28th April 2012

Just been discussing Aydan's sleeping problems with a few lovely ladies on a forum I go on, as he wakes roughly every hour and a half through the night, drinks about 8ozs of milk, then goes back to sleep again! This is making a very tired mommy!

One of the ladies suggested that it might be apart of his epilepsy/TSC, and it had never occurred to me before, but I think she might be right!!

I did a bit of research and it seems that 90% of TSC patients have some kind if sleep disorder, something to do with them not going through the complete sleep cycle and the epilepsy waking them up.

It doesn't really say a lot about what they can do for them, some doctors will occasionally allow them to have sleeping tablets so that the parents can get some rest! But to be honest this horrifies me slightly! I don't want to give my baby drugs just so I can get a bit more sleep! Plus the sleeping pattern doesn't seem to affect him much as he's never really grumpy!!!

Will just have to accept the fact that I have a baby that doesn't sleep much, and try and work it with daddy so we can take shifts, and catch up on sleep that way.

Poor little man! But I expect that more things will start coming out of the woodwork as he gets older, and thankfully this doesn't seem to be an issue for Aydan, just a tired mommy! Lol

Seeing that beautiful smile every morning makes all the sleepless nights worth while :0)

24st April 2012

Today I have finally got around to sorting out a JustGiving fundraising page 

So far I have made £93.00 which is going to the Ronald McDonald House Charities at Alder Hey 

(Charity Registration No. 1008765)

"Ronald McDonald House at Alder Hey Children’s Hospital provides accommodation totally free of charge for the parents and carers of the most critically ill children who are in patients in Alder Hey Hospital. The House has been open for 16 years, more than 15,000 families have been accommodated in our 70 family rooms. The House is full to bursting every night with a waiting list of 20 or more families. In 2010 the Charity is hoping to open 15 family apartments for long stay families ( 6 months or more ). RMH at Alder Hey is the biggest RMH in Europe with running costs of £400k per year, the estimated cost for the new development is in the region of £1.5 million. There has never been a better time to support the ‘’ House that love built’’ "

I have been knitting some beautiful items, which people have been buying off me, and I have some lovely projects still to come, plus some very generous donations off friends and family.

If you would like to donate towards my cause then please click on the link below

http://www.justgiving.com/AydanBranOakes

 Without the RMCH it would have made life very difficult for us because of the distance travelling to see him, and having to find people to look after our other children. A worry which you don't need while your child is in hospital! Their onsite 'home from home' made it possible for us to all stay together.

20th April 2012

Today we have had another letter from Alder Hey

This one is regarding an appointment for ophthalmology.

I've never heard of that before but apparently it's something to do with the eyes.

The letter says that he will need eye drops to widen his pupils so that they can see the back of his eyes, and I am guessing that they will be checking for tubers as well as any other kind of eye sight problem.

That's not till the 6th July though so we have a bit of a wait!!!

I thought I would also add another video!

This is one of Aydan in his baby swing and he has learnt how to make it swing all by himself!

(He is strapped in by the way, although it doesn't look like he is!!)

19th April 2012

I've got to share this video

Basically Aydan has found his reflection on one of his teddies and his reaction is sooo adorable!!

WARNING!! MAY MAKE YOU LAUGH!! ;0)

14th April 2012

Just received a letter to say that Aydan's Kidney Ultrasound was normal.

This is a huge relief as I've read there can be a couple of problems involving the kidney's in TSC patients.

He will still have to have regular Kidney Ultrasounds to monitor them.

I've copied and pasted an abstract from a website in case anyone is interested in reading more about this concern taken from HERE

"Kidney problems such as cysts and angiomyolipomas occur in an estimated 70 to 80 percent of individuals with TSC, usually occurring between ages 15 and 30. Cysts are usually small, appear in limited numbers, and cause no serious problems. Approximately 2 percent of individuals with TSC develop large numbers of cysts in a pattern similar to polycystic kidney disease during childhood. In these cases, kidney function is compromised and kidney failure occurs. In rare instances, the cysts may bleed, leading to blood loss and anemia.

Angiomyolipomas-benign growths consisting of fatty tissue and muscle cells-are the most common kidney lesions in TSC. These growths are seen in the majority ofindividuals with TSC, but are also found in about one of every 300 people without TSC. Angiomyolipomas caused by TSC are usually found in both kidneys and in most cases they produce no symptoms. However, they can sometimes grow so large that they cause pain or kidney failure. Bleeding from angiomyolipomas may also occur, causing both pain and weakness. If severe bleeding does not stop naturally, there may severe blood loss, resulting in profound anemia and a life-threatening drop in blood pressure, warranting urgent medical attention.

Other rare kidney problems include renal cell carcinoma, developing from an angiomyolipoma, and oncocytomas, benign tumors unique to individuals with TSC."

12th April 2012

Aydan has been for a third EEG at Alder Hey today

They didn't manage to get him to go sleep so hopefully they'll get the results the need! 

I will keep you posted on the results :0)

10th April 2012

When your child is diagnosed with something like this, every milestone becomes a massive achievement! Particularly as you're warned that they may regress at any moment!

I am also going to post all the milestones that he reaches, because I'm a very proud mommy, and there may come a day when he can't do these simple things again, and I'd like to be able to remember them!

Today is a picture of Aydan finding his feet :0)

5th April 2012

Today Aydan had to go and visit his new consultant and Leighton Hospital.

The consultant was really pleased with how well he has been doing with his medication, and has given us a special letter which means that if Aydan has a couple of seizures, or a really bad seizure that we can take him straight to the Paed ward rather than go through the doctors or A&E as they probably wouldn't know what to do with his condition anyway!

We discussed briefly a few things that may happen in the future, but for now it's playing the waiting game.

We are still awaiting the results from his genetic blood test, but that could be ages yet.

Aydan typically had a seizure around 4pm, but as it was only a very mild one and just the one cluster then we didn't worry about it! It's if he gets a couple of clusters in a few days that we have to take him back to the ward to review his medication.

As he is doing really well at the moment I am keeping everything crossed that he remains to do so well!

27th March 2012

Today we were given the all clear to return home again, you cannot believe the relief of having to go home after spending nearly 2 weeks in hospital!!

Although we did get to spend some time in the sensory room before we left! mummy had been dying to go in here all week!

This was Aydan's reaction to being back home!! He was so happy and excited that his legs were bouncing up and down in his chair for over 2 hours!!!

Aydan did have a seizure later that night, but I think it was because he had woken from a deep sleep. But considering he hasn't really had any for days now the medicine seems to be working really well so far :0)

25th March 2012

Today Aydan was well enough to go for his heart ultrasound scan.

This revealed one non malignant tumour, but the consultant was confident that as he grew bigger that this would disappear, they want to do a repeat ultrasound on him again in a few months time to monitor it.

We were told we could go home today, be we wanted to make sure that he was clear from his Rotavirus first so that my other children didn't pick it up, he was still having loose stools and we were told that you can have loose stools for up to 8 days afterwards!!

23rd/24th March 2012

Aydan started his medication today

They have put him on 2msl Sabril (Vigabatrin) twice a day

Nothing happened for these couple of days, it was just a case of him recovering from the nasty bug he had and getting used to his medication

He was starting to look like his old self already!! :0)

22nd March 2012

Today was one of those days I wish I could erase out of my memory, but sadly most of it is burned in and I'll probably never forget even when I am old and senile!

I'd had an awful night with him, his heart rate kept going up to 200 beats per minute (BPM) and he had a raging temperature. He had a monitor stuck on his toe and it kept triggering off an alarm (which to be honest nearly got thrown up the ward!!) He'd also had diarrhoea a number of times in the night and I suspected he was feeling rough from his anaesthesia yesterday.

None of the night staff seemed concerned though, and none of them seemed to do anything about it. (I found out later on that day that they had rang the oncall doctor but I never knew what had been said!)

As soon as Aydan's named morning nurse came on shift, she took one look at him and carted him into a side room. She said he looked really poorly and wanted to send off a stool sample for testing as she thought it sounded like he'd picked up a sickness bug!!

An hour later and some calpol, he was trying to sit up again and was giggling away at CBeebies on the tele, and as soon as daddy arrived I rushed off for a shower.

Not long after being back at the Ronald McDonald house I had a phone call off daddy to say that the consultant had been in and they had the results of his MRI scan, but because I wasn't there he would call back at 1pm after he'd been to a meeting. I was also told that they were doing another EEG on him and that they were going to keep it on him for a while in hopes that he would sleep.

After my shower I nipped to the shop to get some sandwiches for everyone, I wasn't really hungry, but thought I'd best eat something.

As I arrived back in the room my heart did a flip flop, the nurse told me that he'd taken a turn for the worse while I was gone and his arms and legs had turned purple and floppy and he wasn't responding. The nurse had quickly put a drip up and rushed a bag of fluids down him as she suspected that his sickness and diarrhoea had caused him to become severely dehydrated. He was halfway through his second bag of fluids.

He looked like death

I've worked in a couple of nursing homes, I know exactly what death looks like. I reached out to hold his hand and it was cold and clammy. 

I told him that he was a strong little man and that he was going to fight this bug, that he wasn't allowed to leave us just yet. I cant remember what else I talked to him about, but I just kept talking, it wasn't long after but colour started returning to him again and he started to stir. I couldn't describe the relief I felt.

This was him just as the colour was starting to return to him

(it makes me sad to look at this photo)

It wasn't long until they came to take the electrodes off him and whisked off with the machines to look at the results.

It was around that time that the consultant also reappeared.

It was confirmed, Aydan has Tuberous Sclerosis Complex, they had found several large non-malignant tumours in his brain, and he guessed there are probably thousands of tiny little ones.

He told me that it was a genetic condition and that because of his age we wouldn't know how severe it would be, but to expect a life of learning difficulties, physio, constant tests, autism, and general health problems. 

But I haven't given up hope, he looks and acts just like any other boy would his age, so for now his prognosis looks good.

They told me that they were waiting for the results of his latest EEG to confirm what type of epilepsy he has, and were hoping to start him on the medication for it right away.

Not long after, another consultant came in to tell me that the EEG had picked up Hypsarrhythmia (Chaotic Brain Waves) and that the seizures he was having were known as spasms, also know as infantile spasms or West's Syndrome.

Aydan slowly recovered throughout the day and started to come around. 

A nurse came in to tell us that he had picked up the bug Rotavirus, so at least we know what had caused him to become so poorly so quickly.

21st March 2012

We were told very early in the morning that Aydan would be going down for his MRI, so we weren't allowed to give him milk or food from a certain time as he would be having a general anaesthetic. Thankfully he was asleep for most of this time as I wouldn't have liked to hear him scream the place down wanting some milk!!!

This is him waiting to go for his MRI

I went with him as he was carted off on this hospital bed, he kept trying to sit up to see what was going on and he kept smiling at everyone around him! He managed to get hold of his hospital notes at one point!!

We went into this room, which was outside the room where they would do his MRI, and I met the anaethetist. He shook my hand and apologised to me as he said that I wouldn't like to see what was about to happen, but that it needed to be done. They asked me to hold his hands. Another nurse held his feet, and then the anaesthetist put a mask over his face, containing the gas that would make him go to sleep, and pinned his head down to the bed. His poor little arms and legs were trying desperately to move and get the mask off, but it wasn't long before he went to sleep. I gave him a kiss before I was carted off back to the ward.

That half an hour felt like the longest half an hour of my life!!

He was still asleep when I went back to get him

They had done some blood tests on him while he was sleeping, so as not to cause him any distress, so when I saw him his little hands were all bandaged up and he had a cannula under one of the bandages.

This was him when he came back, he looked like a right sorry sight the poor thing!

He spent most of the afternoon snoozing, and had a bit of milk here and there, but wasn't really interested in it, but having had anaesthesia myself a few months beforehand I could completely understand.

Later in the afternoon daddy went with him for a Renal/kidney ultrasound. Apparently they were looking for cysts which can appear in the kidneys when people have Tuberous Sclerosis. Apparently he had none which I was told was a very good sign.

Around 11pm Aydan projectile vomited everywhere, it was horrible and he managed to cover mummy and a nurse in it!! a quick clothes change later and we were all clean again! I could have done with a shower really but didn't want to leave him on his own, so just made do with a clothes change. 

20th March 2012

This morning, after feeling like waiting around for days, things began to move really quickly!!!

We were told that Aydan was down for an emergency MRI (Magnetic Resonance Imaging) and a Kidney/Renal Ultrasound, and that he would be having an EEG (Electroencephalography) we also had a UV light test, which is basically where they get a UV light and hold it over his skin to look for white patches, also known as Ovoid or ash leaf-shaped white macules, apparently 3 or more white spots can indicate Tuberous Sclerosis Complex (TSC)

It turns out that Aydan's skin had lots of these white patches, I have added a picture below, but it's not as easy to see them without a UV light!

We were told to prepare for the diagnosis of Tuberous Sclerosis Complex but that we wouldn't know the true diagnosis until they'd run some other tests.

Just before lunch Aydan was called to have his EEG, he was ever so good sitting there while they stuck all those wires to his head, and didn't even try to pull any off which I thought he would do! 

We got the results back straight away for the EEG and it was normal, they said they would need to do another one while he was sleeping as your brain waves are different while you are sleeping.

Nothing happened for the rest of the day, it was just more waiting around for the emergency scans.

19th March 2012

Today was a day of waiting around....

Around 10am we were told that we were going to be transferred to the Neuroscience ward at Alder Hey Children's hospital, where Aydan would have an EEG (Electroencephalography) and an MRI (Magnetic resonance imaging) 

By the time we got discharged from Leighton Hospital it was 4pm, and by the time we'd managed to nip home and get essentials and then get to Alder Hey it was about 6pm

Aydan 'Making some new friends' at Leighton Hospital

Aydan, bored in his 'cage'

Aydan had one of his seizures in the car on the way there so I managed to capture a tiny part of it on my phone! This proved to be very useful for the Doctors. (see below)

18th March 2012

Today was mothers day, and as my ex had my eldest 3 children, Aydan, Aydan's daddy, and myself went to my mum's for dinner.

Aydan was perfectly fine, he'd eaten all of his dinner, we'd gone for a walk around a shop, and then we'd called to see my nana and grandad, where he was sat happily playing on the floor.

It took us a couple of minutes to realise, but every time he sat up he kept falling back over again. He's a very active baby anyway, which is why we never noticed at first, always on the move. 

He was doing those really weird jerky movements again.

Aydan's daddy scooped him up and we watched him doing it.

It's really unusual because it's hard to call them a seizure because he's completely coherent in between the jerking movements, whatever was happening to him didn't seem to bother him, I suppose it's a bit like having Tourettes and having those 'tics' where your body does stuff of its own accord. So trying not to scare my nana and grandad, we pretended that everything was fine, and while they'd nipped out of the room I mentioned that we'd run him up to the out of hours doctors when we'd left.

Aydan slept for a short while, and upon waking he started to have another bout of these weird jerking movements. We said our goodbyes and headed straight for our out of hours Doctors, which is in the same place as the A&E department.

The woman behind the desk told us that we'd need to be seen by someone from A&E, so we went and booked in there, where we proceeded to wait for what felt like hours!!!

Eventually we were admitted to the children's ward where we sat waiting for someone to come and see us.

2am in the morning (yeah, we were really waiting for that long!!) a consultant came to talk to us, as just as she started asking us the questions which we'd been asked over and over again since 6pm, Aydan started to  do his jerking movements again.

I was actually relieved, I know that sounds awful to say, wishing your son to have one of his 'seizures' or whatever you want to call them, but I knew that if they didn't see what was happening that we would probably get brushed under the carpet and told to come back if he had another.

The consultant went to get another consultant, and the pair of them stood and observed Aydan while he was having them.

Also by another coincidence, Aydan happened to be just in his nappy as he had just been weighed.

One of the consultants asked me about a white patch of skin on his back. I had never seen this white patch of skin before, so knew it wasn't a birthmark, but it just looked like when you've been touching your own skin for a while and all the blood has drained from it.

The consultants said then that Aydan would be in hospital for a few days until they had figured out what was happening with him.

Aydan's daddy went home for the night and I prepared for a night of no sleep again!

16th March 2012

I was on the phone to the Doctors first thing this morning. It's like a battle to get an appointment first. You call, it's busy, you hang up and hit redial right away! They have a limited amount of appointments to give out each morning, and if you're not quick enough you end up having to wait to do the same again at dinner time, or you make an actual appointment, which can then be a week or even two weeks before you get to see somebody. I wasn't taking my chances!!

I was over the moon when they said Aydan had an appointment with my favourite Doctor!

When we went in to see him, he made a point of saying hello to each one of my children before saying hello to me, I liked that, most doctors these days just seem to grunt at you and then throw you out a few minutes later! it must be a completely unrewarding, boring, job.

After a thorough examination, the Doctor came to the conclusion that it was most likely to be his ears. It turned out that Aydan had got an ear infection and that what was probably happening was that he was hearing those horrible popping noises you get when your ears start to clear, and that noise was probably what was scaring my little man so much!

I did ask if he thought it was a seizure, but he did say that even if it was, that a one off didn't necessarily  mean anything and that children can sometimes get one off seizures anyway.

I was happy with this diagnosis, having had numerous ear infections in the past I know only too well how nasty they can be!!

15th March 2012

It's funny, yet also really quite sad, how fast you feel your life can change and your whole world can feel upside down in only a few minutes.

That's what happened to us....

Today was the same as any other day, my children had got up, dressed, had their breakfast, played, had their dinner, we'd been out for the afternoon, come home and decided to watch a film, I'd nipped into the kitchen to switch the oven on and contemplate what we were having for tea. Perfectly normal day!

Aydan, my 10 month old, started to cry, but it wasn't a normal cry, it was a frightened cry. He'd been asleep in his bouncer while his big brothers and sisters were sat with him, watching the film. My first initial thought was that maybe he'd woken and got confused about where he was, or maybe his slightly older sister had tripped and fallen on him.... again.....

As I came closer I saw his whole body flinch, his arms flew up in front of his face and he looked absolutely terrified! If I didn't know any better I would have thought that somebody had just gone to throw something at him. Whatever it was he was scared!

I picked him up and gave him a cuddle and made the usual shushing sounds and swaying gently.

He did it again....

and then again....

in fact he did it roughly every 30 seconds and it lasted for about 10 minutes.

Just a quick kind of flinch, only lasted about a second, his hands would fly up to his face, he would duck his head down, and his knees would try to come up to his chest. The crying stopped really quickly once I was cuddling him, but again this flinching kept going on, but it did eventually slow down and become less violent.

I had gathered then at this point that what I had just seen was some kind of seizure, but never having really seen any before, and assuming that I was just being an overly paranoid mum, I rang NHS direct and spoke to a lovely Doctor on there.

I told him that Aydan had been grumpy for a couple of weeks now, and that he'd been having teething pains and a slight fever.

We came to the conclusion that it was probably because of his teeth and a fever, he was acting normal again now, but I should keep a close eye on him and take him the doctors first thing in the morning, or sooner if it happened again.

I have to say that I definitely kept a close eye on him that night!!!

Here is a picture of my happy little man!