How is EDF/Mehta Casting Different for Early Onset Progressive Infantile Scoliosis & Early Onset Congenital Scoliosis?

Imagine there are two different families, one family is told their 10 month old baby has a 35 degree idiopathic curve, an early onset progressive scoliosis diagnosis and then the other family is told their 10 month old baby also has a 35 degree congenital scoliosis curve from an abnormally shaped vertebrae.  I often see parents early on thinking, “ok sure they are different but they can’t be that different a curve is a curve and the treatments must be similar.”  This sentiment couldn’t be further from the truth really.

Let’s talk about the differences

 

Early Onset Progressive Infantile Scoliosis – Idiopathic

 

Early Onset Congenital Scoliosis
Onset happens anywhere from birth to age 3
Idiopathic means the cause is unknown
Occurs during fetal development causing abnormally shaped vertebrae to develop.

Curve onset or progression occurs between birth and age 10

Often has the potential of being corrected with non-invasive treatment Can only be corrected through surgery.
It’s usually best to treat this as early and as young as possible. Waiting and watching is usually the first form of treatment
Non-invasive treatment like EDF/Mehta Casting has its best opportunity for success in correcting a curve when casting begins as early as possible EDF/Mehta casting is not recommended for all CS cases.  In cases where it is recommended it’s usually not started as young as possible or with lower curve degrees.  Casting in congenital usually doesn’t happen till a curve is showing signs of rapid progression in the wait and watch stage and it’s often not done till a curve is higher in degree closer to the 50 degree mark.  It’s also usually not started in kids over the age of 2 and half to three. If a child has made it to that age and the curve has only just hit a higher degree casting usually doesn’t make sense
EDF/Mehta casting CAN correct a curve of this type. How much it corrects varies from each child and case.  The goal is to try and get under 15 degrees. EDF/Mehta casting can NOT correct this type of curve.
EDF/Mehta Casting will not correct all curves to under 15 degrees.  But casting is still considered successful if it can slow down the progression and allow a child to grow  and for his/her lungs and heart to develop more before surgery is needed EDF/Mehta casting will only correct a curve while in the cast.  Once the cast is off the curve will go back.  Casting is considered successful when it slows down the progression of the curve and allows a child to grow and his/her lungs and heart to develop more before surgery.

 

EDF/Mehta casting is an incredible non-invasive treatment option for early onset scoliosis. It should almost always be considered a first line of defense that is started early for idiopathic cases.  In congenital cases waiting and watching is usually best.  Waiting and watching can be very hard for parents, especially if they are talking to their early onset progressive idiopathic scoliosis counterparts who are treating as soon as possible.  Because congenital scoliosis can only be ‘fixed’ surgically you do not want to intervene even with casting too early because it’s not going to fix it, it’s only going to slow the progression down, so there’s no need to put a child through the casting process early, they are already likely going to be going through surgery or surgeries later.  And yes, casting isn’t going to fix all idiopathic cases either but it it the goal and in cases where it isn’t going to fix it, it’s a vital tool to buy growth time before these kids face surgery too.

It’s also important to remember, there are still many types of congenital scoliosis where casting is not going to be good option for a number of different reasons.  But I will add, casting for congenital cases as a whole is rather new.  It’s really only been done in the last seven years or so.  So there are many pediatric spine surgeons who specialize in congenial scoliosis but do not cast or even recommend it in cases where it might make sense.  This is starting to change but fast enough.  There are studies out showing its effectiveness to slow down the progression of a curve and buy valuable growth time for many CS children.

At the end of the day, families should often get more than one opinion on treatment plans and I believe that should always include a surgeon who provides EDF/Mehta casting when you have any type of Early Onset Scoliosis diagnosis.  If you want to buy a home in Southern Florida are you going to choose a realtor who has lived their entire life in Alaska and has been a commercial realtor there or are you going to choose someone familiar with the southern Florida market and residential real estate? Same thing.

If you have any other questions or thoughts on the differences, please comment below.

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The Truth About Advertising On Blogs

I want anyone following my blog or anyone who comes here for information to know, I do not have any control over the advertisements that show up on my site or at the bottom of my blog posts.  None.  That also means I do not endorse or support the advertisements you see either.

Currently there is an advertisement from a law firm offering free legal consultations for a class action lawsuit against Nuvasive the manufacturer of the MAGEC rods.  This ad is popping up all over social medias well.  Just to be clear, I do not support this advertisement or even agree with the merits of this lawsuit in any way.

Thank you

Mehta/EDF Casting Changes More Than Just A Child’s Spine

My second child Rose is just 14 months old. Technically she’s a toddler but really she’s still a baby. I mean she only just started walking a few weeks ago. She’s an adorable, funny, healthy and happy baby…. A baby!

IMG_4164

Rose at 14 months old

She’s the same age right now as Nora was when Nora got her first Mehta cast. This is mind-boggling to me.  I’ve been fixated on this for a couple weeks now. Lately I look at Rose and I think, my gosh how did we do casting with Nora? Look how little Rose is, she’s not even 20 pounds.  How did we do this years ago? I’ve REALLY realized just how small she is and to imagine her in a cast….I don’t know how we did this before.

And yet, I’m very matter-of-fact about Mehta casting and I’m a huge advocate for casting.  I don’t hesitate to explain to new parents in support groups how important it is to begin casting as soon as they can, as early as nine months old, sometimes even six months old.

…But they are still such tiny babies…

I’m quick and steadfast in my recommendations to parents about Mehta casting typically being the BEST non-invasive treatment plan. Non-invasive….

Honestly, ‘non-invasive’ it’s a bit of an oxymoron when it comes to casting. Yes, yes, yes, it’s the best medical option to begin with almost always for idiopathic infantile scoliosis and often for severe congenital and neuromuscular cases. But take the medical point of view out and it’s hard to say a Mehta cast isn’t invasive. It’s an entire plaster and fiberglass cast covering a child’s torso. Shoulders to hips. You can’t ignore it. It does change some things.

first cast

Nora at 14 months old in her first Mehta cast

But kids are resilient and learn new ways to do just about everything. Avoiding baths, swimming, sand, heat and a few others are hard but not awful. The trips to the OR every two months and dealing with post-op was gut-wrenchingly hard for us. But the hardest part was not being able to hug, hold and comfort my baby the same. You adapt but I think I missed feeling the weight of my baby’s body collapse into mine. There’s nothing more comforting than fully physically embracing someone you love. When I reflect on this I can easily get very emotional about it,  some two and half years after casting.

But we did it because that’s what you do. And we did it not knowing if it would work. We did it knowing we would still need to embark on a complex surgery or surgeries down the road.

At the time it was hard. But we’ve come so far now. We are past casting, which bought us two years of growth time. We are two years past surgery.  While it’s not so long ago at the same time it IS a long time ago. Being over two years past it, it’s become easy for me to think, it really wasn’t so hard.  Because it wasn’t…when you look back.

But seeing Rose the same age as Nora was when we embarked on this journey … it’s been humbling. Humbling.  That very first cast of Nora’s forever changed me. Truly changed me. Changed me in ways I can’t describe, ways I think only parents who have walked in these shoes can understand.

But I’m filled with so much gratitude.

I wonder, will these same waves of emotions, memories and humility still overcome me when I see my future grandchildren turn 14 months old too?  I sure hope so.

 

Finding the Silver Linings of Early Onset Scoliosis

Let’s be real, of course there isn’t a single one of us who has dealt with an early onset scoliosis diagnosis and has said ‘well I’m glad we got this diagnosis’. No, not at all.   It’s physically, emotionally and can even be financially challenging.  It’s scary and hard and that’s just touching the surface. The unknowns, the casting, the OR visits, the anesthesia, the surgeries, the stress around living with a child in a cast, the waiting, knowing that for many this can really be life threatening, . … it IS too much and you can’t understand what it is like unless you’ve been through it.

But we all have a choice in how we respond to it all. I’ve seen people choose to be angry, bitter and refuse to see outside their own child’s case and realize they are pretty lucky in the grand scheme of things. And I’ve seen those who have children with some of the toughest and hardest cases I have ever seen and they choose to do good and find the positive pieces in it all.  That’s not saying everyday is or should be filled with sunshine, rainbows and unicorns. Because it’s not.  It’s not easy and some days the choice is to be angry. But it’s what you choose most of the time that’s important.

For me, I tried to find the positives. Life is a gift. All of it is a gift. The good the bad, the pretty the ugly, it’s all incredible.  Sure it’s easy for me to say this, since we have made it over most of the difficult hurdles (hopefully). But I decided early on that at the end of the day I had to choose to find the hope, the positives, the sunshine more often than the clouds of gray and the anger.

There are some real bright sides that I choose to focus on and how my life has changed positively.

1. I’m much more compassionate. I think I was a compassionate person before but now it’s on a whole new level. I’m much more in tune with and feel for kids and parents suffering with medical challenges.  I’m an advocate, an activist, someone who wants to be involved and find ways to make positive changes, big and small.

2. I got 5 or so Christmases every year. Almost two years of cast life was not fun, but it wasn’t all bad. I’ve always said cast removal day was like Christmas morning. The anticipation, the pure joy of all the fun ahead once the cast is off. Seeing her happy face as she enbraced her own body.  And the hugs, the hugs!  I can’t tell you how amazing it feels to hug your child for the first time in two months without a body cast in the way.  All of it is just magical.

3. New memories I wouldn’t have had otherwise – Cast breaks afforded us the opportunity to relish in baths, swimming, sand boxes, messy crafts, mud… you name it. When you haven’t been able to do something that’s such a basic a part of life, you cherish it when you finally are able to.  I guarantee I have far more incredible memories of my daughter in the tub than my friends who bathed their kids daily.

4.  New friends – I’ve been fortunate to make many new modern day pen pals. Friends I have made in support groups through Facebook. It might seem cheesy and pathetic in some ways, but we have bonded in ways my other friends simply can’t. I have an incredible support team behind me online. I’ve been fortunate enough to meet some of them in person too.

5. Sense of purpose – When we started this journey and diagnosis these support groups on facebook were really just starting out and the information I found the web was limited and misleading.  I’ve watched the members of our support groups double and some even triple in the time I’ve been there. I’ve heard hundreds, if not a thousand stories from parents just getting a diagnosis or updates from those who have been at this a long time.  It’s rewarding to know the knowledge I have gained and the work I do has calmed the fears of many, helped guide parents to the right doctors, and helped them find the research they needed to make important decisions.

And when I look at what this crummy diagnosis has given my daughter sometimes the silver lining are just right there, clear as day to see when I see how she responds to the world.

Empathy – How incredible is it that I can say my five year old has a great deal of empathy? Empathy is a life skill that frankly I think as a whole lot of us adults have not learned.  I don’t think she would have learned this skill without going through everything she has.

Comfortable Being Uncomfortable – Spend almost two years in a body cast and I think it’s fair to say you’ve learned how to be comfortable being uncomfortable. Life throws lots of uncomfortable circumstances at us….the economy seating on a crowded airplane that’s been sitting on the tarmac for an hour with no air conditioning on a 95 degree day, the painstaking small talk that’s going nowhere at a party,  awkward conversations on politics or race. You get the picture. But many will tell you one of the keys to success in life is finding a way to be comfortable while being uncomfortable.

Understanding Life Isn’t Fair – She couldn’t swim or spend long periods of time out in the heat in the summer when she was in a cast.  My daughter can’t go on a trampoline now. Do you know how many kids have trampolines in their backyards? They are everywhere and boy I’d love to let her go, they are fun and nothing wears a kid out more than jumping on a trampoline.  But she can’t. And yes it’s hard at times, but this is life, there will always be things we can’t do in life for a whole number of reasons.  It’s another hard one but these are teaching opportunities.  This is up to us as parents in how we approach these things with our kids, teaching our kids that they are not alone and we all face things we can not do or be a part of is just another life lesson that’s bound to help them grow into thoughtful and caring humans.

Patience – Oh patience,  it’s fair to say patience is still not my strong suit. Just ask my husband… but it’s getting better…I think.   Still, my five year old has patience down better than I do at times. Could it just be how she’s wired? Maybe.  But I also know she’s had no choice but to be patient in situations she didn’t want to. Like doctors appointments, scary X-rays, weird diagnostic tests, sponge baths and hair washing in a sink. Let me tell you, sink hair washing is scary for just about all infants and toddlers. But she had to find a way to do it all with some patience.

Duck Tape Collection – You do two years of serial casting you are bound to end up with a pretty sweet duck tape collection.  And have you seen all the Pinterest crafts you can do with duck tape? Tell me that isn’t a positive.

bright side

 

 

Think you know scoliosis? Think again. This is what complex forms of scoliosis can be like.

Today is Rare Disease Day. Chances are you didn’t even know this day existed. The main purpose of this day is to raise awareness in the general public and decision-makers about rare diseases and their impact on patient’s lives.

So today I’m writing to bring attention to the rare forms of Early Onset Scoliosis and Thoracic Insufficiency Syndrome (TIS).  These complex forms can be hard to understand how difficult they can be and what kind of impact they can have on a child and a family, so imagine with me if you will…

– imagine your child having to wear a tight, hard plastic back brace covering his whole torso for 20 hours a day….every day…for eight to ten YEARS

– imagine your child living with real back pain every single day for what may be her entire life.

– imagine your child enduring years and years of painful spine surgeries aimed at just trying to keep a relentless spine from crushing her lungs and heart as she grows.

– imagine the large protruding and very visible rods and hardware in your child’s back actually breaking. Imagine a massive internal infection growing inside his body making him very sick. Imagine both of those issues requiring more surgeries, more scar tissue and making his skin worn so thin in areas he becomes even more susceptible to infections and skin problems.

– imagine your child having to wear a non-removable cast covering her torso.  These casts are applied in the OR under anesthesia. They are changed out every 2-4 months.  Imagine having to do this for years and years.

– imagine your child enduring these surgeries, aimed at protecting her lungs,  but they don’t work enough at keeping her relentless spine at bay and it continues to bend and twist. And now your child has to be on oxygen for the rest of her life because her spine and chest wall has limited the development of her lungs.

– imagine your child’s spine continues to impact his lungs and nerves in his body and he ends up wheelchair bound, for the rest of his life.

– imagine your five year old not being able to get the life saving spine and chest wall surgery she needs in time and she dies because her spine ultimately crushed her lungs.

-Imagine your child’s scoliosis is a result of another complex and rare underlining condition that you don’t have a lot of treatment options or answers to because you have so many other medical issues to deal with 

-imagine your child enduring spine surgeries, back braces, halo traction, living on oxygen, and being wheelchair bound for years but still dying an early age

-imagine the emotional and social toll all this can have on a child. Imagine how mean kids can be.

These are all things I see happen. All of them. I’ve seen numerous examples of all of these “imagine statements” in just the last few months. Last few months, not years. Many of these daily.  Of course death is rare, thanks to modern medicine but it still happens. And despite the medical advancements early death still happens for some.

My life changed when I got my daughter’s diagnosis and the years since my need to learn and know more about a disease with many unknowns has lead me to so many families, new friends, and kids who are fighting battles significantly harder than what my own child has gone through. Their stories, their hardships, their successes, their happiness and their tears have changed my life just as Nora’s diagnosis has.  In fact, their stories are what has probably driven me more. Because their stories could have been my daughter’s story too.

You see, before Nora’s diagnosis, I had no idea how scary and life changing something that sounded so simple could be.

Scoliosis.

I don’t like that word, at all, because too many people believe it to be a minor condition and are quick to dismiss it. What I’m talking about are these rare forms that are anything but minor.

You don’t see commercials with big stars raising awareness and money for this disease or the hospitals that specialize in treating it.  There aren’t telethons or national 5k walks. Most people have no idea the green ribbon is for scoliosis awareness. But if you saw what I have seen, heard the stories I have heard, seen the tears stream down the faces of parents and kids, heard the cries of frustration, anger and the fear of the unknown you would be moved as much as I am.

Of course I would love to see anyone reading this or anyone who has followed my blog to donate to an organization dedicated to fighting this disease or helping families afflicted with it.  I would be thrilled with that. But I know how and where people donate is very personal and let’s face it there are zillions of worthy causes.

So Here Is What My Ultimate Hope Is:

1.  I hope on this year’s rare disease day you find a rare disease that speaks to you and make a donation to an organization dedicated to that disease. Visit the National Organization for Rare Disorders to learn more or make a donation here: http://bit.ly/2lQdQW4

Even though the U.S. spends $29 billion each year on medical research, thousands of diseases simply fall through the cracks. They don’t have celebrity endorsers, are burdened with tongue-twisting names or fall outside of popular research fads. As a result, far fewer federal dollars flow to researchers in these areas. BUT…

Rare disease affects between 25-30 million people in the United States.

One in 10 Americans is living with a rare disease.
Children represent the vast majority of those afflicted with rare disease

Only 5% of rare diseases have treatments 

Research on rare diseases can often lead to advances in our understanding
of common diseases such as cancer, heart disease, diabetes,
stroke and other major health problems

As a whole, rare diseases represent a large medical challenge.
Combine this with the lack of financial incentives to treat or cure rare diseases,
and a serious public health issue is created

2. I hope my blog, my words, builds awareness and continues to help others out there all around the world. You can help not just financially. Help spread the word, share the posts, and build awareness about early onset scoliosis (a.k.a. infantile scoliosis) and congenital scoliosis.

If you’d like to make a donation to an organization aimed to helping children with complex spine issues here are a few wonderful organizations.

Children’s Spine Foundation http://childrensspinefoundation.org/help.htm

Shriners Hospitals http://www.shrinershospitalsforchildren.org/donate

ISOP (Infantile Scoliosis Outreach Program) http://www.abilityconnectioncolorado.org/infantilescoliosis/

You can make a difference.  Be part of the change!

I dedicate this blog post in loving memory to:
Olivia  Montoya, Kendra Munoz, Dani Smith,
Caleb Carithers, Avalynn Walde & Kylie Lether

Preparing and Packing for Your Young Child’s Spinal Surgery –What We Did and What We Would Do Differently Now

It’s been a year since Nora’s spine surgery.  Time has flown by and she really is doing wonderfully.  Sometimes it’s easy to forget just all she went through for over half her life, she’s an active, funny and kind little four year old now.  Now the only daily reminder comes when she asks you to scratch her back, her hardware is still visible and easy to touch under her soft precious skin.   Other than that you really would have no idea.

Lately there have been a lot of families asking for tips and experiences around planning for their child’s spinal surgery.  There were a lot of great tips I learned and some things I’ve learned since then too that I think are very helpful. I’ve broken it down into categories below.

Preparation before Surgery and Meeting with your Child’s Surgical Team 

There’s no question, I truly respect, admire, trust and am utterly grateful to my daughter’s surgeon as well as his team.  We had several meetings and appointments before surgery and covered a lot, but there are a few things I wish I had asked or inquired about more.

Blood Transfusions
We knew going into this there was a good chance she would need a blood transfusion. Transfusions are not uncommon in spinal surgeries that require excisions (removal of vertebrae) of some type.  We knew this for a long time and had to fill out all sorts of paperwork beforehand.What I didn’t know was a transfusion might be needed post-op.  That’s also what happened with Nora.  She lost over a 1/3 of her blood during surgery.  Hearing that, I will admit, kinda freaked me out when I heard it.  She was struggling post-op to bounce back.  Her labs just were not showing improvement like they had hoped.  Three days post-op they ordered a transfusion.

Looking back, I wish I had asked more about this beforehand.  How do they determine the need for a transfusion in the OR, what’s borderline? If labs are questionable post-op how long and often are they monitored, what is the criteria to determine if a transfusion is needed?  I felt like we were in limbo each day she wasn’t improving and didn’t really know what all we were looking for to determine if she needed one or not.  I also didn’t know a transfusion takes hours.  In my mind it was something like it is on TV hospital dramas where they seem to pump it in right away.  Because of the risks involved in a transfusion, they do it very slowly, but still have to do it in a set time.  Kids are very closely monitored during that time too.  Fever spikes can happen and can impact the transfusion all together.

Post-Op Constipation
This is a subject no one really wants to talk about much and if you know me well, in general, I’m not one for “bathroom conversation” at all.. This was only briefly talked about at our pre-op meetings.  It was a subject folks in our online support groups didn’t touch on much either.  And yet, this was a HUGE issue and concern for us, and since then I’ve learned it is for many kids.We all know surgery puts the whole body, including the digestive system to sleep. The longer the surgery, the longer it takes to “wake up” the system.  Plus you have very strong narcotic pain meds in the system and they just so happen to have the nasty side effect of constipation.

Nora’s surgery was tough, she struggled post-op with some pain, low oxygen stats, low hematocrit, hemoglobin, etc – which lead to the need for the blood transfusion. All of these things combined and the fact that she was just barely three years old contributed to her refusing to eat much of anything for a few days.  Day one we got her to eat Popsicles and lots of juice and water but  that tapered off into the night and she just didn’t want anything… for days…not even her favorite foods.  It’s impossible to rationalize with a three year old and unfortunately her refusal to eat didn’t help the building constipation issue.  Mirilax and Colace are added to food and drinks to help with constipation, if we couldn’t get her to eat we really couldn’t get them in her system.  Plus fiber and fluids are key to helping but nothing was going in.

She was eventually so uncomfortable and in a good deal of pain from the constipation. A suppository didn’t help much and we had to resort to an enema, which also didn’t completely help.  Administering those to a tiny child in pain was downright awful to witness.  Then watching her deal with the pain, discomfort and confusion that goes hand-in-hand with the effects of those meds was one of the hardest things for me to watch during her recovery.  I was so not prepared for that.  Once we got through one long afternoon of dealing with those, I locked myself in the bathroom and cried into a towel so no one would hear me. It was that awful to see my little girl in so much pain.  We ended up having to do a few suppositories and enemas during our stay and even when we got home.

I have since learned, some surgeon’s prescribe stool softeners and other constipation meds for children to take BEFORE their surgery.  This is something I would recommend everyone ask about.  I’ve heard from several parents who believe this helped their child.

If your child can chew gum, be sure to bring sugarless gum to the hospital with you.  A study was done that showed spinal surgery patients who chewed sugarless gum several times a day post-op had bowel movements on average 30 hours before those who did not.  Nora didn’t know how to chew gum at the time, but looking back I might have taught her how to a few months before surgery.

Expectations
We were told we would most likely be in the hospital X number of days.  So in my mind, barring any major major complications – which I refused to think about-  we would be there X number of days.  I never considered complications that would be considered minor in the grand scheme of things.  Complications that would mean we would be there longer.  So I didn’t pack accordingly.  I didn’t pack enough cloths.  I tried to pack lightly as it was and was already low on things.  My advice is to plan on having two extra days worth of clothes with you.  It worked out for us, unfortunately Nora had vomited one of those last days all over me and herself, that was when I learned our hospital floor had a washer and dryer for families to use.

The Ice Machine Ice Pack Pad
Our hospital provided us with this awesome little cooler with a pad attachment that plugs in called an Ice Machine, simple enough . You can only get these things by prescription. They way they work is you fill the small little cooler with ice and water, plug the cord in and it has a long attachment to  a pad that’s about 12”x12”.  The pad was put under Nora’s back before she even left the OR.  It runs the cool ice to the pad and lasts for hours and hours.  You never have to move the child to put a new ice pack behind them and it’s super thin. It was a great help and it came home with us.  We used it for about a week post-op. I’ve learned not a lot of hospitals use these with our kiddos.  There’s no doubt it was a huge help for us, I highly recommend asking for one.


What to Pack for Your Hospital Stay:

Now is not the time to hone in on your light packing skills.  By all means don’t go crazy, but don’t aim for the bare minimum. It’s better to be overly prepared.

Snacks and drinks – Matt and I never left the hospital, in fact it was days before I really left the room. Matt only occasionally left the room and went to the cafeteria area, he really only went when he was on a mission to track something else down.  We had the ability to order (and pay for) food from the room service menu and that’s mainly what we did but it is still a limiting menu.  The coffee, drinks and snacks were minimal.  We had access to a kitchen on our floor that had a fridge, microwave, even a stove to use. Bring snacks and your favorite beverages.

If your child is a picky eater, check out the room service menu BEFORE your child’s surgery.  I was able to just call and someone emailed it to me.  I was glad I did, it helped me figure out some other foods, favorite food to bring with for her.  Granted she wasn’t into eating any of it, I’m still glad I brought it just in case.  They will want your child to try and drink a lot of fluids so if your child has a favorite beverage that the hospital doesn’t have, like Gatorade for example, bring it.

Lollipops and candy – I brought these for Nora to have and also used them as bribes and incentives.Lollipops also work very well as “chasers” following oral meds that have a terrible taste

Bedding – Blankets and pillows for yourself and well as your child. I mainly focused on bringing these things for Nora and figured Matt and I would just make do.  Hospital blankets tend to be stiffer and not as cozy as a favorite from home.  So I wish we would have brought a couple of nicer blankets.  Thankfully we had family who brought us some.   Our child’s hospital room was very nice actually and had a couch that pulled out into a small bed like thing.  We were advised it wasn’t the softest and most comfortable sleeping pad under and if we had camping sleep pads, we should bring them, so we did and that really helped.

Clothes for yourself, like I mentioned above, pack a couple days worth of extra clothes. As you would imagine bring comfy clothes.  Lounge clothes and sleepwear you are comfortable in and comfortable having strangers see you in.   Zip-up hoodies are great.  Many hospitals are cold. Our room was actually warm at times, but our stay was also during a week of close to 100 degree temperatures outside.  Slippers and/or comfortable slip-on shoes like Crocs are key.  You will want to bring a set or two of pj’s or comfy clothes for your child too, they might want to wear something other than the hospital gown. Nora wore the gown till the day she went home and was happy wearing a nightgown for the ride home.

Movies, Tablets/DVD Player– Our room had a TV, DVD player with a Playstation 3 so we brought DVDs. I didn’t bring a ton, but looking back I wish I brought more.  Toddlers are picky and suddenly she didn’t really want to watch any of her favorites.  After watching Charlottes’s Web three times in a row (granted she slept through much of it) she then only wanted to watch Mickey Mouse Club on the Tablet. We had to have it play season after season on repeat for something like 12 hours or more straight, through the night even it was just background sound for her. This is when I realized we needed an extension cord.  The battery would die and the only outlet to plug it in was not in an ideal place.  This is an odd one, but I’d pack an extension cord for sure.

ToysBring a few favorites, like stuffed animals, things that make your child feel safe and happy.  Then go to the dollar store or even toy store and buy a couple of news toys.  The cheap easy dollar store toys work well as quick and easy distractions if needed.  Your child might not be into them long, but that’s ok.  A lot of their recovery will involve doing things they don’t want to do, incentives and distractions really help.  A friend gave us this silly goofy little hamster thing, that rolls around on the floor says silly things and does silly things.  It was AWESOME because it was the one thing that got her to agree to stand up and take a couple of steps, which was all she could do, but it was that toy, nothing else.

Bubbles, pinwheels, kazoos, and party favors – these are key for helping a do their respiratory exercises that they have to do to get their lungs functionally fully again after being intubated for a long surgery.

Toiletries – The obvious, shampoo, conditioner, soap, lotion, chapstick, toothbrush toothpaste, hairbrush, hair ties, a little make-up if that’s how you feel most comfortable.  For your child, shampoo, conditioner, soap and DETANGLER SPRAY and LEAVE-IN CONDTIONER for girls especially.    Nora didn’t shower till her last day there but her hair was a tangled mess.  If you can, put two braids in your child’s hair down each side of her head the day of surgery, and leave them in as long as you can.  This will really help with knots and tangles.

Ear Plugs – There’s much commotion that happens in and out of the room all day long and all night long. Nora’s oxygen stats were not stable for days and the monitor would beep and beep till a nurse came in if you have both parents in the room, ear plugs might help one parent get some sleep for a bit.  We tried sleeping in shifts.

A lot of families like to use essential oils.  Feel free to bring your diffuser and favorite calming oils.

Notepad – Our hospital provided us with a nice little bound notepad and pen if yours doesn’t, bring one to take notes in.  You will want to take notes on everything from what they eat and drink, when and how much, to care instructions and it’s a good place to write down any questions you might have.  It’s easy to forget your questions when you are sleep deprived.

Preparing Your Young Child For Surgery

  • Read books or watch movies or TV shows with your child about going to the hospital. We found the book Franklin Goes to the Hospital and Critter Goes to The Hospital to be really good books.  The cartoon Doc McStuffins was helpful too.
  • Lots of  medical play by taking turns playing doctor and patient. Include medical equipment if you can.  Through all of our castings we aquired a pretty sweet doctors/hospital kit.  We have been role playing for a long time and We’ve really found it to be helpful.
  • Don’t tell your child about the surgery weeks in advance.  It’s just too much time to make them worry.  I would suggest consulting with your hospitals Child Life department on when to tell your child and how to tell them.  Always be honest, but keep it brief and simple.
  • Allow your child to talk about their thoughts and feelings.
  • Let your child  help pack or mention a few things they would like to bring.

What It Was Like To Watch A Child Have A Mehta/EDF Cast Applied In The Operating Room

A few weeks ago I got to witness a sweet little two year old girl receive her fourth Mehta/EDF cast. I had the privilege of meeting this baby and her parents last summer when they were just starting the casting process and, like many parents, they were very overwhelmed and scared. We just so happen to have the same amazing surgeon, Dr. Sumeet Garg at Children’s Hospital of Colorado.

If you know me from all the early onset scoliosis support groups, you know I’ve tried to educate myself as much as I can on all things EOS, whether it’s idiopathic, congenital, even some on neuromuscular and syndromic. When it comes to casting, I think I have a great deal of knowledge on not only what it’s like to live day-to-day with a child living in a cast (my child did have nine casts in just about two years), but I also have a good deal of knowledge around the ‘science’ of it and the research behind it. But that’s been all “textbook”.

Over the years there have always been questions that have come up in the support groups where I haven’t fully known what a good answer is. I’ve thought for a long time, if I could just witness an actual casting and ask questions while watching, maybe I would understand better and be able to answer some of these questions better for parents.

Once Nora was finished with casting and we had her surgery behind us, I asked our surgeon if I could come watch one. He said, “I would have let you watch one of Nora’s castings.” That made me chuckle to myself a little bit. I know myself well enough; there was no way I wanted to see that process happen to my own child. I had to wait till we were past it. Taking Nora into the OR for every casting and battling to put her to sleep was just too much. I could never stay and watch the process and actually learn from it. I’d be too worried about her and I’d be an emotional mess. There’s a reason surgeon’s aren’t allowed to operate on their own family members…to me this was kinda like that.

Casting Day:
I had a bunch of paperwork and documentation to provide in order to be given the privilege of observing that day. When I arrived I met Dr. Garg and he took me back to get actual scrubs on and we worked our way to pre-op. He stopped often to chat with other doctors here and there. They were chatting about surgeries from the week before and a special casting as well. He took the time to fill me in a little bit on what each conversation he had was about. It was exciting to hear about new technologies they had implemented in a spine surgery and to hear about a different casting, where they did a waterproof cast.

Pre-Op Meeting:
The whole time we were walking around I was feeling great – excited and calm.  A new and strange feeling for me at the hospital. Once we made it to our casting patient’s room and I saw the parents of this little girl my stomach flipped and sank a little. I knew that look on their faces so very well. They didn’t want to be there, they were stressed, tired and more than anything nervous and a little worried. I knew those feelings so well.  And yet today, here I was cool as a cucumber; it felt wrong to feel that way. But isn’t that exactly how things are in a hospital setting? Such a stark contrast of feelings and emotions. It’s so hard on families yet can be exciting and rewarding for those who are caring for our children.

After we talked with her parents about the latest x-rays (which she hadn’t had since she started casting; they showed she had some great improvement –so that was exciting to see) the room filled with all the other doctors and nurses who are vital to the whole process. Dr. Garg and I left and made our way back to the OR, this time chatting about everything from our own kids to the holidays and upcoming work trips he had. I love that he shared with me details about his career and what he’s learning and what he’s teaching.

casting table

a casting table

Inside the OR:
In the OR, this time from the opposite side door I was used to walking into, I saw the little girl peacefully asleep on the bed. I was hit with a wave of emotions again. I knew this room way to well -all the equipment, the cold temperature in the room, the stark white walls and floor.  It was strange being here from the other side without my baby in my arms. I was introduced to everyone in the room and there was brief small talk while they seemed to get everything in place. For the first few minutes, I kept thinking this is what it was like when Nora was in here, this is what went on in here for each one of her castings. That sweet baby on the bed could be Nora. It was just an odd feeling.  But I quickly relaxed, because this wasn’t my child and because l looked at her face and saw she was ok, she was peacefully sleeping.

I wasn’t in the room for the intubation, so once we came in she had her IVs, all her monitors in place and the anesthesiologist was monitoring her. It was time to put the knit-rite shirt and stockinette on her body. and getting this special support piece around her neck and face. This is used to support her head and hold her head in the right position once on the casting table.
Now was the hard part. I even asked Dr. Garg at the end what was the hardest part about casting, he said the transfers from the bed to the table and back again. I can totally see why. It’s a lot to move a limp child who is intubated and has a bunch of wires and monitors attached to them over to this strange looking casting table, where their bottom rests or balances on this tiny 2-3 inch bar.

A lot of people are involved in the transfer, holding, and supporting her body and limbs. Once she was over, they quickly get all the wires out of the way or where they need them. Then a nurse is taking this long line of string like gauze and pulling it up over her hips. That string is then pulled and anchored to the back of the table, creating traction and pulling her torso straight. At the same time her head and the support under her chin is being secured to the opposite end of the table. Next her arms are pulled out straight and secured as well. All of that happened fast, but it was very calculated and done with extreme caution to make sure the child is in place properly and secured properly. I could see very easily how difficult that process can be.

The Actual Casting Begins:
Next she was quickly wrapped with the padding that goes under the cast with extra attention placed on her rib hump. Dr. Garg, assessed her and made a couple of tweaks here and there to how her hips were anchored and the position of her body on the table. He was looking at the mirror under the table that allows him her see her back and make adjustments.

child on casting table

this is not the child I saw casted, but this gives you an idea of what they look like on the casting frame

In no time they were ready to start applying the actual plaster. A nurse was unwrapping the casting material and dipping it in the water to get the plaster going and then handing it to Dr. Garg. He just wraps it around her whole body, round and round.  The plaster went on super fast. I had no idea how fast that was. The plaster begins to hardens fast, but not so fast you can’t mold it, unlike the fiberglass, which I will talk about in a minute. Dr. Garg would wrap it round and round and then gently push on points of her spine or chest or even hips. Then he would wrap some more, smooth it out and mold again, applying pressure here and there while he went round and round and the cast began to dry.

The pressure he applied, he explained was always with the palm of his hand. If you use fingers when applying pressure you can create pressure points which would not be good.  The derotating aspect of the cast application was, what appeared to me, as the hardest part of the cast application. To me it looked not only like a learned skill, but something learned over time that becomes instinctual almost while also being a bit of an art. That’s my best way of describing it.  He would gently push from the front and back to shape the cast and would repeat that over and over….smoothing, molding, applying pressure and shaping. He explained, knowing where her curve was from x-rays and her rib hump determined where exactly he would apply the pressure.

I asked how much correction he thought he got.  He said he didn’t know for sure but he knew he did get correction. He said surgeons can’t really tell how much without an x-ray.  This is something I’ve been wrong on for awhile.  I was under the impression surgeons could tell approximately how much correction they were getting while applying the cast and that’s something I’ve said to parents.  I’m glad I know better now.  It makes more sense to me now why some doctors do in-cast x-rays after every single casting.  I personally don’t know if that changes anything or if I’d like that many x-rays but I have a better understanding now why many do.

During this entire time the anesthesiologist was monitoring all her vitals. The cast application process and the pressure involved in the derotation, does put stress on the respiratory system. It is a snug plaster cast being applied to the entire torso.  There is no tummy opening yet.  This is why intubation is so very important. That intubation protects the airways.

The biggest surprise to me so far was that the process is much gentler than I imagined. I imagined it was a lot of pulling the body in traction to get it in place and then lots of pushing and pressure to actually derotate the spine. It wasn’t like that. Yes, there was some pulling and pushing but it was gentle. I was amazed and relieved!

That being said, I’m still shocked to hear there are some surgeons applying casts on kids while they are awake. There is simply no way, in my mind, that can be done on a child who is awake. One, it would be extremely traumatic for the child, heck it would be tough for even an adult to do that I think, being tied and pulled into place and can’t really move. Two, I have to imagine a young child would be crying hysterically, with their lungs taking in so much air in and out I don’t know how you would get the cast to be fitted properly around the torso. And lastly, how can you assure an awake child is receiving the right traction? How can you get them in place on a proper casting table when they are awake? I simply cannot imagine how it could be done properly and effectively.

Which brings up the next surprise, I still don’t understand how a surgeon makes sure the cast is sung, not tight and not loose. It has to be with how the plaster is smoothed on and how and where pressure is applied. It’s all in the feel I think.  To me, that seems like another part that clearly takes practice.

Next up, they applied the fiberglass top layer. This went fast too and this is where I could very easily see the difference in what you can do with plaster and what you can do with fiberglass. Dr. Garg showed me how you can mold and get better hold with plaster. It was very obvious watching to see how well the plaster works for shaping and molding. The fiberglass, it just doesn’t move the same or have the same strength as plaster.  It’s more rigid and it hardens faster. I could see how fiberglass just isn’t going to hold the derotation in place like plaster would.

This was a big take away for me. I know there are a handful of surgeons who are only casting using fiberglass. They clearly have had some success but I also think I understand why there are still many who aren’t seeing success; – Could it be related? Obviously, I can’t say for sure but I know if my child had idiopathic scoliosis, with a significant curve, that had the potential to being “cured” I would not want a fiberglass only cast.

After the Cast is Applied:
At this point this little girl was ready to be moved back to the bed. Again the transfer can be tricky.  Once they got her over to the bed the clean up began. Plaster is messy, and with as fast as you have to move there is sure to be some drips here and there. Then it was time to trim the cast. The edges, the tummy cut out, the small hole in the back,  and under the arms. Dr. Garg, drew with a sharpie where he wanted to cut first, and then went to it with the casting saw.

After living through many casts, I know firsthand the hardest area to deal with is generally under the arms. No matter how you go about it, the cast will rub and press into the arm. The key is not having it too high where it really pinches the skin and can cause sores. Dr. Garg explained how it’s just a tricky area, you can’t cut it too low otherwise you lose some of the casts integrity where it holds the upper chest area. This was something I didn’t know.  But If you don’t trim enough it’s going to rub and cause sores. In the casting support group, this is the area we see parents ask about the most. When we see ones that need trimming, I think it’s because most surgeons probably error on the side of caution and keep it a little high and see if the child tolerates it ok. It is hard to tell exactly how a child is going to move about in a cast when they are on a hospital bed under anesthesia.

After all the cuts were made it was time to pull the padding down around the edges, add the mole skin and apply the duck tape. It was that simple and fast. I know many facilities have an entirely different process for how things are done once the cast is on. Many wait till the child is awake, then they are put under a dryer and then taken to a room for trimming and taping – all while awake. I cannot tell you how grateful I am our surgeon gets it all done in the OR. I told everyone in the room the process other facilities have, the collective response from all was surprise and thankfulness for the processes that are in place at Children’s in Denver.

I think those differences have to do with a couple of things, one, the type of plaster the surgeon is using and two, how thick of a cast the surgeon is applying. That’s my only guess as to why some kids need to be put under a dryer and the process takes longer.

Final Thoughts:
All in all I’m very happy I witnessed this. I have a much better understanding now of how it all works and why certain things are done. I’m happy I was able to see just how gentle the process is overall, much different from what I imagined in my head. If there is any one thing I can impart on parents it’s that a properly trained surgeon with experience casting is going to apply the cast in a gentle manner. We often hear parents asking about giving their child Tylenol or ibuprofen after casting because the child might be sore from being pulled and twisted, from what I saw, that’s not the case at all. I think both over the counter medications can have their place post casting, but it’s not for pain from the actual casting itself. I hope parents can take a sigh of relief over that one.

Watching a casting instilled my belief, even more so, that casting was the best option for my child during the time we utilized it. There is nothing barbaric about casting and it can be absolutely life saving for many kids. My wish would be for more pediatric orthopedic surgeons and pediatricians, for that matter, to be able to see what I did and see how casting works. I know that would save more children from years and years of complex surgeries.