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(35 Posts)
procrastimater Tue 17-Oct-17 09:48:30

I am a regular - have been on MN since 2005 but am using a different posting name for this thread.

I have an 11yo dd in 2015 she was given a diagnosis of Autistic Spectrum Disorder - High Functioning. She has follow up appointments with the paediatrician very infrequently. One this week, last one Dec 2015. So every appointment is precious time to get some guidance / input from the NHS minimal as it is.

Dd is a very well behaved child at school, she does not get into trouble and her school are helping by giving her life skills classes and there is a centre she can use for breaks and lunch time so she is not wandering aimlessly during unstructured time.

At home she is a bit insular and tends to spend all her free time on her special interests - at the moment Undertale and minecraft - so she plays these games, watches videos inspired by these games and draws pictures inspired by these games. She is a bit difficult to get motivated to do other things she will quickly lose interest and focus when doing homework, she will occasionally forget to go to the loo she will be asked to do something do half or less then wander off. She will lose things constantly and is incapable of getting ready in the morning if I don't line up her clothes and prompt her throughout. She can walk home from school alone but I need to talk to her on the phone all the way (this has been the arrangement since year 5) it is a ten minute walk.

We asked dd what she wanted to raise with the paediatrician and she spoke to them about her obsessions and how much time she spends on them. We raised the disorganised and forgetful, unfocused side of things as that is the main barrier to the smooth running of her life - as so much is incumbent on me being 'on' all the time to compensate.

The Paediatrician then raised some very specific questions and filled out a checklist - she suggested dd was exhibiting signs of ADD non hyperactive Attention Deficit disorder. This was a bit unexpected - then she ran through the drugs that would "help". Basically Ritalin and similar.

We were handed a couple of questionnaires - one for school and one for us, we are to get them back to the paediatrician for assessing and then if it seems she has enough indicators for ADD she will be given a prescription for a Ritalin type drug. We will get an appointment in 3 months to run through the drug affects/ side affects see if it is helping adjust the prescription if necessary...

Anyway I am trying to get my head around it all - we kind of nodded along and tied down a schedule yesterday - the appointment was quite fraught as dd was a bit upset, having all the focus on her 'problems' was stressful for her - she was lovely afterwards though and needs us to help her decide what is best. We are certainly only going to consider a drug treatment if it will help her and she wants to do it. But I am completely outside my comfort zone - I know a couple of parents with children with ADHD and they are very different - the children are hyper and need some help calming down and managing a school day. It is not like that with dd she is very quiet and well behaved at school, but she reports herself how difficult she finds it to settle and focus in lessons, other children are distracting, she is better in lessons she enjoys of course but there are not many of those aside from English at the moment. She will do homework and forget to hand it in, she will forget to do homework and she needs cheerleading to get through homework once she starts.

Anyone know / have experience of Attention deficit without the hyperactivity? Do the drugs help? I am scared to contemplate them but I don't want dd to be held back by my ignorance. AIBU to have an instinctive resistance to the idea?

ThePeanutGallery Tue 17-Oct-17 09:53:55

I was always a well behaved child in class, never hyper, I also did well in most of my classes (no clue how as I never paid a bit of attention and doodled my way through every class....maybe I learned from osmosis). I never did homework. I lost everything all the time. I was described as a daydreamer.

I'm not on Ritalin, but Concerta and I've found it's helped immensely.

blueberrypie0112 Tue 17-Oct-17 09:56:04

My husband took Ritalin for a long time as he also have ADD without the H. Since he was 8 years old or so. He stopped taking it since he was in his late 20’s he just didn’t feel like taking it anymore. His mom claimed it helps. She got worried when he stopped but he is fine now,

bigmouthstrikesagain Tue 17-Oct-17 10:03:23

That is interesting thank you.

PeanutGallery dd is most definitely a daydreamer. I am as well really, I never looked like I was paying attention in class and teacher's used to call me out for it then get fed up when I recited what they were talking about - I was a doodler and still am - but that helped me focus - I need to be doing two things at once. I am not sure how dd 'works' yet - she is not failing at school so I am wondering how the school will respond to the questionnaire.

magpiemischief Tue 17-Oct-17 10:03:39

I think the thing you need to balance taking this against is how bad is her concentration at the moment and does she feel like she could cope/ improve this without the help of the medication? Would she like to try more meditative techniques to improve concentration first? Are there specific contexts where she gets distracted and can she concentrate and shut out the background noise etc in certain contexts? Or does she need no distraction at all in order to concentrate? This would give you a sense of scale in terms of the severity of how her condition is affecting her and how realistic expectations of managing it without medication are.

procrastimater Tue 17-Oct-17 10:05:24

So much for name change! - dagnam it!

ThePeanutGallery Tue 17-Oct-17 10:08:02

need to be doing two things at once.

That's actually very common among girls with ADHD. I did fine in school, it was in the real world where I couldn't doodle in order to pay attention in a meeting, or when I had to actually pay attention to what was being said on the phone that I fell apart.

There's a lot of stereotypes about ADHD and not a lot of understanding about how it manifests in girls.

ThePeanutGallery Tue 17-Oct-17 10:09:28

she is not failing at school

She doesn't need to be. I graduated high school with honors and received honors and high honors in my Bachelors and Masters.

procrastimater Tue 17-Oct-17 10:13:54

Thank you Magpie - I am sure you are correct - it is hard to tell as dd is very different when it comes to her special interests she focuses for hours with headphones on and in her own world doing her drawings or playing games online. She is definitely on the under sensitive side of the sensory spectrum. She has a brother also with Autism who needs to waer headphones because he gets easily overloaded with sensory input, noise and touch bother him he is hyper aware of his surroundings. DD will seem unaffected and impassive or stressed and tearful but it is more difficult to discern the cause. The lack of focus seems inherent in any activity other than those she finds interesting/ enjoyable - she is very difficult to instruct but she clearly learns things - she clearly feels awkward and out of the place much of the time and adolescence is impacting her hard at the moment with the physical changes and self consciousness that it brings. sad

bigmouthstrikesagain Tue 17-Oct-17 10:18:04

Are there any useful resources for non hyper ADD as I have started looking but much of the stuff I have read online is more relevant to ADHD.

ThePeanutGallery Tue 17-Oct-17 10:19:40

I think there are a few forums. I used to be on one but can't recall. Yes, sadly, most information is geared towards the hyper side of the scale. sad

Catgotyourbrain Tue 17-Oct-17 10:20:58

Lots of girls go undiagnosed because they manifest adhd differently.

Ritalin is Methylphenidate - and usually a longer acting version is used (Concerta).

It’s a drug that’s been used for over forty years although it is a ‘controlled’ drug it doesn’t hang about the system for long , and a short trial will tell you whether or not it’s helpful.

DS has adhd and I can’t tell you how much it has helped him. He is in tear 7 now and started taking it 18 months ago. The first day he went to school on it his teacher came out in tears carrying a long essay he had written - it was like a different boy. He had effectively lost two years to schooling because he simply could not focus and keep on task at all, on meds he can concentrate on what he wants to. He says it makes him feel ‘cleverer’. It’s saved my life too because he had meltdowns nearly every night- and none now (he was mentally exhausted from keeping it together all day).

My only thought is that the process of finding the correct dose (called titration) need to happen won a lot more appointments than you describe - no psychiatrist should be sending you away with three months supply of methylphenidate initially - you usually start with 5mg and up it two weeks later, and maybe try a couple of long acting versions to see which suits best.

It’s worth a try and really no harm done if it doesn’t suit...

Catgotyourbrain Tue 17-Oct-17 10:26:27

Also OP you should post on the SEN boards here - lots and lots of wise women and some threads on girls with adhd (child and adult)

Allthewaves Tue 17-Oct-17 10:29:08

Add is more common in girls and is very underdiagnosed. They are the easy kids in school, the day dreamers etc.

Mine r classic adhd but friend dc is adhd without hyperactivity. Good news is that this particular dc needs a very low dose to help with focus compared to my hyperactive adhd. So I'd say def worth a try.

procrastimater Tue 17-Oct-17 10:36:42

We will not get a prescription for a couple of months - we need to do a telephone consultation initially then a follow up a month later to review.

procrastimater Tue 17-Oct-17 10:39:05

Thank you very much for your experiences - very helpful. I am just needing some starting point - the Dr is going to start low dose an adjust as necessary and I think that sound ok - but some of the side affects are troubling.

Catgotyourbrain Tue 17-Oct-17 11:47:27

Some people don’t get side effects - or not on the right dose. Good luck

Allthewaves Tue 17-Oct-17 12:07:46

Side effect are super scary at first but they wear off very quickly esp on low dose. Dc had headaches, stomach aches and no appetite when starting. The headaches and stomach aches quickly disappeared on the lower dose after a month - dc only takes it for school. Appetite suppression can be managed with higher calorie breakfast and dinner - don't expect much appetite during the day. But stimulants don't suit every child, so it's something you just have to try

parkermoppy Wed 18-Oct-17 12:31:33

I am on ritalin as an adult and I can absolutely confirm its been the best thing thats ever happened. I feel like I can channel my thoughts better and generally am more productive. Obviously its not the same for everyone, but a low dose is definitely not as scary as you'd think.

BertieBotts Wed 18-Oct-17 12:36:10

Give it a try and see how it goes. I'm another non hyperactive ADHD girl. I can't take medication because I'm TTC but if I could I would in a heartbeat.

All medicines have side effects and the serious ones are rare so it's worth seeing if the benefits outweigh anything that she gets from it. From anecdotal evidence, most people seem to get the appetite reduction and that's mostly it. Some people come off because of headaches.

DailyMailReadersAreThick Wed 18-Oct-17 12:39:41

I don't understand the reluctance to medicate. Would you feel the same if she had a bad infection and the doctor suggested antibiotics?

IfNot Wed 18-Oct-17 12:54:56

I don't know about Ritalin but when I read your description of your daughter she sounds just like my son: Super engaged in specific interests, very unfocused on tasks that have to be done, needs constant instruction or gets distracted (drives me mad!).
Isn't this just what a lot of kids are like?
As in, there seem to be 2 kinds of children when I look at my son's friends; the very mature organised ones, and the dazy, head in the clouds, obsessive- over- interests ones.
Obviously your daughter has a diagnosis, and I don't know her, but I wonder about medicating for something that (to me anyway) seem like quite common traits of an 11 year old? Is she very different from her friends?

HelpInheritanceDilemma Wed 18-Oct-17 21:36:15


Corcory Thu 19-Oct-17 00:51:12

We have 2 children both with ADHD. Our DS is definitely hyper and has difficulties at school and at home and our DD is not hyper and is also diagnosed with ASD. Girls do tend to present very differently to boys with ADHD. You could be describing our DD exactly when you talk about your DD. Our's is 13 and still plays Minecraft, watches you tube videos about Minecraft and doddles loads. She rarely wanted to go anywhere and preferred to do very insular things as well. She has been taking medication for the last 4 years and it has made loads of difference to her.

bigmouthstrikesagain Thu 19-Oct-17 20:21:33

Hello. Sorry I have been cogitating for a couple of days. Thanks again for all your thoughtful responses.

Dd is different from other NT children IfNot I don't think I will catalogue the ways as that isn't particularly relevant to this thread, you will just have to trust me on that.

Dd is inherently unfocused and detatched, she is not making a choice or being deliberately awkward that is the difference regarding focus. I know she gets upset when she feels stressed and lost trying to do homework etc.

We shall see What comes from the questionnaires, she might not get a prescription, though the Dr did seem pretty certain confused

I am not anti-drug treatments, I am not sure if other methods should be explored / exhausted first that's all.

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