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moosie45
01-11-2006, 12:59 AM
Hello,

I'm new to the NSF and am so glad that I've found this website and forum. I've been reading postings all night and am sitting here crying out of frustration, confusion, sadness for others but out of elation as well that I've finally found some helpful, useful information.

I have a beautiful 9 month old son, Liam who was diagnosed with infantile scoliosis at 4 months. His diagnosis came by accident really - he went to the Ped. for a check-up and the Dr. noticed that his head lag was still pretty bad for a 4 month old, but Liam was born a month early, in the NICU for 3 weeks and has torticollis so I was told not to really be concerned but to have a PT evaluation (Liam was also exhibiting low muscle tone and development in his upper body and hated "tummy time"). So, we went to the physical therapist and she had Liam down to the diaper on his tummy and looked at me and asked, "Does Liam have scoliosis?" I almost died! What?!?!? No one had ever mentioned anything to me about this before - I couldn't believe it!! When she pointed the curve out to me I was then upset that I hadn't noticed it before either. I immediately took Liam to another Ped. the next morning and he sent us for an x-ray with STAT results. Then the phone call came later that day - Liam had a 30 degree thoracic curve. I wanted to die. I cried for days. Then we were told how "rare" this was for an infant, boy to have scoliosis and usually it was associated with some other disorder or syndrome. Great!! How did this happen? Why us? Why my baby?! I felt like I was in a twilight-zone!

Liam saw an orthopaedic surgeon in Sept. 2005 at Children's Hospital of Michigan and we were very pleased with what he had to say. We were told that 70% of infants grow out of this on their own and we would just have to wait and see what happend - come back in 4 months for another x-ray. In the meantime we were told to have boney abnormalities ruled out, syrinx, tethering of the spinal cord, see a geneticist, neurologist, neurourgeon, etc. From Sept. to Dec. we've been to every specialist under the sun to have "things" ruled out and thankfully everything has come back ok. No syndromes, disorders, tumors, boney abnormalities, hemi-vertebrae, genetic issues (even though 2 family members on my husband's side have scoliosis - we were told that's not significant enough). We were just going to have to deal with the sole issue of scoliosis. Well, Liam continued on with PT and we thought evreything was getting better.........

Liam saw another ortho. surgeon on Dec. 23 (the first Dr. left the state) and I was expecting to hear that the curve had gotten better or at least stayed the same. Unfortunately, Liam's curve progressed from 30 degrees to 100 degrees in just 3 months. I cried for 2 hours - couldn't even leave the office. Then the Dr. started talking about how she wanted to put Liam in traction/halo in early Spring an then do surgery to place a rod soon there after. Oh my God!!!!!!!! I can't even think straight!!!! I don't know what to do - I know I want another opinion but don't know where or with whom. This is where I NEED HELP PLEASE!!

I'm sorry for writing a novel here, but it's just so invigorating to have others to talk to that are experiencing some of the same things. Please, I need all the info. I can get. I'm willing to take Liam where ever I need to go - I just want him to be seen by the best and get the best treatment options available to him. Where is that? Any suggestions? What are my options? Is rod placement the only one? What are the long term effects? We were told Liam would need several surgeries from now until he's about 8 to keep replacing the rods as he grows and then are around 8 or so they would fuse his spine. I've also heard about a procedure called VEPTR (titanium rib placement) - anyone heard of that? Is Liam a candidate?

I know I'm asking a million things here, sorry! I'm just so overwhelmed. If anyone, anywhere has any suggestions or where I should start I would really appreciate it, THANK YOU!!!!!!!!!! I'm sooooo desperate and have a small window of about 3-4 months to work with. Liam's lungs are being conpressed and he's already been hospitalized twice with pneumonia. I know something has to be done - but what's best for my baby?

Thank you to anyone and everyone that can share some info., suggest Dr.'s, procedures, insights, hugs even :) - it would be greatly, greatly appreciated. Please feel free to e-mail me at moosie45@hotmail.com. Thanks again and God Bless all of you!! :)

Jennifer - Liam's really concerned Mommy

Carmell
01-11-2006, 01:22 AM
Hi Jennifer,

I'm sending you an email as soon as I finish here. I have a son, Braydon (age 10yrs old) who was born with congenital scoliosis. He has had spinal fusion (at age 11 months) and is also a VEPTR patient (implants done at age 6). I have lots of thoughts for you. My biggest suggestion is to take a deep breath and call to make an appointment with a PEDIATRIC ortho who specializes in treating infants with idiopathic scoliosis. There are two (maybe more, but I'm unaware of them) hospitals in the USA that do serial casting to treat idiopathic scoliosis in infants. Those two hospitals are Shriners in Erie, PA and Shriners in SLC, Utah. The Shriners in SLC has also very recently been approved to do VEPTR surgeries. Other docs I would trust my child's life to include Dr. Emans in Boston, Dr. Betz at Shriners in Philly, Dr. John Smith at Primary Childrens Medical Center in SLC. There are others, but these guys have treated MANY infants with similar situations. Also, there is a great listserve specifically for parents who have infants with idiopathic scoliosis. Its a yahoo group called infantile_scoliosis. You can do a group search for that. I'll write more later.

My best!

mom2cole
01-11-2006, 01:39 AM
Wow Jennifer- I was so touched and overwhelmed by your situation. I can somewhat relate. My son was born with congenital scoliosis and it got to be way over 100 degrees by the time he was 18 months old so he had his first fusion surgery at that time as it also was affecting his lungs (and heart). This was years ago as he is now 11 yrs old and has had many more back surgeries-next wk he will be having another back surgery too. I just wanted to say I was astounded by the suggestion of halo traction at such a young age, my son did have this done but at 5 yrs old and wore the halo for 3 months.

I concurr wholeheartedly with Carmell, I already know her from another board and she is very knowlegable in this (her son Braydon and my son Cole have many similar stuff with there congenital scoli). Take a deep breath and get second, 3rd or whatever it takes opinions. The Dr's that Carmell mentioned are all wonderful. We live in sSouthern CA and go to the Childrens Hosp in LA. Cole has a rod very similar to the Veptr and that is what will be expanded next wk along with bending of rod cause now he is developing a kyphosis curve worse then previously was.

I too was just in shock at the info given to me for my beautiful baby boy. I was a first time mom and that is alot to handle so I really feel for you. You are definitely on the right track with doing research online and finding this site. I did not have the advantage of internet 10 yrs ago to do research and it has been wonderful for us now.

Good luck and try to take one day at a time.
Stacey

Celia
01-11-2006, 11:04 AM
Jennifer,

First I would like to give you a GREAT BIG CYBER HUG, I think you really need one right now ! It's very unusual for a curve to progress that much in a such a short period of time, add to the fact that your little boy is not even walking yet. Given the size of his curve, serial casting may just be enough to delay the inevitable, but then these children never cease to amaze us
I'm so sorry that this happened to you, but hopefully things will improve and get better. :)

mariahmarieinpa
01-16-2006, 11:36 AM
Hello Jennifer,

I tried to E-mail you at your hotmail address. Have you gotton anywhere with the serial casting research? I'm not sure if Michigan has any facilities who offer this service? From my understanding it is very successful - from 80-90%. I was told that Shriners here in Erie, PA & Shriners of SLC, Utah offer the serial casting. I really pray that there are other options for you and Liam other than surgery at such a very young age. Mariah's curve is at 45 and I was told they would not attempt surgery (if casting fails) until she is about 7 or 8. I just found out last night there is a family that comes from Texas to have their child casted. Please stay it touch and let me know what you find out.
My prayers are with you and Liam.
God Bless
Linda & Mariah

Tiffany S.
01-25-2006, 09:07 PM
Hello Jennifer,
I can really feel for you. I just found this sight and also have been crying in fear and relief. I can not answer your questions but am glad to see you have some good people already trying to help.

I first saw my son walking with a tilt at age 11mo. I then striped him down to look at his back and saw a curve. I was so shocked that I had not noticed before! He had x-rays right away that confirmed scoliosis. I did not know enough to ask the degree. I have since deduced that it was between 10-20 degrees. That was 6 mos ago; I can feel that it is worse now and maybe twisting inward a bit. Insurance has finally approved seeing a specialist, we go in February. One odd thing about all this is my son has an identical twin brother who is fine no curve at all and is actually taller and heavier.

Iím sorry to say so much about me when I canít help you. Itís just a blessing to find someone who might understand my worries. You have my best wishes.
Sincerely,
Tiffany
Mama to 5 boys ages 12, 9, 4, 20mos, and 20 mos. :)

IansMommy
02-03-2006, 02:22 PM
I am sorry that I am just now seeing your post. He may very well be able to be casted to delay the surgery aspect so that he can grow some more. Shriners in Erie, PA is probably the closest place to you.

I am glad that Carmell has emailed you with info...she really has a wealth of knowledge when it comes to scolioisis and I respect her opinions tremendously.

Feel free to PM me any time if you have any questions or just want to talk. I could relate with a lot of what you wrote. (((HUGS)))

sugs2780
03-24-2006, 12:29 AM
Jennifer
reading your story brought tears to my eyes. it was like you where talking about my own son. his ped first noticed the problem at around 4 months and sent us to get him checked by a supposed specialist who said that it was just a normal groth problem and that he would grow out of it. im ashamed to admit that i didn't get him rechecked till after his first birthday he also had a cleft pallete so we where dealing with that.....and his surgery for it. we saw a ortho spec. and he diagnoised scoli. at first they tried a brace and all sorts of tests an mri and echo cardiogram ......ect. and after almost 2 years and no real steps forward i took him for a secound oppinion . by then khyler had a 95 curve and he had major pressure on his lungs the doctors said he needed traction with the halo and imediate surgery or his quality of life would severly decrese over the next few years.....at the old doctor he never even talked about the degree of curviture i was sooo shocked and confused i cried for days good luck and please let me know about the traction if you go with that and what it's like......
corina

Celia
03-24-2006, 09:43 AM
Hi Corina/Jennifer,

I sent you a private e-mail. Let me know what you think :)

JLHDU
06-07-2006, 07:58 AM
Hello,
I'm new to the NSF and am so glad that I've found this website and forum. I've been reading postings all night and am sitting here crying out of frustration, confusion, sadness for others but out of elation as well that I've finally found some helpful, useful information.

Jennifer,

I hope things are getting better...I stumbled across this website today. My wife and I are feeling many of the same emotions. My 4 y/o (5 in Aug) daughter Hayley was also a premee at 30 weeks 3 days (3.3 lbs). Didn't have any real problems after leaving the NICU until this past year she's been fighting allergies. So after 20 days on antibiotics our ENT sent us to Night-Time Peds to get a chest X-Ray last night. The the doctor didn't notice anything in her lungs but after consulting the on duty radiologist, they concluded that she had "Thoracic Scoliosis". So, today I'm beginning the task of researching what "Thoracic Scoliosis" is. Initially when I heard this, I was devistated for my Hayley...mostly because I had no idea what "Thoracic Scoliosis" was. After reading numerous websites...including this one, my wife and I feel we can now tackle this. I guess our first step is finding a good doctor. I was reading on another link in this forum that a doctor by the name of Paul Sponseller, M.D. practices at Johns Hopkins. I will be making that phone call this morning.

I am just thankful that we were able to catch this early, even if it was by accident. My wife has since spoken with her mother and apparantly it runs in her family.

I don't really have any questions for anyone right now, I guess I just needed to tell someone. I'm gonna wait until I get the initial evaluation for Hopkins before telling the rest of our family, so I kinda know what I'm talking about. We haven't explained it to Hayley yet (not sure that she would even understand yet) and we want to get all the facts before discussing it with her. She is such a strong little girl.

Thanks,

-Jason

desheah
06-07-2006, 01:30 PM
jason,

welcome to the group. my son lucas is 4 1/2 yrs old and has scoliosis. his was found at 18mos. he has been in braces and more recently serial plaster casting with very positive results. i just wanted to reach out and let you know that you aren't alone.

if you have any questions, please post them here. there are many people here that have been in this longer than i have.

i did have one question for you -- were you told how severe the curve was? a degree measurement?

deshea
mom to lucas and ruby
north of boston, ma


Jennifer,

I hope things are getting better...I stumbled across this website today. My wife and I are feeling many of the same emotions. My 4 y/o (5 in Aug) daughter Hayley was also a premee at 30 weeks 3 days (3.3 lbs). Didn't have any real problems after leaving the NICU until this past year she's been fighting allergies. So after 20 days on antibiotics our ENT sent us to Night-Time Peds to get a chest X-Ray last night. The the doctor didn't notice anything in her lungs but after consulting the on duty radiologist, they concluded that she had "Thoracic Scoliosis". So, today I'm beginning the task of researching what "Thoracic Scoliosis" is. Initially when I heard this, I was devistated for my Hayley...mostly because I had no idea what "Thoracic Scoliosis" was. After reading numerous websites...including this one, my wife and I feel we can now tackle this. I guess our first step is finding a good doctor. I was reading on another link in this forum that a doctor by the name of Paul Sponseller, M.D. practices at Johns Hopkins. I will be making that phone call this morning.

I am just thankful that we were able to catch this early, even if it was by accident. My wife has since spoken with her mother and apparantly it runs in her family.

I don't really have any questions for anyone right now, I guess I just needed to tell someone. I'm gonna wait until I get the initial evaluation for Hopkins before telling the rest of our family, so I kinda know what I'm talking about. We haven't explained it to Hayley yet (not sure that she would even understand yet) and we want to get all the facts before discussing it with her. She is such a strong little girl.

Thanks,

-Jason

Carmell
06-07-2006, 01:39 PM
Welcome Jason and family,

I hope you are able to find the answers you need to give your Hayley the best care possible. She is very young to be having scoliosis, so it is important you find a PEDIATRIC orthopedist who has extensive experience in treating children with similar issues that she may have. Hopkins is a great facility for research and other medical issues, but they are not on the up-to-the-minute page with the latest for treating very young children with scoliosis. I would suggest you see Dr. Sponseller AND someone else. There are some great pediatric orthos in your area who have the latest information on scoliosis treatment. The more opinions you get, the more informed you will be. Its our job (as parents) to choose the right recommendation for our children. Not an easy thing, but it is do-able.

I look forward to hearing how things are going for you and your Hayley (btw, that's the right spelling! My neighbors have a Hayley too!)

IansMommy
06-07-2006, 03:09 PM
Hi Jason,

I know it's tough getting that initial diagnosis. I cried a lot those first few weeks.

Anyway, my son Ian also has thoracic scoliosis. We've been doing the serial casting at the Erie Shriners in PA. Unfortunately, there are only two places in the country that do this, so we have to travel for his treatment, but it has been soooo worth it. Ian was 43 degrees in his first cast and is now between 15-18 degrees when he is out of his cast. We are expecting even more correction with this 4th cast.

Do you know if hers is idiopathic or congenital? Did they give you the degree of curve?

JLHDU
06-07-2006, 03:59 PM
Hi Jason,

I know it's tough getting that initial diagnosis. I cried a lot those first few weeks.

Anyway, my son Ian also has thoracic scoliosis. We've been doing the serial casting at the Erie Shriners in PA. Unfortunately, there are only two places in the country that do this, so we have to travel for his treatment, but it has been soooo worth it. Ian was 43 degrees in his first cast and is now between 15-18 degrees when he is out of his cast. We are expecting even more correction with this 4th cast.

Do you know if hers is idiopathic or congenital? Did they give you the degree of curve?

Thank all of you for your responses! Last night (at midnight) we only had an initial X-Ray looking for pneumonia and the on duty doctor (gen pract) consulted with the on duty radiologist and they only noted "Throacic Scoliosis" and normal lungs. Other than that, we won't know anything until June 26th when we go to Hopkins....maybe I can get into somewhere else before then just to get another opinion...I'll keep you guys updated...thanks again!!!

-Jason, Leanne, Hayley and Drew U.....

Sarwar
09-06-2006, 11:53 PM
We are also new to the NSF and we are so glad that Iwe've found this website and forum. We have a beautiful 3 month little girl , Sarah who was diagnosed with infantile scoliosis before birth; she has other abnormalities such as thedered cord and her one kidney is missing. As you can tell we are very very concerned and feel helpless most of the time.

So far we have seen neurologist, urlologists , geneticisits and orthopedic surgeon at Children's Hospital in Washington DC. We have been reseraching a lot on the Internet and came across VEPTER and Serial Casting for treating scolioses; we would like to know which one is better and hopefully will get some information from such kind people like you in this forum.

-Mina and Tor

Tiffany S.
09-07-2006, 01:02 AM
Hello Mina and Tor,
Iím sorry that youíre going through this, but how wonderful that it was caught at such a young age. Going through all the testing and waiting is the worst! My son had his first x-ray at age 11 months now heís 28 months and is finally done with 90 percent of the preliminary testing. He will have his first surgery (for a tetherdcord and a syrinx) next month. You can see a mini list of his anomalies in my signature.

I to researched casting and vepter. In trying to determine which one you should learn more about you would need to know is the infantile scoliosis idiopathic (no known cause) or congenital (vertebrae anomalies such as fusions or malformations)
Casting seems to only help idiopathic but has a very good reputation for these kids. Congenital is often just watched until (if) surgery is determined to be necessary. There are so many surgical possibilities I really canít begin to guess which one may one day be right for you. I do know that Vepter is considered a last resort and not a first choice for most kids.

Shortly after I found this list I joined two yahoo chat groups that have been invaluable to me over the past year I strongly suggest you join the one that seems right for you or both as some of us have.
http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/?yguid=136818165
First link is for congenital; the second link is for idiopathic / casting.

http://health.groups.yahoo.com/group/infantile_scoliosis/?yguid=136818165

I hope you have an easier year ahead of you. :)
Best wishes,
Tiffany
Mama to 5 beautiful redheaded boys
http://babyhomepages.net/5smurfyboys/index.php
Rory age 13, Evin age 9, Brandel age 5, identical twins Keegan and Conley age 2. Keegan has progressive congenital scoliosis at 54į a hemi vertebra, two fused ribs, several vertebrae fusions, a missing right kidney and a syrinx causing lower limb nerve damage that will require surgery at the end of summer 2006

desheah
09-07-2006, 07:54 AM
hi mina and tor,

welcome! i was curious whether or not your daughter has been ruled out as having congenital scoliosis = fused vertebrae or ribs? since she has both a tethered cord and one kidney missing, it sounds like other organ systems are affected, and i would want to make sure that that is ruled out although it does sound like you have a lot of specialists involved.

in general, veptr was originally used for those children with congenital scoliosis that had gotten to the point that they had thoracic insufficiency syndrome = affected lung function. although now they are doing this for kids who have infantile (idiopathic - no structural anomolies) scoliosis, i believe the child has to fit a very specific criteria to be considered. as for the serial plaster casting (which my son did for 2 yrs), that is solely for infantile scoliosis. if your daughter has infantile scoliosis, then i would be more than happy to discuss casting with you and suggest that you join another forum all about that. if your daughter has congenital, then i will have to defer to others (carmell), and would suggest that you join the veptr discussion board where there are super knowledgable parents to answer your questions.

deshea
mom to lucas (4 1/2 yrs old with infantile scoliosis diagnosed at 18 mos 68o/45o, spinal detethering due to a tight/fatty filum at 22 months, tlso and charleston/bending brace from 18 mos to 2 1/2 yrs old, serial plaster casting from 2 1/2 yrs old until june of this year, now in a spinecor brace at 18o/14o. of course , the future is uncertain, but as always we are laughing and enjoying life!) and ruby (2 yrs old and a handful!)
north of boston, ma

desheah
09-07-2006, 07:55 AM
tiffany,

that is so funny! we must have posted at the same time and almost said the exact same thing . . . :D

deshea

Tiffany S.
09-07-2006, 08:03 PM
Hey Deshea,
That is funny :p Well you can cover the casitng group and I'll take the congenital...Hee Hee Hee