Re: Re: I need help from the experienced here...

[Guest guest]

Hi Everybody

After reading about all the responses to people cutting their kids out of their casts early because loss of correction to their spine, I began to worry a bit about Hadley. She is scheduled to be cut out of her cast at the 3 month mark. Should I be worried that she will lose correction? Is that just the normal routine and i need to tell the dr i want her cut out early, or will the dr know the best for her? Her 3 month mark is not until June 25th.

She started at a 74 degree curve and in cast was a 17 degree curve. A month after the cast was put on, she relaxed to a 25 degree curve. Is this bad? Im wondering after 2 months, what she is now?! We are not scheduled to do any more follow ups so i guess we wont know until the 3 month mark, but now im worried to wait that long. And we are so far away from the Hospital, we cant just pop in to xray and check it out.

Does anybody have any positive experiences from leaving the cast on longer than taking off earlier? Or is it just best to take it off earlier than 3 months?

We see Dr Sturm and he tries to make it 3 months. Hadley is a very happy baby and i cant detect anything going on... like sores or anything, but shes a pretty easy going baby, so i dont know....

Any reassurance or advice?

Thanks

Shauna

Subject: Re: I need help from the experienced here...To: infantile_scoliosis Date: Tuesday, June 3, 2008, 10:29 PM

Sandi,Matson is in his 5th cast. The longest he has made it in any one cast is 10 weeks. We are now on schedule to have him recasted every 8 weeks. This time around they were not able to achieve ANY correction in cast, he is back up to 30 degrees, he was 27 in cast, last cast. His orginal curve was in the 40's. Mike Pond in SLC said that at this point we are no longer trying to correct, his spine is too rigid, just trying to maintain and stop progression. Matson is 27 months old. It was very discouraging for all of us. I am hopeful at his next cast change at the end of July we will see some improvement. Matson as I have posted before, has had a hard time with each and every one of his casts. His skin breakdown is terrible, he gets the blisters on his hips you are talking about, he has bruising and some open sores.By the end he is usually vomiting or unable to drink/eat a lot due to cast

tightness. Dr. D'Astous said that some kids bodies just don't tolerate it as well as others. But we do not want to sit around and do nothing, so we are hopeful that casting will still work for him. I wish I had more advice or better insight, but it seems we are in a similar position. For the blisters on the hips, we were told to use 1% hydrocortisone cream and as for the growth spurt that Jack has experienced, Matson had one with his 3rd cast and we had to have it cut off at home due to his discomfort, he was crying non stop for 3 days. When the cast was cut off, he was really bruised, chafed, and had several open sores from pressure points we were assuming. I wish you the best. If you find out anything new, please let me know, as I am looking for similar answers. Take care!Tyler 5Matson 2Lily 1>> I need help.> > The last cast was terrible for Jack. I suspect he hit a growth spurt> early in the cast and it lifted the anchor at the hips off the pelvis,> allowing his spine to rotate and subsequently curve. But, I'm not> sure.> > My understanding of Miss Mehta's study is that the cast guides the> spine in the position it should be growing. I was told that the> longer they are in the cast, the better.> > However, it has been our experience that the longer he is in a cast,> the more correction is lost. The only ones we saw the correction hold> were the ones that were on for six weeks. Once we hit the 8-9 week> period, he rebounds back to either the starting point - or in this> case, worse.> >

Jack's spine is also being called rigid now - they are no longer able> to get him down below 28°/29°. There was talk of a brace last cast,> and we narrowly dodged that bullet and are sticking with casting as> long as possible. But, after being 36° out of cast, he went up to 38°> out of cast, and now 44° out of cast. My gut is SCREAMING "six weeks,> six weeks, six weeks." We were told to push this one out to 10 weeks> and I'm sick with worry about it.> > Does anyone have experience they can relay? Information they've> gotten or understood differently from Miss Mehta's study?> > Are we not getting true correction? thinks the casts are moving> him to the 20s, then his spine is naturally bouncing back and it's> just a matter of when we "catch" it, how much regression has been> made. We definitely know that if we stopped casting,

he'd be right> back to the 70s again. This is our only option, surgery aside, of> course.> > Also, I'd love to hear from others who have casted rigid spines and> for longer periods of time. Is there hope for a true cure still?> > I'm anxious to hear how the Birmingham moms are doing - and Max as> well (though I've heard from some of you via email) > > Sandi> > > > -- > Mom to Madison, Skylar, on, Piper, & - diagnosed with> infantile scoliosis at 10 months with a 70° right thoracic curve.> Currently undergoing serial casting.>

[Guest guest]

WHOAH!!

Where is she being casted?

That's huge!