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

All is calm....

Hiya,

Just a quick up-date as nothing much to report. Patrick is doing really well at the moment. He seems to be responding well to his meds and is only having one infantile spasm a day that is very mild so that is good. He is still having loads of focal seizures though but these are easy to cope with (for us at least) as they only effect his face, he turns his read and rolls his eyes and his mouth goes funny as if he's chewing his tongue but this only last about 30 seconds then he's fine again and it doesn't distress him at all. This may get a bit worse as he gets bigger and starts getting teeth but we'll deal with that as and when we need to.

We were back at Southampton yesterday to see the Neuro's and they've decided to start weaning him off of the Sodium Valproate (Epillim). That is the only drug he's been on from the start so considering that he was still fitting really badly while on high doses of that it should be safe to assume it's not really doing much so hopefully wont make much difference once he starts coming off it. It should hopefully mean that he might me a bit less sleepy which would be great. He is very sedated at the moment and this will effect his chances of developing properly so it's important that we try and sort that out.

As for his development at the moment, he seems to be doing very well. He is really smiley and happy all the time when he is awake which is great. He has an appointment at Bournemouth hospital next Friday to have his eyes tested so fingers crossed for that. I'm not sure on his vision at the moment, sometimes I'm sure he's got good sight as he seems to fix and follow well but when you watch him laying with his play gym he never seems to be looking at his toys just hitting out randomly in the hope that he'll hit one, it's difficult to say really so I'll be glad to finally know for sure next week.

Anyway, that's about it, keep fingers crossed for our baby boy as he comes off the drug, hopefully he'll be fine but there is a chance he'll regress a bit. We'll keep you up-dated over the next few weeks so you know how he's doing.

Take Care, Love Gemma xx

Home again, home again, jiggety jig...

Hiya, For those that don't already know we are home again. Patrick was discharged on Friday. It was felt that as the reason he had been admitted was so they could speed up the increase in meds and this had been achieved with some success, there was no clinical reason for him to be taking up a bed. Although Patrick is still fitting I agreed to him being discharged on the basis that he be treated urgently as an outpatient, we have an appointment on Monday morning.

Before his discharge Patrick was given an EEG which had some surprising results. The EEG results showed that the background activity that had always caused concern is now much less which made it easier to see what else is going on. There is now the chance that Patrick's seizures are 'focal seizures'. This basically means that they may be being generated from one area of his brain, in his case somewhere in the bottom right (I'm sure there's a technical term, I will find out). Although there is still a question mark over this, it is somewhat encouraging as if the seizures can be isolated there is some chance that even if he doesn't respond well to medication, they may be able to remove the part of the brain that is causing the problem. Now all this is very far off and Patrick will be having more scans and repeated MRI's as he gets bigger. The Neuro team haven't given up on the Infantile Spasm theory, Patrick's seizures have all the physical characteristics of Infantile spasms just no evidence to back it up. He is proving to be a very complicated patient and has some of the top Neuro's in the country completely baffled. In a way this is good news as I know that people like Professor Kennedy don't like to be beaten and the team will be doing everything they can think of to find the right treatment for Patrick.

At this moment in time Patrick is on 3 different anti-convulsants, Sodium-Valporate (a common anti-epileptic), Vigabatrin (usually for Infantile Spasms) and Topiromate (apparently good for focal seizures). He is also taking Biotin, a vitamin supplement that works along side the Vigabatrin. All of these medications have some sedative affect so Patrick is much more sleepy than he should be. At the moment he is still having the odd seizure, yesterday he only had one which was excellent but we have been here before where he has a brilliant day and we finally think the meds are working but then the next day he has 6-7 so it is early days. We are having to monitor and record every seizure, writing a description of his movements and how long it lasts. He has started a funny quirk of chewing his tongue and screwing his face up which we are told may be a focal seizure so we are monitoring that as well. We are also having to record his feeding patterns as he is so sleepy that he doesn't always manage to stay awake long enough to feed properly so we are taking advice from a dietitian for that.

So, a lot to take in I know, I'm still trying to get my head round all the details myself, hopefully we'll get some more info on Monday. It is great to be home though
and despite all he is going through, Patrick is absolutely gorgeous. Development wise he is still very floppy, he can't hold his head up but he doesn't let that bother him, yesterday he really started smiling a lot and he even giggled! He is very touch sensitive and loves having raspberries blown on his neck. He is a very happy baby and both Martin and I are proud as punch, he is definitely hard work as you can't take your eyes off him but we are used to that now. If he is sleeping and I am doing housework, but more importantly at night time if I'm asleep, he has a small wrist rattle that his Grandma bought him, I put that on his wrist so that if he does start fitting it alerts me immediately, a simple idea that works, until we can buy some more sophisticated equipment.

Anyway, I will update this after Monday when we know a bit more.

Take Care, Gemma xxx

a bit more news

but not a lot! The vigabatrin definately seems to have had an effect but Paddy is still having fits. Over the past couple of days, the fits have come down in number, quite dramatically in fact and those that he is havong are nowhere near as distressing for him either.

So far today (since 5.10 am) he has had only two fits which were very mild. Good news it seems but we had a similar run after he was put on the Topiromate initially so I am just waiting until I open my mouth too wide or too quickly so watch this space.

Love from the Conyards
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Getting cuddles from my baby