If you can’t get to Boston (where I live) Mayo is the next best place.
Every Celt-child since the invention of the Ultrasound machine has been diagnosed in utero with hydrocephaly. Turns out we just have big heads. The Doctor and technician were pretty horrified by my giggling fit when they nervously came in and told me.
If he’s not showing any abnormalities, then the worst case is you’ve caught it in time to treat it. Don’t torture yourself. Surgery sucks, but this is not life-threatening. I have two friends in their 40’s who have shunts for different reasons. They never think about it.
I’m still rooting for “the kid just has a big head”.
So, it can be something that develops suddenly? How, a blockage of some sort? I have a cousin once removed who had it and Spina Bifida at birth and wasn’t diagnosed until 72 hours old, and at 29 she’s severely disabled because the brain damage was already done. Obviously if the OP’s baby was like her, there’s no way it would have escaped notice for seven months because no one ever would have mistaken a baby like my cousin for a typical baby after the newborn lie there like a lump stage; milestones, the ones that she got to at all, like sitting without support weren’t reached for years when they normally take months.
On the other hand, I knew a kindergartener a few years ago who got a shunt before any brain damage was done, so obviously early intervention makes a world of difference. If there is a problem, I’m sure it’s less severe than my cousin’s, PeskiPiksi, though I’m sure the websites are terribly worrying.
elfkin-I wasn’t shunted until 48 hours, and as I mentioned above, most SB’s have shunt revsions/malfunctions. I’ve been incredibly lucky!
Oh, I agree Mayo is the top option for us (Boston’s a bit far, whereas we have family who live near the MC in Minnesota, making that whole thing a lot easier (wouldn’t have to live out of hotels, etc.) I just meant I can’t think that far ahead yet. One thing at a time!
I’m feeling a lot calmer, though. I’ve reached a place where I know he’s either got it or he doesn’t. If he doesn’t, great! If he does, well, we’ll just deal with it. Like others have said, we’re catching it early, if any damage has been done it’s been minimal, and things could be a whole heckuva lot worse.
Although interesting tidbit…the nurse finally called me back today while I was out and talked to my hubby. She said this test wasn’t urgent, if we wanted to wait until October 1st (when our new, better) insurance kicks in, it would be no big deal. That made no sense to me…you would think something that can cause brain injury would be something you’d want to jump on pretty quick, no?
When my husband told me that I said no way–we’ll pay for it out of pocket if we have to. I can’t stand to wait that long.
I think you’re going to have to get surgery, if necessary, wherever it’s covered by your insurance. They’re not likely to want to pay for the Mayo clinic unless it’s medically necessary, which it probably isn’t, assuming there are qualified, covered neurosurgeons in your area. And that’s not something you’re going to want to pay out of pocket for, unless you’re rich.
While you’re at it, check whether any kind of Mayo stuff is covered by your old insurance or your new insurance. If it’s covered under the old insurance but not the new insurance it’s something you’d want to get a move on ASAP.
The nurse may have been asking about waiting for your new insurance to kick in to get the CT scan so as not to have to deal with any kind of pre-existing condition messes. Also, there could be reasons regarding a deductible and whether or not it rolls over. My guess is that maybe this is the type of thing where 6 weeks isn’t going to make a big difference and if it means that you might save thousands of dollars it could be worth holding out a bit longer.
Oh, good lord I didn’t mean we would pay for the surgery out of pocket! I wish we had that kind of money! 
I meant we would pay for the CT scan and then submit it for reimbursement later when we’re covered by COBRA. (We have a one-month gap in coverage between my husband’s job as a contract worker vs. being hired on as a regular employee w/ his company. Don’t you know it’s while we’re in that gap that all of this would go down.)
As far as paying for Mayo Clinic, of course if our insurance doesn’t cover it we won’t be able to do it, but I think there’s a good chance they’ll pay for it. A few years ago my Dad had to have some tests run on his brain (all turned out fine, thank goodness), and they went up to Mayo for it. My parents were surprised to find their insurance didn’t balk at paying for it. And if our old insurance pays for it, our new one definitely will, too. It’s a much better plan than the one we’ve been on. Anyway, it’s definitely something we’ll have to look into.
But I’m going to wait until Thursday to start. Trying to be optimistic!
I’m sure the odds are in your favour Piksi. Speaking as the mother of a big-headed brood :). But all the best for tomorrow anyway.
Today’s the big day! Hope the procedure goes smoothly for you and Will, and of course I’m hoping for the best possible results (hopefully quickly). It could so very easily be nothing more than a big noggin that’s growing a bit ahead of schedule, I know a couple families that have had this scare and that’s what it turned out to be. Even if it is hydrocephaly the fact that he has no symptoms of it yet is a very good thing…
Offering prayers today for you and your little Peski, PeskiPiksi.
Here’s hoping you just have a little chap with a big head.
All the best either way.
If the baby hasn’t any symptoms other than a large head then even if it is hydrocephalus then obviously the pressure isn’t building quickly. It would be serious and something that needs to be taken care of, but rushing headlong into emergency surgery has its risks as well. If the situation is not urgent (serious, but not urgent) then taking a little time to study the case, prepare, and set things up optimally may, in fact, lead to a better outcome. And you want to optimize whatever results you get. Unfortunately, with our jacked up health “system”, insurance coverage becomes a factor. Having a shunt will impact your son’s ability to get insurance coverage for the rest of his life. You really need to avoid having this excluded as a “pre-exiting condition” if at all possible.
But, again, here’s hoping it’s just a big head and nothing at all to worry about.
Quick update–just got back from having the scan done. He did pretty well, and it was quick. Technician said it’s usually two or three days before they call with results, so that means it’s likely we’ll be waiting over the weekend. Grrr.
Sorry to hear that you have to wait, but I’m going to chime in with the “hope it’s just a big head” crowd. A friend of mine actually had a similar issue with her son when a different pediatrician saw him for a check up. The new doc was just convinced that he must have some sort of condition! Well, Mom and Dad are smaller than average folks (she’s under 5’ and he’s about 5’7") with really big heads. Fingers crossed!
Hoping for good news for your family.
Hoping for good news. When my late husband was diagnosed as an infant, he had serious symptoms and emergency surgery, and everything still turned out fine. I think it is good that your little one doesn’t have any symptoms other than the large noggin.
Great news! Just heard from the doctor and everything’s fine. No swelling, no extra fluid, no tumors or growths. Kid just has a big head like his Papa.
I can’t tell you the weight that has just lifted from my shoulders. Thank you again so much to everyone who posted in support. It’s really helped me get through.
Let me be the first to say, Yayyy! That’s great news.