a regression- too good to be true?

[abbysmom]

My daughter was diagnosed 2 yrs. ago at her 5 yr checkup. She initially had a 14 degree curve with "very little" rotation. We have been taking her to Dupont Hospital in DE every six months and had watched her progress to 24 degrees last summer. Our doctor said to prepare for bracing at our next appointment which was just after Thanksgiving. Her xrays showed only 11 degrees of curve! We were so prepared for what we thought was inevitable that I don't think we asked any questions at all - we just sort of ran out of there before anyone could change their minds! I don't want to give anyone false hope if we are as lucky as I believe we are. I do feel that no one is as happy as I am about it (they still seem too worried). Can curves that regress change direction and begin to progress again? Could an experienced hospital have somehow misread a xray to that degree? Her pediatrician thought a year was too long to wait for the next xray (as her specialist wanted) and wants her xrayed again in 6 months. You all are so knowledgeable- I'd appreciate anyone's input.

[jillw]

Woohoo! You must have been on cloud 9! My daughter was 6 when diagnosed and all the doctors did say that although it was unlikely, there was a chance that things could improve with further growth. From what I have read since, I figured that was like winning the lottery and I'm glad to hear that your daughter has!

I suppose there is a chance that the xrays were misread; if you request a copy of the xrays (you may have to pay $10 or so for it) you could take it to another ortho and ask them to measure the curve for you. That would give you comfort if they came up with a similar size curve. I also have to say, I think I agree with your pediatrician that you shouldn't wait a full year for the next set of xrays. Hopefully her new curves will hold (or even continue to regress!), but scoli is infamous for its sometimes big jumps in relatively short periods so I wouldn't want to take the chanced of letting 12 months go by.

How great it is to hear your good news.

[abbysmom]

Jill, thanks for posting- cloud nine is right! I really appreciate that tip on having the xrays read by someone else. I will definitely do that. I hesitated to post because everyone here is dealing with the same worries I have been experiencing for 2 years and I really didn't want to give anyone false hope. The web can be so grim when you start researching. Katie sounds like a Spinecor success story- have her out-of-brace numbers improved or at least stayed the same? I wish your family well. I have been reading this forum for most of the past two years (afraid to post) and I am so impressed with the parents here. This has been the toughest thing I have had to deal with as a mom. It's funny you mentioned the lottery. The first thing I said (when I stopped crying) was that I would never purchase another lottery ticket as long as I lived because I already got mine!

[scoliboymom]

Just a thought, but it's possible that it was the 24 degree curve that was misread. The science of reading curves off of x-rays can be rather unprecise. My sons x-rays were read by an intern once and he found there to be no change from three months before, when I questioned this later, the surgeon looked at them and said in fact there was a significant increase. Never hurts to get another opinion.
Hope her curves stay where they are.
Ramona

[jillw]

I'm glad you have posted. Like you say there is enough grim news out there for people doing their research so I don't think anyone will get false hope...however, it is nice to hear some good news. We need that!

Katie has only been in spinecor for 4 months so we haven't had any out of brace xrays yet. in fact out of brace xrays aren't really part of the spinecor protocol although at some point I will have them taken anyway -probably not for a while though unless her in brace curves start to increase. So far so good, although its too soon to tell if it will hold her curves throughout all her years of growth. (we've won the first battle, but its a looonnng war)

Just curious, did she progress gradually to 24 degrees or were there some big jumps in the curve? Please keep posting as she has future appointments and let us know how she is doing.

Jill

[abbysmom]

I'm glad I posted, too. Abby's curve was thought to be only about 4 at first when her ped. picked it up with a scoliometer. I have since learned that that device only measures rotation. The follow-up xrays showed 14, which Dupont confirmed 6 mos. later. We watched her progress at every visit (just as everyone expected). Next visit was 18, then 22, then finally 24. Her rotation had also increased. All but the initial xrays were taken at Dupont where they see a LOT of scoliosis and a lot of juvenile scoliosis. I keep wondering if Abby may have bent opposite to her curve during xrays and it wasn't noticed. After such a long stretch of worry, I guess it's hard to turn off. Not that I'm complaining- I wish you all the same problem! It is a long war and I wish you all the stamina you need.

[HaleyMom]

Hi Abbysmom

Our story is similar to yours - rib hump first noticed at 5, first xrays at 6 and slow progression with each xray. During one visit when she was seven she dropped from 24T to 11T. We were estatic. The ortho recomended a follow up in 6 months - it was back to 26T. The ortho told us that he didn't believe the 11 - he said its hard for small girls to hold still, especially if they load them down with a heavy lead apron. If they twist to the side at all or shrug their shoulders during the xray it can really throw off the numbers.

Hopefully your numbers are real!!
Definitely go back in 6 months
HaleyMom

[abbysmom]

Hi Haleymom- Thanks for your post. It took me a few days to digest that because it's just what I'm worrying about. I called back Dupont today and they were reassuring. They told me that they saw during the physical that she is no longer out of balance, which would support what the xrays are telling them. They also said they didn't want anyone losing sleep worrying (gee, does that happen?) so they would be happy to move her appointment up. I didn't schedule yet, but I guess everyone is right- better safe than sorry. Thank you so much for sharing your experience with me. I know exactly how you felt when you heard that 11, so it doesn't take much imagination for me to understand the heartbreak of having that taken away. I wish Haley good health, and for you, continued strength.

[shaes mom]

Hi Abbysmom,

I'm also new here. My daughter, Shae, was diagnosed 2 years ago with 2 20degree curves. After 6 months it fluctuated a little bit. My husband is a physical therapist so he started to do core exercises with her EVERY night. So when we went in Dec. 07 she was 11T/16L. We thought WOO HOO!!!! It worked! However, we just went last week and she's now 18T/18L. I know how exciting it is and maybe your daughter will be one of the one's who just "grows out of it". I really hope so. However, I just want you to proceed with caution. Just be on the safe side and get the xrays done. In 4 months Shae progressed 7 degrees and I know from reading other posts that it can be a lot worse than that. But do stay positive and live in the moment.

Take care.

Theresa, Shae's Mom

[abbysmom]

Just wanted to update all of you who were so kind: Abby returned to Dupont Hospital today for new x-rays and there is NO curve at all! I had a good feeling and so we did wait the full year, but I can't express what it felt like to hold those x-rays today and see with my own eyes how straight she looks. I really thought that was an impossibility. She will not have any more x-rays, but will continue with yearly visits to check-up. I know that we are lucky beyond explanation. My heart and prayers are with all of you and your children as you fight the good fight. Merry Christmas to all!

[laurieg6]

Congratulations! I can imagine the relief you must feel.

[jillw]

You must have read my mind...I was thinking of you and was planning to find your post and ask how thinks were going now that some time had passed. That's fantastic news! So when you say no more xrays but annual checkups, does that mean they'll visually check her (i.e. bending test)? Please keep us updated....I realize that your daughter won't have another checkup for a year, but if you could pop back in and continue to share her news with us after each checkup, I would look forward to seeing it.

Thanks for sharing your followup news with us!!

[cakebaker]

Hi Abbysmom,
What great news. We have a similar situation. My 6 y/o DD was found to have a 19* curve appx 3 months ago. She had a 3 month F/U yesterday with her ortho and the new x-rays show a 10* curve! We were ecstatic. I'll look forward to reading your updates! I'm so happy or your family.
Sally

[abbysmom]

Sorry Jill,
I haven't logged on in a while. Yes, Abby will go back for the forward bend and several balance test. They always seem to check reflexes pretty thoroughly, too. How is Katie?

[abbysmom]

Hi Sally,
I'm so glad to hear of another regression. What good news! What follow-up will there be for your daughter? Have you managed to turn off the worry yet? Please keep us updated.