Are doctors more informed about ADHD now?

[Anonymous]

My sister was diagnosed with ADHD a few years ago. Ironically, she was always more organized than me. After reading about it, I knew that it was something that I had struggled with. As a young child I remember my grade one teacher yelling at me (constantly it seemed) when I didn’t know what I was supposed to be doing. At one point I hid in the bathroom from her. She told my mother she thought I had a hearing problem and that I could read way to well to be stupid. I tried to pursue a diagnosis a couple of years ago, but finding a doctor who believed in adult ADHD let alone giving medication for it seemed like an uphill battle. With two young children, I felt defeated when doctors were skeptical that it was a real disorder and even if it was, I heard from two doctors that they didn’t treat adults. Also, I have a degree, a gift with language, so they didn’t really believe I could have it. They thought I was too functional. Academically, I was successful, but it took a whole lot of effort and I feel I am often underfunctioning, especially with daily and repetitive tasks. To get to the point I was too worn out to pursue it, to fight about it. I didn’t want to seem like a desperate mother seeking stimulant medication to function through the endless and overwhelming household duties that seemed, and still feel like, a prison sentence.

Now that one of my children is in school and is showing signs of having difficulty focusing, being quiet, not interrupting, playing games, etc, I know that I must face the medical system so that my daughter is understood, not abused, treated fairly, and given breaks to run around if need be, etc. I am planning to bring her report card to my appointment. What other things should I say? Should I expect a referral to a psychiatrist? What if the doctor is dismissive of the problems she (and I) have?

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[Patte Rosebank]

If the doctor dismisses your problems, then find another doctor who specializes in ADHD. This can be more difficult in the USA, where you have to get permission from your HMO to see a particular doctor or go to a particular hospital. In Canada, you can go to any doctor or hospital you like, provided they’re accepting new patients, or, for a specialist, you have a referral from your GP.

Lots of us have had to educate our doctors about ADHD. You should be prepared to do the same, or at least to have done enough research through legitimate medical sources (not just the hysteria of the internet), that you can discuss this rationally, with proofs to back you up. In fact, this is how you should prepare to discuss ANY health concerns with ANY medical professional.

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[Anonymous]

Thank you for letting me know about bringing materials in. I will find some to bring to my next visit. I do live in Canada so I guess I can just keep trying to find a doctor that is open and interested in working with me about it.

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[Anonymous]

lulledwinds, bringing the report card(s) is a good idea, as it (they) usually have comments from teachers; it can be helpful to see if the comments are consistent from year to year (i.e. with different teachers). You may be able to get an evaluation done through your school, but in our experience, you are likely to get a more complete picture from a doctor specializing in ADHD. Usually, the evaluation includes input from parents as well as teachers, so you may be given forms to be filled out and returned. It can also be useful to make a few notes about your own observations over time and bring these with you. (Luckily, we found a terrific doctor in the GTA; if you are nearby, I would be happy to recommend him to you.)

Once you have found a doctor to be part of your “team” and have the evaluation in hand, be prepared to advocate for your daughter with the school system at almost every turn. If an IEP (individual education plan) is recommended, you are permitted to have input as to what it should include. We found it odd that the teachers and other staff were thanking us for attending various meetings, but it seems that very few parents actually involve themselves at this point. (And some parents never share the evaluations with school staff, either … how unfortunate would that be?)

No doubt that it can seem overwhelming at times; we often said to each other that no one should have to advocate this hard for their child, but the bottom line is that if we didn’t, then who would? Happy to report that we are seeing the rewards; the boost in confidence and self-esteem alone in the past several months has been nothing short of amazing! And in advocating for one, we are learning more about ourselves at the same time, so this may be an opportunity for you and your daughter to share experiences.

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[Anonymous]

Thank you for your post. It sounds like you have been through quite the journey. Kudos for you for being so involved in your child’s education. I think having such aware and caring parents is half the battle for ADHD children. It probably makes a huge difference too when teachers know you and know your child better.

I want to do everything I can for my daughter, and it is so helpful to hear from people who have already been through it all. Good to know about the IEP -maybe I can include my daughter’s interests more than with the regular curriculum. I will take your advice and have her assessed through the medical system if I can at her age. I figure the younger she is when she is understood, the better.

I am assuming when you say GTA you are meaning Greater Toronto Area? I am not in the area, actually way out west in BC. I think there are doctors out here for children, and I hope so much that they are reasonable. If not I may have to travel East and I will be asking who your doctor is! In my experience and from what I have heard it is easier to have children assessed than adults b/c there is a shortage of doctors who treat adult ADHD. I am not sure why this is the case, but maybe it is because ADHD is so misunderstood and widely unkown to many. I myself can go through many days feeling fine, but then sometimes I just get so tired of all of the things I have to do and then I get behind and overwhelmed, and at those times I wish I had an option of medication.

I think you are correct that this process will make my daughter and I closer; I have been trying to give her high doses of positive behaviour management after reading/watching Dr. Jain talk about how great it is for ADHD children and I love to see her so happy and pleased with herself. She told me she knew I was proud of her, and that it made her happy, and I almost cried with relief. I just hope I can keep up with her and keep remembering the positive management. I was already doing rewards with her: her dentist may hate me: fruit snacks for getting out the door and staying with me in parking lots, t-shirts and or other small toys for not hitting her younger sister, etc. I am looking for some good sugar-free treats-they get us through getting out the door, putting snowsuits on, getting in and out of the car, things that can sometimes be struggles. Thanks again for the advice, I will take this information with me on my journey.

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[Ivriniel]

In regards to talking to your Doctor, talk to your child’s teacher first. See if you can get her/him to write a letter that you can show to the Doctor, describing what not only the classroom teacher sees in your child, but also any other teachers who have regular contact with her, gym teacher/music teacher/special ed/ reading recovery, etc.

Schools are sometimes hesitant to write this type of letter, because of fears that they might be left on the hook to pay for any treatment. If your teacher or their principal is concerned about this, get them to write the letter addressed to you. That way you have something else to show the Doctor.

Here’s a letter of this type that I wrote a number of years back for a parent, just to give you an idea:

Dear Mr. and Mrs. X,

As you requested at our meeting on (date), here is a summary of the behaviours that have been observed in your son, ***.

*** is a friendly, happy boy who is constantly in motion. In the classroom I find he frequently has difficulty remembering to raise his hand before speaking and will often blurt things out in class. During seat work, *** often has difficulty remaining focused, and is frequently out of his chair. He has been observed on many occasions chewing on things such as pencils and his clothing. On the playground, *** has difficulty controlling his impulses and frequently has difficulties with the other children as a result.

Mrs. AAA , ***’s Reading Recovery Teacher reports that during their daily one on one reading lessons *** has difficulty sitting still. He has trouble focussing on the book being read, and is often looking around the room. *** regularly loses his place in the middle of sentence. When *** does writing with Mrs. Reynolds he will frequently forget what he was going to write even after he has rehearsed it several times orally.

Miss BBB, ***’s Physical Education Teacher indicates that *** struggles to listen and follow instructions during class. She finds that he makes impulsive choices that put his own safety or the safety of others at risk.

In a variety of settings throughout the day, *** exhibits impulsivity, difficulty concentrating and poor attention span. These behaviours are having a negative impact on *** in academic and social settings. I hope that together we can find solutions to help *** have a happy and successful school career.

Sincerely,

Me

In regards to what sort of referral you want, I’ve been told to recommend to parents that they ask to see a Developmental Pediatrician.

In my experience a lot of GP’s don’t see enough of kids to really know when a kid’s behaviour or development is not quite where it should be for their age.

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[Anonymous]

lulledwinds:

I really like your thoughts on positive reinforcement and rewarding for good behaviour! We have worked with kids for 20-something years in a variety of settings, and I never get tired of seeing the expression on their faces when they’re told how well they’ve done! One tangible (and non-edible) method may be to set short-term (daily) goals, then make up a longer-term (weekly) goal using a chart: each day that you get out the door and in the car without incident, a star goes up, then, when there are several stars (you can negotiate on 3-4 days, or a full week – whatever seems appropriate), a bigger treat is in store – maybe a movie night? And don’t forget to reward yourself, too; every few days, take some time and do something that YOU will enjoy – a good book or new CD, a mini-spa treatment (like a manicure or a facial), a 30-minute massage – whatever works. Some days will be tougher than others, so these little rewards can really help smooth out the rough edges. You’ve earned it!

Ivriniel:

What a godsend you must have been for those parents! This is exactly the type of feedback that is required (and is asked for on the questionnaires), and it is especially helpful to include observations from several different teachers. The formal evaluation often compares teachers’ observations with those of the parents, and in older youth, the children themselves, as it helps to see the big picture (ie does the child behave the same way at home and at school). By including the academic performance as well as the social interaction, you have touched on many different aspects that would allow a competent psychologist to prepare a more complete evaluation, and therefore, a more accurate diagnosis.

I would like to point out that the observations you have described are very typical of a child with ADD (hyperactive); in our case, while J. showed difficulty in focus and concentration, he was never disruptive, stayed seated, etc., and did not display behaviour issues. Because of this, he flew low on the radar and was in danger of slipping through the cracks; ultimately, his diagnosis was ADD inattentive subtype, which is often overlooked and while it presents much differently than the stereotypical “hyperactive” child, it is no less a challenge.

We have been lucky in that any time we wanted to discuss J. with our GP and/or our paediatrician, they have been supportive and resourceful and have no qualms about referring us to specialists if/when deemed necessary. They are as much a part of J.’s team as we are, an outlook that helps us put a positive spin on the situation.

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[purlgurl]

Hi Ivriniel – I wish there was an email-a-member function! I wanted to let you know that you seem to have left one instance of the child’s name in the letter above.

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[Anonymous]

Thank you to Lisa SB and Irviniel for your posts. I have seen the doctor who had no qualms about referring my daughter to a specialist. She has many hyperactive symptoms. I think it would be a good idea to have the teacher’s input also, b/c kids can hyperfocus during interesting time and seem different for a short appointment.

I agree that the primarily innatentive subtype is more difficult to spot. I believe I have this subtype and am still searching for someone who will entertain the thought that I have this. Most professionals seem skeptical when I tell them I think I have it, so I hope to find someone who can give me an honest assessment. Fingers crossed about the next psychiatrist.

I hope I can keep up with the rewards. Everything seems overwhelming right now but I hope I can get it into our routine.

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[Rick Green – Founder of TotallyADD]

If someone is looking for an expert, Dr. J suggests you start looking in June and July. That’s when new doctor’s graduate and that’s when they are looking for patients and taking new patients.

We’re also going to be talking about finding a doctor and the diagnostic process Wednesday evening at our life workshop in Toronto. Three hours with Dr. J and I. Very informal. Just dealing with people’s concerns and questions and issues.

It’s on our events page. There are still spaces open, but seating is very limited.

http://www.totallyadd.com/totallyadd-events/

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[Ivriniel]

Thanks PurlGirl. It’s actually a teacher’s name, and I can’t edit the post anymore. Oh well.

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