Re: 17 month old with congenital scoliosis

January 20, 2008

Was the diagnosis of congenital a firm one? It sounds like

progressive, and we were misdiagnosed in the beginning, too.

Did you have an MRI?

I believe the doctor you really want at SLC Shriners is Dr. D'Astous.

He's trained in the Mehta method of early intervention scoliosis

treatment with serial casting.

Sandi

January 20, 2008

Sorry - I read the whole post better this time.

Okay - so basically right now you just need to get through the MRI.

That's essential for the diagnosis because then you know if is

congenital (meaning there is a medical reason for it happening).

Idiopathic or infantile scoliosis as it is often referred to here, has

no reason. The MRI will help you to determine if there are things

like wedge vertebrae and a tethered spinal cord, or some other cause

for it. If there is no reason, it is likely idiopathic (or infantile

scoliosis).

If it is the latter, then I would be sure you follow up with a doctor

at Shriner's who has been properly trained in early intervention. As

I mentioned, Dr. D'Astous is the one I have heard of here that other

Moms use.

There are always risks involved in the anesthesia aspect of the MRI,

but they are low in a qualified facility. I'm sure your son will be

in good hands in SLC. That was the easiest experience we had with

anesthesia out of all of them (the MRI).

Please let me know if I can help any further. I'm sure some of the

Salt Lake moms will chime in here soon

Sandi

January 20, 2008

I defer to the other parents to answer your questions about the

congential scoliosis, but has had several MRIs from 2.5 months

to 17 months with absolutely no problems. In fact, MRIs are even

better than x-rays or CT scans when it comes to radiation exposure.

The only thing is the anesthesia, but it's not exactly the same as

when a child has surgery. Again, has been through all of these

many times with no problems.

-

>

> Sorry - I read the whole post better this time.

>

> Okay - so basically right now you just need to get through the MRI.

> That's essential for the diagnosis because then you know if is

> congenital (meaning there is a medical reason for it happening).

> Idiopathic or infantile scoliosis as it is often referred to here, has

> no reason. The MRI will help you to determine if there are things

> like wedge vertebrae and a tethered spinal cord, or some other cause

> for it. If there is no reason, it is likely idiopathic (or infantile

> scoliosis).

>

> If it is the latter, then I would be sure you follow up with a doctor

> at Shriner's who has been properly trained in early intervention. As

> I mentioned, Dr. D'Astous is the one I have heard of here that other

> Moms use.

>

> There are always risks involved in the anesthesia aspect of the MRI,

> but they are low in a qualified facility. I'm sure your son will be

> in good hands in SLC. That was the easiest experience we had with

> anesthesia out of all of them (the MRI).

>

> Please let me know if I can help any further. I'm sure some of the

> Salt Lake moms will chime in here soon

>

> Sandi

>

January 20, 2008

thanks for answering my questions I am very greatfull to have found

this group. I'll wait and see how his MRI turns out, and then I'll see

what approach to take. Thanks again God bless all of you and your

families,

CINDY

January 20, 2008

Hi ,

I'm sorry to hear that your little one has scoliosis. It can be a scary

journey, but you are in very good company.

I'd like to know more details about the congenital scoliosis diagnosis. Does he

have a single hemivertebrae? multiple bone malformations? any other medical

issues that may complicate treatment for scoliosis?

Dr. Ogilvie is a great researcher and very good with teenagers who have typical

scoliosis issues. He is not my first choice for infants/toddlers with

congenital or infantile scoliosis (not even on my list, actually).

Waiting 6 more months is not a good recommendation either. His little body is

in a rapid growing pattern. In another 6 months his spine may be much worse.

They recommend 3-4 months between checkups until age 3yrs old.

Dr. O is right about one thing - if he has a congenital malformation in his

spine, there aren't many non-surgical options besides " wait and see " . Sometimes

this is the right plan, but, if I were in your shoes, I would be getting at

least one or more opinions about treatment options. Dr. at PCMC is

an expert in congenital kids. If insurance is an issue, please see Dr. D'Astous

at Shriners or even Dr. Santora. Both have more experience treating little ones

than Dr. Ogilvie. Do you need the names of their care coordinators for an

appointment sooner than 6 months? I strongly suggest you go back to see someone

(Dr. or someone else at Shriners) in 3-4 months, at most.

I also strongly suggest you find a ped. neurosurgeon to read the MRI scan. Not

just the radiologist's report. There is a great team of nsg's at PCMC who will

be happy to consult on the MRI. Just call their dept. and ask one to read it

for you. If you need the number, let me know.

Another suggestion - CALL the radiology dept on Thursday or Friday and confirm

that they have SEDATION scheduled for the scan on Saturday. You don't want to

show up and have had a misunderstanding.

This is scary, I know. You are doing a great job. Let me know if you need

someone to talk to. I'd be happy to send you my phone number. Braydon has seen

docs at PCMC and Shriners both. They really are excellent. You need details

about his medical issues and some are better than others to offer those details

to parents. Good luck and keep us posted.

Carmell

Mom to Kara, idiopathic scoliosis and hypothyroidism, Blake 17, GERD, and

Braydon 12, VACTERL-congenital scoliosis (fusion surgery 5/96), VEPTR patient

#137 (implant 8/01), Thoracic Insufficiency Syndrome (TIS), rib anomalies,

missing coccyx, fatty filum/TC (released 4/99 & 12/06), anal stenosis, chronic

constipation, horseshoe (cross-fused) kidney, dbl ureter in left kidney,

ureterocele (excized 6/95), kidney reflux (reimplant surgery 1/97), neurogenic

bladder, dysplastic right leg w/right clubfoot with 8 toes (repaired 2/96, 3/96,

1/97, 3/04), tibial torsion, 4cm length discrepancy-wears 3cm lift, valgus

deformity, GERD, Gastroparesis, SUA, etc.

http://carmellb-ivil.tripod.com/myfamily/

Congenital scoliosis support group

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

---------------------------------

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January 21, 2008

Hi ..

Carmell has given you some excellent suggestions...

Good luck!

and Evan (you can read story on ISOP's website)

Carmell Burns wrote:

Hi ,

I'm sorry to hear that your little one has scoliosis. It can be a scary journey,

but you are in very good company.

I'd like to know more details about the congenital scoliosis diagnosis. Does he

have a single hemivertebrae? multiple bone malformations? any other medical

issues that may complicate treatment for scoliosis?

Dr. Ogilvie is a great researcher and very good with teenagers who have typical

scoliosis issues. He is not my first choice for infants/toddlers with congenital

or infantile scoliosis (not even on my list, actually).

Waiting 6 more months is not a good recommendation either. His little body is in

a rapid growing pattern. In another 6 months his spine may be much worse. They

recommend 3-4 months between checkups until age 3yrs old.

Dr. O is right about one thing - if he has a congenital malformation in his

spine, there aren't many non-surgical options besides " wait and see " . Sometimes

this is the right plan, but, if I were in your shoes, I would be getting at

least one or more opinions about treatment options. Dr. at PCMC is an

expert in congenital kids. If insurance is an issue, please see Dr. D'Astous at

Shriners or even Dr. Santora. Both have more experience treating little ones

than Dr. Ogilvie. Do you need the names of their care coordinators for an

appointment sooner than 6 months? I strongly suggest you go back to see someone

(Dr. or someone else at Shriners) in 3-4 months, at most.

I also strongly suggest you find a ped. neurosurgeon to read the MRI scan. Not

just the radiologist's report. There is a great team of nsg's at PCMC who will

be happy to consult on the MRI. Just call their dept. and ask one to read it for

you. If you need the number, let me know.