Update on

[Guest guest]

I meant to say 2 minutes afterward, adding more sustained engagement as we go on....He did great today, really it's been since his evaluation when things during therapy went this smoothly...my prayer is that today continues.

e

To: AutismBehaviorProblems Sent: Tuesday, March 24, 2009 12:06:53 PMSubject: Update on

Hello my little friends!!!!

It's been a rough few weeks...a few wonderfuls, but lots of not so much

's Therapist combines ABA and Floortime...I know for die-hard ABA's as well as Floortimers this idea seems contradictory, as the two seem polar opposites....Pivitol Response is a type of ABA, and that's sort of what my therapist does.......she won't call it that, but it is very pivotal-response-esque

Anyhow... was REALLY struggling...lots of screaming, and as most of you know much more stimming and SIB. It was getting to the point where he would concentrate for 10 seconds, and then he was stimming...All this due to his lack of play skills...while his words and imitation (verbal) are up to a 21 month level (he's 29 months in a couple of days), he play is at a 12 month level....ABA was starting to frustrate him, not because it's descret (nothing against) and no fun...it is fun, they make it fun, but because REINFORCERS stopped working, as when you don't play and or know how, you get bored with reinforce-rs and the natural path to take from there is outbursts, SIB, and stimming...literally checking out.

OK, so at team meeting last Friday, our therapist said..."It's not going well" --- we've seen a total halt in progression (it had been about the last 6 weeks or so that it was going down hill...with even some regression)....anyhow, I know the in's and out's (thanks to so many of you who have takent his path before me). Even though I know the "reasons" for this, and or what might be...we still need to work on progression and learning........sooooooooooooooooooo she said, FLOORTIME ONLY.....ABA, only mastered, like colors, or "do this" i.e. tough your nose...and then the goal if for them to maintain his attention for at least 10 minutes after...hopefully going into minutes upon minutes of play.........this will not only teach him to play, but will make therapy fun again, as well as once he's calm we can add back things he does need to learn...like functions of objects etc.....

I realize that there are many opinions on this, and that we will all do things differently....I respect that, I'm only telling you what we are doing

I was afraid, when I knew I had to go back to strictly floortime with , as it is so much easier when they are little LOL....being the home clown, and the trapeze artist, and the jumping through hoops pro to get his attention and woooooooooooo him is harder at 29 month, as well as I feel like I'm competting with what he prefers to do and that is stim and bite his arm to pieces..........

Good thing is, has always enjoyed engagement...................in the last four days I see that "Gleam" in his eyes again.......it's so awesome!!!!!!!!!!!!!!!!!!! We are working our tails off, jumping through hoops...............but it's worth it to see a calm engaged baby, as well as a calm and more easily soothed "Client" -----

If you pray, I covet them right now --- Pray for the therapists, cause Floortime is A LOT harder then ABA. A LOT. As well as and my bodies ability to "trapeze away" LOL, LOL....

Much love, and as always if you have examples of creative ways to get his attention, please talk to me LOL

e and baby

[Guest guest]

Awe e. I am glad the gleam is back in little s eyes. That is great. I am praying for you and and your family and the therapist too. And I will continue to do so.

Stacie

Hello my little friends!!!!

It's been a rough few weeks...a few wonderfuls, but lots of not so much

's Therapist combines ABA and Floortime...I know for die-hard ABA's as well as Floortimers this idea seems contradictory, as the two seem polar opposites....Pivitol Response is a type of ABA, and that's sort of what my therapist does......she won't call it that, but it is very pivotal-response-esque

Anyhow... was REALLY struggling...lots of screaming, and as most of you know much more stimming and SIB. It was getting to the point where he would concentrate for 10 seconds, and then he was stimming...All this due to his lack of play skills...while his words and imitation (verbal) are up to a 21 month level (he's 29 months in a couple of days), he play is at a 12 month level....ABA was starting to frustrate him, not because it's descret (nothing against) and no fun...it is fun, they make it fun, but because REINFORCERS stopped working, as when you don't play and or know how, you get bored with reinforce-rs and the natural path to take from there is outbursts, SIB, and stimming...literally checking out.

OK, so at team meeting last Friday, our therapist said..."It's not going well" --- we've seen a total halt in progression (it had been about the last 6 weeks or so that it was going down hill...with even some regression)....anyhow, I know the in's and out's (thanks to so many of you who have takent his path before me). Even though I know the "reasons" for this, and or what might be...we still need to work on progression and learning........sooooooooooooooooooo she said, FLOORTIME ONLY.....ABA, only mastered, like colors, or "do this" i.e. tough your nose...and then the goal if for them to maintain his attention for at least 10 minutes after...hopefully going into minutes upon minutes of play........this will not only teach him to play, but will make therapy fun again, as well as once he's calm we can add back things he does need to learn...like functions of objects etc.....

I realize that there are many opinions on this, and that we will all do things differently....I respect that, I'm only telling you what we are doing

I was afraid, when I knew I had to go back to strictly floortime with , as it is so much easier when they are little LOL....being the home clown, and the trapeze artist, and the jumping through hoops pro to get his attention and woooooooooooo him is harder at 29 month, as well as I feel like I'm competting with what he prefers to do and that is stim and bite his arm to pieces..........

Good thing is, has always enjoyed engagement...................in the last four days I see that "Gleam" in his eyes again.......it's so awesome!!!!!!!!!!!!!!!!!!! We are working our tails off, jumping through hoops...............but it's worth it to see a calm engaged baby, as well as a calm and more easily soothed "Client" -----

If you pray, I covet them right now --- Pray for the therapists, cause Floortime is A LOT harder then ABA. A LOT. As well as and my bodies ability to "trapeze away" LOL, LOL....

Much love, and as always if you have examples of creative ways to get his attention, please talk to me LOL

e and baby

Feeling the pinch at the grocery store? Make dinner for $10 or less.

[Guest guest]

So happy to hear that it is going better. Hopefully this will give the break he needs and you'll be back on track soon.. Kellie

To: AutismBehaviorProblems Sent: Tuesday, March 24, 2009 4:09:06 PMSubject: Re: Update on

I meant to say 2 minutes afterward, adding more sustained engagement as we go on....He did great today, really it's been since his evaluation when things during therapy went this smoothly...my prayer is that today continues.

e

To: AutismBehaviorProblems Sent: Tuesday, March 24, 2009 12:06:53 PMSubject: Update on

Hello my little friends!!!!

It's been a rough few weeks...a few wonderfuls, but lots of not so much

's Therapist combines ABA and Floortime...I know for die-hard ABA's as well as Floortimers this idea seems contradictory, as the two seem polar opposites....Pivitol Response is a type of ABA, and that's sort of what my therapist does.......she won't call it that, but it is very pivotal-response-esque

Anyhow... was REALLY struggling...lots of screaming, and as most of you know much more stimming and SIB. It was getting to the point where he would concentrate for 10 seconds, and then he was stimming...All this due to his lack of play skills...while his words and imitation (verbal) are up to a 21 month level (he's 29 months in a couple of days), he play is at a 12 month level....ABA was starting to frustrate him, not because it's descret (nothing against) and no fun...it is fun, they make it fun, but because REINFORCERS stopped working, as when you don't play and or know how, you get bored with reinforce-rs and the natural path to take from there is outbursts, SIB, and stimming...literally checking out.

OK, so at team meeting last Friday, our therapist said..."It's not going well" --- we've seen a total halt in progression (it had been about the last 6 weeks or so that it was going down hill...with even some regression)....anyhow, I know the in's and out's (thanks to so many of you who have takent his path before me). Even though I know the "reasons" for this, and or what might be...we still need to work on progression and learning.........sooooooooooooooooooo she said, FLOORTIME ONLY.....ABA, only mastered, like colors, or "do this" i.e. tough your nose...and then the goal if for them to maintain his attention for at least 10 minutes after...hopefully going into minutes upon minutes of play.........this will not only teach him to play, but will make therapy fun again, as well as once he's calm we can add back things he does need to learn...like functions of objects etc......

I realize that there are many opinions on this, and that we will all do things differently....I respect that, I'm only telling you what we are doing

I was afraid, when I knew I had to go back to strictly floortime with , as it is so much easier when they are little LOL.....being the home clown, and the trapeze artist, and the jumping through hoops pro to get his attention and woooooooooooo him is harder at 29 month, as well as I feel like I'm competting with what he prefers to do and that is stim and bite his arm to pieces..........

Good thing is, has always enjoyed engagement...................in the last four days I see that "Gleam" in his eyes again.......it's so awesome!!!!!!!!!!!!!!!!!!! We are working our tails off, jumping through hoops...............but it's worth it to see a calm engaged baby, as well as a calm and more easily soothed "Client" -----

If you pray, I covet them right now --- Pray for the therapists, cause Floortime is A LOT harder then ABA. A LOT. As well as and my bodies ability to "trapeze away" LOL, LOL....

Much love, and as always if you have examples of creative ways to get his attention, please talk to me LOL

e and baby

[Guest guest]

e, all I can say is that I hear you. I know where you are coming from. It is so hard to know isn't it? I'm glad you have a therapist who does floor time as well as ABA. I'm glad it makes happy. I'm sorry I don't have any advice or suggestions, but I have you in my heart; on my mind, and in my prayers. Keep me up to date. love and blessings, Pat K

Update on

It's been a rough few weeks...a few wonderfuls, but lots of not so much

's Therapist combines ABA and Floortime...I know for die-hard ABA's as well as Floortimers this idea seems contradictory, as the two seem polar opposites....Pivitol Response is a type of ABA, and that's sort of what my therapist does.......she won't call it that, but it is very pivotal-response-esque

Anyhow... was REALLY struggling...lots of screaming, and as most of you know much more stimming and SIB. It was getting to the point where he would concentrate for 10 seconds, and then he was stimming...All this due to his lack of play skills...while his words and imitation (verbal) are up to a 21 month level (he's 29 months in a couple of days), he play is at a 12 month level....ABA was starting to frustrate him, not because it's descret (nothing against) and no fun...it is fun, they make it fun, but because REINFORCERS stopped working, as when you don't play and or know how, you get bored with reinforce-rs and the natural path to take from there is outbursts, SIB, and stimming...literally checking out.

OK, so at team meeting last Friday, our therapist said..."It's not going well" --- we've seen a total halt in progression (it had been about the last 6 weeks or so that it was going down hill...with even some regression)....anyhow, I know the in's and out's (thanks to so many of you who have takent his path before me). Even though I know the "reasons" for this, and or what might be...we still need to work on progression and learning........sooooooooooooooooooo she said, FLOORTIME ONLY.....ABA, only mastered, like colors, or "do this" i.e. tough your nose...and then the goal if for them to maintain his attention for at least 10 minutes after...hopefully going into minutes upon minutes of play.........this will not only teach him to play, but will make therapy fun again, as well as once he's calm we can add back things he does need to learn...like functions of objects etc.....

I realize that there are many opinions on this, and that we will all do things differently....I respect that, I'm only telling you what we are doing

I was afraid, when I knew I had to go back to strictly floortime with , as it is so much easier when they are little LOL....being the home clown, and the trapeze artist, and the jumping through hoops pro to get his attention and woooooooooooo him is harder at 29 month, as well as I feel like I'm competting with what he prefers to do and that is stim and bite his arm to pieces..........

Good thing is, has always enjoyed engagement...................in the last four days I see that "Gleam" in his eyes again.......it's so awesome!!!!!!!!!!!!!!!!!!! We are working our tails off, jumping through hoops...............but it's worth it to see a calm engaged baby, as well as a calm and more easily soothed "Client" -----

If you pray, I covet them right now --- Pray for the therapists, cause Floortime is A LOT harder then ABA. A LOT. As well as and my bodies ability to "trapeze away" LOL, LOL....

Much love, and as always if you have examples of creative ways to get his attention, please talk to me LOL

e and baby

Live traffic, local info, maps, directions and more with the NEW MapQuest Toolbar. Get it now!

[Guest guest]

Thank you....I say the gleem is back...You know what I mean. He always has a gleem if he is stimming and or coming and going with his verbal stims, and or spinning....etc---he's also always had that gleem with me, God love him...but today I saw a gleem with regard to his therapist....He had that at the beginning but these last few weeks (more than that) it seemed to be gone...VERY hard on him ----- it was nice, but I'm guarded...

One thing she did say today, was that even though it was rough on him, it has gotten him to the point where Floortime will mean more as well.........hard to explain, but I did hear and see some nice things today. It's just sooooooooooooooo hard for to play, he want's to stim so badly. A little is fine, but I don't want for him to be limited by them.

I'm rambling....finding my way....it's harder now at 29 months than it was at 20 --- I know it gets easier and harder both as the years go on.......................just today I told him it was time to come in...he fell to the ground (very 2), and when we got in he pursisted in trying to rip the picture and bag jacket hooks off the way................oh my we have a temper.

LOL

We'll make it.

e

To: AutismBehaviorProblems Sent: Tuesday, March 24, 2009 10:24:02 PMSubject: Re: Update on

Awe e.. I am glad the gleam is back in little s eyes. That is great. I am praying for you and and your family and the therapist too. And I will continue to do so.

Stacie

Hello my little friends!!!!

It's been a rough few weeks...a few wonderfuls, but lots of not so much

's Therapist combines ABA and Floortime...I know for die-hard ABA's as well as Floortimers this idea seems contradictory, as the two seem polar opposites....Pivitol Response is a type of ABA, and that's sort of what my therapist does......she won't call it that, but it is very pivotal-response-esque

Anyhow... was REALLY struggling...lots of screaming, and as most of you know much more stimming and SIB. It was getting to the point where he would concentrate for 10 seconds, and then he was stimming...All this due to his lack of play skills...while his words and imitation (verbal) are up to a 21 month level (he's 29 months in a couple of days), he play is at a 12 month level....ABA was starting to frustrate him, not because it's descret (nothing against) and no fun...it is fun, they make it fun, but because REINFORCERS stopped working, as when you don't play and or know how, you get bored with reinforce-rs and the natural path to take from there is outbursts, SIB, and stimming...literally checking out.

OK, so at team meeting last Friday, our therapist said..."It's not going well" --- we've seen a total halt in progression (it had been about the last 6 weeks or so that it was going down hill....with even some regression)....anyhow, I know the in's and out's (thanks to so many of you who have takent his path before me). Even though I know the "reasons" for this, and or what might be...we still need to work on progression and learning........sooooooooooooooooooo she said, FLOORTIME ONLY.....ABA, only mastered, like colors, or "do this" i.e. tough your nose....and then the goal if for them to maintain his attention for at least 10 minutes after...hopefully going into minutes upon minutes of play........this will not only teach him to play, but will make therapy fun again, as well as once he's calm we can add back things he does need to learn...like functions of objects etc.....

I realize that there are many opinions on this, and that we will all do things differently.....I respect that, I'm only telling you what we are doing

I was afraid, when I knew I had to go back to strictly floortime with , as it is so much easier when they are little LOL....being the home clown, and the trapeze artist, and the jumping through hoops pro to get his attention and woooooooooooo him is harder at 29 month, as well as I feel like I'm competting with what he prefers to do and that is stim and bite his arm to pieces..........

Good thing is, has always enjoyed engagement...................in the last four days I see that "Gleam" in his eyes again.......it's so awesome!!!!!!!!!!!!!!!!!!! We are working our tails off, jumping through hoops...............but it's worth it to see a calm engaged baby, as well as a calm and more easily soothed "Client" -----

If you pray, I covet them right now --- Pray for the therapists, cause Floortime is A LOT harder then ABA. A LOT. As well as and my bodies ability to "trapeze away" LOL, LOL.....

Much love, and as always if you have examples of creative ways to get his attention, please talk to me LOL

e and baby

Feeling the pinch at the grocery store? Make dinner for $10 or less.

[Guest guest]

Oh e! I know! I so know what you mean sweetie. I am here for you always and will always be here. Whenever you need me, and I am sure I can say us as a group, I/we are here. Love to you and your family.

Stacie

Thank you....I say the gleem is back...You know what I mean. He always has a gleem if he is stimming and or coming and going with his verbal stims, and or spinning....etc---he's also always had that gleem with me, God love him...but today I saw a gleem with regard to his therapist....He had that at the beginning but these last few weeks (more than that) it seemed to be gone...VERY hard on him ----- it was nice, but I'm guarded...

One thing she did say today, was that even though it was rough on him, it has gotten him to the point where Floortime will mean more as well.........hard to explain, but I did hear and see some nice things today. It's just sooooooooooooooo hard for to play, he want's to stim so badly. A little is fine, but I don't want for him to be limited by them.

I'm rambling....finding my way....it's harder now at 29 months than it was at 20 --- I know it gets easier and harder both as the years go on.......................just today I told him it was time to come in...he fell to the ground (very 2), and when we got in he pursisted in trying to rip the picture and bag jacket hooks off the way................oh my we have a temper.

LOL

We'll make it.

e

To: AutismBehaviorProblems Sent: Tuesday, March 24, 2009 10:24:02 PMSubject: Re: Update on

Awe e.. I am glad the gleam is back in little s eyes. That is great. I am praying for you and and your family and the therapist too. And I will continue to do so.

Stacie

Hello my little friends!!!!

It's been a rough few weeks...a few wonderfuls, but lots of not so much

's Therapist combines ABA and Floortime...I know for die-hard ABA's as well as Floortimers this idea seems contradictory, as the two seem polar opposites....Pivitol Response is a type of ABA, and that's sort of what my therapist does......she won't call it that, but it is very pivotal-response-esque

Anyhow... was REALLY struggling...lots of screaming, and as most of you know much more stimming and SIB. It was getting to the point where he would concentrate for 10 seconds, and then he was stimming...All this due to his lack of play skills...while his words and imitation (verbal) are up to a 21 month level (he's 29 months in a couple of days), he play is at a 12 month level....ABA was starting to frustrate him, not because it's descret (nothing against) and no fun...it is fun, they make it fun, but because REINFORCERS stopped working, as when you don't play and or know how, you get bored with reinforce-rs and the natural path to take from there is outbursts, SIB, and stimming...literally checking out.

OK, so at team meeting last Friday, our therapist said..."It's not going well" --- we've seen a total halt in progression (it had been about the last 6 weeks or so that it was going down hill....with even some regression)....anyhow, I know the in's and out's (thanks to so many of you who have takent his path before me). Even though I know the "reasons" for this, and or what might be...we still need to work on progression and learning........sooooooooooooooooooo she said, FLOORTIME ONLY.....ABA, only mastered, like colors, or "do this" i.e. tough your nose....and then the goal if for them to maintain his attention for at least 10 minutes after...hopefully going into minutes upon minutes of play........this will not only teach him to play, but will make therapy fun again, as well as once he's calm we can add back things he does need to learn...like functions of objects etc.....

I realize that there are many opinions on this, and that we will all do things differently.....I respect that, I'm only telling you what we are doing

I was afraid, when I knew I had to go back to strictly floortime with , as it is so much easier when they are little LOL....being the home clown, and the trapeze artist, and the jumping through hoops pro to get his attention and woooooooooooo him is harder at 29 month, as well as I feel like I'm competting with what he prefers to do and that is stim and bite his arm to pieces..........

Good thing is, has always enjoyed engagement...................in the last four days I see that "Gleam" in his eyes again.......it's so awesome!!!!!!!!!!!!!!!!!!! We are working our tails off, jumping through hoops...............but it's worth it to see a calm engaged baby, as well as a calm and more easily soothed "Client" -----

If you pray, I covet them right now --- Pray for the therapists, cause Floortime is A LOT harder then ABA. A LOT. As well as and my bodies ability to "trapeze away" LOL, LOL.....

Much love, and as always if you have examples of creative ways to get his attention, please talk to me LOL

e and baby

Feeling the pinch at the grocery store? Make dinner for $10 or less. Feeling the pinch at the grocery store? Make dinner for $10 or less.

[Guest guest]

Our appointment at the Denver CH went good last week. I think...

We brought our x-ray from July 9, which the DCH doc estimated to be in the 20*

range. I told him we were given two numbers- 13 top, 28 bottom, little

rotation. He agreed there was little rotation and encouraged us to 'wait and

see'. Knowing what I know (thank you, everyone), I was insistent on another

x-ray, which he readily agreed to do. He measured this one at 19*. I feel like

her back is not as noticeably curved now as it used to be, so I was hoping to

see a lower number, but I'm happy it did come down.

He also agreed she appears to have decreased muscle tone(hypotonia?), but said

it was common with IS and nothing that seemed extreme. She'll be 6 months in a

few days- nowhere near sitting, rarely puts weight on her legs, and doesn't

really reach for toys or anything. I'm anxious for her 6 month check-up with

our local pediatrician, this Friday.

We've also forwarded SLC Shriners the x-ray from 8/28 and a chest x-ray that was

taken hours after birth that we forgot about. We canceled our appointment with

them later this month- hopefully someone got to jump in that spot!

I do have one concern re: the doc saying he was trained by Mehta herself,

indicates he only does Mehta casts, and has the AMIL table. , if you're

reading this, can you give me a call?

Thanks!

[Guest guest]

Okay, I'm freaking out a little... while doing research on hypotonia, I read

this about CP, which sounds an awful lot like . She was also sent home

with a bili-blanket as an infant due to jaundice!?!

Athetoid or dyskinetic is mixed muscle tone— and sometimes hypotonia (Hypotonia

will usually occur before 1 year old; the muscle tone will be increased with age

and progress to Hypertonia). People with athetoid CP have trouble holding

themselves in an upright, steady position for sitting or walking, and often show

involuntary motions. For some people with athetoid CP, it takes a lot of work

and concentration to get their hand to a certain spot (like scratching their

nose or reaching for a cup). Because of their mixed tone and trouble keeping a

position, they may not be able to hold onto objects (such as a toothbrush or

pencil). About one quarter of all people with CP have athetoid CP. The damage

occurs to the extrapyramidal motor system and/or pyramidal tract and to the

basal ganglia. It occurs in 40 percent of all cases.[citation needed]. In

newborn infants, high bilirubin levels in the blood, if left untreated, can lead

to brain damage in certain areas. This may also lead to athetoid cerebral palsy.

>

> Our appointment at the Denver CH went good last week. I think...

>

> We brought our x-ray from July 9, which the DCH doc estimated to be in the 20*

range. I told him we were given two numbers- 13 top, 28 bottom, little

rotation. He agreed there was little rotation and encouraged us to 'wait and

see'. Knowing what I know (thank you, everyone), I was insistent on another

x-ray, which he readily agreed to do. He measured this one at 19*. I feel like

her back is not as noticeably curved now as it used to be, so I was hoping to

see a lower number, but I'm happy it did come down.

>

> He also agreed she appears to have decreased muscle tone(hypotonia?), but said

it was common with IS and nothing that seemed extreme. She'll be 6 months in a

few days- nowhere near sitting, rarely puts weight on her legs, and doesn't

really reach for toys or anything. I'm anxious for her 6 month check-up with

our local pediatrician, this Friday.

>

> We've also forwarded SLC Shriners the x-ray from 8/28 and a chest x-ray that

was taken hours after birth that we forgot about. We canceled our appointment

with them later this month- hopefully someone got to jump in that spot!

>

> I do have one concern re: the doc saying he was trained by Mehta herself,

indicates he only does Mehta casts, and has the AMIL table. , if you're

reading this, can you give me a call?

>

> Thanks!

>

>

[Guest guest]

Im sorry Connie. Why cant they halo and then cast him to buy more time?

Im sure you have asked why and posted about it, but I am so out of the loop

these days.....I really havent been able to keep up. Im glad there is at least

some progress, albeit slow. My thoughts are with you, hon. Keep up the good

fight, like I know you have, and will continue, until you and your docs have

come up with the best care plan for your darling boy.

Love,

HRH

>

>

>

>

> I took to get results from his latest bone density scan and we see

some improvement but are still nowhere near where we have to be in order for him

to be able to hold some kind of rods. We will do at least two more pamidronate

infusion treatments. Which means at least 10 months before even thinking about

surgery. I am not sure how he will do. His curves are so horrible and we have

nothing holding or correcting them. His brace is doing nothing. It is scary and

I have a new fear of spontaneous fusion. We will see his orthopedic surgeon in

December and discuss Halo traction but I know he will only want to do it if

there is a surgery attached to the end of the traction period. We shall see.

i'll keep you posted.

>

>

> This is why Early treatment is so important.

>

> Connie

>

[Guest guest]

Im sorry Connie. Why cant they halo and then cast him to buy more time?

Im sure you have asked why and posted about it, but I am so out of the loop

these days.....I really havent been able to keep up. Im glad there is at least

some progress, albeit slow. My thoughts are with you, hon. Keep up the good

fight, like I know you have, and will continue, until you and your docs have

come up with the best care plan for your darling boy.

Love,

HRH

>

>

>

>

> I took to get results from his latest bone density scan and we see

some improvement but are still nowhere near where we have to be in order for him

to be able to hold some kind of rods. We will do at least two more pamidronate

infusion treatments. Which means at least 10 months before even thinking about

surgery. I am not sure how he will do. His curves are so horrible and we have

nothing holding or correcting them. His brace is doing nothing. It is scary and

I have a new fear of spontaneous fusion. We will see his orthopedic surgeon in

December and discuss Halo traction but I know he will only want to do it if

there is a surgery attached to the end of the traction period. We shall see.

i'll keep you posted.

>

>

> This is why Early treatment is so important.

>

> Connie

>

[Guest guest]

Im sorry Connie. Why cant they halo and then cast him to buy more time?

Im sure you have asked why and posted about it, but I am so out of the loop

these days.....I really havent been able to keep up. Im glad there is at least

some progress, albeit slow. My thoughts are with you, hon. Keep up the good

fight, like I know you have, and will continue, until you and your docs have

come up with the best care plan for your darling boy.

Love,

HRH

>

>

>

>

> I took to get results from his latest bone density scan and we see

some improvement but are still nowhere near where we have to be in order for him

to be able to hold some kind of rods. We will do at least two more pamidronate

infusion treatments. Which means at least 10 months before even thinking about

surgery. I am not sure how he will do. His curves are so horrible and we have

nothing holding or correcting them. His brace is doing nothing. It is scary and

I have a new fear of spontaneous fusion. We will see his orthopedic surgeon in

December and discuss Halo traction but I know he will only want to do it if

there is a surgery attached to the end of the traction period. We shall see.

i'll keep you posted.

>

>

> This is why Early treatment is so important.

>

> Connie

>

[Guest guest]

Connie,

Sending prayers, strength and good energy to you and your precious . I pray his bones grow stronger, and that you and his doctors find the best possible path for him! Heidi, Bexon's Mama, (2 years old, in 4th cast from Salt Lake City Shriners, currently down from 61 degrees to 21)

To: infantile_scoliosis Sent: Fri, November 6, 2009 2:45:26 PMSubject: Re: update on

Im sorry Connie. Why cant they halo and then cast him to buy more time? Im sure you have asked why and posted about it, but I am so out of the loop these days.....I really havent been able to keep up. Im glad there is at least some progress, albeit slow. My thoughts are with you, hon. Keep up the good fight, like I know you have, and will continue, until you and your docs have come up with the best care plan for your darling boy.Love,HRH>> > > > I took to get results from his latest bone density scan and we see some improvement but are still nowhere near where we have to be in order for him to be able to hold some kind of rods. We will do at least two more pamidronate infusion

treatments. Which means at least 10 months before even thinking about surgery. I am not sure how he will do. His curves are so horrible and we have nothing holding or correcting them. His brace is doing nothing. It is scary and I have a new fear of spontaneous fusion. We will see his orthopedic surgeon in December and discuss Halo traction but I know he will only want to do it if there is a surgery attached to the end of the traction period. We shall see. i'll keep you posted.> > > This is why Early treatment is so important.> > Connie>

[Guest guest]

Connie,

Sending prayers, strength and good energy to you and your precious . I pray his bones grow stronger, and that you and his doctors find the best possible path for him! Heidi, Bexon's Mama, (2 years old, in 4th cast from Salt Lake City Shriners, currently down from 61 degrees to 21)

To: infantile_scoliosis Sent: Fri, November 6, 2009 2:45:26 PMSubject: Re: update on

Im sorry Connie. Why cant they halo and then cast him to buy more time? Im sure you have asked why and posted about it, but I am so out of the loop these days.....I really havent been able to keep up. Im glad there is at least some progress, albeit slow. My thoughts are with you, hon. Keep up the good fight, like I know you have, and will continue, until you and your docs have come up with the best care plan for your darling boy.Love,HRH>> > > > I took to get results from his latest bone density scan and we see some improvement but are still nowhere near where we have to be in order for him to be able to hold some kind of rods. We will do at least two more pamidronate infusion

treatments. Which means at least 10 months before even thinking about surgery. I am not sure how he will do. His curves are so horrible and we have nothing holding or correcting them. His brace is doing nothing. It is scary and I have a new fear of spontaneous fusion. We will see his orthopedic surgeon in December and discuss Halo traction but I know he will only want to do it if there is a surgery attached to the end of the traction period. We shall see. i'll keep you posted.> > > This is why Early treatment is so important.> > Connie>

[Guest guest]

Connie,

Sending prayers, strength and good energy to you and your precious . I pray his bones grow stronger, and that you and his doctors find the best possible path for him! Heidi, Bexon's Mama, (2 years old, in 4th cast from Salt Lake City Shriners, currently down from 61 degrees to 21)

To: infantile_scoliosis Sent: Fri, November 6, 2009 2:45:26 PMSubject: Re: update on

Im sorry Connie. Why cant they halo and then cast him to buy more time? Im sure you have asked why and posted about it, but I am so out of the loop these days.....I really havent been able to keep up. Im glad there is at least some progress, albeit slow. My thoughts are with you, hon. Keep up the good fight, like I know you have, and will continue, until you and your docs have come up with the best care plan for your darling boy.Love,HRH>> > > > I took to get results from his latest bone density scan and we see some improvement but are still nowhere near where we have to be in order for him to be able to hold some kind of rods. We will do at least two more pamidronate infusion

treatments. Which means at least 10 months before even thinking about surgery. I am not sure how he will do. His curves are so horrible and we have nothing holding or correcting them. His brace is doing nothing. It is scary and I have a new fear of spontaneous fusion. We will see his orthopedic surgeon in December and discuss Halo traction but I know he will only want to do it if there is a surgery attached to the end of the traction period. We shall see. i'll keep you posted.> > > This is why Early treatment is so important.> > Connie>

[Guest guest]

Thanks Patty,

It's quite a miracle that there are no lung issues with such a huge curve. We see a pulmonist regularly to keep a close eye on things and he is in constant contact with our orthopedic surgeon.

Although the curve is so huge, we haven't seen much change in it in the last 6 months. This is good news. As long as it stays at 106 degrees (cringe) we should be okay.

Connie

update on

Well, last week we took to his 6 month follow up with our doc at ish Rite. The last appt was not fun as the doc informed me that he wants to only do 1 last surgery and that is fusion. is 11 (10 at the time) and only 44 inches tall. I of course found myself adamantly disagreeing with him and every other specialist, nurse and fellow in the room.

So for this visit I brought Roy (husband) with me for support and back up. It's hard to have to disagree with a surgeon..... I trust our doc, but I am strongly against fusion at this time.

Anyway, the new fellow actually gave me a number which is something that our doc NEVER does....Lumbar 66 degrees and thoracic 106 degrees....106. ...106. Just typing that number makes me so sick to my stomach. Any kind of growing rods are not possible right now because of 's severe osteopenia. We're working on getting those bones stronger but it's taking so long.

At any rate, our doc said as long as there are no lung issues, which there aren't, we can hold off on fusion. He has said at this point he will fuse when WE are ready. I don't know what to make of it I am just happy that we have a whole other 6 months before we have to get that horrible number... 6 months at 11 years old is a lifetime of growing time.

I hate scoliosis!

Thanks for your ear.

Connie

[Guest guest]

Thanks Patty,

It's quite a miracle that there are no lung issues with such a huge curve. We see a pulmonist regularly to keep a close eye on things and he is in constant contact with our orthopedic surgeon.

Although the curve is so huge, we haven't seen much change in it in the last 6 months. This is good news. As long as it stays at 106 degrees (cringe) we should be okay.

Connie

update on

Well, last week we took to his 6 month follow up with our doc at ish Rite. The last appt was not fun as the doc informed me that he wants to only do 1 last surgery and that is fusion. is 11 (10 at the time) and only 44 inches tall. I of course found myself adamantly disagreeing with him and every other specialist, nurse and fellow in the room.

So for this visit I brought Roy (husband) with me for support and back up. It's hard to have to disagree with a surgeon..... I trust our doc, but I am strongly against fusion at this time.

Anyway, the new fellow actually gave me a number which is something that our doc NEVER does....Lumbar 66 degrees and thoracic 106 degrees....106. ...106. Just typing that number makes me so sick to my stomach. Any kind of growing rods are not possible right now because of 's severe osteopenia. We're working on getting those bones stronger but it's taking so long.

At any rate, our doc said as long as there are no lung issues, which there aren't, we can hold off on fusion. He has said at this point he will fuse when WE are ready. I don't know what to make of it I am just happy that we have a whole other 6 months before we have to get that horrible number... 6 months at 11 years old is a lifetime of growing time.

I hate scoliosis!

Thanks for your ear.

Connie

[Guest guest]

I think all our Docs at ish are noticing a pattern lately. I LOVE it. Thank you ISOP Joanmom to Hayden 343 degrees down from 62Cast number 3Treated at ish Rite Hospital Dallas, TX

To: infantile_scoliosis Sent: Mon, January 25, 2010 9:09:07 PMSubject: Re: update on

absolutely! my doc at ish calls me the same thing with a smile and i take it as it is...a parent looking out for their child...a compliment for sure! go connie!!!

melissa

From: NIck Guthe <nickgutheyahoo (DOT) com>Subject: Re: [infantile_scoliosi s] update on To: infantile_scoliosis @yahoogroups. comDate: Monday, January 25, 2010, 9:05 PM

The squeaky wheel gets the grease! I would take it as a compliment, too, you are a great Mom. Heidi, Bexon's Mama, (2.5 years old, in 5th cast from Salt Lake City Shriners, currently down from 61 degrees to 23)

To: infantile_scoliosis @yahoogroups. comSent: Mon, January 25, 2010 11:53:02 AMSubject: Re: [infantile_scoliosi s] update on

Thanks everyone for your support.

It is quite a miracle that he has such a huge curve and no lung problems...

Our doc calls me a squeaky wheel and I decided to take it as a compliment.. I am very thankful that he is respecting our wishes and in a way supporting our decision.

Connie

[infantile_scoliosi s] update on

Well, last week we took to his 6 month follow up with our doc at ish Rite. The last appt was not fun as the doc informed me that he wants to only do 1 last surgery and that is fusion. is 11 (10 at the time) and only 44 inches tall. I of course found myself adamantly disagreeing with him and every other specialist, nurse and fellow in the room.

So for this visit I brought Roy (husband) with me for support and back up. It's hard to have to disagree with a surgeon...... I trust our doc, but I am strongly against fusion at this time.

Anyway, the new fellow actually gave me a number which is something that our doc NEVER does....Lumbar 66 degrees and thoracic 106 degrees....106. ...106. Just typing that number makes me so sick to my stomach. Any kind of growing rods are not possible right now because of 's severe osteopenia. We're working on getting those bones stronger but it's taking so long.

At any rate, our doc said as long as there are no lung issues, which there aren't, we can hold off on fusion. He has said at this point he will fuse when WE are ready. I don't know what to make of it I am just happy that we have a whole other 6 months before we have to get that horrible number... 6 months at 11 years old is a lifetime of growing time.

I hate scoliosis!

Thanks for your ear.

Connie

[Guest guest]

I think all our Docs at ish are noticing a pattern lately. I LOVE it. Thank you ISOP Joanmom to Hayden 343 degrees down from 62Cast number 3Treated at ish Rite Hospital Dallas, TX

To: infantile_scoliosis Sent: Mon, January 25, 2010 9:09:07 PMSubject: Re: update on

absolutely! my doc at ish calls me the same thing with a smile and i take it as it is...a parent looking out for their child...a compliment for sure! go connie!!!

melissa

From: NIck Guthe <nickgutheyahoo (DOT) com>Subject: Re: [infantile_scoliosi s] update on To: infantile_scoliosis @yahoogroups. comDate: Monday, January 25, 2010, 9:05 PM

The squeaky wheel gets the grease! I would take it as a compliment, too, you are a great Mom. Heidi, Bexon's Mama, (2.5 years old, in 5th cast from Salt Lake City Shriners, currently down from 61 degrees to 23)

To: infantile_scoliosis @yahoogroups. comSent: Mon, January 25, 2010 11:53:02 AMSubject: Re: [infantile_scoliosi s] update on

Thanks everyone for your support.

It is quite a miracle that he has such a huge curve and no lung problems...

Our doc calls me a squeaky wheel and I decided to take it as a compliment.. I am very thankful that he is respecting our wishes and in a way supporting our decision.

Connie

[infantile_scoliosi s] update on

Well, last week we took to his 6 month follow up with our doc at ish Rite. The last appt was not fun as the doc informed me that he wants to only do 1 last surgery and that is fusion. is 11 (10 at the time) and only 44 inches tall. I of course found myself adamantly disagreeing with him and every other specialist, nurse and fellow in the room.

So for this visit I brought Roy (husband) with me for support and back up. It's hard to have to disagree with a surgeon...... I trust our doc, but I am strongly against fusion at this time.

Anyway, the new fellow actually gave me a number which is something that our doc NEVER does....Lumbar 66 degrees and thoracic 106 degrees....106. ...106. Just typing that number makes me so sick to my stomach. Any kind of growing rods are not possible right now because of 's severe osteopenia. We're working on getting those bones stronger but it's taking so long.

At any rate, our doc said as long as there are no lung issues, which there aren't, we can hold off on fusion. He has said at this point he will fuse when WE are ready. I don't know what to make of it I am just happy that we have a whole other 6 months before we have to get that horrible number... 6 months at 11 years old is a lifetime of growing time.

I hate scoliosis!

Thanks for your ear.

Connie