Sleep deprived EEG

What is this I hear you ask.

Well what happens is for a 4 year old, my son is 4 and a half he will have you know, you have to keep them up to midnight and then they get to go to sleep for four hours. After this you have to wake them up and they need to stay awake until the appointment. Our appointment was for 9am, with the test lasting for two hours. The reason they want him sleep deprived is to have him sleep while they perform the test.

Keeping him up was ok until he did fall asleep for about a minute and I had to pick him up make him walk around and give him sweets. We also had his favourite programme on, Top Gear and he played Race The Stig when he got really tired. When we got to midnight he fell asleep so fast, myself on the other hand I finally fell asleep at 1am but it was not a peaceful sleep as my son snores! (an ENT issue which I will update you about at a later date)

The alarm soon came and it was a struggle to wake my son. In the end I picked him up and made him walk until he was fully awake. I offered breakfast but he didn't want any, but he did accept a milkshake. I then put more Top Gear on to try to keep awake.

Then at 6.30am it was time to wake up my daughter and get her ready for school. Now that she was up it was easier to keep my son awake. We dropped her off with our neighbour who was taking her to school. It was now us in the car on the way to the hospital. This was the longest journey ever trying to keep him awake, we had the windows open and he was playing Race The Stig.

Once we got to hospital we had a wait before going in for the test but my son found some very noisy toys to play with. It was then time to go in, this was the part he didn't like very much. Electrodes were placed on his head and he was placed on a bed. By this point he really didn't want to stay and tried to get up, but we got him to stay and the lights were turned off and the Dr left.

After about 10 mins my son tried to get back up again and the Dr came back in. We decided that my son would be better to go to sleep on my lap. So in the most uncomfortable chair I have ever been in he was placed on my lap and the lights were turned off again and I tried rocking him to sleep. This time it worked and an hour and a half later I had dead arms, I didn't realise that he twitched so much while he slept. The doctor came back in and asked me to wake my son up, it took a little while but we got there in the end.

After all the wires were taken off we were allowed to go home. I should have the results in seven to ten days.
He was given a certificate for his bravery which he insisted on taking to school to show his friends.

Hello Moriarty

So we have a new kitten!

He came to live with us on Saturday after my.daughters birthday party. She thinks he is her present, well his is sort of. She gets to play with him and learn to look after him but he is my husbands and my responsibility.

Our other two cats are scared of him, they have gone into hiding. But our oldest cat Sushi will stay in the same room with him for a while as long as he doesn't jump on her tail. Today after dropping my children off at school I came back and let Moriarty out of the bathroom and Sushi smelled him and walked away so we have some progress.

Baskerville on the other hand is so scared of him he is hiding in my room and only comes out for food, litter tray and company of myself at night on the bed. But at least we haven't had any fighting. I am just going to let them get on with it and not force contact between them.

So after only two days it is going well.

Back to school

So today was the first day back at school.

It was my son's first day in reception class. I was not sure how I am feeling about it with so many things to sort out. I had to remember PE kits, book bags and water bottles. Well I forgot the water bottles but I'll not forget tomorrow, it is a good thing my children now get free school meals, one thing I can thank the government for.

We got to school the children were so happy to see their friends. There were new children in my son's class, he was not to sure about them yet.
Then it was off into class, there was a little tear in my eye. I think I'm going to miss not having to pick up my son at lunch time.

But the time at home went so quickly then it was time to go pick them up.

I waited outside my son's classroom and kept an eye on my daughter's classroom to see who would come out first. My daughter won, so I went to her and she gave me her book bag which had her first lot of reading homework.

Then my son's class was let out. He gave me his book bag which came with his first library book, a book on trucks as he couldn't find one about cars yet. He also came out with a letter with a picture of the class and what they had done. I couldn't see my son in the picture as he was hiding.

Now I have two tired children who have to do it all over again tomorrow.

Holiday time

Well it is the annual holiday time for us.

Day 1

I got up really early, I so could have stayed in bed. But I needed to do a few things. First thing was make some bread in the breadmaker, it is always nice to have fresh bread. Then I had to put the dishwasher on as I forgot to do it the night before. I checked I had packed everything we would need, we always forget something. With loads of time to kill before we needed to be on our way. I sorted out a note of the cat sitter and hoovered the house. This woke up my son who decided that special yogurt, corners you know the brand, was for breakfast, these needed to be used up so just this once he was allowed one.
My daughter on the other hand didn't want one.

Almost time to go and we had to get the car packed up. Our poor cat Baskerville had to be shut in the bathroom or he would have been out the front door so fast and it would have taken ages to get him in again. Once we had packed the kids in the car we did one final check of the house let Baskerville out of the bathroom and left the house. But we were not quite on our way yet. First I needed to drop off the keys to our cat sitter and give her all the information she needed.
Then we finally left.

We were travelling nicely on the motorway until we came to junction 28 of the M25 and straight into a massive traffic jam. It took more than half an hour to get to the Dartford crossing. When we finally got through we went to the A21 down to Hastings as we were going to stop off and get some shopping before our final destination of Rye Harbour. But there was more traffic jams on this road so we ended up taking the A268 to Rye instead and we would go shopping later. When we finally got to the cottage my mum, sister and brother were already there and we were joined about 20 minutes later by my sisters boyfriend who had come down on his bike.

After a short rest my sister, her boyfriend, my brother and my husband and myself went for a walk. We found a Martello Tower, the local shop, a nature reserve and two pubs. When we got back it was almost time for dinner so we decided to try one of the pubs out. I had fish and chips so did the husband and the kids had pizza and chips with salad. The children's meals came with a drink and ice cream for pudding.

When we got back the children had stories and when to bed. They are very happy as they have bunk beds here. But the rule is that my son is not allowed to go on the top just in case he faints.
This is a trial run to see if they are ready for bunk beds at home.

When the children were in bed everyone except my mum and kids went to get some shopping in Hastings. We would never have found it if we had come earlier in the day. Then it was back to the cottage and bed.

Day 2

After a bad night sleep, the bed was really hard. We got up and had a lovely fried breakfast made by my sister and mum with a little bit of help from me until I dropped the salt on the floor.

After breakfast we went into Rye as it was quite a rainy day due to ex hurricane Bethera. It was pouring with rain so we ducked into the Information Centre which combined a old penny arcade with automatons which the children loved.
There was also a model of the town with a full history show. When we came out the rain had stopped. So we went to explore the town.

After 4 hours we came back to the cottage for a rest before going for a walk in the nature reserve down the road. The children really enjoyed themselves and we went into a hide to watch birds. Many hours were spent enjoying the birds.

Day 3

We were up early and were going to go to the steam railway but it was pouring with rain on and off so we decided to go to Eastbourne and go to some indoor activities. Once we got going with us in the car and my sisters boyfriend, Uncle E following on on his motor bike.
Poor Uncle E got caught in every shower the weather could throw at us.
But when we got there all the rain had stopped but it was very windy.

The first place we visited was The Redoubt which the children loved see pics below. We then took a walk along the beach and saw the damage done in the recent fire on the pier. It looks like it will be a long time before it will be open again for business.

By this time the children were getting very hungry so we did what you do when you go to the beach, you get fish and chips. The fish was very yummy and so we're the chips. We then went to a "How we lived then" Museum of Shops. My daughter and husband did a quiz as they went round. They got 100%. After we had finished we went back to the beach so the children could play.

The best game they came up with was getting a stone throwing it into the sea then running away from the waves. The waves almost won a few times. We also had ice cream which was a highlight for the children.

It was a better trip back to the cottage as the weather was sunny. The only thing was the traffic but we were travelling at rush hour along the coast road.

Day 4

We woke up after a very very loud thunderstorm. It was still raining, well showers, but today was the Steam Train trip and my sisters boyfriends last day with us. We got to the Kent and East Sussex Railway station in time for the first train of the morning. I took a photo of my children and husband by our train. We got on a carriage and we had a compart all to ourselves. The train went all the way to Bodiam Castle. The children really enjoyed themselves travelling on the train. After we got off at Bodiam we got some local homemade fudge, the bit that I had was very yummy.

Bodiam Castle is a National Trust property. The day we went they had people showing you how they made coins, pots and did woodwork in times gone by. Both my children had a go at minting a coin. My daughter almost dropped the hammer.

Both my children wanted to go up the towers, they have no fear. So they went up them with Uncle M and my husband. They were joined by Uncle E, my sisters boyfriend, up the second tower. By this time the children were getting very hungry and we thought we would go to the local pub. But upon sitting down found the main meals were over £13 and there was no childrens menu. So we promptly left and ended up in the café in the grounds of the castle. This was a much cheaper option and a burger was only £6.50 half the price of the pub.
Then it was time to come back on the train.

My daughter fell asleep on the train home and so did her daddy. When we got back to the station we went into the museum and while we were almost at the end a bottle of pop that was in my brothers rucksack went bang and shot the top off the bottle. That gave us a fright and the person who took our money came running in asking if everything was ok. I think he was relieved that it wasn't one of the exhibits.

After we left and went back to the car it was time to say goodbye to Uncle E, he had work to go back home too. He got on his bike and was gone with a wave goodbye.

We went back to our cottage for dinner and that was the end of day four.

Day 5

Today we woke up to sun shine and it is Battle day. As we are in 1066 country we had to go to Battle Abbey and town. If you are going get there early as the English Heritage car park gets full very quickly. We had a really good time and the children let off a lot of steam. When we had been round the abbey it was time for lunch and today it was Italian. We had a really lovely meal and pudding was amazing and so so yummy. With full bellies we left Battle and headed back to Rye for a look round while it wasn't raining. But low and behold when we got there it started drizzling, it didn't last long though.
Then it was back to the cottage and dinner of chip butty and a night in of watching Great British Bake Off.

Day 6

Up early again this morning and to sunshine which was a bit of a surprise, it was supposed to be raining all day.
Due to this we were going to The Observatory Science Centre at Herstmonceux. We really enjoyed this place as the children could try out all the experiments and there was a science show where they made lots of bangs, this the children enjoyed very much.

After a very long time we got hungry and stopped of at a small town for a quick bite for lunch. Then it was on to Pevency castle for the afternoon. While we were there the only two flying Lancaster Bombers flew passed on their way to Eastbourne.

Day 7

Is the last full day of our holiday as day 8 is going home day. We went into Hastings to the shipwreck museum and the fisherman museum. Both of these are free entry and really informative. The fisherman museum is housed in St Nicholas church which was the church of the fisherman of Hastings. We had a packed lunch on the beach with the seagulls watching us. Then the children, my sister, husband and myself went for a little paddle. Well if you're on the beach it is a thing you must do.

After our car park time was up we came back to Rye to pick up some biscuits for my husbands work, he always has to take something back.

As it was our last night we went out for dinner. We found a lovely pub called The New Inn Winchelsea, why is it always that you find a hidden gem of a pub on the last day?

Day 8

Time to leave and come home. The morning was spent finishing the packing and putting everything we had bought into the car ready for the journey home. We did come back with an extra though, one Uncle M came back with us to stay for a few days.

So that's it our holiday over for this year.

My poorly boy part 6

Well today we went back to The Royal Brompton.

We got there early and were the first people there, we even beat my son's consultant. It was a while before we would be called in so my son played in the waiting room. At this point I should say thanks to @bromptonsupport for the many toys that are there for the children to play with.

We were then called in to see Dr Till. She showed me the results of my son's latest heart monitor, they were all normal, which they would be as he didn't faint. So we spoke about the results of the previous heart monitor, which picked up a fast heart rate when he fainted. But she could not give me a reason why.

The plan is now to have my son seen by a proper neurologist, not a pediatric doctor with an interest, Dr Tills words, and have another EEG but this time a sleep deprived one.

So the conclusion is that this is either neurological or blood pressure related. If it is blood pressure my son can't have a tilt table test until he is 7. Which means we may not have a diagnosis before he is 7.

We also spoke about how my son would cope at full time school, which starts in September. Dr Till sent us to see the Paediatric Electrophysiology Clinical Nurse Specialist who is going to write to my son's school with a care plan for him so the school will know what to do when he faints.

Now I just have to wait for the neurologist appointment to come through. But we at least we have ruled out my condition as a cause. He still might need a loop recorder but while he might need to have a brain scan Dr Till thought it was best not to put one in.

Well that's it for now the next Brompton appointment is in 6 months time.

An interview with my children 2014

I did this interview last year and thought it would be good to see what has changed. My children are now 5 and 4 years old.

So here goes...

What is the meaning of life?

S - to eat.
D - I don't know.

What do you want to be when you grow up?

S - Rally Car Driver
D - Horse Racer

What brings you the most happiness?

S - Buying toy cars
D - Playing with my three boyfriends

When do you feel most loved?

S - with daddy when he reads stories
D - when I am with mummy and daddy

What are you afraid of?

S - Monsters and Mummy leaving me
D - Tarantula spiders

If you had one wish, what would it be?

S - I want many Aston Martin Cars
D - to ride a flying unicorn

What is the funniest word?

S - Plop
D - Poo

What is the hardest/easiest thing to do?

S - work like daddy/drive a rally car
D - walk and hop at the same time/crawl

What is the best/worst thing in the world?

S - really good cars/worst cars (lemons, as in Cars 2)
D - kitty cat doctor game/brothers poo as it stinks

What makes you mad?

S - Baskerville biting me
D - when my brother farts!

What is the meaning of love?

S - Mummy I love you x
D - playing with JH my best boyfriend

If you had all the money in the world what would you do with it?

S - Buy a rally car, a normal car, a porshe and a DB9
D - Buy 1,000 kittens

So thats it and we have found out that my son still likes his cars and my little girl has found boys!!!
And toilet humor!

Lister Hospital is rubbish

Well, after all the preparation getting my son ready for his ENT operation (grommets inserted and adenoids removed) and attending his pre-op appointment, where we told that everything was in order, the Lister Hospital in Stevenage, Hertfordshire, decided to cancel it indefinitely!

My husband and I were fuming. The Lister had asked for written confirmation, from the Royal Brompton hospital, that they were happy for my son to be put under general anaesthetic. We obtained this and I handed the letter to the nurse at his pre-op appointment.
The letter confirmed that my son's ECG results were all normal and that his heart was structurally sound - but this was not good enough for the Lister.

The following day I received a phone call from the nurse, to say that the operation could not go ahead until the Royal Brompton had diagnosed my son's condition. This could take months, if not years! Our consultant at the Royal Brompton had warned us that the anaesthetists at the Lister might not be sufficiently experienced to handle my son's case, but I had naively assumed that a more qualified anaesthetist would be brought in if that was the case. But no, they flatly refused to operate as it was 'in his best interests'.

I pointed out that my son needs the operation urgently as he is falling behind at school, due to hearing loss, and asked if they would still refuse to put him under general anaesthetic if he was hit by a car and needed surgery. The nurse said that they would, of course, operate under those circumstances as that would be an emergency, rather than elective surgery.

She then asked why the Royal Brompton hospital couldn't do my son's ENT operation. I was somewhat taken aback and pointed out that the Royal Brompton is a specialist hospital that deals with heart conditions, not a general hospital.

She then instructed me to contact my GP to get my son referred to the ENT hospital in London - which is where I had originally asked for him to be referred but my GP had insisted on referring him to the Lister!

Okay, fine that's what we'll do... or will we?

Forty-five minutes later I receive another phone call from the same nurse, this time using a mobile phone, to say that there would be no referral as the Lister consultant did not think that any consultants at the ENT hospital in London would operate on my son either.

Oh, really?

The following day, we sent an email to one of those consultants in London and he said that both he and his anaesthetist would be happy to perform my son's operation. I have therefore instructed (not asked) my GP to refer my son to him as soon as possible.

The Lister will not touch my son with a barge-pole and the feeling is mutual.