Re: Cast life Jane & Grace

[Guest guest]

I know this waiting is hard, Jane. Prayers coming your way that her cord

is not tethered and that all testing comes back clear. Still very glad

that you found a doc to cast for congenital as this is not common and

should be for many congenital cases. Hang in there. August is around the

corner.

HRH

> I agree with the both of you.  I HATE the brace.  But, for the reasons

> we are out of cast, it was necessary and a nice break.  That said, Grace

> really hates it too.  At least once a week she breaks my heart by asking

> if she can have a new cast instead.  I gently remind her that she will

> someday soon have another cast, but for now this is what the doctor says

> will help her and I hug her a little tighter.  I hated keeping her out of

> the water, and no swimming, etc., but I will be grateful to go back to

> that life as soon as we can. 

>

> Unfortunately that might be quite a while as we are still working with the

> neurosurgeon and urology to determine what her bladder issue is stemming

> from.  Her surgeon begged me to not work towards more correction until

> we know for sure what is causing the bladder issue.  He has ordered a new

> MRI to rule-out tethered cord or a fatty filium, etc.  He said as well as

> he could see on the one from when she was 18 mo, its about 50/50 that

> that's the problem.  But, he couldn't say 100%.  He also wants to see

> what the urodynamic test shows (scheduled for 8/25).  IF she has a

> tethered cord, trying to correct her more at this point could cause

> significant and permanent damage.  However, he said that based on her

> curves before surgery and prior to casting, he may not have been able to

> tell she was tethered until she had at least the amount of correction she

> is currently at.  So, all things happen for a reason and at the time

> they are suppose to.

>

> Sorry, I have a habit of turning my responses into my own info.  Hope no

> one minds.

>  

> Jane

>

>

>

>

> ________________________________

> From: Tasha Fontenot <ryanswalk@...>

> infantile scoliosis treatment

> Sent: Thu, July 1, 2010 1:59:43 PM

> Subject: Re: Cast life

>

>  

> Major WOW!  You said it Heidi......cast life is SO much easier than

> brace life. 

> And  was the same way in his series of 6 cast over 14 months......

> perfectly HAPPY!  Nothing held him back and he never complained about the

> cast. 

> Fast forward to 2010 and we are dealing with a brace and have been

> since Sept. 2007.  I hate that darn brace some days.  And so does

> . 

> I do love our time of being out of it though so I am not sure which is

> better.  There was talk at his last appt. about possible surgery

> if his curve continues to regress as it has been.   I do not want to

> start down that road yet and would, without a doubt, go back to

> casting!  And going back into a cast was also discussed as well.

> Only time will tell what will happen.  For now our journey is far from

> over and we just keep walking down this road.

>

> Great post BTW.  And happy to hear Bexon is enjoying life! 

>  Tasha

> Mommy of 5 year old twin boys- and

> Fort Worth, Texas

> is treated at Texas ish Rite Hospital in Dallas, Texas

> Series of 6 casts for 14 months followed by bracing since September 2007

> You can read 's story at.... http://www.infantil escoliosis.

> org/stories. html

>

>

>

>

>

>

>

>

> ________________________________

> From: NIck Guthe <nickguthe (DOT) com>

> infantile scoliosis treatment @groups. com

> Sent: Thu, July 1, 2010 3:40:58 PM

> Subject: [infantile_scoliosi s] Cast life

>

>  

> As we are on over 16 and a half months of casting and cast #7, I was just

> thinking today about how easy and happy cast life is for our son. He just

> turned 3, and he could not be a more joy filled kid. We've gone to 2 big

> zoos and Disneyland in the last week for his birthday, and the cast is so

> easy for us now, outside of the occasional extra worry about getting too

> wet or getting debris down inside it. Our kiddo is the type who likes to

> throw dirt or leaves directly up in the air, on top of his head! ; )

>

> Our doctor asked us if we'd like to have a brace break this summer, and

> I often think that I'm not sure if I ever want to transition to a

> brace- I guess my gut instinct will kick in when the time is right. At

> least we know the cast is holding and possibly even eventually curing him,

> the idea of switching to a brace scares me if he is not at an extremely

> low number- ideally, under 10 degrees. I had no idea until reading it

> here this week that there can only be 6 or 7 lengthenings of the growing

> rods, and that would be about 2 a year, as I understand it. If we had

> begun that at age 2 or 3...how could that work? Final fusion at age 5? I'd

> rather cast until he's 10, if those are our options. Praying for better

> breakthroughs in the immediate future.

>

> My husband did not have his final growth spurt until age 16. He then grew

> another inch in college. I know that cast sores are terribly serious and

> we are VERY grateful we haven't had to face that up to this point, I also

> know each child is unique and that no doctor has every answer at this

> time. I just wanted to let the newer families know that as you get down

> the road, and if you have a slightly older child in casts, you really do

> get used to it, and they are in no pain at all. They can live a very fun,

> full life, even in summer. Our son has never once complained about his

> casts- and he complains about other things, believe me! I feel certain

> that he would know a brace came off, and that would be harder for us at

> this age.

>

> I don't know what the next cast change or 2 will bring, but this

> Mehta/EDF casting still feels like a miracle to me. Sometimes I wish we

> were done and this will be our last cast, there are just NO easy

> solutions to this serious medical condition, but I am reminded by the

> brave sharing of everyone's stories how lucky we are.

>  Heidi, Bexon's Mommy, (3 years old, in 7th cast from Salt Lake City

> Shriners, currently down from 62 degrees to 19.7 in cast)

>

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