of concerns- you shouldn't be asking for any certain test- that will be determined by the doctor. You don't usually go to your primary care doc asking for specific lab tests- you go in with a list of symptoms and they determine what to do. It is no differenct in psychology. Good luck, and take care of your headache.

[ckr1147]

Emerald...thanks for the clarification..I was not clear on the difference between IE and 504 - thought they worked together...

Anyway...jym makes excellent suggestions...when my son was tested, we lived close to Yale and had access to a top person in the field of ADHD. He began just as jym states - a comprehensive history, talking with my son, H and myself separately, then all together...then some comprehensive tests of son. I think at the time about 4 years ago it cost around $800. No insurance coverage either...

One of my friends who teaches learning disabled students suggested a pediatric neuropsychologist, but we were never able to find one...people didn't even know what it was and we were in a relatively large metropolitan area at the time...
There may be some LD parents organizations that could be helpful - you could go on-line to try to track some local chapters down. I tried to hook up with CHADD,but there were no local chapters where I lived.

it took us literally years to get our son's problems correctly diagnosed...even the school psychologist and educational consultant disagreed (one said possible ADD; one said "extreme gifted-ness")...frustrating to the max, so I can empathize and sympathize with you. We were VERY fortunate to be referred to an expert...

Best of luck - and take care of that headache...hope we have helped...

[jym626]

CKR-
Did you see someone through the Yale Child Study Clinic (or some other branch of the Yale training systems) or did you see this person solely as a private client in their private practice office? Often to get a comprehensive eval at a modest cost, you go to a university-based program with grand-funded clinics that subsidize the cost of the evaluation. Where I live, the universities can offer these for kids and for currently enrolled students (though the pediatric one, if still grant-funded, is a 90' drive away from the metropolitan city) with ,I think it is now either a $500 or $700 out-of-pocket expense.. But they can offer good services at good prices. Yay for grant funding! Its a win-win situation.

[ckr1147]

We went to his office...but I think I called Yale to start the ball rolling...it was several years ago, so I really don't remember all the details...we got a tw0-three page typewritten report, along with test results, graphs, copies of a variety of articles and abstracts...since you are in the field, you may have heard of the person we saw...Dr. Thomas Brown.

[jym626]

CKR-
There are a few folks by that name-- I'll look him up in my directories whenI am back in the office after the holidays. I end up generating a 10-15 pg report. I am impresssed with a succinct one!

[SBmom]

This is all very interesting info. I was referred to an educational psychologist who is considered one of the tops in town. I checked him out with other psychologist friends & he has a great reputation. My son's eval consisted of one hour interview with son, me, & Dad; then about 5-6 hours of tests over three seperate days. We all go back in in about 10 days to get the results in person, along with a written report that includes recommendations. Cost is about $1500.

My son goes to a private school (8th grade) and it was the learning specialist at his school that told us to get him tested. She was brought in by his faculty advisor after we'd all been banging our heads on the wall for months due to his chronic disorganization. The Learning specialist told us he will qualify for more help from the school with a specific diagnosis. Also, we were told, if he is to have accomodations in CB testing, etc, one needs to get this process going now; HS is too late.

There is a University in our town that does this testing (grad students under supervision) for about $400 but we did not want to wait weeks and weeks till they were available... we want a proactive approach up and going with no lag time when he's back to school in January. The Ed Psych could get us in fast so we did that.

We are really curious to see what the diagnosis says. This is uncharted territory for me.

[monydad]

One of our children was also diagnosed with ADD. In our case, the main symptom is procrastination to the nth degree, not necessarily forgetting assignments, etc.

We have some concerns about this, as I'm sure others do as well.

First of all, based on the questions on this ADD test, it seemed to us that half the world would be diagnosed with ADD. How valid are these tests ? Especially since they're based on self-responses, not observations by a clinician?

What makes psychiatrists feel that medication is the appropriate response to this issue, as opposed to working to change the particular detrimental behaviors? (eg finding ways to start work on time like everybody else).

It seems to us like :i) the diagnosis can't possibly be accurate, based on the questions; and ii) it's like a "magic bullet" - an easy answer for the psychologist, to just prescribe drugs, and then avoid the hard work of trying to find what's really wrong, and work to solve that through behavior modification.

It seems to us that our child could easily take all these meds and then still have the problem, since nothing really has been done to address the negative behavior patterns.

How does one know when drugs are the way to go? Isn't a simple test, with virtually no other knowledge of the patient by the psychiatrist, and having tried nothing else, insufficient basis for the psychiatrist to validly make this determination? That's what it seems like to us.

[mom60]

Emeraldkity- we went for years with the testing results that were done by the school psychologist- with a portion done by an intern. We to had a vague diagnosis- at the time his was visual-motor processing problem. We had no idea what they meant but he qualified for an IEP and recieved resource services. Later we went to a educational therapist who said he had a phonemic awareness problem. He went to her for private tutoring and finally at age 10 learned to read.
We let it go for years where he did fair. When at the recommendation of his private school we have him retested they recommended that we do it privately. I did call the public school psychologist who was at the high school he would be attending in the future. She tried to convince me they would test him for free. We went with the private. I got names from sons primary Dr. and also from the learning skills teacher at his school and lastly from my older D's therapist who is a child psychiatrist as well as a psychologist. There was one name that was on all 3 lists. He was a neuropsychologist. My husband and I met with him first and then he saw son alone just to talk. He then did about multiple sessions of testing. He also spoke to son's teachers. Then he met with us again without son to talk about results and about how he was going to present it to my son. Then he saw son alone. He prepared a multiple page report with test results and his opinions as to what course we should embark upon. He also saw son for several sessions of therapy to talk about where son saw himself going.
I think it was about $1600 not including the additional therapy sessions.

[ckr1147]

mom60 - your testing/interviewing sounds similar to what we did...the self-test that monydad mentions is not very helpful...most of us procrastinate, forget things, etc. etc. It is the pervasiveness of the symptoms, how long they have existed, and the fact that they interfere with daily life that is significant - that's why parental input, as well as input from teachers is valuable...

In S's case, he even had problems in elementary school not finishing the most basic in-class work - it was NEVER completed! His only reason "everyone was distracting me..." and he was actually telling the truth...there was no way he could concentrate and block out kids talking, etc.

SB Mom - FYI - when you apply for accommodations from the CB, they will ask for a diagnostic report which has to have been done within three years, I think. The school also has to list what accommodations are being given. Your guidance folks at the high school will know all about it.

We are also finding out that we need to have a current diagnostic report if we want S to qualify for any accommodations in college (like tutoring, etc.) Not sure if he will need to use them, but want to be sure they will be available if needed.

[annie11]

I read today in the NYT that there are new warnings (I think issued yesterday to Drs.) about Strattera and new findings of liver damage.

[mom60]

For us the ADD came on top of some learning disabilities. Eventually the ADD became a bigger hindrance then the learning issues. Son did not have the concentration to do the complete any reading. And the progress was so slow that he did not retain any of it.
We just recently got our accommodations from the collegeboard. I was surprised that it was granted so easily. I don't know what his counselor sent but he was granted 100% extra time and a reader. I was a little concerned as we are now working off a 504 versus and IEP. Your school will have forms from CB that you fill out a portion and the school fills out the rest. They give you the dates on the back of the envelope that it needs to be in by for each test date. The letter from the CB stated that he will have the accommedations as long as he attends the same high school that if he changes schools he will need to reapply.

[jym626]

WRT Strattera- there were 2 reported cases of liver damage out of 2 million users of the med. Both recovered competely after d/c of the med. They have put a warning on to d/c the med. with any sign of jaundice or other evidence of liver pronlems (dark urine, itching, etc).

[SBmom]

Guys, please keep this thread going; I am leaving town for a week but will be back to check in again after Xmas. Happy holidays to all. Your wisdom on this issue is a real gift to me.

SBmom

SBMom,
I am visiting the forum while my son edits iteration 12 of his essay!! I private messaged you but then I read the entire thread. Can I just add a few comments.

Any medical doctor, not just a psychiatrist, can prescribe medication for ADHD. For controlled substances you need to have a DEA #, and even most GP's have those. Plenty of kids, unfortunately, get put on meds as the only intervention without thorough assessment. Medication is a tool. There are a lot of tools that can help people with ADD/ADHD and sometimes medication is indicated, but not always.

As for modes of assessment..there are a couple of options. The more you know, the more ways you can help any child. Assessment should not just generate a list of results of tests. The prescriptive nature of the recommendations is key. Recommendations should address ways to strengthen strengths, develop skills, bypass or accomodate areas of weakness. All of these (especially the first) are key. Sometimes medicine is needed to facilitate this, sometimes it isn't..

Lengthy, prescriptive reports are great for ideas and if you have a fantastic support services program at your school then there might be wonderful implementation as well. However, there can be difficulty putting them into action. Some prioritization needs to take place. YOu might need private support, if you can swing it, to get some remedial work done. This is just a reality and is case dependent.

As far as resources for assessment- beyond a psycho-educational or neuro-psychological assessment (the goal of which is to understand factors impacting learning including but not limited to IQ, memory, language, attention)...a medical exam is warranted. One group of professionals who have not been mentioned are Developmental-Behavioral Pediatricians-- who often do thorough neurodevelopmental assessments and a medical exam both. These are sub-specialist Pediatricians...

Books I'd like to add to the recommended list:

Should I Medicate My Child and Running on Ritalin...By Dr. Lawrence Diller
A Mind at a Time and The Myth of Laziness By Dr. Mel Levine


Both of these Doctors are Developmental-Behavioral Pediatricians.

The more expertise you develop in this area as a parent the more you will see that there are as many different perspectives on this issue as there are people who write about it! This is fine, since no 2 kids with ADD/ADHD are alike!

[calmom]

Monydad, the answer to your question is that if your child was diagnosed with ADHD based on a simple test or questionairre, without more -- then that was an insufficient basis for a diagnosis, ESPECIALLY if the recommendation was for medication.

I mean, I'm an anti-med type parent (I mean as far as my personal lifestyle - I don't judge others for their decisions, but in my family meds of any kind are used sparingly and as a last resort) -- and I also have self "diagnosed" myself and my son as ADD based on our procrastinating ways. If you saw the mess in my house, you would wholeheartedly agree. But I don't think that this is the sort of "diagnosis" that would support medical intervention -- though there's no harm at all in my reading self-help books with ADD in the title or trying suggestions and techniques aimed at trying to curb the mess and get thing done on time.

I think that before meds or prescribed -- or even before extreme behavioral interventions take place -- the initial screening via questionnaires needs to be supplemented by at least a thorough physical medical exam of the kid. (I think Robynm's post is very good and I agree 100% with everything she says). The bottom line is that there are all sorts of medical and health problems -- as well as emotional or mental health issues -- that can cause ADD-like symptoms, and you need to first rule them out before making a decision on medications. In some cases the meds given for ADHD are contra-indicated for some of the other conditions that can be mistaken for ADHD. For example, bipolar disorder in kids is often mistaken for ADHD, but meds like ritalin can trigger extreme manic episodes and make things much worse for the bipolar kid.

Bottom line - medical solutions (i.e. drugs) should be supported by full medical evaluations. It is true that many clinicians do not go this extra step and that, in our society, there is a trend toward overmedication -- this hurts the kids who really don't need the meds -- and it also hurts the kids who DO need the meds and will benefit from them, because the practice of careless, overinclusive "diagnosis" fuels the myth that ADHD is not real or is simply an excuse for poor behavior or organizational skills.