Worried mummy

So I have not blogged for a while. Archster has been doing well overall. He is currently on 600mg vig am and 550mg pm plus epilim 6ml bd. At the weekend he was admitted to hospital. He woke up Saturday morning and seemed to be having constant seizures, a combination of drop attacks, absences and focal motor. He also has started doing new seizure like movements, pushing his tongue out, flicking his left wrist?? This cluster lasted about 3 minutes. Dr wanted to give him midazolam which is emergency epilepsy drug to stop the cycle. He picked up during the afternoon so he never got the drug. We discharged him even though they wanted to keep him in for monitoring.on Monday tea time the same thing happened again. I rung paa and they said if it happens again to bring him in. Despite these two clusters he is still having a lot of seizures. Dr wildig advised us to go to the max of vig 600mg bd which we will do tonight. I do know lots of kids on infantile spasms forum that are on much bigger doses of vig, however, I also read that if it is symptomatic, which archsters is, then vig is not the answer long term. I am desperately chasing the referral for keto diet as think this may be a good option for archster. He has MRI on 1st June to see if surgery is an option. in the meantime, I am stressed to the max, desperate to give up work but can't afford to and praying for a successful outcome of court case soon!!

Got my boy back!

Well, so much has happened since my last post! I have changed his consultant from dr yeung to dr wildig, although not seen her yet. Archster has neuro appointment in march with dr ferrie. He advised archster go back on vigabatrin and half the dose of topiramate. By halving it, we saw instant improvements! He got his appetite back and not so sleepy. He able to play again. Going up on vig by 1ml each week. Currently on 3ml bd. seizures pretty much under control and his personality is back!! Finally he is enjoying life again!! EEG results showed slight improvement! Looks like he needs the vig to control his seizures. I joined infantile spasms forum and many parents find vig the wonder drug and their kids on it long term.

Archster has learnt how to use interactive device for bubble tube! Little star!! He picked it up instantly, pressing buttons with two fingers at right pressure to change colours and turn bubbles on and off. It's his new favourite thing!!

Professor levene

Well, professor levene came today. He's a lovely man and handily lives just up the road. He was very positive about archsters future. Said he could see no sign of cerebral palsy in his legs therefore would walk. He has diagnosed him with spastic monoplegia due to the increased tone in his right arm. He feels that with regular physio and ot this will improve but never be 'normal'. He diagnosed him with cortical visual impairment which is difficulty making sense of his visual input. His advice was to declutter his environment as much as possible. He also diagnosed him with hemianopia which is no vision in the right side of both eyes. To increase his chance of learning about the world, we are to present items to his left side. He has recommended a gentleman called professor dutton who is based in Glasgow and is an expert in cvi. I googled him and he has written some useful articles. Professor levene feels archster needs to see physio much more often and ot. He also recommends we insist on regular appointments with neurologist dr ferrie. The main aim is to get his epilepsy under control which at present, it is not. He would like to see archster in 2 years to see his progress and make a more accurate prognosis for his future. Hopefully we will win our case and be awarded enough money to pay privately for the best experts in epilepsy, cvi, physio and ot. Here's hoping!!

Difficult day

Today started strangely with a call from neurophysiology department at st Luke's. They need to repeat archsters EEG due to needing more information when he is still. We are booked in on Tuesday at 2.30 for a 2 hour slot. Poor love he hated having it done yesterday and now he has to go through it again. I might shave his hair off in prep although that is going to be a mammoth task/trauma for him in itself. He's had a lot of drop attacks today, holding his breath at the same time. Also twitching right side of his face frequently. He's developed some unusual behaviours which may be seizures including shrugging his shoulders, shivering and pushing his tongue under his bottom lip. I've cried a lot today! Hubby blames last nights red wine but I feel I'm struggling to cope. Archsters getting heavy now and it's becoming more effortful carrying him about. Professor levene is visiting tomorrow for our court case. He's going to assess archster and write a report based on his findings. Worry!!!