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#1
09-13-2010, 12:09 PM
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My baby might have hydrocephalus
When Will had his six-month checkup, the doctor noticed his head circumfrence was at the 90th percentile, which was quite large compared to his height and weight (5% and 25%, respectively). She debated sending him for a CT scan then, but decided we should just keep a close eye on it sice he was still following the "normal" curve on the growth chart.
So today I took him in for a follow-up (half-way between his 6 & 9 month checkups), and his head is now way above normal growth. So the doctor has ordered him to have a CT scan to check for hydrocephalus, or "water on the brain." I'm just sitting here waiting for the scheduling people to call, reading about the condition and totally freaking out. He doesn't seem to have most of the other conditions, such as vomiting or irritability, but there is one that rings a little bell, which is difficulty eating. Not that he doesn't eat, but I've sometimes thought that he hasn't ever been as interested in his bottles as I've known other babies to be. Never thought that much about it until now. If he does have it, it means all kind of scary things like "surgery" and "brain damage" and "developmental disabilities." My poor little man. 
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#4
09-13-2010, 02:19 PM
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We'll be in prayer. Hopefully, it's not worst case scenario...
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#5
09-13-2010, 02:42 PM
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Kids w/my disability (Spina Bifida) tend to have hydrocephalus. Many times a shunt is punt in their skull, to drain off the fluid. My shunt is the original shunt (never revised), unlike most of my friends with Spina Bifida. Shunt surgery, IMO, isn't as scary as it sounds.
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#8
09-13-2010, 04:28 PM
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I wish to emphasize that these days most cases of hydrocephalus are treatable (see comments about brain shunts by etv78) and it is entirely possible for a child with this condition to grow up with normal or above normal intelligence in today's world.
If that is indeed what your baby has, well, it has been caught early, before major symptoms appear. That's a very good thing, and steps can be taken to avoid problems. The prospect of surgery can be scary, but the outcomes these days are usually good. Don't let anyone tell you your child is doomed, frighten you with horrible stories, or tell you that your child is now brain damaged or retarded. As far as you know, none of these apply. With proper medical attention NONE of them will EVER apply. Good luck, and stay calm.
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#9
09-13-2010, 04:29 PM
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Hopefully this is only a horse, not a zebra. Wishing you the best outcome. As a parent who has had to wait for results before (in my case, genetic tests to find out if either or both of my kids had the condition that killed their father at 45; neither did, as it turned out) I know full well the special level of hell that sort of thing can put us in.
I recall reading once that Stephen King and his wife had a similar scare with one of their sons and it turned out that he simply had a larger than typical head. Hoping this is the case here.
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#10
09-13-2010, 04:30 PM
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good luck. fingers and toes crossed.
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#11
09-13-2010, 04:33 PM
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Quote:
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#12
09-13-2010, 04:51 PM
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They diagnosed my son with hydrocephalus at about the same age. I was devastated, so I know exactly what you are feeling right now. They were in the process of scheduling him for shunt placement surgery, when he saw a new neurologist, who diagnosed him with something else (Chiari Malformation), NOT hydrocephalus- his ventricles actually enlarged to compensate for excess fluid, and it was not sitting on his brain. I had taken him to the ER with vomiting, as they had told me that was one sign of increased pressure, when he saw that neuro, and if he hadn't seen her, he would have had an unnecessary surgery and shunt. I implore you to get a second opinion. I wish you and your baby well, and please keep us updated.
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#13
09-13-2010, 05:07 PM
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I have hydrocephalus, first diagnosed when I was 9-10 months old. I've had several shunt revisions, the last when I was 11 or 12(I can't remember) I've graduated high school and college. I have epilepsy that is likely caused by former shunt revisions, but I find seizures to be a small price to pay.
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#15
09-13-2010, 06:08 PM
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Thanks for all the responses and kind words, everybody.
Very frustrated. Nobody ever called to set the appointment, so I called the Dr.'s office to find out what was going on and never got a call back from them, either. So I have to wait until tomorrow to find out anything. Thanks especially for your post, Broomstick, and you're so right. All the websites talk about all these complications that can arrise from hydrocephalus, or from having the shunt, but they don't say how likely those outcomes are, especially with early intervention. So far he seems perfectly normal--he's met all his developmental milestones with no problems, seems happy and alert and everything, so if he does have it, seems it hasn't done much damage yet. And thank goodness, even if it is worse-case-scenario, it's something that's treatable. I know some parents get much worse news, and I can only be grateful that we're not facing something like that. Of course, it's also a possiblity that all of this worry is for nothing. My dad (who Will greatly resembles) has kind of a big head. My sister pointed out this picture we have of him when he was about 3 or 4, and it's true...his head is HUGE compared to his body in that pic. And he's very normal--actually, he's got much higher-than-average intelligence. So there's always hoping that's all it is with Will--he's just got a big head to accomodate big brains! Just wish we knew for sure one way or the other.
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#17
09-13-2010, 09:57 PM
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I was a hydrocephalic baby. Now 42; no developmental or neurological abnormalities. Ivy League; government lawyer; happily married. Shunt is still in; hasn't been checked in decades. XXL hat size, however.
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#19
09-14-2010, 11:16 AM
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Quote:
 . But more seriously - Tom Tildrum would seem to be a pretty good example of how well someone with hydrocephalus can turn out. Times are different from 50ish years ago, for sure, when such a diagnosis would be a lot harder to overcome. Scary though, I hope those doctors call you back SOONEST so you can get rolling with confirming the diagnosis and getting it treated.
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#20
09-14-2010, 03:17 PM
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Okay, CT scan scheduled for Thursday morning.
Thanks again to everyone who's responded, especially those of you who have experience with this. Glad to know there are a lot of success stories! My mom has already decided that if he does need shunt surgery, we have to go to the Mayo Clinic to have it done. We'll see. My husband and I have decided that he doesn't have hydrocephalus, he's just an evil-genius in waiting. Someday he'll be some superhero's arch nemesis, hatching evil plans to conquer the world with his oversized brain. (But he'll always love his mother.)
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#21
09-14-2010, 03:37 PM
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#22
09-14-2010, 04:36 PM
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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. Last edited by TruCelt; 09-14-2010 at 04:36 PM.
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#23
09-14-2010, 06:35 PM
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I'm still rooting for "the kid just has a big head".
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#24
09-14-2010, 07:09 PM
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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.
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#26
09-14-2010, 08:39 PM
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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.
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#27
09-14-2010, 08:42 PM
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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.
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#28
09-14-2010, 08:49 PM
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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.
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#29
09-14-2010, 09:08 PM
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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!
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#30
09-16-2010, 05:50 AM
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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.
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#31
09-16-2010, 06:22 AM
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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...
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#32
09-16-2010, 09:08 AM
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Offering prayers today for you and your little Peski, PeskiPiksi.
Last edited by Ellen Cherry; 09-16-2010 at 09:08 AM. Reason: remove stray comma
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#34
09-16-2010, 09:31 AM
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But, again, here's hoping it's just a big head and nothing at all to worry about.
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#35
09-16-2010, 11:00 AM
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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.
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#36
09-16-2010, 11:10 AM
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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!
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#38
09-16-2010, 02:57 PM
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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.
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#39
09-17-2010, 11:21 AM
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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.
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#40
09-17-2010, 11:24 AM
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Let me be the first to say, Yayyy! That's great news.
__________________
I like to keep my private life private. And my pirate life pirate. And my private pirate in chains in the basement.
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#41
09-17-2010, 11:43 AM
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Woohoo!
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#42
09-17-2010, 01:25 PM
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Ah, that's fantastic news!
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#43
09-17-2010, 01:35 PM
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 I'm really happy to read this. Both of my kids had giant, candy-apple heads. We called them "Cranium Plus".
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#44
09-17-2010, 01:41 PM
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#46
09-17-2010, 01:52 PM
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Yay!
I'd still get a second read on the films but that's just because of our own experience- my son had a scan at 2 months that was mistakenly read as negative. Not to be a Debbie Downer, I know you feel so relieved- just saying. Does your son hold his head up, roll over, sit up unaided, and things like that? If so, those are also very good signs that nothing's wrong.
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#47
09-17-2010, 02:15 PM
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Quote:
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As for second opinion, the doctor said both she and the radiologist looked at the film and agreed. Does that count as two?
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#48
09-17-2010, 02:19 PM
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If you're comfortable with it, then I'd say that's enough.
But still do keep an eye out for him becoming unable to look up, or unexplained vomiting, and other signs of pressure. And, also, you might could post some pictures, if you were so inclined.
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#50
09-17-2010, 03:04 PM
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Here you go.
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