Medications 23rd June 2011

Since a bit of interest in this blog has been shown by other parents and families who have been in, or believe they are starting to experience a similar situation I think it would be good to touch on a question that has arisen from many parties.

Medications - What medication is Robbie on ?

• Sinemet (Co-Careldopa 12.5MG/50MG) –

 Robbie was given a drug trial with Sinemet about October 2010 (Just after his diagnosis) initially he was prescribed  one a day for the first week, this increased to two a day the second week, and after a couple of further weeks this increased to three a day (Morning, Lunchtime and Teatime) There was a slight improvement in Robbie’s mobility during this time, albeit he still struggled day to day. Robbie still takes three doses a day, not sure if this is something that will need to continue once his DBS is done (another question to be asked on our next visit to the Evelina team !)

• Trihexyphenydil – 2MG

Robbie was prescribed these a month or two after the Sinemet was originally prescribed, and the tablets were taken in conjunction with Sinemet. Again, initially he was prescribed one half a tablet twice daily, which increased to three quarters of a tablet twice a day (Breaking a tablet into quarters isn’t such an easy task by the way!) There was (In Robbie’s case anyway) again slight further improvement, and the dosage was increased to one tablet twice daily, this was further increased again to two tablets twice daily  however we did experience an issue a few weeks in where Robbie kept feeling like he needed to urinate, however when he tried he said (In his words – “It’s not coming”) we discussed this with his neurologist who advised this was a possible side effect of the medication and the dosage was reduced to one and a half a day, and this seemed to resolve this issue very quickly, over time we noticed Robbie kept rubbing his eyes and nose on a very regular basis, and he said his eyes were funny, again the neurologist was advised of this and again it turned out blurred vision was another side effect of this medication, and Robbie’s dosage was cut to one tablet twice daily.

Robbie is unbelievably good for a 6 yearold at taking his medication, and often reminds us it is time for his tablet...

So in summary Robbie is currently taking the following medication on a daily basis –

Sinemet (1 tablet x 3 times daily)

Trihexyphenydil (1.5 tablets x 2 times daily)

Ongoing side effects - One comment I would add is Robbie can become very moody and deep since the introduction of his medication, whereas he was always a very happy go lucky lad prior to taking his meds, there can now be occasions where he is his old self, but there are also other times when he becomes very easily upset, has dramatic tantrums and general mood swings, that said this could just be him becoming increasingly aware of things he cannot do as easily as other children his age, then again it could just be our little boy getting older and developing his own personality...

 Is the medication causing this ? Only time will tell...