A Change For The Better?

Hiya,

I've been putting off writing this blog entry for fear of jinxing things but as this blog is supposed to be an honest account of Patrick's progress hear goes...

Patrick has not had a seizure for 8 days.

There I said it and am currently running round the house touching all the wooden furniture (damn this laminate cheap stuff!). This is a really significant change for Patrick as up until 8 days ago he was still having at least 6 seizures a day, they had changed slightly recently and we thought they were getting a little worse so to have them suddenly stop completely is very strange. There has been no change in any of his medication since the beginning of November so we are stumped as to why they should suddenly stop.
We have also seen a significant improvement in Patrick's concentration and his awareness of his surroundings, he has started to show an interest in his toys, whereas before he would simply ignore them and look away. He had a Portage session yesterday and he worked so hard, copied us banging his drum and laughed at the toys and the silly faces we made. Up until now it has been quite hard to get a smile out of him without being hands on with tickling him but now he will watch his brother Isaac running around being a loon and thinks it's really funny, a real joy for all of us especially Isaac as he tries so hard to make Patrick happy and loves this new positive response.

So it would seem for now that Patrick has turned a corner and you would think that we would be overjoyed, we are of course amazed and thrilled at the sudden progress he is making but with any change comes a new fear, the fear of the unknown. All the while he was having lots of seizures a day we knew what we were dealing with, knew the signs to look for and when he was most likely to fit and we were very laid back about it all. Now there are no seizures we don't know what to think. It is possible that Patrick can outgrow his epilepsy although we have always been told that it is highly unlikely as his epilepsy is so severe, it is also possible that Patrick's epilepsy has just changed. We may now see less seizures but when they happen they may be a lot worse than he is used to which poses more risk. So as you can see, although for now it is good news that he hasn't had any seizures, until we can establish why this is, we are extremely nervous and worried about what happens next.

We have been waiting for an EEG scan since November and I have tried chasing this up, that should hopefully tell us a bit more but I guess we have to just wait and see where things go from here. Keep everything crossed and I will update if there is any change or information.

I am now off the wheelchair clinic to get a bigger buggy for him, he's outgrown his one already in only 6 months!

Lots of Love, Gemma xx

Happy New Year!!

It's been a hectic start to 2009, a sign of things to come I reckon. Patrick has had quite a few appointments already, we saw a rep from Jenx last week who bought out a couple of bigger standing frames for him to try, he's so tall he needs a frame that's made for age 3-8yr old's, he's not even 2! They've also loaned us a special sleep system for a couple of weeks to see how he gets on with it, it should help prevent problems like curvature of the spine so is quite important. Both these bits of equipment are great but the NHS say they wont pay for them so they are approaching charities on Patrick's behalf to get the funding for them, the mattress alone on the sleep system costs £2000! We've had another visit from Patrick's Occupational Therapist who has closed his case for now as he has all the equipment he needs! I never thought I'd be saying that this time last year!
Patrick's health is really good at the moment, since he's had his new bed that has an adjustable base he hasn't had any chest infections only a mild cold that he recovered from quickly. We keep his bed tilted up a bit so his chest can drain nicely and it seems to make a big difference. He's also sleeping so much better, often going right through the night. We still have the occasional dawn chorus at 4am but in general there's an improvement.
Since Christmas we've seen a big improvement in Patrick's eating as well, I'm not having to puree all his food at the moment, before if there was the slightest lump in his food he wouldn't know what to do with it and would gag and often vomit. As long as his food is soft enough he is managing to munch lumps and is doing really well. He still has problems drinking but we're seeing his speech and language therapist next week and are hoping she may be able to suggest a special cup we can get for him. You can get thickening agents on prescription that thicken any juice or liquid making it easier for children like Patrick to drink but the ones I've seen are full of carbohydrates so may not be any good when he goes on the keto diet (still waiting for an appointment for that).
Patrick's seizures are also very stable at the moment, we've just spent the weekend at Naomi House and from the Friday to Sunday they only recorded one seizure! I was a bit unconvinced that he hadn't had any over night and thought that they had probably gone unnoticed as he's in a room on his own but for the past two nights we've been home and he's had none through the night so that is brilliant. He has had a couple today though but has a couple of big teeth coming through so I think that is making them worse. I am encouraged though by the noticeable improvement, especially as there has been no change to his medication in over a month.
He's been really alert over the last few days and is really responsive which is great, I am hopeful that this year will be a good year for Patrick.

We had an appointment with a Geneticist today at Poole hospital. It went OK really, we had to go over all the details of Patrick's condition and what he's been through and he drew our family tree and asked us questions about our family history. He said that as there are mainly boys in our family they can discount a lot of conditions already. He had a good look at Patrick and was generally pleased with him, he looks like a 'normal' child, no obvious signs of there being something wrong. He thinks Patrick will be a difficult case to solve as he has nothing to go on other than his epilepsy really but they have some blood samples at the lab and he took some photo's of Patrick to take back to his team who will be investigating. At this stage he told us that it is possible that he has a genetic disorder and so there is a 25% or 1 in 4 chance that if we had another child they would have the same condition. I got the feeling he was covering himself until he can tell us more. It is also possible however that he has a new mutation of a genetic disorder and if this is proven then the chances of it happening again are zero. All these investigations will take a long time though so we wont get any answers for a while.

Anyway, that's about it for now, we have a busy couple of weeks ahead, lots of celebrating to do with weddings, birthdays etc and various medical appointments in between. I'll update in a couple of weeks, hopefully with news about the Keto diet.

I hope everyone had a fabulous new year and wish you all the best for 2009!
xxxx