would you give them to our child

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i am looking for advice from anyone who currently takes these tablets. I have just been given them to give to my 9 yr old daughter. she has been getting terrible delibitating headaches for 18 months and has just been prescribed them.

if you are already on them then you are the best peeps to ask as to how you would feel if you had to give them to your child. please help.

and thanks in advance.

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6 Replies

  • Posted

    Hi,

    My son is 8 and has been taking 0.5g Pizotifen since September 08.(8 months). He has cyclic vomiting syndrome.

    It took a while for his symptoms to stop - they went haywire for a few weeks at first and we increased his dose to 1mg a day fairly quickly - but his mood changed and he became very aggressive so we dropped back down to 0.5mg and touch wood, he has not had an episode since Christmas (after previously suffering every 3 weeks like clockwork)

    I think it seems to affect people in different ways. For us, this drug is working and the side effects are minimal. He has gained quite a lot of weight - which can be another side effect, but we can monitor this and consider it a small price to pay to be migraine free.

    All I would say is give it time. It seems to take a while to settle into the system but it has given my son his life back and he's started to do all the things normal 8 year olds do.

    I hope this helps you, best wishes.

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  • Posted

    Hello SLM - you are the first person that I have come across who has a child with CVS and given pizotifen. I keep seeing bad outcomes for people taking this but, from my son's experience, its been life changing (although not without side effects). My son's first CVS attack was at 7 - and I finally got some help for him at 9 (after lots of doctor visits). He has been taking pizotifen since age 13 (after puberty) and finally has a life! The major side effect is the tiredness which is very dibilitating now at 15 with exams (trying to stay awake) but he can finally do most things other boys can do like stay up after 9pm and stop the night at someone else's house, go on holiday without being ill, etc. Yes, it does have its down-sides for some people but not everyone.
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  • Posted

    Hello,

    My son-9 has just been prescribed this drug and I'm extremely concerned about giving it to him. He suffers bouts of migraine accompanied by violent vommiting. I read about the side effects of Pizotifen and am so concerned. He is already prone to temper tantrums and moodiness. I do NOT want these to increase. I also read about the drowsiness and nightmares it can cause. I think I'm going to request an alternative or try to change his diet and find some relaxation techniques/ stress busters for him. I just don't want to take the risk as he's not suffering on a constant basis. Am I mad or cruel?

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  • Posted

    Hi, I've just come back for a bit of an update,

    Marie-Claire, it's lovely to hear another positive experience. My son has still been episode free and the dose seems to suit him. The earlier drowsiness has gone and so have the mood swings. The only thing we are having to monitor is his weight, which at nearly 9, isn't too difficult to manage.

    Lisa, I can only speak for myself, I know that starting any drug has it's risks and worries, but for us, we had to give it a go as things were so bad. (Have a look on this forum for the 'Pizotifen & Cyclic vomiting' thread just a bit further down, I posted previously as Sarahlou). Yes, we had some problems initially and had to work on getting the dose right, but things are much much better now.

    My son has had CVS with regular 3 week cycles for 3 years now but only been prescribed Pizotifen since Sept because of his age. It's still early days compared to the length of time he's been ill, but as weeks turn into months without an episode, I feel more and more positive.

    Keep in touch.

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  • Posted

    I have been on Pizotifen for 25 years for the treatment of migraine. Now I know what I have been suffering from since the age of 4 is actually clinical vomiting syndrome. Pizotifen completely changed my life. The only downside is I am a stone heavier than I should be. The past year I have tried to cut down on them but the CVS is back.
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  • Posted

    Is anyone available to discuss this topic? My nearly 3 year old has been prescribed pizotifen for migraines. Previously tried propranolol but it wasn't working and also made him develop breathing problems. He has been on pizotifen for just over 2 weeks. No episodes yet but I am nervous. He has been having terrible tantrums since taking. Wondered if this side effect might go once in his system. How long do you think it takes to calm down if ever? I can put up with it if it stops migraines although it's not pleasant! Nice to read other people understand how bad it is having a child so poorly. Think the last year has been he'll to be honest.
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