Q: I am a father of a one year old boy suffering from cerebral palsy due to prematurity and hypoglycemia. Three months ago he developed myoclonic jerks. They were mainly realized to occur immediately after getting up from sleep appearing as single shake of head repeating 3-10 times with tearing eyes. He was treated with sodium valporate ( 200mg per day ). The boy weight is about 9kg. The jerks were under control for some time but appear to get worse now.
I am interested to now more about myoclonic jerks. What are they? What are their causes and what may they lead to in the worse case? How can they be controlled?
Based on the above description of my son, do you advise to increase the dose or is there a new medication which is considered to have a better result? We were also advised to treat the boy with nootropil which is a psychotropic agent acting directly on the brain to improve the efficiency. Is this an advisable medicine for my son's case. Is it normally a recommended medications for a boy in his age?
I have booked an appointment for the boy this September in the London Bobath center for physiotherapy. Based on your information, do you recommend any other place? I have also read about treatments using the dolphins. What is the science opinion about such approaches? If you are unable to answer my questions, can you advise me with any association address to discuss the matter with them?
Your time spent with me and effort to respond is highly appreciated
A: It seems that you are coping with a difficult situation and one that can seem very frustrating at times. In many ways the problems which you raise are not different in many ways from those faced by children and families who have had the complications of prematurity. My best advise, overall, is that, since there are no "cures" currently available for the underlying damage, that you stay with the more traditional supports and treatments; there is really nothing new out there, most "new" things are old treatments under a new name or with a minor change. None of these have been proven so that your best approach always is to seek out the real evidence for anything out of the traditional approaches before you invest your time, money and child's energies in it.
In terms of the myoclonus which you mention. It is difficult to say exactly the source. I suspect that it is a form of seizure, perhaps even Infantile Spasms, although a full neurologic report with EEG would be necessary to give an exact diagnosis. The best approach is to utilize the medication which worked and use it aggressively unless some toxic effects are seen. Valproate is a good start and appears to have worked; I would use more, follow levels and his response. If it is ineffective, then repeat EEG's might be necessary. If valproate fails at high levels, then other new drugs are available for myoclonic spasms, including lamotrigine, topiramate, and vigabatrin. If the myoclonus proves to be a movement problem without epilepsy, then benzodiazepines can be used, but they can make him sleepy.
Additional drugs for brain repair and function are experimental at best. I have seen no evidence of substantial benefit for children with cerebral palsy. This is one of the areas which I would view with great suspicion. The Bobath Institute and the Bobath method of therapy is very good in my opinion. I have good familiarity with its techniques and find them to be as effective as any while being neurophysiologically appropriate. Clearly I support this move. Some use of sensory integration techniques, which at this point is likely to be part of the Bobath method, is also good. More radical approaches such as "patterning", the Temple Faye method used by such places as the Institute for Human Potential (Doman-Delacato), or its latest title, offers nothing additional, is expensive in money and time, and may actually be harmful. Again, dolphins and other such therapies, are unproven and fall under the general caution which I began with. Again I wish you and your son and family the best in this difficult situation. Recall that children with neurologic impairments need not just medical therapy but will benefit from the array of supports and services that will assist them with their disabilities to function maximally. That must be your goal.