melissa999
32 post s
7-Jul-2008
1:02 AM
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hi to all
could any one tell me about 3-4 dap my son is 19 months and starting this in a week or so i cant find any info on it ?
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Shaz123
14 post s
7-Jul-2008
2:33 AM
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Hi Melissa, The article below may be some assistance as there is information concerning 3,4 Dap and its usage in Children. http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1978489 Regards
Sharon
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Shannon26
39 post s
7-Jul-2008
8:53 PM
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Does your son have LEMS? I think that's the only thing 3.4 DAP is actually used for. I am a 33 year old woman and I have had LEMS for 2.5 years. I take 80mg of 3,4 DAP (Diaminopyridine) every day. It is a VERY POWERFUL drug and I am surprised it is even prescribed for children. The dosage must be very small. But I'm no nuerologist, so my opinion means nothing. If you have any questions, let me know. I have been using the drug for the last year and a half and I am pretty familiar with it's side effects, etc. I hope your son is okay!
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chairman
MGA Chairman
783 post s
7-Jul-2008
9:42 PM
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3-4 DAP is used to treat both LEMS and some types of Congenital Myasthenic Syndrome (CMS). It is still generally regarded as an experimental or 'orphan' drug. It is generally only prescribed by neurologists who specialize in LEMS or CMS. Pharmacists may have difficulty obtaining it in some countries. It is often, but not always, prescribed in conjunction with Mestinon. The doctor's instructions on dosage MUST be STRICTLY followed, because over-dosage can be dangerous.
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 Peter Finney
MGA Chairman
Last Edited on 7-Jul-2008 9:45 PM
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melissa999
33 post s
8-Jul-2008
1:09 AM
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hi my son has congenital myasthenia we have gave 4 other drugs a go but nuffin seems to work for him
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Hammie
122 post s
8-Jul-2008
5:47 AM
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Hi Melissa. As you know I too have CMS and have been using, quite happily, 3,4 DAP for a number of years now. When I was first given the drug by my neurologist I was given absolutely no information about it. I later obtain the required info from the pharmacy that dispensed my medication. If you find you a really struggling to get the info you need then maybe call the Pharmacy at the Radcliffe Hospital in Oxford. I have done so on many occassions and found them to be most helpful. Take Care
Adz ----------
(Adam The Congenic. Sussex. England)
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Mariah
4 post s
8-Jul-2008
6:43 AM
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Hello,I have lems and am on 40mg (DAPS) aday reduced from 100mg over a period of 18mths ,I think mainly due to going on thyroxine (25mg) every other day (under active thyroid),has anyone else been able to reduce their tablets over time ?Sometimes I do feel a bit yuk and very weak ,but after resting I seem to pick up again !I am all for helping myself as much as possible and thankfully Im not on steroids ,with DAPS as anybody actually got off them or is it lifelong?I didnt realise they are a dangerous drug ,no info was given with tablets ,my consultant said you have to be careful ,due to eperlepsy ,but nothing given about the heart ,I have palpertations on and off ,could this be DAPS side effect? Anyway I have just joined the Foram Board ,it is good to be able to discuss such topics and experiences etc. Thankyou ,until next time , Bye
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melissa999
35 post s
22-Jul-2008
10:17 AM
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hi all
well we started 3-4 dap yesterday toby is on 0.75mls twice a day and 1.25ml once a day still early days to tell if doing anything like all the drugs toby has been on it only last 2 hours grrrrr !!!!!!
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melissa999
36 post s
24-Jul-2008
12:23 AM
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hi all well what a waste off time 3-4 dap was we went to oxford yesterday and they told us to take toby off it as leicester has gave him the wrong does grrrrr can things get any worse its been 12 months now and nuffin has been sorted some times i dont think people no how hard it is to cope with we never seem to be goin forwards all ways back wards for us . we just not getting the help from leicester i would like
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chairman
MGA Chairman
798 post s
24-Jul-2008
4:40 AM
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The team at the John Radcliffe Hospital, Oxford are the world-leaders in diagnosing and treating CMS - you need to stick to them like glue!
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Peter Finney
MGA Chairman
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