When your child was first diagnosed, what was your doctor's initial advice?

Today's question is about the first conversation with your doctor after your child's diagnosis.

When your child was first diagnosed, what was your doctor's initial advice? Treatments, behavioral, referral.

What were the good things you learned at diagnosis? What worried you most at diagnosis?

Share your experiences and interact with other members in the comments below! :)

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17 Replies

  • There wasn't a real conversation as such she initially wrote it in a letter copied to the school, my reaction was to request a meeting but that took months. She did say that there are medications but at this time we assessments can be made seeing how he copes without it. Then we got the sleep meds.

    I was initially concerned how this was going to label him, i worked in the same school and knew how they spoke and felt about certain children, they had issue with children that did fit "their" ideal. He's moved on and deals with each day as it comes.

  • Thank you for sharing! Has your son's school been supportive of his learning and progress? How have they helped since his diagnosis?

  • Our doctor went like this he does have adhd do you want medication for him . That was it. I didn't want to medicate not without knowing the full facts, seen many stories about how they make kids like zombies . So didn't want that I also didn't want to take the risk of later on down the road to find the meds you give our kids could cause cancer or anything else . For me I didn't want that in my conscious so decided to just parent him like our other kids but we needed to know why he was like he was to make sure he knows the risks of acting out and for everyone around us to know he.s not a naughty child he can't always help is impulses.

  • Thank you for sharing! How is your son doing now?

  • He is doing well he gets is moments everyone around here knows him and what he has so all look out for him. He.s recently taken up football. We been congratulated on how we parent him cause how well he's come on instead of getting worse. We take one day at a time and by allowing him to go out and play and work all the energy off he's not getting into trouble at home. We lucky we live in a safe area .

  • He wasn't living with me at the time but his Mum and my Mum (Nan) were dealing with CAHMS who were a great help to start with but then his behaviour started to get worse and more difficult for his Mum to deal with,he started getting violent towards his Mum and his Sister who doesn't have ADHD,i then had to step in and he has been living with me for the last five and a half years,his behaviour for me is ok but his Education is a weekly battle of disruptive behaviour and endless problems with following instruction,he has been in five different schools and still hasn't settled in a mainstream environment and will probably be starting in his 6th school after the holidays.

    He's on 45mg concerta daily and we're also awaiting an ASD assessment.

    It's a daily struggle,some days are manageable but school days are difficult.

  • We didn't have much of a conversation at diagnosis. We did discuss medication and agreed to try methylphenidate. This had a clear benefit as soon as he started taking it - only later did the side effects get bad. Mostly we went away and did our own research on ADHD and what it is about. I don't remember being at all worried. It was more, OK, he's got ADHD, that's fine, he can take a pill for that and learn to manage it. My wife and I both worked with an adult with ADHD, diagnosed late, and he took some medication and as long as he managed his blood sugar ok - kept it up - he did absolutely fine. So we had few worries about ADHD.

  • Not really much of a conversation, probably as hubby and I are both GPs so knew a fair bit about it anyway, by the time of diagnosis A had been under the care of community paeds for several years prior to diagnosis

    Dietary modification was never really an option for us as the co-existent Aspergers meant A ( son) was incredibly restricted diet wise with only a very limited range of 'acceptable' foodstuffs.

    Opted for medication with behavioural input from the outset. Has worked well for us -A now a typical 21 year old who has a job, goes drinking/to footie with his mates and a bedroom that is a complete tip!

  • Had two diagnoses. First from a colleague of my husband ( he's a child psychiatrist) who is a friend so very informal and lots of doctor speak between him and husband. We all agreed to try methylphenidate, had difficulty with the dosage but doc worked at it.

    Had a lot of difficulty with GP who was a pain about prescribing as child psychiatrist was out of area and son was not under local Camhs at that point. ( Husbands insistence, not my wish).

    Later, Camhs re did the diagnosis and confirmed. They were more comprehensive and as he was older then he was able to make decisions about meds etc.

    Now settled down at 17 with right dose of Ritalin and he is doing really well.

  • I myself am diagnosed with ADD. I was diagnosed in 2004. The test actually came back inconclusive because I couldn't concentrate long enough to finish any tests. I was immediately prescribed with concerta with a supplement of Ritalin in the afternoon.

    I was only in kindergarten when diagnosed but my mom says that it changed my life. The first time taking the medication, my said that I asked her if the clouds had always been there. I'd never slowed down enough to realize that there are clouds..

    I now take Daytrana and it has vastly improved my concentration throughout the day.

  • School began the referral which led to actual diagnosis but I tried to seek diagnosis in parallel via the GP. The GP was friendly and respectful but pushed back a little to discourage us. I mentioned my husband could have it as it is strongly genetic (he was diagnosed later), he shrugged off my husband's traits as 'just being a man'. I refused to back down. Although the referral was knocked back as she was under six years - her birthday was three weeks later. When my husband sought a referral he was fobbed off so I went with him the second time and refused to leave without the referral. The attitude toward medication was so bad for him that we are looking at private prescriptions, initially at least. I got the impression some GPs don't believe in ADHD nor medicating for it.

  • To be honest if I didn't know anything about adhd I'd have been completely screwed. The consultant gave us the diagnosis and then just had a quick chat about making the choice weather to put her on medication or not. After that she handed me two leaflets about adhd just the basics really and the different types of medication she could have. She spoke more to my eldest son who was asking questions about why they give dopamine as it's a stimulant. So she explained to him tat adhd kids don't produce it and this is what causes the symptoms.( he was about 12 at the time). Al in all the service is rubbish and they just want to get yea out the door asap. Was not impressed at all.

  • I had many conversations with doctors about my sons condition but got very little help.He was passed from pillar to post and like I said before he was thirty years old before he was diagnosed with ADHD and Aspergers.

  • It was a couple of years ago, and it's hard to remember. She gave us a lot of information about coping with ADHD, but I don't remember much advice, except to make sure that his school knew.

  • At diagnosis I was referred to a child psychiatrist at the local hospital I didn't get much advice or info from my gp I was just glad to get the diagnosis and realise that he had a problem and wasn't just a naughty child I was warned the waiting list at the hospital was 18 months to two years which worried me

  • She was 14 and diagnosed with ADHD and hypothyroidism. She agreed to take medication for her thyroid but was scared of ADHD medication changing who she was. We focused on dealing with her thyroid and left it at that.

  • CAMHS made the first diagnosis and took some time to draft a report, treatments were not offered to start with and they were very apprehensive to do anything with this specific label but were more open to working with the other diagnosis given of aspergers.

    Explanation for behavior was the main thing was helpful and it helped to convey why he induced himself in certain ways and methods. There were no worries as it is something we had read a lot into.

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