Please help

[Carmell]

Hi Toy,

My son, Braydon, is also in 4th grade. He has severe congenital scoliosis and has had two vertical, adjustable rods placed to support his spine and his chest. He is doing very well. He loves the social part of going to school, but hates doing the work - its too boring, he says. His homework consists of papers to do at home. So far, he doesn't have to bring heavy books home. I'll be sure to have a note from the doc in the future that says he can't carry a heavy backpack or books. Braydon only carries a trapper-keeper-type binder, which is heavy enough as it is.

Braydon is all boy. He loves to dig in the dirt, ride his bike, climb on the playground equipment, and so many more things. Having scoliosis hasn't slowed him down much. He is not academically delayed nor is he physically delayed.

Scoliosis can be an overwhelming thing to you, in the beginning. Try to take it one step at a time and make sure you cover all the bases. Scoliosis in young children is not common. You will want to make sure they do a spine MRI to rule out any hidden problems that may be contributing or causing the scoliosis. Do you know if he has congenital scoliosis (I didn't look back at the other posts - congenital would mean at least one bone malformation in the spine)? If so, he would need to have his kidneys checked to make sure they are okay. Things like that.

I hope Shriners can help you, or someone. Dr. Emans in Boston is wonderful. Drs. Betz and D'Andrea in Philly are great too. There is also a doc (can't remember his name) at Shriners in Erie PA who has a good reputation. Hopefully you can find someone who will give you answers that you need for peace of mind.

Take care!

[Stephen's mom]

Carmell

Thank you for sharing that. Stephen's Dr did not tell me anything. I was in shock to even speak really. Now I dont have the insurance so I am just learning some basics. I will get him seen one way or the other. From what I can see it doesn't look bad to me. It is up near his shoulder blades area. It looks to be curving to the right. So I have no clue. I am guessing even at this early stage they should be able to tell me what tpye. something anything.

I leave him be to do what he feels good about. I have noticed lately that he is complaing of his back hurting allot. He could just be doing it for attention but not likely because I have played it off as nothing to worry about and no big deal for now. Until I know more and have more answers. The only mention of it really is I didn't want him carring a heavy back pack. And as soon as I can I am getting him a new pair of shoes with much better support. That is it really that has been said. I don't want him freakin about it. Thats my job

again thank you.
Toy

[Stephen's mom]

Well tonight Stephen and I had a talk about it. I told him about it and he seems okay except for the part that some end up in surgery but he knows now that doesn't mean he will. He had his tonsils out and he hated it.

He is acting all grown up about it. I guess someone in the afterschool program was talking about things like this and Stephen said I have scolosis. So he seems fine. Weird talking to him about it. but I guess it is better to talk about it now so if and when anything happens he will be okay.
thanks everyone

[nikyergen]

Way to go. Keep those lines of communication open for your son. He'll talk to you about it at some of the oddest times. If you haven't heard from Shriners today, please call them back. I am surprised they haven't called you back yet. Portland Shriners usually calls back within 24-48 hours.

Carmell has given you some great input. She has dealt with scoliosis since her son was very young, so is very knowledgeable. The tests she mentions are very important.

'til later,
Nikki

[Stephen's mom]

Are these test important right now when it is very slight? Or can they wait until he gets worse if he gets worse?
thanks again

[Carmell]

Hi Toy,

First, you should have an evaluation by a PEDIATRIC orthopedist who specializes in scoliosis in young children. This doc will be able to tell you what kind of scoliosis your son has. If he has congenital scoliosis (meaning at least one bone of the spine is malformed) you will want to have these other tests done sooner than later. In your first post, you mentioned that he is very thin. Sometimes (again, a rare thing) if a child has chronic renal (kidney) problems, they are generally undersized for their age. Also, many kids who have stomach reflux (GERD) problems tend to be small because eating food makes them sick. Things like that.

Once you understand the scoliosis issue (re: how much of a curve he has, and if he has a kyphotic curve, and if his legs are different length because of the scoliosis, etc) then you and the doc should decide which tests to do, and how soon to do them. The reason for doing a spine MRI sooner than later is to prevent an permanent nerve damage, if there is a spinal cord problem.

My point is that you need to get started with a baseline of information. Then, make the next decisions based on the information you know. Let us know if we can help you. Having a 4th grader too makes me want to help you figure this out. Keep us posted.

[Stephen's mom]

Okay thank you so much for all this info. I am going to be buying him the roller backpack before vacation ends and I still have not heard from shriners so I need to call again on Monday.

I feel better now because I wasn't sure if I was over reacting about finding more info and getting him checked again by a specialist. Now I am upset about his Dr because he didn't seem concerned in the least bit and didn't tell me about having him checked by a specialist or anything. I know he has knee problems that seem to have no reason for it. Even had exrays done and one Dr tried to say it was juvinial arthritis and another said it was nothing. The symptoms do not match the arthritis at all. I had no idea that his legs ccould be that effected with by this..... I mean i know they are all connected but I didn't think about it until you brought it up.

Oh my gosh....... I can't beleive this is happening. I am so glad to know that doing this now and not later is the right thing to do.

thanks so much

[krystal]

I just wanted to ask if the doctor, that said that Stephen may have had juvenile arthritis, did any testing. You all might be intested to look up J.R.A. I often wondered if there is a link between JRA and the onset of scoliosis, so I read alot on it. Look on www.arthritis.org. or put in jra in the search bar it will pull up alot of sites. I am pretty sure if they had evaluated me when I was younger I would have been diagnosed as early as 2 years of age. I had a inflammation in my hip joints and could not walk for weeks. But with lack of insurance and knowledge no one took me to a reputable doctor. So now at age 33 my hip joints are so stiff I can barely squat even with Celebrex or whatever the drug choice is. I have had both my kids looked at and involve them in yoga for the flexibility of it. Note there are 3 different types they discuss for JRA. Good Luck.
Krystal

[Stephen's mom]

They only took xrays of his knees and I have done so much research on this that he doesn't fit into the catagory in the least bit.... Also the growing pains doesn't fit to it as well. I am starting to think maybe there is something underlying that is causing the spine and knees to have trouble. We will see in time I guesss. It is so good to know that we have so much more info available now then back then huh? My mother went on a Chiro. kick and I couldn't even take anything for a head ache. Now if I go too long with out one I hurt so bad. I wish she had never started it with me. Anyway I am going to take care of all this one step at a time. I may have to way a few months due to insurance and such but I doubt he is going to get that bad in the next few months as I ahave said before it is barely noticiable at the moment.

thank you all so much this helps me so much.