Chase’s Cerebral Palsy dystonia drug trial

Chase’s Cerebral Palsy dystonia drug trial

How a bit of drool might be the key to unlocking Chase’s full potential

I’m nervous, excited and apprehensive all at the same time about writing this blog post. Earlier this week after well over a year of attempting to sort out a solution for Chase’s over saliva production he might just have hit a jackpot solution.

Chase’s Cerebral Palsy

Chase has a fairly severe form of Cerebral Palsy. His formal diagnosis depends on which bit of paper you read from which medical professional, but the most common one seen these days is Cerebral Palsy with Dystonia. This means that Chase has two types of Cerebral Palsy, he has some spasticity (tight muscles) but he also has dystonic Cerebral Palsy too. Dystonic Cerebral Palsy is characterised by involuntary muscle spasms and unwanted movement.  Fortunately for Chase we very rarely get involuntary muscle spasms but we do have lots of problem with unwanted movement. Movements can be fast, slow or jerky or sometimes all three.   In some people like Chase the muscles in the face are also affected.  This causes issues with speech, eating, facial expressions and drooling.  Chase has all of these problems!  All these unwanted movements get worse when Chase is excited or under stress, but almost like magic they disappear the minute he falls asleep.

Drooling in Cerebral Palsy

So as stated above Chase has issues with drooling.  This is down to a combination of unwanted or uncontrolled facial movements as well as hypersalivation (an increase in the amount of saliva).  Chase has worked incredibly hard over the past few years to improve his swallow and self-awareness of keeping his mouth closed. This has meant when at rest drooling has been reduced.  If he’s tired though the drooling starts to return, and if Chase even tries to do any single activity that requires concentration (for him that’s basically ANY type of movement) then saliva production goes into overdrive and he’s got no chance of swallowing it.  Drooling also isn’t a symptom that disappears when Chase goes to sleep.

The solution

A little over a year ago I was recommend by Chase’s dietician to see my GP and ask to try scopolamine patches.  These are little clear plasters that you stick to your skin behind your ear. They are commonly prescribed for travel sickness, but a side effect is a dry mouth.  These worked great initially but the patches gave him rashes and also started causing a lot of nose bleeds.  After a while they seemed to stop working so we discontinued them.  I then started having a little research into what our other options might be.

Those of you who follow my Facebook group here might have noticed an article I shared a little while back about a girl with Cerebral Palsy.  She had seen remarkable improvements in her function and had even started to talk. Reading through the article shed had lots of different treatments. The article seemed to attribute most of her improvement down to the success of a new form of stem cell treatment.  But reading between the lines ( it was a Daily Fail article) further down it seemed that they couldn’t actually identify what had made the improvement as she had started a lot of treatments together. If you want to read the original article you can do so here.  Something on the list of treatments she had piqued my interest – an anti Parkinson drug that she had been prescribed to help with drooling.

Anti Parkinson’s drugs for drooling

I’d actually seen on my numerous web searches for new developments in treatments for Cerebral Palsy an article talking about a drug called Sinemet. This is an anti Parkinson’s drug that seemed to also have a success in treating children who have Cerebral Palsy with dystonia. I decided I wanted to see if I could get Chase on a trial of one of these types of medicines.  After much faffing about my GP who didn’t have a clue what I was talking about, Chase’s school were able to add him to their visiting Peaditricians caseload. The appointment ended up being cancelled and then rearranged due to unforeseen circumstances.  Earlier this week we finally had our appointment!

The appointment with the specialist

We lucked out with the Peaditrician. Not only was he the head of children’s Nuerosciences at the Evelina but he’s also one of the UKs top specialists in drooling.  Here I was thinking I was going to have to push to get the medication I wanted for Chase but it turns out it was the first thing he suggested.  I didn’t even get round to talking about his dystonia. After I mentioned the drooling he quickly noticed Chase has dystonic movement and said let’s kill two birds with one stone.  I left the appointment feeling super positive

Next steps

I’ve got to wait for Chase’s letter to be sent through to his GP until we get his prescription. The actual drug we’ve been prescribed is Artane, which is similar to the Sinemet I’d heard of.  We have to introduce it very slowly and gradually increase the dosage so that we don’t run into massive unwanted side effects.

My hopes

This is the bit of my post I’m most apprehensive writing about.  I’ve know that brain injuries don’t get better.  So I’ve let myself believe that  as Chase is now at 7, this will be pretty much Chase’s level of physical ability for the rest of his life. Chase is being given something that may drastically improve his physical disability.  When this medicine does work it seems to work very well with carers noticing massive improvements.  Not only to a reduction in drooling but actual physical ability. In a small number of cases there’s also been massive improvements in speech.  To think that Chase may be able to even say a few words using his own voice would bring me indescribable happiness.  Chase’s inability to talk with his own voice is the one part of his disability that I’ve had the hardest time coming to terms with.  Although Chase is able to use a computer to help his communication it’s just not the same as hearing your own child’s voice.

A Reality Check

Don’t get me wrong I’m under no grand illusions. I know full well that the chances of this happening are slim.   I don’t usually do hope, I do cold hard calculated logic. I’ve found it’s the best way to protect my somewhat now broken brain cope with dealing with a disabled child.  It minimises the chance of dissapointment and feeling helpless.     I have no idea why I’ve got the urge to unexpectedly cling on to this idea of hope. I’m going to do it anyway and see what happens!

I’ll be regularly updating our journey with Chase’s new medication on the blog.  Please subscribe for future updates or like my Facebook page here 

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