We had a follow up Neurologist appointment last Monday and few interesting things came out of it.
He has stopped Clobazam, so far not a great result, break through events at night and very disturbed sleeping for the whole family, but hopefully this is just the adjustment phase and it will settle.
He is unsure if the Tegretol is helping or may even be hindering. Hard for us to say as our little boy is still having lots of issues but the Tegretol did seem to open part of his brain when he first started on it over a year ago. He will reassess this when we see him again in Nov.
He is going to organise tests for Angelmans Syndrome as our son seems to fit into a lot of the criteria for that but again I doubt he will have it as he also doesn't fit into what I have read some important areas. He was honest and said if he has this Syndrome there is not a lot medically that can be done but therapy will help.
He is referring him to an Rheumatologist as he is wondering now if what is happening is caused by an autoimmune condition as he still gets strange rashes, temperature changes etc.
He is also organising for him to see a psychologist as he feels he now meets a whole lot of the criteria for this term, sorry can't remember what it is it's not Autism but is for kids who have things like this and once he has this "label" he will then have more doors opened re funding etc.
He said he is hope is that by the time he starts school at 6 no one will be able to tell the journey he has been on to get to where he is but to me it was obvious that we both know this will probably not be the case yet still have it as our goal.
He is liaising with the other Neurologist we have so far seen once, who specialises in Metabolic disorders at the children's hospital so he can gain more assess to all of the tests he has done as sadly it can be hard at times to get copies of all results for all Dr's let alone for us to have on file.
Of course my precious little man said not one word during the entire 45min he spent in his office just played with the toys, yet we could all tell he was listening especially when his Neurologist said mummy would like a cup of tea so he brought me over a toy tea cup, so cute!!
So now more waiting for more appointments and more tests but I feel we are just one tiny step closer. It's a long slow journey but I do feel we will eventually reach a point where we understand more about his issues and what is causing them, treating them may be another issue but at the moment it is trial and error as no one knows why what is happening is happening.
He has stopped Clobazam, so far not a great result, break through events at night and very disturbed sleeping for the whole family, but hopefully this is just the adjustment phase and it will settle.
He is unsure if the Tegretol is helping or may even be hindering. Hard for us to say as our little boy is still having lots of issues but the Tegretol did seem to open part of his brain when he first started on it over a year ago. He will reassess this when we see him again in Nov.
He is going to organise tests for Angelmans Syndrome as our son seems to fit into a lot of the criteria for that but again I doubt he will have it as he also doesn't fit into what I have read some important areas. He was honest and said if he has this Syndrome there is not a lot medically that can be done but therapy will help.
He is referring him to an Rheumatologist as he is wondering now if what is happening is caused by an autoimmune condition as he still gets strange rashes, temperature changes etc.
He is also organising for him to see a psychologist as he feels he now meets a whole lot of the criteria for this term, sorry can't remember what it is it's not Autism but is for kids who have things like this and once he has this "label" he will then have more doors opened re funding etc.
He said he is hope is that by the time he starts school at 6 no one will be able to tell the journey he has been on to get to where he is but to me it was obvious that we both know this will probably not be the case yet still have it as our goal.
He is liaising with the other Neurologist we have so far seen once, who specialises in Metabolic disorders at the children's hospital so he can gain more assess to all of the tests he has done as sadly it can be hard at times to get copies of all results for all Dr's let alone for us to have on file.
Of course my precious little man said not one word during the entire 45min he spent in his office just played with the toys, yet we could all tell he was listening especially when his Neurologist said mummy would like a cup of tea so he brought me over a toy tea cup, so cute!!
So now more waiting for more appointments and more tests but I feel we are just one tiny step closer. It's a long slow journey but I do feel we will eventually reach a point where we understand more about his issues and what is causing them, treating them may be another issue but at the moment it is trial and error as no one knows why what is happening is happening.