Neuro-psychologist's report

[DammitJanet]

You guys think it is hard in the last 5 to 10 years? Think about how difficult it was to have been one of us kids with mental illnesses in the 60s? I was told I was bad and incorrigible. There was no childrens mental health.

 

[InsaneCdn]

Janet - been there done that too. Same time frame.

It is amazing how far we have come in the last generation or so.
I'm hoping that we get that far again before any grandkids come along!

 

[BusynMember]

Same here, Janet, only I was called lazy and an underachiever (which wasn't true...I was doing as well as I could).

I do think in the US we seek help earlier and are less queasy about accepting that things are not right. However, it is still very hard to pinpoint much in younger kids. WE do what we can to fight for help for our kids and tend not to be as worried about a label. As I said in another post, a label is a big nothing. It changes, it can go away, it's hardly a lifetime sentence if it turns out not to be true or if the person doesn't want any help because of it. It is only there if the person wants help (or his family).

The Connors alone is not a good test for ADHD. My son scored off the charts on the Connors and his main problem is Autism Spectrum Disorders (ASD). Autism Spectrum Disorders (ASD) kids score just as high on it as ADHD kids do. Some kids with impulsivity and temper problems with rages also score way high on Connors (this is often called pediatric bipolar in the US). If that is all a tester goes by to make a diagnosis, I'd be very leery of the diagnosis. At least here, we also do the TOVA, although I'm not sure how accurate THAT is either. I think it's better than the Connors. I think you need more than one questionnaire to diagnose a child with anything...
JMO, as one who was misdiagnosed a lot with a son who was misdiagnosed a lot too.

 

[svengandhi]

I would suggest seeing a developmental optometrist or opthalmologist for the visual component. My youngest son saw an opthalmologist every six months and had glasses but it wasn't until we went to a developmental one that we learned that he actually needed bifocals. Also, have him tested again for color-blindness but not just a cursory exam. Two of my sons are color-blind, although the one who wears bifocals is not!

As for the behavioral components, is he only acting out at school or also at home?

My SD refused to believe that difficult child, Mr. Oppositional, was a total, cooperative doll at home for the most part, albeit a color-blind one.

 

[Malika]

Thanks svengandhi (I wonder what's behind your name, by the way). Someone commented that J gets red and green particularly mixed up... so I guess further testing might be useful. Sometimes I get a bit tired of going to all the doctors and testers - I'm sure people can empathise with that!
MWM. I'm with you on diagnosing by the Connors alone. It's not fantastic. I'll be honest with you - and everyone else I think J has ADHD when I read all the stuff about hyperactivity and impulsivity. When I read (less frequently) the stuff about how people with ADHD cannot focus properly on one thing because ALL sensory information is being received by them with equal importance (for example, as I write this, birds are chirruping outside the window but I have tuned that out because I am concentrating on writing this; it is said people with true ADHD cannot do that), I really don't recognise him with that. I also don't recognise him in Autism Spectrum Disorders (ASD), Fetal Alcohol Syndrome (FAS), in pediatric bipolar, anything like that. What I can say is this:
He moves around and is physically agitated far more than normal. He is impulsive, cannot handle frustration and has a tendency to argue and be rude when you are authoritarian with him. Thus far it all looks like ADHD/ODD. But there is still a nagging doubt... And I don't at the moment have access to a skilled and intuitive psychiatrist who is really try to look and see. I have a woman who very rapidly came to the conclusion it was ADHD and who doesn't listen to people when they speak, but interrupts and puts words into their mouths... So... I am a little leery about the diagnosis. But it seems the best fit at the moment and anyway it doesn't really matter since he is not on any medications. If things continued like this and he copes with school as he does now, I would not consider medications for him.
It is human nature to want to describe and understand... that is what a label is used for also.

 

[1 Day At a Time]

Malika,

I completely understand your frustration. We struggled for years trying to reach some understanding of our difficult child. Because he was our second child, we literally knew from the first week that something was very, very different about him. We had his lead blood levels tested at 18 months (interestingly he calmly watched the two burly guys who were sent to draw his blood and didn't make a peep- they said "what a strong fella"). We had his hearing tested at age 2. He had his first psychological "evaluation" at age 3 as we were attempting to get him into an early intervention program. He began to get into serious trouble in his pre-K program, and he threatened suicide when he was five.

We took him for several psychological evaluations and the psychologist said he was perfectly normal and should be promoted to the second grade from the first grade (the teacher thought he should be retained). We took him to see a therapist for an extended period of time, and the psychologist thought that husband and I needed counseling to "better understand him".

Things became more and more apparent when he went to middle school and it was all painfully obvious in high school. After years of searching and reaching out for assistance, we got a diagnosis of Autism Spectrum Disorders (ASD) when he was 16! His teachers and others who dealt with him on a daily basis all knew something was out of kilter. The medical professionals never got it. difficult child was in numerous accidents over his early years; he was incredibly gifted at finding trouble. We saw the inside of an emergency room repeatedly - once he had his stomach pumped because he got into my friends purse and took her cardiac pills within a three minute period. We barely got him to the hospital on time!

I'm listing this difficult history to let you know that , in my humble opinion, many medical professionals are very, very reluctant to diagnose young children. In our experience, they were actually more suspicious of husband and me. I hold some bitterness over this issue, because I believe we lost years of intervention time for difficult child. Trust yourself and your observations about your son. I agree that the label is not the most important thing. But, behaviors do need to be understood and children can receive interventions to help them in their present and future lives.

My thoughts are with you!

 

[TerryJ2]

Interesting and frustrating. I'm sending hugs.

 

[Malika]

Thanks!
Without wanting to sound arrogant (obviously not my intention - arrogance doesn't come into it), I now suspect I know more than the child psychiatrist about ADHD and conditions with similar symptoms. The last time I saw her, we again talked about the fact that ADHD may not be the right diagnosis. I asked her if there was anything else it could be. She talked about reactive attachment disorder. That was it. When in fact there are various other possibilities.
Pepperidge mentioned Fetal Alcohol Syndrome and at first I dismissed this. But then, reading more about it, I see that there is a "lesser" form of it, that doesn't involve facial deformity or mental retardation and... well, I don't want to start getting obsessive about labels again, but from what I have read, I feel it could explain J's symptoms better than ADHD, particularly as he does not have particular trouble focusing or sustaining focus.
But if I take this to the child psychiatric., I think she is going just to dismiss the idea! Will she even have heard of it? And how, in any case, does one ever distinguish between ADHD and damage caused by alchohol in utero? Is it important to have this difference understood.
I feel sad for J... if this is it. His whole life damaged because of his biological mother drinking - it's like a really powerful statement that you weren't loved or cared for, isn't it?

 

[InsaneCdn]

Malika -

We had to do that. We didn't get ANY diagnosis except we did the research first. NONE of them.

It takes... forever... to do the research. For 2 years I ran on 4 hours of sleep a night to get time to research. You can't do that. (husband could cover if I needed a half-hour nap). But... you CAN start with a similar process, plus bounce stuff off the rest of us here - and still come up with a range of possibilities.

The process is this...
Pick one of the suspicions at a time. Research it on the net - partly to get a feel if this "fits" at all, and partly to get all the "see also" links.
Then, follow up in every one of those links. And any other links from there.

We went from ADHD to Autism Spectrum Disorders (ASD) (25 stops along the way) before we finally ended up with Developmental Coordination Disorder (DCD) (in addition to ADHD). But its tricky - because Developmental Coordination Disorder (DCD) is essentially the motor skills challenges of Autism Spectrum Disorders (ASD) and Aspie kids... without being on the spectrum. And ADHD traits also show up in kids on the spectrum. SO... we had to follow every lead. Our search included various mental illnesses, but didn't go into Fetal Alcohol Effects (FAE) etc. because this is my child and we know there was no alcohol or drugs involved. It did include Reactive Attachment Disorder (RAD), even though that wasn't a possibility either - well adjusted kid until he hit school?? And yet - some stuff from there ended up being clues we needed for something else.

If I were in your shoes right now? I'd be taking Fetal Alcohol Effects (FAE) as my research point, and finding out what else can be in the "see also" category. Get as long a list as you can, of things that fit "somewhat". And then expand from there.

You will probably end up with 3-6 possible dxes that need to be investigated. You will have documented your reasons why. psychiatrist can take it from there.

You might be surprised at where the search and journey take you to... we sure were.

 

[keista]

Malika, this is WHY they don't diagnosis kids so young. There can be a lot of possibilities, and they all can look very similar. It is most certainly a good thing to start identifying and researching now, but keep in mind that NO ONE will be able to come up with a definitive diagnosis for a 4 y/o. Personally, I wouldn't want them to. Seeing how parenting strategies work/don't work, how the child grows and matures all will affect latter treatments regardless of the diagnosis.

 

[DammitJanet]

Since it appears that you wont get much in the way of psychiatric or therapeutic help right now, why dont you put your energies into working on parenting skills and behavior moderation that could help your son have an easier time in his life. Maybe find one method and try it for a few months. A week or two wont give you a long enough time to tell if it is helping.

 

[DDD]

You're reaching out for help, support and information. That's about all you can do right now. There were many times as my first difficult child (known here as GFGmom) was obviously not on target that I uncharacteristically cried in frustration. That was the beginning of my path to become a Warrior Mom. My Ex and I ended up divorced (the lst divorce in long generations of Irish Catholics) almost solely because his perception and my perception were vastly different. In those days there was no internet, of course. When I managed to get free hours I went to the library and read and read in hopes one book would magically explain what I needed to know. Just wamt you to know that many, many of us have been there done that. We're ready to be your support system. J is lucky to have a Mom who is attuned to his strengths and his weaknesses. DDD

 

[Ktllc]

Malika,
If you feel the psychiatist is not good enough, just forget about her. Seriously, don't waste your time convincing her of anything. That is not the way it is supposed to work. Doctors are not all created equal: there are good ones and there are bad ones. Some have philosophies that fit your life style, some not so much.
Try to look for a reputable one in Paris. Sorry to say that, but when you look for the best, whatever field it is, you need to go to Paris (that is if you live in France!lol).
If the waiting list is long, put J's name on it and don't get discouraged.
When we were talking to the psychologist who evaluated V the other day, I was asking why the initial devel. pediatrician. wanted to use medications when the diagnosis is so uncertain yet. Her answer was: he is a medical doctor, that's just the way he thinks. She even added, after a few hesitation, to not go back to him until we have the sensory issues clarified! It is simply not his field of expertise.
I guess not only do you need to find a good doctor but you also need the right doctor. Which of course can be tricky when you don't really know what you're looking for (so many possibilities and look alike symptoms).

In the mean time, find a good behavioral therapist. Just someone that cares and has experience with kids that are simply different. Our therapist admitted not being able to diagnosis properly, but she helps us SO MUCH! She helps us think, analyse and find ways to cope with everyday problems. She does not deny the need for a correct diagnosis, but she also reminded me that dealing with the problem is more important than finding a name for it. The name would make it easier of course, but the absence of "label" does not mean you can't find ways to cope.
I hope it makes sense to you.
Oh, and try to give yourself a break once in a while: a weekend with no reasearch on the subject for example. Try to shut it off for acouple days once in a while. And look at your son and all the good things he has going on for him. I know, I have to do that once in a while.

 

[svengandhi]

Malika -

When my oldest son was in HS, he inisted on being called "Sven," which is not his name but what he wanted to answer to. Given his coloring, he could be a Sven but he's not. It's also funny because I used to tell H that we should get a Swedish au pair called Sven.

About the same time, he developed a fascination with Gandhi. His favorite teacher called him Svengandhi and I just adopted the name for my tag because it was so different. So I guess if his teacher is reading here, my cover might be blown but otherwise, no clues I hope.

 

[Malika]

Thank you for all your comments. Klttc, Paris is 10 hours away! There's no way I can be going there regularly to see specialists. And, then, to be honest and thinking about it - what good would it do at this stage to have more professional input when no one actually knows or can tell very much more than we do already? I need to wait a bit, see what happens in school I think. It would be good to have a psychiatrist who is more insightful and wise than this one, that is true. But in any case, come what may I think we are going to be moving before autumn 2012. Many things to consider and weigh up in the balance, but either to near Bordeaux (where there are more sophisticated services than round here) or back to Morocco, probably Casablanca where there are beginning to be services in child psychiatry and where there are good schools. A lot of reflection because wherever we go next, this is it - no more moving. We settle there for the rest of J's childhood...
I think your suggestion is a sound one, Janet. A wise idea to strengthen parenting skills as a priority. Probably the best thing I can be doing, really.

 

[DammitJanet]

I really think that would be the best thing because no matter if he is diagnosed with Elmo syndrome or Big Bird or even Oscar The Grouch syndrome, you can learn to parent a child in a certain way. There a plenty of books out there or even websites. Love and Logic might be one to consider. I know 1,2,3 magic works wonders with my granddaughter. She takes time outs like a champ but rarely has to get to 3 because she knows I am consistent. I sure wish I had known this trick 20 years ago...lol. I can tell you I am a much better parent the second time around. There is also one called STEP. We did that at one of the places my son was in. Pretty good. I really dont know if the Explosive Child is what you need because I dont see J has really explosive. I see him as needing some routines and structure. He actually may be one of the kids that respond to behavior charts and pretty good praise and rewards.

Just my thoughts.

 

[BusynMember]

You guys think it is hard in the last 5 to 10 years? Think about how difficult it was to have been one of us kids with mental illnesses in the 60s? I was told I was bad and incorrigible. There was no childrens mental health.

I'm with you there, Janet. I got NO help. I was so scared of going crazy, because I knew that I was not "normal", that I used to read through the encyclopedias (remember them?) looking up diagnoses to see if I had them. I was convinced once that I had schizophrenia and once I was terrified that maybe I had multiple personality disorder. But mostly I thought I sounded like I had "Manic Depression."

Nobody understood. Nobody took depression seriously in a kid (and I was SO depressed that I couldn't hardly get out of bed. Heck, for my entire thirteenth year, I was too depressed to smile. I never smiled...at anyone. I had to finally decide to try to snap out of it by beginning to smile again). I'd have panic attacks in school and scream and run to the nurse's office, and the kids would tease me and call me crazy. That didn't help. The teachers were very hard toward my behavior.

If you went to a psychiatrist back then there was a stigma and for the most part they would tell you that your mother was no good. I knew, even back then, that the theory that depression (at least MY kind) was caused by poor parenting was bogus. I just didn't buy it...I knew I was born that way.

Those were lonely, lonely and scary times.

 

[susiestar]

I haven't read all responses, sorry if I miss something or repeat.

It may be that J has sensory integration disorder rather than adhd. LOTS of people thought thank you had adhd. But it didn't fit because when he was in a calm environment he wasn't hyper. He does hyperfocus on some things, but it just felt different than the adhd I saw in his brother and in many of the kids I was around. thank you could not sort out background noise, couldn't cope in loud places, handle certain textures, seams in some clothing, types of movement, tastes and he sought out others of those things. Treatment for sensory integration disorder got him from being able to cope at school 3-4 days a week to missing almost no school - it took four years but we got there!

The Out of Sync Child by Carol Stock Kranowitz explains the disorder very well and also ways to help it. She also wrote "The Out of Sync Child Has Fun" which is packed with activities to help with various types of sensory input. It is an interesting, and amazing disorder. Learning about it helped me realize that it is a major problem of mine and has helped me cope better also.

I do think the eye expert would be a great help, and dyslexia is very possible. From much of what you write about J, I have a feeling that the test scores, esp the IQ are pretty low for what he really has. Just a feeling.

 

[Malika]

Thanks, Susiestar. I don't know... J doesn't really have this level of sensitivity to clothes, etc - he has never complained about labels or seams (and, believe me, if he had any cause for complaint, he would!). Occasionally he has said a place was too loud, as though his ears were hurting, and when he was a baby I used to think that he became overstimulated by noise, colours, etc. In any case, no-one in my part of France seems to have heard of sensory integration disorder, so what good going down that road? I can't explore it any further in terms of analysis or treatment.
Thanks also, Janet. I think J is explosive, unfortunately... at the same time, he is much less explosive than he was so there's a moral in there somewhere. Main thing with him is really this physical hyperactivity - he doesn't ever, ever, walk slowly when we are outside. He runs, he races, he zooms... I've got used to it and it doesn't faze me any more. For me it is now "normal" - not so for others who do not know and accept him, of course. This morning there was a vide grenier in our village (= what I think you call yard sale?) and this rather catty old lady that I've never really warmed to saw J racing around saying "Attack! Attack!" (playing with a toy) and said to me as she has before, rather snidely "How does he get on in school, your little boy?" (translation: "Is he a horrific nuisance in school, your little boy?") In other words, physical hyperactivity = little hooligan... I can see the progress I've made, let alone him, by saying to her in a rather pointed tone, "Oh yes, fine - he's really no different from the other children!" I could see she was a bit put out...
All my life I've been so full of middle class shame, put there by my parents and particularly my father, so crippled and tortured by "what others think". The coming of J into my life is like some forced liberation from all this... I honestly don't really care much any more what others think... The good people understand and are compassionate, the less good ones never will but will criticise and blame. So let them!