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MaryH
08-23-2005, 10:24 AM
Hi ya'll,

My daughter had her dr. appt. yesterday. He said we are dealing with scheurman's disease.

Anyone else have the same?

We are considering going to Shriner's in LA. Our insurance only pays 50% and since this is going to be a long term treatment, we are wondering which way to go. Campbell Clinic is so much closer, but then.....so much to decide, I feel like I'm in a fog this morning!

He said she needs a brace 22 hrs. per day for 1 yr., then a brace only at night the 2nd yr. Have also got her set up to start Physical Therpay Wednesday.

Do you have to be referred to Shriner's by a dr. or Shriner? Do I just call the hospital to start admission?

You folks have been great. Thanks for all the help.
Mary

Mary Lou
08-24-2005, 06:55 AM
Hi Mary,

If you do a search you'll find there are a few people here whose kids have Scheurman's disease.

As for how to contact Shriner's some people say they needed a sponsor, but I'm from PA and I got their phone number from their website and called myself and made all the arrangements. Good luck.

Mary Lou

MaryH
08-24-2005, 09:09 AM
Thanks Mary Lou. I did call Shriners yesterday and they took my application over the phone. I should be hearing from them in a couple of weeks.

My husband is in complete denial that dd has a problem that needs to be dealt with. It seems that's just the way he handles things. It makes it harder on me, 'cause I know we have to get her braced the sooner the better. He seemed better about it last night but this kind of thing can sure be hard on the whole family, can't it?

Best wishes to all,
Mary

Mary Lou
08-24-2005, 02:00 PM
Mary,

I'm sorry your husband is in denial. I think God knew what he was doing when he made us Moms. It seems like we are always the ones looking out for our kids, we are the ones who have to make the tough decisions, and I hate to say this, but you will probably be the one fighting with her to wear her brace. Hang in there, you can do it. I know my Jamie is almost 9 months post-op and still has some restrictions-no amusement parks, no riding the 4-wheeler-yet my husband asked her Fourth of July weekend if she wanted to ride the 4-wheeler with him. She told him she wanted to, but wasn't allowed, thankfully, but he again asked her to go with him and promised to go slow! I could have screamed!!!! So, see even 2 years from her diagnosis, my husband is still in denial.

What kind of brace is your daughter getting?

Mary Lou

MaryH
08-24-2005, 03:19 PM
Mary Lou,

I'm not sure what type of brace Anna will be getting. Her prescription calls for an "underarm Kyphosis brace - Kyphosis apex @ T9".

Any idea what this will be like?

Thanks,
Mary

Mary Lou
08-24-2005, 04:42 PM
Sorry Mary I have no idea what type of brace she will be getting from that information. I know Jamie was put into a Milwaukee brace first and since she wouldn't wear it we then tried a Boston brace with an extra pad added to help push the Kyphosis, so seems like they use different types of braces for Kyphosis.

Mary Lou

Joe's Mom
08-24-2005, 08:03 PM
My 16 year old son has Scheurmann's Kyphosis in addition to idiopathic scoliosis. He began physical therapy 4 months ago to provide back strengthening exercises. His scoli curve has remained at 35 degrees since starting PT but his kyphosis curve has actually decreased a few degrees. Please consider starting PT if you haven't already. Oh . . he is wearing a night time brace as well, but the PT has had a visible effect on his standing and sitting posture.

nikyergen
08-25-2005, 01:47 AM
Mary,
There are several of us that have children with Scheuermann's Kyphosis. My 16 yo dd had surgery on 3/15/05 and my 13 yo dd wears a brace. Both diagnosed with Scheuermann's. As hard as it may seem now, it is managable when you get used to the idea. Our dad wasn't really in denial until it came time for surgery of 16 yo dd. He wouldn't even talk to her or I about it. He finally talked to her the night before surgery. I don't really think now that it was denial as much as it was fear. Nothing like going into Shriners and being told that all three of your dd's have scoliosis, Scheuermann's kyphosis, or both. It was pretty tough for us to swallow, especially since all of our dd's are athletes. However, Shriners is the only place to take a child for any type of orthopedic care. Get your application in soon. Call them on the phone. It's a great hospital.

Outlook today. Life couldn't be any better for the girls at this point. 16 yo dd has a new job and you wouldn't necessarily know she had surgery 5 months ago. 13 yo dd still hates wearing her brace, but it is getting better everyday. 15 yo dd says she won't quit playing sports and continues on with her busy teenage lifestyle. Life has gone on even when we think it needs to slow down and wait for us to catch up.

If you have questions as you go through this, just ask. Someone will answer. There is never a dumb question either.

'til later,
Nikki

MaryH
08-25-2005, 09:04 AM
Thanks you guys....

Anna had her first PT appt. yesterday. Watching her doing her exercises I'm thinking.....why didn't I notice this sooner. She seems to have pain when lifting or moving her shoulders back. Why didn't I notice this before? Why didn't she complain more and get my attention? I know there is no need to beat myself up over this....I'm just thankful we found it when we did.

Joe's Mom, its encouraging to hear your son is showing improvement with PT.

Nikki, Wow! you have a lot to deal with.....3 kids with the same or similar problems. At what point did you find out all 3 had it? Anna has a twin sister and a 11 yr. sister. I haven't noticed a problem with either of the others, but I wonder should I have them checked by a dr.??? Anna's twin is 3 almost 4 inches taller than Anna and they had always been the same (or at least almost) the same height. I had laughed and told Anna she was gonna have to hurry up and get her growth spourt! Little did I know...... The youngest will be getting scoliosis screening this year at school, but is that enough to find kyphosis?

My dh is doing better. I think he just needed time to process all of this. At one point he said...maybe it's something she'll outgrow. I told him "that's the problem, her spines not growing correctly...we have to do something now to correct it". He's slowly coming around.

Waiting to hear from Shriner's.
Mary

nikyergen
08-25-2005, 12:42 PM
Mary,
Portland Shriners wanted to check all of the girls. We had a referral for our 16 dd, she had an 88 degree Scheuermann's Kyphosis curve. Our Ped doc recommended that all three of them be seen. We found out a year ago and all of them had appointments at Shriners on the same day. I would get them all checked. That way if another one gets started with it, it can be possibly braced to stop the curves.

After the initial shock of being told on the same day that all three of the girls had Scheuermann's and/or scoliosis, things have gone on as normal. The girls still played basketball last season, rode their horses, did their rodeo thing, etc. Don't let it bring your life to a hault. Go on as normal. Anna will be able to do all the things she does now. I guess I look at is as on of life's experiences God has given us to grow on.

The surprising thing is the number of families we know personally that have children that have scoliosis or Scheuermann's Kyphosis and didn't even know their kids have a problem. We have three personal friends that their daughters have had surgery within the last year.

Chin up, have all three girls seen at Shriners. Everything will be fine.

'til later,
Nikki

MaryH
08-25-2005, 01:57 PM
After the initial shock of being told on the same day that all three of the girls had Scheuermann's and/or scoliosis, things have gone on as normal.



hee, hee....Just got back from lunch with dh. (I'm at work)
I asked him if we can go camping this weekend. I said "I'm just ready for everything to get back to normal". He said nothing will ever be normal again......I said, but it will, it will! Then got back and read your message. Thanks for the encouragement!
Mary