question

[Guest guest]

Notice on the map (if you are getting individual messages, it should appear with the e-mail) that posterior eyes closed alpha is strong at O1 (more than O2) and at P4 (more than P3). Except for the occipitals, alpha should be stronger on the right.

Pete-- Van Deusenpvdtlc@...http://www.brain-trainer.com305/433-3160The Learning Curve, Inc.

[Guest guest]

Notice on the map (if you are getting individual messages, it should appear with the e-mail) that posterior eyes closed alpha is strong at O1 (more than O2) and at P4 (more than P3). Except for the occipitals, alpha should be stronger on the right.

Pete-- Van Deusenpvdtlc@...http://www.brain-trainer.com305/433-3160The Learning Curve, Inc.

[Guest guest]

I hate the state I live in LOL but I guess I am lucky-the county I live in automatically accepts any child with any kind of disability at the school Jon goes in.I mean there's no tuition or anything!!!Jen

-- Question

I want placed in an Autism school and that is that. And I dont know what to do if they wont do it. I can get a lawyer and all, but I dont want to go that round till I try this first... I wonder what happens if I dont sign the IEP. Does anyone have any insight that they can help me on this question? And if anyone is into doing research and you come across anything for IL, please let me know. Thanks. Stacie

Need a job? Find employment help in your area.

[Guest guest]

Hi Frazz,

What part of CA are you in? I'm on the central coast - we're rainy today : (

Anyway, if your employers are using an agency to pay they are probably already

well connected. The first place is the local Regional Center. Go to dds.ca.gov

for the ca dept of developmental services to find which regional center your

family belongs to. Also Easter Seals is an excellent resource. They have some

in home programs for autism and may be able to connect you with a support group.

I know of some other resources in my area. Can email you more if you are close.

Deanna

>

> does anyone know what services are offered in California? Im sure my employers

know of some (I think they are using an agency to pay me) but I was wondering if

anyone has a list that I can pass onto them.

>

> thanks in advance and again, God bless you guys.

> Frazz

>

[Guest guest]

Frazz

Sounds like you are doing wonderful. You might want to talk in 3rd person to the children - example would be I want juice instead of do you want juice. Give them the words and then say Yes I would like some juice.

We had to do this with my son until it became echolalic (sp) where he repeated every word we said, but by saying it in the way that he should say it you get him to use the correct speech without him even knowing it.

The other stuff I can't help too much, I have blocked a lot of that from my memory.

Old lady here

Sharon

Subject: questionTo: AutismBehaviorProblems Date: Friday, April 24, 2009, 12:40 PM

Just tryin to find out what everyone does when their child hits or picnhes, scratches, bites you when you want them to do something that they dont want to do?Just a reminder again(until everyone gets to know me well) is that I take care of a 4 and 5 year old with Autism.My natural response would be to say (to the little girl, at least......im a bit afraid of the boy yet) "please dont hit, scratch (etc) hitting is not allowed. hitting hurts me" and hold their hands down at their sides. (I also got some of this from a wonderful lady in this group...but some i just do naturally). Are there any other things that one can say?And what about non verbal. ? I talk to her all the time and sometimes she repeats me. Shoudl I keep doing that? Like if I give her juice do I tell her "Emmi say thank you"? Or if we are jumping say "jump jump"? I also try to get her to look at me and then i say words. Yesterday she had more eye contact with me

than last week even!...anyway, Do I kinda treat her like I would a child thats younger whos just learning to talk, etc? sorry, i dont ever mean to offend anyone with my questions.thanksFrazz

[Guest guest]

I am the grandmother of a 16 year old autistic grandson. I have been responsible for his ABA program since he was three. I tell him what to do, i.e. "hands quiet".

We taught him "hands quiet" when he was three. I also gave him play doh to pinch on. For biting we had tubing for him to bite on. ". When she looks at you

say, "good looking" or "I like it when you look at me". With Karac when I handed him something I would say, "thank you". Short sentences are good.

It sounds like you are doing a very good job. blessings, Pat K

question

Just tryin to find out what everyone does when their child hits or picnhes, scratches, bites you when you want them to do something that they dont want to do?

Just a reminder again(until everyone gets to know me well) is that I take care of a 4 and 5 year old with Autism.

My natural response would be to say (to the little girl, at least......im a bit afraid of the boy yet) "please dont hit, scratch (etc) hitting is not allowed. hitting hurts me" and hold their hands down at their sides. (I also got some of this from a wonderful lady in this group...but some i just do naturally). Are there any other things that one can say?

And what about non verbal. ? I talk to her all the time and sometimes she repeats me. Shoudl I keep doing that? Like if I give her juice do I tell her "Emmi say thank you"? Or if we are jumping say "jump jump"? I also try to get her to look at me and then i say words. Yesterday she had more eye contact with me than last week even!...anyway, Do I kinda treat her like I would a child thats younger whos just learning to talk, etc? sorry, i dont ever mean to offend anyone with my questions.

thanks

Frazz

A Good Credit Score is 700 or Above. See yours in just 2 easy steps!

[Guest guest]

If I see if coming I block it...taking his hands, and modeling appropriate language. For instance, he goes to hit, I see it, I take his arms in my hands (gently) and say with a calm voice, "I'm mad mommy." --- I let go, if he does it again, I repeat...he will usually stop once we begin to reason....

If I don't see if coming, I DO NOT RESPOND TO IT. I walk away, knowing that it is coming, and when I turn I can block and do the above....

e

Frazz you're an angel.

To: AutismBehaviorProblems Sent: Friday, April 24, 2009 12:40:16 PMSubject: question

Just tryin to find out what everyone does when their child hits or picnhes, scratches, bites you when you want them to do something that they dont want to do?Just a reminder again(until everyone gets to know me well) is that I take care of a 4 and 5 year old with Autism.My natural response would be to say (to the little girl, at least......im a bit afraid of the boy yet) "please dont hit, scratch (etc) hitting is not allowed. hitting hurts me" and hold their hands down at their sides. (I also got some of this from a wonderful lady in this group...but some i just do naturally). Are there any other things that one can say?And what about non verbal. ? I talk to her all the time and sometimes she repeats me. Shoudl I keep doing that? Like if I give her juice do I tell her "Emmi say thank you"? Or if we are jumping say "jump jump"? I also try to get her to look at me and then i say words. Yesterday she had more eye contact with me

than last week even!...anyway, Do I kinda treat her like I would a child thats younger whos just learning to talk, etc? sorry, i dont ever mean to offend anyone with my questions.thanksFrazz

[Guest guest]

good, good, and good, LOL

To: AutismBehaviorProblems Sent: Friday, April 24, 2009 5:20:02 PMSubject: Re: question

I am the grandmother of a 16 year old autistic grandson. I have been responsible for his ABA program since he was three. I tell him what to do, i.e. "hands quiet".We taught him "hands quiet" when he was three. I also gave him play doh to pinch on. For biting we had tubing for him to bite on. ". When she looks at you say, "good looking" or "I like it when you look at me". With Karac when I handed him something I would say, "thank you". Short sentences are good.It sounds like you are doing a very good job. blessings, Pat K question

Just tryin to find out what everyone does when their child hits or picnhes, scratches, bites you when you want them to do something that they dont want to do?Just a reminder again(until everyone gets to know me well) is that I take care of a 4 and 5 year old with Autism.My natural response would be to say (to the little girl, at least......im a bit afraid of the boy yet) "please dont hit, scratch (etc) hitting is not allowed. hitting hurts me" and hold their hands down at their sides. (I also got some of this from a wonderful lady in this group...but some i just do naturally). Are there any other things that one can say?And what about non verbal. ? I talk to her all the time and sometimes she repeats me. Shoudl I keep doing that? Like if I give her juice do I tell her "Emmi say thank you"? Or if we are jumping say "jump jump"? I also try to get her to look at me and then i say words. Yesterday she had more eye contact with me

than last week even!...anyway, Do I kinda treat her like I would a child thats younger whos just learning to talk, etc? sorry, i dont ever mean to offend anyone with my questions.thanksFrazz

A Good Credit Score is 700 or Above. See yours in just 2 easy steps!

[Guest guest]

Ok, so I over work the word good. LOL, LOL, LOL. Pat K

question

Just tryin to find out what everyone does when their child hits or picnhes, scratches, bites you when you want them to do something that they dont want to do?

Just a reminder again(until everyone gets to know me well) is that I take care of a 4 and 5 year old with Autism.

My natural response would be to say (to the little girl, at least......im a bit afraid of the boy yet) "please dont hit, scratch (etc) hitting is not allowed. hitting hurts me" and hold their hands down at their sides. (I also got some of this from a wonderful lady in this group...but some i just do naturally). Are there any other things that one can say?

And what about non verbal. ? I talk to her all the time and sometimes she repeats me. Shoudl I keep doing that? Like if I give her juice do I tell her "Emmi say thank you"? Or if we are jumping say "jump jump"? I also try to get her to look at me and then i say words. Yesterday she had more eye contact with me than last week even!...anyway, Do I kinda treat her like I would a child thats younger whos just learning to talk, etc? sorry, i dont ever mean to offend anyone with my questions.

thanks

Frazz

A Good Credit Score is 700 or Above. See yours in just 2 easy steps!

A Good Credit Score is 700 or Above. See yours in just 2 easy steps!

[Guest guest]

No you goofball... i was saying good on every single point you give...if you were my therapist you'd never get a word in edge wise, cause I'd be telling you how good your ideas are.... LOL, LOL

J

To: AutismBehaviorProblems Sent: Friday, April 24, 2009 10:29:43 PMSubject: Re: question

Ok, so I over work the word good. LOL, LOL, LOL. Pat K question

Just tryin to find out what everyone does when their child hits or picnhes, scratches, bites you when you want them to do something that they dont want to do?Just a reminder again(until everyone gets to know me well) is that I take care of a 4 and 5 year old with Autism.My natural response would be to say (to the little girl, at least......im a bit afraid of the boy yet) "please dont hit, scratch (etc) hitting is not allowed. hitting hurts me" and hold their hands down at their sides. (I also got some of this from a wonderful lady in this group...but some i just do naturally). Are there any other things that one can say?And what about non verbal. ? I talk to her all the time and sometimes she repeats me. Shoudl I keep doing that? Like if I give her juice do I tell her "Emmi say thank you"? Or if we are jumping say "jump jump"? I also try to get her to look at me and then i say words. Yesterday she had more eye contact with me

than last week even!...anyway, Do I kinda treat her like I would a child thats younger whos just learning to talk, etc? sorry, i dont ever mean to offend anyone with my questions.thanksFrazz

A Good Credit Score is 700 or Above. See yours in just 2 easy steps!

A Good Credit Score is 700 or Above. See yours in just 2 easy steps!

[Guest guest]

Maybe I'm getting "loopy". and I went to Julio's tonight and I had a swirl.

It was so good after my not so good day. Have you ever been to Julio"s? I

really like their ensaladas. Have a good night and better tomorrow. Love and blessings, Pat K

question

Just tryin to find out what everyone does when their child hits or picnhes, scratches, bites you when you want them to do something that they dont want to do?

Just a reminder again(until everyone gets to know me well) is that I take care of a 4 and 5 year old with Autism.

My natural response would be to say (to the little girl, at least......im a bit afraid of the boy yet) "please dont hit, scratch (etc) hitting is not allowed. hitting hurts me" and hold their hands down at their sides. (I also got some of this from a wonderful lady in this group...but some i just do naturally). Are there any other things that one can say?

And what about non verbal. ? I talk to her all the time and sometimes she repeats me. Shoudl I keep doing that? Like if I give her juice do I tell her "Emmi say thank you"? Or if we are jumping say "jump jump"? I also try to get her to look at me and then i say words. Yesterday she had more eye contact with me than last week even!...anyway, Do I kinda treat her like I would a child thats younger whos just learning to talk, etc? sorry, i dont ever mean to offend anyone with my questions.

thanks

Frazz

A Good Credit Score is 700 or Above. See yours in just 2 easy steps!

A Good Credit Score is 700 or Above. See yours in just 2 easy steps!

A Good Credit Score is 700 or Above. See yours in just 2 easy steps!

[Guest guest]

Thanks for this idea. We have started not responding to some things and it seems to help if there is no attention.

has words and is starting to say sentences.."I want to eat.:" I want ____." "I love to eat.""I don't want to." but she can't express feelings.

Neat idea to help her identify.

Off to try it. Won't have to wait long for an oppurtunity.LOL!

Elaine

question

Just tryin to find out what everyone does when their child hits or picnhes, scratches, bites you when you want them to do something that they dont want to do?Just a reminder again(until everyone gets to know me well) is that I take care of a 4 and 5 year old with Autism.My natural response would be to say (to the little girl, at least......im a bit afraid of the boy yet) "please dont hit, scratch (etc) hitting is not allowed. hitting hurts me" and hold their hands down at their sides. (I also got some of this from a wonderful lady in this group...but some i just do naturally). Are there any other things that one can say?And what about non verbal. ? I talk to her all the time and sometimes she repeats me. Shoudl I keep doing that? Like if I give her juice do I tell her "Emmi say thank you"? Or if we are jumping say "jump jump"? I also try to get her to look at me and then i say words. Yesterday she had more eye contact with me than last week even!...anyway, Do I kinda treat her like I would a child thats younger whos just learning to talk, etc? sorry, i dont ever mean to offend anyone with my questions.thanksFrazz

[Guest guest]

Elaine I know to others I must sound like a psycho -- LOL --- at the store I'm constantly talking for him, or modeling, "Oh, mommy yuck" (that instead of his normal screaming LOL) --- or "I'm hungry" -- people are probably looking at me as if I have two heads...We usually do it when he tantrums....panics, or is afraid...or when he hits his sister cause she won't play with him...or screams when I walk down the hall....."Lily I want to play" --- "mommy wait" --- I'm freaking tired of talking. LOL, LOL, LOL not really, well sort of.

It works.

e

To: AutismBehaviorProblems Sent: Saturday, April 25, 2009 6:09:32 AMSubject: Re: question

Thanks for this idea. We have started not responding to some things and it seems to help if there is no attention.

has words and is starting to say sentences.." I want to eat.:" I want ____." "I love to eat.""I don't want to." but she can't express feelings.

Neat idea to help her identify.

Off to try it. Won't have to wait long for an oppurtunity. LOL!

Elaine

question

Just tryin to find out what everyone does when their child hits or picnhes, scratches, bites you when you want them to do something that they dont want to do?Just a reminder again(until everyone gets to know me well) is that I take care of a 4 and 5 year old with Autism.My natural response would be to say (to the little girl, at least......im a bit afraid of the boy yet) "please dont hit, scratch (etc) hitting is not allowed. hitting hurts me" and hold their hands down at their sides. (I also got some of this from a wonderful lady in this group...but some i just do naturally). Are there any other things that one can say?And what about non verbal. ? I talk to her all the time and sometimes she repeats me. Shoudl I keep doing that? Like if I give her juice do I tell her "Emmi say thank you"? Or if we are jumping say "jump jump"? I also try to get her to look at me and then i say words. Yesterday she had more eye contact with me

than last week even!...anyway, Do I kinda treat her like I would a child thats younger whos just learning to talk, etc? sorry, i dont ever mean to offend anyone with my questions.thanksFrazz

[Guest guest]

I know I asked this before, but is Spinal Fusion a one time surgery and then the child is straight after that and doesn't need further casting, bracing, surgery, etc????

Also, Hayden spilled a little yogurt drink on his cast, I cleaned it up but I hope it was ok to get it a little wet. It wasn't much. SHould I blowdry the shirt and cast?? Joanmom to Hayden 2 1/233 degrees1st cast down from 62 degrees Treated at ish Rite Hospital Dallas, TX

[Guest guest]

Thanks Jane. The reason I ask is because our Dr told us that Hayden may need it down the line (like when he is 8 or 9). Joanmom to Hayden 2 1/233 degrees1st cast down from 62 degrees Treated at ish Rite Hospital Dallas, TX

To: infantile_scoliosis Sent: Saturday, September 26, 2009 1:53:22 PMSubject: Re: question

While Grace didn't have a "big" fusion, she did have T8 and T9 fused during this last surgery and her compensatory curves are still present so no, fusion isn't always the "one big fix".

Jane

From: Gail <patsmum2000@ yahoo.com>To: infantile_scoliosis @yahoogroups. comSent: Saturday, September 26, 2009 10:19:03 AMSubject: Re: [infantile_scoliosi s] question

Hi Joan,

there is no guarantee that a child who has a fusion would not need further intervention down the road. A fusion is also not guaranteed, as with any scolosis treatment, to make a child 100% straight. What a fusion will do is stop that segment of the spine from growing any more. So if a child has a fusion at a very young age, that is as long as that section of their spine is going to be.

Complications down the road could include back pain, a compesentary (I know I butchered the spelling) curve, a shortened torso, etc.

Gail

"The Earth is the insane asylum for the rest of universe"

“Normal is just a setting on the washing machine.†-BumperSnickerz. ************ ********* ********* ********* ********* ********* ********* **Mom to , 11/28/98 - ADHD/ODD/SIDand , 02/02/02 - Congenital Scoliosis, VATER Association (vertebral and renal anomalies), Torticollis, Klippel Feil Syndrome, Fused Ribs, First VEPTR Recipient at Cincinnati Children's Hospital 3/21/05, VEPTR Expansions: 11/05, 04/20/06, 6/12/08 and 8/14/09; Mole (Spitz Nevus) removal: 11/26/07 & 2/11/08

From: Joan Vallee <hayro1611yahoo (DOT) com>Subject: [infantile_scoliosi s] questionTo: infantile_scoliosis @yahoogroups. comDate: Saturday, September 26, 2009, 12:28 PM

I know I asked this before, but is Spinal Fusion a one time surgery and then the child is straight after that and doesn't need further casting, bracing, surgery, etc????

Also, Hayden spilled a little yogurt drink on his cast, I cleaned it up but I hope it was ok to get it a little wet. It wasn't much. SHould I blowdry the shirt and cast?? Joanmom to Hayden 2 1/233 degrees1st cast down from 62 degrees Treated at ish Rite Hospital Dallas, TX

[Guest guest]

Joan,

If you get extra moleskin, you can peel off the dingy parts and put fresh on, or just put fresh pieces over the dingy spots! It looks cleaner that way. Sometimes we just roll with it, we're less than a week from the next cast!Heidi, Bexon's Mama, (2 years old, in 3rd cast from Salt Lake City Shriners, currently down from 61 degrees to 25)

From: genericallyloud <jennifer.leggett@ gmail.com>Subject: [infantile_scoliosi s] Re: questionTo: infantile_scoliosis @yahoogroups. . comDate: Saturday, September 26, 2009, 2:40 PM

I use a lot of bibs, just wearing shirts really help it from going down the cast (I just change them frequently), also sense there is the cut out in the front I find it very easy to reach down there with a paper towel or burp cloth and dry it off. Also that area receives a lot of air and dries pretty well on its own.JennMommy to Cole, 20 months, 2nd cast from Rochester, 23 degrees down form 47, possible chiari malformation> > > > > > From: Joan Vallee <hayro1611yahoo (DOT)

com>> > Subject: [infantile_scoliosi s] question> > To: infantile_scoliosis @yahoogroups. com> > Date: Saturday, September 26, 2009, 12:28 PM> > > > > > > > > > > > > > > > I know I asked this before, but is Spinal Fusion a one time surgery and then the child is straight after that and doesn't need further casting, bracing, surgery, etc????> > > > Also, Hayden spilled a little yogurt drink on his cast, I cleaned it up but I hope it was ok to get it a little wet. It wasn't much. SHould I blowdry the shirt and cast??> > Joan> > mom to Hayden 2 1/2> > 33 degrees> > 1st cast down from 62 degrees > > Treated at ish Rite Hospital > > Dallas, TX>

>>____________ _________ _________ _________ _________ __

[Guest guest]

OH, so I CAN peel off the old one??? I did not know that. Thank you so much. I am going to do that tomorrow. Thank GOD for this group. Joanmom to Hayden 2 1/233 degrees1st cast down from 62 degrees Treated at ish Rite Hospital Dallas, TX

To: infantile_scoliosis Sent: Saturday, September 26, 2009 9:23:47 PMSubject: Re: Re: question

Joan,

If you get extra moleskin, you can peel off the dingy parts and put fresh on, or just put fresh pieces over the dingy spots! It looks cleaner that way. Sometimes we just roll with it, we're less than a week from the next cast!Heidi, Bexon's Mama, (2 years old, in 3rd cast from Salt Lake City Shriners, currently down from 61 degrees to 25)

From: genericallyloud <jennifer..leggett@ gmail.com>Subject: [infantile_scoliosi s] Re: questionTo: infantile_scoliosis @yahoogroups. . comDate: Saturday, September 26, 2009, 2:40 PM

I use a lot of bibs, just wearing shirts really help it from going down the cast (I just change them frequently), also sense there is the cut out in the front I find it very easy to reach down there with a paper towel or burp cloth and dry it off. Also that area receives a lot of air and dries pretty well on its own.JennMommy to Cole, 20 months, 2nd cast from Rochester, 23 degrees down form 47, possible chiari malformation> > > > > > From: Joan Vallee <hayro1611yahoo (DOT)

com>> > Subject: [infantile_scoliosi s] question> > To: infantile_scoliosis @yahoogroups. com> > Date: Saturday, September 26, 2009, 12:28 PM> > > > > > > > > > > > > > > > I know I asked this before, but is Spinal Fusion a one time surgery and then the child is straight after that and doesn't need further casting, bracing, surgery, etc????> > > > Also, Hayden spilled a little yogurt drink on his cast, I cleaned it up but I hope it was ok to get it a little wet. It wasn't much. SHould I blowdry the shirt and cast??> > Joan> > mom to Hayden 2 1/2> > 33 degrees> > 1st cast down from 62 degrees > > Treated at ish Rite Hospital > > Dallas, TX>

>>____________ _________ _________ _________ _________ __

[Guest guest]

Let me rephrase.... Thank HEATHER for this group Joanmom to Hayden 2 1/233 degrees1st cast down from 62 degrees Treated at ish Rite Hospital Dallas, TX

To: infantile_scoliosis Sent: Saturday, September 26, 2009 9:23:47 PMSubject: Re: Re: question

Joan,

If you get extra moleskin, you can peel off the dingy parts and put fresh on, or just put fresh pieces over the dingy spots! It looks cleaner that way. Sometimes we just roll with it, we're less than a week from the next cast!Heidi, Bexon's Mama, (2 years old, in 3rd cast from Salt Lake City Shriners, currently down from 61 degrees to 25)

From: genericallyloud <jennifer.leggett@ gmail.com>Subject: [infantile_scoliosi s] Re: questionTo: infantile_scoliosis @yahoogroups. . comDate: Saturday, September 26, 2009, 2:40 PM

I use a lot of bibs, just wearing shirts really help it from going down the cast (I just change them frequently), also sense there is the cut out in the front I find it very easy to reach down there with a paper towel or burp cloth and dry it off. Also that area receives a lot of air and dries pretty well on its own.JennMommy to Cole, 20 months, 2nd cast from Rochester, 23 degrees down form 47, possible chiari malformation> > > > > > From: Joan Vallee <hayro1611yahoo (DOT)

com>> > Subject: [infantile_scoliosi s] question> > To: infantile_scoliosis @yahoogroups. com> > Date: Saturday, September 26, 2009, 12:28 PM> > > > > > > > > > > > > > > > I know I asked this before, but is Spinal Fusion a one time surgery and then the child is straight after that and doesn't need further casting, bracing, surgery, etc????> > > > Also, Hayden spilled a little yogurt drink on his cast, I cleaned it up but I hope it was ok to get it a little wet. It wasn't much. SHould I blowdry the shirt and cast??> > Joan> > mom to Hayden 2 1/2> > 33 degrees> > 1st cast down from 62 degrees > > Treated at ish Rite Hospital > > Dallas, TX>

>>____________ _________ _________ _________ _________ __

[Guest guest]

Thank God and !!! I believe God had a very special purpose for an Earth Angel like Heath...one in much more than a million.Heidi, Bexon's Mama, (2 years old, in 3rd cast from Salt Lake City Shriners, currently down from 61 degrees to 25)

From: genericallyloud <jennifer.leggett@ gmail.com>Subject: [infantile_scoliosi s] Re: questionTo: infantile_scoliosis @yahoogroups. . comDate: Saturday, September 26, 2009, 2:40 PM

I use a lot of bibs, just wearing shirts really help it from going down the cast (I just change them frequently), also sense there is the cut out in the front I find it very easy to reach down there with a paper towel or burp cloth and dry it off. Also that area receives a lot of air and dries pretty well on its own.JennMommy to Cole, 20 months, 2nd cast from Rochester, 23 degrees down form 47, possible chiari malformation> > > > > > From: Joan Vallee <hayro1611yahoo (DOT)

com>> > Subject: [infantile_scoliosi s] question> > To: infantile_scoliosis @yahoogroups. com> > Date: Saturday, September 26, 2009, 12:28 PM> > > > > > > > > > > > > > > > I know I asked this before, but is Spinal Fusion a one time surgery and then the child is straight after that and doesn't need further casting, bracing, surgery, etc????> > > > Also, Hayden spilled a little yogurt drink on his cast, I cleaned it up but I hope it was ok to get it a little wet. It wasn't much. SHould I blowdry the shirt and cast??> > Joan> > mom to Hayden 2 1/2> > 33 degrees> > 1st cast down from 62 degrees > > Treated at ish Rite Hospital > > Dallas, TX>

>>____________ _________ _________ _________ _________ __

[Guest guest]

Grace hasn't worn bibs in a long time either, but I'm going to have a friend of mine make some out of hand towels but cutting a hole near one end, lining it with ribbing (like the neck of a t-shirt) and then attaching it to a vinyl of some sort to make it water proof, yet absorbent. Grace likes to eat independently, but she isn't very clean about it and I'm always cleaning her brace, won't be able to do that with a cast.I may even try to customize them with princesses or tinkerbell, etc. I'll try to post pics when we get them made. JaneTo: infantile_scoliosis Sent: Saturday, September 26, 2009 7:10:38 PMSubject: Re: Re: question

Hayden is so warm natured anyway, so he wears a pj bottom only, but its still warm out. So I am sure by Nov/ Dec he will be wearing much more. The only thing is the cast is already looking kind of dingy. I don't want a dirty, dingy looking kid, but I can only do so much especially after the yogurt drink spillage. I will clean it all the best I can. As for bibs, he is older and hasn't worn one in a long time, so I won't be trying bibs. Hopefully he can wear a tshirt more often soon. He just seems so warm. Joanmom to Hayden 2 1/233 degrees1st cast down from 62 degrees Treated at ish Rite Hospital Dallas, TX

From: Tasha Fontenot <ryanswalkyahoo (DOT) com>To: infantile_scoliosis @yahoogroups. comSent: Saturday, September 26, 2009 4:22:56 PMSubject: Re: [infantile_scoliosi s] Re: question

That just goes to show you how different kids are and how they respond..... ... always had a shirt on and sometimes a bib. And for bed he wore shirt and pj shorts. And was covered and tucked. Just sounds HOT to me.TashaMommy of 4 year old twin boys- and Fort Worth, TexasSeries of 6 casts for 14 months and now in a night brace. is treated at Texas ish Rite Hospital.You can read 's story at....http://www.infantil escoliosis. org/stories. html

From: genericallyloud <jennifer.leggett@ gmail.com>Subject: [infantile_scoliosi s] Re: questionTo: infantile_scoliosis @yahoogroups. . comDate: Saturday, September 26, 2009, 2:40 PM

I use a lot of bibs, just wearing shirts really help it from going down the cast (I just change them frequently), also sense there is the cut out in the front I find it very easy to reach down there with a paper towel or burp cloth and dry it off. Also that area receives a lot of air and dries pretty well on its own.JennMommy to Cole, 20 months, 2nd cast from Rochester, 23 degrees down form 47, possible chiari malformation> > > > > > From: Joan Vallee <hayro1611yahoo (DOT)

com>> > Subject: [infantile_scoliosi s] question> > To: infantile_scoliosis @yahoogroups. com> > Date: Saturday, September 26, 2009, 12:28 PM> > > > > > > > > > > > > > > > I know I asked this before, but is Spinal Fusion a one time surgery and then the child is straight after that and doesn't need further casting, bracing, surgery, etc????> > > > Also, Hayden spilled a little yogurt drink on his cast, I cleaned it up but I hope it was ok to get it a little wet. It wasn't much. SHould I blowdry the shirt and cast??> > Joan> > mom to Hayden 2 1/2> > 33 degrees> > 1st cast down from 62 degrees > > Treated at ish Rite Hospital > > Dallas, TX>

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[Guest guest]

has the VEPTR rods. They are adjustable and are not anywhere near her spine. They are anchored on her ribs and hip bones. What most people call growing rods are usually anchored to the spine in some way.

Even with the VEPTRs, will never be totally straight. However, she will be as straight as we can possibly get her. Will she need a fusion at some point? Possibly. But we will cross that bridge when we get to it. Right now we are getting her as tall and as straight as we can without doing anything directly to her spine.

Gail

"The Earth is the insane asylum for the rest of universe"

“Normal is just a setting on the washing machine.†-BumperSnickerz. ********************************************************************Mom to , 11/28/98 - ADHD/ODD/SIDand , 02/02/02 - Congenital Scoliosis, VATER Association (vertebral and renal anomalies), Torticollis, Klippel Feil Syndrome, Fused Ribs, First VEPTR Recipient at Cincinnati Children's Hospital 3/21/05, VEPTR Expansions: 11/05, 04/20/06, 6/12/08 and 8/14/09; Mole (Spitz Nevus) removal: 11/26/07 & 2/11/08

From: Joan Vallee <hayro1611yahoo (DOT) com>Subject: [infantile_scoliosi s] questionTo: infantile_scoliosis @yahoogroups. comDate: Saturday, September 26, 2009, 12:28 PM

I know I asked this before, but is Spinal Fusion a one time surgery and then the child is straight after that and doesn't need further casting, bracing, surgery, etc????

Also, Hayden spilled a little yogurt drink on his cast, I cleaned it up but I hope it was ok to get it a little wet. It wasn't much. SHould I blowdry the shirt and cast?? Joanmom to Hayden 2 1/233 degrees1st cast down from 62 degrees Treated at ish Rite Hospital Dallas, TX

[Guest guest]

Hi Joan,I know I'm a little late on this conversation, but wanted to add my .02. Gail has given you good information on fusion and VEPTR surgeries, etc. My Braydon is now 14yrs old. He had anterior/posterior fusion (T5-L1) when he was 11 months old. Because of the fusion, his torso is much shorter than it should be. It is at least 6 inches shorter in height. When he was 6yrs old he had VEPTR surgery to expand his chest and stabilize his spine. His lung function is only 40% of normal. However, his body compensates extremely well. He has never had pneumonia, isn't on oxygen (oxygen sats are always 96-97%) and he is an active teenager. Cosmetically, as he has gotten older, he looks a little different because his arms and legs are so long (typical teenage length) but his body/torso is so

short. He will never get that lung function back. We pray daily that his body continues to compensate for the reduced lung function, and that his lungs stay healthy for a long and happy and active life.My point - PLEASE avoid fusion surgery in a small child, if at all possible. There are some cases where fusion is the right answer, but for most very small children, the newer technologies (ie, VEPTR, growing rods, SCHILA rods, vertebral stapling, etc.) allow the child to grow and postpone fusion. You can not UNDO a fusion surgery. Once the spine is fused, it is done. There are risks of pseudoarthrosis (failed fusion) like Shellie's Moriah had. Her spine was relentless and continued to curve even with fusion surgery at a young age. Some kids have this problem. Braydon's spine fused very well. Too well, in fact. His spine in the fused area T5-L1 is rigid and fixed at 65 degree

curve.The VEPTR surgery helped stabilize the spine above and below the fused area. His hips and shoulders are even. His right lung improved in size and function (at the time of the VEPTR surger), etc. He is a healthy, active teenager today because technology improved in just the few years since he was an infant.If your docs are suggesting fusion surgery at age 8-10, that's better than now, but it isn't good enough, IMHO. This is was before pre-adolescent and pubescent growth occurs. The risks of failure when fusing an immature spine are increased, a lot. Please ask lots of questions before agreeing to any type of back surgery. It is very invasive and often irreversible. Surgeries like VEPTR can be reversed because there is no, or very little, trauma to the spine itself. We didn't know if the VEPTR surgery would help Braydon or not. We decided if it didn't work, we could resort

back to the traditional fusion - more fusion - if needed. Fortunately, VEPTR has been a miracle for Braydon.Sorry to ramble. Please know there are many here who care.CarmellMom to Kara, idiopathic scoliosis and hypothyroidism, Blake 18, GERD, and Braydon 14, VACTERL-congenital scoliosis (fusion surgery 5/96), VEPTR patient #137 (implant 8/01), Thoracic Insufficiency Syndrome (TIS), rib anomalies, missing coccyx, fatty filum/TC (released 4/99 & 12/06), anal stenosis, chronic constipation, horseshoe (cross-fused) kidney, dbl ureter in left kidney, ureterocele (excized 6/95), kidney reflux (reimplant surgery 1/97), neurogenic bladder, dysplastic right leg w/right clubfoot with 8 toes (repaired 2/96, 3/96, 1/97, 3/04), tibial torsion, 4cm length discrepancy-wears 3cm lift, valgus deformity, GERD, Gastroparesis, SUA, etc. http://carmellb-ivil.tripod.com/myfamily/ Congenital scoliosis support

grouphttp://health.groups.yahoo.com/group/CongenitalScoliosisSupport/

[Guest guest]

I had the exact same experience with Versed...all positive with no side effects.~Noah 4 1/2 years old9 months of casting in SLC; Currently on 2 years of bracing at 6* in braceAnd Mariella 12 months old - resolved Infantile Scoliosis

To: infantile_scoliosis From: ryanswalk@...Date: Fri, 5 Feb 2010 09:24:14 -0800Subject: Re: Question

Lynn,I am not sure what drug the nurse is referring to. For he was always(all 6 casts)given Versed. It only made him loopy and really funny To me it was like it had a nice buzz going on.....LOL.Anyway never had a problem with it. Before or after. And it did help him be more relaxed when they were taking him away. There is no way he could have made it without. Me either for that matter.Now all that being said I think I remember reading about some kids having problems with it. Hopefully those parents will chime in to help you out.Hope this helps you some.

TashaMommy of 4 year old twin boys- and Fort Worth, TexasSeries of 6 casts for 14 months and now in a night brace. is treated at Texas ish Rite Hospital.You can read 's story at....http://www.infantilescoliosis.org/stories.html

From: Lynn Marsden <lynn_marsden>To: infantile_scoliosis Sent: Fri, February 5, 2010 11:06:00 AMSubject: Question

Hi everyone

Peyton is going in for his 5th cast on Monday and he is always extrememly fussy before going in. I mean actually screaming, whining etc. but as many of you may remember he is a cryer to begin with. Anyway my question is regarding pre anesthetic drugs. The nurses always try to talk my husband and I into giving Peyton these drugs before he is put to sleep to calm him down but I have heard awful things about them. I have heard that kids sometimes have convulsions afterwards and that they are almost always sick with actual vomitting. Is this true? Does anyone have any experience with this. The nurse also said that it has an amnesia affect and it helps the child to forget the seperation when he goes in the OR.

Lynn

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[Guest guest]

I had the exact same experience with Versed...all positive with no side effects.~Noah 4 1/2 years old9 months of casting in SLC; Currently on 2 years of bracing at 6* in braceAnd Mariella 12 months old - resolved Infantile Scoliosis

To: infantile_scoliosis From: ryanswalk@...Date: Fri, 5 Feb 2010 09:24:14 -0800Subject: Re: Question

Lynn,I am not sure what drug the nurse is referring to. For he was always(all 6 casts)given Versed. It only made him loopy and really funny To me it was like it had a nice buzz going on.....LOL.Anyway never had a problem with it. Before or after. And it did help him be more relaxed when they were taking him away. There is no way he could have made it without. Me either for that matter.Now all that being said I think I remember reading about some kids having problems with it. Hopefully those parents will chime in to help you out.Hope this helps you some.

TashaMommy of 4 year old twin boys- and Fort Worth, TexasSeries of 6 casts for 14 months and now in a night brace. is treated at Texas ish Rite Hospital.You can read 's story at....http://www.infantilescoliosis.org/stories.html

From: Lynn Marsden <lynn_marsden>To: infantile_scoliosis Sent: Fri, February 5, 2010 11:06:00 AMSubject: Question

Hi everyone

Peyton is going in for his 5th cast on Monday and he is always extrememly fussy before going in. I mean actually screaming, whining etc. but as many of you may remember he is a cryer to begin with. Anyway my question is regarding pre anesthetic drugs. The nurses always try to talk my husband and I into giving Peyton these drugs before he is put to sleep to calm him down but I have heard awful things about them. I have heard that kids sometimes have convulsions afterwards and that they are almost always sick with actual vomitting. Is this true? Does anyone have any experience with this. The nurse also said that it has an amnesia affect and it helps the child to forget the seperation when he goes in the OR.

Lynn

Be smarter than spam. See how smart SpamGuard is at giving junk email the boot with the All-new Yahoo! Mail

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[Guest guest]

I had the exact same experience with Versed...all positive with no side effects.~Noah 4 1/2 years old9 months of casting in SLC; Currently on 2 years of bracing at 6* in braceAnd Mariella 12 months old - resolved Infantile Scoliosis

To: infantile_scoliosis From: ryanswalk@...Date: Fri, 5 Feb 2010 09:24:14 -0800Subject: Re: Question

Lynn,I am not sure what drug the nurse is referring to. For he was always(all 6 casts)given Versed. It only made him loopy and really funny To me it was like it had a nice buzz going on.....LOL.Anyway never had a problem with it. Before or after. And it did help him be more relaxed when they were taking him away. There is no way he could have made it without. Me either for that matter.Now all that being said I think I remember reading about some kids having problems with it. Hopefully those parents will chime in to help you out.Hope this helps you some.

TashaMommy of 4 year old twin boys- and Fort Worth, TexasSeries of 6 casts for 14 months and now in a night brace. is treated at Texas ish Rite Hospital.You can read 's story at....http://www.infantilescoliosis.org/stories.html

From: Lynn Marsden <lynn_marsden>To: infantile_scoliosis Sent: Fri, February 5, 2010 11:06:00 AMSubject: Question

Hi everyone

Peyton is going in for his 5th cast on Monday and he is always extrememly fussy before going in. I mean actually screaming, whining etc. but as many of you may remember he is a cryer to begin with. Anyway my question is regarding pre anesthetic drugs. The nurses always try to talk my husband and I into giving Peyton these drugs before he is put to sleep to calm him down but I have heard awful things about them. I have heard that kids sometimes have convulsions afterwards and that they are almost always sick with actual vomitting. Is this true? Does anyone have any experience with this. The nurse also said that it has an amnesia affect and it helps the child to forget the seperation when he goes in the OR.

Lynn

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