DS's Psych and school want to trial medication for ADD. any advice

[mamazon]

Hi.
DS is 9 and started at a sN school in septemeber he has come on leaps and bounds since starting but still has his difficulties.

He is ASD and has just been confirmed as also having ADD.

The psychologist and teacher think it would be beneficial to his schooling if we were to try medication.

now he has given me a list of possible medicines to research and get back to hi on which i think would be better for him.
I will of course be doing this but i would like to hear from anyone that is already using them for their child. what are the real pro's and con's?

how do they make your child feel i know that some adult medications can make you feel fuzzy or lightheaded, even a little spaced out. i would be really interested to hear from anyone who could tell me what its actually like to be on these drugs.

I have always been resistant to using drugs on him but if it will help with his concentration and behaviour at school then i am willing to give it a go (providing the promise that the drugs leave his system every 24 hours and there are no lasting side effects are correct)

so the ones on the suggested list are

Ritalin (not on your nelly)
concerta xl
meditrinet
dexamphetamine sulphate
alomoxatine

and another beginning with E that i cannot read ( these may be spelt wrong as i simply cannot read his handwriting)

anyone with any advice?

(oh, and how do i get SN to come up on my home page? i am sure i was linked but for some reason i have to click via the link at the top of the page to see you all)

TIA

Hi, left a message on FB for you, but DD1 is on equasym, which seems to work for her. We tried the Equasym XL about a year ago but it completely spaced her out, so we went back on the normal tablets.

its the equasym Xl that the psych seem's to be recommending. (once i sw your message his handwriting made sense)

whats the difference between that and the normal tabs?

Sorry if i ask a million questions SGK its just i find that its easier to speak to people with real experience rather than wade through pages and pages of medical talk and sales pitches.

Starlight - School really are fantastic and have managed his behaviour and work load really well. they let him go off to a safe space when things get a bit too much but then make him sit down and get on with the work once away from the rest of the children so as to limit the distractions.

DD1 is on 15mgs a day, 10mgs in morning and 5mgs in afternoon.The XL are one tab in the morning but come in 10mgs and 20mgs, it was just too much for her. The school phoned and asked us to collect her as she was completely spaced out. We found it better for her to space out her meds, rather than all at once.

do you know the dosage the doctor is recommending? Because 20mgs is a lot to start with, we started with 10mgs a day, and worked upto 15mgs, the hospital have said she can have an extra tab after school if needed but we don't give her the extra one as 15mgs works ok

well he was saying 5mg but i have also read that they start at 10mg doses so not sure. mayeb the 5mg would have been a different drug.

I think he was hoping that the Xl would be easier as its just the one tablet but if the slow release doesn't work then i can see how that could be way too much of a hit all at once.

Im a bit worried about the possibility of decreased growth and weight gain. is that something you have noticed?

Well the normal tabs come in 5mgs, so DD1 has 2 in the morning and 1 at lunchtime. DD1 did have some weight problems to start with even though she eats like a horse. We reduced her meds till we saw the doctor and they said to make her eat first, and then tablets, it seems to have worked as she puts on weight ok now. She is taller than Ds1, who is 12 now, she is 9, so think her growth is ok now too

thats encouraging. Ds is a bit of a tank really so it wouldn't hurt for him to lose a bit of weight but if it iwas as a result of the tablets i would worry iyswim.

how long did it take for you/school to see a difference in her attention span?
do you give her the tabs every day or just school days? i would hope to only use them during school term time and not at weekends as we manage him at home reasonably well.
do you think that is a workable plan or do they need to have them every day?

i really am so gratefull for you taking the time to answer all of these. im so conflicted. You hear so many horror stories but at the same time i want him to get the most from school.

we noticed within a week, the school noticed quickly too. When we reduced the meds (due to the weight issues) the school noticed that she was more hyper and wasn't working as well.
we only give her the tabs on school days, not weekends, or school holidays, unless she is really hyper.

This is all really helpfull SGK, thank you.

Im off to do some more reading but i will probably be back in a while with some more questions.

I really do appreciate all yoru help.
thank you

Mamazon, Equasym is ritalin. It's the low-dose slow release version. Concerta is the higher dose slow release version. Medikinet is another. But all 3 contain the same chemical. They usually try you on one of these first as it has the best success rate.

Atomoxatine (brand name strattera) is the alternative. They try that second, if the first one doesn't work. It works for less people, but sometimes works where the first one doesn't.

I don't know anything about dexamphetamine sulphate.

Personally, I'm on Concerta. Most of the time I don't know I'm on it, really no side effects at all after the first 2 or 3 days. It's not working particularly well either so I've gone up to a higher dose and I'm getting some side effects now - loss of appetite and feeling a bit woozy at the end of the day - though that could be a cold. Ritalin might be better as I could just take 2 a day and go unmedicated in the evening when I don't need it - but there's no way on god's green I can remember to take 2 tabs a day.

I can't stack it with caffeine. Thank the lord for caffeine-free coke, one cup of tea is my daily limit atm or I get all jittery.

r3dh3d - thank you for that. its great to hear form someone who is actually taking the medication.

when you say you get no side effects after the first couple of days, what are those side effects

Are they the same with all the medications?

J started on Equasym (like Ritalin) which made him stop eating and lose weight dramatically. Then he went onto Straterra which takes a while to get into the system but is 24 hour coverage once it's kicked in, as opposed to ritalin/ equasym which work once taken but only for a few hours.

Apparently, straterra seems to have good effects with ASD/ADHD combinations...certainly true for us; J is a calmer, happier boy and much more able to settle and learn.

the Psych hasn't even mentioned straterra.

I think i would prefer that at least in the beginning, we stick to the ones that work instantly and only in the short term.

If once we have established that they will/won't make a significant difference to him i will be open to look at something that is more long term.

think your 'alomoxatine' is atomoxetine which is straterra!

The side effect I get for a few days is headaches. Mild ones, but a bit "odd" with it iyswim. But I think all the meds in the "neuro" space (by which I mean ADHD meds, anti-anxiety, anti-depressants, anti-epileptics) have a range of side-effects and different people get different ones though some are more common than others. Nausea, headaches, increased or suppressed appetite, mood swings - those seem the more usual ones. And as I say, not everyone gets them and generally they go away after a few days and you are OK. And if not, you try another med and strangely you may not get the side effects with this one even though it works in a similar way.

The eating thing is more or less of a problem depending on how your child is with eating. DD1 won't eat a thing if she's not hungry. So that would be a dreadful side-effect for her, she'd waste away. Whereas it's not such an issue for me because as long as you remember to eat once you start you're fine - it's not that I feel full, it's just that it doesn't occur to me that I'm hungry till it's in my mouth.

Should have said - one thing I have found hugely helpful with meds in general (DD1 has been through so many...) is BNF children. You have to register to use it, but there's no restrictions, anyone can register and once you do you have access to everything your gp can see in the book they haul down off the shelf when they prescribe. You have to learn to read between the lines; loads of things are not licenced for children but used on them routinely and it's ok if your doc knows his stuff. And loads of side-effects listed are v rare; they have to list the incredibly unlikely but dangerous ones as well as the ones you are likely to get. But if you read it with that in mind it's v helpful.

Hi Mamzon

It was a huge decision for us too, putting J on meds, took us two years to do it and he's now been on them for 3 years.

J started on Ritalin, though can't remember which form it was, he had one in the morning and one at lunch time, right faff with school due to it being a controlled drug and them administering it, but also J became very spacey and also very emotional, bursting into tears at the slightest little thing.
So we moved accross to Atomoxatine (Straterra), and we noticed a difference after about 3 weeks, it has been hugely beneficial to him and can focus at school properly now and is a lot easier to manage at home too, it does have to be given every day, but I think to be honest J wouldn't understand not taking it at weekends, it forms part of his routine now so would probably confuse him. Regards to growth, he is tall and skinny, but that is a family trait more than a result of the meds.

I understand you being hesitant, but all I would say is try it and see how you go, theres nothing to say he has to remain on it forever, you can always take him off it if your not happy with the results.
HTH

Sorry, should have said my DS is 10 yrs and has Frontal Lobe Syndrome and ADHD.

does anyone else have a huge faff getting the drugs from the chemist?? I have DD1's on repeat and Asda chemist pick up the scribe for me when I request it, but they won't make it up till I am there, so have to wait around for 20 minutes while they do that, then I have to show 2 forms of ID, then sign the back of the scribe twice, and they tell me everytime the tablets are a controlled drug etcetc.

Yes, it is a faff. It's effectively speed (if taken at v high doses) and has a street value - actually, as one of the most frequently prescribed controlled drugs it's apparently quite easy to sell on the black market. So there are legal controls that the pharmacist has to go through. There's a special locked cupboard and the id checks and sigs etc.

It doesn't have to take 20 minutes though. I find our 2 local pharmacies completely different - one takes 5 mins and one takes forever.

Oh, and I would like to add another side-effect. Insomnia. Haven't slept for 2 days. I've promised myself I'll go another week at this dose (because my experience of side-effects is 2 weeks is about the longest the "transient" ones last) but if it doesn't improve I'm going back down to the previous level and considering trying strattera.

My reasoning with taking the meds in the first place (as an adult - so the growth thing isn't an issue) was that all of the side-effects were things I could spot easily, and I could just stop taking it with no ill effects. Particularly the common ones, they are absolutely bleedin' obvious. I think the issue comes where for whatever reason your child isn't able to tell you they have headaches or whatever. I wouldn't give it to DD1 because she has no communication and it would take us a long time to work out what was wrong.

My Ds 6 is on equasym xl 30mg a day and the school have noticed a big difference. We used to give it only on schooldays but now he has it all the time. As am writing this he has been up since 5.30 woke his sisters up too, trashed his room and is now jumping from the windowsills to the settee which is a big gap. So he is now going to have his tabled today and hopefully i will be able to manage the shops with him.

He doesn't eat much when on the tablet, but once the effect the wears off he then eats loads as to make up for it. Has been on them since the summer and is really a godsend for us all.

He has ADHD, GDD, speech disorder and austism.

Anyway have to go now as now pulling the curtains down again.

the insomnia isn't great. he already has Melatonin to help him sleep and that isn't 100%

does that usually wear off after continued use though?

the 2 ID's bit will be a pain. I would use our local pharmacist though so hopefully as he knows me and DS he wont need to see that every time will he? can just imagine getting to the shops and having forgotten the id and having to go all the way back again.

You guys have all been really helpfull. my head has been spinning with medical jargon and reports and counter claims.
Im certainly glad im not in the states, read one report from a guy who claims 22% of ALL children should be on some form of ritalin.

I feel a lot more positive about it having heard how your children (and you r3d) have seen positive and marked improvements.

it's has been suggested we try a two week trial at first so at least it will give me a chance to see if there is any difference.

thanks

J's sleep got much better on the atomoxetine and the psych said a few of her ASD&ADHD combined patients had found that.