Please help

[LindaRacine]

Sorry Toy, I'm not really following. In a normal spine, the cervical area (the neck) should be slightly lordotic (curving toward the front of the body). The thoracic spine should be slightly kyphotic (curving toward the back of the body). The lumbar spine should by kyphotic, and the sacrum should be lordotic. If yours isn't that way, you would be considered to have abnormal kyphosis or lordosis.

Hope that describes it.

Regards,
Linda

[Stephen's mom]

that helps a little there is deffinatly something not right in the lower back basically it is curving the wrong way it is like oppisit so either way I will go have it looked into just to make sure and I will be haveing Stephen followed up with the other Dr's. I thank you for all your imput. This place is wonderful. I have learned allot already.
thanks
Toy

[Mary Lou]

Toy,

Try not to dwell on the fact that you don't know where your son's Scoliosis is coming from. My daughter was diagnosed when she was 12 y.o. with both Kyphosis and Scoliosis and there isn't any history of either in my family or my husband's family. The doctors are thinking that my daughter's Kyphoscoliosis has come from a condition called Charcot-Marie-Tooth (CMT) which affects about five generations in my husband's family, but yet, none of them had ever heard of the CMT/Scoliosis/Kyphosis connection until I discovered it myself. I use to try and figure out where the Kyphoscoliosis came from in the beginning, but then realized that I was better off putting my energy into treating my daughter than trying to figure out something that I might never have an answer to.

I am glad to hear that you are taking your son to an Orthopedic doctor for both his back and his knees. Keep doing what you are doing-asking questions so you are well informed about your son's condition. May I suggest that you start a list of questions for the Ortho. to take with you and also, I would suggest that you take your husband, mom or a good friend with you to the appointment. I've found that two people can remember more than I could on my own.

Good luck and keep us posted.

Mary Lou

[Stephen's mom]

Mary Lou

Thank you for the suggestions about a list that is good. At this point though I have to wait till I get back from vacation to deal with all of this, so I was glad to hear that I didn't need to be in a rush. Do you know anything about how fast it can develope? If I remember right I think I read somewhere that different types at different paces and something about each child as well. I think I mostly concerned about his next growth spurt because when he grows he grows allot and very fast. I have seen him jump sizes in hight but then his wieght is so little for the size of pants he needs for the length.

Anyway thank you very much unfortunatly I will have to go alone with him and write it all down or something. Do you know what the chances of it never getting any worse might be?
Thank you
Toy

[Mary Lou]

Toy,

Sorry, but I really don't know what to tell you about how fast you son's Scoliosis will or will not progress. There is a mother on this forum who's son required surgery, but her daughter's curve has remained stable without surgery. There is another family who have three daughter with Scoliosis or Kyphosis and one is being braced, one is scheduled for surgery and the other is only being watched (I think I got that all right), so it is really hard to know whose will progress and whose won't progress.

I feel your pain when it comes to pants! My 13 1/2 y.o. daughter and almost 12 y.o. daughter have the same problem. They have long legs but they have no waist to speak of. My oldest only weighs about 93# and the younger one probably only weighs 65#, so for the waist band they need girls clothing, but the length is more suited to the junior department.

I'm sorry to hear that you'll be going to the doctor appointment alone. Give the doctor's office about two weeks to get the report from that day typed, then call the office and request a copy of the doctor's report. They always dictate a report for the child's chart, so at least if you get a copy, maybe it'll make a little more sense to you. I know I didn't remember everything that was said at the first appointment.

Try to enjoy your vacation.

Mary Lou

[Stephen's mom]

I am back

Well I got back from that vacation and now so many things have changed and now I do not have issurance for my kids.

I have afew more questions as I have not had a lot of time to search.

My son carries a big backpack and it is heavy. Should I invest in one that he won't have to carry but pull. Will it help him.

Also he complains of chest pain and ribs. I have looked at his back and I think I can see what the dr saw that day. I will watch it now and see if I think it gets worse. Without inssurance I am worried.

Should he have chest pain with this. He says it is his heart but you know a young child he could only think it is his heart.

thanks everyone

[nikyergen]

Toy,
Welcome back. I am not sure where you live, but I'd like to see you look into the Shriners Hospital. www.shrinershq.org. They have hospitals nation wide and are an incredible orthopedic hospital. That is were we take our girls for their orthopedic problems. Crystal had her surgery there. And, she is recovering very well.

Anyway, Shriners Hospitals do not charge for their services, no charge at all. If you need assistance with travel, food, motel, if you live quite a distance, the local Shriners clubs assist with that.

Don't be scared, we are all here to help you through this. It is absolutely terrifying. But, after having gone clear through the surgery end of this problem, it isn't so bad.

Call your nearest Shriners Hospital and fill out an application over the phone. This will help expedite things. They are a wonderful hospital and have wonderful doctors. You don't have to have insurance to use this hospital and you don't ever get a bill. So, please, please, please, get your son seen by a pediatric orthopedic surgeon at Shriners. All they handle at children under the age of 18.

A pull type backpack might make it easier for your son, if he will use it.

Keep you chin up and keep you faith in God.

Lots of prayers are being sent your way.

'til later,
Nikki

[Stephen's mom]

Thank you for your prayers. I will look into the shriners. I also have a healthy kids gold to look into. I live in New Hampshire and they want all kids to be covered. So I hope I can afford that at least for now. Things will get better with the insurance and such it will just take time. Yes my son will use one of the pull backpacks. They have been begging me for one anyways. They as in both my boys.

As of right now the curve is hardly noticable so I am not too alarmed. Al though I love my boys DR I would like to know more like what type does it look like ect... The Dr does'nt seem to worried right now at all. Like it is an everyday thing no big deal. Well to me it is a big deal. I want more info. I will look into the shriners today. At least they might look and tell me more and what they think.

thanks a million.
Toy

[Stephen's mom]

Okay I called shriners. The one in Boston is for burns only. They gave me a number to the one in Springfield I called and I have to wait for them to call back.

thank you so much....

[ecnw]

Toy,
Definitly look into your state's healthy kids program. I live in CA and both my kids are on it. We have a great plan with Blue Cross. We were given a selection to choose from, HMOs etc. But the BC plan gave the most options.
Since my kids are in the program, and their scoliosis is genetic, they qualified for another state program I didn't even know exisisted. This program pays for all their expenses, and is on a sliding scale if I make over a certain amount. I'm a single mom, so knowing these plans exist are great.
I would get your son a rolling backpack if possible. I walk my kids to school, and even in third grade, somedays it's too heavy for her little body(another light weight, all legs).
Do give a call in to the doctor to let them know about the chest pains. just to be on the safe side.
Emily

[krystal]

Hi,
I always buy my kids roller type back packs. The kind you carry puts too much pull on their backs. There are alot of programs out there to help with the kids insurance. You may want to contact Social Security to see if you have options with S.S.I. just as a back up and they also can give you a great lead. Hope things work out.
Krystal

[Jacque's Mom]

Books/backpacks

Just a suggestion about books. Once you have a diagnosis that your child has scoliosis, ask your dr. to give you a note for the school to provide your child with an extra set of books to leave at home so she/he doesn't have to carry that extra weight. I did it for my daughter all through grammer and high school. She never had a problem; as soon as she presented the note, they gave her an extra set - no questions asked. Just a suggestion, hope it helps. LYNN

[Stephen's mom]

all of you are wonderful

All this info helps. I have the paper work for healthy kids, I called the school nurse today. they don't do the test at school until they are in 5th grade. Stephen is in 4th. I am going to request they start testing sooner.

I will get him a roller backpack as soon as possible. He doesn't always have books but he doesn't get his work done durring school hours so he has to go it at home. Still have not heard from shriners but I will let you know when I do.

again thank you all so much for talking with me and offering suggestions and support. I know many of you have gone through this so much that you kinda get use to it but I am glad to know that you don't make others feel bad for kinda freakin thanks again.

[Mary Lou]

Toy,

I'm impressed that your school district checks kids as early as fifth grade! Our school district doesn't check kids until seventh grade. Jamie was diagnosed by our family doctor in August before she would have been checked in October by the school.

I'm not sure where you live, but you mentioned checking into Shriner's in Boston. I think we have two in PA and I know the one in Philadelphia is excellent!

Mary Lou

[Stephen's mom]

Mary Lou

Pa is just too far for now. Now if it gets worse and all that then of course I would make that drive in a heart beat so for now I think I should just stick close to here. I am in New Hampshire so the drive to boston and springfield is not too bad. I am still waiting for the return call.

again thanks to all of you
Toy