Hello all
as we are sure you already know (most of you at least), Patrick has been re-admitted to Southampton General Hospital.
The reason for this is that following on from the posts below when we got the news from the EEG carried out after the appointment with the Neuro, his fits increased quite dramatically. Sadly, this time the fits seem to be causing him pain too as he really squeals and then cries quite wildly as each one hits him.
The seizures were coming in 'clusters' as the Neuro described them and he was having, on average, two to three clusters per hour when awake. On Tuesday he had 17 clusters just during daylight hours, that may not sound much but when you realise that each cluster averaged 10 seizures each, it puts it into perspective. 170 Seizures while he was awake! We are unsure just how much activity there is when we are all asleep but we are hoping to have a night vision cctv camera soon which will record any movement on his part and then e-mail a recording to us if there is any activity at all. We have a camera that allows us to keep an eye on him while we are awake but as he doesn't make much noise, unless he screams out, we wouldn't know if he was having a fit overnight. (If he is asleep during the day and fits, he makes far less noise generally.)
Tuesday evening was even worse and we made the decision to telephone the neurologist weds morning to see about getting him admitted. We were concerned that the new medication swap over was leaving him vulnerable as the old meds wore down and the new meds hadn't built up enough yet. During tuesday evening Gemma recorded in our notebook that out of 60 minutes between 9 and 10, Patrick was fitting for 28 of them!
By the time we got him off to sleep, we were both drained; emotionally and physically washed out. When the morning came, we left a message for the neurologist and she was able to contact us later in the day. Patrick was admitted wednesday afternoon and the whole circus strated again.
Thankfully he is now in a safer environment with regard to having his medication changed quickly and so the change has taken place. He has been violently sick a number of times and this is a known side effect of the new drug and Gemma tells me that this morning (friday) he is not interested in his bottle at all. This too is a side effect that we had been expecting. It all confirms to us that we did the right thing in getting him back into Hospital as I really don't think we would have coped at home. That is to say, yes we would have got the job done but I think it would have left us both in bits. There are certain times when as Parents we need to hand over control to those better able, better trained etc and it is the Medical team's responsibility to do things like this.
Well I am starting to ramble now so I will sign off for now but will try to update later as more news comes in.
Thanks for all the good wishes etc
Friday 29 June 2007
Friday 22 June 2007
Keeping Strong
A lot of people keep asking me how we are able to cope so well and stay so strong hroughout all this so I thought I'd just add a bit to explain how we are dealing with all this.
It has always been my view that things happen for a reason, I believe strongly in fate. Now, I could interpret all this in a negative way as a run of bad luck and think that I must have done something really bad in a past life to deserve this, if I was that sort of person I would have hit the bottle by now and would not be so strong. Thankfully I am able to always find the positive in any given situation, a quality I have learned over the years, having lived a very interesting and sometimes difficult life so far, I have experienced quite bad depression in the past and have chosen not to go through that again, therefore I must find something to smile about whatever the difficulties I face.
Patrick is a very special baby, there are thousands of babies born with disabilities all the time and there always will be. These babies need special care and lots of love and patience. Without blowing my own trumpet I know that as a family we have the patience and the love that is needed to cope with Patrick, I believe that special babies are delivered to special families. I'm not religious so I don't know where I get this belief but I know that I have always held this thought.
A lot of people have also said that they feel sorry for us and that we really don't deserve all this. My answer to that is, if special babies are born all the time, what makes us any less deserving than any other family? Patrick deserves the very best chance to reach his potential and we can give him that.
If someone shows sympathy, however well it is intended, it actually frustrates me. It's almost like saying 'Patrick's problems are a burden and you don't deserve it' and I feel very strongly that this is not the case. Patrick is beautiful and strong and I feel blessed to have him as my son, even with all his extra needs.
Thankfully Martin shares these views, making us a very strong combination, we are able to be strong for eachother and if one of us is having a bad day, the other can provide the lions share of strength for that day.
I have had quite a bit of contact with people with special needs and their carers through my work as a youth worker. We run a special club for Physically and Mentally handicapped teenagers. These people enjoy their life and live with no fear and are surrounded by strong people, I have never met a carer yet who couldn't find something to smile or laugh about, however tiring it may be to look after their child.
With all this said, I don't want you to think that I don't have my moments of despair, I wouldn't be normal if I didn't shed a few tears. But throughout all of this my tears have been shed for Patrick if he is pain or for Isaac who of course doesn't really understand the severity of our situation and will discover as he gets older and sees Patrick developing that he may not be able to teach his little brother to play football, something that he has been looking forward to since he found out I was pregnant.
I'm sure many people don't know what to say to us at the moment so they either say 'I'm sorry' or say nothing at all. We may not need sympathy at the moment but we do still need strength and some sense of normality so don't think twice about getting in touch, we're not able to travel too far from the hospital at the moment but visitors are always welcome.
It has always been my view that things happen for a reason, I believe strongly in fate. Now, I could interpret all this in a negative way as a run of bad luck and think that I must have done something really bad in a past life to deserve this, if I was that sort of person I would have hit the bottle by now and would not be so strong. Thankfully I am able to always find the positive in any given situation, a quality I have learned over the years, having lived a very interesting and sometimes difficult life so far, I have experienced quite bad depression in the past and have chosen not to go through that again, therefore I must find something to smile about whatever the difficulties I face.
Patrick is a very special baby, there are thousands of babies born with disabilities all the time and there always will be. These babies need special care and lots of love and patience. Without blowing my own trumpet I know that as a family we have the patience and the love that is needed to cope with Patrick, I believe that special babies are delivered to special families. I'm not religious so I don't know where I get this belief but I know that I have always held this thought.
A lot of people have also said that they feel sorry for us and that we really don't deserve all this. My answer to that is, if special babies are born all the time, what makes us any less deserving than any other family? Patrick deserves the very best chance to reach his potential and we can give him that.
If someone shows sympathy, however well it is intended, it actually frustrates me. It's almost like saying 'Patrick's problems are a burden and you don't deserve it' and I feel very strongly that this is not the case. Patrick is beautiful and strong and I feel blessed to have him as my son, even with all his extra needs.
Thankfully Martin shares these views, making us a very strong combination, we are able to be strong for eachother and if one of us is having a bad day, the other can provide the lions share of strength for that day.
I have had quite a bit of contact with people with special needs and their carers through my work as a youth worker. We run a special club for Physically and Mentally handicapped teenagers. These people enjoy their life and live with no fear and are surrounded by strong people, I have never met a carer yet who couldn't find something to smile or laugh about, however tiring it may be to look after their child.
With all this said, I don't want you to think that I don't have my moments of despair, I wouldn't be normal if I didn't shed a few tears. But throughout all of this my tears have been shed for Patrick if he is pain or for Isaac who of course doesn't really understand the severity of our situation and will discover as he gets older and sees Patrick developing that he may not be able to teach his little brother to play football, something that he has been looking forward to since he found out I was pregnant.
I'm sure many people don't know what to say to us at the moment so they either say 'I'm sorry' or say nothing at all. We may not need sympathy at the moment but we do still need strength and some sense of normality so don't think twice about getting in touch, we're not able to travel too far from the hospital at the moment but visitors are always welcome.
Back to the drawing board...
Hiya, Patrick had his first outpatient appointment with his neurologist yesterday and I'm very sad to report that it wasn't a great day.
In general Patrick seems to be doing well but for the past week he's been suffering from severe stomach cramps that reduce him to tears. We had consulted our GP who put it down to constipation but advised us to talk to Dr Goodwin (his neuro) about it. We upped his laxatives which has helped his constipation but the cramps didn't subside. We managed to get some video footage of the cramps and when Dr Goodwin saw this she said that it was unlikely to be anything sinister but booked him in for an EEG just to be sure.
It turns out that these cramps are in fact seizures. As you can imagine, this was the worst news for us to deal with as we really thought they had the seizures under control and had now been focusing on his development problems. What makes it even more hard to deal with is that these seizures actually hurt him, to the point where he cries out in pain, they only way I can describe it is that it looks like he is being electrocuted, if any of you have ever played with one of those toys that give out an electric shock if you press the wrong button, it's like that but for a 4 month old baby who doesn't understand what's going on this is really harsh. I've said all along, we can totally cope with any disabilities and development issues he may have, but what we really struggle with is watching our poor baby in physical pain and being able to do nothing to ease it. Of all the different types of seizure he could suffer from, this seems to be the worst as he's never shown signs of being in pain before.
So, we can now confidently say that he has not got a vitamin B deficiency so we can now stop giving him the horrible supplements he's been on that make him sick. They have also confirmed that although these seizures look a bit like infantile spasms (west syndrome) his EEG results don't show this to be the case either.
So they need to play about with his meds again and try and find another combination that will work for him, the plan at the moment is to Stop the Pyradoxil (Vit B) and the Folinic Acid. They are also weaning him off the steroids (Prednisloane) and then will look at reducing his Sodium Valproate and introducing a new anti convulsant (Topiramate) but his Neuro has said that they need to get clearance on that as it is never usually used in such young babies which scares me a bit. We have also put him back on a low dose of Phenabarbitone as he didn't seem to be having these episodes when he was on this, unfortunately Phenabarb is only used as a quick fix and not as a long term solution. We are monitoring him very closely at the moment as we are anxious that this may spiral out of control again. We have been told that if they become more regular (4-5 an hr) we should take him to Poole hospital where they can up his meds and we really would be back where we started. At the moment he is having between 1-3 an hour, some more severe than others, they don't always hurt him.
So, we're back on the roller coaster for a while until we get this under control, we'll update you as and when we can.
In general Patrick seems to be doing well but for the past week he's been suffering from severe stomach cramps that reduce him to tears. We had consulted our GP who put it down to constipation but advised us to talk to Dr Goodwin (his neuro) about it. We upped his laxatives which has helped his constipation but the cramps didn't subside. We managed to get some video footage of the cramps and when Dr Goodwin saw this she said that it was unlikely to be anything sinister but booked him in for an EEG just to be sure.
It turns out that these cramps are in fact seizures. As you can imagine, this was the worst news for us to deal with as we really thought they had the seizures under control and had now been focusing on his development problems. What makes it even more hard to deal with is that these seizures actually hurt him, to the point where he cries out in pain, they only way I can describe it is that it looks like he is being electrocuted, if any of you have ever played with one of those toys that give out an electric shock if you press the wrong button, it's like that but for a 4 month old baby who doesn't understand what's going on this is really harsh. I've said all along, we can totally cope with any disabilities and development issues he may have, but what we really struggle with is watching our poor baby in physical pain and being able to do nothing to ease it. Of all the different types of seizure he could suffer from, this seems to be the worst as he's never shown signs of being in pain before.
So, we can now confidently say that he has not got a vitamin B deficiency so we can now stop giving him the horrible supplements he's been on that make him sick. They have also confirmed that although these seizures look a bit like infantile spasms (west syndrome) his EEG results don't show this to be the case either.
So they need to play about with his meds again and try and find another combination that will work for him, the plan at the moment is to Stop the Pyradoxil (Vit B) and the Folinic Acid. They are also weaning him off the steroids (Prednisloane) and then will look at reducing his Sodium Valproate and introducing a new anti convulsant (Topiramate) but his Neuro has said that they need to get clearance on that as it is never usually used in such young babies which scares me a bit. We have also put him back on a low dose of Phenabarbitone as he didn't seem to be having these episodes when he was on this, unfortunately Phenabarb is only used as a quick fix and not as a long term solution. We are monitoring him very closely at the moment as we are anxious that this may spiral out of control again. We have been told that if they become more regular (4-5 an hr) we should take him to Poole hospital where they can up his meds and we really would be back where we started. At the moment he is having between 1-3 an hour, some more severe than others, they don't always hurt him.
So, we're back on the roller coaster for a while until we get this under control, we'll update you as and when we can.
Tuesday 12 June 2007
Ashley's Ailments!
Just another thing for us to deal with, Ashley (our eldest) was taken to hospital with a punctured lung today! Thankfully not the result of a fight but as a result of a bad chest infection. He had to have a chest drain and was allowed home but has to take it easy. He is absolutely fine now, just a bit tender and is back at work like the trooper he is. I dunno, there's always something to keep us on our toes!
Finally some answers...
Hiya, well it's been a roller coaster the past couple of weeks since we brought Patrick home. We are slowly settling into some sort of routine, everything revolves around Patrick at the moment, his medications have to be taken at certain times, the first of which is at 4am! Patrick is also difficult to feed, taking up to 2hrs sometimes which is a nightmare. Now we have had him home for a while we have started to see little things that aren't quite right and have had some concerns about his development. Thankfully we had an appointment today at the Child Development Centre in Poole so we were finally able to get some answers and some clarification as to how things may be long term.
Patrick was assessed by various specialists including speech and language, physio, and paediatric consultants who assessed him as a team. All together we were there for 1 1/2 hrs so it was quite in-depth and they were able to see him asleep, awake and feeding. Unfortunately their findings weren't the best we could have hoped for.
Basically we have now had it confirmed that Patrick will be significantly disabled. He has problems in all areas of development at the moment. Patrick showed little or no response to the Dr's trying to interact with him, when he did respond to anything it was a negative response, he got agitated when they tried to make him touch anything and really didn't like being played with. I know you could argue that this would be normal for a baby not to like strangers around him but most of the time it was like he didn't even know they were there. At the moment we are unsure if his sight and hearing have been affected, personally I think he can see and hear but his lack of response to everything makes it difficult to be sure. He has now been referred to specialists who can carry out further tests in both these areas. He is also being referred to a dietitian who can hopefully help with his feeding, at the moment he isn't getting the amount of milk he should be as he never keeps his last feed of the day down and also struggles with most of his other feeds. The dietitian can hopefully sort us out with some special milk which will give him the right amount of calories in less feeds so hopefully he wont be throwing up every evening. Another concern we had was that Patrick is very 'jittery'. Whenever he stretches or when pressure is applied to his feet, they shake, I call it the 'thumper rabbit effect'. We had been worried that this was a sign he was fitting or having a bad reaction to his meds but it's neither. Apparently Patrick has over active muscle tone and the shaking is a result of his brain not sending the right messages out. Although it's not great news to hear his brain isn't functioning correctly, it's also a relief to know it's not seizure activity and at the moment it's nothing we need to be anxious about as it is not dangerous to him. It may affect his mobility in the future but hopefully the physio he we be having will help. One thing that Patrick did seem to respond to was the sensory room. This is a darkened room with bubble lights, fibre optics and soft music, he was totally calm in this room and actually watched the bubbles with some interest. It was very helpful today to learn what he does and doesn't like as it will make it easier to care for him at home, at least we know now to take everything slow with Patrick, softly softly and gently.
So, in a nutshell Patrick is a very poorly bunny that will need lots of extra care. On one hand today has been very difficult, especially explaining all this to our bigger boys, on the other hand I feel quite relieved to have had some answers so that we can move on with some idea of what we're dealing with. It's gonna be life changing for all of us and I'm sure things won't be easy. although I am confident that if anyone can cope with Patricks needs then we can, especially as we are so lucky to have such fantastic support from our family and friends.
We have been told that we will have access to lots of services including special education needs and respite which again makes it clear just how poorly Patrick will be, most people have to fight for these services. We'll take any help going and somehow we'll find a new 'normality' and just get on with it.
One thing I would ask is that people don't start treating us all with 'kid gloves'. A friend who desperately needed a shoulder to cry on deliberately avoided talking about their problems today because they thought we had enough to deal with. Please don't treat us any differently, both myself and Martin have always been available to our friends and family and we always will be.
Patrick was assessed by various specialists including speech and language, physio, and paediatric consultants who assessed him as a team. All together we were there for 1 1/2 hrs so it was quite in-depth and they were able to see him asleep, awake and feeding. Unfortunately their findings weren't the best we could have hoped for.
Basically we have now had it confirmed that Patrick will be significantly disabled. He has problems in all areas of development at the moment. Patrick showed little or no response to the Dr's trying to interact with him, when he did respond to anything it was a negative response, he got agitated when they tried to make him touch anything and really didn't like being played with. I know you could argue that this would be normal for a baby not to like strangers around him but most of the time it was like he didn't even know they were there. At the moment we are unsure if his sight and hearing have been affected, personally I think he can see and hear but his lack of response to everything makes it difficult to be sure. He has now been referred to specialists who can carry out further tests in both these areas. He is also being referred to a dietitian who can hopefully help with his feeding, at the moment he isn't getting the amount of milk he should be as he never keeps his last feed of the day down and also struggles with most of his other feeds. The dietitian can hopefully sort us out with some special milk which will give him the right amount of calories in less feeds so hopefully he wont be throwing up every evening. Another concern we had was that Patrick is very 'jittery'. Whenever he stretches or when pressure is applied to his feet, they shake, I call it the 'thumper rabbit effect'. We had been worried that this was a sign he was fitting or having a bad reaction to his meds but it's neither. Apparently Patrick has over active muscle tone and the shaking is a result of his brain not sending the right messages out. Although it's not great news to hear his brain isn't functioning correctly, it's also a relief to know it's not seizure activity and at the moment it's nothing we need to be anxious about as it is not dangerous to him. It may affect his mobility in the future but hopefully the physio he we be having will help. One thing that Patrick did seem to respond to was the sensory room. This is a darkened room with bubble lights, fibre optics and soft music, he was totally calm in this room and actually watched the bubbles with some interest. It was very helpful today to learn what he does and doesn't like as it will make it easier to care for him at home, at least we know now to take everything slow with Patrick, softly softly and gently.
So, in a nutshell Patrick is a very poorly bunny that will need lots of extra care. On one hand today has been very difficult, especially explaining all this to our bigger boys, on the other hand I feel quite relieved to have had some answers so that we can move on with some idea of what we're dealing with. It's gonna be life changing for all of us and I'm sure things won't be easy. although I am confident that if anyone can cope with Patricks needs then we can, especially as we are so lucky to have such fantastic support from our family and friends.
We have been told that we will have access to lots of services including special education needs and respite which again makes it clear just how poorly Patrick will be, most people have to fight for these services. We'll take any help going and somehow we'll find a new 'normality' and just get on with it.
One thing I would ask is that people don't start treating us all with 'kid gloves'. A friend who desperately needed a shoulder to cry on deliberately avoided talking about their problems today because they thought we had enough to deal with. Please don't treat us any differently, both myself and Martin have always been available to our friends and family and we always will be.
Friday 1 June 2007
Patrick's Home!!
Hiya, been a while since I was able to update this blog as I've been stuck in the hospital for the past week but I am delighted to announce that Patrick was discharged from hospital yesterday. It would have been a day earlier but they wanted him to have another EEG before finally releasing him. Thankfully the EEG results showed no epileptic activity which is an improvement. There is still some abnormal 'slow waves' present but we're not sure what that means or how that might affect his development, if at all. We haven't been given a confirmed diagnosis or explanation for why this all started, all we have been told is that they are treating it as a vitamin B6 deficiency and will continue to do so unless he starts fitting again in which case they'll know it's not that. We have been given open access to Southampton hospital for 4 weeks and will have support from community paediatricians and physio-therapists. Patrick will have to attend a clinic in 4 weeks time and will basically be monitored as he develops. As he grows they may be able to do further tests that will help them confirm his diagnosis.
He has come such a long way in the last few weeks that it really is amazing to see him looking so well. He seems to be doing everything right at the moment, he focuses well and can follow an object as normal. He has started reaching for the toys on his play gym again, he smiles and is feeding well (still has to be positioned upright but is taking the right amount).
He is still on 6 different meds which is a bit of a nightmare for me as I have to prepare them all and give them at the right times, the pyradoxil is a particular pain as this has to be crushed and mixed and takes ages and he has to have that 3 times a day, the first one at 4am! Anyway, all this is a small price to pay for having him home.
We have become very paranoid parents but I don't think anyone could blame us for that, we are currently trying to find funds to purchase an 'all singing, all dancing' baby monitor that has a camera with audio so that we can watch his every move and look out for any signs of seizures from downstairs. At the moment I am putting him to bed in his cot next to me but can't leave his side, having this monitor will hopefully mean that I feel confident enough to leave him to it.
Anyway, I am off to have dinner with my family, something I have been missing a lot for the past few weeks. We will keep the blog going but won't be updating it daily, we'll update it as and when anything happens and will send e-mails out to let you know to check it.
Thanks for all your support and prayers, they have obviously been working. xx
He has come such a long way in the last few weeks that it really is amazing to see him looking so well. He seems to be doing everything right at the moment, he focuses well and can follow an object as normal. He has started reaching for the toys on his play gym again, he smiles and is feeding well (still has to be positioned upright but is taking the right amount).
He is still on 6 different meds which is a bit of a nightmare for me as I have to prepare them all and give them at the right times, the pyradoxil is a particular pain as this has to be crushed and mixed and takes ages and he has to have that 3 times a day, the first one at 4am! Anyway, all this is a small price to pay for having him home.
We have become very paranoid parents but I don't think anyone could blame us for that, we are currently trying to find funds to purchase an 'all singing, all dancing' baby monitor that has a camera with audio so that we can watch his every move and look out for any signs of seizures from downstairs. At the moment I am putting him to bed in his cot next to me but can't leave his side, having this monitor will hopefully mean that I feel confident enough to leave him to it.
Anyway, I am off to have dinner with my family, something I have been missing a lot for the past few weeks. We will keep the blog going but won't be updating it daily, we'll update it as and when anything happens and will send e-mails out to let you know to check it.
Thanks for all your support and prayers, they have obviously been working. xx
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