Hindsight is 20/20 – Looking Back, What Would I Have Done Differently?

We are more than two months post-op and coming up on almost three years since diagnosis and treatments. Naturally, throughout much of this journey, I have had time to reflect on specific experiences. Over the last three years I’ve also gained a great deal of knowledge. Of course, like many difficult roads traveled, there are moments where you think, “I would have done that differently”. Thankfully, at least so far, my list isn’t that long but I do think others can learn from my reflections.

Here’s my list of what I would have done differently knowing what I know now:

1. Comparing. I wish the literature, the websites, the overall information and patient stories I found on infants or young children with congenital scoliosis were more black and white in stating how very different cases of congenital scoliosis were. Most resources provided vague synopses of the disease so I didn’t understand the varying degree of complexities there were. Of course I could recognize the differences in extreme cases but there is still so much in between that.  I didn’t realize how two children’s cases could ‘seem’ so similar yet come to find out much later, they really were very different. That was the hard piece to understand and is worth repeating, cases could seem so similar yet they really were very different.

Early on I tried comparing my child’s case with others that sounded similar and it caused a great deal of frustration because the treatment plans and approaches were very different. It made me question everything but it was also a great way to really learn more.  The fact of the matter is, congenital scoliosis can have such varying degrees of complexities. What seems so similar can, in fact, be very different but it’s hard to understand that or actually see the vast differences unless you are a trained surgeon.

My advice to myself now would be, do not compare your child’s case to another. Ask all the questions, and let your surgeon point out cases that can legitimately be compared.

2. Second Opinions. This one is tricky, ultimately, I think second opinions are very important for congenital scoliosis and even early onset scoliosis. They are both so very rare, and I do think second opinions can be very helpful.

We got our diagnosis when Nora was five months old. I quickly learned this was rare and could be complex. I immediately thought we need to get a second opinion right away. Here’s the thing, we were very lucky to be referred to the surgeon who has been treating Nora since the beginning. He’s has extensive experience and background in congenital scoliosis and early onset scoliosis. He trained at one of the best hospitals for this in the country. We were lucky to have been referred to him from the get-go. I’ve learned many folks are not as lucky. Many are referred to the pediatric orthopedic surgeon who treats adolescent scoliosis and numerous other orthopedic issues, the surgeon who does not see these cases regularly.

Still, I rushed to get another opinion.  The surgeon we saw was the chief of orthopedics at a top 10 children’s hospital in another state.  But this surgeon was just like the one I referred to above. It became clear in the appointment this man did not see congenital scoliosis patients regularly and yet he would have been happy to taker her on as a patient. His recommendations and assessment was extremely different. Looking back, I never should have seen this surgeon. I should have researched more who I was going to see.  Early on I didn’t know the differences in pediatric orthopedic surgeons.  I assumed because this surgeon was the chief of orthopedics at a nationally ranked children’s hospital, surely it meant he knew a lot on EOS and congenital scoliosis. He clearly did not.  He also should have been upfront and referred us to a hospital on the other side of town that specializes in this, but he didn’t and that’s a whole other story.

We got several opinions over time.  We ended up seeing some top experts in different parts of the country and it was helpful but I also think our timing wasn’t the best. With congenital scoliosis you, almost always, are in a ‘wait and watch’ mode. Tom Petty said it, the waiting is the hardest part and it really is when you first get the diagnosis with a young child. The urge is to run out and get those second opinions right away. But here’s the thing, the young growing spine can be unpredictable. There is a vagueness about what to do exactly and when to do it in many cases. I think it’s best to make sure you are seeing the right type of surgeon in the beginning but then wait on second opinions.  Wait till things have progressed and surgery or other forms of intervention are being discussed or when things start to impact the overall health of the child. This is when second and third opinions are going to be the most valuable, I think. The one good thing about congenital scoliosis is there is time. Usually nothing requires an emergency type of surgery or intervention, you have time to figure our who your child should see.

Now, ironically if your child has early onset – infantile idiopathic scoliosis – well that changes things. This is just another example of how different these two forms of scoliosis are. Early onset  infantile scoliosis, in a young child, does not have time on their side usually. The most effective treatment is usually EDF/Mehta casting.  And casting is most effective when started young to maximize the opportunity of rapid growth that is ahead of the child to achieve growth guided correction. If you have a child with this form of scoliosis you need to act fast to make sure you are seeing a surgeon with a great deal of EDF/Mehta casting experience, unfortunately this surgeon isn’t always easy  to find either. There are still many surgeons who say casting is barbaric and the best option is wait, let the curve progress, and do growth rod surgeries later.  That thinking blows my mind.

3. Watching YouTube Videos – When I learned about the surgical options we had, I immediately began Googling. I was mainly lookingwish i knew for peer evaluated published studies on the surgical options. Soon into my searches, YouTube videos popped up that were showing the actual surgeries… like in the OR… right there looking down into the exposed spine. Watching surgical procedures has never grossed me out, in fact, I find them usually fascinating. Many years ago, I actually worked as a veterinarian technician where I got to assist in surgeries and I loved it. But there is something very different about 1. Watching orthopedic surgeries. So much hammering, chiseling, sawing. It’s tough and rough, it’s doesn’t seem as delicate as say watching an open heart surgery. And 2. Knowing that the surgery I was watching might actually be performed on my child adds a whole personal and different element to it. Watching these videos was a mistake. I didn’t watch for long but it was a mixed feeling of fascination, being scared, and feeling sick to my stomach. Looking back I would tell myself, do not watch videos of what your child’s spine surgery will be like. This seems so obvious….I know.

4. Going Back to the OR with my Child for Castings. – Nora was just 14 months old when she had her first cast applied. At the hospital that day, the nurses asked us if we wanted to go with her into the OR and stay while she was put to sleep. We said yes. It was really really hard to hold my child as she screamed and whimpered and fought the mask that slowly put her to sleep. I can still hear her soft whimpers that sounded like nothing I had ever heard from her before or since as she lay barely asleep on the table. It’s too much, too hard emotionally to witness that. But it was too late, we saw what we saw and experienced what we experienced, we felt locked in so we went back into the OR with her for every casting she had. There are times in life where ignorance is bliss. Looking back, I would tell myself not go back into the OR on casting days. The day and process is hard enough as it is.

5. Preparation for Recovery in the Hospital – If you follow my blog, or know me from the support groups, or from everyday life you know I’m usually extremely prepared. I’ve researched and talked to other parents, surgeons, etc, almost obsessively about everything in my daughter’s diagnosis. You would think I would have been fully prepared. But I wasn’t.

Our surgeon expected Nora to be released from the hospital earlier than she was and for whatever reason, I didn’t prepare myself really for the possibility that she would be there longer. I didn’t even pack extra clothes for myself. Looking back I would have prepared myself mentally for the possibility of staying longer.

He also was hopeful she wouldn’t need a blood transfusion, but of course it was a possibility and we filled out all the paperwork beforehand in case it did need to happen. Somehow, again in my mind, I didn’t think she would need one. She did need transfusion a couple days later. I wasn’t fully prepared for that mentally. There’s something about the words “blood transfusion” that seems so scary and horrible but really it wasn’t bad and it was the best thing for her.

Almost all the advice I got from other parents was: the first 24 hours post-op are the hardest. So that’s what I expected. That wasn’t the case  for us. The second day was much harder. Seeing it be harder than what others told me, threw me for a loop and I couldn’t help but let my mind wander and worry that things were not going well. When in fact, everyone’s recovery is different and it’s actually really common for day two to be much harder.

I wasn’t fully prepared for the difficulties we faced in recovery. The harsh realities of the side effects of narcotic pain meds and anesthesia – no one really talked about that with us.  Those side effects were some of the hardest to deal with in the hospital and some of the most heartbreaking.

Looking back, I would tell myself to fully prepare for many of the possibilities that can happen during recovery. I would ask other family’s to talk about the parts no one talks about.  I would ask about every aspect of recovery.  I thought I had but clearly I missed the mark.

6. Asking  Questions – Again if you know me, this one probably seems odd because I ask a lot of questions and have even written a blog post that lists tons of questions, I think are vital to ask your surgeon. But I didn’t ask all those questions in the beginning.  I asked a lot of questions but there were many I didn’t ask, many important questions I never thought to ask in the beginning.  I was just very lucky to have found a great surgeon who, thankfully, would have fit the bill anyway. But many of my questions early on never would have revealed that…we just got lucky.  Looking back, there are probably a dozen questions I wish I had asked early on, I’m thankful we have a great surgeon who would have been able to answer all those questions with the answers I would have been looking for.

Looking back, I would tell myself to research more what questions I should have asked.

Surgery Day- August 25, 2015

Tuesday, August 25th, 2015 5:30am
We arrived at the hospital for check-in. We have been to this hospital for pre-op check in numerous times by now over the last couple of years so it all felt very familiar and …comfortable. We weren’t walking into all of this as newbies. That really helped. It helped with my emotions, fears, and expectations as well as Matt’s and even Nora’s. Nora knew we were here because her doctor was going to ‘fix her back’. She knew we weren’t getting a cast but she didn’t fully know what all was going on either. She was comfortable and even relaxed during all the pre-op stuff like getting height, weight, blood pressure, etc. We sat in the pre-op room and waited. I felt like we were there for a casting which was probably good. I wasn’t fearful or extremely nervous at this point. Like always, interns, fellows, nurses, child life, anesthesia team, our surgeon’s team and even our surgeon were in and out explaining little things here and there and asking typical questions.

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We meet with the anesthesiologist weeks before to figure out our operative plan. Nora has not done well post-op with anesthesia before so this was a big concern for us. We decided on giving her a small dose of valium in pre-op and decided against versed. Nora was relaxed which was really helpful. For this surgery, we could not go back with her into the OR with her like we had before for castings. We were concerned this would upset her so the Child Life Specialist decided to let her take an ipad into the OR with her that was playing Curious George.

Suddenly it was time to go, that part seemed to happen so fast. As the team picked her up and gave her the ipad she immediately panicked, started crying and screaming. The valium was not doing it’s job anymore. She was begging not to go and for us to come with her. I had to dig deep to try and barely hold it together while I hugged her and kissed her sweet scared face. At that moment, I wanted to grab her and hold on to her so tight and just run. But I knew I couldn’t do that. I told her it was going to be ok and that daddy and I were coming and would be right behind her. We would see her in the room in just a minute. I had to lie to try and calm her. It was awful. I hated lying like that. Once she was gone, the tears just poured out and I sobbed a little. I was trying to be brave myself and hold it in but couldn’t. Dr. Garg was in the pre-op room with us when all of this happened, he looked at me and said, “Jackie she’s not going to remember this” he said it twice trying to reassure me. I knew this, but it was still hard. I pulled it together and we all talked for another minute or two and then we walked out to the waiting room.418

There is a spot outside of the actual waiting room, a lounge area, that looks into the waiting room and also has a balcony of sorts that looks down to the hospital’s first floor. This is ALWAYS where we sit when Nora has been in the OR. It’s MY spot. That day I was obsessed about this spot and worried someone else was going to be sitting there. It was as if someone else being there would change everything. What can I say, I’m a Chicago Cubs baseball fan, superstition is a part of who I am. I talked about my concern of someone else being there so much Matt just laughed at me because my obsession was ridiculous. I knew it was too.  But wouldn’t you know, as soon as we walked out there was couple was sitting there, in my spot. I just looked at Matt and he laughed.  We could still sit in the same area but not the same seats. I didn’t like this.

Matt and I decided to go downstairs and get coffees. Getting in the elevator I suddenly felt so exhausted and it was only 7:30 in the morning. It was going to be a long day. I got my fancy latte and we headed back upstairs. When we got back, OUR spot was open. The couple was no longer there. I immediately grabbed all of our things and made a bee line for MY spot. I suddenly felt much better.

428We kept ourselves busy for awhile with facebook and goofy stories online but that was slowly fading fast. I couldn’t read a book; I haven’t read an actual book in almost 3 years because I’m always researching. Now was not the time to try and pick up the latest bestselling novel. I had a pair of rosary beads in an old tiny leather case. They were my grandmothers. I’ve always felt comfort just holding the little pouch in my hand and that’s what I did that morning. I just held the pouch for hours and would often silently recite my favorite prayer, The Memoare. At one point I found my way down to the hospital’s chapel and just sat in there by myself silently for awhile. I thought about how many people had been in this room before me, with much bigger prayers and intentions for very very ill children. And so I prayed for all those who had entered that room before me and all those who would after me.

Only a few hours had passed by now and we were restless again. A nurses in the OR called us every hour to give us updates which were nice but the information given was generally pretty basic. Matt and I decided to go get more coffee and once downstairs we decided to go to the blood donation center. Matt was going to donate. We didn’t think it was a good idea for both of us to donate at the same time and I had eaten anything yet that day. I knew I should have but I just couldn’t stomach the idea of food for once in my life. As Matt was donating, I got a call from the OR nurse saying they would be finishing up soon and our surgeon would be out to see us. I had to go tell Matt to get his heart racing and fill up that donation bag quickly, jokingly of course. I headed back and Matt was soon behind me. When we told Matt’s parents Matt was donating blood, my father-in-law decided to go down and donate too. I’m very proud of both of them for giving back and helping save lives. After all, someone with the same generosity would help save Nora in the days ahead, when she needed a blood transfusion.429

About forty minutes later Dr. Garg came out to speak to Matt and me, he immediately said everything went really well. He said she lost more blood than they anticipated but still in the normal range for what they expect for that surgery. He said they would just keep an eye on her. Then he handed me the piece of paper he had in his hand. It was a copy of her x-ray that was taken in the OR after all the hardware was in place. I became overwhelmed with emotion. Never had we ever seen her spine look so straight. I looked past the hardware and just at the straightness of it all. I was overjoyed.  Dr. Garg went on to say he got better correction than he originally anticipated which was very obvious from the xray. The heavy weight we had been carrying around seemed to lift right then and there. I couldn’t help but lunge over and hug our surgeon and thank him. We talked for a few more minutes and he said we would probably be able to see her in an hour or so.

I was suddenly excited. It was a weird feeling to have at that moment. I never would have thought I’d feel excited immediately after my daughter had major surgery. Soon they called us back to post-op. Then I started to get nervous knowing she has not handled anesthesia well in the past. But when we turned the corner and saw her in her bed awake and not crying and even bigger relief set in.

Her face was swollen, they told us this would happen. She was laying face-down for hours during her surgery, the face is naturally going to swell. Nora was alert but sleepy and soon she was itchy and I mean really itchy. The side effects from the morphine can cause itchiness. She had all these IV’s in her hands but she kept rubbing her face because it itched so much. Our nurse wanted us to try and stop her from itching so much because she was going to scratch her already swollen and tender face with the IV’s poking her. That wasn’t easy at all, she was so itchy, we tried gently rubbing her face with a wet cloth but it seemed the itching was getting worse and our nurse asked a doctor to get a drug to counteract the itching. It took forever it seemed to get the order in for that. In the meantime, Nora had some juice and was watching Curious George and was dosing a little here and there.

432About an hour in post-op we were still struggling with the itching and keeping her comfortable now. Poor Matt got a little lightheaded because he didn’t really get to eat anything substantial enough after giving blood. So we had to get him a juice and cookie too. Thankfully he was fine after that.

By now our nurse wanted Nora to have this medicine that was supposed to counteract with the itching given to her on a slow IV drip. The single dose wasn’t really working. We were beginning to get a little frustrated too. This required our anesthesiologist to come by and see her and authorize the drug. He talked to us a little about the drug but to be honest it’s such a blur, at the time I just wanted her to be comfortable and for us to be able to move up to our room, I don’t even remember what he told us.

Also during this time, Nora’s oxygen saturations were fluctuating a lot. Not uncommon but they needed to increase her oxygen, she didn’t like that either. That was only the beginning too.

Once we were settled into her room and the IV anti-itch meds were going on a drip, she was much better. She had some discomfort early on but was drinking juice and water well. She also had two Popsicles and enjoyed a sucker. She could not make a decision for the life of her though. We brought easily 20 different DVDs and had the tablet loaded up with movies and shows, of course she didn’t want to watch any of those. She finally settled on Charlotte’s Web. We ended up watching that three or four times on repeat that day. That movie will forever be linked in my mind with Nora’s surgery.

She was incredibly tired but fought sleep like nothing I’ve ever seen. Her nurse that day said she had never seen a little one fight sleep so much either. We had to keep shifting her position in bed every couple of hours, she would be on her back or moved to her sides. She had this nice pad under her back that was connected to a cooler that sat under her bed. That cooler was an ice machine. It was loaded up with water and ice and it plugged and kept the ice pack under her back cold for hours at a time, so helpful. She had a folly in and also pressure cuffs on her calves to prevent blood clots. We still continued to struggle with her oxygen levels. They initially wanted her off oxygen around 5:00pm that day. By 8:00pm we had the oxygen canullas taped to her cheeks to hold it in place.437

Nora didn’t want Matt or me to leave the room, she freaked out a little when Matt left to go get water or something. It was understandable and heartbreaking at the same time. She finally fell asleep around 9:00 that night and one of us had to be in the bed with her. But no one really sleeps in the hospital, it seems like someone was coming in every couple of hours for this or that. Nora was insistent I lay one way in the bed with her and I had to be looking at her. She got mad if I closed my eyes, this was around 3:00am. It was a struggle; in essence, Matt and I had been up for 22 hours almost. And the pulse ox monitor would beep every time her levels dropped below 85. The machine was going off a lot. The low oxygen levels could have been from the morphine IV and the injection she had during her surgery and the valium she had been given for muscle spasms. Those drugs can lower the respiratory system. It could also be because of the blood loss she had.

Our first night was a little rough, at one point her pain was really bothering her and she was due or ready to have more pain meds. We had beeped the nurse and asked for it but it was an hour before she came in. She didn’t want to give the pain meds either which I didn’t understand. We were not a fan of this nurse, her communication skills were not the greatest. I found I had to take the lead and ask for things that I would have thought would have been brought up by her initially. The rest of the nurses were wonderful and very very helpful.

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Day two of recovery coming soon….

What Not to Say to a Parent with a Child with EOS or Congenital Scoliosis

One of the things I hear often, in the support groups I’m a part of for congenital scoliosis and EOS scoliosis, is how thankful people are for the support and understanding these groups provide because their own family and friends just do not understand the same way.  Thankfully, most family and friends really do want to be supportive and are well meaning, but often their attempts to be sympathetic, supportive, or encouraging end up doing the opposite: shutting down communication and making a parent feel worse. My husband and I have felt this too. This comes up so much in the groups, naturally, it prompted me to write this entry. So I asked parents to share things that are said that they wish people would not say.  There was a long list that came through but these below were the most frequent. (If you have child with one of these types of scoliosis, you might want to share this with important people in your life, especially if you are new to the diagnosis.)

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“WHAT NOT TO SAY TO A PARENT WITH A CHILD WITH CONGENITAL SCOLIOSIS OR EARLY ONSET INFANTILE SCOLIOSIS”

“I know someone with scoliosis” or even the “I know someone with scoliosis and they turned out fine” and “Oh my neighbor’s 16 year old daughter has scoliosis, she practices yoga to help” Unless those statements includes the words “infantile scoliosis” or “congenital scoliosis” statements like these should not be made. Infantile, Early Onset or Congenital Scoliosis are so very very fundamentally different.  They can be much more dangerous and potentially life threatening.  They can not be compared to the scoliosis you are probably already familiar with.  Even the treatment for these types are significantly different.  The young growing spine is very different than that of a mature or almost mature spine.  And if you are looking at congenital scoliosis, that means there are bones in the spine that never developed properly and they never will.

“At least you caught it early while she’s so young”This seems like the right thing to say and it’s a little tricky.  Catching it early means this is a different type of scoliosis and has a very different treatment plan that can be much more complex. No matter how successful treatment is for our kids they will have to be monitored for their entire childhood and that’s just for those who have responded well to treatment. Imagine what it’s like for those who do not respond well and have complex cases.

“Have you looked into chiropractic medicine, a chiropractor can help and even fix scoliosis” I’ll be honest, this one infuriates me. A chiropractor cannot fix scoliosis! Sadly, there are way too many chiropractors out there who will tell you that they can, in fact, fix scoliosis. What’s even sadder, there are way too many chiropractors who have no real idea what infantile scoliosis is or what congenital scoliosis is.  A chiropractor can help alleviate some discomfort for adults and adolescents with mild to slightly moderate curves, but that’s it.  It can be dangerous to have a chiropractor manipulate the spine of a child with congenital scoliosis, where bones that aren’t formed properly.  Chiropractors can be wonderful care providers for for many other things, but not infantile or congenital scoliosis.

“God only gives people what they can handle”Unfortunately many people really can not handle the stress of really complex medical cases. Just watch the news to see all the people who do NOT handle their medically complex child well  to see that this isn’t true. Most of us rise to the challenge because we have to, not from any per-existing virtue.

“That curve doesn’t look too bad”Because you are a medical expert you know what constitutes a bad curve from a good one? What is a good curve anyway?  Sure a curve might not “look” bad but that’s what’s deceiving, that curve if not treated quickly and properly could grow rapidly — just as fast as a young infant grows. We know you mean well, but it belittles the seriousness of the journey and situation.

“I know just how you feel.” Unless you have a child with one of these types of scoliosis you simply do not know.  Please do not think you do.

“At least there is a surgery for that. I hear about people getting spinal fusions all the time and they are just fine”First off, spinal fusion surgery with rods is a very difficult and complex surgery. Surgeons will often tell you the recovery for a complex spinal fusion is far more difficult than the recovery from open heart surgery. Secondly, you can’t just fuse the entire spine of an infant or toddler. Once you fuse you stop growth at that point of fusion, so that spine would not grow anymore in the areas fused and thus the chest cavity would not grow either, therefore the lungs and heart wouldn’t develop properly.  A infant’s spine that is completely fused would be a death sentence. So then you might say growing rods makes sense, again a very complex surgery that requires multiple surgeries over years and by nature have a 90% complication rate. The physical, emotional trauma of repeated surgeries on little ones is not something to take lightly. Keep in mind a child also has to be ‘big’ enough for growth rods too. As advanced as technology is they still have not been able to create very small instrumentation that works with young, small and soft bones.  Yes, this is the only option for many at some point but this is far from ideal.

“Everything is going to be all right. I just know it” This is often a statement made in hopes of making someone feel better but the reality is you have no way of knowing if it will be alright or not and such a statement ends up sounding like an empty platitude — It simply doesn’t make a parent feel better.

“He will outgrow it” If we took that approach we would be in real big trouble.

“At least it’s not cancer or something serious”  -It might seem like a good thing to say when you are unsure of what to say, but this is actually a very condescending remark and can only add to a parent’s feelings of others not understanding.  Avoid measuring the stress, anxiety, suffering, or discomfort. (And knowing that things could be worse is hardly cheerful news.)

“Have you tried ____ exercise, physical therapy, acupuncture, essential oils, super magic moon crystals, this weird new therapy that I heard about one time but know nothing about? –  We parents don’t want to defend ourselves to you on how we have already tried this or that or don’t trust the efficacy of a certain treatment, especially if your evidence is only anecdotal.

“Did this happen because of something you did in your pregnancy”Asking whether a parent’s pregnancy, genetics, diet or what-have-you led to this is actually rather insensitive.  Blame is the last thing we need.  Just to be clear, the answer to these are NO!

“Well he runs and walks and looks normal. It’s just scoliosis; I’m not sure what the big deal is? There are many diseases out there where people look ‘normal’ and aren’t normal. Just because our kids hit all their milestones and aren’t laid up in bed in pain doesn’t mean this isn’t serious or a difficult road to travel.

“It’s great you can just go to the doctor’s office and have a cast applied so easily” – Having a Mehta/EDF cast applied is nothing at all like having a cast applied for your broken arm. Mehta casts are applied in the OR, under general anesthesia, full intubation, with an entire team of doctors and specialists. Our kids are placed into a complex and very precise form of traction to straighten the spine and address the rotation of the spine. Then the cast is applied to the entire torso, which isn’t easy, it needs to be tight but not too tight. It’s crucial it’s done precisely to protect the chest wall, respiratory function, organ function and more. I could go on and on….this is a pretty big ordeal!

“Why don’t you just get the surgery already” It’s insulting when you think surgery is the best and easiest option.

“They are doing such wonderful things these days, technology is much better today than 20 years ago.” I’ve made the mistake of saying this at times too but even if the prognosis is good, what the parents and child is going through is far from wonderful and this can undermine those feelings.

“So she’s in a cast, she can still have a bath and swim right? You can take that off” – I think every single one of us who have a child in a Mehta/EDF cast has heard this one. It baffles us all and drives us crazy.  It’s a cast, not a brace it doesn’t come off unless you cut it off. Please remember this is a CAST not a brace.

“Why can’t she wear a brace like other girls” – This isn’t mild or moderate adolescent scoliosis. This is a whole other animal. Trust us, if a brace was going to do it and be our best option, we’d all have our kids in braces.

“Why are you traveling so far to see a surgeon, why can’t you just see the local orthopedic surgeon, I’ve heard he treats scoliosis?” – These are very rare forms of scoliosis that generally require a surgeon with vast experience and expertise in these areas. Sadly, there are plenty of great orthopedic surgeons who treat scoliosis for adolescents but do not have the understanding, experience or knowledge for these cases. It would be great if we could just go across town. This is another reason why I wish EOS and Congenital had entirely different names that did not include the word “scoliosis” – which I talk about in another blog here.

“I know your 2 ½ year old is in one of those casts, but he will be alright coming over to a pool party where other kids will be swimming right? He understands he can’t get in and will be fine watching, right? I was downright shocked how many parents in our support group mentioned something along these lines being said. This is particularly cruel. We understand our kids cannot attend all parties and functions because of “cast life” and we don’t expect you to change your plans by any means. What we do expect is  respectfulness and when there are functions where our kids will be there no matter what, do not ask our kids to be mere spectators. This would be hard for an adult to even do, imagine how hard this can be for children who are already going through so much.


Here Are the Things We Wish People Would Say

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When we’re frightened or stressed about our children’s health, advice is often the last thing we want from friends and family. What’s more important is simply being listened to—and knowing that we’re being heard. Try, “Tell me what’s going on, help me understand the differences between infantile scoliosis or congenital scoliosis and adolescent scoliosis, so I can understand your journey just a little better?

Instead of saying “I know how you feel”, a better approach is to ask something like, “How are your mood and spirits holding up through this?” If the person you’re concerned about is anxious or sad, this gives him a chance to tell you how he feels, which can be a big relief to someone who’s trying to pretend he’s doing just fine.

“Educate me, what does casting do that bracing doesn’t, I want to be able to explain this properly to others as well”

Castings, surgeries, even appointments with our surgeons can be far away and require a lot of travel, many have to take air travel to see the right doctors.  Ask, “when is your next appointment? I’d like to help by doing ____?  Many parents have other children that need to be cared for while we are gone. Offer to help with the kids, the dog, make a meal for when the family returns.  Simple things like this can help in more ways than you can know.

Keep in mind that every person is different, and every relationship is different. When in doubt, tread lightly, or even ask how to proceed: “I am here for you, but I’m not sure how to discuss things. Tell me about this condition, what you are going through now, and what you prefer and need.”

There’s a big difference between pity and empathy. And sometimes, you don’t have to say anything. Just being there is enough.


Do you have anything else you wish people didn’t ask? Are there other things you wish people would ask?

How Do You Know You Have The Right Pediatric Orthopedic Surgeon?

Your child has just been diagnosed with the Early Onset Scoliosis. Any time you receive a rare disease diagnosis it can be confusing just trying to understand it and not knowing where to start. Chances are your pediatrician isn’t that familiar with the disease much less the latest treatments. It’s important to understand what Early Onset Scoliosis means and how the condition and treatment for it is vastly different than Adolescent Scoliosis. Early Onset Scoliosis can encompass Infantile Scoliosis (occurring from birth to age 2), Congenital Scoliosis (a structural abnormality in the spine that is present at birth but can go awhile before being detected), Syndromatic Scoliosis (scoliosis brought on by an underlying condition) and scoliosis that sets in between the ages of 2 yrs old and 8 yrs old.

This distinction is incredibly important. Here’s why: The majority of cases of ‘scoliosis’ are adolescent scoliosis. In adolescent scoliosis treatment happens on a very mature spine that is either completely finished growing or very close to being complete. Early Onset Scoliosis treatment happens on a very immature spine that has a lot of growth ahead. That major growth that still needs to occur provides a lot more challenges and changes every aspect of how the disease should be treated. A rapidly growing spine that already has a curve naturally has the ability for that curve to grow larger and faster.

Early Onset Scoliosis is rare. Congenital Scoliosis is even more rare. There are orthopedic pediatric surgeons all over the United States that specialize in ‘scoliosis.’ However, the number of pediatric orthopedic surgeons who have extensive experience in Early Onset Scoliosis and Congenital Scoliosis is much smaller. Let me repeat that because it’s an important statement. The number of pediatric orthopedic surgeons who have extensive experience in Early Onset Scoliosis and Congenital Scoliosis is much smaller.

Over the last couple of years, I’ve connected with more parents than I can count who have a child who has been diagnosed with some type of Early Onset Scoliosis. Unfortunately, some of them have not been seeing the right surgeon because it’s not something that is clear for parents to understand. You can love your doctor’s personality and bedside manner. He or she can have great experience in treating a much older and mature spine but that doesn’t necessarily make him or her the right fit for your child’s EOS diagnosis and treatment. There are many well meaning surgeons out there who treat adolescent scoliosis and then one day the rare Early Onset Scoliosis patient is carried in their door and they are probably intrigued and excited about the opportunity to have a rare case. But if they aren’t up-to-date on current treatments, training, and more or less have extensive experience treating this complex disease of young children, then frankly they are not the best choice.

Early on in our daughter’s diagnosis we sought out a second opinion. We saw the Chief of Pediatric Orthopedic Surgery at a top five ranked Children’s Hospital in the United States. He was the top guy in the department and his bio said specialty with scoliosis and spinal deformities. But it was clear after meeting with him and after doing a lot of research on congenital early onset scoliosis that he was absolutely dead wrong in what his treatment plan was. He didn’t have expertise in early onset and frankly he should have said so and referred us to the proper hospital just a few miles away (a hospital I didn’t even know anything about at the time). He was a ‘nice’ doctor and I’m sure great in other areas of orthopedics that he specialized in but what if we had only seen him and followed his treatment plan?

So how’s a parent to know? Here are some key questions to ask to make sure you are seeing the right type of surgeon: (Note these are not questions that are specific to understanding your child’s diagnosis)

1. Is your background in treating adolescent scoliosis or Early Onset Scoliosis?
2. How many patients have you treated with Early Onset and/or Congenital Scoliosis or how long have you been focusing on the EOS group?
3. What organizations are you involved with that are dedicated to advancement in research, training, and education of EOS? (Be sure to and look up the ones mentioned)
4. How many patients have you treated with EOS? How many do you treat in a year?
5. Do you have training in Mehta/EDF casting? If not, do you back the philosophy/ treatment of Mehta/EDF casting for EOS idiopathic and if appropriate for Congenital EOS, and do you refer patients to surgeons who do have extensive experience in Mehta/EDF casting?
6. Do you support the idea of your EOS patients getting a second opinion? Are there specific surgeons who you recommend for second opinions?

If your surgeon would like to cast or brace: What is your goal for casting/bracing? To cure, or provide some amount of correction through growth or to simply hold the curve to buy growth time?

Nora is in her eighth cast right now and over the past two years I have learned a lot about Mehta/EDF casts. While Nora’s casting goals are different than those with idiopathic EOS I’ve learned a lot about casting treatment for both. I’m not an expert by any means but I have learned enough to know I can go toe-to-toe with the best of the experts. That being said, myself and many other parents who have been deeply involved in the Mehta/EDF casting life, have seen some really bad casts out there. I’ve seen pictures of babies with large permanent scarring on their bodies from poorly applied casts that dug into the children’s skin. I’ve seen casts that had tiny tummy holes that caused the child to throw up several times a day for days on end. I’ve seen casts that were so loose and ill fitting there was no way they could have been effective. I’ve seen casts that incorporate a lot of these things and have caused so much pain for a child that the surgeon’s answer was to prescribe narcotic painkillers to an infant. A properly applied cast should not cause discomfort much less pain. I’ve seen casts that just don’t make any sense at all. Casting is just as much a science as it is an art and there is a learning curve to it.

So if your surgeon is suggesting casting as a first line of treatment how do you know your surgeon is going to apply a proper cast? Here are some important questions to ask:

1. Have you been trained in Mehta/EDF casting? Where did you receive this training?
2. How long have you been casting?
3. What materials do you use to apply a cast? (Typically they are made of plaster and often have a fiberglass layer on top. If your surgeon just uses fiberglass and not plaster ask why? Be sure to ask if they have patients that had success in casting with fiberglass only)
4. Does the hospital have the proper casting table that’s specific to casting an infant/toddler and/or young small child? What kind is it? (This is extremely important and be sure to look it up or check with others to make sure it’s a proper table)
5. Will the cast have shoulder straps? (More and more surgeons who are casting do not use the straps. The shoulder straps are needed when the apex of the curve in the spine is anywhere from T-8 and above. However most idiopathic curves are below T-8 but there are some surgeons who no matter where the curve is, will only apply casts with shoulder straps and that’s perfectly ok too. Some of the best looking casts I’ve ever seen come from surgeons who have been doing this a long while and only use shoulder straps.)
6. Can you show me pictures of casts you have applied?
7. Can you put me in touch with any former or current patients who have or are casting to hear their experiences?
8. Have you had to remove casts early because of structural or application issues that have caused problems? If so why? And how often has this happened?

And here’s what a properly applied cast should generally look like:

blog casts 1blog cast 2

blog casts 1.2blog casts 2.2

• The cast should start at the chest and wrap all the way around the back. It should lie just under a child’s arms and be about three inches above the shoulder blades. This upper half of the cast should be snug but not too tight. It should not be loose at all.

• Most casts should have a small, SMALL, “D” shaped hole in the back on one side. Now the “D” hole in some cases aren’t necessary, generally if there is little to no rotation in the spine a hole on the back isn’t needed but that isn’t common.

• The front of the cast should have a wide, I repeat WIDE, tummy opening. This allows for proper growth of the ribs/chest wall cavity. It also is necessary to allow the digestive system to expand and contract naturally. A small opening is worrisome and something we are seeing more and more of. If you see pictures that show casts with small tummy holes ask why?

• Now the literature supporting mehta casting says the front tummy hole should not only be wide but also hourglass shaped. Where the “sides” tuck in around the rib cage to support it. That being said, I have seen many casts that just have a LARGE round tummy hole. There is one facility that is very reputable and is considered one of the best places for EOS and Mehta/EDF casting treatment and their casts don’t have the hourglass shape but do have the large round tummy hole. Some surgeons seem to be customizing the tummy hole depending on the location and severity of the curve. If the pictures of casts the surgeons shows you are not consistent in shape and design, ask about the benefit of the changing shapes and what your child’s cast will look like.

• The bottom of the cast should have a snug bar that wraps around the belly and to the back. There should be a snug “nip” at the waist of the cast as well.

 

The Curious Incident of the Bucket of Sand and the EDF Cast

If you have a child in an EDF/Mehta cast you know there are a few innocent, even wonderful things that are now looked at as products of the devil himself: water, wood chips, rocks and sand. Thanks to a child who was old enough to know better, we came face-to-face with that devil called sand.  To say I was not happy was an understatement.

shocked_face

A bucket of sand was dumped all over Nora’s head. Sand quickly made its way all over inside her cast. Sand inside a cast is the equivalent of shards of glass if it remains in there. Children have had to have casts removed early because of sand. It can quickly break down the skin which can be a big problem and delay casting. Skin has to be in good condition to be casted.

shocked-face 2

So anyway, we rushed home to try and fix the problem.  I did everything I had heard to do when something is in a cast that shouldn’t be. We removed her knit rite under shirt, I wiped away as much sand as I could, I used a hair dryer on the cool setting to try and blow it out, I “flossed” the cast with pantyhose and wipes. I thought we were ok till that afternoon when I looked again, still so much sand everywhere and her belly was red from it.

It was then when I inquired with my online support group family of what to do. That’s when baby powder also known as talcum powder was suggested. Our surgeon was also quick to get back to me with the same baby powder suggestion.

Let me tell you folks, your very first step after removing as much sand that you can visibly see, is to pour baby powder into the cast from every angle be generous. Then I found a gentle little twist and shake of my sweet Nora helped really get it in there. The baby powder has this magical way of adhering to the sand and releasing it completely from skin. My next step was to use the hair dryer on a cool setting to blow it out. That was it, the sand was gone!

Here’s what I recommend NOT DOING:

• DON’T do any type of flossing when sand is involved, it just rubs the sand into the skin or pushes it into the padding.
• DON’T use wipes either, you don’t want to get the sand wet.
• DON’T panic and take the cast off, you might be able to save the day.

 

Why I Wish Early Onset Scoliosis Used Any Other Word Other Than “Scoliosis” In Its Name

As soon as someone outside of my new Early Onset Scoliosis Support Family learns my daughter has EOS, they almost always tell me how they know someone with scoliosis. Which isn’t surprising, one in forty people have some form of scoliosis. The key words there are some form.

Most people don’t understand how vastly different Early Onset is from scoliosis that develops in adolescents (the most common form) and adults. Heck I didn’t at first either; the first place I went when we got the diagnosis was The Scoliosis Research Society of the US; which in my opinion is an extremely disappointing organization. The majority of the information they have on EOS is INACCURATE or very outdated. It took me awhile to learn that because why would anyone question an organization that large and with that much authority? It’s an embarrassment and is a huge disservice to patients with EOS and their families looking for information. Much of the information they have on Congenital Scoliosis is also outdated and inaccurate.

But I digress… Why is early onset scoliosis so different from the other forms (and I’m not even getting into where Congenital Scoliosis fits in all of this)? To put it simply…it’s the most difficult orthopedic condition to treat in children. It’s also has the potential to be fatal.  When a curvature over 20 degrees develops in the spine of an infant that is naturally growing at rapid speeds it going to get worse and can impact heart and lung development. Surgery at such a young age will also negatively impact the overall growth of the spine and child not to mention heart and lung development. These things generally cannot be said to the same degree when speaking of scoliosis in adolescents and adults.

The seriousness and vast difference is in part why I wish EOS had some other name. Because everyone knows someone with scoliosis, again, it occurs in one in forty people, and the large numbers of those are living with mild forms and are able to manage their scoliosis and that’s what people often associate scoliosis with.

I’m just a mom who is trying to take this diagnosis we were handed and find ways to educate the world, help others along their journey with this diagnosis, and ultimately make a difference. Knowledge is power. Now if only the Scoliosis Research Society could get on board too.

11

Everything You Need to Know About Life in a Mehta/EDF Cast That Your Doctors Won’t Tell You

It took several casts before I learned all the ins and outs of what you really should know about your child’s life in a Mehta or EDF cast for early onset scoliosis.

What To Bring To The Hospital on Casting Day:

  • Two sets of clothes, loose, stretchy, and comfy and a size or two bigger. Avoid the onesies at the hospital. T-shirts and stretchy pants are ideal.
  • Favorite blanket, stuffed animal or toys. We have also found it to be a little helpful to have a brand new toy or something to give to our child once in recovery. Our daughter has an extra tough time coming out of anesthesia and sometimes that balloon or new Elmo doll have helped by being good distractions.
  • DVD player or tablet are always helpful and good distractions
  • Extra milk, juice, and crackers and other snacks along with their favorite bottle or cup, mainly for the journey home. When you are able to give your child water or juice in recovery, they might prefer it in their own cup or bottle. Mine always has.
  • Large waterproof bibs. Vomiting is not uncommon while coming out of anesthesia and you won’t want to deal with vomit and a new cast.
  • Gas Drops – most kids have a bit of a tough time coming out of anesthesia. The anesthesia causes gas to build up in their little tummies and can be painful and difficult to get out. The infant gas drops with simethicone help aid in relieving that gas. Be sure to consult with your doctors and nurses in recovery before administering. This tip many have found extremely helpful.
  • If your child seems to be having a tough time with vomiting and/or you see that it’s a problem after every cast, be sure to ask your doctors and nurses about the drug Zofran to help with nausea and vomiting.
  • Tylenol – just in case
  • Snacks and drinks for you and your significant other. While you probably won’t want to eat, I recommend having at least a little something to eat while your child is in the OR. It can be a very long day emotionally as well as in simple hours. You might not get the opportunity to eat yourself for a long time and you will need your energy.
  • Depending on your surgeon and where you live, your child’s casting materials could be simply made of all plaster or plaster with a fiberglass layer on top. In some circumstances if your child has a curve with a low curve degree you might be able to have a waterproof cast for a time period over summer – there are many pros and cons to the waterproof cast and should be discussed with your doctor. Back to the typical casts, they are generally padded on the edges and taped with moleskin and then secured with tape or coban. You can purchase fancy printed duck tapes (get the Duck Tape brand – the Scotch brand is not sticky enough and doesn’t adhere well) and coban to give your child’s cast some fun “flair” . I’ve heard you can even use fabric and modge podge to decorate a cast. That is something you’d want to do at home though.
  • If your child has a knit rite shirt on underneath the cast and it can be removed at some point if it’s not cut and taped to the cast.  Some surgeons cut it and tape it making it so you can’t remove it.  If yours isn’t cut and taped, get an extra shirt from the hospital. Being able to remove that shirt and wash it is highly beneficial for multiple reasons. At least that’s what we have found.  It’s not as difficult as it seems either. Here’s a video on how to go about changing that shirt. If your hospital and/or insurance won’t cover extra shirts you can order them here at a very affordable rate  (scroll all the way down)
  • This is a big one, before you leave be sure you and your nurse and/or casting technician examine the cast to make sure it’s trimmed properly. Check while holding your child and also while your child is sitting. Check to make sure it isn’t too long and hits the hips or legs too much when sitting. Also check the chest bar to make sure it isn’t too high when your child is sitting and it doesn’t hit or come to close to their chin. Make sure it’s not too high under their arms and your child is able to put his or her arms down comfortably.
  • ** If you aren’t lucky enough to get an early casting time and are stuck with a mid-day to afternoon casting.  Many, including us, have found it’s helpful to let your child stay up late, as late as they can and give them food and drink late as well and then let them sleep in as late as possible.  This will help with their desire for food and drink which they can’t have hours and hours before casting.  Late night cookies and ice cream – whatever it tales to fill their little bellies really helps.

What To Expect The First Couple Of Days In The First Cast:

I’m not going to sugar coat it, the first cast can be very hard, for everyone. Even after you read all of this and prepare as much as you can, it’s really hard to know what exactly it’s all like.

  • Don’t be surprised if your little one is upset, uncomfortable, and hard to console, grumpy or frustrated. And if you’re lucky, your kiddo might just be a little uncomfortable and not show it as much. However your child reacts, it’s normal and TEMPORARY. Kids are super resilient. I’m continually amazed at how resilient they are.
  • Their balance might be off not only from the anesthesia but they have also just had their spine twisted and rotated into a straighter shape, it could take a little bit of time for your child to adjust to their new balance. Anesthesia can also cause them to be a little loopy for several hours and that too can throw their balance off.
  • Some kids struggle more than others at first to walk, crawl or just plain get around but don’t worry they will. The casts can weigh between 2-4 pounds! That’s a lot of weight on little ones! But  don’t be surprised if your little one develops super strong legs by time that first cast comes off.
  • In some cases, casted children need to relearn, or  invent new ways to maneuver. For example, getting up off the floor can be difficult or bending over to get an object was difficult but like I said these kiddos are pretty resilient and most will find new ways to accomplish tasks at hand. Be patient and help guide them when they are trying new maneuvers.  If at any point you are concerned your child is having too much difficulty or not being able to do things they used to, don’t hesitate to contact your surgeon or nurse.  That’s what they are there for.
  • Sleep can be tough the first few nights. The first night of a new cast we have generally had Nora sleep with us, that’s probably more to put our own minds at ease. We also have a standard sized adult memory foam pillow in her crib which she prefers to sleep on with her head and half of her back on the pillow. Many kids find a bigger pillow more comfortable.
  • Don’t be alarmed if your child doesn’t seem to eat as much as they did before the cast in a sitting. Those casts are designed to be nice and snug so it makes sense for a child to feel fuller faster in a cast. We have found smaller more frequent meals help.
  • Don’t worry, in a few days your child will be back to doing almost all the things they were before. And you will find a big huge smile on your face when that happens.  Here’s what my Nora was like just a few days later http://youtu.be/ueeOTdRFt2o

What To Have On Hand At Home & What To Do To Prepare For Casting Life:

  • Moleskin – you will need this if and when any current moleskin becomes loose or wears of the cast. You will also need it if you find an area becoming tight and causing some redness to your child’s skin. Adding extra padding and protection will help.  Ask your surgeon or casting technician for extra when you are at the hospital
  • Aquaphor – Our surgeon advised us to use this every couple of days on our daughter’s skin under her cast. We squeeze some fingers in there and try and get a good layer on. It helps keep her skin smooth and from drying out or being prone to sores
  • Extra duck tape or coban
  • If minor skin breakdown occurs, add extra moleskin to the cast in the area where the skin is red or is beginning to blister.  Use Mepilex bandages (these are hard to find in drugstores but are available on Amazon) on the sore or blister type band-aids. Be sure to keep the rest of the skin well lubricated with aquaphor to help prevent further skin issues.
  • Aviation style tin snips in the strongest gauge possible. And in addition, you should watch a video on how to remove a cast with tin snips. I say this in case of an emergency and you have to get that cast off fast. It’s better to be prepared and know what to do in an emergency than to panic and scramble. Since writing about this here, this now something our surgeon suggests to all his new casting patients. Also, if you choose and/or are given the opportunity to remove your child’s cast yourself you will need these. We have found removing the cast ourselves to be a big help in so many ways. More on that later.
  • Speaking of emergencies – talk to your doctor about what you need to know and what you should do in certain emergencies. There are many opinions and advice on CPR and chocking/ Heimlich maneuver approaches to children in casts.
  • Many families have found beanbag chairs to be very helpful for the newly casted children to help them with positioning and comfort.
  • The smaller convertible infant car seats might not work well once your child is casted. They might be too big for the seat or it could hold them in an uncomfortable position where the cast rubs. The Britaxx Roundabout had been recommended to us from other parents. I’ve also heard some hospitals have various car seat models on hand specifically for infants and toddlers in casts and will loan them out.
  • In the event your child shoves something he or she shouldn’t down his or her cast like rocks, food or toys and you can’t reach it with your fingers, the best way to get them out is to first remove the knit rite shirt and see if that does it. If it doesn’t, you will want to thread a pair of panty hose vertically through the cast and “floss” the cast up and down all around. That should pull the little things out. This ‘flossing’ method is also great to use if your child has an itch that just needs to be scratched a little.  If it’s dirt or sand you are trying to get out try using a hair dryer on a cool setting.
  • If you are planning any travel with your kiddo, even car travel that’s a good distance, be sure to bring your “cast upkeep” goodies with you.  Including an extra shirt (if your cast uses a removable shirt) moleskin, duck tape, wipes, a bib, and of course your tin snips.  This was a great tip from a mom whose child got car sick and they weren’t close to home. She learned this one the hard way.

Diapering:

  • Every child is different and every cast can fit and be a little different which can affect diapering. What works for one child might not work others.  Diapering can be a bit of trail and error.  Here are the tips many others have experimented with.
  • Huggies Overnights –just for nighttime diapering. These suckers hold a lot and one of the last things you want to worry about is a diaper leaking up into the cast and having to clean/dry that. We’ve found this to be the best brand.
  • Even regular day time diapers could have a tough time staying up and in place.  You might have to try going back down a size to get a good fit.  Or you might find you have to fold the top over in the back and in the front to fit under the cast and then secure nice a snug.
  • If you find you are having fit issues and/or leakage problems experiment with diapering options. Many moms have remarked that pull-ups stay on better than diapers and I’ve heard a few mom’s swear cloth diapers was their best solution. Some have found using a shoe horn to help push the back of the diaper into the cast in the back to make it secure helps.
  • Poise pads or other feminine pads can be added to diapers for even extra leakage protection and are also a good idea to use in the back of a diaper if your child has any stomach or intestinal illnesses, to help avoid the potential diaper blow out up into the cast.
  • If your child has a diaper leak or gets his or her cast wet try drying it out as best you can with towels or a shammy and use a hairdryer on a cool setting off and on as much as you can.  If you have a knit rite shirt that’s removable, take it off and wash it. If yours doesn’t come off, pull it down below the cast as much as you can and lightly wash with soap and blow dry.

Sponge Baths:

Sponge baths can be a challenge for some especially my child, even after five casts she still despises the sponge bath and so do we.

  • We have tried multiple ways to go about the sponge bath. We were lucky in that she didn’t have much hair for the first 4 casts so we didn’t feel compelled to have to wash her hair with every sponge bath. At that time, we would set two towels in front of the TV (and in the winter fireplace). Get two large Tupperware containers of water. One for soapy water the other for rinsing. We would lay her down on the towel and wash all her exposed skin as quickly as we could and rinse and dry simultaneously. Now we lay a towel down on the kitchen counter, lay her on top of it lean her head over the skin and use the hand held nozzle to wash her hair.
  • Many mom’s have found success great success with no rinse shampoos,  cloths, washes and shampoos, something I think we will try when we get cast number 6.
  • There’s even a fellow scoliosis mom who found the Norwex brand of personal care products including their super absorbent microfiber cloth that picks up water, dirt, bacteria, etc. with no need to rinse to be so helpful she now sells for the company!  If you are interested contact her at wagoner518@gmail.com.
  • The Belly Button- If your child’s cast covers their bellybutton a little it’s not uncommon for moisture to build up in this area and yeast to form.  Don’t worry, it’s not harmful although can have a foul odor.  If you can, pull the shirt back (if there is one) and clean the belly button every day or two with soap and water.  We found q-tips to work great. If it is red and irritated a little aquaphor should help too.

Breastfeeding Tips for Your Casted Child:

  • Yes, you can still breastfeed your child.  Many mama’s have found the cast to be abrasive on mom’s skin – rubbing it raw.  To avoid that breastfeeding moms have suggested the importance of taping the cast. Tape will prevent your skin from rubbing raw.
  • Depending on your casting facility, some want you to wait a few days before taping the cast, in the mean time try breastfeeding with a layered nursing shirt or cami so there isn’t skin to cast rubbing.
  • Be sure to check with your surgeon about breastfeeding (fluid intake) instructions before each casting.  Breast milk is considered clear fluid and has different time restrictions than cow’s milk.
  • Many moms recommend having a support person with you the day of casting. someone who is willing to hold and distract your  child who might be desperate to nurse and doesn’t understand why mom will not let him or her.
  • You will be allowed to breastfeed your child in post-op after your child has been casted.

How to Handle the Summer Heat In A Cast:

  • Overheating and heat rash can be very serious in any child let alone one in a body cast where their little bodies have a tough time regulating heat
  • Consider investing in a cooling vest (http://www.noeledfcastframe.com/2012-09-27-16-54-53/accessories) – these little numbers are custom made and will most likely last the entire time your child goes through the casting process, best of all they are affordable. These vest hold special ice packs to help keep your child cool.  They last for about 2 hours before needing to be refrozen.  The vest is safe and easy to use too. They weight less than a pound and a half and should last at least 2 least two years of casting or more. Here’s a picture of one:
  •   cooling vest
  • It’s important to talk to you daycare provider and/or school because most casted kids can’t handle being out in weather over 80-85 degrees for much more than 20 mins or so at a time. Overheating and heat rash can be serious complications.
  • Want your child to experience the fun of running through a sprinkler like other kids? Well you still can. I’ve seen many parents share pictures and stories of using garbage bags and cutting holes in them for legs and feet to protect the cast while allowing them a little fun.
  • And of course lots of fluids, breaks and indoor crafts and activities so they are never bored.

 

At Home Cast Removal: 

  •  Once we learned about at-home cast removal our lives really did change for the better.  I wish we had learned about it sooner.  Here are some tips on how to go about doing this.
    –   First, watch a video.
    –   I think the best time to do it is in the morning when your child’s tummy isn’t full and is the ‘skinniest’.
    –   Lay your child down on their back by the TV or something to distract them with your hands and scissors any tape and moleskin   around the middle of the chest, bar, the belly bar and the tops of the shoulder straps if you have those.
    –   With the plaster or fiberglass top exposed slide your hand under the top chest bar between your child’s skin and the cast.
    –   Gently take small ‘snips’ to the cast.  Start with the belly bar.  It will take some force.  Be sure not to push down with the snips to apply pressure and in turn push on your child’s chest or tummy.  Do the chest bar next and then a shoulder strap.  By then your should be able to pull the cast part and your child should slip out.
    –   It sounds complicated but it’s really not.  Takes less than 5 mins.

 

Do you have any other tips on how manage day-to-day life in a cast?

 

Todo lo que necesitas saber acerca de la vida en un yeso y que tu Dr. no te dice

 Me tomó varios yesos antes de aprender los ins y outs de lo que realmente debes saber de la vida de los niños en un yeso Mehta o un yeso EDF para escolisis infantil.

¿Què llevar al hospital el día del yeso?

-2 juegos de ropa: suelta, elástica y confortable y una talla o 2 más grande. Evita los camisetas de una pieza. Camisetas y pants elásticos son lo ideal.

-manta, peluche o juguete favorito. También hemos encontrado útil llevar un juguete nuevo o algo que darle una vez que está en recuperación. Nuestra hija tiene un momento duro después de la anestesia y algunas veces un globo o un nuevo Elmo ha ayudado a distraer.

-DVD o una tablet son siempre útiles y buenas distracciones.

-jugo extra, leche y galletas así como otros bocadillos junto con su taza o mamila favorita son útiles para el regreso a casa. Cuando te permiten darle agua o un jugo en recuperación ellos prefieren su taza o botella.

-Baberos largos contra agua : el vomito no es algo extraño al salir de la anestesia y no querrás lidiar con vomito sobre un yeso nuevo.

-gotas para gases: muchos niños tienen dificultad para salir de anestesia. La anestesia causa gas en sus estomaguitos y les puede costar trabajo sacarlos. Las gotas infantiles para el gas con dimeticona ayuda a aliviar las molestias del gas. Asegúrate de consultar con tu doctor y enfermera antes de adminístralas. Este tip resulta muy útil.

Si tu hijo parece tener dificultades vomitando después de cada yeso, puedes pedirle a tu doctor o enfermera que le den Zofran para ayudar con las nauseas y vomito.

-lleva tylenol

-lleva un refrigerio y algo de tomar para tu pareja. Aunque probable te no tengas hambre mientras tu hijo esté en Quirófano debes tratar de comer algo. Puede ser un día muy largo y emocional.

-dependiendo de tu cirujano y donde vivas, el yeso de tu hijo estará hecho ya sea de puro yeso o con fibra de vidrio como cubierta. En algunos casos si la curva de tu hijo es baja podrán ponerle un yeso con material resistente al agua por algún periodo de tiempo -verano-. Sin embargo hay muchos pros y contras que deberás discutir con tu Doctor. Referente a los yesos típicos, estarán normalmente acolchonados en las orillas y cubiertos con “moleskin” y asegurado con cinta. Puedes conseguir duck tape con decoraciones de la marca Duck tape (la de Scotch no pega bien) o usar cinta coban. Incluso he visto casos donde usan tela o usan modgepodge para decorar el yeso. Pero todo esto son cosas que te gustará más hacer en casa.

-si tú hijo tiene una camiseta debajo del yeso y no está pegada o cortada, esta podrá cambiarse en algún momento y puedes pedir otra extra al hospital. Ser capaces de cambiarla y lavarla es muy bueno por muchas razones. Al menos es lo que hemos encontrado. Tampoco es tan difícil cambiarla como parece. Existe un vídeo que te explica cómo cambiarla. Si tu seguro o tu doctor no cubre playeras extras puedes encontrarlas a un precio muy razonable en línea

-esto es muy importante, asegúrate de que la enfermera o el Dr. examiné bien el yeso de tu hijo y que éste se haya sido cortado adecuadamente. Revísalo mientras lo cargas y lo sientas. Checa

Que no esté muy e largo u le roce la cadera o sus piernas mientas está sentado. También checa que la barra del pecho no este muy larga mientras se sienta y que no pegue con su barbilla . Verifica que no este muy alto en las axilas y que pueda colocar sus brazos abajo cómodamente.

Si no  tienes suerte de tener programado el yeso muy temprano y lo tienes a medio día o en la tarde. Muchos padres, incluyéndonos, hemos encontrado muy útil dejar que una noche antes tu hijo se duerma lo más tarde posible, darle algo de comer y beber. Ya que esto calmara su deseo de pedir comida o algo de no tomar, lo cual no puede. Hacer antes del yeso. Galletas y helado nocturno puede ayudar.

¿Qué esperar los primeros días con el primer yeso?

No voy a endulzar el proceso, el primer yeso es difícil para todos. Incluso después de leer esto y estar tan preparado como puedas, es muy difícil saber realmente como va ser.

No te sorprendas si tu hijo está alterado, incomodo, difícil de consolar, de mal humor o frustrado. Sí corres con suerte quizás tu hijo solo este un poco molesto y no lo demuestre mucho. Sin embargo, la reacción de tu hijo es normal y TEMPORAL. Los niños son muy resilientes. Yo continuamente me sorprendo.

Pueden tener problemas con el balance a causa de la anestesia pero también debes tomar en cuenta que su columna acaba de ser torcida y rotada a una forma mas derecha, así que tomara algo de tiempo para que tu hijo se ajuste a su nuevo balance. La anestesia puede causar que este un poco adormilado y fuera de balance horas después de aplicarla.

Algunos niños tiene más problemas que otros para caminar, gatear o hacer su vida normal pero no te preocupes esto pasara. El peso del yeso varia entre 2-4 libras. ¡esto es mucho peso extra para nuestros niños! Así que no te sorprendas si tu hijo desarrolla piernas muy Fuertes una vez que le quiten el primer yeso.

En algunos casos los niños debe de re-aprender o inventor algunas nuevas formas de maniobrar. Por ejemplo, levantar cosas del piso o inclinarse por un objeto puede ser difícil al inicio pero estos niños son tan resilientes que la mayoría encontrara la forma de hacerlo. Sé paciente y ayúdalos a guiarlos a encontrar nuevas formas de hacer las cosas. Sí en algún punto estas muy preocupado porque tu hijo esta teniendo muchas dificultades para hacer las cosas que normalmente hacía contacta a tu doctor o enfermera, que para eso están.

Dormir puede ser difícil las primeras noches. La primera noche en un yeso Nuevo, normalmente dejamos que Nora duerma con nosotros y así estamos más tranquilos. Nosotros también tenemos una almohada tamaño estándar para adulto de memoria en su cuna en la cual ella prefiere dormir. Muchos niños encuentran más cómodo dormir en una almohada más grande.

No te alarmes si tú hijo no come tanto como solía hacerlo en antes de traer el yeso. Estos yesos están diseñados para ser suaves y abrazarlos y eso da una sensación de sentirse satisfechos más rápido. Comidas pequeñas más frecuentes ayuda mucho.

No te preocupes demasiado, en algunos días tu hijo estará hacienda las cosas que hacia antes. Y te verás con una gran sonrisa en la boca cuando eso suceda.

 ¿Qué debes tener en casa y qué hacer para prepararse para vida en con un Yeso?

Moleskin: (protector de pies para zapatos) Vas a necesitar tenerlo por sí se zafa alguno o se ensucia. Puedes usarlo para las áreas donde esta más a apretado causando alguna irritación- Sirve para tener más protección y suavidad del yeso contra la piel. Puedes pedir más a tu cirujano o técnico de yeso cuando estás en el hospital.

Aquaphor: Nuestro cirujano nos recomendó usarla cada 2-3 días en la piel de nuestra hija bajo el yeso. Nosotros metemos los dedos como podemos y tratamos de poner una buena capa. Ayuda a tener la piel suave y evita tener erupciones.

Extra duch tape o coban

Si una erupción menor ocurre, puede poner extra moleskin en el área donde se está irritando. Puedes usar banditas de Mepilex (éstas son difíciles de encontrar en las farmacias pero las puedes conseguir en Amazon) y ponerlo directo en la irritación. Asegúrate de tener el resto de la piel bien lubricada con aquaphor para prevenir problemas de piel.

Baberos resistentes al agua de varios tamaños, los extra largos con mangas son muy buenos para que tu hijo pueda tener un tiempo de jugar con agua.

Pinzas de estilo de aviación de mayor fuerza posible y como complemento debes de ver el video donde te explican como remover un yeso con estas pinzas. Esto es en caso de alguna emergencia donde debas quitarlo. Es mejor estar preparado y saber que hacer en caso de una emergencia que entrar en pánico. Esto es algo que nos sugirió nuestro cirujano. Incluso, si escoges o te permiten remover el yeso de tu hijo necesitaras saber todo esto. Nosotros hemos encontrado muy bueno en muchos sentidos quitarlo nosotros mismos.

Hablando de emergencias, habla con tu doctor acerca de lo que necesitas saber en caso de algunas emergencias. Hay muchas opiniones y consejos acerca de cómo hacer CPR y atragantamiento o maniobra de Heimlich con niños con yeso.

Muchas familias han encontrado muy útiles las sillas tipo beanbag para darles confort a sus hijos.

Las sillas para infantes de carro pequeñas no funcionan para los niños con yeso. Ellos necesitan una silla más grande y cómoda para evitar que el yeso los roce. La silla BritaxxRoundabout ha sido recomendada por muchos padres. Incluso he escuchado que en algunos hospitales les prestan sillas especialmente recomendadas y probadas para niños con yeso.

En el caso que tu  hijo se haya introducido algo a su yeso como piedritas, comida, juguetes y no puedes alcanzarlo con tus dedos, la mejor manera de removerlo es primero quitar la camiseta y ver si eso ayuda. Sí eso no ayuda, puedes utilizar unas pantimedias de manera vertical como si estuvieras usando hilo dental por todo el yeso. Eso deberá sacar lo que fuera se hubiera quedado ahí. Este método de asemejar el hilo dental con la pantimedia puede ser muy útil para calmar la comezón. Sí es tierra o arena lo que tiene adentro también puedes usar una secadora de pelo con aire frio.

Pañales

Cada niño es diferente y cada yeso puede ser diferente a otro y esto afectara la manera en que uses el pañal. Lo que me funcione a mí puede que no funcione para otros. El tema del pañal es algo más de “prueba y error”  pero aquí hay algunos tips que han experimentado algunas mamas.

HuggiesOvernights-sólo para la hora de dormir. Estos pañales absorben mucho agua y ayudan a no preocuparse por fugas nocturnas.

Incluso los pañales normales del día puede ser un problema que se queden en su lugar. Quizás puedas intentar tener una talla más chica para tener un mejor ajuste. O quizás te podrá ayudar doblar la parte de arriba y meterlo debajo del yeso.

Sí sigues teniendo problemas de fugas experimenta con varios pañales. Muchas mamás han encontrado mejor el uso de pull ups que los pañales regulares, incluso hay algunas que dicen que los pañales de tela funcionan mejor. Algunas usan un calzador de zapato para tener mejor ajuste del pañal debajo del yeso.

Almohadillas  para absorber humedad o toallas femeninas pueden agregarse a los pañales para tener una mejor protección e incluso son buena idea para usarlos como una protección extra si tienen diarrea o algún otro problema intestinal

Sí tu hijo tiene alguna fuga en el pañal o se moja el yeso trata de secarlo lo mas posible con una toalla o con la secadora con temperatura fría. Si tienen una playera removible quítala y lávala. Si no se puede quitar jala la playera lo más que puedas, lávala y sécala con la secadora de pelo.

Baños de esponja:

Los baños de esponja pueden ser un reto, especialmente para mi hija que incluso después de 5 yesos odia los baños de esponja y nosotros también. Hemos tratado múltiples maneras de hacerlo. Fuimos afortunados de que no tuvo mucho cabello los 4 primeros yesos así que no teníamos la necesidad de lavarlo cada baño de esponja. En ese momento, nosotros poníamos 2 juegos de toallas frente a la TC (o frente a la chimenea en invierno) poníamos 2 contenedores de agua grandes, uno para agua con jabón y otro para enjuagar. La acostábamos en las toallas y la limpiábamos en las áreas de piel expuesto lo más rápido posible. Ahora ponemos unas toallas en la cocina junto a lava trastes  y hacemos que incline la cabeza para lavar su cabello. Muchas mamás han encontrado muy útiles los shampoos en seco y toallas de limpiezas.

Incluso hay una mamá que han encontrado la marca de Norwex muy útil incluyendo la microfibra súper absorbente que recoge agua, mugre, bacterias etc sin necesidad de enjuagar, puedes contactarla a ella en wagoner518@gmail.com.

Sí tu hijo tiene el ombligo cubierto no será raro que desarrolle algún tipo de humedad o levadura. No te preocupes no es dañino y tiene un olor raro, dulce. Sí puedes y tiene camiseta trata de levantarla y limpia su ombligo con agua y jabón una o dos veces al día. Los q-tips sirven de maravilla y sí esta rojo o irritado un poco de aquaphordebe de ayudar,

Tips para amamantar a tu hijo con yeso

Sí, aun puedes amamantar a tu hijo. Muchas mamás han encontrado que el yeso las roza para esto han sugerido ponerle cinta al yeso. Dependiendo del hospital donde le pongan el yeso, algunos te pedirán esperar antes de que le pongas cinta, así que mientras tanto podrás una playera de lactancia. Asegúrate de preguntar a tu cirujano acerca de amamantarlo antes de cada yeso (por el ayuno de fluidos que debe de existir). La leche materna es considerada un fluido claro y tiene restricciones diferentes que la leche de vaca. Asegúrate de ir con alguien el día de yeso que te ayude a distraer a tu hijo cuando esté desesperado por lactar y no entienda porque mamá o lo puede hacer. Te van a permitir amamantarlo una vez que salga del yeso.

Cómo manejar un yeso en el verano

 Sobrecalentamiento y erupciones de calor pueden ser muy serios en un niño con yeso. Considera invertir en un chaleco refrescante  (http://www.noeledfcastframe.com/2012-09-27-16-54-53/accessories) – el cual podrá ajustarse y ser usando durante todo el proceso del yeso. Duran aproximadamente 2 horas y después necesitan volverse a congelar. El chaleco es seguro y fácil e usar. El peso es menor a 1 libra.

Bandas refrescantes

Es muy importante que hables con el cuidador de tu hijo o a la escuela ya que los niños en yeso no pueden estar en temperaturas superiores a 80-85 F por más de 20 minutos. Sobrecalentamiento y erupciones de calor pueden ser muy graves.  Un ventilador de baterías portátil puede ponerse en la carriola y puede ayudar mucho. Si quieres que tu hijo siga disfrutando de las fuentes que salpican agua puedes hacerlo poniendo algún protector como una bolsa de basura con hoyos que lo proteja del agua. Una cama de agua al aire libre puede ser una gran diversión también. Por supuesto no olvides darles muchos líquidos , las actividades dentro de caso pueden ser muy divertidas también.

Quitar un yeso en casa

Una vez que aprendimos como quitar un yeso en casa fue algo muy bueno para nuestras vidas. Desearía haberlo aprendido antes. Aquí algunos tips:

-Ver el video

-Creo que la mejor hora de hacerlo es en la mañana cuando el estomago de tu hijo no esta lleno y esta desinflamado.

-Acuesta a tu hijo de espaldas viendo la TV o algo que lo distraiga con tus manos y tijeras quita todo la cinta y moleskin que tenga.

-ya con el yeso expuesto o la fibra de vidrio desliza tu mano debajo de la barra del pecho para que quede entre la piel y el yeso.

-Suavemente ve cortando el yeso, empieza con la barra que está debajo del ombligo. Se necesitara fuerza. Asegúrate de no presionar mucho sobre el yeso o el estomago. Una vez que cortes ese sigue con el del pecho y luego con los tirantes de los hombros. Para entonces podrás abrir el yeso y quitarlo fácilmente.

-Puede sonar complicado pero realmente no lo es, no tardas más de 5 mins.

Traduccióntextualpor: Paola Ortega Hernández Santarriaga.