The appointment.

So we made it to the Paedicatrician's appointment (actually 45 minutes early as I had written the time of a cancelled appointment on the calendar instead of the new time - doh!)  When we finally went in they said it was a shame we couldn't have come to last week's appointment as that was the joint clinic with the neurologist!  What????  It is true! I had been sent two appointments, one a week after the other, and so being a dutiful and mindful user of the NHS I called the Paediatrician's Secretary and asked if they really wanted us at both or whether we could cancel one.  She said that we should cancel one, obviously (now) presuming that they were both the same - turns out they weren't and of course the one we chose to cancel was the wrong one!  It is so rare we get to see the Neurological consultant now it was a disappointment, but after getting over this it was a good appointment.

The doctor had thought about some of the things we had asked last time, including a question about Lead poisoning, so that was helpful.  We fed back about the ADHD drugs and about the Botox.  It was interesting/humourous watching a male Middle Eastern Doctor chasing a 9 year old girl around the room because he wanted to see her arm.  If only he had actually asked her before getting out of his chair to chase her then she may have said yes.  But to approach a High Functioning Autistic child without explaining why you want to have a look - just won't cut it!  In the end he decided to just let the physiotherapist do the follow up!!

One of the ongoing decisions we are trying to make is whether to try something called the 'Ketogenic diet'.  It is like a very strict, measured out Atkins diet, high protein and fat and hardly any (measured Carbohydrate).  It is a diet which has been developed to try to treat Epilepsy and is used in some children whose seizures are hard to control.  It works on the premise that if you limit carbohydrate in the body it basically puts the body into starvation mode.  This increases something called 'Ketones' in the blood and it has been discovered that raised ketones can prevent seizures - phew!  That's how I understand it anyway - if any of you have a clearer/better understanding or experience of the Ketogenic diet please do get in touch.  The interesting thing is that this is how Immi would naturally choose to eat - she really doesn't like carbohydrate that much and would eat a whole pack of butter if I let her.  Friday is 'Fried egg day!' and she would rather have a lump of cheese than a packet of sweets, so maybe this would suit her.

Imogen's seizures are still not well controlled despite trying many different types of epilepsy drugs.  The cocktail of 3 that she is on at the moment is making her so tired and we had mentioned in the past that we didn't like her being on 3.  Under the Paediatrician's advice we had tried to drop one called Keppra, but each time we tried to drop it the fitting increased.  So we talked this over with the doctor and epilepsy nurse and decided that we will try to drop out another of the drugs (Epilim Chrono).  We have to drop it one small increment a week at a time so it will take at least 6 weeks.  So that is the journey we are about the embark on over this next term - drop out the Epilim and if we need to increase the Keppra, whilst keeping the Lamotrigine the same - got it?  Clear as mud?  Good!   Now we have to go and chat to the GP as the letter from the Paediatrician never gets to the GP before we need a different set of drugs.  We started to get to know a GP at our new surgery, but didn't realise she was covering a maternity leave, so now we need to decide on a GP within the surgery and try to see that doctor each time - no mean feat in this surgery when you can only call in the morning and not make prior appointments! Hmmm.

In September we will have a joint appointment with the Paediatrician and the Neurologist from Queens Medical, Nottingham.  When we meet she will decide if there has been enough of an improvement or if the meds change fails (again) to control the seizures, we will try the diet. 

So do come on the journey with us - we could do with some good friends on the way!