Mom to two girls (4 and 5 years old) just diagnosed with scoliosis

[mariya]

Hello everyone,

I am a young mom with scoliosis and just found out that both of my daughters have scoliosis as well. It was so sad to find out the news especially for me since i am still struggling with it myself. Even though their curves are not as big yet, i can just imagine what they will have to deal with for the rest of their lives.

I was diagnosed at the age of ten, just when my family migrated to Unites States. Nothing was done at the time because my curves were not large. So I went living a normal life without any back pains and my scoliosis was never noticeable. I got married and had two kids, after having each child i realized that my back did not look the same and i started to expirience back pain. I was told that i need to have surgery to correct it. My curves are now larger and progressed tremendously.

Well, as my girls were getting older I started to notice that my oldest one wasn't standing as straight and leaning towards one side...so i decided to take them both to see the doctor. The x-rays showed that they both have scoliosis. My oldest has a 15 degree curvature between the thoracic and lumbar area and 54 degree kyphosis. My younger one has a 14 degree thoracic curve and 45 degrees kyphosis. The doctor told me that i shouldn't worry about it at this point. She prescribed a shoe lift for my older daughter and nothing for my youngest. She said that both of them have one shorter leg by about a quarter of an inch. I am just so lost now with all that information and don't know what to do. Is there anything else i can do with them or should i just sit back and watch it progress more? Can anyone give me some tips on what to do or maybe recommend a speacialist to see in New York? The girls do their routine excersise they were given at the office but that's about it. I heard that swimming is really good for scoliosis...but that's about all i know that could help them.

I would really appreciate any help from parents that may have similar situations!!!!

Thank you in advance!

[mariaf]

Hi Mariya,

I, too, am from New York City.

After seeing one doctor in NY for a few years, I found that the absolute best treatment for scoliosis, PARTICULARLY for a child so young, is at Shriners Hospital in Philadelphia. My son was five when we began taking him there to see Dr. Betz and his team. He is now nine and doing well. We continue to go to Philly for follow ups about 2-3 times per year. It really isn't that far - a little over two hours - and they (Shriners) can help with transportation if you need it.

I really would recommend them over anyone in NY (or anywhere for that matter), particularly since your children are so young. Unlike a lot of orthos, they (at Shriners) don't just see the typical scoliosis patient which tend to be older kids and teenagers, but they see A LOT of juvenile and even infantile cases as well. They also see some very tough and complicated cases which are often referred there because of their outstanding reputation in the orthopedic community.

Good luck - and feel free to e-mail me as well if you like. I'd be happy to give you the contact information and point you in the right direction :)

[Qikdraw]

mariya

One thing I would suggest is putting in a 1/4 inch lift in their shoes for the leg that is shorter. I have one leg 1/2 inch shorter and never started wearing a lift until recently. This will help keep their hips even, which can only be a good thing. I just use those foam inserts you can put inside the shoe, its pretty cheap and easy to do.

Brad

[leahdragonfly]

Dear Mariya,

Welcome to the list! I am glad you found us. I completely understand the feelings and sadness you are experiencing right now, and it must be particularly difficult dealing with the diagnosis of both of your young daughters. I have scoliosis too, and will need revision surgery but I'm going to postpone it as long as possible. My 6 y/o daughter was diagnosed with a 26 degree thoracic curve in January. I had noticed her back did not look right. I think I cried every day for several weeks about this, because like you I was so sad to know what she would have to go through. For me the thing that helped the most, besides connecting with Maria F and the other wonderful folks here and at the vertebral body stapling group, was knowledge. I learned all I could about juvenile scoliosis. We saw a pediatric orthopedist locally and were basically told our daughter had 9-10 years of bracing to look forward to with a near-certain spinal fusion in the future. We ended up travelling across country to Philadelphia Shriners and were extremely impressed with the care there. They are very thorough, and you will be told all the options for your daughters' care.

Good for you for noticing the change in your daughter's posture, and getting the doctor to take you seriously. That's the first step. You can request copies of the x-rays to take with you to a second opinion, not just for the scoliosis but for the kyphosis too. Good luck, know we're here for you, we understand, you can ask anything here!

Take care,

[mariya]

Thank you for your replies Mariaf, Brad and Gayle!!! I had tears in my eyes when i saw your replies and such a relief to have your support and that I am not alone facing this with my kids. I appreciate everyones advice and Mariaf and Gayle you have a very good point about the Shriners hospital. I have been on this site for a while back when i was facing surgery in 2006 which i decided not to go forward with at this point in life. I read so much about the Shriners hospital on this website but when i needed it for my own kids my mind went totally blank on me. I guess its overwhelming information all at once because all three of us had seen the doctor that day and all three of us got bad news. So unfortunately i became really sad and couldn't stop crying every night and it was hard to believe it.

I am just so glad to know that there are other moms out here that can be such great support and give great advice!! This forum is the best thing that happened to me since i found out i had to have surgery.

I would honestly not hesitate taking the girls out to Philadelphia to the Shriners Hospital. I would travel anywhere in the world to the see the best doctor for them. I know Mariaf recommended Dr. Betz and his team...I will try to schedule an appointment with him, if that is possible. Is there a long wait to see him? Thank you so much for your support as it means a lot to me.

Mariya

[mariaf]

Mariya,

I sent you a PM.

[ecnw]

I know what you're going through, that's the same ages of my kids when I first noticed theirs. I had a bit of the guilt trip thing going on, I never thought of passing it down to my children. I never expected to see it so early on. The best thing is that you do understand what they are going through. It's not the end of the world and there are many different treatments. You need to use your gut instincts, do some of your own research, and get second opions and question your doctor on what is going on.
You did have a very emotional day, I cried at that first appointment too. It's good to bring a family member or good friend with you to help absorb what is being told to you.

Good Luck, Emily

[emarismom]

Mariya,

I'm also going to suggest that you contact your doctor and request an MRI for both of your daughters. There are many causes for scoliosis. Not all scoliosis is idiopathic. Sometimes there are underlying causes for the curves that need to be addressed before the scoliosis.

Many times the first symptom of an underlying neurological issue is scoliosis.

[nora b]

I wish my mother had been able to hear some of your comments when my sister and I were diagnosed with scoliosis almost 50 years ago. She also had scoliosis and was terribly guilty about having passed this on to her daughters.

Her guilt was expressed in a very negative way. We were yelled at for "slouching" or for not doing our exercises enough. She, of course, was just trying to help us but, but it came out in a very angry way.

Perhaps if she had been given the support of some of the people on this board she would have felt less guilty, and would have treated us differently.

Nora

[suziblui]

Hi,
My son was diagnosed with scoliosis at 9 months of age. Was casted and braced up until his surgery in June 2008, where his curve was 85' and getting worse. He also has Ehlers - Danlos Syndrome.
We were seeing Dr. Sanders at Erie, PA - Shriners up till Dec. 2007, when he left and relocated to Rochester, NY. Needless to say, we saw a few different doctors and were planning a trip to Philadelphia to see a surgeon there, when we decided to see Dr. Sanders in Rochester. If you ever want a different doctors opinion who is very knowledgeable on "Scoliosis", I recommend coming to meet Dr. Sanders. He's the "GREATEST"!!!

Sue & Matt

[khbohlander]

Hello! I'm in a similar situation.

I was diagnosed when I was 7... now I'm 36. I went through braces & even electro stimulation at night. I've had 3 major back surgeries. My daughter @ the age of 5 was diagnosed & put in a 23 hour brace from the start. She only takes it off for showers and the occasional dance class. Next week we take her back to John's Hopkins to see if her newer brace is helping or if they need to cast her body. My husband & I are nervous because we don't know what to expect. She is now 6 went through one growth spurt & was put in a more restrictive brace. Imagine how many more growth spurts she will go through.

We live in Maryland, but I'm from Jersey & often travel to N.Y. I will pray for your daughters. They are lucky though to have moms like us who have been through it ourselves! Take care!

Kristin

[khbohlander]

Hello! I just tried sending you a message but not sure if you got it.

I was diagnosed @ 7 & am now 36 yrs. old.

My daughter was diagnosed @ 5 & is now 6. She wears a brace 23 hours a day. we live in MD. I'll tell you more, but want to first make sure you can get this. Talk to you soon.

Kristin

[mariaf]

Hi Kristin,

I can truly feel for your daughter. My son wore a brace full-time as well for over three years until he had VBS in 2004.

Just in case you were not familiar with it, VBS (vertebral body stapling – or "stapling" for short) is an alternative to bracing, often referred to as an "internal brace". I'm not sure what your daughter's degree of curve is, but at age 6 she might very well be a candidate because one of the criteria is that the child have a lot of growth remaining. (My son was five at the time he had VBS. He is now almost ten and doing well.)

I don't know if VBS is a direction you are looking to go in, but I just wanted you to know the alternative existed. Several years ago, I was looking for an alternative to bracing for my son and I happened to find out about VBS, almost by accident. That's why I like to make sure others know about it as well - just in case it might be something they would want to consider. If you are interested, you can go to www.vertebralstapling.com and talk to other parents, etc.

In any event, my best wishes to you and your daughter!

[mariya]

Hello again,

Sorry that i have not been on here lately...girls are back in school and every day there is just so much on my plate with homeworks and gymnastics and so i apologize for not being in touch lately!

Well, I would like to start with some good news first! We are going to Shriners to see Dr. Betz on the 16th!!!!!!!!! I am so excited to finally be able to see the orthopedic specialists!!! Will make sure to post after the appointment!

Kristin, I did not receive the PM bec my PM box was either full or i just didn't get your PM. I am just so happy and relieved to find other moms out there that can totally relate to me because it's not easy to have scoliosis and try dealing with it and then to find out that your daughters have it too so soon and so young. :( I mean like someone had mentioned here that its not the end of the world and I know that some people have a lot worse problems that they deal with, but still this is a huge thing and i don't think any of us can deal with it lightly. Its tough and i am glad there is internet and we can do so much with it!

Sue and Matt, I hope your son is doing better after the surgery! I can not even imagine what you had to go through at such a young age. But I hope that he continues to do well and I am happy to hear that you are in good hands!!!

Nora i understand where you are coming from and although my mother doesn't have scoliosis, i unfortunately passed it to my daughters. I don't yell at them and never make them feel like something is wrong with their bodies. I know how you felt growing up and that is exactly what i dont want to do to my girls, they have enough pressure from other mean girls in school and so that kind of stress at home is just unessary. I want to thank you for writing about how it negatively had an impact on your childhood and i will not do that in my own family!

Also thanks to Emily's mom for mentioning about the MRI. I will sure ask about it at the next doctor's visit as it is important to rule out the other conditions! So thank you!

And Emily, its so good to hear about other moms that expirience the same thing as I do. I always take my husband with me to all of our doctors appointments and it still is very emotional and hard on me. I just have to deal with it and I am blessed to have the support on this website and so many wonderful people that give such great advice!!!

MariaF i will call you after my visit with Dr. BEtz. I have to admit, his PA is such a wonderful lady! She was helpful in setting up the appointment after having some difficulties for couple of months! Glad you helped with the contact info! Thank you!

Again, many thanks to all who replied and I can't thank you enough!:)

Mariya

[mariaf]

Hi Mariya,

I saw your other post about an appt. for yourself and was wondering about both you AND your girls. Great to hear from you!

I have been busy as well but would love to get together, or at least chat on the phone again.

Best of luck to you next week at Shriners (and yes, Janet, is wonderful).

Talk to you soon,

[mariya]

Yes I recently started to have second thoughts about my own scoliosis and I honestly am very upset with myself that i haven't taken care of my back. The main reason for cancelling my surgery two years ago was to try alternative treatments before going under the knife but that just didn't happen. I blame everything on time and that I just dont have the time these days. I leave home at 7am and return at 6pm to deal with kids and homeworks. Weekends fly by and my husband is just never home bec he works two jobs. So, I just let the two years go by and didn't do anything about my back. :(

Well, back to the girls, i am very excited about meeting Dr. Betz and Janet is amazing! I think we should definetely get together with you and meet each other. If you don't have anything this coming Saturday, maybe we can meet together with our families somewhere for dinner? Sunday we have a party to attend so if anything Sunday afternoon is also good for us. This would be nice since we can also get heads up about Shriners and about their great care!

Thanks!

Mariya :)

[mariaf]

Hi Mariya,

Why don't you e-mail me and we'll work something out. We have another commitment around 6 p.m., but if you are open to a late lunch on Saturday that might work :)

If not, let's just chat and plan for something in the VERY near future! I would really love to meet your family.