Some of you may remember when my son Kaiden was born I posted pictures of him and his sister. Kaiden is now 15 months old and is progressing perfectly in every area except that and we had been worried that he was not walking yet. We were only really concerned as his sister was walking at 8 months.

Figure: Kai as his usual self
 

Jadie and I were concerned over that and that he had a rather large head (noggin) so we talked to various GP’s and our health visitor who immediately dismissed our concerns every time. That was until about two months ago when we happened to get a GP whose daughter had Hyper Mobility and she recognised the symptoms immediately.

We were referred to the Southbank clinic who were lovely and the paediatrician confirmed that he had Hyper Mobility after testing all of his faculties. This just means that his joints are overly mobile and would need a little physiotherapy to help him out.

At the end the paediatrician remarked offhand that he has a rather large head and wanted to measure it. Sure enough he was a good margin above the highest percentile mark for his height and weight. The paediatrician showed the measurements to a paediatric consultant who, as a precautionary measure, referred us for an MRI at Yorkhill Children's hospital.

Now, Yorkhill has always been fantastic to us, and this was no exception. You know we have NEVER had a correct diagnosis for the kids (with the exception of the above) from a GP and indeed twice have been proscribed incorrect medication that made the kids sicker!

We now always go strait to Yorkhill to save them having to fix GP mistakes as well.

Monday 24th May, 7pm

The scan went fantastically, with Kaiden sleeping in the MRI machine for all but 5 minutes at the end where he waited patiently for it to finish. We were not expecting anything to be wrong as this was just a precautionary scan to make sure that nothing in his head was affecting his gross motor skills.

After the scan we were told to expect a call towards the end of the week…

Tuesday 25th May, 12pm

The very next day we got a call from Southbank who said that they has found an Arachnoid Cyst and could we come in the next day to see a Consultant and that Kai would need an operation.

Wednesday 26th May, 12:30pm

We went into the Southbank clinic and spoke to the paediatric consultant who assured us that it was operable but that it was taking up considerable space in Kai’s head. Cerebrospinal fluid is building up as a cyst is blocking the channels it uses to drain. Thankfully they told us that prospects were good and that Kai would expect to make a full recovery before showing us the MRI pictures.

Figure: Normal brain MRI cross section.

This normal scan shows the spaces in the middle of the brain that contain and produce the Cerebrospinal fluid.

Figure: Normal Cerebrospinal Flow

This fluid is needed by the brain but is drained in the middle down the spinal column.

Figure: Kai’s cyst blocking the four channels.

I do not think that I need to explain the difference between the healthy picture and Kai’s picture. However you can see in this first picture the faint outline of the cyst in the middle that is blocking the four channels from draining. After seeing the scans a Neurosurgeon has decided that he is not acute, but needs an operation to unblock the flow.

Figure: OMFG!

You can see in the second picture the effect of the build up of fluid. If I was not horrified by the first picture I was seriously horrified by this one.

What next?

Kai is not presenting the symptoms of vomiting or listlessness that would show an immediate problem and as such we will get an appointment to see the Paediatric Neurosurgeon at the Southern General hospital in about 4 weeks. This timescale is based on the Neurosurgeon seeing the scans. After that Kai will need an operation to release the pressure and either remove the cyst completely or put in a permanent shunt (tube from brain to stomach) to bypass the blockage.

We have updated his notes for the referral with additional recent information on top of the scan that the consultant things will help improve the timescales, but that is just a guess.

 

All we can do now is wait and see, and be watchful for tell tail signs of listlessness, eye problems and vomiting that would signify a worsening of his condition.