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ADHD and Equasym XL medication? Any experiences please.

(36 Posts)
sumum Mon 10-May-10 16:33:20

My ds has now been dx with adhd with autistic triats. He is 6.

They have prescribed Equasym XL 10mg caps for him one a day in the morning.

Has anyone any experience of this?
How the meds work?
Or any advice really.
All comments gratefully recieved thanks.

sumum Mon 10-May-10 20:19:53

Anyone?

I have not started it yet, what shall I expect?

HelensMelons Mon 10-May-10 21:35:13

Hi Sumum

My DS2 (asd/adhd, 9) has been on equasym xl now for about 8 months. We have been prescribed it to help with his concentration and focus in school, to slow him down enough to listen to instructions and make social interaction easier - to remember social cues.

Initially I was very nervous but he takes his tablets with a petit filous and has no problem. If he has been off them for a while (ie school holiday) he can be a bit out of sorts for the first couple of days - grumpy and/or teary but this settles down - you might find this when you start your ds off on them. He also has little appetite when the meds are working so lunch would be very small and by about 4.00pm when the equasym has worn off he is a completely starving and grazes the rest of the day/night.

He can concentrate better in school and it makes a difference, if he is medicated at the weekend it can help relationships with his siblings, etc- things are less fraught.

He is quieter and that can take a bit of getting used to - I am used to a lot of bouncing around but the paed always says " is he quieter than the quietest boy in the class?" well, he isn't so we know that he isn't over-medicated which is reassuring.

I hope that has helped a bit and hope that reassures you!x

sumum Mon 10-May-10 21:51:43

Thanks Helen that is reassuring.

We are having a hard time at the moment with very aggressive outburts and lots of lashing out at sibs.

Will defo try the petit filous as I was wondering how to get him to take it.

I think I will try and give it just before school so it has kicked in by end of registration and hopefully it will last till after I have done homework/reading, does this sound about right?

I have been really concerned about his concentration in school and he is behind in all areas so anything that helps him settle down and learn would be good.

Today in the peads office he was jumping around and behaving like the worst behaved child in the world, not listening and lashing out - he would have made a good 'before' advert for supernanny, It was totally draining.

streakybacon Tue 11-May-10 07:11:53

DS (11, AS with ADHD presentation) started on regular Equasym 5mg last September and the positive effects were very obvious from the outset. He was calmer, more focused, got through work more easily and was generally happier (he's HE so school not an issue).

His consultant changed his meds to Equasym XL from January and it didn't suit him - he became more agitated, less settled and his concentration was poorer. More angry at times too. To eliminate any other possible reasons we reverted back to the Equasym 5mg regime and he settled down again. He now takes 2 x 5mg morning and lunch time and a furthe 5mg around tea time (25mg total) and that suits him well.

It's worth keeping a daily record of symptoms while you're in this trial period and note any activities/events that might affect him because it's not always the meds that cause problems. You need to look at it from several angles to be sure. DS is 11 so we weren't sure how much of his behaviour was meds and how much was hormones, but by careful monitoring we've worked out what's what and are treating him accordingly.

sumum Tue 11-May-10 08:16:23

Thanks streaky

Yes will keep diary of behavoiur that is excellent idea.
Also have decided to wait and start at the weekend when he is not at school so I can monitor any side effects and be there myself.

Have been awake most of the night with all this running through my mind.I was thinking about HE if things didn't improve at school as we do lots of educational stuff at home anyway to help keep him on track, if I didn't do so much he would be even further behind.

I will post how it goes.
Thanks.

buttons99 Tue 11-May-10 09:28:07

Hello sumum. My DSD (lives with me) takes Equasym XL too. She has ADHD and mild ASD. She is 11 and has been on medication since she was 5. Firstly equasym (1 with breakfast and 1 at lunchtime) and then changed to XL aged 8. 1 per day.

We find it really helps her with concentration at school and calms down her outbursts in general. She is a child who always has to have strict boundaries and even on the medication we still often have to keep a lid on her, but often when she has stayed at her Mums and not been given the medication we can see a vast difference for the first day or so we have her back.

Appetite problems are def our biggest issue so I would watch for that. She often has no appetitie and we have to force her to sit at the table until she has finished her meal and as she isn't hungry its a slow process. But that is def outweighed by the positives on her behaviour and concentration.

Your description of the Hos visit made me smile. I am always fascinated that the child we have managed to get to be so much more sensible changes into a text book ADHD/ASD child when in a doctors surgery or Hosp. She seems to "act the part" beautifully with the interuptions, random outburts, wriggling, dropping about 5 years in behaviour, squeaks, daft faces and general "uniqueness". Then we walk outside and hey presto back to normal. Strange!!!

Just keep a note I agree and give it time. Good luck.

sumum Tue 11-May-10 21:01:48

Thanks for that buttons.

I usually have the complete opposite at the docs where ds behaves like an angel and then when we leave can't hold it together anymore and is a screaming mess, so it was probably good he showed full range yesterday!

Love your name - one of ds phobias is buttons, he can't bear them even on other people especially if they are (gasp) open!!!Apparently they are evil???

And thanks for the good luck. I am feeling bit less shell shocked today and a bit more positive.

Will start the meds on saturday and see if we have a peaceful weekend.

mumwhereareyou Wed 12-May-10 20:52:16

Hi my DS is 6 diagnosed with ADHD and autistic triats as well. He was started on Equasym XL 10mg a day last August and there was no differnce at all,he is now on 30mg a day and it has made a big difference to his life and ours as a family.

This time last year he couldn't even read now he is on level 4, he is writing and adding up as well. This is a child that last year couldn't do more than 15 mins in a classroom at a time.Now he is in the class for the best part of the day.

He is still loud,but much more managable so the school says.

he has his tablet at 7.45 and that lasts till he comes out of school.If he is going somewhere in the evening like a party he has a another sometimes.

Have to agree re appetite,he eats nothing allday at school.But as soon as he comes home eats all night long. but his weight is stable so not too bothered about that at the moment.

It was the best decision we ever made as a family.

sumum Thu 13-May-10 09:54:26

Thanks mumwhereareyou.
Does your ds have another long lasting tablet in eve or a short lasting one?
and does the dose go on the child's weight or does that make no difference?

What I am a bit worried about is that we have the tablets but are not due to see peadiatrition again for 4 months so what do I do if they don't suit him or we have worst problems in the eve when they wear off.

We haven't started them yet so am probably just worrying for nothing and will just have to wait and see and give it a try.

mumwhereareyou Thu 13-May-10 15:13:38

Hi Sumum

No he has a short release one for evening and we only use it if we are going out ie party,dinner or pictures.

No don't think it does go weight as far as i know. Our paed told us to ring her after 3 days on 10mg and she would up as required. Although she always knew 10mg wouldn't be enough for him.

Hope this helps

We don't have that many problems in the evening really,

streakybacon Fri 14-May-10 07:58:43

The dose doesn't go on the child's weight but it will be monitored at each review because methylphenidate can suppress appetite and the doctor will need to make sure the child is maintaining healthy weight.

r3dh3d Fri 14-May-10 08:40:29

Hi su.

Your GP should have basic competence in measuring dosage and checking for side-effects, this is a fairly common med for kids. The paed should have written a letter to the GP about this new med.

The way I did it (I'm recently on Concerta XL but same med, different packet) is the shrink wrote the GP a letter saying "increase to x amount". I discussed with GP. We agreed that as it usually works within a week, 2 weeks at each dosage was a good trial. I started on the lowest possible dose (turns out that people respond at very different doses for each person so these days you start as low as poss, not a dose for your weight) and went up every 2 weeks. Improvement was OK but not radical. Eventually I found I was getting side-effects (and the good news is they are usually very obvious; generally appetite and sleep problems) and I went down to the previous dose which is where I stayed.

I started 5 months ago and it hasn't worn off yet so seeing the paed again in 4 months should be fine.

I think seeing the GP is important because they can monitor blood pressure; I'm not sure if you need to do that in kids as well as adults, but it was definitely something the shrink specifically insisted on for me.

sumum Sat 15-May-10 08:55:24

Hi all and thanks for all the replies.

Well I have just given him the first dose so we will see how today goes.

I am much more reassured by all your responses and have started a diary.
We have at least one major outburst a day with many smaller ones and yesterday he suppassed himself and made himself ill with shouting and screaming.

We are off out for a picnic today so will post how he gets on later.

Thanks again for all your support.x

r3dh3d Sat 15-May-10 09:12:54

Oh, btw - just read your orig post about full diagnosis of ADHD with ASD traits. I know a friend with a child with the inverse diagnosis (ASD with poss ADHD traits) had some problems with this med with sleep disturbance and had to discontinue. All the studies say there is absolutely NO problem giving this to kids with both ADHD and ASD - in fact the kids with ASD may be less likely to develop some side effects - but in practice because children with ASD are prone to disturbed sleep anyway, you really have to monitor that. So keep a sleep diary as well as a behaviour one. Noting where the dose changes of course!

sumum Sat 15-May-10 09:25:58

Thanks for that r3, he does already have sleep difficulties and is on melotonim 4-5mls each evening for it so will keep an eye on it.

sumum Sun 16-May-10 14:48:39

Well to update you.

He had quite a good day yesterday, much less conflict with sibs and more open to discussion so I think it has had a small effect. I have not had to make him do anything he doesn't want to yet so will have to assess how that goes in that respect.

But he had a really disturbed nights sleep, worst ever. He didn't fall asleep till 2am and had to have two doses of melatonin.And wrecked his bedroom in the process.

He has been bit grumpy today but with so little sleep it is expected. Hopefully tonight will be better.

He is just engrossed in wtching the borrowers at the moment so is giving me a bit of peace. Thank goodness for family films.

I am writing everything down in a diary.

Fingers crossed for improvements.

PinkyBoo64 Tue 25-May-10 18:48:40

My DS (will be 11 in July) has been on equasym 10mg twice a day since he was 7 when he was diag with ADHD. He is not generally aggressive but extremely inattentive and restless and it had got to the point where he was becoming unpopular at school cos he was disrupting other children and struggling to keep up with work (despite being bright) and so losing self-esteem. He did go onto the slow-release once a day med but school said it didn't work. Since then I read that people with digestive problems can't always absorb it properly. DS seems a slow digestion - doesn't poo for a couple of a days then huge, so slightly constipated I guess.

My DH is not at all keen on the medication. I have an ambivalent view, but it definitely helps at school. We tend not to use at weekends or on holidays unless he is going out with other friends or needs to concentrate (church service or something similar). School always wants a supply when he stays away but the cubs do not medicate him when on camp altho we give them a supply if they wish.

DS has no appetite when on medication but makes up for it in the evening so his weight remains normal for his age.

He is sleepless but this comes in phases so not sure there is a link. I was worried about the side-effects of Melantonin - does anyone know anything about this?

We are also worried about sporting events. He is a good swimmer and takes part in comps but methylphenidate is on the banned list for ASA - does anyone have any advice or experience of this?

Does anyone have a child who's been on this med for longer than a few years?

sumum Wed 02-Jun-10 22:34:28

thank pinky.

We have had no noticable side effects from the melatonin and it does help with sleep but he is needing much more since taking the equasym.

I also don't know about the sports thing.

DS is much better at school on the meds, the teacher says he is much more focused. it wears off by the time he gets home though so evenings still tough. And as I said his sleeping has gone to pot somewhat. His appitite seems the same, he has always been picky and not eaten much anyway.

Generally I think it is helping but I still feel very sad we are medicating our child, I think its taking some getting use to. One minute I am really positive and another really down. He takes a lot of my energy and endless patience which is wearing. I feel a bit worn out today, but generally it has been a good day.
Sorry for rambling.

mewmewpower Tue 18-Sep-12 08:18:31

Hi all - my DS is aged 7 and has been changed from 27mg XL of Concerta to Equasym 30mg XL. Has anyone noticed a difference between the Concerta and Equasym? Even though the Equasym is a higher dose, I am not seeing the same positive effects than when he was on Concerta, slightly lower dose. Do you know whether it takes a while for the new drugs to kick in? Or what I am seeing is what I am going to get? Wilst on Concerta, he has good mornings at school but the afternoons are a little more difficult in that he fidgets more and doesn't hold his concentration for long. I am beginning to think, I don't know what's for the best confused

Charlea81 Sun 02-Mar-14 23:30:12

Hi hun. Im in the same boat as you. My son has been diagnosed with adhd with autistic traits and he had his first dose of equasym xl 10mg on saturday morning but to be honest hun it hasnt seemed to make any difference except he keeps complaining of tummy ache. I dont know what to think or what to do for the best.

Any advice anyone pls?

Sund0g Mon 17-Mar-14 12:19:53

Please try VegEPA before considering medication. It is all natural, based on EPA from fish oil and omega 6 from virgin evening Primrose oil, and it really really works. See my thread from this morning in special-needs for more info. Good luck x

ouryve Mon 17-Mar-14 12:24:39

Cannabis is all natural, too hmm

Sund0g Mon 17-Mar-14 12:46:07

Hmmm... The difference (one of many) is that this replaces the first in the chain of fatty acids that ADHD children are unable to produce due to them lacking a key enzyme, and hence enables them to continue to produce all the other fatty acids that we all need for normal brain function. There is no down side to this at all. In fact it explains precisely why they have what we know as ADHD traits in the first place.

We have had life changing results and I am spreading the word in the hope that many more children can benefit in the same way.

X

ouryve Mon 17-Mar-14 12:51:54

Interesting. Do you have any links to research on this topic?

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