As I discussed with you via email, My son did have a pretty big jump in head circumference where he was off the charts prior to 15 months but shortly after birth his head was small enough that they were tracking him for having a smaller than normal head size. Some of his other symptoms: While he is intelligent, he does seem to have memory issues at times, light sensitivity and daily motion sickness. Which is why your hydrocephalus/head circumference study as it related to EDS is making sense for us.
As we discussed, he had seen a neurologist at age two due to my concerns regarding his head circumference so I could follow-up with them on that visit. My question is at age six, would an ultrasound, MRI, etc. be likely to show the level of hydrocephalus that may be present? If so, I would presume an ultrasound would be the least invasive and would that be a good place to start?
Also, for my own brain fog and headache issues, I had an MRI about a year ago and was told it was normal but that I may have some sinus issues. I know it’s not your specialty, but just wondered if you would have an opinion regarding whether revisiting that MRI with the neurologist specifically regarding the possibility of a small degree of hydrocephalus might enable her to see something that may have been overlooked initially?
Excellent question — tricky answer. In a nutshell,if the hydrocephalus is going to show up on an image, you’d want an MRI – not an ultrasound. Radiologist won’t usually point out excess CSF in the subarachnoid space above the brain, though. If they see that, they will call it “mild brain atrophy” (which can be true — but I believe this happens secondary to the pressure on top of the brain). The references I have hyperlinked for you at The Driscoll Theory page will explain this for your doctors. [Some MRI’s I’ve seen absolutely take my breath away because of the amount of CSF — not just above the brain, but in the cerebromedullary cistern around the brain stem. I happened to have an EXCELLENT radiologist who saw it and called it “early spinal cord atrophy”. Fortunately, the symptoms that causes diminished over a month or two on Diamox and mast cell medications. No other radiologist called it, though, so I even speak to this wonderful doctor over the phone. Also, many of our doctors don’t look at our images — they depend upon the radiologist’s report. Not always a good idea! Frankly, if you have head circumferences showing abnormal growth of the head in the first 15 months, that’s hydrocephalus — but we usually don’t have enlarged ventricles (hence,it is called “external”). The easiest, fastest way to rule it out? A dose of Diamox at night, with your doctor’s OK. The next morning — if high pressure is an issue — the patient will have a knock your socks off positive reaction. I hope this helps. 🙂 Diana