Kaiden and the Neurosurgeon

Today was the day to see the Neurosurgeon. We took Kaiden to the Southern General Hospital for his appointment with Miss Jennifer Brown FRCS. We had heard from staff at the Southern that she did not have a good bedside manor, but that could not be further from the truth. She is just a strait talker, and by the time you get to see her, that is really what you need.
Figure: The Boy – Kaiden is a happy boy who is frustrated at not walking
She does not want to do a Shunt as she considers that the old way of doing things, but instead prefers to do endoscopic neurosurgery to go in through the high side of Kaiden’s head and make an incision in the top of the cyst. She will then push the endoscope into the cyst and make an incision at the bottom creating a channel for the fluid to escape.
Figure: The Arachnoid Cyst – The cyst is blocking fluid like a plug
If that does not work, which she thinks it will, she would do a second surgery to put in a shunt. Shunts tend to have a much greater chance of infection and rejection as you would have a little tube going from your brain al the way to your stomach. A Shunt can also be blocked and contains a little valve that can brake.
She answered all of the questions we put to her with compassion and with no nonsense that we can all associate with ignorance and uncertainty.
There is a 1% chance of major complications and by that Jennifer talked of cranial bleeds of which she has only seen 2 in 25 years of neurosurgery. There is also a 10% chance of minor complications but they are all manageable.
Figure: The Hydrocephalus - Fluid build up behind the cyst
Jenifer can’t give any guarantees that Kaiden’s gross motor skill will improve once the procedure has been completed as damage to those sections of his brain may already have been done, but she is confident based on previous cases that the outlook is good. At worst there should be no further exacerbation of the hydrocephalus and thus no more damage incurred. As Kaiden is so young it is difficult to tell what is late development due to damage and what is late development due to…well..being a lazy boy. In saying that she is very certain that being over six months behind in his gross motor skills is due to the hydrocephalus and the cyst.
Figure: The Pirate – At Kaiden’s first birthday he was a pirate
Baring any emergencies she plans to do the operation within 4 weeks which is fantastic news for anxious parents wanting things to start moving and but also fills us with fear and hope for the outcome.

Kaiden and the secret apointment

What we were not expecting when we arrived at the hospital for an appointment to take blood was an overnight stay!image
The Southbank clinic had arranged for Kaiden’s bloods to be taken to test for a number of things that could be affecting his walking and gross motor skills. They mentioned some enzymes and a chromosome check. The endocrinologist  also wanted to do checks for hormone levels because of the damage to his pituitary gland. He said that the would make sure that the appointments were combined.
This appointment was made over the phone so when we arrived at Yorkhill today for our appointment we went to Ward 1C as instructed. The nurse who met us said “You should be in 7A!”. Well ok, that could be an easy mistake, one we could have made ourselves. “We have a room ready for you”. Hmmm, what?
Turns out the the appointment for the water deprivation test the endocrinologist had discussed was made for today, but no one bothered to notify us! Its extremely lucky we had an appointment already that day. No wonder 30% of appointments are no-shows, I bet at least half of those are due to a lack of communication.
We did not want to re-arrange the appointment as we are seeing the neurosurgeon next week and we want as many results as possible for her when we meet. The less roadblocks the better.
We were at the hospital for a 2pm blood taking and now need to change plans for an overnight at 4pm. Not enough time to go home, so off to Asda to buy jammies for the wee man and wife along with the usual trappings of an overnight stay at the hospital.
The new plan is for Kaiden to stay overnight and to fast from 4am to get bloods done at 9am. Hopefully he will not wake up after 4am for a drink, otherwise there might be a screaming match. He needed to get a drip attached so they could take the bloods easily multiple times and the nurses would also monitor his fluid intake and output.
There were two very nice doctors including one we had seen before on a visit to Yorkhill with Kaiden at 3am. Jadie commented that the other looked too young to be a doctor, but that is just what happens when you get older…everyone else looks younger. They tried to get the drip into Kaiden’s arm first and I have never heard Kaiden scream more than he did then. It was not the drip, it was having his arms immobilised that terrified him the most. This was very distressing for us as parents and Jadie especially as she insisted on holding him.
With Kaiden not really using his legs and his arms being his main mode of expression I can understand why he was so distraught.
Although they inserted the drip it stubbornly refused to  dispense blood and they had to remove it. We were dreading another attempt, but they decided to go for the legs. This proved to be the best decision and Kaiden only cried when they were actually inserting the needle, before and after he was giggling and laughing. He pretty much ignored the vice grip on his legs and let them get on with it.
He did however put on a rather strange expressions when a nurse came in after his bath and attached a bag to his winkle (Jadie friendly word) so they could measure output.
I think that expression is surprise, he is too young for anything else!
Kaiden will be discharged tomorrow so I will be picking him and his mum up early afternoon.

Kaiden and the wonky eyes #2

It’s day 2 of the strange eye saga. We took the advice of the on call doctor, but only after my father had verified what he said.
It turns out that my grandmother was seeing the Ophthalmologist yesterday as well and here eyes were both still dilated after 5 hours.
Kaiden’s eyes have not gone back to normal this morning so I called the hospital and was told that there were only optometrists in and the real doctors get in at 9:30am.
What is this, part-timers-r-us at the NHS? 9:30-5? I wish…That's an hour and a half for seeing patents. They could see three more patents per doctor per day.
Anyway, I was put through to a optometrist and she said that children, and especially children with light eyes can take longer to get over the eye drops. But even she said “Next day”, which it currently is. Apparently there is a clinic in the afternoon, and if we are still worried to call back then.
Figure: This is with a flash going off! At least the right pupil is now working.
After doing a little work, I work form home, I had to look after the kids for 5 minutes while Jadie went to the shop across the road. Kaiden was outside, and it looks like his eyes are back to normal.
Remember we were told nothing of this possibility at the hospital, so we have had unnecessarily panicked parents for 24 hours because of a lack of transparency between the hospital and those responsible for the patient.
Panic over…

Kaiden and the wonky eyes

Its now dinner time and we have noticed something strange about Kaiden’s eyes. Can you see what it is?
Figure: One eye is dilated
We checked both his eyes with a weak light and neither of them react to it at all.
We were not told that this would happen at the hospital, but they did put drops in so they could look at the back of his eyes. The drops we were told was “die” so they could see into his eyes, but a quick Google-Fu about ophthalmologists and eye drops implies that it might be apathetic. If we had been told it was antithetic I would have had a couple of questions:
  • What are the side effects?
  • When will it ware off? (we have all been to the dentist)
We phoned the hospital, but surprise-surprise everyone in that department has gone home. The on-call doctor dismissed our concerns and said that it should not be a problem and to bring him in in the morning if he is still presenting the same symptoms.
I am not so sure, it has been over 4 hours since his appointment and we have only just noticed this. Now, it could be we were just not looking for it and it has been like that for 4 hours, but I think it is something we would have noticed.
If they were antithetic drops then I am not worried and would leave it till tomorrow, but if they were not antithetic and were just die I would be worried.
I am currently debating on wither to take him down to Yorkhill A&E…
Talks about apathetic drops:
If you have one eye bigger than the other:

Kaiden and the Ophthalmologist

We took Kaiden to the Ophthalmologist (Professor Dutton’s surgery) at Yorkhill Children's Hospital. When we got there Kaiden was very brave an was happy to get checked out and have some drops put in. The drops were to allow the ophthalmologist to get a better look at the backs of his eyes and see if there is any pressure on the optic nerve.
After a long wait we got to see the ophthalmologist: I do not know what it is, but light in the eyes is one of Kaiden’s pet hates and he screamed the place down. While Kai struggled in his mothers arms the doctor managed to get a good look at one eye and a glance at the other. All the while Kai was screaming and struggling which was very distressing for a parent. Jadie eventually has to hold his head still while the doctor had a look with the strange apparatus attached to her head. Eva though she looked very silly, and I would have to agree.
The outcome? Kaiden’s eyes are just fine. Woot, this in the only good news that we have had since we found out about the Cyst. With every other visit to the hospital with Kai resulting in bad news, I half expected the doctor to say “he will be blind by the time he is 3” or something equally scary. Thank goodness for that.
I am not sure how this works, but she also said that he does not need glasses. I don’t understand how they can tell as it takes an optician ages to figure it out while asking me “bettor or worse” and trying to fake me out by using the same lenses over and over again.
The doctor assured us that there is currently no ongoing pleasure on the optic nerve that was evident on the scan. This is most likely due to the hydrocephalus occurring before birth so this also relieves our fears of ongoing damage.
Next appointment is in two days for them to take bloods…lots of bloods…

Kaiden and the chicken pox

With Kaiden’s condition when his sister Eva had the pox last week she was put on medication to accelerate the progress of the virus. The result was that it was only 4 days from spots to crusting and 6 days to no spots.
There was some debate about what should be done for Kai: You can’t have brain surgery when you have chicken pocks as there is a far greater risk of infection.
There were two options:
  • Temporary immunisation so he does not get it, but this only works if he has not yet been exposed
  • Same as Eva and speed up the process
Our GP Dr Pexton from Williamwood Medical Practice is the only GP we trust.  Not only did he decide that something had to be done, but he also called the Nero-surgeon and Yorkhill Children's Hospital for advice. If you are not familiar with the UK GP system, they deal with all of the non emergency minor ailments and are usually your first call if you want to see a specialist.
The advice was to wait and see, and if he does get it to speed up the process so he has it for as short a time a possible. Dr Pexton said to call right away if he has symptoms.
Well…he got it!
Figure: Poor little man suffering from Chicken Pocks
He presented with spots on Thursday night and we called Friday morning for the prescription. Unfortunately Dr Pexton was off, sick I think :) and the receptionist said that she would put it through to one of the doctors as soon as possible.
Well, Jadie called after lunch to see when I could go an pick up the prescription and they had not even put it through! Jadie was livid and insisted that they put it through immediately. Which the receptionist ignored and was very rude and dismissive of Jadies concern.
I will never understand why a dumb assed receptionist thinks she has more knowledge of the circumstances and clinical risk of particular circumstances than a doctor or those intimately involved in the situation.
In fact Jadie called back just after 2pm and with the note still not sent through I called to say I was just coming down for the prescription and just sat there until I got it.
The receptionist even made me wait 20 minutes once I got there before even telling the doctor that I was waiting…
It sucks, but we has to tell Yorkhill that Kaiden has chicken pocks and they have moved the appointment with the opthamologist back to the 21st June.

Kaiden and the endocrinologist

Today we were at Yorkhill Children's Hospital to see the endocrinologist (pituitary doctor) and we had yet more bad news. We were hoping that Kai’s pituitary gland would be unaffected. Sadly not, and we saw on the scans that something that is supposed to be the size of a pee has been squished into a little flat horse shoe shape.
They need to do a whole lot more tests to identify the impact of this, but your pituitary is responsible for stimulating the generation of lots of hormones within your body including Growth, Thyroid and Testosterone. Apparently the most susceptible cells in there are those responsible for Growth, and they do not like being squished.
So we are looking at problems with growth from the age of 2 and potential thyroid issues as well as issues when Kai reaches puberty. This will be a long hall and he will probably need to be seen by an endocrinologist at regular intervals for the rest of his life.
Next week is the eye specialist at Yorkhill…I hope not more bad news…

Kaiden and the stressed parents

Yesterday I contacted Southbank and they said that they will try to get a hold of the Neurosurgeon this week! Tried our GP as well and he can’t do anything.
The Neurosurgeon's office called today to say the we will have our first consultation on 29th June. That’s 4 weeks from now and 5 weeks from our original diagnosis.
Even with the longest non-emergency case above from the US it was 4-6 weeks for surgery, and I do not think they will be doing it within a week of our first consultation. There is a consulting date on the 8th June but it is full. I don’t really understand why they can’t see a few people every day instead of making everyone wait weeks but their you go…
To be honest I don’t really give a monkeys about the consult as we have already been told he needs an operation. That's what I want a date for!
I have called the referring consultant and I am awaiting a call back. I am thinking of trying to get a second opinion from Great Ormond St. children's hospital, and I have emailed the director of the Children's Hospital Boston to see that the costs are there. However I have a feeling that the US will be “sell your house to pay for it” costs and Great Ormond St will have a huge waiting list.
Well, lets see. Spoke to the consultant and she has assured me that if she thought that Kai needed to be seen sooner then she would champion the cause. But she does not… It may be the correct answer, but it is not one that we want to hear.
Although from a clinical risk standpoint Kaiden may be less urgent than another case, my concern is for unnecessary damage that may occur in this waiting time. In a child as young as Kaiden where even a month is a significant portion of the life he has lead so far a lot can happen in a month.
Are they just going to wait until it is acute and we end up in the emergency room of the Southern?