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Anna's first cast!!!! Help!
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annettedruery
Posted 2006-01-29 5:33 AM (#18224)
Subject: Anna's first cast!!!! Help!



Regular

Posts: 65
2525
Location: northamptonshire, uk
Sorry to sound dramatic but Anna's been given her date for her first cast, admitted on 20th March for procedure on 21st. I'm not at all convinced. We've only just got out of casts for her hands, she's spent 2/3rds of her life already unable to bath etc due to casts and now we start again, only bigger. I wouldn't mind as much if we knew it was going to do some good but we've been told it's not congenital scoliosis and it's not idiopathic. We don't even know what degree she's at at the moment. It was 45 deg in August when she was 11 months old and it's got much worse than that to look at her. The rotation is also much worse as is her breathlessness. We're going to speak to the local G.P. and try and get his backing to see a neuron surgeon to get her checked. I've started a course on dealing with Autistic's this week as one of my boys is autistic so we're going through many appointments with him also. I'd appreciate any practical advice on dealing with cast after the procedure, getting her home and care etc as my minds a bit numb at the moment. As I said sorry to seem a bit dramatic over a cast I think I've just ran out of steam at the moment.

Thanks Annette.
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annettedruery
Posted 2006-01-29 5:34 AM (#18225 - in reply to #18224)
Subject: Re: Anna's first cast!!!! Help!



Regular

Posts: 65
2525
Location: northamptonshire, uk
Sorry me again, meant to say Anna's lost more weight again, any ideas to bulk her up?
Annette
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ehead
Posted 2006-01-29 12:58 PM (#18227 - in reply to #18224)
Subject: RE: Anna's first cast!!!! Help!


Hi Annette, I don't know anything about casting, as Elizabeth never had one. She was born with scoliosis and did spend some time in a brace. As to whether or not it did any good was somewhat up in the air. She had the VEPTR implanted at age 6 in Oct.'05, her curve was about 100 degrees. When she was much younger, she did have an MRI to rule out a tethered cord or possible tumor or cyst or anything of that sort causing the scoliosis. I can't imagine a doctor putting Anna in a cast without first doing x-rays to determine the degree of her curve and an MRI to rule out any neurological issues causing her scoliosis. Too, you mentioned her breathlessness, I would think a cast may somewhat contribute more to that as when Elizabeth did wear her brace, it did seem more difficult for her to "achieve" a good breath. Something her orthopaedist at the time said happened, because the brace would/did push in on her lungs when pulled as tightly as it needed to be pulled and fastened in order to hold her back properly. But, remember, I have NO experience with casting and I'm new to the VEPTR. I have been dealing with the scoliosis since Elizabeth was diagnosed at about 7 mos. of age, and it was determined to be congenital in nature. I would question Anna's doctor extensively before this casting and ask for x-rays and an MRI. Best wishes and prayers for Anna and your son who is Autistic as well. I have a close friend in N.C. who has an Autistic son who is 7 and doing very well for himself...lot's of therapy, etc. I could PM you her email address if you would like to communicate with her.
Elizabeth
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ehead
Posted 2006-01-29 1:02 PM (#18228 - in reply to #18224)
Subject: RE: Anna's first cast!!!! Help!


Oops, I forgot my 2 cents on the weight issue. Elizabeth likes vanilla Pediasure and vanilla Boost. There are many other flavors too. To me the vanilla tastes like a melted vanilla milkshake, which Elizabeth loves. The Boost makes one that has extra calories too, aside from their regular drinks. I'm not sure if Pediasure has one with extra calories. I know other people on this site have kids who drink things other than the two I have mentioned.
Elizabeth
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Maggie's Mom
Posted 2006-01-29 8:05 PM (#18231 - in reply to #18224)
Subject: Re: Anna's first cast!!!! Help!



Elite Veteran

Posts: 833
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Location: Chittenden County Vermont
I started mixing the Vanilla Boost Plus with Maggie's milk, it has 360 calories per bottle. It seems to have helped with her weight gain, she is up 1/2 pound since I started 3 weeks ago. I also mix in the chocolate with Maggies crazy cereal mix (baby cereal with formula, wheat germ, chocolate carnation breakfast powder, a scoop of formula, peanut butter mixed with the chocolate Boost). She lives on that stuff.
Susanne
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Jackie
Posted 2006-01-30 10:23 PM (#18265 - in reply to #18224)
Subject: RE: Anna's first cast!!!! Help!



Elite Veteran

Posts: 931
50010010010010025
Location: Vancouver, Canada
Hi Annette - My little girl has been in casts, 4 in total, so I could give you some advice on how to deal with casts.... But, I'm more concerned with the Ortho going for casting without looking at the whole picture!

Has Anna had an MRI? When was her last x-ray? Any chance of a second opinion?

Please send me a PM, if you want advice on casting, or if I could be of more help to you.

Jacki
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Jubi2U
Posted 2006-01-31 3:01 AM (#18280 - in reply to #18224)
Subject: RE: Anna's first cast!!!! Help!


Annette, I have nothing to add about the cast situation. BUT, I do have an Autistic son who just turned 11. We have 4 kids, 3 w/special needs and I would say hands down that Autism is the hardest of them all. He was not diagnosed until the age of 6, but I knew when he was 2 1/2 (somethings just not right when your baby can tell what type of train is approaching from 10 minutes away and he is reciting T.S. Eliot in his sleep. He knew all his colors and shapes and numbers...ALL of them. Yet, can NOT do playgroups and you could always find him if you know which Star Wars ship your looking for that day). My heart goes out to you and your family in dealing with this. If I can be of any help or support, please do not hesitate to e-mail or call (314)961-3488. I don't know how long you've been in this with him, but there are many therapies out there that DO work. They won't cure him, but some of the therapies can improve the quality of his (or your) life. My son goes to the Miriam school (it is on the net). People drive hours to and from school (more than a few are from out of state) just to go there (I can't believe dumb luck would have it that we live just 2 blocks from it). If you can find a school that includes therapies throughout the day it is worth every penny. He is one of their success stories and they think that he MAY be able to mainstream next school year (I hope so too...I don't know if I can pull another 20 thousand out of my ass X that by 4 and you become really grateful for public school!). I will say this though....they gave me my son, and that is priceless. My son also had SEVERE Sensory Integration issues. He now hugs me all the time and tells me that he loves me. He runs outside with his friends and has more than a couple of interests. He can hold a good conversation and has a deep sense of what is right and what is wrong. O.A.S.I.S. is also fabulous (on the net), also the Judivine Center can send you lots of information. Good luck to you and let me know if you need anything at all.

Peace,
Julie
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suzanne
Posted 2006-01-31 12:17 PM (#18304 - in reply to #18224)
Subject: RE: Anna's first cast!!!! Help!


Regular

Posts: 65
2525
Hi paedisure plus hase extra calories it comes in strawberry vanilla chocolate and banana. You can also get it with extra fiber in.
Casting is not a line our consultant thinks is affective and if Anna is having breathless issues then i pesonally would request a mri to look at her in more detail
Take care
Suzanne
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Cakers
Posted 2006-02-06 9:01 PM (#18522 - in reply to #18224)
Subject: Re: Anna's first cast!!!! Help!



Member

Posts: 10

Location: Kentucky
HI Annette,
My daughter has been casted two times in a body cast going from her ears to just beneath her hips. She was only 16 months when we did this and still in diapers. I have a lot of little suggestions that will make changing and keeping her dry and clean easier. I highty recommend that you discuss the goal of this casting ahead of time and demand sedation. It is a very scary process — the Doctor and a team literally will pin her and stretch her and then wrap the cast around. I found out after the fact that she could have been sedated had I seen another doctor. It makes me sick that I put her through that so please learn from my mistakes. I would also get another opinion before going ahead with the cast. I worry that the cast will make her breathlessness worse because of the pressure and weight put on her little chest. I have a ton of stuff to say on this subject. Please feel free to email me and I can share some things and answer any specifics you might have. I'd also be happy to send you a picture of Annakate in her cast. I had them cute extra holes in the front that would allow her belly room for digestion and it turns out they don't routinely do this but if you ask they will. . .

Best of luck to you. I hope I can be of some help.

Sara
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