PDA

View Full Version : Hello, I'm new



Morticia
01-05-2006, 01:42 AM
Well I'm new and excited to be here. I need support. My daughter Allana is 13 months old. I had mentioned to her doctor that I thought her back looked "off". He said she was developing and it would probably work itself out. For her 12 month checkup he said he thought she might have a case of scoliosis. We did x-rays and it was confirmed that she had scoliosis. Today we went to a spinal specialist and took more x-rays. The results were, she has a 50 degree curve laying down and a 62 degree curve sitting up!! She has been officially diagnosed with "idiopathic infantile scoliosis". She will have an MRI done to examine the base of her brain stem and will soon be fit for a custom brace. We were told that he wanted to delay surgery as long as possible so were gonna start with a brace that she might have to wear until shes 13-14 or we are looking at an operation if things don't get better fast. My heart is broke and I am looking for any advice to help. I am glad to have found people also dealing with these issues.
thanks-

Alison
01-05-2006, 10:12 AM
I'm just wondering, did they do one of your daughter standing up?? (if I'm not mistaken there's some difference between an x-ray sitting up/laying down and one standing. the best accuracy is from standing up)........ I know there's some difficulty at 13 months getting one standing up........but it is possible, even if they need to hold your daughter up. I'd be questioning why they only went with sitting/laying.

It's good that they're doing an MRI; to check everything. Is your daughter seeing a Paediatric orthapaedist?? Scoliosis in very young children is not the 'norm' and a Paediatric orthapaedist is the best way to go. When they do the MRI, ask for the scan to be read by a Paediatric Neurosurgeon, so you have 'trained eyes' reading the scan (they look at those things all day
:-)...not just the radilogist's report.

I know there's a Yahoo Group of parents who have Infantile Scoliosis....the name escapes me though.

Have you considered looking into the serial casting procedure/has the Doctor mentioned it as an option. With your daughters age, it's something worth looking into. If you put 'serial casting' into the Search it will come up with stuff. Or if you look for posts from Celia Vogel, you'd find some information (her daughter went through serial casting).

Good luck

Hope I've given some stuff for you to ponder :-)

EDIT: this one's probably a good place to start to look a Serial casting

http://www.scoliosis.org/forum/showthread.php?t=379

Alison

desheah
01-05-2006, 01:31 PM
hi morticia,

the other groups you might want to look at are:

http://health.groups.yahoo.com/group/infantile_scoliosis/

and

http://health.groups.yahoo.com/group/Infantile_Juvenile_Scoliosis/
- celia's the moderator of this group

there are a few more of us on these boards that you can bounce ideas off of.

deshea
mom to lucas - diagnosed with infantile scoliosis at 18mos 68o/45o, braced for a year, in serial plaster casts from 2 1/2 until now at 4yrs old at shriners in erie, pa (dr. sanders). in the cast, 13o/7o and out of cast 20o (july 2005);
& ruby 18 mos now
north of boston, ma

Carmell
01-05-2006, 03:58 PM
Hi Morticia,

I live in northern Utah. Have you considered bringing Allana to Primary Childrens to see a pediatric ortho? There is also a WONDERFUL Shriners in SLC that will help you. If you don't have insurance, their services are FREE. Please consider this. Allana will be dealing with scoliosis for her entire life. You want to get the first years off to a good start. Avoiding fusion surgery is a MUST. There is a time and place for fusion, but not usually for infants/toddlers. Let me know if you have any questions specifically. Feel free to email me anytime. My email is boulderfam@hotmail.com

My best!

mariaf
01-05-2006, 04:39 PM
Morticia - I sent you a private e-mail. (My son, too, was diagnosed very young).

All my best,

Maria

desheah
01-05-2006, 04:50 PM
maria,

i recently re-read a post from you about your son's treatment. could you tell me how your son was chosen for the vertebral body stapling or the reasons that you chose this option over another? i'm always curious to read about any of the fusionless surgical options just in case we ever have to go down that road. any information that you could share, i would appreciate. :)

thanks,
deshea

mariaf
01-06-2006, 02:07 PM
Hi Desheah - In our son's case, the stapling was an alternative to spending several more years in a brace. We went to Shriners (Philadelphia) and David was deemed a candidate based on the fact that he still had growing to do and that his curve was between 20 - 40 degress (Dr. Betz said that is the GENERAL criteria they are looking for - but each case is evaluated individually based on additional factors as well - flexibility, rotation, etc.).

If you have any specific questions please either post them here or send me a private message and I will be more than happy to try to answer them :)

Best regards,

Maria

Morticia
01-11-2006, 02:14 AM
Thank you everyone for all the support, have been busy and am now just getting back online so sorry for the slow reply to you guys.
Yes she is seeing Pediatric ortho. His name is Dr. king and not only is he a spinal specialtist, he's an orthopedic surgeon and we have been told he is the best. He practices with Intermountain Orthopedics. He has had all the training that makes him an orthopedic surgeon and spinal specialtist he has had a full year additional training in specifically scoliosis.
As for the question about her xrays, no she did not have the standing xray done, but I will ask about it though. Allana's update is that Thursday she goes in for her MRI, which I am very anxious about, then within 3 weeks or so will be fit and placed in her brace.
I will update on the 20th when we go in for the follow up to get the results of her MRI.
Thank you everyone!!!! :)

Atlas01
01-13-2006, 03:08 AM
Was your daughter's birth 'remarkable' e.g. was it tough, traumatic, was her delivery a forceps birth etc.....?

mariaf
01-13-2006, 08:23 AM
Desheah,

I sent you a private message.

Maria