Alder Hey - Neurology Visit
So we have recently been attending some routine visits at Alder Hey Children's Hospital and the first was at the a dual speciality clinic under the Neurology department.
Our appointment was last Thursday (25th Jan) and a week later we attended Endocrinology but I will detail this in a different post and youtube video too next week.
So what is neurology??
For Callum and children with achondroplasia neurology take a close look at his skull and spine to ensure the bones are developing accordingly and nothing untoward is happening without our knowledge. When I first heard the word neurosurgeon I have to admit I was pretty terrified. I mean, Callum has short long bones so why do they need to go fishing around in his skull and brain?? Seemed a bit extreme if you ask me but now I understand the importance of this speciality and want to ensure other new parents of children with achondroplasia understand too, as well as anyone else interested in our story.
So here we go, lets try and explain..
A lot of the passageways in the body of a child with achondroplasia tend to be narrower than the average child and one of these is at the base of the skull where the spine attaches to your head and the nerves connect to the brain. If this little entryway, the spinal canal, is too narrow it can compress the spine and nerves and cause mobility issues. If this happens a neurosurgeon will have to intervene and make the entryway larger in a procedure called spinal canal decompression. Decompression surgery appears to be fairly regular amongst children with achondroplasia but either way we hope its an avenue we don't have to venture down.
To identify this size of Callum's spinal canal the neurosugery team are requesting an MRI of his head and spine to obtain base line results and check the fluid levels around his brain - well that's what I believe they are looking for. This will happen later this year, we don't have a date yet, and we will share this experience with you when we go. Callum has to be put under local anaesthetic to keep him nice and still so I'm really not looking forward to that either. My poor little baby!!
So .. (haha I even type so alot as well as say it)
The other element of our appointment was a chat with a respiratory specialist. Like with neurosurgery, the passageways we breathe through are also narrower with achondroplasia and children can be more inclined to temporarily stop breathing especially when sleeping. The specialist was really nice and listened to his chest and all sounded clear which was really good, however she is arranging a sleep study to take place in the summer to find out how his body is reacting whilst he sleeps. He will have to stay overnight and one of us can stay with him, and he will be monitored through his head, fingers and chest to see how his breathing changes whilst he sleeps and in particular to see how his brain functions and instructs the body to react. There is a possibility that he may suffer from something called sleep apnea which is were he would stop breathing multiple times throughout the night and if his oxygen levels show that this is happening we could be given breathing apparatus to help him (this is my guess from the research I've done myself).
All in all, at the moment everything is really positive and these tests are somewhat necessaary evils. We don't want to do them but need to to ensure everything is working as it should be. Hopefully they will all come back clear.
Thats all for now, please have a look at my youtube video below - grab a cuppa and put your feet up for 10 minutes.