[johnvb]

Well, after much heartache Paula and I have decided to give Ritalin a try for Elise. We were worried about side effects of the 2 types of drugs suggested for her ADHD - Strattera and Ritalin. We heard reports of Strattera causing anger and suicidal tendencies, and of Ritalin causing sudden death in a few patients! But after thinking about it we realised that the "side effects" of ADHD are also severe - she could run out in front of a car at any point and this sort of problem is probably far more likely than a major medical complication. Plus we heard today that she is being made a scapegoat by other children at school as she is an easy target - i.e. they blame her for most things even if she wasn't there! So it can't really be ignored and we felt that her life could be massively improved if it works.

Anyway, she's had her first dose this afternoon and it seemed to work in that she had a fairly calm evening by her standards. Only problem is she is still awake at quarter past nine (she was in bed by 7:45!) so it looks like the sleep problems sometimes associated with this drug are going to make their presence known!

John

[johnvb]

10pm - she has just gone to sleep!

[Speeds]

Hi John

Well done for taking the courageous step.

Firstly, experiment with timings and amounts but give each experiment time to work.  That is what my friend did and in the end she had it down to a fine art.

Secondly, try not to get stressed over changes that you see - good and bad ones.  I know, easier said than done but try not to think of them being due to the drug - think of them as just - this is what has happened today.

Lastly, I hope that it helps and remember, as I said on the "Confused" thread - all side effects have to be reported so you will find that although there is a risk, it is probably quite small that Elise will have the side effect.

In context, thre wre deaths in PWS children o Growth Hormone - Thomas has been on GH for 5 years now and while it was scary to know that at first (it happened when he was laready on it), careful reading in to it and finding out more made me realise that this side effect was highly unlikely to happen to Thomas.

Big hugs and well done.

[johnvb]

Thanks Speeds. Yes, it is a bit scary when you read press articles about people suddenly dying on Ritalin. The way I see it though is that although this possibly does occur in a minute number of cases, the number of cases of untreated children with ADHD either having a major accident due to lack of attention, or ending up having a thoroughly unpleasant life because of being misled by others, is probably much higher.

As to the side effects, difficulty in going to sleep is definitely one of them for Elise, though from what we have heard this generally reduces as time goes on. We have also had a day not eating at all, followed by throwing up everywhere, now she is eating everything in sight! Probably the result of a tummy bug rather than Ritalin though.

She's definitely a bit calmer though and less "in your face"!

Thanks

John

[Julie]

Hi John

I too would like to say well done to you and Paula for being brave.  I know how you feel, and it is a courageous step.  Jamie take medication for his anxiety which causes sleep problems and when its a school night you can feel the anxiety yourself - as they should be asleep and they're not!  Just wanted to let you and Paula know that if it does carry on and the sleep problems don't get better (as with Jamie's case) there is something you can get from the CDC which is marvelous.  Melatonin.  It helps Jamie to get to sleep, but doesn't keep him asleep during the night.  We've been told that it is a natural product.  The first time that Jamie took it, he didn't even make it upstairs before he was snoring on our sofa!  It was very disconcerting at the time, as we were not used to that!  The down side is that you can't get this from your GP, but the Child Development Centre will take your request for repeat prescriptions over the phone and you collect direct from the hospital - very efficient!

Best Wishes
Julie

[Speeds]

I hope all is going well and plateauing out (not sure that is right) but hope you get my drift that I am thinking of you and have my fingers crossed taht it is doingwhat it says ont he tin so to speak 

[johnvb]

Hi Speeds,

Thanks for thinking of us! Well, so far so good. She is now going to sleep only a little later than she used to and that seems to be the only side effect, though currently the dose is very low. As to the positive effects, well, I can only say that we went to a beach cafe on Saturday for a cup of hot chocolate, and left without having to reprimand either of the kids. If you knew us you'd realise that was a first! In fact, the effects are pretty subtle and she is still a sparky little thing, quite capable of creating a stir as before  . But it has reduced the frequency of little things that she does which gives us all enough of a break.

The dosage is supposed to be increased from Thursday so it will be interesting to see how it goes.

Cheers

John

[Speeds]

Fantastic news John and Paula.

What a wonderful thing to be able to do.

Does the dose have to be increased?  If she is doing this well ask the doctor if you can leave off increasing for a bit.  I am definitely NO EXPERT but it sounds like this is one massive step for all of you.

Thank you for posting - I am really so pleased for you all.

[Julie]

Hi Paula and John

That's great news.  I know where you are coming from - really I do.  Although Jamie has Aspergers he also has some ADHD and its very wearing!  Medication seems to get a bad press on the whole but to some of us it is a real lifeline and in particular to our children.  It does give them piece of mind, and they find that they are not being told off quite so much.  I am sure that you will find the right level of medication for Elise, so that her personality does not completely change.

Best Wishes
Julie

[johnvb]

Hi Julie and Speeds
Well, we are going to go up to the proper dose as recommended by the doctor, but only so we get the information about what effect it has. I spoke to the doctor yesterday and once that's been tested he is happy for us to decide the dose.

One thing people forget when they give Ritalin a bad press is how much worse the press is for people who need Ritalin but aren't given it! As the doctor pointed out - the chances of Elise becoming a drug addict if not given Ritalin are far higher than her becoming a Ritalin addict!

The main problem we have now is Michael isn't very happy that his sister is being so nice, so he's creating his own mayhem!

Thanks for your support,

John

[Speeds]

Thanks for the update.

I hope everything continues well and while I am sort of surprised that the dose is being put up I can understand why the doc is doing it.  At least you had a chance to talk to him about it though.

Poor Michael - a nice little sister - life can be cruel 

[Julie]

So glad things are going well.  Thanks for letting us know.   I expect you have started Elise on a small dose and just increasing it to find the right level.  We had to do that with Jamie's medication until we found that right amount.  Unfortunately (in one way but not in another) he is on quite a high dose of Fluoxetine (2 x 5ml a day) but I can honestly say it has made a massive difference to him as it helps him cope with the day ahead.  And that's the whole point isn't it?

[megamum]

hi there 

interesting debate on Ritalin  just thinking of giving a dose to our son soon who has just been diagnosed with Autism and ADHD  he is 7 years old and his concentration is not good  - he attends a special needs school which helps enormously  but not sure about this drug  - anyhow i suppose its worth a trial dose?

Keep me posted on this and i will too - lets hope we can all help each other with advice etc

regards

Lucy

[johnvb]

Hi Lucy

Well, the good thing with Ritalin is that it has an immediate effect, so you don't have to trial it for ages to decide whether it is worth using or not. But for us we figure that the tiny chance of a problem occurring with the Ritalin is outweighed by the improvements in her - she is just a little less "spontaneous" when on it and it makes all the difference. She is less wobbly as well so has less accidents. We still get the odd "moment" but as they happen only a few times a day, rather than a few times a minute (!) they are easier to take in your stride.

Good luck with whatever you do,

John