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SN children

Here are some suggested organisations that offer expert advice on special needs.

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Original poster

equasym xl

20 replies

louey76 · 24/10/2011 21:51

hi my son was diagnosed with a.d.h.d back last year he is now 7 years old ...today he had a follow up appointment with a pedeatric ,who has prescribed him equasym xl ....i have just sat down from work and read the leaflet and the side effects :/ now i really am shocked at them ,,,we are not one for taking tablets .....dont no wether to start him on them now or not :(

OP posts:

streakybacon · 25/10/2011 08:09

To put things into perspective, you could look at some potential side-effects of other commonly used medications. Almost all have them, but we balance them out with the benefits and decide whether the risks are worth taking.

A good example is anti-depressants. They are amazing when they work, life-changingly wonderful drugs. But if they don't work for you the side-effects are worse than the condition you started off with and they make you feel horrendous.

With methylphenidate you will know very quickly if the drug isn't effective for your child, and equally you will know if it is. Most psychiatrists will start off with a low dosage to test for adverse effects and increase gradually.

The usual comparison is to consider what you would do if your child had a heart condition, asthma or an infection. Would you treat with drugs in those circumstances? ADHD is a medical condition which can benefit from drugs, just like many others. You don't have to give it to your son but it may be exactly what he needs. IMO it's worth a try and if it doesn't work you don't have to continue. Talk to the paed again if you're not sure.

Original poster

louey76 · 25/10/2011 21:33

i did have a good chat with a consultant today and decided to try it have seen a good change in him today for about 7 hours ....the only trouble i have had is that he has only just gone to sleep where he is normally asleep by 7pm ,,his pupils were dilated and he said he couldnt sleep ...do you no if this lasts or does it normally last a few days ,,,oh and thank you for replying :)

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streakybacon · 26/10/2011 07:00

I think sometimes you do get minor side-effects as you're adjusting to it, same with most meds. Methylphenidate can delay sleep but it could be temporary - make a note of it and let the consultant know if it continues more than a few days.

There ARE pros and cons - you won't know what those are in your son's case until you try and then you need to decide whether the cons (usually delayed sleep and loss of appetite) are worth the pros (improved focus and concentration). Good luck.

Original poster

louey76 · 26/10/2011 12:42

ok so my son finally got to sleep at 12.00 am ! and woke at 5 ! he has point blank refused to take the tab today cos his words " mummy i really couldnt get to sleep i dont want them no more :( " so i am waiting on a call back from my consultant to see what he suggests .....he needs routine always has had it

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streakybacon · 26/10/2011 12:47

It's difficult, isn't it? My ds wasn't keen either to begin with so we had to juggle his routine around until we found something that fit, gave him the security of structure but allowed him to take the medication and get used to it. Sometimes you have to break eggs to make the omelette .

Hope your consultant can come up with something. Perhaps he's started off on too high a dose. 5mg was our starting point and we worked up from there once he'd got used to it.

Original poster

louey76 · 26/10/2011 12:54

i havent ever used any other meds ....he loves his sleep thats the one thing he does do when told is go to bed ! lol he is on the slow release ......do all the diff treatments have the same side effects ? i am new to all this sorry :/ x

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keepingupwiththejoneses · 26/10/2011 13:55

It sounds like your ds may be better on the instant release meds or as streaky said, a lower dose. They are all the same medication just different makes, so yes they can have the same side effects. Reading the leaflet can be scary, my ds has never had any side effects and has been on several different ones in the 5 years he has been on them, they needed changing as he has grown.

streakybacon · 26/10/2011 16:49

The instant and slow release aren't meant to be that much difference but my ds couldn't manage on he XL version. He started on instant release, tried the XL briefly but it sent him loopy, so we went back to instant and combined it with Strattera (atomoxetine) which suited him better. There are a lot of combinations to try and it can take several months to find one which suits the individual, but it's worth persevering if you can because the benefits are astonishing once it's balanced correctly.

Totally agree with keepingup about changing over the years. The effects change with hormones etc so you have to keep an eye on things and adjust accordingly.

Original poster

louey76 · 26/10/2011 20:28

i did manage to get in contact with a consultant secretary and am waiting on a call back tomorrow ,,i chose not to give it too him as he litterly has 3 hours sleep last night ! the secretary i spoke to ,spoke to the consultant breifly and told me to take him off them and i will get a call tomorrow ....i put james to bed at 6.50 pm he was asleep by 7pm love his heart x

OP posts:

streakybacon · 27/10/2011 07:08

I'm definitely no expert, but it sounds as though he's been started on too high a dose. Hope you get some answers from the consultant today.

Original poster

louey76 · 27/10/2011 14:40

just had a call and they want to see him at cahms at 4.30 :)

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streakybacon · 27/10/2011 15:53

That's good service . Good luck.

Original poster

louey76 · 27/10/2011 20:11

thank you streaky :) we was told today that the medication the put my son on was a too higher dosage ! and they have now given him methlphenidate 5mg ,so i am keeping my fingers crossed this will sort it out :) also been told that they have had a lot of feedback about the pediatrician and not good feedback :/ and have been advised to go see my gp and get referred to see a different one of which i am doing tomorrow :)

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streakybacon · 28/10/2011 06:44

Glad you've got sorted, but it's a shame it had to happen this way. A bad experience with meds could have put a lot of children off using them and that's why most doctors prescribe at a very low dose to begin with, to minimise any adverse effects. My ds still takes the immediate release 5mg form and increases when necessary - the XL was awful for him and I'm sure that if we'd started on that we'd have had a very different view of medication.

Hope this works out better for him and that you feel reassured. Better luck next time with the paediatrician!

Original poster

louey76 · 28/10/2011 08:27

im just hoping it doenst have the same affect with his sleep :/ ....i will let you no tomorrow :) the consultant and pead i see yesterday were fab and explained alot more to me and even gave me a book about adhd so i was impressed :)

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Original poster

louey76 · 28/10/2011 14:05

Ok so went and see my gp as told by the consultant to get my sons blood pressure checked as a guide line for him to say why are putting him through seeing all these diff people , and there us nothing wrong with my son :( and with regards to changing peadiatrion , don't take him back !!!! So I said but he needs to monitored and seen .. I have come home and cried my eyes out :(

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streakybacon · 28/10/2011 16:13

It sounds as though you've been given some bad advice from someone not experienced in working with methylphenidate. Measuring weight and blood pressure are routine when prescribing it and that should have been made clear to you. My ds has both checked at every appointment and I'm instructed to monitor his weight in between visits (I keep in touch with his consultant via email if needs be).

It shouldn't be your responsibility to act as intermediary between the consultant and your GP - you're not medically qualified for that. I'd suggest you ask your consultant to write or phone the GP and make arangements for him to undertake any routine tests rather than you having to ask yourself. The consultant can explain why they are necessary and reassure the GP that he considers your son to need a trial of medication. That's the consultant's call, not the GP's, and the GP should follow the consultant's recommendations. It's not for you to justify the consultant's treatment of your son's condition.

Sorry it's upset you so much. Try not to worry about it - get the consultant to sort out the fine points.

Original poster

louey76 · 28/10/2011 22:28

thank you for that streaky i will ring who i have been speaking to at camhs on monday even though they shouldnt be dealing with me as he is not registered there but they are so helpful :) well he had this new 5mg today didnt see much change to be honest ,,a little more focust though and he has gone to be on time and slept as normal so far :) :) :) but he did have a slight belly ache for 10 minutes so i will carry on with this for a week and see ...will do blood pressure my self and weight for now till he sees the adhd nurse in 4 weeks.

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Original poster

louey76 · 29/10/2011 14:07

yayyyyy he slept all night :) only side effect he has from this one is a slight belly pain for 10 mins about an hour after taking the tab x

OP posts:

streakybacon · 30/10/2011 07:28

Great news! Those effects are fairly common initially but should subside in a week or two. Keep at it and it's likely you will begin to see benefits soon. Very pleased for you and your son .

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