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Hiya, had an appointment at Southampton Hospital today with Dr Fiona Goodwin, Patrick's Neurologist. It was just a check up so there's not lots to report. Patrick was pretty sleepy when we got there so although Fiona was able to see him awake, he wasn't too responsive and he seemed to drift off into an absence seizure at one point, this is something we've seen before but usually only when Patrick has just woken or is really tired. Patrick had his weight taken, he's currently 11.6kg (25lb) so he's quite a heavy lad. He also had his head circumference taken and this came out at 45.3cm which is well below average. Apparently his head has grown from last time but it is significantly smaller than what it should be which is usual in a child with such major development problems and it indicates that his brain isn't developing normally, which we already know really.
We're going to withdraw the Vigabatrin but we'll do it very gradually, the last time we withdrew it it seemed to have an adverse effect on his seizures but he's so stable at the moment and we know that the clobozam and carbemazepine are working so now is probably the best time to get him off it.
We also discussed Patrick going on the Ketogenic diet, this is a fat based diet that is a great commitment but it is proven in a lot of cases to reduce seizures in children like Patrick. In lots of cases if the diet is working well it is even possible to withdraw all other medication. It looks like the Ketogenic diet will be the next course of action if/when his current meds stop working.
There's been another change to all our appointments now, we're taking Patrick back to Southampton on Monday for his EEG, then Tuesday for his MRI and we'll be going back on Thursday for the results.
Dr Goodwin is still waiting for some genetic tests to be processed but as before the few results she has had back have come back normal. She is now going to refer us to the Geneticists who may be able to get the tests done quicker and they may have other suggestions.
Also, it may be possible to get Patrick the chicken pox vaccine on the NHS, Fiona will speak to our GP and try and arrange it.

That's about it really, of course I'll be updating next week when we have the results of his MRI.

Take care, lots of love, Gemma xxx