[LMJP]

Hi everyone

Jake is 5 ( 6 in March ) with harsh right sided hemi - his upper limb is worse than his lower.

We have been told that Jake has Dyskinetic CP which means he has mixed muscle tone.

People Dyskinetic CP have trouble holding themselves upright , steady position for sitting or walking and often he shows involuntary movement - It also takes alot of hard work and concentration to get his hand in a certain position / spot because of the mixed tones.

Jake has never had any kind of input from medication/ botox - he has done very well considering !

To take Jake further we have been advised medication is now the only way and have been referred for Jake to have L-Dopa.

I was just wondering if any had used this medication before ? or know anything about it ?

I have typed it in on google ( which is never a good idea as all sorts appear ) I didnt understand any of it !!

Any help and I would be grateful

Take Care

Lauren & Jake x

[MrsP]

Try searching for levodopa, L-DOPA, LDOPA.

All of which mean the same drug. It is the same one as in the film Awakenings, and is the most commonly used treatment for Parkinson's disease (PD patients can have a lot of dyskinesia).
Levodopa is the precursor to the nerve chemical called dopamine. This means that when it reaches the brain, levodopa is converted to dopamine. People with PD lose dopamine nerve cells and so take levodopa to replace the lost dopamine.

When reading about levodopa - you will probably read that dyskinesia is a side effect of levodopa - but you need to remember that people with PD are continuously losing nerve cells (unlike CP) and so levodopa will affect them differently.
In people without PD, levodopa has been shown to be well tolerated and safe over 20 years...

Am not exactly sure how it works in CP - does Jake have a problem in his basal ganglia? (it would be reported in his MRI/CT scans).

Just dont search for levodopa and dyskinesia - you will come across too much stuff. Be very specific about CP.

[LMJP]

Hi Mrs P

Thank you for your response. Jake started the medication at weekend- no significant improvements yet but he is only taking half a tablet - he will be built up to 6 halves a day !!

I am not too sure what you mean by basal ganglia ( Ive not heard this term before ) ?

Like you have said , the doctors have said it is used widely for people with Parkinsons Disease ( I hate the word Disease !!! ) due to the dyskinesia.

I know the medication is for the brain to help control the movements ( or lessen the movements / relax )

I have recorded Jake walking and eating his team , looking to do this again in a couple of weeks - see if there is an improvement!!

Thanks