Nureologist appointment on Monday

donnajane

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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.
 
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Donna, Although I am new to this site and have not officially gotten a diagnosis yet....I would say that if it were me going to your appt. Monday, I would tell the dr what the primary dr says he thinks it is and get a clear diagnosis. When you get your clear and definite diagnosis on whether this is due to anxiety or a seizure you'll have to cross that threshold. Until now, you can't make that decision because you haven't had a clear diagnosis with these episodes. If it is indeed a seizure and you find out the particulars...I would further research as to the best medication being used for it. That's what I would do in your shoes.
 

donnajane

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Thanks for the reply. We had the appointment last Monday sorry if my post was confusing re this. Believe me I have asked his main Neurologist what he thinks it is several times. My sons case has been presented and discussed by several groups of neurologists. Sadly his case is very unique. I use to get really frustrated but I have now come to realise how unusual his case is. Every one of his specialists say how unusual he is.
One thing I am so thankful is that they are still looking for answers so they can help him.
 

Nakamova

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Did you get a chance to mention the possibility of Glut-1 syndrome, or is that not something this neuro would be familiar with?

Why did he stop the Clobazam?
 

donnajane

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Hi, yes mentioned the Glut-1 but I think from what he said the test for Angelmans syndrome is similar so will look at that after the Angelmans test. Also wants to check with the Hospital re which tests the metabolic team have done.
Re stopping the Clobazam was due to it being addictive I think and he also seemed to have become a little use to it and it seemed not to be working as well. Well that's what we thought but after the last few night we are starting to think differently.
Do you have any idea how long it might take for him to "settle" after stopping a med. We saw his GP tonight and he said to give it over the weekend then to email his neurologist and also bring him back in to be checked over again if he is still struggling at night.
I am sure I will find out more when his Neurologist sends us out his notes from the appointment on Monday. He is so good and within a week we usually have a page of notes re what he discussed in the appointment, which means I get to check back over if I understood things properly at the appointment. His GP and all of his other specialists are all sent a copy of this letter as well.
 
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I don't know how I posted this post here...but, I am sorry....it wasn't meant for Donna...that goes to show you all how out of it I was that day...c'suza :)
 

Nakamova

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Donna -- I think your GPs advice regarding the Clobazam is good. People have different "withdrawal" reactions to the brain meds, and kids are particularly hard to gauge in this respect. I hope things calm down for your little guy.
 
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