Answers? Not here!

[Malika]

Well... my alternative title for this post was "Bemused and befuddled"... Even more than I have been.
So... this afternoon we had the long-awaited appointment to see the pediatrician at the hospital in the nearby largeish town. This, I thought, would be the route to a sensible diagnosis, or the ruling out of one. Picked J up early in the afternoon from school and he went to sleep just as we were arriving at the hospital. Had to shake him awake and, as always when he is awake but wanting to sleep he was calmer than usual... The doctor seemed... how can I say? Jovial but somehow not very emotionally engaged. What do I know? First impressions... however, instead of a serious consultation, what I got was a longish philosophical discourse in which he said the following things, after I had first given him a short report from J's teacher in school in which she said that he was spilling over with energy, needed constant supervision, was frequently in trouble for being too brusque with the other children or not respecting the rules of life in a group (report written around Oct of last year, I think he's probably less turbulent now) but that in class he remained seated, concentrated well and finished the tasks he was given without problems. This set the tone for the doctor who immediately said that on the basis of this report he would never prescribe Ritalin because it was only to help children study in school not to make children calm and less trouble. Fair enough... but I am not seeking medication right now but rather a diagnosis, which I said to him. Then followed an interesting but philosophical speech on his part about how labels were not good things, that it was up to me to take on the responsibility of bringing him up and channelling him whatever doctors said about him and that on the basis of what he saw J could never be called hyperactive. J sat quietly for some of the time - so bloody untypical, wouldn't you know it - but then did get up and was playing around with the controls on the scales, which did not seem to bother the doctor at all. I told him this was untypical and that I was looking for some certainty, some understanding. He said I would never have certainty... That no-one really understood ADHD and it was to some degree subjective. He said often what was called ADHD was just over-masculine boys or a certain temperament... He seemed quite uninterested when I talked about the physical hyperactivity, the impulsivity,etc. Just said that children were difficult to raise and that is just how it is... I told him about the child psychiatrist locally who had said she was virtually certain J was ADHD within half hour (I am seeking a second opinion because really she is not very confidence-inspiring either) and apparently she is the local expert on ADHD!! He seemed to find it funny when I said I wanted a diagnosis and just said there was nothing to be done and I couldn't have one...
So I now have one doctor saying he almost definitely is ADHD, and another saying he almost definitely isn't and in any case tough luck, and a third saying he is hyperactive but that is because I am divorced and he is trying to be the man of the house!! I can take my pick, I guess...
Where do I go from here? I've now run out of all the possible local sources. Really it's enough to make you give up and go home.

 

[InsaneCdn]

OK, I do NOT know if this is an option for you or not.
Seriously? If I could have come up with the money, I just might have done this myself...

There are a number of top diagnostic outfits in Britain (no less!)... that do take out-of-country patients.... and might provide a more balanced perspective.

 

[Ktllc]

Oh, Malika, I'm so sorry. Really. I wish I could give you some advise on where to go. If it makes you feel better, over here V is getting more and more diagnosis but not really more help/interventions. I had posted about the terrible reality that almost everything will depends on MY interventions and teachings.
I just want to smack that Doctor. But what good would it do?
Many times, I really had to think hard about the kind of help I am wishing for. For me, it appears that I mainly want people to acknowledge that somethings is off. I want people to hear me and take my opinion into account. A few examples: teachers would just accept my advice, visitors (family or friends) would accept that our household runs differently and controling the environment is key to V's well-being.
Malika, you're going to have to be strong and accept that YOU are is biggest help. YOU can do it and don't need anyone's approval.
You are becoming better everyday at "reading" J. No one can take this away.
Have you read the out-of-sync child? If not, I suggest you read it.
V does not self regulate, so I have to do it for him. Right now, he is napping but a lot of factor needs to be in place for him to fall a sleep: relaxing music (ie: spirit of the earth), close the curtains, no other noise (even unplug the filter in the fish tank), and he goes in his cocoon (look up cocoon swing, mine is home made with a simple t-shirt fabric). With ALL that, he is able to sleep and hopefully not be too overstimulated later in the afternoon.
Go home, but don't give up! We are all here for you.

 

[AnnieO]

Just a note... Based on ONE consult... A doctor can know NOTHING.

When we first took Jett to the neuropsychologist, he was so age-appropriate I wasn't sure who this kid WAS. You see, out of a normal situation, children behave out of normal patterns. Some flip out and get worse - some become almost "normal", like Jett and apparently your J, as well.

This is why most docs here, rely on parent and teacher input, and several visits...

 

[garrison]

We had to do a "conners" rating for Mr. I.. I filled out the questionair and so did the teachers. Our pediatrician met with us and showed us the interpratation of the data. This is how a diagnosis is made here.

 

[whatamess]

I wonder if you can request the local adhd expert to evaluate some ADHD rating scales that you and the teacher fill out? Also, if you are not seeking medication, then the lack of diagnosis might not have relevance. I know you'd like to be able to show the teacher, but as you have seen by your visits to multiple sources, people are kind of stuck in their thinking no matter the evidence presented. It seems like that teacher would not accept the diagnosis anyway. You have reasons to believe that J has adhd and so I would carry on as if it were so.

 

[Malika]

To be honest, I think an evaluation based on the Connors alone is also rather risky. They do use that here and the first child psychiatrist made reference to it - in time as there was no sense of urgency to arrive at a diagnosis. The evaluation of ADHD in France seems very uneven. I belong to a forum here for parents of ADHD kids and some of them report having a whole battery of evaluations before an ADHD diagnosis is arrived at... more than I've heard you speaking about in the States, actually. But in my particular neck of the woods, it all seems a bit retrograde. Just the luck of the draw. I don't know at what point I'm going to give up trying to get a diagnosis and just accept that J is going to be seen as turbulent and me as a bad parent...

 

[BusynMember]

I agree with taking him for an evaluation outside of France, if you can. Doesn't seem like they have a respectful understanding of "differently wired" kids. Sounds like it all considered the parent's job, even if the child is different.

The Connors alone can not diagnose anything. If I were you...you have family in the uk...maybe try there. I don't know how they feel about diagnosing children, but it is certainly in my opinion worth a shot. In the US, he would have no trouble getting diagnosed. France seems to be the most stubborn country I've heard of in that regard. And, yes, I do think it is part of the culture...the philosophy seems to be...kids are what YOU make them. That's so untrue.

And a diagnosis. is not just for the sake of a label. It is so that educators and parents can know how to parent the child. It especially gets touchy in the preteen years. You need to often parent these children differently, but the schools often have to help out too and accomodate. There is more to differently parenting/educating a differently wired child than just medicationi.

It sounds very frustsrating. I'm sorry.

 

[keista]

Just a note... Based on ONE consult... A doctor can know NOTHING.

EXACTLY!

Malika, you've got one instant ADHD diagnosis, one instant nothing is wrong diagnosis and one Freudian nonsensical diagnosis. Each of thes was done in just a few minutes with no actual evaluations done. I'm sure you can find some of these evaluations online for free and do a better evaluation yourself. A dart board would do a better job than these yahoos! I know the one that was done on my kids was online because I looked it up (Vanderbilt II I think)

in my opinion what you're looking for is a second opinion. One to confirm that first tentative diagnosis that you received. *MAYBE* the reason you're not getting it is because that's not really what J's issue is?

 

[Bunny]

...that I was looking for some certainty, some understanding.

I have no answers for you (guess I'm no better than the doctor, huh?) but what you wrote just struck me. I think this is something that we're all looking for. Certainty and understanding.

 

[Malika]

in my opinion what you're looking for is a second opinion. One to confirm that first tentative diagnosis that you received. *MAYBE* the reason you're not getting it is because that's not really what J's issue is?

Yes, that's right, I'm looking for a second opinion. J is indisputably physically hyperactive, impulsive, has low frustration tolerance, is quick to anger, difficult to discipline unless you find the right approach, seems to have various sensory issues, is very bright, imaginative, sociable, affectionate, playful, funny and sensitive. He is clearly not autistic but other than that I cannot make a firm diagnosis of anything. Everything he is seems consistent with ADHD other than the fact that he concentrates well at school - he seems to push himself to do this, however, at some cost. I do not think it comes naturally. Without evaluations how on earth am I ever going to know? I agree with you, MWM, that the label is to help with accommodations and parenting/teaching approaches. Funnily enough, the doctor I saw today made the point you make, whatamess, that the teacher probably would not accept the label even if I had one! On the other hand, I KNOW it would change something in how he is perceived.
Funny how I've come right around from not wanting a label for J in the beginning to really seeing the value of that...

 

[InsaneCdn]

on the other hand... He's FIVE.
Lots of this stuff is hard to pin down until they are somewhere between 7 & 9... somethings, even later.
Even "over here" where it's supposedly easier to get dxes.

 

[Malika]

Yes, good point, IC! I wouldn't be in such a hurry except... that EVERYONE says the earlier one intervenes, the better the ultimate outcome.

 

[InsaneCdn]

YOU are already intervening. Quite well, too.
For Autism Spectrum Disorders (ASD) kids, they like to start major interventions before age 3... but that's for severe classical Autism Spectrum Disorders (ASD). Obviously, that is NOT your J.

One article I ran into once said that any "relatively functional" child (i.e. theoretically of the intellegence and make-up to graduate from HS) would ideally have their problems known and help in place, by sometime in the third grade.

I know that if my difficult child had received the dxes and help by sometime in third grade... I would not be HERE.

 

[keista]

Yes, that's right, I'm looking for a second opinion. J is indisputably physically hyperactive, impulsive, has low frustration tolerance, is quick to anger, difficult to discipline unless you find the right approach, seems to have various sensory issues, is very bright, imaginative, sociable, affectionate, playful, funny and sensitive.

You just described my son at that age. First initial and all. Eveyr time he came with me to the conveninece store, ppl would comment how if I could bottle his energy and sell it I'd be a gozillionaire!

He is clearly not autistic but other than that I cannot make a firm diagnosis of anything.

Ah, yeah. I said that too about my son. And daughter if you recall? But guess what? Both are diagnosed with Asperger's syndrome - a form of autism. Meeting either for the first time, you'd never know it.

Everything he is seems consistent with ADHD other than the fact that he concentrates well at school - he seems to push himself to do this, however, at some cost. I do not think it comes naturally.

What makes you think that? Because it doesn't fit the diagnosis you think should belong? What really struck me is what you had just posted about the teacher's report where J doesn't seem to respect the rules of life in a group. Sounds like a deficiency in social skills.

Funny how I've come right around from not wanting a label for J in the beginning to really seeing the value of that...

Life is funny that way, isn't it? It's all a journey and I guess we need to be flexible and open to different possibilities.

 

[Malika]

Keista, J doesn't have Asperger's. But we will get there with a diagnosis, whatever it is

 

[whatamess]

I think Malika is so knowledgable about who J is and what does and doesn't work for him, that any analysis and/or diagnosis will be superficial-based on the most obvious of symptomology. There are probably as many books that favor one behavioral approach equally as those that favor another. You could meet a dozen people who parent a child with adhd and each will have their unique approach toward their child. Unfortunately, at this point, blood cannot be taken-as in diabetes- and see what is in excess or missing and 'fix' it just so. Neurobehavioral issues are so complex. Malika you are doing a fine job with J! YOU are the most competent and knowledgable person about how to support J.

 

[Marguerite]

We're going through this all over again with difficult child 1 and easy child 2/difficult child 2, as adults.

difficult child 1 was assessed urgently at age 6 because he was so hyperactive plus inattentive. he was also obviously bright, and clearly trying to be cooperative, but unable to comply. Rather than get aggressive (back then) he would zone out in class. He was thoroughly assessed (psychiatrist, therapist, pediatrician) and ADHD was confirmed by all. He was started on medications which improved things a bit, but not enough. The label did help, but never explained everything.

The aggression started as he approached puberty. It was also greatly aggravated by caffeine.

We had some dud doctors over the years as well as dud assessments. Both boys had neuropsychologist assessments at the same highly reputable clinic. difficult child 3 was 4 at the time and their report on him was very pessimistic - "He will never attend a normal school. He is incapable of learning." They held back from actually saying "retarded" but they clearly implied it. They were dead wrong on that score.

difficult child 1 was 15 when assessed at this clinic and was actually at the upper limit of the testing parameters and the clinic's capability. They made a number of mistakes in testing which we realised afterwards. However, while they acknowledged the errors, they did not feel it necessary to amend their report.

Even detailed, careful testing is only as good as the tester. They need to have their brains engaged and not be merely testing on automatic pilot. The same thing applies to doctors, especially those who feel they are too intelligent to need to rely on forms and tests. These doctors have an approach to medical diagnosis and treatment similar to someone filling a car's petrol tank without using any form of gauge. Or perhaps like a doctor trying to assess a patient's blood sugar levels without using a blood test. Unless it's glaringly obvious, a cursory visual inspection will miss it.

Move on. Out of the country if necessary.

Marg

 

[InsaneCdn]

If Malika could even get as far as testing, it would be a big start!

But...

Even detailed, careful testing is only as good as the tester.

You got that right, Marg...
We actually had evaluator #3 pick apart evaluator #2 test results... couldn't re-test (less than 3 yrs apart) but put a whole new slant on things.

 

[Malika]

The key to it, really, seems to be the fact that at the moment - at the tender age of five - things are okay in school and no-one is clamouring for him to get help, as is often the case with ADHD kids here. I think you're right, Marguerite - this last doctor seemed to pride himself on his ability to sum up a situation in five minutes flat! He also said at one point that if J were truly ADHD he would have dismantled the office and would not have been interacting with me as he did at certain points. Is that true?? Seems like an awful caricature.
I've done all I can, I feel, in terms of getting evaluations. It's not going to happen here and not at the moment. I have another appointment with the original doctor in June and will have to discuss this with her - if she will let me get a word in edgeways. Part of problem is that these are public services, which are under pressure and with many children to see. I tried the private sector, however, and that is the doctor who thinks it is all because I am divorced. Sigh.