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Thread: A few questions..

  1. #1
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    Unhappy A few questions..

    Hi there,

    I've been reading through a lot of your posts & I have a few questions, on one post I read someone stating that the specialist can tell for sure from the the x-ray whether it's idiopathic or congenital scoliosis, is this 100% true? Brings me to my next question regarding another post, does it have to be diagnosed congenital in order for the Dr. to request a MRI/CT? I'm curious b/c here's my story... (if you want to know )

    I have a 12 month old daughter who was diagnosed with Idiopathic Scoliosis @ 9 mos. (the curve is upper half of spine to the left which I believe is lumbar right?) so she tilts to the right, it was measured at 26 degrees. We've been to one follow up w/her @ 11 mos. & it measured the same 26 degree so they're sticking with Idiopathic (non-pregressive as of yet) & saying she'll most likely fall into the 90 percentile of cases that resolve "spontaneously". Although I hope that's the case of course I'm going out of my mind with worry that something more is wrong with her. Developmentally she's fine & right on track with where my first born daughter was at this age who is now an extrememly bright & verbal 2 year old. The specialists did several diagnostic type tests on her for reflex, vision, hearing, etc. & she seems to be functioning perfectly normal for a one year old. My concern has developed (since the scoliosis diagnosis of course) but also since then I've noticed a protrusion on the back of her head (about 2-3 inches up from her neck) more toward the left as well (just like the curve) not directly in the middle, kind of like a swell/bump one would get from hitting her head on something really hard which of course she hasn't. I also have noticed that the area of her head above of her ears (temporal lobe area from research of done on it) looks a little protruded too, on both sides, however it's more prominent on her left side as well. I don't know if any Dr.'s or therapists or specialists possibly view these posts or if any of you parents out here maybe be able to have some input or advice for me or maybe something similar to share. Of course I'm going to point this out to my Dr. but her next f/u isn't until she's 15 mos. & I'm going nuts trying to figure out if these protrusions on her head might be some underlying cause of her scoliosis, and also she's not walking yet which is concerning me even though she just turned a year on 9/4. I feel bad for scrutinizing her developements since we found this out but I'm just concerned, my other daughter was walking a week before her first birthday. She's moving around okay while holding on to furniture & she pulls herself up & can balance not holding on to anything, but her legs aren't incredibly strong at this point will still give out pretty quick & she can't sit on stand without help from someone or something & she's very stumbly while having her hands held & walking or when walking w/her push toy walker. Am I being too overly critical and/or paranoid?? I know I just need to "wait it out" until time goes by & we are able to know more & see if/when she starts walking, it would just help if I got some other kind of input or advice.. do you think my Dr. will request an MRI/CT upon hearing about the protrusions, even though he's diagnosed it idiopathic & not congenital? I will if not, I would like it looked into sooner (like tomorrow would be nice) then later. Every congenital issues (such as sydromes or birth defects) that I've read about possibly causing protrusions/abnormalities/malformations on the head in addition to scoliosis don't seem to apply to her in any other way, in addition to that I had an extremely healthy pregnancy & delivery & everything aside from the above mentioned is progressing normal. My husband isn't too interestd in talking about this anymore or having anything to do with researching all these scenarios when my Dr. is telling us there's a 90% chance she'll be just fine & her back will straighten out, I just can't help but to think these abnormalities on her head means more & it's consuming me with sickening concern & worry . If anyone has anything to share, input or answers to my questions it's greatly appreciated, sorry about the novel but if nothing more it's one more story for everyone else to relate to, I know I'm not the only one feeling this way! Thanks so much.. -MO2

  2. #2
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    Also...

    Should I be receiving or requesting copies of anything?? (X-rays, Dr. notes, etc..)

  3. #3
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    I just PM'd you a few minutes ago, but your daughter should be getting an MRI regardless of the protrusions. All children with scoliosis should be getting an MRI to rule out a tethered spinal cord and to check for anything that may not have shown up on the x-ray. The MRI is usually the first course of action. I have no idea what those protrusions could be, but you should get it checked out if for no other than your peace of mind. My son has this strange bony protrusion on his sternum and of course it freaked me out too (turned out to be nothing).

    Is your daughter being seen by an pediatric orthopedist? I personally recommend you find a doctor that specializes in INFANTILE scoliosis. I travel from VA just to go to the Shriners in PA, because no one around here knows the proper way to treat an infant.

  4. #4
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    Oh, and YES. Get copies of everything. You will have to pay for your x-ray copies most likely, but you definitely want every piece of information you can get your hands on.

  5. #5
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    Welcome MO2,

    First, take a deep breath. There is a lot to research and absorb and process. Scoliosis is rarely an emergency situation, which means you usually have time to do enough research, talk to other parents, interview orthos (or their assistants), etc.

    Second, scoliosis in infants is not a common condition. Scoliosis in infants needs to be taken seriously, by a PEDIATRIC orthopedist who has extensive experience treating children with similar issues. Have you been seeing a pediatric ortho for your daughter? Even if you have, second and third or more opinions never hurts. Your comments lead me to believe you are dealing with someone who is not taking her condition seriously.

    Third, your comments about the lumps and odd findings should be addressed by your pediatrician and then by a pediatric neurosurgeon. This means having a full head and spine MRI to rule out any cause of the scoliosis and lumps. A full head and spine MRI will have to be done under sedation, and will likely take 2+ hours to complete. Not fun, but sometimes necessary.

    You said you were told the scoliosis is idiopathic. I'm assuming they mean there is no bone malformations in the spine. That's a good thing. However, it is still something to be taken seriously.

    Scoliosis alone would not cause developmental delays. Even kids with severe malformations of the bone structure of the spine (like my son) have normal development, as long as there are no other medical conditions contributing to the scoliosis and delays.

    I don't think you are being overly critical or paranoid. You are the parent and you need to be involved in the decision making process for her treatment - whatever that may be. You are entitled to copies of her history and xrays, etc. This will help you in getting second or more opinions. You are your child's best advocate. If you tell us where you live, someone will have a suggestion on who can give you more detailed information about your little one's care. When you do see the ortho again (or another opinion) I suggest writing down questions that are specific to her situation. Write them in priority order in case the doc's time is limited.

    There is a Yahoo group specificly for infantile scoliosis. You may want to find a list serve that has more parents willing to share their experiences.

    You are headed in the right direction. Keep up the good work and keep us posted.
    Carmell
    mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

  6. #6
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    Thank You

    Thanks to you both for your input. I have been looking into this since she was diagnosed, I just haven't really had anyone who knows anything about it to speak with.. so it's helping me get organized for our next course of action.

    Our physician's specialty is Orthopedic Surgery, sub-specialty is spinal deformity, it's the one my pediatrician referred me to @ Children's Hospital here in San Diego (is my location)-- probably after checking our insurance approval list I would assume. The first appt. he said ("good news!") it's not the kind is the progressive rotating kind, that it's just side to side I guess, although to me her body looks a tiny tiny bit twisted & her rib does stick out a little when she's laying on her back, he never mentioned anything about bone malformations on the spine so I think your assumption would be correct.. however I was wishing in both appointments he was more explanatory, just as I have been every since and am now! The 2nd appointment (which was the last one we had) they had a pediatric team (with one main Dr.) come in to diagnostic evaluation on her & her case & confirmed it was an idiopathic case that would most likely resolve & otherwise she seems okay. But we'll go anywhere we're able to drive to ensure she gets the most thorough care, so if anyone has any recommendations (again we're in San Diego, CA.) that would be wonderful!

    We just recently had her 1 year check-up w/her pediatrician but it was before I began noticing this little protrusion on her head, he (apparently) didn't notice anything abnormal either & said everything looks as great as a well visit would & to trust the ortho on their positive outlook on her back. In my heart I know she's making all the right steps toward walking, she has actually taken a few steps on her own while thrusting herself toward my husband, each week is more progressive, I just think because of everything I've read I'm questioning her development & comparing it to her sister's but in all honesty her fine & gross motors skills are exactly where they should be- to date anyway- some babies don't walk for way longer than 12 mos. is what everyone has told me so I'm going to give her another few months before I start worrying.. I would think that a curved back would (possibly) give an infant some delay in full fledged walking? But I will schedule another appt. w/her pediatrician soon since we won't be there again until her next well check-up & hopefully he will give me a direct referral for an MRI, thank you so much for the advice!

    I'm getting questions together & will start a file on her records, thanks to you both for the reassurance!

    I will also check out the yahoo group. I will keep her progress posted too.. thanks again for the info.!!

  7. #7
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    I am VERY surprised they haven't requested an MRI be done. Have they mentioned doing one at all? Did he measure her RVAD? Usually that is how they determine if it will be progressive or not. In my experience, some orthos are not forthcoming at all with info. The first one I saw with Ian didn't even show me his x-rays! He spent all of 5 minutes with us at Ian's initial diagnosis which was totally unacceptable. Needless to say we don't see him anymore.

    It sounds like your daughter's scoliosis is fairly similar to Ian's. It hasn't affected his mobility at all - in fact he was an early walker. However if she had a tethered spinal cord that could affect the mobility in her legs among other things. She really needs to have that MRI to rule it out for sure...she probably doesn't have that, but it still should be checked. I know it's hard not to compare to your other child, but try not to do that. It is not uncommon for kids to not start walking until 15 months or even later sometimes.

    I'd really look into seeing an ortho from Shriners if at all possible.
    Last edited by IansMommy; 09-21-2005 at 09:38 AM.

  8. #8
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    Hi MO2,

    I noticed that you are from the San Diego area. My son is also being treated at Children's Hosp. I am wondering who your ortho doc is? We are seeing Dr. Newton. Also, in reading what you described about the "protrusion" on the back side of your daughters head, maybe try a search on a condition called "torticollis". The only reason I bring this up is b/c I have a cousin who's 11 mo. old baby has been diagnosed with this. What they noticed is that the baby's head started to appear somewhat uneven. Back left side protruded, right side of forehead started to appear somewhat flat, this in turn makes the ears and eyes somewhat uneven. One thing she also noticed is that he would keep tilting his head to one side, even if she changed his position. She also noticed that his development is a little slow. At 11 mos. he is on the verge of crawling. She had a difficult time getting a diagnosis. Her ped doc. kept saying the baby would grow out of it but if it would make her feel better she should go see a neurosurgeon, which is exactly what she did. He now is wearing a cranial band (helmet) to help "reshape" his head and she has been taking him to a PT which she said is helping as he does not tilt his head as he used to. I think she said a possible cause for this could be related to the position of the baby in the womb and how it affects the neck muscles (he was breech, she ended up having and emergency C-section). When she told me about this a few weeks ago, I wondered if it could in any way be related to scoli in young children? In an 8/26 article in the No. Co. Times, this condition can lead to learning disabilities, orthopedic problems and vision issues. It is a condition that is becoming more common in babies. If you want to look it up, the website is www.infant-torticollis.org. Hope this was helpful.
    Please keep me posted.

    Renee
    Last edited by flowerpower; 09-21-2005 at 10:38 AM.

  9. #9
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    Renee,

    I seem to recall reading somewhere that it can be associated with Scoliosis. I have two friends who have babies with tortocollis (no scoli though) and PT really seems to have helped.

  10. #10
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    Sep 2005
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    Hi IansMonny & Renee,

    I'm surprised no MRI request now too, no he hasn't mentioned it at all, who knows.. maybe he's waiting until the next time he sees her. I don't know about the RVAD either, we haven't spoke about it at all so I'm not sure if he did. Would he maybe not if the curve is side to side & non rotational? Not sure but will be looking into a measurement for that whether it be the next appt. w/him or another Dr. which will most likely be the case, I will consider Shriners too thank you, I want to make sure I have all her paperwork (x-rays, Dr. notes etc..) in order before I do and maybe even get into to have the MRI done.

    I've considered the tethered spinal cord too but thought he might see the bony protrusion or whatever on the spine in the x-ray, and she doesn't really have any other visible signs on her back or TB but I've also read case go unnoticed through to adulthood too so who knows, it's still a possibility I guess, I know the MRI will help to find out. But I appreciate any thoughts or ideas for me to look into in case I haven't yet (which I don't know whether that's even possible!) I've actually been using a site www.wrongdiagnosis.com quite a bit, maybe you've heard of it. It's an INCREDIBLE wealth of information & relation of different symptoms, it's really helped (but also worried) me alot.. Anyone searching for answers to health concerns should know about this site, it's great!

    Renee, what a coincidence! Dr. Newton is our Dr. as well, how old is your son? What is his situation? I'll look to see if I can find other posts from you on it. I looked into your suggestion too, I just don't think that's it, she doesn't have the lop sided symptoms of that (head, facial features, etc..) she sure is a cutie pie, everything is straight and even & her head does tilt, she's got great neck/head control just like any normal babe, but it does seem like the protrusion is somehow related/connected too the spine deformity.. I will be relieved just to know what we're facing! Thanks for the input, I'm sure we'll talk more soon!

  11. #11
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    Ian doesn't have any rotation and they measured his RVAD - he has just a simple right thoracic curve. Not all orthos do it unless you ask them to. I had to ask them to measure it at his latest appt since I don't travel to Shriners just for x-rays.

    A tethered spinal cord can't be seen on an x-ray which is why they do the MRI. It can lead to permanent damage in some cases if not treated early enough which is why they usually order the MRI immediately. My son didn't have any of the indicators either, but they still ordered the MRI anyway. Initially the radiologist said it was tethered (talk about a tough week for us), but the pediatric Neurosurgeon looked at the MRI and said it was not tethered.

    Anyway, it sounds like you are doing all the right things and doing your own research which is great!

  12. #12
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    Yeah, I'll plan on requesting that measurement then..

    That's interested they diagnoses your son w/it & then decided it wasn't, I can only imagine what you went through and the ups & downs we have ahead, I'm sure this is just the tip of the ice burg for us. I'm just hoping for the best, she's such a sweet little angel, I hope that I'm over reacting & head abnormality is nothing! Looking @ that wrong diagnosis site & underlying causes of scoliosis I'm thinking like ?! What, tumors?? Arachnoid Cysts?? Syndromes?? Anyway, thanks again for the info..

  13. #13
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    IansMommy

    Also, I just read your post about him sleeping in the swing or carseat & that was the case w/mine too, we had that aquarium swing that swings or cradles, she slept in that until 6 mos. too and I can't help but to wonder if it contributed to a minor curve or something, the Dr.'s didn't seem to think so.

  14. #14
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    You know, on the yahoo group that I belong to, overwhelmingly, a lot (if not most) of us let our kids sleep in the swing/carseat. I know I wonder if it exacerbated his problem...not sure if it caused it, but wouldn't be surprised at all if it made it worse.

  15. #15
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    MO2,

    I am glad you feel torticollis could be ruled out for your daughter. My son is 14 and is going to have a posterior spinal fusion on Dec. 19. As the surgery date approaches, I have been contacting past surgery patients/parents of Dr. Newton's who have had the same surgery that my son is facing in Dec. (posterior spinal fusion w/instrumentation). Everyone I have contacted so far has nothing but wonderful things to say about Dr. Newton, Amy-his nurse and his entire staff. This brings a small amount of relief that I know at least my son will be in good, competent hands. I have found my experience with Dr. Newton so far to be excellent. He is very caring about his patients and will take time not only to talk with parents-he has been good in talking to my son making sure he understands what is going on and what will be done for him, what to expect., etc. Please keep me posted on your daughter. Take care,

    Renee

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