Re: Our son Cole / newly diagnosed with scoliosis

[Guest guest]

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We are right there with you. We just discovered this week that our 4 month old daughter (also a twin) has a 30 degree curve. Our doctor sent us directly to Children's Hospital in Cincinnati and she will be getting a cast put on in a few days. The only test we have had so far was an x-ray. We don't know yet what has caused it but I am glad the ortho specialist at Children's has jumped in and taken action so quickly. I was expecting a brace but totally broke down when I was told she would be in and out of a cast. He said they would alternate between cast and brace every 3 months to postpone surgery as long as possible. Hopefully not till she is around 12 years old and with lots of prayer maybe not at all. I cried my eyes out because all I could picture were the fears for my girl's childhood that you had for your son. I was completely put at ease after getting on this site when I got home and found out that alot of

children's curves has been corrected by doing the cast and am thankful it was the first option given to us. Our other twin has a slight curve but to insignificant to call scoliosis as of now. They are going to continue to monitor her. Our stories are very similiar and our fears are exact. I hope you the very best and I hope this site helps ease your mind as much as it did me.

Take care,

michelle_r_baird <michelle_r_baird@...> wrote:

Hi, our son cole was just diagnosed with scoliosis with a 40 degree curve. We have only had a chest x-ray, and are waiting to be scheduled for an mri to tell us more. I am really scared as to what to expect. The only thing familiar to me about scoliosis is that they used to check for it in school growing up. We don't even know if it is congenital or infintile scoliosis. He is 7 months old and is a twin. I am hoping it can be corrected without surgery, but the dr. said at some point he will probably need surgery. So far he has met all his milestones on target. The dr. said we need to wait 3 months to remeasure before we make a tx plan. I am nervous to wait that long, but don't know what the options are. I am nervous about him not being able to play sports, kids making fun of him with a brace, his self esteem, etc. Any advice or

stories/experiences are appreciated. I'm sure I'll be on these boards alot. A little about us: My husband and I live in cleveland. I am a speech therapist, and my husband is in law school and mba school. We have a 2 1/2 year old daughter and twin 7 month old boys born at 36 weeks, non identical. Life is good, but we just want little cole to grow up healthy and happy. Thanks for all your replies.Jim & Abercrombie

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[Guest guest]

,

The MRI should let you know for sure whether it is congenital or idiopathic. If it is idiopathic, I encourage you to look into the casting option. Many children who go this route, do not end up needing surgery. , who runs this the ISOP site, can send you a video of the procedure if you email her with your address.

Typically surgery is the very last resort particularly with a child as young as your son is. I assume your doctor wants to wait three months to see if your son is going to resolve or not. However, I would highly recommend that you see a PEDIATRIC ortho that specializes in infantile scoliosis - there aren't a whole lot of them out there. Many of us here take our children to Shriners. There is one in Salt Lake and one in Erie, PA that does the casting. Also, I know that the Shriners in Philly treats kiddos with congenital scoli.

My son is in the 32-36 degree range with a compensatory curve of approx. 20 degrees. He is due to be casted next month in Erie. He was diagnosed at 6 months of age, so I can totally relate to how you are feeling right now. It's a bit overwhelming, but the more you educate yourself, the easier it is to deal with. Good luck with everything.

Noelle (12-2-01)Ian (8-15-04)

Our son Cole / newly diagnosed with scoliosis

Hi, our son cole was just diagnosed with scoliosis with a 40 degree curve. We have only had a chest x-ray, and are waiting to be scheduled for an mri to tell us more. I am really scared as to what to expect. The only thing familiar to me about scoliosis is that they used to check for it in school growing up. We don't even know if it is congenital or infintile scoliosis. He is 7 months old and is a twin. I am hoping it can be corrected without surgery, but the dr. said at some point he will probably need surgery. So far he has met all his milestones on target. The dr. said we need to wait 3 months to remeasure before we make a tx plan. I am nervous to wait that long, but don't know what the options are. I am nervous about him not being able to play sports, kids making fun of him with a brace, his self esteem, etc. Any advice or stories/experiences are appreciated. I'm sure I'll be on these boards alot. A little about us: My husband and I live in cleveland. I am a speech therapist, and my husband is in law school and mba school. We have a 2 1/2 year old daughter and twin 7 month old boys born at 36 weeks, non identical. Life is good, but we just want little cole to grow up healthy and happy. Thanks for all your replies.

[Guest guest]

Hi ,

Welcome to the CAST Support Group.

Please read www.infantilescoliosis.org in its entirety, when you get a chance. (I'm sure you are so busy with twin boys!)

Sounds like you have done some research already. Once the MRI has been done, and the type of scoliosis is determined, the best plan of care will be easier to determine. There are many parents on this group that have congenital and infantile scoliosis experience, and are always willing to share their experiences/advice.

If its determined to be infantile, early treatment is the best way to go....Please look at the files section of this group for the article titled "Growth as a corrective force in the early treatment of progressive infantile scoliosis". Also, get a copy of "A New Direction", which is an invaluable video about the early treatment with POP jackets/cast treatment.

The "wait and watch" philosophy of treatment for progressive infantile scoliosis is not the best approach. As your motherly intuition is already indicating to you.

Sincerely,

HRH

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Our son Cole / newly diagnosed with scoliosis

Hi, our son cole was just diagnosed with scoliosis with a 40 degree curve. We have only had a chest x-ray, and are waiting to be scheduled for an mri to tell us more. I am really scared as to what to expect. The only thing familiar to me about scoliosis is that they used to check for it in school growing up. We don't even know if it is congenital or infintile scoliosis. He is 7 months old and is a twin. I am hoping it can be corrected without surgery, but the dr. said at some point he will probably need surgery. So far he has met all his milestones on target. The dr. said we need to wait 3 months to remeasure before we make a tx plan. I am nervous to wait that long, but don't know what the options are. I am nervous about him not being able to play sports, kids making fun of him with a brace, his self esteem, etc. Any advice or stories/experiences are appreciated. I'm sure I'll be on these boards alot. A little about us: My husband and I live in cleveland. I am a speech therapist, and my husband is in law school and mba school. We have a 2 1/2 year old daughter and twin 7 month old boys born at 36 weeks, non identical. Life is good, but we just want little cole to grow up healthy and happy. Thanks for all your replies.