Friday, October 24, 2008

Head updates... CT scan results

Blah... too tired and overwhelmed to go into much detail... copying again from that message board.

The verdict is Zeke will definitely need surgery. His brain is growing really fast, and his skull isn't, so the brain is starting to put pressure on it, and the bone is becoming really thin in the back of his head. The bulging fontanelle are another sign he's outgrowing his headspace.

It's not 100% clear what they want to do yet, they are going to have an MRI and another scan done first to determine their course of action, but basically they want to open and re-shape his head to allow more room for his brain to grow. They're only going to do the back of his skull, as the bluging at the front is a response to the lack of room at the back, and hope that the front will adjust to having more space. They plan to re-assess the front sometime after the surgery.

We also have to see a geneticist to establish his head is just wonky and not caused by any other issues and to determine the likelyhood of any siblings or his children having the same condition - it's for research more than anything, they're doing a study on children with heads like Zeke's atm and want to add him to the study, which is fine by me, anything that can help other mums in the same position! But it will be good to know this too, seeing as we would like to have at least one or two more kids.

So the surgery will be scheduled after the next lot of scans, but they said sometime in the next 4-6 months as he is running out of room quickly. I am so not happy about this, but I know it needs to be done... I just didn't want my baby to have to go through all of this.

So yeah... that's where it's at right now... not sure what I think... anyways, massive headache.

Friday, October 10, 2008

Thursday, October 2, 2008

Zeke's head... more appointment news.

Lazy and need to hit the hay so copied directly from the message board. Just to keep you all updated.

As I've mentioned before we've been having some appointments with various pedis/specialists regarding Zeke's head circ and the fact that it's assymetrical - we just had our next lot, so it's time for an update.

Our main pedi referred us to the Children's Hospital cranio/facial unit, who we saw last week - LOVELY man, very straightfoward and friendly! Anyway, he said the circumfrence and prominent fontanelle require a CT scan (next Tues) and a neuologist and opthamology appointment just to make sure he's developing normally so far. Basically, the funny shape his head is doesn't fit with any of the 'typical' issues, so he's at a bit of a loss as to what to tell me right now. (He won't say it's fine, and he won't say he needs surgery - and I am fine with this, I want one answer for sure.)

So far Zeke's doing great, but we're looking for signs that he's got too much intercranial fluid, or too much pressure (hydrocephaly) or that his skull sutures are fusing prematurely, both can be serious if left untreated, so we want to get right on top of them if either situation is the case. Right now, our warning signs are the prominent fontanelle (his anterior fontanelle at his forehead sometimes bulges a tad, giving Zeke a slight cone-head appearance, and the area is very tight a lot of the time) indicates there could be a fluid issue, while the assymetry and bump on the back of the head are signs of possible fusing too soon.

So we had our neuro and opthamology appointment today, the opthamology appointment was fine, Zeke's eyes seem to be doing great, but he looks a little funny b/c of the drops added to dilate his pupils. I've had to keep the room dimmed all night as they can't shrink in self defence (so to speak) The neurologist said the left-right sutures (I can't remember what they're called, the ones that basically run ear-to-ear) appear to be fusing already as well as the area on the crown of his head (this is especially bad - should not fuse till he's around 2yo) - but won't be able to tell for sure until the CT is performed. He was pretty sure that surgery will be needed to resolve this, to give his brain more room to develop, but not until Zeke is between 9-15 months, so he is bigger and stronger - my poor boy!

I have check backs with the plastic surgeon at the end of Oct to review the CT scan, the neuro in Nov to discuss the CT and what the plastic surgeon said, and the opth in Dec just to keep tabs. I will keep you all updated as we find out more, but please keep your fingers crossed that Zeke won't need surgery... the neurologist was pretty definite about this, despite the fact he hasn't seen the x-ray, STUPID STUPID me forgot to take the cd of images from the local hossy along with me

Regarding the initial idea of cephalhaematoma (bone bruising) b/c the midwives at the hossy when Zeke was born were more concerned about his large head circ and didn't look at or dx a CH then, the doctors cannot treat it (ie not do anything) as one now, to be on the safe side.
And a question about CT scans for anyone in the medical field... will Zeke need to be given the contrast stuff (either orally or IV) for a cranial CT? I've looked it up and the most I can find is a definite sometimes maybe.