Re: Looking for help/input from more experienced families

December 6, 2008

- Ist I have to say that it is wonderful that Guthrie is getting around and sleeping well. I think that is more that 1/2 the battle. Once your child starts to adjust I found that other things start to fall into place. I can only share my experience with casting, I am not at all familiar with the surgical procedures. My son, Jack who is now 17 months old, was just casted at SLC 2 months ago. We are still trying to find things that work for us. I know that every cast is different in order to best correct the child's curve, but in our case, the otter layer of Jack's is fiberglass and in some area I used the moleskin pedals like the back cut, which is not very likely to get wet. The pedals seem to stick well to the fiberglass; but the front of the cast I used neoprene to help make it more water

repellent. One of the father's associated with this group, Darrell, has a picture of his son, Dylan in his cast (you can go to the picture section) and check it out. SLC gave us some neoprene, but Darrell supplied me with some as well. I have to say that it is very useful in keeping the cast as dry as possible, and therefore keeping the integrity of the cast as strong as possible. You mentioned that Guthrie is active and you are concerned about the cast "breaking", I don't know how that could happen...unless the integrity is compromised, like getting wet. So this may be a helpful option for you. The second reason why I like the neoprene is that it make a cast as "soft" as possible. My clothes and others in the family were covered in snags from holding Jack and I found this this is just a nice soft paddled feel. I will try to post some pictures of Jack and I will let you decide. If you are

interested in the neoprene I can get you in touch via email with Darrell.

As for the diapering issue. I use the Pampers Cruisers (I know they are a bit $, but I have found that they are the most absorbent and work well).. I use one size up, from what he would normally be in, and then I tuck the diaper into the cast in the front and in the back. This tucking into the cast is a must. I know that others use Poise pads or diaper doublers, but as I mentioned some things that others do may work and others may not, so trial and error is fine until you and your family find the best fit. We also change Jack a lot! We have had no issues with leaky diapers...I say that and tonight we will probably have a blowout!! Good luck to you and I hope you get lots of ideas. I have found that really helpful to pick and choose ideas from other families and you just do the best that you can. Take good care and good luck to you and your son during this journey. ~Krista--- On

Sat, 12/6/08, Ansorge wrote:

Subject: Looking for help/input from more experienced familiesTo: "C.A.S.T." <infantile_scoliosis >Date: Saturday, December 6, 2008, 3:05 PM

Hi -We are just back from our son, Guthrie¢s, first casting in Rochester, and we are looking for any help or input from more experienced families. Guthrie is 25 months old. He had a 58 degree Cobb angle before his cast, and in the cast he is measuring a 30 degree Cobb angle. He was diagnosed a month ago.It's been an emotional roller coaster ride these last few days. Guthrie is sleeping well, seems comfortable in his stroller, car seat and high chair -- and generally he's learning to get around quite well. But those moments when he's scared or can't do what he wants to do are hard. He's currently terrified of stairs, but when we toss his pacifier a few steps ahead of him (going up or going down) on the steps, he immediately scampers for it and forgets the obstacle in front of him. It's heartwarming and hysterical! We are learning about trimming and reapplying the copious amounts of moleskin that constantly

peel off his cast. The moleskin edges roll up and stick to Guthrie's clothes, and then roll up even more. We are learning about diapering, too, and not at all confident about it yet. Two days out from the casting procedure, and Guthrie still hasn't taken a poop, so our teeth are clenched waiting! We're trying to use panty liners to protect the back of the cast, but everything just seems like a disaster with the diaper -- bunching, sliding, drooping, etc. I am going to search these posts immediately for as much diapering advice as possible!We are concerned about food dropping down into the front of the cast, and we're concerned about Guthrie breaking the cast (our doctor said he has one patient who breaks his cast every time, and Guthrie is incredibly physical, so yikes!).Since Guthrie was diagnosed so recently, and we are (thankfully) in his first cast already, we are trying to learn as quickly as possible, and it's so much to absorb! We

ask tons of questions to our doctors, but somehow we still feel we don't totally understand what's in front of us. Some days this feels normal and manageable, and some days it feels the opposite. Guthrie clearly is the same little wonderful guy in his cast, so we know it's all ok.Our big question is still about understanding what the different treatment paths might be. I think this captures what our doctor has told us about Guthrie's probable path: if casting is working, our doctor would consider casting Guthrie until he was 5 or so; then, if Guthrie¢s spine is not straight after casting, Guthrie would have spinal rod extension surgeries for 2, 3, 4 years (until scarring made it impossible to do another surgery); and then when Guthrie was as old as possible, hopefully not earlier than age 10, Guthrie would have definitive spinal fusion surgery, which would be the end of his treatment. Everything with casting and the extension rods is to delay

the definitive spinal fusion for as long as possible, and in Guthrie's case we'd be lucky to make it to 10 years old. Of course, we hold some hope that the casting alone will straighten Guthrie's spine, but we are also trying to be very sober and realistic. Still, some of the math of the treatment course described by our doctor remains unclear to us -- for example, if the casting doesn't seem to be working (and how/when will we know that?), could Guthrie begin getting extension rods this year, and then therefore have spinal fusion when he was only 5 or 6? And what about bracing to delay spinal fusion as long as possible? Our doctor described bracing as the same as doing nothing right now, so would that be true in a few years when Guthrie¢s older? Sigh.If anyone has wisdom they'd like to share in regards to any the subjects I've touched on here, we would welcome it happily -- either posted to the group, or sent in confidence if you

prefer.Thank you, and good luck to everyone --amanda@catmanandmar y.com

December 7, 2008

Hi again !

We all have those woes and fears, unfortunatley. The good news is that Guthrie got AMAZING correction in his first cast and it is extremely early to know what course of treatment he will need in the future. Some kiddos experience no correction in 3 or 4 casts and then finally get some improvement again. Most docs will alternate between casting and bracing for as long as possible before they start doing any type of surgery. You need to hold on to that and to the hope that your son will improve with casting. For now, I would educate yourself on the surgical procedures to get a rough idea about what they entail and then cross that bridge if it ever comes your way. (Praying it doesn't, of course!)

The first 2 weeks for Noelle was rough, but now she is as fearless as ever! In time, I think Guthrie will be the same. As he adjusts, cast life and movement will become a natural part of him. Poise pads were my saving grace in the diaper. You can also use Hy tape to secure the moleskin better to the cast. I am careful to use a bib always with Noelle when she eats, but there is always some type of crumb down there when they cut that cast off! LOL Noelle once fell backwards down our steps onto our hardwood floors and the cast did not break... We were afraid of that, too, but no problems so far.... They are pretty sturdy.

I still have a hard time with pants for Noelle.... Knit pants from Gymboree and carter have worked the best. Also, onesie shirts that snap under the crotch usually keep pants from sliding down. Children's place has those pretty often.....

I always get the blues for about a week after every casting before I begin to feel better. This is your first one, so that's even harder..... Hang in there... I promise it will get easier!

Hugs, Steph

Subject: Looking for help/input from more experienced familiesTo: "C.A.S.T." <infantile_scoliosis >Date: Saturday, December 6, 2008, 3:05 PM

Hi -We are just back from our son, Guthrie¢s, first casting in Rochester, and we are looking for any help or input from more experienced families. Guthrie is 25 months old. He had a 58 degree Cobb angle before his cast, and in the cast he is measuring a 30 degree Cobb angle. He was diagnosed a month ago.It's been an emotional roller coaster ride these last few days. Guthrie is sleeping well, seems comfortable in his stroller, car seat and high chair -- and generally he's learning to get around quite well. But those moments when he's scared or can't do what he wants to do are hard. He's currently terrified of stairs, but when we toss his pacifier a few steps ahead of him (going up or going down) on the steps, he immediately scampers for it and forgets the obstacle in front of him. It's heartwarming and hysterical! We are learning about trimming and reapplying the copious amounts of moleskin that constantly

peel off his cast. The moleskin edges roll up and stick to Guthrie's clothes, and then roll up even more. We are learning about diapering, too, and not at all confident about it yet. Two days out from the casting procedure, and Guthrie still hasn't taken a poop, so our teeth are clenched waiting! We're trying to use panty liners to protect the back of the cast, but everything just seems like a disaster with the diaper -- bunching, sliding, drooping, etc. I am going to search these posts immediately for as much diapering advice as possible!We are concerned about food dropping down into the front of the cast, and we're concerned about Guthrie breaking the cast (our doctor said he has one patient who breaks his cast every time, and Guthrie is incredibly physical, so yikes!).Since Guthrie was diagnosed so recently, and we are (thankfully) in his first cast already, we are trying to learn as quickly as possible, and it's so much to absorb! We

ask tons of questions to our doctors, but somehow we still feel we don't totally understand what's in front of us. Some days this feels normal and manageable, and some days it feels the opposite. Guthrie clearly is the same little wonderful guy in his cast, so we know it's all ok.Our big question is still about understanding what the different treatment paths might be. I think this captures what our doctor has told us about Guthrie's probable path: if casting is working, our doctor would consider casting Guthrie until he was 5 or so; then, if Guthrie¢s spine is not straight after casting, Guthrie would have spinal rod extension surgeries for 2, 3, 4 years (until scarring made it impossible to do another surgery); and then when Guthrie was as old as possible, hopefully not earlier than age 10, Guthrie would have definitive spinal fusion surgery, which would be the end of his treatment. Everything with casting and the extension rods is to delay

the definitive spinal fusion for as long as possible, and in Guthrie's case we'd be lucky to make it to 10 years old. Of course, we hold some hope that the casting alone will straighten Guthrie's spine, but we are also trying to be very sober and realistic. Still, some of the math of the treatment course described by our doctor remains unclear to us -- for example, if the casting doesn't seem to be working (and how/when will we know that?), could Guthrie begin getting extension rods this year, and then therefore have spinal fusion when he was only 5 or 6? And what about bracing to delay spinal fusion as long as possible? Our doctor described bracing as the same as doing nothing right now, so would that be true in a few years when Guthrie¢s older? Sigh.If anyone has wisdom they'd like to share in regards to any the subjects I've touched on here, we would welcome it happily -- either posted to the group, or sent in confidence if you

prefer.Thank you, and good luck to everyone --amanda@catmanandmar y.com

December 7, 2008

Hi ,Glad Guthrie is doing well with his cast. With my son, , the first couple of weeks were awful, BUT no worries it will get better. Guthrie will figure it all out and find new ways to do things. He will amaze you!I always made sure had a shirt on to prevent food from getting down the cast. was 15 months old so I was also able to keep a bib on him for a while along with a shirt.Diapering is a challenge. We used Poise pads inside the diaper. Placed in it just like you would wear a sanitary napkin. Everyone has different things they have tried and you will figure out what works best for you guys. **VERY IMPORTANT*** tuck as much of the diaper as possible up inside the cast!As far as treatment I think it is far too soon to really know. It is

only his first cast......every child is different and responds differently to casting. I would hang on to the great results he got from his first cast and go from there. had really good correction in his first 2 casts.....casts 3-5 he just basically stayed the same. Then his last cast he had a 5 degree improvement. Casting got him from 35 degrees down to 15 and then he went into a brace.Don't give up hope that casting

will correct his spine and if nothing else buy him some precious time.Use this time to research and study up on everything(surgical treatment). Although you may not need them.Keep us posted.TashaMommy of twin boys- and 3 1/2 years oldFort Worth, Texas is currently in a brace at night.Casting 14 months.Subject: Looking for help/input from more experienced familiesTo: "C.A.S.T." <infantile_scoliosis >Date: Saturday, December 6, 2008, 9:05 AM

Hi -

We are just back from our son, Guthrie¢s, first casting in Rochester, and we are looking for any help or input from more experienced families. Guthrie is 25 months old. He had a 58 degree Cobb angle before his cast, and in the cast he is measuring a 30 degree Cobb angle. He was diagnosed a month ago.

It's been an emotional roller coaster ride these last few days. Guthrie is sleeping well, seems comfortable in his stroller, car seat and high chair -- and generally he's learning to get around quite well. But those moments when he's scared or can't do what he wants to do are hard. He's currently terrified of stairs, but when we toss his pacifier a few steps ahead of him (going up or going down) on the steps, he immediately scampers for it and forgets the obstacle in front of him. It's heartwarming and hysterical!

We are learning about trimming and reapplying the copious amounts of moleskin that constantly peel off his cast. The moleskin edges roll up and stick to Guthrie's clothes, and then roll up even more. We are learning about diapering, too, and not at all confident about it yet. Two days out from the casting procedure, and Guthrie still hasn't taken a poop, so our teeth are clenched waiting! We're trying to use panty liners to protect the back of the cast, but everything just seems like a disaster with the diaper -- bunching, sliding, drooping, etc. I am going to search these posts immediately for as much diapering advice as possible!

We are concerned about food dropping down into the front of the cast, and we're concerned about Guthrie breaking the cast (our doctor said he has one patient who breaks his cast every time, and Guthrie is incredibly physical, so yikes!).

Since Guthrie was diagnosed so recently, and we are (thankfully) in his first cast already, we are trying to learn as quickly as possible, and it's so much to absorb! We ask tons of questions to our doctors, but somehow we still feel we don't totally understand what's in front of us. Some days this feels normal and manageable, and some days it feels the opposite. Guthrie clearly is the same little wonderful guy in his cast, so we know it's all ok.

Our big question is still about understanding what the different treatment paths might be. I think this captures what our doctor has told us about Guthrie's probable path: if casting is working, our doctor would consider casting Guthrie until he was 5 or so; then, if Guthrie¢s spine is not straight after casting, Guthrie would have spinal rod extension surgeries for 2, 3, 4 years (until scarring made it impossible to do another surgery); and then when Guthrie was as old as possible, hopefully not earlier than age 10, Guthrie would have definitive spinal fusion surgery, which would be the end of his treatment. Everything with casting and the extension rods is to delay the definitive spinal fusion for as long as possible, and in Guthrie's case we'd be lucky to make it to 10 years old.

Of course, we hold some hope that the casting alone will straighten Guthrie's spine, but we are also trying to be very sober and realistic. Still, some of the math of the treatment course described by our doctor remains unclear to us -- for example, if the casting doesn't seem to be working (and how/when will we know that?), could Guthrie begin getting extension rods this year, and then therefore have spinal fusion when he was only 5 or 6? And what about bracing to delay spinal fusion as long as possible? Our doctor described bracing as the same as doing nothing right now, so would that be true in a few years when Guthrie¢s older? Sigh.

If anyone has wisdom they'd like to share in regards to any the subjects I've touched on here, we would welcome it happily -- either posted to the group, or sent in confidence if you prefer.

Thank you, and good luck to everyone --

amanda@catmanandmar y.com

December 7, 2008

Sounds like you are off to a great start with casting. Just wanted to let you know that we had the best luck with using Hy-Tape (orange spongy like tape we got from the hospital or ordered on-line) to tape the edges of the moleskin down. It also made it more waterproof. We tried duct tape, hockey tape, and many others but had the best luck with the Hy-tape. If you google it, you can find multiple website that sell it or perhaps you can get some from your doc. Also, keep an eye on the BM situation as they can get constipated and then you have to treat that and can end up with the opposite situation. Out doc had us give our daughter a small dose (1/2 or 1/3 dose) of Miralax to help keep her regular without causing "blow outs". If you do have that happen, you can undo the tape around the bottom of the cast to un-attach the undershirt then pull it down and wash with a wash cloth and gentle soap (we used Cytaphil) then blow dry with a hair dryer on cool setting. When 100% clean and dry, then reapply new moleskin and tape around the bottom. Good luck!

Looking for help/input from more experienced families

Hi -We are just back from our son, Guthrie’s, first casting in Rochester, and we are looking for any help or input from more experienced families. Guthrie is 25 months old. He had a 58 degree Cobb angle before his cast, and in the cast he is measuring a 30 degree Cobb angle. He was diagnosed a month ago.It's been an emotional roller coaster ride these last few days. Guthrie is sleeping well, seems comfortable in his stroller, car seat and high chair -- and generally he's learning to get around quite well. But those moments when he's scared or can't do what he wants to do are hard. He's currently terrified of stairs, but when we toss his pacifier a few steps ahead of him (going up or going down) on the steps, he immediately scampers for it and forgets the obstacle in front of him. It's heartwarming and hysterical! We are learning about trimming and reapplying the copious amounts of moleskin that constantly peel off his cast. The moleskin edges roll up and stick to Guthrie's clothes, and then roll up even more. We are learning about diapering, too, and not at all confident about it yet. Two days out from the casting procedure, and Guthrie still hasn't taken a poop, so our teeth are clenched waiting! We're trying to use panty liners to protect the back of the cast, but everything just seems like a disaster with the diaper -- bunching, sliding, drooping, etc. I am going to search these posts immediately for as much diapering advice as possible!We are concerned about food dropping down into the front of the cast, and we're concerned about Guthrie breaking the cast (our doctor said he has one patient who breaks his cast every time, and Guthrie is incredibly physical, so yikes!).Since Guthrie was diagnosed so recently, and we are (thankfully) in his first cast already, we are trying to learn as quickly as possible, and it's so much to absorb! We ask tons of questions to our doctors, but somehow we still feel we don't totally understand what's in front of us. Some days this feels normal and manageable, and some days it feels the opposite. Guthrie clearly is the same little wonderful guy in his cast, so we know it's all ok.Our big question is still about understanding what the different treatment paths might be. I think this captures what our doctor has told us about Guthrie's probable path: if casting is working, our doctor would consider casting Guthrie until he was 5 or so; then, if Guthrie’s spine is not straight after casting, Guthrie would have spinal rod extension surgeries for 2, 3, 4 years (until scarring made it impossible to do another surgery); and then when Guthrie was as old as possible, hopefully not earlier than age 10, Guthrie would have definitive spinal fusion surgery, which would be the end of his treatment. Everything with casting and the extension rods is to delay the definitive spinal fusion for as long as possible, and in Guthrie's case we'd be lucky to make it to 10 years old. Of course, we hold some hope that the casting alone will straighten Guthrie's spine, but we are also trying to be very sober and realistic. Still, some of the math of the treatment course described by our doctor remains unclear to us -- for example, if the casting doesn't seem to be working (and how/when will we know that?), could Guthrie begin getting extension rods this year, and then therefore have spinal fusion when he was only 5 or 6? And what about bracing to delay spinal fusion as long as possible? Our doctor described bracing as the same as doing nothing right now, so would that be true in a few years when Guthrie’s older? Sigh.If anyone has wisdom they'd like to share in regards to any the subjects I've touched on here, we would welcome it happily -- either posted to the group, or sent in confidence if you prefer.Thank you, and good luck to everyone --amandacatmanandmary

December 7, 2008

Hi ,

Welcome to this wonderful group, you are going to get to hear a lot of stories, many with less problems, and a lot with more...I want to give you some hope as far as the casting goes. Doctors are often so blunt and have no faith in what God can do for our little kids. Casting should not be looked at as if you are doing "nothing". You will be amazed at how well it can help maintain and most often improve the curve of you child. If the doctor has experience with the POP casting of Dr. Mehta, then you will see results. Already you are down to 30 degrees from 50, that is a great improvement....Now the next one should hopefully take you from 30 degrees down some more. Santi my son went from 50 degrees at years old to 23 degrees by the age of 4 after 2 castings. Now at the age of 6 he maintains in the low 30s, thus we gained several years and decreased his curve a great deal from the original 50.

No brace could have done that..Not only are you buying time, you may be saving your child from a few too many surgerys. The idea of the spinal fusion is complicated and every doctor will tell you something different. I would most definatly get a second opinion before I placed my young child under the knife. Santi´s doctor is one who will wait as long as possible before he will operate. As long as no vital organs are being placed in danger, then waiting might be an option. I think you child is really young to already be talking about spinal fusion. You just focus right now on the casting and you will see those numbers go down and down. There are many kids here that have had even higher curves and some went completely straight after several years of casting. Unfortunatly, my son had to stop because he has a muscle disease that creates hypontonia complications, thus we couldn´t keep

going as much as I insisted, it just couldn´t happen. You never know what the future will hold for you child. Take it one day at a time and have faith that this casting will be what is needed. If not, that road is still a long way away, you never know what new technology will be available. Look into some alternative methods meanwhile. Santi has benefited oo much with swimming. It is amazing how much it has helped, even his doctor gives a lot of credit to the swimming.. I know PT is a little mixed in what people think about it. I however am one who believe that with certain children, it can help a great deal..Especially those with weakened muscles, balance problems and discompensation of the body strength. You know your child better then anyone, and remember this group is wonderful; full of intelligent, bright, and concerned parents.

Don´t hesitate to ask whatever you want. Good luck and let us know of the progress.

Sincerely,

Kelli and Santiago

Subject: Re: Looking for help/input from more experienced familiesTo: infantile_scoliosis Date: Sunday, December 7, 2008, 8:28 AM

Sounds like you are off to a great start with casting. Just wanted to let you know that we had the best luck with using Hy-Tape (orange spongy like tape we got from the hospital or ordered on-line) to tape the edges of the moleskin down. It also made it more waterproof. We tried duct tape, hockey tape, and many others but had the best luck with the Hy-tape. If you google it, you can find multiple website that sell it or perhaps you can get some from your doc. Also, keep an eye on the BM situation as they can get constipated and then you have to treat that and can end up with the opposite situation. Out doc had us give our daughter a small dose (1/2 or 1/3 dose) of Miralax to help keep her regular without causing "blow outs". If you do have that happen, you can undo the tape around the bottom of the cast to un-attach the undershirt then pull it down and wash with a wash cloth and gentle soap (we used Cytaphil) then

blow dry with a hair dryer on cool setting. When 100% clean and dry, then reapply new moleskin and tape around the bottom. Good luck!

[infantile_scoliosi s] Looking for help/input from more experienced families

Hi -We are just back from our son, Guthrie’s, first casting in Rochester, and we are looking for any help or input from more experienced families. Guthrie is 25 months old. He had a 58 degree Cobb angle before his cast, and in the cast he is measuring a 30 degree Cobb angle. He was diagnosed a month ago.It's been an emotional roller coaster ride these last few days. Guthrie is sleeping well, seems comfortable in his stroller, car seat and high chair -- and generally he's learning to get around quite well. But those moments when he's scared or can't do what he wants to do are hard. He's currently terrified of stairs, but when we toss his pacifier a few steps ahead of him (going up or going down) on the steps, he immediately scampers for it and forgets the obstacle in front of him. It's heartwarming and hysterical! We are learning about trimming and reapplying the copious amounts of moleskin that constantly

peel off his cast. The moleskin edges roll up and stick to Guthrie's clothes, and then roll up even more. We are learning about diapering, too, and not at all confident about it yet. Two days out from the casting procedure, and Guthrie still hasn't taken a poop, so our teeth are clenched waiting! We're trying to use panty liners to protect the back of the cast, but everything just seems like a disaster with the diaper -- bunching, sliding, drooping, etc. I am going to search these posts immediately for as much diapering advice as possible!We are concerned about food dropping down into the front of the cast, and we're concerned about Guthrie breaking the cast (our doctor said he has one patient who breaks his cast every time, and Guthrie is incredibly physical, so yikes!).Since Guthrie was diagnosed so recently, and we are (thankfully) in his first cast already, we are trying to learn as quickly as possible, and it's so much to absorb! We

ask tons of questions to our doctors, but somehow we still feel we don't totally understand what's in front of us. Some days this feels normal and manageable, and some days it feels the opposite. Guthrie clearly is the same little wonderful guy in his cast, so we know it's all ok.Our big question is still about understanding what the different treatment paths might be. I think this captures what our doctor has told us about Guthrie's probable path: if casting is working, our doctor would consider casting Guthrie until he was 5 or so; then, if Guthrie’s spine is not straight after casting, Guthrie would have spinal rod extension surgeries for 2, 3, 4 years (until scarring made it impossible to do another surgery); and then when Guthrie was as old as possible, hopefully not earlier than age 10, Guthrie would have definitive spinal fusion surgery, which would be the end of his treatment. Everything with casting and the extension rods is to delay

the definitive spinal fusion for as long as possible, and in Guthrie's case we'd be lucky to make it to 10 years old. Of course, we hold some hope that the casting alone will straighten Guthrie's spine, but we are also trying to be very sober and realistic. Still, some of the math of the treatment course described by our doctor remains unclear to us -- for example, if the casting doesn't seem to be working (and how/when will we know that?), could Guthrie begin getting extension rods this year, and then therefore have spinal fusion when he was only 5 or 6? And what about bracing to delay spinal fusion as long as possible? Our doctor described bracing as the same as doing nothing right now, so would that be true in a few years when Guthrie’s older? Sigh.If anyone has wisdom they'd like to share in regards to any the subjects I've touched on here, we would welcome it happily -- either posted to the group, or sent in confidence if you

prefer.Thank you, and good luck to everyone --amanda@catmanandmar y.com

December 8, 2008

Hello -

I just wanted to put out a warm thank you to everyone who has been

responding to my posts. In messages both posted to the group and sent

to me privately, I have received such great advice, comfort and

encouragement. Thank you all! I'll keep you posted on Guthrie --

Gratefully,

>

> Subject: Re: Looking for help/input from more

experienced families

> To: infantile_scoliosis

> Date: Sunday, December 7, 2008, 8:28 AM

>

> Sounds like you are off to a great start with casting. Just wanted

to let you know that we had the best luck with using Hy-Tape (orange

spongy like tape we got from the hospital or ordered on-line) to tape

the edges of the moleskin down. It also made it more waterproof. We

tried duct tape, hockey tape, and many others but had the best luck

with the Hy-tape. If you google it, you can find multiple website that

sell it or perhaps you can get some from your doc. Also, keep an eye

on the BM situation as they can get constipated and then you have to

treat that and can end up with the opposite situation. Out doc had us

give our daughter a small dose (1/2 or 1/3 dose) of Miralax to help

keep her regular without causing " blow outs " . If you do have that

happen, you can undo the tape around the bottom of the cast to

un-attach the undershirt then pull it down and wash with a wash cloth

and gentle soap (we used Cytaphil) then blow dry with a hair dryer on cool

> setting. When 100% clean and dry, then reapply new moleskin and

tape around the bottom. Good luck!

>

> [infantile_scoliosi s] Looking for help/input from more

experienced families

>

> Hi -

>

> We are just back from our son, Guthrie's, first casting in

Rochester, and we are looking for any help or input from more

experienced families. Guthrie is 25 months old. He had a 58 degree

Cobb angle before his cast, and in the cast he is measuring a 30

degree Cobb angle. He was diagnosed a month ago.

>

> It's been an emotional roller coaster ride these last few days.

Guthrie is sleeping well, seems comfortable in his stroller, car seat

and high chair -- and generally he's learning to get around quite

well. But those moments when he's scared or can't do what he wants to

do are hard. He's currently terrified of stairs, but when we toss his

pacifier a few steps ahead of him (going up or going down) on the

steps, he immediately scampers for it and forgets the obstacle in

front of him. It's heartwarming and hysterical!

>

> We are learning about trimming and reapplying the copious amounts of

moleskin that constantly peel off his cast. The moleskin edges roll up

and stick to Guthrie's clothes, and then roll up even more. We are

learning about diapering, too, and not at all confident about it yet.

Two days out from the casting procedure, and Guthrie still hasn't

taken a poop, so our teeth are clenched waiting! We're trying to use

panty liners to protect the back of the cast, but everything just

seems like a disaster with the diaper -- bunching, sliding, drooping,

etc. I am going to search these posts immediately for as much

diapering advice as possible!

>

> We are concerned about food dropping down into the front of the

cast, and we're concerned about Guthrie breaking the cast (our doctor

said he has one patient who breaks his cast every time, and Guthrie is

incredibly physical, so yikes!).

>

> Since Guthrie was diagnosed so recently, and we are (thankfully) in

his first cast already, we are trying to learn as quickly as possible,

and it's so much to absorb! We ask tons of questions to our doctors,

but somehow we still feel we don't totally understand what's in front

of us. Some days this feels normal and manageable, and some days it

feels the opposite. Guthrie clearly is the same little wonderful guy

in his cast, so we know it's all ok..

>

> Our big question is still about understanding what the different

treatment paths might be. I think this captures what our doctor has

told us about Guthrie's probable path: if casting is working, our

doctor would consider casting Guthrie until he was 5 or so; then, if

Guthrie's spine is not straight after casting, Guthrie would have

spinal rod extension surgeries for 2, 3, 4 years (until scarring made

it impossible to do another surgery); and then when Guthrie was as old

as possible, hopefully not earlier than age 10, Guthrie would have

definitive spinal fusion surgery, which would be the end of his

treatment. Everything with casting and the extension rods is to delay

the definitive spinal fusion for as long as possible, and in Guthrie's

case we'd be lucky to make it to 10 years old.

>

> Of course, we hold some hope that the casting alone will straighten

Guthrie's spine, but we are also trying to be very sober and

realistic. Still, some of the math of the treatment course described

by our doctor remains unclear to us -- for example, if the casting

doesn't seem to be working (and how/when will we know that?), could

Guthrie begin getting extension rods this year, and then therefore

have spinal fusion when he was only 5 or 6? And what about bracing to

delay spinal fusion as long as possible? Our doctor described bracing

as the same as doing nothing right now, so would that be true in a few

years when Guthrie's older? Sigh.

>

> If anyone has wisdom they'd like to share in regards to any the

subjects I've touched on here, we would welcome it happily -- either

posted to the group, or sent in confidence if you prefer.

>

> Thank you, and good luck to everyone --

>

> amanda@catmanandmar y.com

>

December 8, 2008

Hi ,

As you know, every child is

different. My daughter has had curves over 100 degrees twice in her short

life, and she still hasn’t had fusion. She will be 11 on Christmas

Eve. There are a few different surgical and non surgical approaches to treating

small children with big curves. Proper EDF casting is essential in buying

invaluable growth time, correction, improving overall body shape, etc……Serial

casting has the potential to do wonders for Guthrie. In the meantime, look

over the halo booklet, and all other pertinent articles in the FILES section of

CAST. Other than that, try not to worry. Let’s see what the

first series of EDF jackets can accomplish!

Sincerely,

HRH

From: infantile_scoliosis [mailto:infantile_scoliosis ] On Behalf Of Ansorge

Sent: Saturday, December 06, 2008

8:05 AM

To: C.A.S.T.

Subject:

Looking for help/input from more experienced families

Hi

-

We are just back from our son, Guthrie’s, first casting in Rochester, and we are looking for any help or input from more experienced families.

Guthrie is 25 months old. He had a 58 degree Cobb angle before his cast, and in

the cast he is measuring a 30 degree Cobb angle. He was diagnosed a month ago.

It's been an emotional roller coaster ride these last few days. Guthrie is

sleeping well, seems comfortable in his stroller, car seat and high chair --

and generally he's learning to get around quite well. But those moments when

he's scared or can't do what he wants to do are hard. He's currently terrified

of stairs, but when we toss his pacifier a few steps ahead of him (going up or

going down) on the steps, he immediately scampers for it and forgets the

obstacle in front of him. It's heartwarming and hysterical!

We are learning about trimming and reapplying the copious amounts of moleskin

that constantly peel off his cast. The moleskin edges roll up and stick to

Guthrie's clothes, and then roll up even more. We are learning about diapering,

too, and not at all confident about it yet. Two days out from the casting

procedure, and Guthrie still hasn't taken a poop, so our teeth are clenched

waiting! We're trying to use panty liners to protect the back of the cast, but

everything just seems like a disaster with the diaper -- bunching, sliding,

drooping, etc. I am going to search these posts immediately for as much

diapering advice as possible!

We are concerned about food dropping down into the front of the cast, and we're

concerned about Guthrie breaking the cast (our doctor said he has one patient

who breaks his cast every time, and Guthrie is incredibly physical, so yikes!).

Since Guthrie was diagnosed so recently, and we are (thankfully) in his first

cast already, we are trying to learn as quickly as possible, and it's so much

to absorb! We ask tons of questions to our doctors, but somehow we still feel

we don't totally understand what's in front of us. Some days this feels normal

and manageable, and some days it feels the opposite. Guthrie clearly is the

same little wonderful guy in his cast, so we know it's all ok.

Our big question is still about understanding what the different treatment

paths might be. I think this captures what our doctor has told us about

Guthrie's probable path: if casting is working, our doctor would consider

casting Guthrie until he was 5 or so; then, if Guthrie’s spine is not

straight after casting, Guthrie would have spinal rod extension surgeries for

2, 3, 4 years (until scarring made it impossible to do another surgery); and

then when Guthrie was as old as possible, hopefully not earlier than age 10,

Guthrie would have definitive spinal fusion surgery, which would be the end of

his treatment. Everything with casting and the extension rods is to delay the

definitive spinal fusion for as long as possible, and in Guthrie's case we'd be

lucky to make it to 10 years old.

Of course, we hold some hope that the casting alone will straighten Guthrie's

spine, but we are also trying to be very sober and realistic. Still, some of

the math of the treatment course described by our doctor remains unclear to us

-- for example, if the casting doesn't seem to be working (and how/when will we

know that?), could Guthrie begin getting extension rods this year, and then

therefore have spinal fusion when he was only 5 or 6? And what about bracing to

delay spinal fusion as long as possible? Our doctor described bracing as the

same as doing nothing right now, so would that be true in a few years when Guthrie’s

older? Sigh.

If anyone has wisdom they'd like to share in regards to any the subjects I've

touched on here, we would welcome it happily -- either posted to the group, or

sent in confidence if you prefer.

Thank you, and good luck to everyone --

amandacatmanandmary

December 8, 2008

,

You are doing the right thing by seeking information on the surgeries, etc., but try not to get too worried about that just yet. The casting might be able to hold off the surgeries for quite a long time or perhaps even reduce the curve to a point that surgery isn't even necessary. Diapering was certainly our biggest headache with the casting. As everyone has said, tucking the diaper under is the number one most important tip. We tried diaper doublers and putting a pull-up over the diaper for night time sleeping. The thing that worked the best for us was putting some poise pads around the edges in the front of the diaper at night time. We sometimes got lazy though and did not do this and we did have a few urine leaks onto the t-shirt. We would pull the t-shirt down, wash it off, replace any soiled padding, use a hairdryer to dry it and then reapply the tape, etc. We did have one or two

blow-out incidents when he was on some antibiotics. That was pretty messy, but we were able to pull the shirt down and cut off the soiled parts and since it was so stretchy we still had enough shirt that we were able to stretch it and tape it at the bottom. As far as food getting down the cast, we used a bib and always had a shirt over the cast when he ate. That took care of most of the problem, but everytime we had a cast removed we found 2-3 cheerios and one time a gold fish. Surprisingly, these food items were usually on the back of the cast...I don't know how he managed that. The gold fish was his last cast and it was kind of humerous, because he had a little smiling goldfish imprint on his skin for a couple days after the cast came off. It seemed to me that the cheerio or goldfish would have been uncomfortable, but if it was, he never complained about it. Usually at some point during his

casting, the cast would loosen a little bit and I would try to use a wet wipe and reach in as far as I could to get any debris out. I don't think this is really recommended, but it worked for us.

To: C.A.S.T. <infantile_scoliosis >Sent: Saturday, December 6, 2008 10:05:26 AMSubject: Looking for help/input from more experienced families

Hi -We are just back from our son, Guthrie¢s, first casting in Rochester, and we are looking for any help or input from more experienced families. Guthrie is 25 months old. He had a 58 degree Cobb angle before his cast, and in the cast he is measuring a 30 degree Cobb angle. He was diagnosed a month ago.It's been an emotional roller coaster ride these last few days. Guthrie is sleeping well, seems comfortable in his stroller, car seat and high chair -- and generally he's learning to get around quite well. But those moments when he's scared or can't do what he wants to do are hard. He's currently terrified of stairs, but when we toss his pacifier a few steps ahead of him (going up or going down) on the steps, he immediately scampers for it and forgets the obstacle in front of him. It's heartwarming and hysterical! We are learning about trimming and reapplying the copious amounts of moleskin that constantly

peel off his cast. The moleskin edges roll up and stick to Guthrie's clothes, and then roll up even more. We are learning about diapering, too, and not at all confident about it yet. Two days out from the casting procedure, and Guthrie still hasn't taken a poop, so our teeth are clenched waiting! We're trying to use panty liners to protect the back of the cast, but everything just seems like a disaster with the diaper -- bunching, sliding, drooping, etc. I am going to search these posts immediately for as much diapering advice as possible!We are concerned about food dropping down into the front of the cast, and we're concerned about Guthrie breaking the cast (our doctor said he has one patient who breaks his cast every time, and Guthrie is incredibly physical, so yikes!).Since Guthrie was diagnosed so recently, and we are (thankfully) in his first cast already, we are trying to learn as quickly as possible, and it's so much to absorb! We

ask tons of questions to our doctors, but somehow we still feel we don't totally understand what's in front of us. Some days this feels normal and manageable, and some days it feels the opposite. Guthrie clearly is the same little wonderful guy in his cast, so we know it's all ok.Our big question is still about understanding what the different treatment paths might be. I think this captures what our doctor has told us about Guthrie's probable path: if casting is working, our doctor would consider casting Guthrie until he was 5 or so; then, if Guthrie¢s spine is not straight after casting, Guthrie would have spinal rod extension surgeries for 2, 3, 4 years (until scarring made it impossible to do another surgery); and then when Guthrie was as old as possible, hopefully not earlier than age 10, Guthrie would have definitive spinal fusion surgery, which would be the end of his treatment. Everything with casting and the extension rods is to delay

the definitive spinal fusion for as long as possible, and in Guthrie's case we'd be lucky to make it to 10 years old. Of course, we hold some hope that the casting alone will straighten Guthrie's spine, but we are also trying to be very sober and realistic. Still, some of the math of the treatment course described by our doctor remains unclear to us -- for example, if the casting doesn't seem to be working (and how/when will we know that?), could Guthrie begin getting extension rods this year, and then therefore have spinal fusion when he was only 5 or 6? And what about bracing to delay spinal fusion as long as possible? Our doctor described bracing as the same as doing nothing right now, so would that be true in a few years when Guthrie¢s older? Sigh.If anyone has wisdom they'd like to share in regards to any the subjects I've touched on here, we would welcome it happily -- either posted to the group, or sent in confidence if you

prefer.Thank you, and good luck to everyone --amanda@catmanandmar y.com

December 8, 2008