Re: 1st Cast Advice

[Guest guest]

Cathleen,

First I want to say it is so awesome you found her daughters scoliosis so early and are getting treated early. That I beleive has a big impact on treatment.

We did not start casting Hadley until she was 11 months old so i dont know exactly what it is like to cast an infant, but it will be somewhat similar! I think the best way to get to know how to take care of her cast is experience.

As for diapers, a lot of mom's use the pampers cruisers. I use LUVS and they work amazing! They are thin on top and easier to tuck into the diaper. When we first got Hadley cast, we tried putting the diaper over the cast and it does not work at all, it has to be tucked. If you havent already, I beleive there is instructions on the ISOP website or they will give some to you when you get her cast on too. But like i said, it will just take experience to figure out what exactly works for you and your daughter. At night, we also put a maxi pad on the front of the diaper before we tuck it to ensure any leaks.

As for carseats, we didnt have any problems with ours, but I'm not sure if any other moms had.

FOr spit up and things like that, i would say just keep a bib on your baby a lot. Thats what I did and sometimes still do when she is teething. Otherwise, she leaks through her shirt and gets her cast wet and after a while it stinks.

This might sound silly, but when Hadley eats, I also put a shower cap on her head because babies are messy and they like to get it everywhere, even in their hair. And since you just cant dump them in the tub afterwards, this protects them so you dont always have to rewash their hair.

For hair washing, there are also instructions on the ISOP site. YOu just lay your child over the sink and wash their hair, then just wipe there little bodies down where you can.

I do not think a cast will slow your baby way down. She will just do things a little differently, but that is all she will know. Hadley developed a hop when she crawled in order to get around since her legs wouldnt bend up very well to be in the crawl position. She just learned to walk and did it all with her cast on. She is only 16 months so she is not behind at all. One of my daughters favorite things when she first got her cast was her jumperoo or excersaucer. Until she got used to it, then she like toys that were up a little higher. So, i put all her little toys on a table so when she was sitting, she could reach them because it is hard for her to get things on the floor wihtout being able to bend over well from the cast.

You will get the hang on the cast in no time. Hope this helps a little bit! Good luck with her first cast and let us know how everything goes!!!

Shauna

Subject: 1st Cast AdviceTo: infantile_scoliosis Date: Monday, September 8, 2008, 12:24 PM

Hi all. My daughter Farren will have her first cast put on the first week in October in SLC. Her scoliosis was diagnosed prenatly via MRI and has been progressing fairly rapidly. Her curve as of early July was just shy of 60 degrees. She's currently 6 months old. As we live quite a distance from SLC (outside Washington DC), our initial evaluation was done via email and phone. So, the day before casting will be our first opportunity to meet with the Shriner's doctor/staff and really understand the implications of life with an infant in a cast as well as the medical impacts. To try and best prepare ourselves, I would appreciate any advice anyone can offer. Things that perplex me include what do I dress her in? how do I handle the spit-up of a reflux baby? will her infant car seat work? are diapers going to be as big a challenge as I think they will? and things of that

nature...Has anyone else had their child casted so young? If so, did it slow any physical development?Thank you all for being such a wealth of knowledge and support. Cathleen

[Guest guest]

I like the shower cap idea I'm going to try that. Food in the hair is a major problem for my son. ~Krista

From: cathleentitcomb <CathleenT04@ aol.com>Subject: [infantile_scoliosi s] 1st Cast AdviceTo: infantile_scoliosis @yahoogroups. comDate: Monday, September 8, 2008, 12:24 PM

Hi all. My daughter Farren will have her first cast put on the first week in October in SLC. Her scoliosis was diagnosed prenatly via MRI and has been progressing fairly rapidly. Her curve as of early July was just shy of 60 degrees. She's currently 6 months old. As we live quite a distance from SLC (outside Washington DC), our initial evaluation was done via email and phone. So, the day before casting will be our first opportunity to meet with the Shriner's doctor/staff and really understand the implications of life with an infant in a cast as well as the medical impacts. To try and best prepare ourselves, I would appreciate any advice anyone can offer. Things that perplex me include what do I dress her in? how do I handle the spit-up of a reflux baby? will her infant car seat work? are diapers going to be as big a challenge as I think they will? and things of that

nature...Has anyone else had their child casted so young? If so, did it slow any physical development?Thank you all for being such a wealth of knowledge and support. Cathleen

[Guest guest]

Hi Cathleen

Farren is in great hands in SLC. We also travel a fair distance from

Edmonton Alberta. The hospital and staff are awesome!!!

I cant help you on casting so young our son recieved his first cast

at about 11 months. Yes we did have to go up a size or two in

clothing. We mostly used pants with an elastic waist and t-shirts.

Diapering has always been a challenge and the first cast is the

hardest. We have always had a issue with a few leaky diapers you just

have to stay on top of that. Useing extra absorbant panty liners has

worked real well for us. When we casted at 11 months Dylan was just

sarting to stand. After the cast was put on all he did was lay on his

back. It was very disheartening and yes we did shed a lot of tears.

He could not do the things he could prior. But by the time we took

that cast off he was standing against furniture and adjusted very

well. Every cast we had in that first year of casting. Dylan had to

relearn everything over but by the time each cast was removed he was

able sit stand walk everything. I think it is harder on the parents

than it is on these little ones.

Darrell

>

> Hi all. My daughter Farren will have her first cast put on the

> first week in October in SLC. Her scoliosis was diagnosed prenatly

> via MRI and has been progressing fairly rapidly. Her curve as of

> early July was just shy of 60 degrees. She's currently 6 months

> old.

>

> As we live quite a distance from SLC (outside Washington DC), our

> initial evaluation was done via email and phone. So, the day

before

> casting will be our first opportunity to meet with the Shriner's

> doctor/staff and really understand the implications of life with an

> infant in a cast as well as the medical impacts.

>

> To try and best prepare ourselves, I would appreciate any advice

> anyone can offer.

>

> Things that perplex me include what do I dress her in? how do I

> handle the spit-up of a reflux baby? will her infant car seat

> work? are diapers going to be as big a challenge as I think they

> will? and things of that nature...

>

> Has anyone else had their child casted so young? If so, did it

slow

> any physical development?

>

> Thank you all for being such a wealth of knowledge and support.

>

>

> Cathleen

>

[Guest guest]

Hi Cathleen,My son, , was 15 months old when he got his 1st cast, but I will help the best I can.BTW.....I do believe there are some moms on the group that had babies much younger than . Maybe even Farren's age.Anyway, with I always had a shirt on him and usually a bib to avoid it getting messy.Dressing him was a challenge. His pants/shorts would always fall below the cast if he tried to bend over. This made him pretty upset. Needless to say he is very picky now about his clothing. We tried to use elastic waist pants/shorts. Or 1 piece outfits. That should be easy since Farren is still so young. We did go up a size or 2. You may go to a second hand store and buy just a few things until you know for sure her size.Diapering.......WOW this is something you will just

have to play with and

figure out what works best for you. At first we did a smaller size diaper(less to tuck) with a sanitary pad inside-tucked up and inside the cast......all the way around. ****ALWAYS try to tuck as much as you can!!!****Later we switched to Poise pads. And a bigger diaper over everything. Eventually we only used the 1 diaper. We never had a problem with our ccar seat And its nothing special.Of course sponge baths are a must......at least for us. We went from a bath every night to every other and more if I could. We laid on the counter in the kitchen for his hair. I would comfort him while my husband washed his hair with the sprayer. He NEVER got use to this. Like I said you will find ways that work just for you guys. Think outside the box. She will do fine. She will adjust. She will amaze you! had just started walking prior to his 1st

cast. After he got his cast it took him a couple of weeks to adjust, but then he was at it again. He figured it all out and new ways to do things.He may have been a month behind on things, but eventually got it all. Some babies/children benefit from PT. We went through our state....Early Childhood Intervention. They came out eevaluated and told us what they thought and what we needed to do. Thankfully he did not need professional PT.I hope this helped you some. Keep us posted.TashaMommy of twin boys- and 3 years oldFort Worth, Texas is 7.5 degrees and brace free during the day!!!Casting 14 months and bracing 10 monthsFrom: cathleentitcomb

Subject: 1st Cast AdviceTo: infantile_scoliosis Date: Monday, September 8, 2008, 12:24 PM

Hi all. My daughter Farren will have her first cast put on the

first week in October in SLC. Her scoliosis was diagnosed prenatly

via MRI and has been progressing fairly rapidly. Her curve as of

early July was just shy of 60 degrees. She's currently 6 months

old.

As we live quite a distance from SLC (outside Washington DC), our

initial evaluation was done via email and phone. So, the day before

casting will be our first opportunity to meet with the Shriner's

doctor/staff and really understand the implications of life with an

infant in a cast as well as the medical impacts.

To try and best prepare ourselves, I would appreciate any advice

anyone can offer.

Things that perplex me include what do I dress her in? how do I

handle the spit-up of a reflux baby? will her infant car seat

work? are diapers going to be as big a challenge as I think they

will? and things of that nature...

Has anyone else had their child casted so young? If so, did it slow

any physical development?

Thank you all for being such a wealth of knowledge and support.

Cathleen

[Guest guest]

Hi Cathleen,Welcome. Our daughter, Keira, is in her 2nd cast and is being treated in SLC. Keira was 2 when she received her first cast, so I can't help you with words of advice as to infant life in a cast.I do know that in SLC they put an "undershirt" on under the cast, this helps keep the skin healthy (and also keeps them warm.) Most of the time we simply put a bib on Keira since she has a "shirt" on under the cast and she tends to overheat. Keira is older and wears her cast for 13-14 weeks, so we typically cut out the belly area when it gets grimey. SLC will "petal" the edges of the cast with moleskin for you. We also used hy tape (a waterproof tape) on the front of her cast to keep it clean and dry.We travel from Northern California to SLC and we were in the same situation as you where you arrive the day before casting and meet the

doctors. The staff and doctors at SLC are fabulous and do an excellent job of helping you through this process. If you have questions about the process or the doctors please feel free to email me privately and I would be happy to chat with you.Also, we did run into a problem with carseats, since the cast is anchored on the hips, we found that the "expensive" carseat we were using had too much contouring and padding and put Keira in a position where the cast was digging into her hips. We ended up going with an inexpensive seat that is basically flat up and down with no padding. This works for our daughter, but I know others used towels to adjust their infants position in the carseat. Ask the physician assistant in SLC for advice on sleeping/carseats positions using towels to prop them up, this was very helpful to us. And it is great to actually have someone show you how to do this.Let us know if you have more questions. I think life in

the cast is harder on the parents then the kids! LizSubject: 1st Cast AdviceTo: infantile_scoliosis Date: Monday, September 8, 2008, 10:24 AM

Hi all. My daughter Farren will have her first cast put on the

first week in October in SLC. Her scoliosis was diagnosed prenatly

via MRI and has been progressing fairly rapidly. Her curve as of

early July was just shy of 60 degrees. She's currently 6 months

old.

As we live quite a distance from SLC (outside Washington DC), our

initial evaluation was done via email and phone. So, the day before

casting will be our first opportunity to meet with the Shriner's

doctor/staff and really understand the implications of life with an

infant in a cast as well as the medical impacts.

To try and best prepare ourselves, I would appreciate any advice

anyone can offer.

Things that perplex me include what do I dress her in? how do I

handle the spit-up of a reflux baby? will her infant car seat

work? are diapers going to be as big a challenge as I think they

will? and things of that nature...

Has anyone else had their child casted so young? If so, did it slow

any physical development?

Thank you all for being such a wealth of knowledge and support.

Cathleen

[Guest guest]

Cathleen,

My daughter Sophia started casting at 8 months old (You can see her pics in the photo section under Sophia M.). After 8 casts in 14 months, she has now transitioned to a night time brace and is turning 2 in a couple weeks. The reflux is a touch issue. My daughter had very sever reflux as well as gastric delay emptying, which meant a lot of vomiting and spit ups before we started casting. This got a little worse with the cast and she started dropping weight the first 2 months- so you might want to get an accurate weight before and after the cast is applied so you can ensure she keeps gaining appropriately. We kept shirts on at all times and usually a bib over that.

In terms of diapers, we found Papers Cruisers worked best and usually a little on the small side of the weight range per size. If you have any other questions, please don't hesitate to ask. Good luck!

Tina (Mom to Sophia)

1st Cast AdviceTo: infantile_scoliosis Date: Monday, September 8, 2008, 12:24 PM

Hi all. My daughter Farren will have her first cast put on the first week in October in SLC. Her scoliosis was diagnosed prenatly via MRI and has been progressing fairly rapidly. Her curve as of early July was just shy of 60 degrees. She's currently 6 months old. As we live quite a distance from SLC (outside Washington DC), our initial evaluation was done via email and phone. So, the day before casting will be our first opportunity to meet with the Shriner's doctor/staff and really understand the implications of life with an infant in a cast as well as the medical impacts. To try and best prepare ourselves, I would appreciate any advice anyone can offer. Things that perplex me include what do I dress her in? how do I handle the spit-up of a reflux baby? will her infant car seat work? are diapers going to be as big a challenge as I think they will? and things of that nature...Has anyone else had their child casted so young? If so, did it slow any physical development?Thank you all for being such a wealth of knowledge and support. Cathleen

[Guest guest]

Hi Cathleen,

Welcome to the group.... This is a great place for information. My daughter had infantile scoli from birth and was finally casted at 18 months. She also has reflux. SLC is a great facility and you will be in great hands there. We go to Rochester NY and have had very good experiences. After the first casting, it took my daughter about 2 weeks to fully adjust to the cast. After that, kids are very resilient and move around and get back to their routines. I told my casting doc about Noelle's reflux and he was very good about giving her as much space as possible around the stomach. Diapering was a challenge at first, but we put diaper doublers in her diapers at naptime and Poise pads at night and they really help with leaky diapers. We always tuck the diaper into her cast. You can put some waterproof tape on the front of the cast for her if she spits up a lot. Usually sweats, pants

and regular jeans fall off of Noelle. We have had a lot of luck with onesie shirts and leggings or pants or skirts. Dresses work too. s has great sets and we've had luck with Gap stretch pants and Gymboree leggings. Hope that helps... Steph

Subject: 1st Cast AdviceTo: infantile_scoliosis Date: Monday, September 8, 2008, 5:24 PM

Hi all. My daughter Farren will have her first cast put on the first week in October in SLC. Her scoliosis was diagnosed prenatly via MRI and has been progressing fairly rapidly. Her curve as of early July was just shy of 60 degrees. She's currently 6 months old. As we live quite a distance from SLC (outside Washington DC), our initial evaluation was done via email and phone. So, the day before casting will be our first opportunity to meet with the Shriner's doctor/staff and really understand the implications of life with an infant in a cast as well as the medical impacts. To try and best prepare ourselves, I would appreciate any advice anyone can offer. Things that perplex me include what do I dress her in? how do I handle the spit-up of a reflux baby? will her infant car seat work? are diapers going to be as big a challenge as I think they will? and things of that

nature...Has anyone else had their child casted so young? If so, did it slow any physical development?Thank you all for being such a wealth of knowledge and support. Cathleen

[Guest guest]

Me too! I never thought of that!!!! Thanks Shauna! Steph

From: cathleentitcomb <CathleenT04@ aol.com>Subject: [infantile_scoliosi s] 1st Cast AdviceTo: infantile_scoliosis @yahoogroups. comDate: Monday, September 8, 2008, 12:24 PM

Hi all. My daughter Farren will have her first cast put on the first week in October in SLC. Her scoliosis was diagnosed prenatly via MRI and has been progressing fairly rapidly. Her curve as of early July was just shy of 60 degrees. She's currently 6 months old. As we live quite a distance from SLC (outside Washington DC), our initial evaluation was done via email and phone. So, the day before casting will be our first opportunity to meet with the Shriner's doctor/staff and really understand the implications of life with an infant in a cast as well as the medical impacts. To try and best prepare ourselves, I would appreciate any advice anyone can offer. Things that perplex me include what do I dress her in? how do I handle the spit-up of a reflux baby? will her infant car seat work? are diapers going to be as big a challenge as I think they will? and things of that

nature...Has anyone else had their child casted so young? If so, did it slow any physical development?Thank you all for being such a wealth of knowledge and support. Cathleen

[Guest guest]

Cathleen

My son Devyn was 19months when we started casting. Devyn had

severe acid reflux due to Chiari Malformation that he had surgery for

before casting. The surgery helped a little but he still sometimes

would throw up from the reflux. His first cast was the worst with

learning how to keep him dry. We tried to always keep a shirt on and

he was to old for a bib because he would take it off. The second and

third cast we got the colored duct tape and taped the bar of the cast

that is under the chin just like they wrap the mole skin. It seemed

to work, whatever went through the shirt didn't soak into the cast

because it would hit the tape. Diapering is a challenge at first but

once you figure out what works best for your child you get it down to

a science. Sorry can't help with the infant car seat thing Devyn was

in a high back car seat when we started. Good luck let us know what

else we can help with.

Rochelle mom to Devyn almost 3 three weeks to go Infantile Scoliosis,

Chiari 1

>

> Hi all. My daughter Farren will have her first cast put on the

> first week in October in SLC. Her scoliosis was diagnosed prenatly

> via MRI and has been progressing fairly rapidly. Her curve as of

> early July was just shy of 60 degrees. She's currently 6 months

> old.

>

> As we live quite a distance from SLC (outside Washington DC), our

> initial evaluation was done via email and phone. So, the day

before

> casting will be our first opportunity to meet with the Shriner's

> doctor/staff and really understand the implications of life with an

> infant in a cast as well as the medical impacts.

>

> To try and best prepare ourselves, I would appreciate any advice

> anyone can offer.

>

> Things that perplex me include what do I dress her in? how do I

> handle the spit-up of a reflux baby? will her infant car seat

> work? are diapers going to be as big a challenge as I think they

> will? and things of that nature...

>

> Has anyone else had their child casted so young? If so, did it

slow

> any physical development?

>

> Thank you all for being such a wealth of knowledge and support.

>

>

> Cathleen

>