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Toddlers: 12 - 24 Months
annabelle.27
member
What can cause a big head and small body in toddlers?
annabelle.27
member
My son has been going through some health concerns. They thought he had a bone disease because his soft spot is very large for his age, his head circumference is above the 97th percentile, but his body is at the 10th percentile in both height and weight and falling fast (I figure in another two months or so he'll probably have fallen off the charts completely if he continues on this path). He was on the 50th percentile for everything at 10 months. He also doesn't sleep very well at all- at 18 months old he still wakes up several times a night, and always has. All this caused our pediatrician to look for markers of bone disease in our son's bloodwork and he found that our son had ridiculously high levels of alkaline phosphatase leaking from his bones. These levels indicated a bone disease, so this supported his theory that our son had a painful bone disorder of some kind.
We've had x-rays, brain and skull ultrasounds, and are now going in for an MRI. All the x-rays and ultrasounds came back fine, with no indication of bone disease or other abnormalities present. Now, suddenly, his levels of alkaline phosphatase are completely normal, which means that our son, completely coincidentally, likely had a relatively common, benign condition ("phenomenon") called Transient Hyperphosphatasemia of Infancy and Early Childhood. This condition only explains the high levels of alkaline phosphatase, and none of the other symptoms. This also means that he does not have a bone disease after all.
But they don't know what's going on and I'm concerned. He's not growing at all, except in head circumference. He's still in 6 - 12 month clothing at 18 months. He eats well, he's active, he generally seems healthy, and has been on time or ahead for all his developmental milestones.
Our doctor hasn't been able to provide us with any more real theories, and everything I Google that might cause this sort of problem is linked with either a bone disease (which we now know he doesn't have, due to the now-normal bloodwork and the normal x-rays) or mental retardation, which he also doesn't have. Brain ultrasound didn't find anything abnormal, which means he also doesn't have hydrocephaly.
Anyways... we've been going through this for two months now with no answers and I was wondering if anyone had any thoughts... does anyone know of anything this could indicate? My parents are trying to convince me that kids go through growth at different rates and maybe his body is just focussing on brain development right now, but our doctor made a face at me when I suggested that like that wasn't possible. But I want to know if there's anything really wrong and our doctor isn't coming up with anything else other than "Let's just see what the MRI says".
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Re: What can cause a big head and small body in toddlers?
We've seen seven doctors. The first few weren't concerned, but it also wasn't as severe at that point. The last few have been very concerned but have no more theories that they're sharing with me. Between the two of them they've run a zillion tests, had second and third opinions from specialists at the Children's Hospital in another city, and no answers. But they do seem very concerned. I feel like they aren't telling me something, which is why I'm asking here. I was hoping that someone might know of something it could be that my doctor's didn't want to tell me about until they were sure. I hate not knowing. I'd rather worry about something specific than about unknowns. I actually felt better when they thought he had a bone disease- it was a step in the right direction, at least. I figured that they'd figure out what it was exactly and treat it. Now that we have no answers anymore and just referrals for more testing I worry more.
We've had the exact opposite issue. DS is in the 90% for body and his head has consistently been at 4%. We had to see the physicians assistant for his 15 month appointment and she stated a concern that his head was only at 9%. I was almost jumping up and down with excitement and she thought I was nuts! At his 18 month appointment, his head was finally at 14%.
If I were you, I would look for a second opinion. It seems like your pedi has exhausted his abilities. Are you anywhere near a good Children's Hospital? I'd ask your pedi if he can refer you to another specialist, maybe someone in another city or state even, but that is very familiar with bone and developmental issues in children. I'd keep pushing the issue (hard) until I had some answers.
They were repeated multiple times, and escalated from 4081 to 7100. Normal for a toddler is anything under 480, and "very high" is classified at over 1500. Now, suddenly, he's at 360. I feel like if anything is wrong, it's the one single test that put him within the normal range, since multiple tests showed they were very high (and it does kind of seem like he has a bone disease with all his symptoms- that's why the pediatrician tested for this).
We've seen several doctors, and the last two have been working closely with doctors from Children's. The doctors at Children's (who specialized in orthopedics and endocrinology) ordered a ton of tests and reviewed the results themselves, without actually seeing my son since the hospital is far away. They have no more answers. Our pediatrician ordered the MRI after one of these other doctors she was consulting with (a radiologist- there have been a few radiologists pouring over his imaging results, too) recommended it.
I'm pretty sure there's so many doctors involved because they suspect something but don't want to tell me yet. I want to know
They're certainly not dropping the ball and ignoring this.
This may be of no help to you, but I thought I would just throw it out there. All of the males on my side have HUGE heads from birth on, uncles, cousins, etc. It's really just a genetic thing. They look proportionate as adults, although they still measure bigger than most. It's literally just some kinda of genetic trait that they seem to have.
I know that may be a very lame thing in comparison to everything you have gone through, but I guess I'm just hoping there is a sliver of a chance it could be something like this? I really hope for the best for you!
Yes, we were referred to get a bone scan as well, but they don't think it's a bone disease anymore. We were working with a pediatric orthpedic doctor from Children's, but as far as I know he's not involved anymore because now they figure it's not a bone disease after his alkaline phosphatase levels went down. Now they're focussing on the brain, and actually just started talking to a pediatric neurologist. Which is why I'm so worried... brain problems seem worse than bone problems (although I know there were a lot of nasty bone diseases they were worried about).
lol, actually Kate, this is kind of what I'd hoped to hear. To be honest I wasn't that concerned about his size until fairly recently. I knew he wasn't really growing but he seemed so healthy and my parents convinced me not to worry about it as he ate well and is so active and strong. We were going from doctor to doctor for our son's sleep issues, which were very problematic (often, he wakes up every 45 minutes all.night.long). It wasn't until we saw doctor #5 that the size issue started to really seem concerning... now it's pretty much all they're focussing on and they've made me worried. They seem very concerned but they can't find anything wrong and I don't know if that's because he has something super rare or if it's because there's nothing wrong, you know? I'm hoping my parents were right all along, that he's just growing at an unusual but not problematic pace. But the more the pediatricians tell me they're talking to orthopedics and neurologists and endocrinologists and so on... they're freaking me out and I feel like maybe they're not telling me everything they know.
So that's what I was wondering- is there some condition out there that they're not telling me about until they know more, or is my son just un-average but still healthy?
yes, and he's generally ahead of his milestones. He seems very smart (but I could be biased, lol)
My son's head has always been 95th percentile. At our 9 mo. visit he was 10th-15th percentile for weight, which came as a bit of a shock.
We made more of an effort to make him eat, and now he's back to 25th or so percentile, and hopefully better at our 15 mo. appointment coming up.
Our doctor didn't recommend any special testing. He's a normal kid with a big head and a littler body.
Hopefully your LO will put some more weight on. With all the testing done, it sounds like maybe he's just a little guy with a big head. Hopefully you can stop worrying.
I hope this has a very happy resolution for you soon.
I doubt your doctors are keeping anything from you. That's just not typically how specialists operate. I assume from your obvious knowledge and hands-on concern that you are asking lots of questions of them when you meet with them or talk to them. Like, what are all the possibilities here? If they say we don't know they probably really don't know and are using all of their tools to make sure no stone is left unturned and they don't miss a diagnosis.
Has he had a head CT? When's the MRI? If the MRI comes back normal, have they said what their next step is?
See, I think the reasons the doctors are concerned is because this is a fairly sudden change. Those of you who said that your kids are the same- you all indicated that they were always that way, right? Our doctors seem so concerned because not that long ago he was exactly 50th percentile for everything, and this rapid a change in both head and body size- in opposite directions- indicates something, they seem to think.
Those of you with kids with large heads and/or small bodies: were they always that way? Or did they grow normally and then suddenly depart from their usual pattern?
I hope so! He hasn't had a CT. The MRI isn't scheduled yet, as far as I know- it was just at his last appointment that repeat bloodwork showed his ALP levels within normal, so that meant a sudden about-face in how they were handling his case. When we saw the pediatrician on Thursday she had talked briefly with a neurologist at Children's that morning, and was sending our son's medical history to him. After he had a chance to review it he was going to schedule the MRI. I don't know what they'll do if it's normal, they haven't said.
Annabelle,
Our son has always had 95th percentile head, but at his earlier appointments, his body weight was 85th percentile, then down to 50th percentile at 6 mo, then down to 10-15th percentile at 9 months.
I think he dropped down because his diet was mostly fruit.
What do you feed him? Do you use whole milk? We also give our LO plain whole milk yogurt at most meals and let him eat any carb he points at (including Doritos - go ahead and judge.)
Yep, whole milk, lots of cheese, lots of eggs (he's really into eggs lately, he's been eating one a day for the past few months), lots of carbs, fruits, veggies, the whole deal... he eats well, and well-rounded meals.
my son's head was in the 95th percentile when he was 8 months old and his weight was in or around the 75th. now at 19 months, his head has not changed much and his body has grown in inches, but not weight, he is down to the 10th percentile. my ped has never shown concern over his head size...and he seems fine, so i am not worried at all about it. when i asked about the weight gain slowing to almost no gain at times, the ped said "we only start to wonder when they start to lose, not slow down" as long as he is growing somewhere, it was good news. my ds has gained inches, but only about 3 lbs since he was 8 months old.
try not to google too much, but definitely keep talking to the docs-make them tell you what they are appearing to be keeping from you. find a doc that will have an open discussion with you-because that is what is most important as you try to deal with all of this. good luck!
Annabelle,
What are your son's stats, by the way?
My 13-month old's head is 49 cm. That's in the 97th percentile, I think his head has always measured over 95th. When it comes to head circumference, there is very little variation. The range for any given age is like 3-4 cm. see chart. So if your son's head was 1 cm smaller, no one would be batting an eye at this.
DS used to measure over 75 for height and weight. Now his height (30 inches) is like 15 percentile and his weight (22 pounds) is like 20th. No Dr has ever expressed concern about this.
I'm not trying to downplay your son's situation and it's great that he is getting an MRI. But I've been caught in the entanglement of specialists with my own health before. They look for problems. They look and look until they find one. If they don't they often keep looking. Just keep that in mind.
As a parent of a big-headed child, I'll tell you our stats, FWIW:
Born 3rd% for length & weight, just under 50% for head (full term).
By 4 months she'd gone up to 10th length, 20th weight, and 75% for head
Her length & weight have been consistent since. Her head went up to 95% I think by the 6 month appointment if I remember correctly. Since she had jumped percentiles, they did an ultrasound of her head (while she still had the fontenelle, sp?) to make sure there was no fluid on the brain, and the test was fine.
By the 9 month, she was over the 97%percentile. She only finally started flat-lining with her head size. Pediatrician has pretty much confirmed we have a child with a really big head, but that's it.
Also, she's no where near STTN. Every so often she wakes up only once to nurse, and we consider that a good night. And I don't think that's abnormal at all.
So, this doesn't help for explaining the alkaline or the fact that his weight/height is dropping off. But I did want to show you another weird-proportionate child's stats.
I'm not a doctor, but with what you describe, it seems odd to think it's anything with his brain because of his mental development. I think that's pretty darn obvious if there's a problem, especially at this age, KWIM? Have they thought about digestive issues? I know that's kind of out of nowhere, but if he's not gaining on weight/height I would start to wonder about his metabolism, etc. Maybe they are looking at the wrong things?
I can't tell you not to google & research. You are your child's advocate, and I would also keep at it if I were in your shoes. I'm not saying it's best for our mental health, but I can understand the need to figure out what (if anything) is going on. Good luck with everything, you will be in my thoughts!