AIS, low level of fitness & poor nutrition... Is there a connection?

[Elisa]

I've been wondering if these three things are somehow connected. What do you guys think?

Looking back on my son (14) who has severe scoliosis I have to wonder if his complete lack of interest in any sort of physical activity along with his constant cravings for junk food, fast food and sweets and treats might have somehow caused his scoliosis.

He seemed pretty normal until he was about 9 and then all of a sudden he refused to participate in any sort of sports, games or just running and jumping around like most kids his age did and he became a hermit so to speak.

He also seemed to dislike pretty much everything that was good for him, was extremely fussy and seemed addicted to all kinds of unhealthy foods which became such a battle of wits in the house.

His PE teachers have written on his report card that he has a "low level of fitness" and at the time we kinda joked about it but never really did much about it, but then again he wasn't exactly cooperating with us when we tried to get him to be more physical. My husband even bought two little off-road motorbikes and two kayaks and a very nice BMX bike for him to have fun with but he had zero interest in any of them and my daughter ended up on the motorbikes and the kayaks.

From age 9 to 12 something he lived this kind of lifestyle and at 13 was diagnosed with moderate scoliosis and now at 14 he is very severe. This does have me wondering if all of this is somehow connected.

I should add that in the past six months he has completely changed his diet: almost no junk food, fast food, no pop and has developed a taste for healthy foods and pretty much eats nothing but. It's like all of a sudden he craves good food, fruits, vegetables, whole grain breads (before he wouldn't eat bread if it had seeds in it), green teas, water and all my daughter's vegetarian cooked meals. It's really bizarre how he's changed and of course we're really thrilled with this new attitude. The other night he ate brussel sprouts and loved them. He'd NEVER eat those before as he was extremely picky about absolutely everything; drove us nuts.

He's still not very active but he has been doing a few exercises at home which is great but I'm sure that's b/c of dealing with his scoliosis discomfort.

Does anyone else have kids/teens that have been very inactive, are extremely picky eaters, crave junk/fast foods, are really thin who also have scoliosis? Maybe there's no relation at all but it does have me thinking somewhat b/c he was definitely different than my other two kids.

[Pooka1]

I'm not sure why you think those thing caused the scoliosis as opposed to some condition causing those things AND the scoliosis.

How would you tell the difference? Why jump to the conclusion that the scoliosis is a result of those things? Maybe it is DRIVING those other things.

You might consider having him evaluated by a medical geneticist.

[Elisa]

He was and somewhat is really different from my other two kids. Now of course every kid/person is different but he really stands out as a lot different not only between his brother and sister but to others his age in general.

I guess I'm wondering but probably will never know if these things somehow caused his scoliosis of whether his scoliosis caused these other things, which came fist so to speak or if none of this stuff is even remotely connected. It does make me wonder though and gives me something to think about, so I was wondering if others out there experienced similar things with their scolio kids/teens.

My son is also very odd in the sense that he appears to be very mature for his age, even wise and I honestly do not recall him ever having a temper tantrum and to this day he seems to just have this amazing intuition about things and a deeper understanding of the world around him. I'm sure that's just his personality type but I thought I'd throw that in there, lol.

[Pooka1]

You might want to consider that Marfans for example has a ~25% spontaneous mutation rate.

That is, 25% of the time, a kid will have it with NO family member affected.

If my kids have Marfans it will almost certainly be a spontaneous mutation.

Other syndrome may have similar or higher spontaneous mutation rates. Only a medical geneticist can even try to connect his signs and symptoms to anything.

Lay speculation is futile.

[Elisa]

Lay speculation is futile.

No doubt but it does have me wondering if there are other scolio kids out there that seem similar to my son's sudden lack of interest in physical activity, his hermit-like behaviour, thinness and junk food addiction.

Now if others come on here and tell me that their scolio kids enjoy physical activity, are social and are normal eaters then there goes my connection idea, heh.

[Pooka1]

Well I see the main problem as there is likely a boatload of kids who meet that exact description and don't have scoliosis.

The connection seems completely random at this point.

[Elisa]

Well I see the main problem as there is likely a boatload of kids who meet that exact description and don't have scoliosis.


Probably. He's such an odd bird though in so many ways it does have the wheels in my head turning b/c this whole "idiopathic" thing is just so... bewildering.

Hey. off topic but your mailbox is full.

[livingtwisted]

Hi Elisa,

There are so many different factors involved and even once you find a correlation, it's so hard to know what is a cause and what is a symptom. I'm constantly thinking of new possible factors that make me different from my sister who doesn't have scoliosis. I think what you're describing could probably describe a lot of adolescent kids, with or without scoliosis, who tend to withdraw or rebel. I wouldn't worry about junk food or fitness having caused it. I was raised with a ridiculously healthy diet and I played soccer for years and I still got it anyway. These types of things may make subtle differences in the severity of the curve, but there's got to be something much stronger at work here.

But for the sake of discussion I'll throw in a few more possible commonalities... shyness, poor vision, and left handed. Anyone?

[livingtwisted]

I'll elaborate a little more...

shyness - I think this has been reported as a result of diagnosis and/or bracing. But I have a theory (based only on anecdotal stories) that it might actually be present before the scoliosis develops. Again, just a theory, but curious to hear if this fits into others' experiences.

poor vision - I believe there are studies that actually identify this as an environmental factor. If I remember correctly it has to do with leading with your strong eye, which tends to cause the whole head to shift off center.

left handedness - I think that studies have dismissed the hypothesis that there is a correlation between handedness and scoliosis, but I wonder if it couldn't still be an environmental factor, depending on your environment. For example, I always had to sit in school desks that were made for lefties and had to twist my body into the exact position I'm in today in order to get my left elbow on the desk.

Again, these are just theories based on my own experience and maybe I'm just grasping for some sort of common ground or explanation I can understand. Elisa, does your son have any of these? Anyone else?

[Elisa]

Hey Mehera, glad I'm not alone sitting here thinking or perhaps over-thinking about which came first, my son's scoliosis or other factors that perhaps caused it. I have always been an extremely curious person and have this need to find out 'why' things happen and if I don't know why then I'm full of guesses.

My son is right-handed. He is indeed somewhat shy but lately I've noticed he's much more outgoing, happy and more social even with his severe scoliosis. Maybe that has to do with his MUCH better diet? I do notice that he doesn't have such dark circles under his eyes these days. Good to know you had a good diet and was active as a teen and you still got scoliosis. Well not really, but you know what I mean.

A few months back my son was complaining about vision problems in the classroom so I took him for an eye exam and it was determined that he did have one very strong eye but to be honest with you I didn't really understand exactly what all that meant. Bottom line was he didn't need glasses but it was recommended that he sit closer to the front of the class so he didn't have to strain so much. Like I said, it was explained to me a few times but I just didn't really get it and he didn't need glasses so off we went.

When he was 9 and became a hermit he'd walk around the house in his boxer shorts only and he kinda moved his body weird like he was floating around and we used to call him Gollam (sp?) a character from the Lord of the Rings. He's still super sensitive to clothing and the absolute first thing he does when he gets home from school is strip down and put on his pj bottoms. When his new fleece hoodies aren't fluffy on the inside after washings he won't wear them b/c he says they're uncomfortable. Needless to say I've got a rack of them in my own closet b/c they are perfectly good but not to him.

He has beautiful straight teeth with not a single cavity. Does that mean anything, hehe?

[Elisa]

I keep thinking that my son's scoliosis just happened a year or more ago but now I'm thinking it might have started when he was 10. AIS is from ages 10-17 and I know I keep saying it was when he was 9 that he changed but it could have been 10. There has to be a precursor to the crooked spine, maybe? I know his spine was 'normal' looking when he was younger b/c he always walked around with just his shorts on so the rest of his body was totally visible. He did start shifting to the right about then though. Like I said, he seemed to float or glide when he moved and didn't take definite forward steps like most people. He still glides around, unlike his sister who stomps on the hardwood floor on her heels.

[Elisa]

I've thought of another oddity Mehera, my son absolutely hates hates the sun and he won't join us outside for bbq's or just hanging out in the backyard unless he's totally shaded. He stays totally white all summer; maybe he's a vampire.

Although, with this whole new change in diet and lifestyle maybe he'll end up enjoying sitting outside in the sunshine for five minutes.

[livingtwisted]

Hearing your description of his eyesight sounds very familiar. I remember having to sit closer in class. And I was actually talking to my mom about all this the other day and she mentioned that when it was first noticed (probably 2 years before the scoliosis) only one of my eyes was bad and at the time they questioned whether or not to get me glasses at all. They ended up getting them and my eyes got progressively worse for years. Both eyes are now the exact same prescription.

I also get home and immediately change into PJs most days. On the weekends I'll wear yoga clothes if I can get away with it. I think it has to do with a constant feeling that something just isn't right. It's not pain or even discomfort, just a yuckiness. And clothes that are scratchy, tug at you, or stick into you somehow exaggerate that feeling.

Not sure I can relate to acting like Gollam or a Vampire, but we all have our idiosyncrasies :)

[titaniumed]

Elisa

Its so hard to say.... I was extremely fit and ate well as a kid, yet kids in Africa with poor diets seem to end up with scoliosis often.

I posted a thread here about living to 100 about a year ago. Both people from Okinawa, and Sardinia had different diets and different lifestyles. Both groups were active, but were not exercise freaks....One group was on a meat diet, the other on fish and veggies.

I wouldn’t worry about why your son has scoliosis. I have friends and have known people with all sorts of different problems.... One things for sure, if you have your health, you are blessed.

I was 10 when I noticed that I had problems doing sit-ups in gym. I would pull up slightly to the side.... I remember that very clearly to this day.
Ed

[Elisa]

It is what it is Ed and I accept that. I'm probably more accepting than some that say "oh my God why me?" b/c I say "well why not me?". I totally accept my son's diagnosis, although he hasn't had an official one yet but I have a pretty good idea what's going on. I know what is now but I'm still so curious as to how it got there. It's all so very interesting and definitely a ride. Speaking of such, when is our ride to someone who actually specializes in this type of thing.

[foofer]

You're all making me laugh.

Elise: I had pretty good nutition, was considered a good athlete- always got picked first, second, or third to be on a team...but that went south as I got to be around 16 + - could no longer throw a softball from outfield to home plate and not have it hit the ground in infield, horrifying....Was also shy my whole life and less so now, although it creeps up and strangles me every so often. I love the sun and so sad that tanning is no longer politically or medically correct.

Mehera: I'm right-handed, have to change into jammies the minute I get home, almost violently, had absolutely perfect eyesight until I hit 40's... now eyesight is terrible and I have to wear "progressive" prescription glasses - hate them- or wear a 3.5 reader for reading, a 1.75 for TV, and a 1.5 for driving. No particular feeling of being Gollamish or vampirish. Sometimes a little Cinderella ish.

Ed: Funny about the sit-ups...I remember in about 7th grade being totally embarrassed that I could not do a forward roll anymore without listing leeward and could no longer do a backward roll at all. On a disrelated note, I've been wanting to tell you that it turns out that my mother, benign well-behaved person, is a hose puller. I feel almost proud.

I also struggled with bladder infections, starting at the age of 12 and randomly striking in clusters throughout my life. I also have a heart murmur. I'm also considered to be very even-tempered and mellow, but about once every 5 years or so, the Irish in me comes out full tilt and watch out! Anyone?

[JessicaNoVa]

Hmmm...my turn. My daughter has AIS and the following describes her:

shyness: I'd call her more "reserved" than shy. If she's comfortable in a situation, there's no shyness at all - in fact quite the opposite as she tries to take center stage.

handness: she's left handed for writing but does almost everything else with her right hand.

vision: she's nearsighted and wears contact lenses.

eating habits: she takes after me. She knows what's healthy and if in the right frame of mind will make healthy choices but prefers junk. She's fairly thin - not skinny but certainly not overweight at all.

activity level: eh - medium. I've noticed her not being quite as active now that she's in a brace, but that could just be her age (11) and that's it's winter. She takes dance lessons once a week and has PE three times a week.

[mamamax]

ok - I'll chime in :-)

Precious/precocious child - shy adult but borderline extroverted in comfortable surroundings, sometimes attitudinal.

Right handed (retrained lefty)

Farsighted, one lazy surgically corrected eye.

Understand the value of proper nutrition but prefer all comfort food.

Much more mental than physical.

Headaches when younger - Tinnitus at 40 something, prolapsed valve - heart murmur that resolved itself in old age, low blood pressure (borderline hypoglycemic in youth) Outside of the obvious, no other medical conditions of note.

Scorpio on the cusp of Sag with Aquarius rising. Some say that explains everything.

[Elisa]

Not sure I can relate to acting like Gollam or a Vampire, but we all have our idiosyncrasies :)

Hmm, he's not as Gollam like these days and does tend to walk more upright than he did when he was younger so maybe that was just a kid thing. He was all over the floor with his body, bending and twisting around. Neither of my other kids did this. I'm sticking with the Vampire theory though b/c he really does hate the sun, brightness of any kind and when it's cloudy and rainy out he says: "what a nice day it is" as well as I have personally seen him hanging upside down in his closet on one of those chin-up bars, hahaha.

[foofer]

Hmm, he's not as Gollam like these days and does tend to walk more upright than he did when he was younger so maybe that was just a kid thing. He was all over the floor with his body, bending and twisting around. Neither of my other kids did this. I'm sticking with the Vampire theory though b/c he really does hate the sun, brightness of any kind and when it's cloudy and rainy out he says: "what a nice day it is" as well as I have personally seen him hanging upside down in his closet on one of those chin-up bars, hahaha.

LOL....Blessings to your little Dracul....

[Elisa]

Here's a pic of my son that was taken about a year or so ago. See how pasty white he is, slumped in a chair and wearing a housecoat all day long. He's never in normal clothes when he gets home and if it's the weekend he stays in either a housecoat or pj's. He's extremely picky about his socks too and if they aren't super soft and loose, they drive him crazy. He also absolutely hates getting his picture taken and that was long before his back started going all wonky.

http://i241.photobucket.com/albums/ff196/Carol-Anne_01/002-2.jpg

Off topic: We have some snow, woot!

[JessicaNoVa]

Here's a pic of my son that was taken about a year or so ago. See how pasty white he is, slumped in a chair and wearing a housecoat all day long. He's never in normal clothes when he gets home and if it's the weekend he stays in either a housecoat or pj's. He's extremely picky about his socks too and if they aren't super soft and loose, they drive him crazy. He also absolutely hates getting his picture taken and that was long before his back started going all wonky.



Have you ever thought of Sensory Processing Disorder? (sometimes known as Sensory Integration Disorder)

[Pooka1]

http://www.quackwatch.com/01QuackeryRelatedTopics/sid.html

[hdugger]

I've wondered something similar about my son. I'm actually beginning to wonder if he didn't have some vitamin D deficiency around that time. Speaking as a fellow northern latituder, it seems quite possible that our kids could have gotten less sun and be fussy enough eaters that they weren't getting a whole lot of vitamin d from milk.

My son had the additional hit of being a homeschooler who, during his late teen years (when all the curving started) would flip his schedule around so that he was waking up late in the afternoon. In Oregon, it's hard to get sunshine if you're out at noon. If you don't get out until 3, it's damn near impossible.

So, yeah, I absolutely think it's possible.

I still think they have to have some kind of asymetrical loading for the vitamin D deficiency to make sure a difference. So, the bones are more prone to molding because they're weaker, and then the slightly obsessive character of these kids (is yours on the asperger's scale? Mine was pretty far out on the scale as a young kid, and is almost "normal" now, so he was probably mid way on the scale during the curing years) means that they're often in roughly the same position for a long time doing something obsessive.

Anyway, yeah, I've been giving this a good deal of thought lately. I think it has to be a perfect storm kind of situation - take a scrawny kid, throw in some odd character traits, move them to some northern climate, and they start twisting up.

Or, maybe it was all written in detail in their genes and we can stop second-guessing ourselves :). Frankly, I'd *like* to believe that all scoliosis is 100% genetic. It would keep me from feeling like I let him down completely by letting him engage in the risky behavior of sleeping late in a northern latitude. I'd like to. But I don't.

[hdugger]

Here's a pic of my son that was taken about a year or so ago.

OMG, we have the same child :)

I like the fact that he's not only pale, but he has the cat's throat in the correct position for drinking blood.

For the rest of the discussion, I think it's very likely that multiple causes for scoliosis will be found, and that each one will have a different recommended treatment plan. That's one of the things I find so frustrating in all the arguments for/against this or that cause or cure. Maybe we're *all* right, just each for our own subset of the population.

[Elisa]

I've wondered something similar about my son. I'm actually beginning to wonder if he didn't have some vitamin D deficiency around that time. Speaking as a fellow northern latituder, it seems quite possible that our kids could have gotten less sun and be fussy enough eaters that they weren't getting a whole lot of vitamin d from milk.

My son had the additional hit of being a homeschooler who, during his late teen years (when all the curving started) would flip his schedule around so that he was waking up late in the afternoon. In Oregon, it's hard to get sunshine if you're out at noon. If you don't get out until 3, it's damn near impossible.

So, yeah, I absolutely think it's possible.

I still think they have to have some kind of asymetrical loading for the vitamin D deficiency to make sure a difference. So, the bones are more prone to molding because they're weaker, and then the slightly obsessive character of these kids (is yours on the asperger's scale? Mine was pretty far out on the scale as a young kid, and is almost "normal" now, so he was probably mid way on the scale during the curing years) means that they're often in roughly the same position for a long time doing something obsessive.

Anyway, yeah, I've been giving this a good deal of thought lately. I think it has to be a perfect storm kind of situation - take a scrawny kid, throw in some odd character traits, move them to some northern climate, and they start twisting up.

Or, maybe it was all written in detail in their genes and we can stop second-guessing ourselves :). Frankly, I'd *like* to believe that all scoliosis is 100% genetic. It would keep me from feeling like I let him down completely by letting him engage in the risky behavior of sleeping late in a northern latitude. I'd like to. But I don't.

That is very interesting about the lack of exposure to the sun up north here. We do seem to get a fair bit of sunshine on Vancouver Island compared to the rest of Canada and the winters are quite mild but the boy absolutely hates the sunshine, especially the heat and it is possible that he was/is deficient in vitamin D. He has been taking about 2000 units a day since his diagnosis but I wish I had thought of giving him the supplement before his back went west.

To my knowledge he is not on the Asperger's scale and the only thing I can think of that he obsessed over was his computer and computer games and yes he did sit for extensive periods of time playing games and such and that's why when we first noticed his back being off, we were positive it was from spending too much time in the same slouched position so we cut down his time on the computer. I mentioned this to our family doc and he just stood there shaking his head saying that that had absolutely nothing to do with his scoliosis.

Here's another pic of him just before we moved up here to CR. That was taken the day I adopted two chinchillas from a lady who rescued them from a filthy fur farm that had been shut down by the authorities, all the chinchillas (that survived) were taken away and adopted out to local people. His back seemed perfectly fine back then which was close to three years ago. He's still pasty though b/c he wouldn't go outside.

http://i241.photobucket.com/albums/ff196/Carol-Anne_01/108_1974.jpg

Just for fun, here's one of me sitting in my chinchilla room with one of my fur beasts. Actually it's the same one Max that my son is holding in the other pic. Max is huge now and very very fluffy.

http://i241.photobucket.com/albums/ff196/Carol-Anne_01/001-2.jpg

[hdugger]

Not to diss docs, but it's called idiopathic for a reason. They'd have a hard time proving that some subset of kids don't get scoliosis due to repeated asymmetical force. They can prove that not *all* cases are caused that way, and they might even be able to show that *most* cases are not caused that way. But, none of us really know enough to rule things out for any case

I love the chinchilla pics!

[Elisa]

Not to diss docs, but it's called idiopathic for a reason. They'd have a hard time proving that some subset of kids don't get scoliosis due to repeated asymmetical force. They can prove that not *all* cases are caused that way, and they might even be able to show that *most* cases are not caused that way. But, none of us really know enough to rule things out for any case

I love the chinchilla pics!

Exactly! It really bugged me too when he said: "Oh, his back has been like this for a LONG time... it doesn't get like this overnight you know." He made me feel as though I was a negligent mother b/c I didn't notice it before and he just stood there in disbelief. I told him that really, his back just starting looking off recently and it was his sister who actually pointed it out to us but it was like he thought I was making it all up.

Well, since his original diagnosis close to a year ago, he has gone from a 47* to apparently a 75* and some of you say it's more like an 85* or more AND those x-rays were taken exactly three months ago and he now has a huge rib hump with stretch marks. Yeah, take that Mr. GP know it all/nothing! >_<

On a positive note, my son's sudden switch to wholesome foods and his increased appetite looks good on him. He's definitely got a bit more substance to him now and he wrote out his shopping list yesterday and it was full of good stuff including spinach. Now why didn't he like all this good stuff a year ago eh?

Edit: Glad you liked the chinchilla pics. I've got a few hundred more I could post if you like, lol.

[livingtwisted]

For the rest of the discussion, I think it's very likely that multiple causes for scoliosis will be found, and that each one will have a different recommended treatment plan. That's one of the things I find so frustrating in all the arguments for/against this or that cause or cure. Maybe we're *all* right, just each for our own subset of the population.

I wouldn't be surprised at all if in the future there are a whole lot more classifications than there are now, each with their own cause(s). It would be nice, like you said, to learn that it is 100% genetic so that we can stop what-if-ing and move on. But I guess even more than that, I wish for one single cause like a chemical imbalance in the brain that could actually be corrected with a pill. ahh, to dream...

[Sherie]

He's still super sensitive to clothing and the absolute first thing he does when he gets home from school is strip down and put on his pj bottoms. When his new fleece hoodies aren't fluffy on the inside after washings he won't wear them b/c he says they're uncomfortable. Needless to say I've got a rack of them in my own closet b/c they are perfectly good but not to him.

He has beautiful straight teeth with not a single cavity. Does that mean anything, hehe?

This is weird because Sheena is very sensitive to clothing too! When I bought her clothing she would ALWAYS feel the inside first, she didn't even care much what it looked like outside (she's actually very fashion conscious now but still will only wear soft clothing, no tags). I have never known anyone that sensitive to clothing, none of the rest of us are like this in any way. She's also very thin, near sighted, introverted and a thinker. She takes after my dad's side physically who is also very thin, has mild scoliosis and a leg length discrepancy as does my sister. There's definitely something genetic going on but I can't find anything specific to these symptoms.

On the other hand, I've seen plenty of kids who are athletic, dancers, gymnasts, etc.
I can only say that in my family, there is a familial link. My daughter says she does not want to have biological children because of the fear of passing it along.

Oh, she also had a neurological reaction to the first pertussis vaccination, which later came back to haunt her in middle school, she actually came down with whooping cough and was sick for 3 weeks. I always wondered if there was a link. I had pre-eclampsia too with her (probably not related at all, but since I had absolutely no predisposing factors, it's just odd).

I've given this a lot of thought over the years and would be interested to find out if these are all symptoms of something bigger going on.

[Pooka1]

When there are various long standing research group working on totally independent lines of attack as is the case for AIS, it does seem to suggest that there is more than one etiology.

But as that one researcher who summed up these various approaches started with, "it's all genetic."

I think if asked he would certainly add epigenetics as the best explanation so far for why identical twins are only ~75% concordant. I was shocked about how different identical twins could be on the genetic level in terms of gene copy numbers, different active X chromosomes in girls, etc. etc.. These observations seem like good starting points for nailing down the genetics. For example maybe when a particular region of certain genes is copied too many times a child develops AIS. Or too few times. Or some complex combination of different regions being copied different times.

The point is this is so complex that it may never be worked out beyond "its all genetic." Strong evidence that it is all genetic is the common worldwide AIS rate which also serves to remind folks how we are all more similar than we are different. Humans are extremely well mixed as a species. We are all African.

[jrnyc]

personally, just my opinion..i find speculation on causes to be a little bit funny and a little bit sad...

i have scoli...bad...my sisters do not...
i feel no need to speculate...i think much is genetic...but i was the lucky one out of the three of us to have scoli...
it doesnt matter to me if i wore glasses, because all three of us did...or that i had bladder infections...i was born with a small urethra...none has to do with the scoli i deal with now...

i feel badly for anyone spending any time puzzling over the causes...but that's just me...
the cause is of no matter to me now...just the "fix"

and that whole thing about bacteria?
i have friends in CT who practically grew up living in the woods, with bacteria everywhere around them...none have scoli!

Vit D? i was told by my CA hormone doctor to take it all year, especially in winter, as i live in northeast...but i dont believe the lack of it causes scoli ...my sisters grew up in northeast too...no scoli...

i never liked sports...but studied dance as a kid...that was my exercise...my sisters didn't like sports...but they don't have scoli

this is just my outlook...thank goodness for America, where people can believe whatever they want to about whatever they want to...and say so...

these are just my beliefs...not to insist they are any more correct than any one else's...

happy holidays...
jess...and Sparky
http://i1085.photobucket.com/albums/j439/jrrnyc/sparkydoggles_S.jpg?t=1290644536

[Sherie]

I think parents are always looking for answers, and why not? We may never find out exactly what causes AIS, but if nobody questions it, there will never be answers. There is no reason to feel badly for anyone wondering about the causes, I'm sure almost everyone on this forum have given some thought to this subject but I don't think anyone is sitting around day after day wasting their lives away thinking about it! I'm certainly not.

I feel certain there's a familial link in my family, I have 3 immediate family members with skeletal abnormalities and they all share the same physique, I don't think that's coincidence. I also don't know if there are other systemic effects to be looking for, such as in the case of Marfan's. It would be nice to know for that reason especially since my daughter is the one who is most affected by this.

[Elisa]

I think parents are always looking for answers, and why not? We may never find out exactly what causes AIS, but if nobody questions it, there will never be answers. There is no reason to feel badly for anyone wondering about the causes, I'm sure almost everyone on this forum have given some thought to this subject but I don't think anyone is sitting around day after day wasting their lives away thinking about it! I'm certainly not.]

That's how I feel Sherie, just b/c we don't know the answers to something doesn't mean we can't wonder about what caused it. I think it's a natural process to question things especially when the diagnosis is new and especially when it's happening to our child. Doesn't mean I/we're sitting around all day wondering and worrying b/c I know I'm certainly not doing that. I have a family to care for, work part time, take care of three (four if you count the neighbour's) cat and seven chinchillas. Maybe those who have been living with scoliosis for many years are past the point of wondering what caused it and just accept it. I'm not there yet. I do accept it, quite well actually compared to others that are: "OMG why me!?" I am still very curious about it all and find the whole subject fascinating so I keep pondering.

It's Monday again... still waiting for 'the call'.

[hdugger]

As an ex-medical researcher, I'm shocked to learn there's anyone who *doesn't* spend all their time figuring out what causes various diseases. Honestly, it's the most fascinating thing in the world. :)

More seriously, as someone who'd like to keep their kid from progressing into the surgical range, I also need to understand the cause (as best I can) in order to figure out what we can do to counterbalance it.

As to the ideas about cause, it's what I was saying earlier about different eitiologies. Different people have scoliosis caused by different things. Extreme Vitamin D deficiency is actually one of the few known causes of scoliosis - the link between rickets and scoliosis is solid - so the extrapolation that decreased Vitamin D above the "rickets" stage could predispose to scoliosis is pretty reasonable as well. Not proven, but pretty reasonable. Knowing that won't help people whose scoliosis is causes by Marfan's, for example, but it could well lead someone whose kid has a smaller curve to make sure their vitamin D is reasonable.

That doesn't mean at all that *you* have to look into it, but I feel obligated to both for my son and for other people's children.

[Pooka1]

Heh.

I am routinely shocked much more by other things. For example there is a new Gallup poll out with NON-new findings...

[Pooka1]

As to the ideas about cause, it's what I was saying earlier about different eitiologies. Different people have scoliosis caused by different things. Extreme Vitamin D deficiency is actually one of the few known causes of scoliosis - the link between rickets and scoliosis is solid - so the extrapolation that decreased Vitamin D above the "rickets" stage could predispose to scoliosis is pretty reasonable as well. Not proven, but pretty reasonable. Knowing that won't help people whose scoliosis is causes by Marfan's, for example, but it could well lead someone whose kid has a smaller curve to make sure their vitamin D is reasonable.

Was that included in that list of top models for AIS from that talk last year? I don't recall it.

[hdugger]

Was that included in that list of top models for AIS from that talk last year? I don't recall it.

No, it's not AIS (because the cause is known). It's just scoliosis caused by rickets.

http://www.mayoclinic.com/health/rickets/DS00813/DSECTION=symptoms

And if we can continue to peel off these *known* causes, we can throw everyone with those causes out of the research pool for AIS and actually figure out the *unknown* causes.

[Pooka1]

Yes but I thought you were trying to extrapolate from the extreme case of frank Ricketts scoliosis to suggesting that AIS might be just a heretofore unrecognized milder form of Vitamin D deficiency induced scoliosis.

[hdugger]

No, not that AIS is caused by it. But that *some cases* of AIS are caused by it. Just as some are caused by Marfan's or tumors.

For the Vitamin D, it's what I was saying about the perfect storm. Scrawny kid + low vitamin D + asymmetric loading may be one cause of AIS. I don't know if it's on THE list, but it's certainly on MY list.

[Sherie]

I'm not there yet. I do accept it, quite well actually compared to others that are: "OMG why me!?" I am still very curious about it all and find the whole subject fascinating so I keep pondering.

Same here, I never thought, "why my daughter, why us" because I figured out a long time ago that bad things happen to good people all the time, it's a fact of life. I would love to have an answer in my lifetime as to why my daughter developed this to such an extreme.

[hdugger]

So, apparently, the Chinese are interested in the link between Vitamin D, calcium, and scoliosis.

http://clinicaltrialsfeeds.org/clinical-trials/show/NCT01103115

American researchers - not so much. Not sure why that would be.

[jrnyc]

i meant, that in some, or many, people's lives, pondering cause has moved on to pondering "fix"...i am speaking of people pondering the cause of their own scoli...those who have had it for 20, 30 years...

and i would think an EXTREME case of lack of Vit D could cause several things...i didn't think you were referring to severe extreme to the point of rickets...i thought that went out in the days after the sailors figured out what was going wrong on those long trips...

as i said, i was expressing my opinion, and my opinion only...not that my thoughts about it are better or worse than those of others....

i wish more people...especially professionals...were pondering "fixes"...because i honestly believe that in 50 or 75 or 100 years from now, things will be SOOOOOO advanced, they will look back on fusion as the dark ages! all surgeries seem to evolve...why wouldn't scoli surgery...?!

happy holidays...
jess

[hdugger]

and i would think an EXTREME case of lack of Vit D could cause several things...i didn't think you were referring to severe extreme to the point of rickets...i thought that went out in the days after the sailors figured out what was going wrong on those long trips...

Yeah, I'm extrapolating backwards from the extreme case (where vitamin D is so low that the bones just buckle under no force) and thinking that just very low vitamin D could make the bones malleable enough that they deformed under strong asymmetrical force. Again, this wouldn't explain all or even most AIS cases, but I think it's worth considering as a cause for some.

(I think sailors got scurvy, not rickets, from the lack of vitamin C. Rickets, interestingly, is having a resurgence, possibly due to sun block. Or at least, so this source says - http://findarticles.com/p/news-articles/daily-mail-london-england-the/mi_8002/is_2010_Sept_13/rickets-shun-sun-bone-disease/ai_n55194973/)

[jrnyc]

oh OK...i thought they got both...

but if sun screen...that we are berated to use, causes anything negative like this, that would be really...well, just REALLY!!

darned if you do, darned if you dont...no sun screen, cancer...sunscreen, rickets...no way to win!

also read that low levels of calcium can cause rickets, too...

i worked with lots of special ed kids in 25 years in NYC
i know that, as far as pervasive developmental disorders, those with Rett Syndrome are known to have scoliosis

jess

[Pooka1]

American researchers - not so much. Not sure why that would be.

Well, according to one player in this little sandbox, at least Ogilvie and his ilk are barking up the wrong tree because they are just too dumb. That player offered to save Ogilvie 20 years of wasted research if he would only listen to a lay parent who doesn't have a grasp of the issues whatsoever.

That's one opinion.

My opinion is that the research is all over the map because the condition is so heterogeneous and so complex and so variable that researchers can't even narrow it down past genetics to metabolic or nervous system or whatever. So we see funded research on completely independent hypotheses. It sounds remarkable to me but I'm not in the medical research field and this amount of scatter might be usual.

I think it is fair to suggest that an empirical definitive solution will be adduced before they figure out the etiology. And I think it will be a non-fusion surgery that straightens and stabilizes the spine without giving up flexibility. I don't think something like a pill will be doing the trick here but I have no idea.

[hdugger]

but if sun screen...that we are berated to use, causes anything negative like this, that would be really...well, just REALLY!!

darned if you do, darned if you dont...no sun screen, cancer...sunscreen, rickets...no way to win!

Yes, exactly. I've found a few more cautions about too much sun screen leading to possible bone problems, including scoliosis, so I think the warning is real.

We always ignored the warning to stay out of the sun, btw. I think the only tiime I put sunscreen on my kid was when he was going to be at the beach for hours. But, when we moved to the northern latitudes, there just wasn't any way to get enough sun.

Interestingly, since he's been at college in a sunny climate, his curve has stopped progressing (and maybe even reduced a little bit). That's easily confounded with his age/growth spurt, but I do find it interesting.

[livingtwisted]

Just throwing in my own experience...

My parents started both my sister and I on calcium supplements at least a few years before we got our periods. And we had a very nutritious diet otherwise. But I do remember being told that I was mildly anemic at a routine physical when I was a teen -- not sure how iron factors in, if at all.

I think I probably got the usual amount of sun exposure that most kids get. We weren't in a tropical climate, but I played outside most days in the summer without sunblock, unless on the beach. Although, when I was maybe 6 or 7 I was very sensitive to the sun and would have to wear long t-shirts at the beach to avoid heat rash.

I think someone also mentioned a reaction to a vaccine. I got very sick from one of my first shots as a baby, not sure which one it was.

[jrnyc]

i always avoided the sun...my mother, who had beautiful porcelain skin, warned me early about what sun does to skin...

but i didn't know to take Vit D until a few years ago, when i started using a hormone doctor in CA...been taking the stuff 12 months a year ever since....

i wish i'd known to take calcium years earlier than when i started...i don't know if that would have prevented my current osteopenia...but i am Caucasian, thin, small boned, etc...all the markers...i do know some who took calcium younger, exercised, and still got osteo! very genetic....

jess

[Elisa]

I've never been one for sunscreen and it does actually get quite hot up here in July/August. Maybe not as hot as a lot of you southerners are used to but fairly hot by our standards. This summer it got up to the high 30C and the summer before that it got up to 40C (sorry, I'm really bad at converting to F) with the humidity and wow was that ever unpleasant b/c none of us have air conditioners. My poor chinchillas had to have fans blowing in their room to keep the air cool as well as they had chilled tiles in their cages along with frozen water bottles. It did help that their room is downstairs and faces north.

My son stayed inside throughout the whole summer and I wish I had forced him out of his bat cave and exposed him to sun rays but he just absolutely hated the sun and heat and his skin was so white. We at least should have been giving him vitamin D back then but we didn't know anything about it. He's on it now but it's not going to do anything about his crooked spine but maybe it will help his bones anyway somehow. I should probably be adding some calcium as well. I've just never been one to take all kinds of vitamins and supplements but I suppose some of them do do a body good. Hindsight is always 20/20 I guess.