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?

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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.

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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.

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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.

 

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.

 

Day-to-Day Life in Plaster

We are currently on our fourth cast and boy have we learned a lot by now. Much of it I wish we had known sooner, but isn’t that often how life goes?

Nora adjusted pretty quickly to her first cast. It really wasn’t holding her back from doing anything. In fact, she was developing some serious baby muscles. When we would remove her knit-rite shirt, that’s worn underneath her cast, and she would flex and pull herself almost into a crunch and you could see a six pack muscle outline. I kid you not. Carrying around that extra 2 to 2 1/2 pounds on such a little body is making our baby buff!

Speaking of the shirts, changing these little suckers is not fun nor is it easy but we feel it’s a must with a busy toddler who’s into everything. There was one changing episode where I didn’t think I was going to be able to get a new shirt on. The cast was so tight and it was so hard to dig and squeeze my fingers in between to try and pull it down and into place. After about 20 minutes and a few breaks I finally got it.

We’ve figured out a sponge bath routine that to this day, eight months later, is still a dreaded task. She simply hates just about every aspect of the sponge bath and hair washing. No matter what distractions we have or how many pieces of bribing candy we have on hand, it doesn’t matter she hates the whole thing and screams and cries. She just wants in a big full bathtub. But even though she hates it and fights it, she has, in a way, come to terms with it. As soon as we are done she, all on her own, happily applauds herself and smiles and typically does her happy dance.

Having the cast trimmed or removed is an absolute nightmare. Unfortunately, after four casts we’ve had to have 3 trimmed for various reasons. Being too high under her arms, too low on the hips so she can’t move about normally. The sound of the machine and the way it shakes her entire little body while it’s doing its job is simply terrifying for her. The techs felt so bad one time they went to the hospital gift shop and brought her back a couple of stuffed animals to keep.

We’ve taken her to a closer branch of Children’s hospital just for trimming and removal and it got to the point where she was crying and pleading as soon as we walked into the hospital – she just remembered. Holding your child while they try and cut and tear away at the casting material while she’s crying… No, not crying – screaming, screaming sheer terrified help me screams is just awful. I’ve broke down crying right along with her.

But once she’s settled down after having her casts removed, every time she points to her belly and pats her ribs and has a look of wonder, joy and confusion in her eyes. These casts have become a real part of her and suddenly they aren’t there anymore. It’s almost awe inspiring to witness. With each removal we’ve spent a few minutes afterwards just taking it all in…And that includes endless hugs.

The cast removal appointment is a roller coaster of emotions. I can’t tell you how amazing and incredible it feels to be able to wrap your arms around your baby…Around her body, touch her skin, feel her body expand and contract with each breathe after two months of wrapping your arms around a hard plaster cast. It’s like Christmas morning to me. I can picture it and I can feel it right now as I write this…I long for it and I miss it so incredibly much. It’s one thing I often find myself jealous of. I see parents pick up their little ones and give them a quick hug like or a big huge snuggle. They don’t think twice about it usually, why would they? But I do.

So after a long hug and squeezing session in the doctor’s office our routine is to go get milkshakes on the way home as a reward. In fact, it’s become our routine for just about any doctor visit now. And once we get home its bath time. The excitement on her face when she’s in the tub and realizing she can actually splash and play is infectious. It’s impossible not to grin ear-to-ear.

These breaks from her casts are filled with more baths than you can imagine, almost daily trips to the pool, ooey gooey messy crafts projects, more hugs and snuggles. I’m beyond grateful for these breaks where we have a few days to live life like normal.

milkshake  crafts  pool