Kaiden and the letters from America

As we had still not heard back from the Neurosurgeon (yes I know it is a holiday weekend), I went looking for someone to ask questions of. On the Children's Hospital Boston website I was reading about hydrocephalus and was surprised to find a list of emails at the end with a “If you have any questions, please contact us for more information”.
So I emailed them all, and to my surprise I received three replies the same day including from the Chief of Neurosurgery.

Based on the pictures on the blog site, I suspect that your son has a suprasellar arachnoid cyst. We usually treat these here with endoscopic surgery - although I must tell you that I would need to see a complete set of the images in order to be certain of the diagnosis and treatment. This is not a five-alarm emergency, but here in the states your child would have been seen the next day. If Kaiden is alert and awake, not vomiting, not holding his head or displaying changes in his ordinary demeanor, the exam could wait for a week or so. I think that you are seeing the NHS in action here - and who knows, maybe there is no emergency. But if it were my child, I would want an exam immediately. Good luck.
R. Michael Scott, M.D. Neurosurgeon-in-Chief, The Children's Hospital, Boston

So, this is particularly pertinent as over the last month Kaiden has gone from a contented settled baby to being very fraught and anxious. He is also holding his head two or three times per day. I will be phoning the Southbank clinic tomorrow to make sure that all of this went into the referral.

I think this should be seen and treated sooner. I would do it within a week of first making this diagnosis, as long as the child is not sick. Otherwise, it becomes urgent. I assume he is clinically well at present.
This should be able to be treated with a minimally invasive endscopic procedure: opening the cyst and establishing normal CSF circulation. An endoscopic third ventriculostomy may be necessary along with the cyst fenestration.
I hope this helps.
Benjamin C. Warf MD, Associate Professor of Surgery, Harvard Medical School, Department of Neurosurgery, Children's Hospital Boston

If you met Kaiden today you would not be able to tell him apart from any other 15 month old, except that he is not walking.

It is difficult to tell from the 2 images that you provided, but he clearly has a cyst with obstructive hydrocephalus. If this is a suprasellar arachnoid cyst - which is what I suspect based on the images - we would normally get formal visual field testing, endocrine evaluation (the location of the cyst can affect hormonal function in some cases) and try treatment with endoscopic fenestration. It is not usually an emergency, but we would often perform the workup I noted, followed by surgery within 4-6 weeks, barring the symptoms of severe increased intracranial pressure or sudden visual loss. Fortunately, children often fare quite well following treatment and I would expect that your child would have an excellent prognosis.
I hope that this helps and I wish you good luck with your child. If you wish to be seen at Children's Hospital Boston, we can help to put you in contact with our international office.
Edward R. Smith M.D. Director, Pediatric Cerebrovascular Surgery Department of Neurosurgery Children's Hospital Boston

This reply put me at ease for two reasons. First is the timescales, but I would like to actually be seen by a Neurosurgeon sooner. Second is the expected outcome…
I am very grateful to the guys from Children's Hospital Boston that replied to my emails. But I am also angry that I can't get to speak to a Neurosurgeon here in the UK for a month and yet not just one but four American Neurosurgeons take the time to email me. (sigh) This is the system we have and deal with it we will.
We will see what they say tomorrow…