So the pediatric orthopedic doctor gave us some bad news...

[lexi]

I’m editing my post. Good lord. Everyone is focused on the fact that I’m sad that my daughter will have to take a break from her favorite sport rather than helping me figure out what I should ask my doctor  

I don’t apologize for being sad that my daughter might have to take a fairly long break from her favorite sport. It will make her miss a season. My daughter will be heartbroken to have to sit out for a season  I’m upset because I know this will be very difficult for her. But of course I am trying to think long term and do what is absolutely best for her for her future. 

So while I might not be articulating it in the best way I’m totally overwhelmed at the thought of surgery on both feet, a wheelchair, casts, walking boots, physical therapy and the amount of time it will take to get her full strength back so she can by my little, active, bouncing off the walls 9 year old. I’m also about to have a newborn and I already have a busy toddler. 

Now on to my question if we can focus on that: 

My daughter (age 9) has had pain in both feet off and on for a year. We saw the pediatric ortho a year ago. The x-rays were not super clear and he wasn't quite sure what was going on. He put her in a walking boot for several weeks and asked us to limit exercise such as running and jumping. It helped for a while. She was able to continue swimming and golfing since they don't put as much stress on her feet and ankles. 

Well, recently her feet have started hurting again and it's worse. So back we went. 

He took new x-rays and feels that her condition is worse and he believes she has a bone coalition in both of her feet. Basically there is no space between some of the bones and they are fused together. She does not have very good range of motion and flexibility. And of course, she has a lot of pain and discomfort. He believes she may have a tarsal coalition called a calcaneal navicular coalition. I've never heard of it. 

We're going to have an MRI in the next week and meet with him for the next steps. He wants to put custom inserts in her shoes to see if it helps but since she is having so much pain he believes that it probably won't help long term. He feels that surgery might be our best option if it is the bone coalition. The recovery sounds rough.

Has anyone ever had a child go through this? I had never heard of this before and I'm trying to put together a list of questions before our next appointment. I feel a little overwhelmed right now. And no, we're definitely not going to rush into surgery. But I'd love to hear any experiences from anyone so I can prepare for what might be ahead for us in the next year. What should I ask our ortho? And does anyone know of any therapy or anything else we can do that would help her? 

 

[Jean in Newcastle]

I'm sorry that she's had so much pain but 9 years old is a good age to be taking care of this problem.  It makes me cringe a little bit to hear you talking about a 9 year old's sports season being "destroyed".  Hopefully she will respond to the inserts. 

[plansrme]

I'm sorry about her seasons being shot; I know that is disappointing.  Is he sure she doesn't just have Sever's disease?  I know I've got no standing to be challenging an orthopedic expert, but 9 is the perfect age for it.  Has she tried heel cups (or a Tuli's Cheetah when she's barefoot)?

[UnionJack]

I don't know Lexi at all, but imagine if her child plays those sports competitively, she (the child) must really enjoy them.  If she isn't able to play for a full season, I can imagine that would be very sad for the little girl.  I'm making some assumptions just based on my own boys' love for sports.  I don't care about sports in the slightest but I know if any of my (four) boys had to be out for a season they would be very disappointed (even our younger two, 8 and 6 years old).  I'm assuming that's all that Lexi meant!

Edited May 7, 2018 by UnionJack
typo

[lexi]

24 minutes ago, Jean in Newcastle said:

I'm sorry that she's had so much pain but 9 years old is a good age to be taking care of this problem.  It makes me cringe a little bit to hear you talking about a 9 year old's sports season being "destroyed".  Hopefully she will respond to the inserts. 

 

With surgery she’ll be in casts for at least six weeks along with a wheelchair. Then she’ll have months of therapy to regain her strength. I’m upset about her missing sports because that’s what she cares about. Her siblings all swim and she’ll be very sad sitting by the side of a pool in a wheelchair while she watches them swim without her. And golfing is a family activity. I will be so sad that she won’t be able to do that. 

So I only care because it’s important to her. She does those sports because she loves them. Her friends are also in swim and she loves being a part of the team and spending time with them. 

I don’t care about how she places. I care that she won’t be able to participate for a time and that will be very hard for her. 

[Scarlett]

1 hour ago, lexi said:

My daughter (age 9) has had pain in both feet off and on for a year. We saw the pediatric ortho a year ago. The x-rays were not super clear and he wasn't quite sure what was going on. He put her in a walking boot for several weeks and asked us to limit exercise such as running and jumping. It helped for a while. She was able to continue swimming and golfing since they don't put as much stress on her feet and ankles. 

Well, recently her feet have started hurting again and it's worse. So back we went. 

He took new x-rays and feels that her condition is worse and he believes she has a bone coalition in both of her feet. Basically there is no space between some of the bones and they are fused together. She does not have very good range of motion and flexibility. And of course, she has a lot of pain and discomfort. He believes she may have a tarsal coalition called a calcaneal navicular coalition. I've never heard of it. 

We're going to have an MRI in the next week and meet with him for the next steps. He wants to put custom inserts in her shoes to see if it helps but since she is having so much pain he believes that it probably won't help long term. He feels that surgery might be our best option if it is the bone coalition. The recovery sounds very not fun for my competitive golfer and swimmer. It will destroy her season in both sports. 

Has anyone ever had a child go through this? I had never heard of this before and I'm trying to put together a list of questions before our next appointment. I feel a little overwhelmed right now. And no, we're definitely not going to rush into surgery. But I'd love to hear any experiences from anyone so I can prepare for what might be ahead for us in the next year. What should I ask our ortho? And does anyone know of any therapy or anything else we can do that would help her? 

 

My oldest step son has this in one of his feet.  He used a custom insert for a while but I don't think he does now .  The pediatric ortho talked dh and his XW out of the surgery.  But maybe if it is hurting so much there is no other option.

[lexi]

17 minutes ago, UnionJack said:

I don't know Lexi at all, but imagine if her child plays those sports competitively, she (the child) must really enjoy them.  If she isn't able to play for a full season, I can imagine that would be very sad for the little girl.  I'm making some assumptions just based on my own boys' love for sports.  I don't care about sports in the slightest but I know if any of my (four) boys had to be out for a season they would be very disappointed (even our younger two, 8 and 6 years old).  I'm assuming that's all that Lexi meant!

 

Thanks. That’s what I meant. I never really played sports so I don’t quite get the whole sports craziness. But now I’m a swim mom. I have 5 kids on the swim team and they love love love it. We go to swim meets as a family and we’re always at the pool together. Never thought we’d become that crazy swim obsessed family. But it’s what they love to do. And they all do it together on the same team. So I’m terribly sad that if we have to go the surgery route that my one child will have such a long and difficult recovery. I hate that it will keep her from doing her favorite thing. 

Of course, I don’t want her to be in pain and we’re trying to figure out the best plan for her. The dr is still not sure it’s a coalition. But it sounds a little scary so I’ve been very worried. 

So thanks for articulating my thoughts better. I’m just feeling so sad because I’m sitting at their practice watching them now. And the thought of pushing her around the pool in a wheelchair is sad. Thankfully the dr cleared her to do any stroke except breastroke. So she can still swim 3 strokes. She can do only low impact things right now. Thankfully swimming is ok until we know more. Only the breastroke causes her pain. 

[TechWife]

1 minute ago, Dotwithaperiod said:

Cringe?? She’s a little kid who must love sports, and will now have surgery that will keep her from doing what she loves this summer, no different than if a musically talented person needed hand surgery and wouldn’t be able to play an instrument for a few months. 

Being young and competitive bothers you?

It's very stunning and hard to hear that a child has a major health problem, I speak from experience. I think that in the moment, we are in shock for a bit.  We say and think all kinds of things as well as worry about all kinds of things that seem important at the moment, or seemed important yesterday. Recognizing that something will be difficult for our children is part of it. As an adult - we know that a treatable illness or condition doesn't necessarily "destroy" anything long term, but our kids don't know that. A child who has been told "no sports" when sports are their primary interest very well might feel that their life is being destroyed. I'm sure that once Lexi does some processing and learns more about the condition, she will be able to help her daughter through her very real disappointment (although that may take a lot of time to work through).  I think Lexi's reaction is a normal, empathetic way to process the situation.

[lexi]

7 minutes ago, Scarlett said:

My oldest step son has this in one of his feet.  He used a custom insert for a while but I don't think he does now .  The pediatric ortho talked dh and his XW out of the surgery.  But maybe if it is hurting so much there is no other option.

 

This is encouraging. We’re going to try the inserts. I’m praying it helps. I’d love to try those with some physical therapy and see if we can get her back to herself. This gives me some hope!

[TechWife]

2 minutes ago, lexi said:

 

This is encouraging. We’re going to try the inserts. I’m praying it helps. I’d love to try those with some physical therapy and see if we can get her back to herself. This gives me some hope!

 

If she does end up with surgery, maybe water therapy can be part of her recovery, too. Be sure to ask since she loves being in the water so much, it might be an encouragement to her.

[lexi]

35 minutes ago, plansrme said:

I'm sorry about her seasons being shot; I know that is disappointing.  Is he sure she doesn't just have Sever's disease?  I know I've got no standing to be challenging an orthopedic expert, but 9 is the perfect age for it.  Has she tried heel cups (or a Tuli's Cheetah when she's barefoot)?

I have never heard of this but I’m going to look it up and ask. Thanks you. 

[lexi]

7 minutes ago, TechWife said:

 

If she does end up with surgery, maybe water therapy can be part of her recovery, too. Be sure to ask since she loves being in the water so much, it might be an encouragement to her.

That’s a great idea. Thanks. I’m going to look into this because she would love that. 

[lexi]

And I know you all don’t know me or my daughter but this is my child who has had health struggles since birth. She has anaphylactic food allergies and I’ve had to rush her to the ER multiple times when she couldn’t breathe. I’ve held her for hours in the ER praying that she could breathe easily and hat her swelling would go down. She’s my kiddo with asthma who has such a hard time every winter with all the colds and flu junk. I’m up at night with nebulizers trying to help her. And now we’re hit with this. It’s just so frustrating because she’s overcome so much and rarely complains. The thought of going through more medical stuff with her is very hard to process at the moment. I’m thankful that this condition is not life threatening. Of course it could always be worse but it is hard to watch your kids struggle with medical challenges. I know many of you have kids with various medical struggles so I know you understand. 

[Tsuga]

How awful. We haven't been there but we have close friends whose daughter also had several severe issues. She is also going to miss swim possibly, which is devastating because it's a huge social thing for her. Ours is not a very competitive league--NONE of these kids are going to state with these times, much less college--but they love it nonetheless because it's their thing, so I get that. HTH

[Junie]

(((lexi)))

[Ravin]

I know it's frustrating to have a child in pain and feel limited in what you can do about it. At least the doctor has made a diagnosis that something can actually be done about, and even if there is more pain in the short term because of surgery, hopefully long-term they can heal her so that she will be able to do the things she loves for decades.

[TCB]

26 minutes ago, lexi said:

And I know you all don’t know me or my daughter but this is my child who has had health struggles since birth. She has anaphylactic food allergies and I’ve had to rush her to the ER multiple times when she couldn’t breathe. I’ve held her for hours in the ER praying that she could breathe easily and hat her swelling would go down. She’s my kiddo with asthma who has such a hard time every winter with all the colds and flu junk. I’m up at night with nebulizers trying to help her. And now we’re hit with this. It’s just so frustrating because she’s overcome so much and rarely complains. The thought of going through more medical stuff with her is very hard to process at the moment. I’m thankful that this condition is not life threatening. Of course it could always be worse but it is hard to watch your kids struggle with medical challenges. I know many of you have kids with various medical struggles so I know you understand. 

I don't have any experience with this condition but I just wanted to encourage you that your daughter will probably adapt fairly quickly to the limitations, if she does have to have surgery, and find ways around the limitations to do things she wants, although I know that won't be able to be swimming. My experience with my dd is quite a bit different I guess, but she had congenital hip dysplasia as a baby and was in a hip spica for 6 months. I was a wreck worrying about how she'd adapt and the fact that I wouldn't see her cute chubby baby legs for such a long time. But she just took it in her stride and found ways to do what she wanted. She has since had several other chronic health problems and I have felt really bad that she has had to go through them, so I kind of know what that's like. I hope the inserts and therapy do the trick for her!

[SKL]

I'm sorry and I understand about the sports.  I am not a sports person either, but one of my kids is nuts about her sports.  She doesn't even like to take a break when she has a broken finger or toe.  Sometimes I wish I could will her little injuries to heal faster.  I would be really upset for her and it would be hard to tell her if she had something serious.  Of course it's not the end of the world, but we hate to see our kids disappointed over things they can't control.

I hope you find answers and solutions that put your mind at ease.

[prairiewindmomma]

We've done wheelchair, casts, and full aqua therapy rehab over months with a baby and toddler but under a different set of circumstances. It sucks, I'm sorry.

[zimom]

My daughter has a pretty significant congenital limb issue, resulting in several major operations.  She is also a competative athlete, swimmer.  Fortunately, her ortho always lets her back in the water as soon as possible, much quicker then she is allowed to walk, run or do anythink else on her leg.  So most likely as long as the incisions are healed they will clear your daughter to swim in a chlorinated pool.   

One of the reasons we first put our daughter in swimming is that is so easy on bones and joints.   After you have a good plan in place, just make sure your ortho knows you would like to get her back in the water ASAP for her mental and physical health.  

[plansrme]

2 hours ago, lexi said:

I have never heard of this but I’m going to look it up and ask. Thanks you. 

Look up the "squeeze test."  I think Sever's is pretty easy to diagnose using this test.  

[littlebug42]

I don't have experience with this condition but my daughter was born with a clubfoot that eventually required tendon surgery.  What was valuable to me was that I found an online support group of parents who sought nonsurgical treatment for clubfeet.  Through that, I was able to get names of who the best doctors were for us to see.  Eventually, we started going to an amazing doctor in St. Louis, which is approximately 6 hours from our home but I don't regret the decision for a minute.  All of the doctors closer wanted to do much more invasive procedures and we were able to find a better way.  My daughter is 14 now and has a fully functional, pain free foot, which she likely would not have had if we had not pursued the treatment that we did.  I would research the condition and find out who is the best that you can see and make it happen.  Even if it is only for a second opinion and they confirm what your current orthopedist has told you.  Shriner's orthopedic hospitals are often a good resource to help find treatment.  

[Carol in Cal.]

You might check with Parents Helping Parents to see if there is a support group of parents of kids who have had this illness.

Those are often a real wealth of information.  Also, they may know of clinical trials or of very good surgical specialists that are experienced with this.  I always figure that a surgeon who has done a lot of similar surgeries is better than one who has just read about this in a book.

 

[Melissa in Australia]

I hear you about being sad. ?

twin 1 is having Tibialis Anterior Tendon Transfer  next Saturday. He will be in a  cast and a wheelchair for approx 6 weeks afterwards. He most probably will still have to wear his AFO's afterwards

He will have to be seperated from twin 2 for the first time in his whole life to be in Melbourne to have the surgery. the twins have only had each other as their only constant person in their whole life. We are expecting this to be traumatic to each of them. they will be seperated for a min of 4 days.

He will have to miss out on a few different therapies for the next 2 months . He is an active little 7 year old that needs constant movement. We feel very sad for him.

Twin one has RAD that presents as PTSD that is triggered by needles- the Children's hospital is working with us on this. But last time he had a needle ( immunization ) he was in an alternate conscious stage for 3 days reliving past trauma..... it was traumatic for the rest of us to witness this. very hard on everyone but especially both twins. 

[Chris in VA]

All the best to your little one and to you.

I just had a question--would it be possible to do surgery on one foot at a time so as not to need the wheelchair? It would mean missing more of the sports she loves, but be easier on the mobility, esp since you'll have a newborn in the mix. But I don't know anything about this sort of situation; the closest I've come in my own family was when my not-quite 2yo son had to be casted for 2 weeks because of shortened heel cords (he learned to walk while in the casts, on the Fourth of July!). Kids do adapt. 

[Another Lynn]

(((Lexi)))

[ThisIsTheDay]

It sounds like this has been somewhat ongoing, and I am not familiar with the whole story.

But I want to encourage you--if this is a local pediatric ortho, please, please get a second opinion, preferably from a specialist at a teaching hospital. If that's what this doctor is, please still get a second opinion.

Even specialists will have differing opinions, and you want to know ALL of your options before proceeding. And your doctor should be encouraging you to get a second opinion too. The repurcussions here of making a second-best choice could affect much more than just one season of sports.

 

[mom@shiloh]

Wow. I'm sorry. I'm sure it is daunting to face this, especially with a new baby on the way. 

The 17 yo ds of a friend of mine just went through something like this. I don't think it is the same thing since I'm thinking his had more to do with muscles than bones, but the recommended surgery and recovery sounds the same.  He did one foot at a time and it was a long process. 

For your peace of mind, I suggest you get 2nd and even 3rd opinions. My kids have had numerous surgeries, and sometimes one surgeon will recommend something completely different than another. I'm sure you want to feel confident that you are pursuing the best course and that surgeons agree on a treatment plan.If you don't feel as if you can get other opinions, make sure your doctor has plenty of experience in this area.  I'd also want to ask about long term complications. When is the best time to do the surgery?  How will her growth be affected?  How will growing affect the surgery site? Ask if you can be put into contact with someone else who has gone through this, or find someone on-line. That would have been really helpful to me and I'd love to be able to help other people navigate the same surgeries we've had to go through. 

 

[learning123]

Hello! My experience is null with this specific diagnosis, but I've had the blessing to work with several different orthopedists who have provided care for my daughter and son. There is such a vast difference between them! I would recommend you see a pediatric sports orthopedist if you can. My only reason for saying this is that the first time you saw the orthopedist, the x-ray wasn't clear, he didn't know what was going on, and made a recommendation...My son's sports orthopedist would NEVER have done that- no recommendation without really grasping the issue or digging deeper? The orthopedist has already said several times that issues caught in childhood and corrected properly save so much pain and treatment later on. Common sense, but good for me to be reminded.  On the other hand, my daughter had an ortho years ago who was more laid back, let things progress, and only then passed her on to another ortho with greater experience in her specific problem area. Not so good. My daughter ended up getting good treatment but only after the issue had gotten far worse than it should have. Her ultimate outcome suffered because of this.

My heart goes out to you. Good luck with this.