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Old 08-22-16, 06:14 PM
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New...starting assessment process

This will be long, so I apologise in advance.

My daughter is 11, turning 12 in November. I recently met with her music teacher to discuss her transition to grade 7 in February to a new high school and to get some input about her skill and knowledge gained to date (the new school was one she chose and it has a music focus). We chatted for almost an hour. The music teacher mentioned that my daughter had been showing pretty good promise until about a year ago, and since then she's just plateaued. During lessons, her attention wanders off, she doesn't hold eye contact for long. She gets bored, and resists learning the formal fundamentals. The teacher is experienced and has taught a wide range of students, and can accommodate a wide variety of learning styles, and she noticed my daughter is willing to experiment on her own and do her own thing, but not actually focus and learn on what is being taught.

Her regular class teacher and I have not discussed adhd to date, but at the last parent teacher conference, we had talked about my daughter being distracted and forgetting to finish assignments or turn them in. She got 5/10 on effort and organisation (ie. out of 10 weeks, she was fully prepared for half of them). She's quite sensitive in class (has always been an anxious, introverted kid and socially awkward) and it affects her ability to make and keep friends ("why does everyone else get invited to birthday parties except me?"), to take any kind of criticism in a learning setting (she'd often burst into tears last year). We constantly hear that she is able to do more, to achieve more, but doesn't work to her ability. She was an A student in grade 3, above average by grade 4, but then last year, the wheels seemed to come off with her grades and she went to just passing. Standardised country wide achievement testing that she used to do very well in, she failed last year. We had just done a cross country move by that time, so I put it down to the move. I brought my concerns to the teachers at the time and was told it was due to her settling in and the new school and not to worry about it.

What I thought were just her quirks and her personality traits seem to be getting more problematic now the past 18 months as well. She has always been stubborn, determined, creative. Her teachers joke that she is the spark, the personality that shines the brightest in class. She plays music by ear effortlessly. Her artwork is very good. She's apparently a year to 18 months ahead of her peers in tech skiils. She taught herself to read at age 3 by memorising the words. Her preschool teachers at the time had never seen anything like it. In grade one, she was reading at a grade 5-6 level just because of her memorisation and decoding skills, but it took until grade 3 for her comprehension to catch up.

But these days, the impulse stuff is driving us around the bend. She'll often want to start a detailed craft project right at bedtime and we'll argue about it. She is unrelenting with the nagging and demanding. Once she gets something fixed in her head, she just latches onto it and will keep pursuing the topic until it results in a fight and subsequent meltdown for her. One recent trip to the shops, she wanted a particular toy and although she had money in her savings for it, I told her that was savings money (she has trouble with the concept of saving), and it led to a full out meltdown in the shops, the kind you see from toddlers, not kids nearly 12. Afterwards, she was remorseful and I asked her (like all the previous times, before I started even thinking adhd), why oh why she couldn't see what was going on in the midst of it and change her behaviour and she said she just couldn't. She's always sorry and remorseful after the fact, but in the midst of these episodes, she struggles with control.

Her daily life in the past year is a trail of disorganisation...items dropped on the floor at home and never picked up, the school ipad she never remembers to charge it for the morning, forgotten lunch money, forgotten homework book. The impulse control stuff and outbursts are affecting our daily lives more. When she wants to do something, it's "now, now, now" and we struggle against this. The relationship with her younger brother has been affected and he is bearing the brunt of the bad days: outings cancelled etc. because of her behaviour. The amount of times he's tried to talk to her mid-meltdown ("just calm down," "listen to mom,") and he's 8 years old. His maturity is far above hers and he takes everything with a quiet stoicism.

I'll ask her to do something, follow directions, and it's like she only hears part of it. I often get back, "I didn't hear you." We'll tell her to go get something, do something, and she forgets part of it if it was a multistep process. We did hearing tests and vision tests and they were normal.

I talked to a couple of friends since the chat with the teacher. One has a daughter who had been diagnosed a few years ago, and with treatment, she's now in the gifted class at school. Another friend thinks my daughter is just a regular tween and that I'm overreacting and that adhd is a made up diagnosis to medicate kids. I guess I just wanted to share some of my reflections here to see if this is my imagination or worth getting checked out. I was going to call the doctor today and start the process for getting an assessment.

If anyone is in the Melbourne area and has any recommendations for a practitioner to see, please PM me. I'd also like to hear if our experiences sound like anyone else's daughter. I understand that adhd often presents differently in girls than in boys. I don't know yet if she has adhd or some other learning issue. I know though something is amiss and this can't be just ignored. Thanks for listening.
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Old 08-24-16, 02:08 AM
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Re: New...starting assessment process

I can identify with your daughter and I also have three kids- all adhd that this reminds me of. It reminds me most of my youngest daughter who can get fixated on things and used to have meltdowns very easily. She cant seem to tolerate stimulants and has depressions so we are using lexapro for the depression and therapy to address all the other stuff.
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Old 08-24-16, 10:59 PM
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Re: New...starting assessment process

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Originally Posted by sarahsweets View Post
I can identify with your daughter and I also have three kids- all adhd that this reminds me of. It reminds me most of my youngest daughter who can get fixated on things and used to have meltdowns very easily. She cant seem to tolerate stimulants and has depressions so we are using lexapro for the depression and therapy to address all the other stuff.
Thanks Sarah. I was pretty upset when I first realised last week this could be the issue (and we haven't even got the diagnosis yet), but now I'm just at the stage that I want the evaluations done, want to know what is going on, and how we can help and support her as she moves into high school and the demands on her will increase so much. If that means medication, then that is what it means, but first and foremost I just want to figure out what is going on and help her find her feet. I'm so nervous about the big changes to come next year for her.
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Old 09-20-16, 12:43 AM
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Re: New...starting assessment process

Update.

We managed to get her in to see a developmental paediatrician. One who actually had a cancellation and a spot available (otherwise, we would be waiting until March).

The paed is a specialist in developmental paediatrics and has worked in the Learning Disabilities Clinic, Behaviour Clinic, ADHD Clinic and the School Function Program clinic. So, it's fair to say that she knows her stuff, even if I don't find her manner particularly warm and fuzzy.

We talked for about an hour during the initial appointment. She questioned my daughter as well. Based on that first meeting, she said that her history, her symptoms, and our observations (parents and teachers) strongly suggest ADHD. She scored 8/9 on a scale for inattentiveness and 5/9 for the hyperactivity-impulsiveness. She did not mention any PDA or other co-morbidities although the anxiety seems to spin off from the ADHD.

Anyway, the next plan is to get more information from the teacher (more surveys and notes at the request of the paed), and another survey from us, and she would like to start a meds trial after my daughter comes home from the week long school camp in October. I almost feel like the meds trial thing is coming so fast and maybe being pushed, but since all of this is brand new, that's probably why it feels like this. The paed kept saying, "If this were my child, presenting as she is now, I would try medication."

In that time I've also talked to a friend whose daughter was diagnosed years ago and she swears by the medication. That it helped her to become stable and move into the gifted class at school.

I guess I'm still working through this all and I'm just worried about side effects. Thanks for listening.
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Old 08-24-16, 03:12 AM
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Re: New...starting assessment process

Has autistic spectrum disorder been suggested as a co morbid condition? If she has control issues and refuses simple commands she may have ASD subgroup of PDA (pathological demand avoidance). Many people with this condition are first diagnosed with ADHD. If you google PDA you will soon be able to work out if it's a possibility.
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Old 08-24-16, 10:53 PM
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Re: New...starting assessment process

Thanks so much for the replies.

I had never heard of PDA before. I just read some of the sites and while a couple of characteristics sound like her, to me anyway, looking at her history and my perspective of her, much of it does not...or maybe I should say, it could resemble it now, but definitely does not reflect her younger years (ie. she never melted down in preschool when asked to do something, didn't have the passive history, and she was a fluent and early speaker). I'm reading some of the blogs from parents who have had their children diagnosed with PDA and it doesn't ring true to what we experienced with our daughter, although the adhd material does.

I will bring it up to the psychologist anyway, but as it isn't a recognised condition here, I'm not sure what they will say.

I did speak with her regular teacher and she echoed some of my concerns. She reaffirmed that she is bright, "so, so creative," and the teacher is always laughing at some of the ideas she comes up with. That said, the issues are there with having to do things the prescribed way vs what my daughter wants to do, the attention span and distractability, and the emotional resilience. But then as the teacher said, this is Grade 6, the kids she's teaching are "hormone soup," and from one day to the next, the emotions of all the students are all over the map and change from minute to minute.

That said, I have booked in a cognitive and educational assessment with child psychologists and I've been assured that the possibility of adhd will be considered during the evaluation process. Anyway, it's the first step. As we're not sure yet if it is adhd, or some other learning issue, then I thought this would be a good first approach.
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Old 09-20-16, 02:09 AM
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Re: New...starting assessment process

Meds are first-line treatment for a reason.

I hope your daughter gets what she needs to have a better quality of life.

I was diagnosed at age 41. I only wish I could have been diagnosed as a child and then medicated. Who knows what could have been different. Who knows what I could have done in life.


Best Wishes,
Ian
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Old 09-20-16, 11:01 AM
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Re: New...starting assessment process

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Originally Posted by aeon View Post
Meds are first-line treatment for a reason.

I hope your daughter gets what she needs to have a better quality of life.

I was diagnosed at age 41. I only wish I could have been diagnosed as a child and then medicated. Who knows what could have been different. Who knows what I could have done in life.


Best Wishes,
Ian
Aw, thanks, Ian. That's what has struck me the past few weeks reading and researching...lost potential from the path not taken.

It was interesting thinking about the genetic component. At first I was like, "There's no one in our family with ADHD," but after careful consideration, I strongly suspect that it runs in my husband's family, but was never diagnosed. My mother-in-law (turning 80 this year!) fits the profile perfectly of an adult woman with ADHD and always has. It's just that no one thought it was that...it was just "how she is." There's also a list of learning issues and anxiety etc. that many of the extended family on my husband's side have dealt with over the years. I wonder how their lives would have been different if they'd received the support and treatment that might have helped them.
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Old 09-20-16, 04:05 AM
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Re: New...starting assessment process

If you are interested, there is a sticky in children's diagnosis which tells my story about my son. Meds saved his life and they have saved mine.
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Old 09-20-16, 10:54 AM
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Re: New...starting assessment process

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If you are interested, there is a sticky in children's diagnosis which tells my story about my son. Meds saved his life and they have saved mine.
Thanks, Sarah. I read it and then gave it to my husband to read. I wanted him to see what a difference it might make for her and how it can open up all these possibilities for her that she doesn't have right now. He's open to using this approach as well. I guess I'm just worried about the trial and error bit until we find what works and what dosage. Will life on the "wrong" medication be much worse than what we're dealing with unmedicated? FWIW, her behaviour is not the main issue, her inattention with learning is, but a bit of relief from the impulsiveness and outbursts/meltdowns wouldn't go amiss.
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Old 09-21-16, 03:20 AM
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Re: New...starting assessment process

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Thanks, Sarah. I read it and then gave it to my husband to read. I wanted him to see what a difference it might make for her and how it can open up all these possibilities for her that she doesn't have right now. He's open to using this approach as well. I guess I'm just worried about the trial and error bit until we find what works and what dosage. Will life on the "wrong" medication be much worse than what we're dealing with unmedicated? FWIW, her behaviour is not the main issue, her inattention with learning is, but a bit of relief from the impulsiveness and outbursts/meltdowns wouldn't go amiss.
I suppose its possible to have the wrong med make things more difficult but IME even the wrong dose still gave us hope because some of the issues were addressed-even if just a little. The trial and error thing is a PITA but its not a forever place to be.
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Old 10-05-16, 02:24 PM
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Re: New...starting assessment process

Update.

We saw the paed again. Returned the lengthy questionnaires done by us and the teacher. The answers were almost identical in most areas, so we know the behaviours were seeing (the impulsiveness, meltdowns and crying, non-stop talking, inability to finish tasks) is something we're both seeing, not just in one setting or the other.

The paed recommended Vyvanse, starting at 30mg dissolved in 30 ml water and a 15 ml dose once a day for 8 days to see how she goes, then if all is well, increasing to the full 30mg dose. We're waiting until the 15th to start as she's at school camp all week next week and the teachers shouldn't be doing a meds trial on the road.

If anyone has any positive stories of Vyvanse, I'd love to hear them. The Vyvanse forum on here seems to have mostly posts from people who had problems with it.
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Old 10-14-16, 09:28 PM
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Re: New...starting assessment process

First day on Vyvanse. She said she had a bit of a stomachache but it went away. Still super chatty and full of energy, but bit of reduced appetite. Happily crafting in clay and not wanting to be online as much.
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Old 11-25-16, 11:30 AM
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Re: New...starting assessment process

Your daughter sounds a lot like my son! ADHD-C but weighted more on the inattentive side.

He has been on Focalin, Adderall, and Vyvanse, and Vyvanse has worked best so far- he seems to have an easier time when it wears off (Focalin come-down made him super cranky!). Some kids have a rough come-down on Vyvanse, but my DS does fine.

Everyone is different though... I see it's been a little while since your last post... how has it been working for her?

Personally I think it's great that you are addressing this now before she starts HS. She should be stabilized and used to her meds by next school year- you are setting your girl up for success!
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Old 12-08-16, 04:15 AM
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Re: New...starting assessment process

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Your daughter sounds a lot like my son! ADHD-C but weighted more on the inattentive side.

He has been on Focalin, Adderall, and Vyvanse, and Vyvanse has worked best so far- he seems to have an easier time when it wears off (Focalin come-down made him super cranky!). Some kids have a rough come-down on Vyvanse, but my DS does fine.

Everyone is different though... I see it's been a little while since your last post... how has it been working for her?

Personally I think it's great that you are addressing this now before she starts HS. She should be stabilized and used to her meds by next school year- you are setting your girl up for success!
Hi Jenn,

Thanks for checking in. Thought I'd post an update.

She's been on Vyvanse for almost two months now. The first week gave her a stomachache about an hour in, but that went away. I had been holding my breath waiting for the side effects (crashes, mood swings etc.), but no really problematic ones showed up. She has had some issues with losing weight (down about 2.5kg since she started), but we've been gradually putting it back on, so that's promising. I was also worried because she has a bit of a mouth tic and you usually read so many negative things about tics and Vyvanse, but it seemed to reduce hers and you can see when the meds have worn off in part because the tic shows up more often in the evenings.

Her teachers and I all noticed a difference right away. Her baby sitter noticed as well. Even within that first week. The meltdowns reduced dramatically and you could actually see her pause before the explosion and take a breath and it was like a switch was flipped and she'd rein it back in. I'd never seen that before. The teachers noticed that she was doing better in school, more focused, finishing her work, and not so up and down emotionally. She was so happy about three weeks into the new regime, she bounced out of school saying that she undertood the maths lesson that day and was even able to explain it to a classmate. She was also invited to a birthday party: her first invitation for the whole school year (and school ends for us in December). She self reported to me that she wanted to stay on the Vyvanse. That she was able to concentrate and "felt better." I noticed she seemed less anxious as well, so that's another bonus.

She's still on the titrated dose as we noticed she was doing so well, with almost no side effects and we didn't see a need to put it up automatically. Her paediatrician said to keep her on the titrated dose over the summer and if she needs it increased to the full 30mg for high school in February, that can be an option then. We have had a few wobbly days when the meds seem to be less effective...she's overtired or hasn't eaten enough and so they can only work at their optimum when she's balanced in other areas too. I do worry about tolerance and have considered taking her off the medication for some periods during the summer holidays, but we tried one day a few weeks back and she was just so angry and irritable that I figured it was making her miserable (I sure know it wasn't a picnic for the rest of us). Her paediatrician saw no reason for discontinuing and thinks the tolerance issue is not a concern, so we're playing it by ear. One of my biggest fears though is that it'll lose effectiveness for her as it's been so helpful and brought a level of calm to our household that we hadn't seen in a while.

Anyway, that's the latest. Hope your son is still doing well too
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