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...
I am in contact with quite a few parents who have a child with Dystonia, and most have reported mood swings, tantrums and 'angry' behaviour. All including myself wondered if it was a side effect of the drugs, and indeed I found out that trihexyphenidyl has been reported to cause behaviour changes in the elderly such as paranoia and mood swings, both of which Chloe suffered from. However, over time, I discovered that most of the children I knew had behaviour changes, but all seemed to be on different medications as different neurologists favoured different drugs. This led me to think that maybe it was the uncomfortable symptoms and loss of control which made the children so cross and moody and not the drugs. I heard somebody say that when the muscle spasms are bad, it is like having snakes inside of you moving about. I would think, coupled with the exhaustion, that this would be enough to make anybody moody!!
ReplyDeleteSince DBS and the symptoms being much more controlled, Chloe has been back to her old happy self and is a delight again, but if we have a blip and her symptoms creep back, then so do the moods leading me once again to conclude that it is the symptoms and not the drugs which cause the problems. I would be interested to hear other peoples experience of this.
Great post thanks Dougie .
ReplyDeleteLily was trailed on Sinemet to rule out the dopa responsive form . Unfortunately it exacerbated her spasms both in frequency and severity.
Lily too has always had a very sunny , easy ,wanting to please personality very happy and secure . I totally agree , with the symptoms causing moods. Not long ago Lily went through and a very closed off , angry stage whereby if we tried to talk to her about her 'wobblies' ( she calls them that ) she would get very upset. It turned out ,after us backing off for a while , she was worried we would be cross with her ! She thought it was her fault. I can promise you we have never shown anger towards her attacks but I believe she has witnessed upset in us about her condition which she translated as us being mad at her . The one medication my husband and I do know for a fact altered her mood ( we've tried a lot ) were the anti epileptics. We tried so called better/gentler ones , even on a small dose they made Lily super tired and grumpy. It was like someone had turned off the lights behind her eyes almost. I was relieved that the day care she attended also felt she just wasn't herself in mood but falling asleep at the drop of a hat. I say relieved because I'm always checking myself , thinking is it just me seeing this or that.
Good luck with the meds . At the moment were having a break , only using a slight sedative to help her get off to sleep as her spasms were giving her a lot of trouble at that time. Botox in her calves and afos . Lilys spasms are daily at the moment and can go on for a long time , her stamina seems low again for physical activity so I think we may need to review again soon . Bye for now , take care ?Marsela