Patrick's Tests

We spent the day in Southampton hospital yesterday so Patrick could have his special eye tests and so that they could take lots of blood and urine samples from him (poor thing).
We are pleased to be able to report that his eyes are fine. The tests they performed were very complex, they had to attach some probes to Patrick's head and sit him in front of a TV screen showing black and white squares that he had to focus on. Unbelievably Patrick was so tired that he slept through the whole test and the poor assistant had to hold Patrick's eye lids open! It's amazing what technology they have as they were able to tell exactly how Patrick's brain processes what his eyes can see and thankfully he can see really well. They also looked closely at his retina which was more important for diagnosing his condition. They did this by attaching probes just under his eyes and then holding flashing lights in front of him in various colours and speeds. The Dr was really pleased with him and said that she could see nothing wrong with his eyes at all and that they could now rule out several nasty degenerative conditions including Battens disease. The flashing light test also proved that his epilepsy isn't triggered by flashing lights which is handy to know.

After his eye tests we had a consultation with Fiona who explained that they are now going to send off his blood samples and urine to be tested for various other conditions. I did ask what exactly they were looking for and Fiona proceeded to read out a very long list of Metabolic, Genetic and other disorders and left me none the wiser! What I did understand is that the majority of these tests have been done before and had negative results so they are just double checking and there are several things they are testing for that his symptoms don't quite match with so are unlikely to come back positive. There are a group of Genetic tests that haven't been done before so they could show something. We have to wait until the 20th December for the results so we'll let you know if they find anything.

As far as Patrick's seizures go, they're still pretty stable at the moment. He has had a rotten cold and a temperature over the last few days so he's had a couple of big ones but in general he's much better than before and is only having the odd jerk, more of a muscle spasm than a full seizure.

As always I'll let you know if anything changes over the next few weeks, hope everyone is well and looking forward to Christmas as we are.

Take Care, Love Gemma xxx

Meds Update

Hiya, Sorry it's taken a while to update, I've been waiting to see if his new meds work so I had some definite news to report.

So, I took Patrick to see his neuro a week ago last Monday. When we arrived for the appointment he was fast asleep so I deliberately woke him up in the hope that he would have a seizure (sounds awful and I felt very guilty but it is always better if his neuro can see him fitting as it makes it easier to prescribe the right drugs). Thankfully he did have one of his bad seizures so she was able to get a good look at him close up and see that we weren't over exaggerating the severity. Anyway, Fiona has now introduced a new medication called Clobazam into the mix, he started off last week on a very low dose and it will be gradually increased over the next few weeks. I have to say though that within a few days on this medication his seizures have got better. Instead of having bad ones at any time for the past 4 days he has just had one during the day and one at night so that is a massive improvement. I don't want to tempt fate but yesterday and last night he didn't have any 'proper' seizures at all, just a few light jerks. If he carries on improving as the dose is increased we may get him seizure free which would be fantastic as he hasn't gone a full day without fitting for 6 months!
Not having seizures has a massive effect on his personality, yesterday he was in a great mood all day and when he's happy he's noisy! He is still limited in his communication but when he's happy he squeals with excitement at the top of his voice! He'll lie on his play mat kicking his legs and waving his arms and just makes noise. He does this at 6 o'clock in the morning when he wakes up but you can't feel grumpy with him, he sounds so happy to be awake you just can't help but smile, he's the best alarm clock I've ever had! There's no volume control with Patrick at all, he just does loud, you can't hush him as he doesn't understand that so yesterday in particular our house was full of noisy happy sounds, it was great!

Anyway, I've got to go take Isaac to school and start the busy day, will update more at the end of this week. xxxx

Seizures

Hiya,

Patricks seizures have changed again and unfortunately seem to be going back to the Spasm type seizures that are quite distressing for him. We have spoken to his Neurologist and are taking him in to Southampton tomorrow (Monday) so she can have a look at him and sort his meds out. We have been weaning off a couple of meds over the last month so this is probably down to that, we may end up having to stay in for a couple of days while they try and get on top of his seizures again, we'll let you know how we get on tomorrow.

In the meantime here's some more pictures of our baby boy in his new chair! We have been leant this new equipment temporarily until social services can issue him with his own more permanent one. This one is a little too small for him really but it's great as it gives him full support and helps him sit up properly which will hopefully help towards strengthening his muscles. He also has a new bath support which is a great help as bathing him was getting very difficult as he is so big and heavy.

Test Dates

Hiya, just to let you know that we have the date for Patricks eye tests and blood tests. We're taking him to Southampton on 29th November so we'll not have any new news until the end of the month. Patrick is still amazing us every day with his strength, he actually managed to hold his bottle the other day which was a great achievement. His seizures aren't too bad at the moment although they seem to be creeping up in strength and number again so were keeping a close eye (nothing new there!).

Thank you for all your support, we have received several kind messages that really mean a lot. We are coping quite well really under the circumstances, we are still able to stay positive and are carrying on as normal. We're not in denial, we have fully accepted what may lie ahead but we're taking each day as it comes and today Patrick is doing OK so we're OK, if that makes sence.

For those who gave Patrick money for his christening, I have bought some fun things for him. He now has a new musical vibrating rocking chair, a giant multi coloured bean bag to nap on and a soft foam play mat so thank you very much. Our lounge now looks like an indoor play centre but who cares?!

Anyway, I'll leave it there as Patrick is sitting on my lap waiting for the next chocolate button, he's not impressed at the long wait between each one as Mummy is distracted!

Christening Pictures

Mummy, Daddy and me

My parents and Godparents with my brother Isaac and I. (My biggest brothers were camera-shy!)

Mummy will be adding more photo's later