Question for adults w/ SB or parents of older children with SB

[LillyPie]

Lilly has always had small legs and feet. She is very short for her age. Her legs and feet are small compared to her upper body, I noticed this when she was about 1 year old. My friends 2 year old kids feet are 2 sizes larger than Lillys and Lilly is 3 years older than her. IDK my other 3 kids are all average height my huband is tall, I am 5'5. My questions are ... Will she just be short? Is this an effect of SB? How small will she be at max height? I am also wondering if this also has an affect on her abilty to walk. Is she falling because her feet are small? She does tend to drag one of her feet more than the other too. I am also wondering if the older she gets and heavier she gets if she will need the wheelchair more and more. (we havnt got it yet.. they say itll be a few more weeks) Right now its just for distance stuff. How do I know if she needs it more? I wouldnt want her to use it more than she needs and I also want her to use it if she genuinely needs it.. Or maybe thats denial talking again. I dont want to deprive her of something if she needs it. How do I know if its me or her? I guess that questions is because sometimes I feel like im in denial,, sometimes I feel I over do it. I want to be right in the middle.. with the emotional part of it ya know? Or am I just talking non sense?? AAAAAHHHHHH SO many questions.... SORRY

[bcain]

:11a:I wonder too about the same things you mentioned. I hope my daughter won't need braces again, but I know it's very possible. Uncertainty is our road, we have to take it a little at a time. I think if my child expressed a need for a wheelchair I'd just get it. I don't think it's a bad thing anymore, most users here on this site say it's a tool for them. They use it when they need it, it's freeing not confining.
As for Lilly's height, I'm tending to think SB has caused an incomplete formation of the lower extremities, muscle and bone alike. With less innervation those areas don't develop normally.

[Dodger67]

I have the leg length of a 8-10 year old. My armspan is 181cm (6ft) but my height is guestimated around 150cm. (Armspan normally equals height.)

[LillyPie]

Dodger; Do you think that with smaller legs and feet that its harder to be ambulatory?

[LisaJoy]

Short stature is common with sb, although the specific reasons vary from person to person. My wingspan is 5'3", but I'm barely 4'9" tall. In my case, however, it is my trunk that is abnormally short, because of the deformities of my spine.

I understand your conflictedness about the wheelchair -- you don't want her to lose what walking ability she has by relying too much on the wheelchair. There's good reason to encourage her to walk as much as she can -- even if she gradually uses the wheelchair more, the more she walks while she's young, the stronger her bones will be.

Does she wear AFOs? If not, maybe that needs to be your next step.

[LillyPie]

LisaJoy; Yes she has AFO's, they are ankle height though. She used to have some that were shin height, until about a year ago. I'm thinking she might beed the shin height because the muscle in the bottom half of her legs below her knees. She has VERY little muscle there especially on the inside of her lower leg. She had physical therapy yesterday and her little thighs are sore.
about the wheelchair your right, I dont want her to use it for things she can do, because I dont want her to lose the abilties she does have.

[Mustang Sal]

I'm might be wrong, but I don't think i've ever heard of someone with SB being very tall. I agree with Lisa - short stature and SB seem to go hand in hand. My armspan is about 5'6, but i'm just a shade over 5ft. But hey, at least I never have to turn trousers up as my legs are comparatively longer than my stunted torso :)

Besides, good things come in small packages - my mother always told me that :p

[Lifeisgood]

I think everyone is different. My neurosurgeon did not think that I would make it past 5'3, but he was wrong. I am 5'6. My left leg however is shorter and smaller than my right.

I wish I could help you more LillyPie!

[misty]

I'm 4'9". The rest of my family is at least average height or above. In fact, I have an uncle on my dad's side that is almost 7 feet tall. My feet are also small in comparison to the rest of me.

[Nettie]

I have a friend who's daughter couldn't walk until quite late, and then she struggled with balancing issues for years. She doesn't have SB. But the doctor told her it's because her daughter had such small feet! And he must've been right, because once her feet started to grow a bit, she got surer on her feet and stopped falling so much. So you may be right, that your daughter's small feet may play a role in her walking ability.

[NerdaliciouS]

I think as far as the height goes - it's genetic. Maybe with a little role of the SB.
I'm 6'1 :eek: by arm span. If I'm in braces, and I straighten myself as much as possible, around 5'11, give or take. And if I'm hurting and not wearing them, I'm probably around 5'5, lol. I'm also now wondering if most of us drag one foot more than the other...
Honestly, I guess all you can really do is wait and see what happens. Which is dreadful to hear, but everyone's different. And about not knowing if she needs this or that, I think she'll make it kind of obvious. I'm not trying to sound mean, though! :( But sometimes kids'll do stuff and you just KNOW they need _____. Did that make sense? :o Cause it's kind of difficult to say. You don't want to push them too hard, but you don't wanna give them the easy route either. And if she walks as much as she can now, I think she'll thank you in the longrun. :)

P.S. She's a cutie. :)

[Gymp]

I'm 5ft. 5in. tall with a wingspan of 5 ft. 11in. I have very very thin legs from the knees down,in essence I lack calf muscles but I'm still walking alright.

Gymp

[angel]

Hey Lilliepie,

I can just second what has already been said. i am 4 foot 5ish and my legs are much smaller than the rest of my body. Below my knees there is no muscle tone at all and i wear a size 1 in childrens shoes (thank god for mary kate and ashley or I would have no shoes!) My armspan is between 5'9 and 5'10 so i am almost dragging my knuckles on the ground lol. I have hands that are as big as any man's I have ever met. I would have been a big girl if it wern't for the SB. And I believe that most of us do have some stunted growth as a result of it.
As far as the wheelchair I think it is very important to encourage your child to walk when she can. I have always done that myself because I am fortunate enough to have the option. Not everyone does and I just can't let that go. I do use my chair when I need to. I didn't for a very long time and missed out on a lot of fun because I was struggling to keep up with everyone and not enjoying myself. It boils down to if you don't use it you will loose it. Just listen to her she will help you know what to do.

Angel

[Alvy]

Hmmm..I'm about 174cm tall which is quite tall for a female I suppose? My left foot is smaller than my right foot, left calf muscles wasted as compared to my right. I'm walking alright with some limping though.

With regards to her small legs, maybe it's due to the level of lesion or something, I think the higher up the lesion, the smaller your legs as the nerves/muscles will be affected and hence wasted. Do encourage her to walk more whenever possible, try building up muscles in the lower limbs and upper arms. Upper arms muscles will help IF she should require the wheelchair/crutches to assist her next time when she's older.

But I think height depends on every individual person, everyone's different to start off with. But yes, SB may very well play a part in short structures.

The dragging of foot, could very well be due to drop foot or that one limb is shorter than the other which is possible. My right leg is longer than my left. Sometimes I tend to drag my weaker leg around I guess? Or at least I did when I was younger. Basically I did that because it was tiring to lift up the left leg higher than the slightly normal right leg, I just thought dragging it around was much easier. I obviously don't do that anymore but sometimes I do that without knowing especially when I walk around for too long.

[Lifeisgood]

Alvy, I think you make a really good point about the level of lesion, and I am guessing about whether or not it was an open or closed lesion might make a difference as well. I am curious if we were to do a little poll, what we would find. (Ah, my old research background is coming out again!)

I am L5/S1 and mine was closed. 5'6.

I have also found that when I am tired my limp is much more pronounced. People will actually stop me and ask if I sprained my ankle. When I have good energy and really concentrate I can walk without a limp. I think from now on when one of my doctors asks me to walk to observe my gait, I am going to ask them if they want to see my "show walk" where I concentrate and can do it fine or my "status quo walk" where I just walk how I walk out in public. My "status quo walk" takes up much less energy and concentration, but probably is not so good for me. Kind of that "use it or lose it" thing that everyone is talking about.

[dahliafaolan]

I'm about 4 ft 7 ish on my long side. We never bother to measure the short side so I'm not really sure. But I think my height is a combination of several factors. One being that my mother's family are all short people. The tallest female blood relative is about 5'3"-5'5" but most of the rest of the family averages about 5'-5'1". Even my grandfather was a short man, being able to look my 5' mother directly in the eye without moving his head. But it didn't help that I had my rods put in when I was less than 10 years old (I gained 4 inches in height through that surgery, but I don't think I've grown so much as 5 inches since then.) But then again, I've always been smaller than the other people my age. I've always been the shortest person in my class. Never held me back though. My ex boyfriend used to tell me that that was one of the things that made him fall in love with me, seeing me tell off a guy that was 6'5" and not be the least bit scared. My mom's always called me her little chihuahua or bantam rooster because I'll take on people that are twice my size and think I can win. lol

As for my legs, I've got absolutely no muscle tone from the knees down, but my thighs look pretty normal, if you ignore the fact that my left is shorter and fatter than my right.

[LillyPie]

Lilly is partial l4 through s1... (L4 vertibrae is partialy there, L5 and S1 vertebrae are missing)... Her lesion was open with spinal cord and meninges protruding.
So hey that brings me to a question... is she L4-S1 or L5-S1? I have always just said L5....

[Lifeisgood]

Good question! I cannot say I know the answer to that one. I believe my lesion extends further down the sacrum (I think to S2 or S3), but it has always been referred to as L5/S1, perhaps because that is the highest point? I'll have to ask about that one of these days. They removed some vertebrae during my original surgery.

[Dodger67]

My lesion is at L3 but I have some loss of function at L2. From L3 down I have no functioning nerves at all even though the only malformed vertebra is L3.
I have also never had any tethering symptoms (yet!).

[leigh828]

Great questions! Grey's feet are SO tiny! I always just assumed that it was because of the SB. I was talking with one of his therapists the other day and she said that not only is it from lack of muscle tone in his feet and lower leg but also due to the poor circulation. His poor little feet are ALWAYS cold. He is almost a year old and still fits into 0-6 months socks. He wears a size 4 but that is with his AFOs.

[Alvy]

I've been hospitalized yet again for another episode of UTI. Got bored and so, I chanced upon a book titled "Living With Spina Bifida" at some charitable organization in the hospital. I borrowed the book and read it...I don't know if I'm allowed to do this but here's a section of it. I hope it helps to answer some questions you have in mind.

"Short stature is common in children with spina bifida and is probably caused by many factors. Eighty percent of those with lesions L3 or higher have short stature (recumbent length at less than the third percentile), compared with only 40 percent of those with lower lesions. Undoubtedly, small lower limbs, spinal deformities, and scoliosis contribute to short stature. Scoliosis makes measurement of growth velocity difficult in these children, and many advocate arm span as the best measurement of their linear growth. Many older children have early and rapidly progressing puberty, which leads to advancement of bone age and further limitation of growth potential.....For ambulatory children who are acutely aware of their small stature, growth hormone therapy may well have a role......Until further evidence is available, growth hormone therapy should not be used indiscriminately in children with spina bifida and short stature. Longitudinal data on larger numbers of children are needed before the safety of such therapy in this population is established." (Adrian Sandler, M.D.)

[Gymp]

Thanks for that Alvy!
I googled the book title and actually found the entire book on line...through "Google Books".

Here's the link to it for those here who are interested in giving it a read...

http://books.google.ca/books?id=SScROpQ6v3sC&dq=Living+With+Spina+Bifida&printsec=frontcover&source=bl&ots=HZJ21nprf2&sig=yc4VSTVbLjnjkbg9uyxVyU2i5lA&hl=en&ei=sXNMS9O8FsqWtgfkx9ThDA&sa=X&oi=book_result&ct=result&resnum=2&ved=0CA8Q6AEwAQ#v=onepage&q=&f=false

Gymp

[Dodger67]

I don't really want to rain on your parade but that book has been advertised right here on this page for years! - just look at the left margin of this screen.

[Gymp]

I don't really want to rain on your parade but that book has been advertised right here on this page for years! - just look at the left margin of this screen.

LOL,Not raining on my parade at all Roger.I don't see those adverts. after I sign in,I'm using "Default Style" as a forum skin and all the adverts disappear after I've logged in.I had to log out to double check.

I did click on the link in the advert and it takes you to Amazon where you can read a chapter of the book for free,a preview I think? The link I posted you can read the whole book for nothing on the web. (Maybe just in Canada though,dunno?)

Gymp

[LisaJoy]

Actually, I don't think the Google books version is the full thing -- it appears to be, but there's a note at the bottom indicating that only portions are presented. That's because it's still under copyright. But there are still significant chunks there.

Alvy, you have been a model for proper quotation & citation! You've used a small excerpt, indicated you were quoting, and gave the author and source.
(I've just been working on my beginning of the semester lecture on plagiarism!)

[Gymp]

OOPS....and there I thought I found the whole thing.
Ratz!

Gymp

[Lifeisgood]

Kudos on the quotations Alvy, but the bit about being back in the hospital is so not cool! I hope you feel better soon and that this does not put things off. Keep us posted.

[Alvy]

The bit about citations, I got that drilled in during a module. Nearly died.

But uh yea, that book's pretty good I suppose. Still reading it. Yea there's an ad on the site but some might not wanna buy it, I thought quoting what's relavant would be useful since not everyone has the book! Heh.

Lifeisgood - I think it sucks more to have a new IV plug set every day, and they take numerous tries to get one in. Not so much of the hospital stay actually. =)

[LillyPie]

Lilly is partial l4 through s1... (L4 vertibrae is partialy there, L5 and S1 vertebrae are missing)... Her lesion was open with spinal cord and meninges protruding.
So hey that brings me to a question... is she L4-S1 or L5-S1? I have always just said L5....

I was looking through some of my old posts, I say in one of them that I was at SB clinic and that the pediatrician there that specializes in SB said that L3 was partial and L-4 and down was affected. Anyways just wanted to correct myself, but that makes sense anyways, since I think shes been affected from the L4 point. I get confused ... during pregnancy it was L5 after she was born it was L4 ... sheesh sometimes I am so lost ... aaaah so much stuff to remember

[dahliafaolan]

The bit about citations, I got that drilled in during a module. Nearly died.

But uh yea, that book's pretty good I suppose. Still reading it. Yea there's an ad on the site but some might not wanna buy it, I thought quoting what's relavant would be useful since not everyone has the book! Heh.

Lifeisgood - I think it sucks more to have a new IV plug set every day, and they take numerous tries to get one in. Not so much of the hospital stay actually. =)

Hey Alvy, have you ever talked to your doctors about getting a port put in? It's a simple outpatient procedure under light anesthetic and you never have to worry about broken veins and even finding a vein. I had mine put in a year last week and I absolutely adore it. I do have to get an injection of heparine in the port once every three months but I feel it's well worth it for the peace of mind and convenience.

[Alvy]

Hey Alvy, have you ever talked to your doctors about getting a port put in? It's a simple outpatient procedure under light anesthetic and you never have to worry about broken veins and even finding a vein. I had mine put in a year last week and I absolutely adore it. I do have to get an injection of heparine in the port once every three months but I feel it's well worth it for the peace of mind and convenience.

Hey there!

Hmmm..they don't usually insert a port unless you're under chemo/dialysis or require outpatient parenteral antibiotic therapy. It's either an arterial line or central line I believe?

Now my arms look like that of a cow's print. Bruises all over. The nurses said I look as if I've been abused and I was like: "Yea..by the doctors with a needle. =X"

[friendofsbwoman]

Sorry to hijack the thread

I have the leg length of a 8-10 year old. My armspan is 181cm (6ft) but my height is guestimated around 150cm. (Armspan normally equals height.)

It seems to be that armspan normally slightly exceeds height in europeans/caucasians. Also, on average, women have shorter arms than men of the same height and asians have shorter arms than europenas of the same height. It is even apparent in clothing sleeve lengths. I noticed that my tops from usa or uk (especially) have long sleeve lengths a few cms longer than those of asian brands even though the tops are supposed to be for the same height.
I'm 164cm (5'4.5'') and my armspan is only 160cm (5'3''). Even though my armspan shortage is minor, sleeves of European branded clothing are usually long on me even though they are technically the right size for my height.

[dahliafaolan]

Hey there!

Hmmm..they don't usually insert a port unless you're under chemo/dialysis or require outpatient parenteral antibiotic therapy. It's either an arterial line or central line I believe?

Now my arms look like that of a cow's print. Bruises all over. The nurses said I look as if I've been abused and I was like: "Yea..by the doctors with a needle. =X"

Mine's stuck in my right jugular vein. And normally my doctors would agree with not putting the port except for chemo/dialysis but my doctor got tired of fighting with my veins. I had three cystoscopes and two lithotripsies that had to be reschedule because they couldn't find a decent vein. I have a rule that they have unlimited tries on my feet, but on my upper body they only get three tries because those veins are so precious. For the last one, they wanted to put an IV in my jugular anyway. I told them they could help me get dressed because I was going home. I wouldn't allow them to use my jugular again unless it was a life and death situation. A week later my doctor brought me into his office to discuss a port with me. A week later I had a brand new port. You need to discuss it with your doctor. It might be an option. Show them all your bruises and tell them it needs to stop. The surgery is really easy as surgeries go and then the only maintenance is that you need to have it injected with heparin every one to three months depending on the style of port and depending on your doctor, you can be trained to do the injection yourself. I was offered to be taught, but I'm too freaked out by needles to do it myself.