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

Some Sad News

I'm really sorry to say that this blog entry is not going to be a positive one so for those who might be reading this while at work, you may want to save it 'til later.

As you know Patrick had his MRI scan on the 18th October. We have now received the results and have a much clearer idea of Patrick's condition.

You may remember back when this all started that Patrick had an MRI done at Poole hospital. That scan showed that everything was normal apart from there seemed to be a little less white matter than there should have been for his age (White matter coats the brain and protects the nerve fibres). At the time they said that this news wasn't that significant as he was so young and the difference wasn't really that much to worry about. They have now been able to compare his latest MRI with the one they took back then and unfortunately the results aren't good.
Not only is there less white matter than there should be but it seems that between the 10 week MRI and now, he has actually lost some white matter. This indicates that Patrick has a degenerative brain condition. What this means is that they think that over time Patrick will lose more white matter and gradually lose motor skills and his development will basically go backwards. Patrick has to go back to Southampton for further tests over the next week to confirm all this, they need to look at his vision processing (how his brain interprets what he sees) and also take blood and urine samples. They are confident that they will be able to properly diagnose his condition and then hopefully we will have more information about what to expect. If they don't get all the answers at Southampton he may end up being referred to Great Ormond Street. We have been told already though that whatever the diagnosis, it is highly unlikely that there will be a cure or any treatment that will stop the condition, and therefore this condition would be terminal.

As you can imagine we are totally devastated by this news and were really shocked. Patrick has been developing really well recently and seems to be gaining skills - not losing them, even Fiona his neurologist said that she was really surprised at the results as she has seen him several times over the last month and can also see that he is getting stronger and more responsive.
Fiona did measure his head while we were there on Friday and unfortunately his head hasn't grown much at all over the last 4 months, this is also an indication that his brain isn't developing and growing as normal.
We can only hope at this stage that he'll prove them all wrong and somehow he'll be fine.
The weeks ahead are going to be difficult as we find out more and we'll of course keep you all as updated as we can.

For now we can only take each day as it comes and continue to try and work at bringing on his development with lots of physio and love. We are trying to carry on as normal and be as positive as we can be. This news changes nothing and everything all at once, it changes nothing in the way that we will care for Patrick and stay strong as a family but it changes everything in terms of the services we will now get access to and the respite care we will be able to use. We are obviously concerned about how this news will effect our other children, in particular Isaac who we will try and protect from the worst as much as possible but also Ashley and Billy as they are old enough to fully understand what may lie ahead.

For those of you who joined us for Patrick's christening, thank you for helping to make it such a special day. I hope you can understand why we didn't tell everyone the news until now, we didn't want Patrick's day to be a sad occasion. We are more determined now than ever to make sure that whatever happens in the future, we make lots of happy memories along the way and Sunday was one special day that meant a lot to all of us.

As you read this and digest the news, especially if you have children yourself, take the time to reflect about how precious all our children are, every hug, every smile and every giggle is a magical moment to cherish. It is so easy to get complacent and take the smallest things for granted. One thing we have learnt is that life is far too short and we all need to make that little bit more of an effort to spend time with family and friends.

Keep your eye on the blog, we will be updating it soon. xxxxx

Quick Update

Just a quick one to let you know where we are at the moment.

Had an appointment at the beginning of last week with Patrick's neurologist at Southampton. We took some video footage of Patrick fitting to show her as his fits have changed slightly and it was her opinion that Patrick does not have Infantile Spasms but is in fact having 'Complex Partial Seizures'. The main difference in the physical appearance of his fits is that there's a definite build up, first his arms and hands start fiddling (looks like he's playing the harp) and his breathing gets a bit deeper. Then he will stretch his arms and legs out and hold it for a second then he repeats this for about 5 mins.

I guess if Fiona (neuro) is right then it could be good news for Patrick as Complex Partial Seizures are far more common and easier to control. We have been given a new medication called Carbemazepine, it does make him sleepy so we're weaning him on to it slowly and wont really see if it's working for about another week. He is still taking the others but we'll begin the process of reducing those soon. We're a bit stressed out with it all at the moment as this new medication sounds great but unfortunately it does come with the risk of making him worse. If his neuro hasn't got it right and he is in fact having Infantile Spasms, this particular med could actually work against him and make his seizures worse. We are closely monitoring him and timing his seizures at the moment until we are confident that isn't the case. He is at the moment still having around 12 fits a day including 2 during the night so it is still a lot to deal with.

Development wise he is still doing well, still enjoying being thrown about and he does seem to be getting a bit stronger in his legs. He has no interest in holding anything at the moment and we're still no closer to getting that head control but he's happy, which is good enough for us. Patrick's physio and occupational therapists are working hard with him and have been giving us a lot of support, with that support comes equipment and so far Patrick has a special chair to sit in and 'corner' table to use all to encourage his head control. This is great but anyone who has visited our house will know, we are a little over crowded to say the least so new equipment is fab but Patrick is taking over the house! There is talk of Patrick needing a special bath support as bathing him is becoming increasingly difficult as he's so big but floppy (weighs 20lb now!) that will be a major problem is our house as these supports take up half the bath and are fitted in, so he'll be alright but the rest of us will have to make do with a cold hose down in the garden I think!

I took Patrick along to an under 1's club last week. It's the first time I've taken him to anything like that and if I'm honest I found it really hard. Patrick was the oldest baby there with average age being 3 months. It was shocking to actually lay him side by side with these tiny babies and watch them rolling around trying to escape when all Patrick can do is lie there and smile. He does win the prize every time for most infectious laugh though and is the most good looking baby so what he lacks in ability he more than makes up for in cuteness!

Anyway, I'm gonna leave it there, it was supposed to be a short entry as we have a really hectic week this week. Got Portage starting tomorrow (a kind of development through play session), Physio and OT on Thursday and on Friday I am meeting a woman who has an 11 yr old disabled daughter with epilepsy so that should be interesting. I am also in touch with a woman from Southampton who's 2yr old son has a very similar condition to Patrick and I will be hopefully going to visit them soon so that may give me a better idea about what the future may hold.

Everyone else is fine, Isaac's loving school and we were proud parents last week at his Harvest festival assembly that he had to sing in, bless.

Hope everyone is ok, love to all, Gemma xx

A Good Week!

Just a quick one to let you all know what a great week Patrick is having. He isn't seizure free but developmentally he is doing really well. Up until a couple of weeks ago it was very rare to get any show of emotion from Patrick at all, he wasn't focusing very well and was generally not too good. At the moment all this has changed and he has found his laugh! He has a constant smile on his face and laughs at everything, even his own fits make him smile! As he is getting bigger, I have gained a lot more confidence with him and have started treating him a bit more like a 7 month old baby and have been playing rough and tumble (well, as he can't move himself I have been throwing him about!) and we've discovered he responds really well to being over stimulated, the rougher the better, this will really help with his physio. He has a wicked laugh and is really ticklish. He also responds really well to loud noises, I have been buying several different toys, bells and baby cymbals and he loves it.
He still can't hold his head up well but it is improving, his legs are like jelly with little or no control and his left arm is pretty floppy but we're working on it.

He has been on a slow increase of Topiromate and has been weaning off the steroids and although he is still fitting around 12 times a day, he is coping with that and so it seems to be a happy medium. The night times are a little worse, he tends to wake up around 2am then again around 5am with a fit that can sometimes last 5mins or more, we have been given some Midazelam for those which stops it instantly but thankfully haven't had to use it too much (it can slow down the heart and breathing rate so isn't something he can take often). In total with his fits then settling down again me and Martin are both losing a good 2 hrs sleep every night but as Patrick still can't cry, he just gurgles and chuckles to himself we can't be stressed with him. We spend the days walking round like zombies but we're happy zombies!

Other news - we managed to escape to the Isle of Wight for the night last Thursday, we joined Martins family who are over there for a holiday. We had a fab time and thanks to everyone taking care of Isaac and me we actually managed to relax a bit for a few hours at least so it was worth the stupidly expensive ferry fare just for that, plus we all got spoiled by family, which is always nice.

Isaac has settled really well into big school and is loving it.

We're back to see Patrick's neuro next week so will update then xx

Long Long Summer...

Hi All, Sorry again for the lack of information, it's been a very hectic month what with appointments every 5 mins and Isaac to entertain, it's been pretty tiring. Anyway, it's been a very up and down few weeks really. The last post I wrote at the beginning of August was quite positive as Patrick wasn't having any spasm like seizures. Unfortunately that didn't last long and just as we were becoming a bit relaxed he started up again. Thankfully he hasn't had any spasms that have been strong enough to distress him but he has been having about half a dozen a day which isn't good. We took him straight back to see his Neuro at Southampton who increased his medication to take into account his weight gain. We waited a week on the higher doses to see if that worked but unfortunately it didn't so it was then decided that they would put him back on the steroid Prednislone that he was on way back when he came out of his coma. They put him on a high dose and again we had to wait a week to see what happened. Not a lot changed so his neuro decided to increase the dose again and he's been on 60mg a day which is a massive dose. He was only able to be on this dose for 7 days as it can have serious side effects we have had to keep a close eye on his blood pressure and take extra care not to let him come into contact with anyone who is poorly as the steroid knocks out his immune system. So far all this change in meds hasn't really helped him. He is still fitting at least 6 times a day, he has had 2 EEG's over the last few weeks but they haven't shown anything significant. It is looking less likely that the seizures are all coming from one area as we were hoping because as predicted the patterns change with every scan. Hopefully he will have his repeat MRI soon so that may show something. Development wise Patrick is doing OK although it's swings and roundabouts as he can have a really good day when he seems really alert and is smiley and playful. Then he might have a bad day when his seizures are worse and then he regresses again and becomes jittery and loses his focus. He is very vocal now and likes to make his presence known, especially at 2am which is nice. One milestone he has reached is that he is now eating solids. He has a large appetite and a sweet tooth and although it can take a while to feed him, he does really well. If he's having a bad day with his seizures it's a bit more difficult as the concentration isn't there and he can't put the effort in to swallow much so we go to the bottle but that's not a problem.

We are back to Southampton to see his neuro tomorrow, he is having physio and occupational health on thursday. We now have an early support worker on board who helps us out with claiming the right benefits and makes sure we are aware of all the services available. So our diary is chocca at the moment.

The rest of us are all ok, I have joined a Pilates class to help me look after my back because as Patrick is getting bigger he is getting more and more awkward to lift and carry around. Billy did really well with his GCSE's he didn't get anything below a C grade and managed quite a few A's, considering his exams took place at the hight of Patrick's problems we are both particularly proud of him. Ashley is now looking forward to his year out, he is booked to fly out to his Mum's in Gran Canaria in November so that will be great for him. Isaac is starting big school this week! I'm not quite sure how I feel about this but he is quietly excited and a little nervous I think.

I will update again when I get a chance and hopefully have some better news.

Much Love xxx

Full Update

Hiya, Sorry there's not been much up-dating over the last few weeks, we were waiting until he'd had all his appointments so that we had more to tell.

We had a busy week last week but a fairly positive one. We had an appointment with Patrick's Neuro at Southampton last Thursday. She was quite pleased with him, his seizures are still under control at the moment which is good. He's having no spasm like seizures at all at the moment, just the odd focal seizure, usually if he is startled or just as he is waking up. He has had no negative reactions to reducing the Sodium Valproate so that is good news. He is nearly off that now, just down to 1ml twice daily for the next 2 days then off it completely. They have taken some more blood to be tested, I think they're looking at his white blood cells but she said not to get excited as she's not convinced they'll find anything significant.
At least she's honest. Fiona voiced concern about his physical development, in particular his clonus (foot thumping). Apparently this should have worn off a bit by now but it hasn't so this may be a sign that he will have problems with his legs and feet in particular.

Patrick had his sight tested on Friday at Bournemouth hospital. We have been really worried about his sight and were expecting bad news as Patrick is still not fixing and following properly and sometimes he doesn't respond at all, even if you wave something right in front of his eyes. Something that would make the average person flinch or blink, he doesn't even seem to see. Anyway, the consultant gave him a thorough examination, or tried to as Patrick wanted to sleep through most of it which makes looking at his eyes quite difficult! It seems that Patricks eyes are perfectly healthy which is great, he agrees that something isn't right and that he does lack focus but this may be his brain not processing the info properly rather than a lack of vision. There are further tests that can be done to tell us exactly what Patrick sees but these will be done a bit further down the line. It is likely that his focus and vision will have been set back like the rest of his development and that it will just take time to get back to normal so he will be monitored closely and has to go back to the consultant in 2 months time.

Patrick also saw his physiotherapist and occupational therapist on Friday. They both had a good look at him and could really see some improvement from his initial assessment at the beginning of June. Patrick is still very behind with his development, in particular his muscle tone is still very low in his neck and shoulders which means he can't hold his head up and his arms are particularly floppy. In that sense he is still like a newborn so he is quite difficult to handle as he is constantly putting on weight and growing bigger. They have given us a special tumble form chair to sit him in that can be positioned quite upright, this should encourage him to hold his head up a bit and this will also be handy for when I start to wean him soon. They are concerned about his legs and feet, his feet tend to point inwards and are usually quite stiff so they've given us some exercises to do with him that might help loosen him up. He has to wear special insoles in his shoes to help straighten his feet a bit. His hands are also a worry as he tends to keep his thumb bent inwards so they may end up giving him a splint to improve that, he can't really grip anything at the moment so we need to work on his hands to encourage him to explore different textures etc. It would appear that his left side has been affected worse as his left shoulder, arm and leg is considerably more floppy and harder to control for him.

So, he still has a lot to contend with and we have lots of work to do to improve his development. No-one can tell us yet how well he might progress but we can see little improvements day by day. He is very smiley and happy and has a wicked laugh, he laughs out loud whenever the dog barks which is cute.
For those people who are registered on facebook.com there is some video footage of Patrick smiling and playing on my profile page. If you're not registered on there yet, if you register your details just search for my name and invite me as a friend, you'll then get access to any video's or photo's I upload.

Take it easy, enjoy the sunshine,
Love Gemma, Martin, Isaac, Patrick, Ash & Bill xx