Sunday 29 June 2008

Patrick's world...

A better week this week, it's been a quiet one so less stress all round. We finally got Patrick started on his Rufinamide on Tuesday. The hospital have given us his first months supply and he is on a gradually increasing dose, starting on 100mg (half a tablet) once a day then 100mg twice a day, increasing over the following weeks to 200mg twice a day. It's too early to say if it's working really, he is still having some strong fits, the day before yesterday he had loads of fits, more than usual. They were mostly mild but with a few really strong long ones. Yesterday he only had 3-4 during the day so there's not really a pattern emerging yet.



I thought it was about time I did a full update on Patrick's development so you have some idea of where he's at. It's easy to look at the photo's and see a healthy little boy who happens to have epilepsy. There's a lot more to him than that.

Patrick although seemingly thriving is still very far behind with his development. I read a book recently called 'How to rescue brain injured children' written by the founder of BIBIC which is another Brain Injury clinic in Somerset. Brainwave, the centre we are taking Patrick to was born out of BIBIC when some therapists thought that the BIBIC's regime of 6-8hrs of therapy a day was a bit extreme. Anyway. In this book it has pages where the development age of the child is measured by assessing various abilities, looking at this information, Patrick's development still seems to vary between 0-6 months.

Mobility is one of his worst area's as by 3 months of age a baby should be able to 'creep' on their stomach and move around. Patrick is now nearly 17 months and only just has voluntary movement of his limbs and this isn't very coordinated. Patrick will lie on the floor and kick his legs and flap his arms around like a newborn, he can get his hand in his mouth when he wants to but he can't reach for a toy very well (this is partly due to his muscle tone in his arms). He can roll over, which is progress but can't hold his weight on his arms so being on his front is hard work for him.



Patrick's Motor skills are poor, his hands are particularly tight, and are often clenched in a tight fist. Looking at the book his hands are only just on par with a newborn. He has a grasp reflex but his hands are often closed too tight, he will grasp our fingers but not for long, likewise, you can place a thin object like a rattle in his hand and he'll hold it for seconds before losing his grip and launching it.

His language skills are like those of a 3 month old, he can cry although he doesn't and he can make some vowel sounds 'aaaarrrhhhh' is his favourite at the moment. He is just starting to use 'M' and 'N' sounds but these just come out randomly, he isn't able to communicate what he wants, although his tone changes if he isn't happy so we have to listen to that and try and establish when he's not comfortable or if he's hungry, it's all guess work really.

Patrick's vision and auditory development are both good, he focuses well and will fix and follow on a moving object. He has good hearing and will respond to different sounds, e.g a sudden loud noise will make him jump, and he'll turn his head towards a sound. What is difficult to measure is Patrick's understanding of what he sees and hears. If we showed him a picture of our car, I'm not sure he would understand that it is a car although he goes in the car most days. We talk to him all the time about what we're doing but it's impossible to tell if he understands what we're actually telling him. Patrick just goes with the flow.

This all sounds a bit negative although that wasn't my intention, I just wanted to try and get across how Patrick is besides the epilepsy. Most people who read this blog don't get to see Patrick very often at all and those who do, usually see him asleep! With all the development issues it's hard to imagine that Patrick would be able to have such a character but he does. Patrick is very laid back and is a very happy little boy. He may not be able to communicate his needs but he has the most cheeky smile and finds almost everything amusing. Every morning Patrick wakes up at around 5am (or earlier) and starts the day by singing 'aaaarrrggghhh' at the top of his lungs, he'll have a few fits in between and as I refuse to function before 7am he'll lay there quite happily until we get up. As Patrick sleeps right next to me in his cot at 7am I get him out to give him a cuddle and as soon as I pick him up he starts laughing (this is usually accompanied by a large bout of wind!). He never cries unless he is in pain, and the lightest kiss on his nose can have him in hysterics, he'll lay on his bean bag blowing raspberries and clapping his hands while we run around fussing about, and despite all his problems he doesn't have a care in the world. We are satisfied that we are achieving what we set out to, which was to do all we can to make Patrick's life enjoyable and to help him reach his potential. Well, Patrick certainly enjoys himself in spite of his limitations and with the increasing amount of physio and the introduction of the Brainwave programme later in the year, hopefully we'll be well on the way to discovering what Patrick's full potential is.


So, hopefully that has given you a little bit more of an insight into Patrick's world. We are off for our break at Naomi House on Tuesday, we are looking forward to the rest but are also getting nervous as we're so used to having Patrick with us 24-7. It may sound silly as Patrick is only in a separate room and we're not really abandoning him but I feel so guilty already at the thought of putting him to bed and not being there when he wakes up. I'm sure after the first night we'll be fine and will wonder what all the fuss was about!

Note from Martin

We are delighted to announce the imminent arrival of a new addition to our family - OUR NEW VAN YAY! It is due to arrive on 8th July and we can't wait. Isaac is particularly excited about it and is planning what he is going to have in it for his comfort! Billy has cottoned on to the fact that he could earn a fortune by ferrying his pals about on a weekend. One of the words Gemma used in response to that idea was off. Lol.

Me? I just want a fridge to keep my Yorkie from melting.

Anyone got an old CB radio.................................? Breaker breaker......etc.......!

Sunday 22 June 2008

A frustrating week

Hiya, it's been a pretty long week really with a few disappointments along the way. Firstly, we still haven't been able to start Patrick on his new medication. Patrick started the week pretty badly with lots of strong seizures and we were told on Wednesday we'd get the new meds Thursday, then on Thursday the pharmacist wasn't in so we were told Friday and then we were told it was sorted and that the hospital would be supplying the drug for the first month and that they would call us to arrange it but that didn't happen either. We can't do anything over the weekend so I hope we'll hear tomorrow now.
We STILL don't have Patrick's new buggy! The last we were told was that they had the buggy but were waiting for some supports that would take a week to come in, that was 3 weeks ago! Every week they say they're due but I think they're just fobbing us off. We've just found out our new Van is ready for delivery, it amazes me that they have been able to custom fit a 6 seat Renault Master from top to bottom with various pieces of equipment, a van that was ordered a good few weeks after his pushchair and the van is ready but the pushchair isn't, it's ridiculous really.
Patrick had physio on Thursday, unfortunately it wasn't the best session as he was really sleepy from a few bad nights fitting. He was examined by his physio and OT and his portage worker was there too. They're not too happy with his limbs, his legs and his arms are a little tighter than before, even though we've been working on them doing lots of stretching exercises. I'm pretty sure that his seizures don't help. When he has a strong seizure his arms and leg muscles contract and his arms bend fiercely at the elbow and his legs raise off the ground. As his fits have been quite bad for the last month it's got to have an affect. They have made the decision to have some arms splints made for him in the hope they might straighten his arms a bit. I'm gonna have to take him in some time over the next month. They let us take home a large therapy wedge to lay him on and they're going to put his name down for a corner chair that will help him sit in an upright position as he is showing more potential in this area. He starts a 4 week course of hydrotherapy next month that will hopefully help loosen his arms and legs a bit, he only gets about 20 Min's in the pool once a week though so I'm not sure how much good that will do.
We've taken the decision to enrol Patrick onto the Brainwave programme. This is an intensive programme of therapy aimed at speeding up the development process in Brain Injured children. They do this by designing a programme of exercises and activities that we can practise at home. It works on the principle that with enough repetition the brain will basically start retaining information and dormant brain cells can be 'woken' and used to learn these new skills. They cover all areas of development and the programme is totally structured so we know exactly what to do in what order and why. I think that this approach although had work (we have to commit to about 10 hrs a week) will hopefully work for Patrick. We have an appointment booked in September for his 2 day assessment (we get to stay down in somerset for a couple of nights) they will use that time to examine him and come up with a programme, we will then have to take him back every 4-6 months to be re-assessed. I have added a link to their website if anyone wants more info, just look at the list of links on the bottom left of the page.

Patrick is still obsessed with eating himself! He has lots of little cuts on his hands where he has chewed them and has taken large sections of skin off his fingers, he must have tactility problems because he doesn't seem to hurt himself when he's chewing and he has some sharp teeth! We've tried lots of things to stop him doing it or at least to protect his fingers from damage, plasters and socks on his hands but these just get wet and make his hands sore or they fall off. I have just ordered him some baby Ski mittens! I'm hoping that as they are padded and waterproof they may just stop him doing any more damage. It's a bit warm for gloves and a shame to have to cover his hands up but we need to find something that works.

That's about it really, we are a bit quieter next week and then the week after we're off to Naomi house for a few days. I'll let you know if we do start Patrick on his new meds.

Hope everyone is well, Love you lots, Gem xxx

Saturday 14 June 2008

We did it!!!


Today was the day of the Charity Fun Run. Isaac and I completed the 3km run and Isaac managed to raise a massive £550 for the Childrens Trust Charity, not bad for a 5 yr old. Isaac actually ran most of the way round, only stopping for a little walk here and there, I had to struggle to keep up with him most of the way!

We had a great day and thank you all for supporting us xxxx

Friday 13 June 2008

New Drug

Hiya, been another busy couple of weeks and Patrick's seizures have been unpredictable but frequent, with some stronger than others. We took Patrick to see his neurologist and have now agreed to try out a new drug called Rufinamide. This drug is very new to the market and has only been trialed on children aged 4 and over who have Lennox-Gastaut Syndrome (a particular type of epilepsy) which Patrick doesn't have but his seizures have many of the same characteristics. At the moment we are waiting for Fiona to finalise the details and give us the prescription as this drug has literally only just been made available and isn't even in the books yet! We'll keep you updated as and when we start the treatment but keep fingers crossed.
Changing the subject completely, most of you will have seen the article about our gorgeous babies in the local news, we've been banging on about it for the past week! As you can imagine we were so proud and completely shocked that their story made the front page! I only contacted the Echo in the hope of just getting Isaac's name mentioned, didn't even expect them to print a picture so I embarrassed myself when I walked into Sainsbury's, saw the paper and shouted 'Oh my god that's my kids!'. We can't believe the response we've had to the story, in the past couple of days since the paper was printed the amount donated online has doubled and to date he has raised £522 for The Children's Trust, one particular lady donated £50 just off the back of the article. We have been asked to take Isaac along to meet the representative from The Children's Trust at the event on Saturday so they can thank him personally and his Headteacher is going to make a fuss of him at their school assembly today. The whole idea of me contacting the paper was to have the focus on Isaac for a change and let him take the limelight for being such a special boy, that has definitely happened and for that I thank everyone who has sponsored him and everyone who have sent such warm messages. I'm sure there will be lots of photo's of the day to follow. xxx

Wednesday 4 June 2008

Update


Hiya, had a really good trip to Naomi House last Friday. We were given a tour of the hospice and met several members of staff who all seem lovely. Naomi House is quite different to Julia's House, it's more like a private hospital. It's a great building in a really lovely location, surrounded by 'telly tubby' hills. All the children have their own room on the ground floor with doors that open onto the garden, and the family rooms are just above on the first floor. Patrick would have 1to1 care during the day and over night they have about 4 staff to up to 10 children but all the rooms have audio monitors. As Patrick has silent fits they said they would make sure his room was opposite the carers station so they could see him. We have been allocated 14 days that we can use this year although they are already pretty booked up. We are hopefully going to have our first stay there on 1st-3rd of July. We have asked for a 3 day stay as I think as it would be the first time leaving him (even if he is only downstairs) it will take us a couple of nights to relax enough to get a good nights sleep. We are going to have to go midweek and take Isaac out of school, they haven't got any weekends available until October but that shouldn't be a problem.

Had a good weekend, myself my Mum and Aunt did our 'Race for Life' on Sunday. Thankfully the rain did just about hold off and we managed to finish the course in 50 minutes which we were pleased with. We were a bit embarrassed to have been over-taken by a chicken, a giant bra and a lady on crutches but we managed to raise about £200 between us so we're happy.

Unfortunately Patrick hasn't had a very good week. His fits have been getting a lot stronger again. Last night he was particularly bad and from 2:30 - 4:30 he was awake and fitting quite badly one after the other, not really having time to recover in between. We gave him his madazolam which is his emergency med which did stop him fitting but it didn't last long and he was fitting again within 20 minutes. He did eventually manage to drop back off to sleep but was so exhausted this morning that after having his breakfast he slept right through until 2pm. I have spoken to his neurologist Fiona this morning who has suggested we go back up a little bit with his Vigabatrin, that will let us see if weaning that has made him worse and I have arranged an appointment with her for next Wednesday when she'll prescribe him something new.
Keep fingers crossed for him over the next few days, I'll let you know if anything changes.

Lots of Love xxx
P.S The photo above isn't us being cruel, we took the boys to a community fun day recently but Patrick slept through it. I always like to include Patrick when I'm taking photo's (I have a big collection of pictures of Patrick asleep in his buggy in various locations) and we didn't want him to miss out on the fun!