Grace

[Guest guest]

Dear Grace;

I too am halfway through treatment.....and sides have gotten so much worse in

the last month......started taking an antidepressant (Celexa) a couple of

days ago....i might already be feeling some relief....are you on an

anti-depressant? Diane

[Guest guest]

Hi

Thanks for the tip about a reward. Now that I think of it this would

work so much better for my daughter than taking something away, which

would just make her feel rejected. Just to clarify, it is only my

oldest daughter who is a teenager (13) and has the BDD type behaviors

along with skin picking and I think a form of trich involving her

eyebrows. It is the compulsiveness of her grooming behaviors that

strikes me. On bad days, she has to do them even when she doesn't

feel like it, or is too tired, or it keeps her from going on an

outing. There also seems to be a trigger in our saying " how

long 'till you're ready? " to her, that just sets her off somehow and

then she can't go because she is making us wait. There are enough

good days, though, that we can be lulled into a hopeful sense of it

perhaps being a phase, but think we are into wishful thinking there.

My second daughter (9) has compulsive behaviors that are not like BDD

at all but alot of social anxiety-inhibitions and need for things or

times (events) to be perfect, nice, or pretty or else " everything is

ruined " . The focus will change frequently and the " needs " often go

away completely when she is rested and secure. She is the daughter we

have not addressed yet with the therapist. With both daughters, it is

meltdowns, and overreactions, and panicky behavior that tips me off

it is more than normal anxiety (since moving can cause a good deal of

normal anxiety). Also, with my oldest, the avoidances have been

getiing more severe, so that tells me it is more than normal too.

Still, I am reluctant to start with meds, reading of all the side

effects.

Thanks for yourthoughts!

Grace

> I don't have a teenager yet (only a pre-teen who is eager to become

a

> teenager), but I think you've come up with a good consequence if

teenager

> 1 doesn't do what you say to do - take away the cd player. But

tell her

> ahead of time that taking away the cd player will be the

consequence she

> pays for not going to church. Or - since you can only take away a

cd

> player one time - why not figure out which of her cd's are most

dear ot

> her and take away one or a few each time she misses church. Or you

could

> turn this into a reward situation and offer to buy her a cd after

she has

> attended a certain number of church sessions (depending on how much

she

> loves cds, of course). Or let her approach church gradually.

Allow her

> to stay for only a portion of the church service the first time -

> gradually increasing the length of the stay. Just some ideas.

>

> As far as your second teenager goes (and remember that I'm new to

therapy

> for , too), I don't have any good suggestions because I

think I

> was a lot like her - worried other kids woudl think I was ugly,

taking

> every opportunity to glance at myself in any mirror I passed, etc.

I

> wish you luck, though. I know it must be much harder to get help

for a

> teenager than it is for a 7-y.o. boy. My friend's daughter was

taking

> too long preening every morning, nearly being late for school. My

friend

> took her daughter to a therapist, but she says her daughter and the

> therapist just " chit-chatted, " because her daughter didn't want to

visit

> the therapist. My friend says her daughter just stopped the

behavior

> once she became better adjusted to her new shcool. That's not the

> answer, though, because we know these behaviors are triggered by

> stressful situations and stress is here to stay.

> -Jean

> ________________________________________________________________

> GET INTERNET ACCESS FROM JUNO!

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[Guest guest]

Thanks for the info Vivian, I will look into the NAMI course. I think

we actually have a hard time accepting the words " mental illness "

or " disorder " etc. and we need to get over that squeamishness in

order to make better progress. Funny, I looked into NAMI support

years ago but was in regards to my brother who was going to stay with

us for awhile, before my daughter's problems had surfaced.

Our vacation was great, it was the first in 14 yrs of marriage, b/c

we normally would use vacation time to visit the grandparents. It is

a privelege to live where we can see such beautiful places. I think

the ocean is very therapeutic (central coast-rocky with crashing

waves and very few people) it gives you a sense of your smallness and

makes your worries seem less significant.

Grace (CA)

In @y..., ruth <ruth2b4@y...> wrote:

> Grace wrote: Our vacation was beautiful (CA

> seaside) sounds wonderful, I can hear the waves and

> see the pelicans! I am jealous!

>

> until my husband and I

> > started fighting about the girls. He calls me an

> armchair

> > psychologist and states that I permit their

> behavior.

> Grace, My family tells me I have OCD about the

> disorder OCD!

> One of the things I thought about when you talked

> about your husband fighting with you about the girls

> was the NAMI Family to Family

> course.(http://www.nami.org/family/index.html) It is

> called different things in different areas, but it is

> something to check into. My husband and I took it and

> it made us realize how each one of us brings our own

> dissapointments and hopes and fears to the family..and

> unfortunetly we are NOT always on the same page. I was

> able to understand our situation better AND learn a

> whole heck of a lot about the major mental illnesses

> in a supportive environment. It is so easy to point a

> finger and have communication break down when we are

> living such stressful lives. On a day I was willing

> to take charge and do something about our sons care,

> my husband would be reluctant...then it would switch

> and we always felt like we were chasing our tails! But

> this class made us realize how this is a normal thing

> that happens in families with mental illness.

> I say to my husband when he gives me grief about

> things " How is this helping our situation? "

> I think it is wonderful that you have learned so much

> to help your family. Hope things are going well for

> you. Let us know.

> Vivian in WA ST

>

>

>

> __________________________________________________

>

[Guest guest]

Please keep us posted how the increase of taurine went!

[Guest guest]

,

It's been about a week now since we increased it and so far she seems to be

taking it well.

Grace

sarahbri813@... wrote:

Please keep us posted how the increase of taurine went!

[Guest guest]

Dear Grace,

Go easy on yourself. You are a wonderful mom. What sort of parent

would you be if you were unwilling to take risks, especially in

uncharted territory? No one can fault you for taking a well thought

out risk, ever. Pat yourself on the back for all the extraordinary

efforts you take for your children, not just .

Zoe

> > > > > > Zoe,

> > > > > >

> > > > > > Thanks for your help! I just learned a real lesson on

> herbs

> > > and

> > > > > how they can cause problems if they are not right for you.

I

> > > went

> > > > to

> > > > > this Homeopath for a consultation and I decided at that

time

> to

> > > > wait

> > > > > until was off her meds before deciding what we

> should

> > do

> > > > to

> > > > > help her naturally. Well, we started talking about

> 's

> > > ADD

> > > > > and she recommended this herb concoction called Calm Jr.

and

> > > after

> > > > > reading the pamphlet she gave me, I decided to give it a

try

> > > since

> > > > > had all the symptoms it stated that it was good

for.

> > To

> > > > make

> > > > > a story short, two weeks later, started acting

> really

> > > > > strange, irritable, mean, wouldn't listen to a word I said,

> was

> > > > > waking up three to four times at night and looked so tired

> and

> > > was

> > > > > always crying. I wasn't thinking about the herb capsules

and

> > was

> > > > > driving myself crazy wondering if maybe this is the way she

> was

> > > > going

> > > > > to be off the meds since we just took her off of it two

weeks

> > > ago,

> > > > > then my husband said what about the herbs we just put her

> > > > > > on and that made sense since this was the only change we

> had

> > > > just

> > > > > made, so we took her off and thank God she's back to her

> happy

> > > > normal

> > > > > self, but I was really worried for awhile there. It was a

> > > mixture

> > > > of

> > > > > about 10 herbs in one capsule and she had me give

3

> > > > capsules

> > > > > twice a day. When I called her to tell her what was

> happening,

> > > she

> > > > > said that noone ever complained about this product, I don't

> > know

> > > > > whether this is true or not, but the fact is that it didn't

> > work

> > > > for

> > > > > . Herbs are a litle more tricky than supplements

> even

> > > the

> > > > > more common ones, so you do have to do your homework or

work

> > with

> > > a

> > > > > real professional when trying them specially on children.

> > > > > >

> > > > > > Grace

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

[Guest guest]

HI GRACE,LIKE MYSELF SINCE LEAVING MY JOB 2 YEARS AGO, I HAVEN'T HAD THE

MIGRAINES LIKE BEFORE I GUESS BECAUSE OF IT MAYBE BEING SO STRESSFUL WORKING FOR

A LAW FIRM 13 YEARS. I'D GET THEM EVERYDAY,I GUESS GOD WAS TELLING ME TO GET

AWAY FROM THERE.TAKE CARE GRACE LOVE,MARK

Mark Schauss <schauss@...> wrote:Absolutely Grace. Migraines are

very much like seizures in so many ways.

When my wife and I were looking backwards in our families history for any

epileptics all we could find was both of our mothers had a history of

migraines. Genetics? Maybe. Still, something to think about.

Mark Schauss, MBA, DB

www.carbonbased.com

[ ] Re: glucose 6 phosphate dehydrogenase(now ADHD)

I'm not a member of epilepsy research. I'll check it out.

Lots of causes of ADHD. One of the most common I believe is diet

related. High glycemic foods. Hypoglycemia. The blood sugar rises

after the high glycemic foods and then it drops to nothing when that

spike is gone. Then the brain is forced to search for more fuel.

In these cases, the fuel of choice is adrenaline. Someone being on

adrenaline all the time can be fairly intolerable.LOL. I think that

my other daughter's system switches over to glutamines for some

reason. I only have a slight understanding of this so I may be

interpreting this wrong or have a very elementary grasp of this.

If you've seen MRI scans of ADHD kids, the glucose flow to the

frontal lobes of the brains in ADHD children is very low. The

frontal lobes being the executive functioning.

In addition, food dyes and additives do have an effect though people

choose to believe they don't. Yellow #5 is reportedly a known zinc

depleter, for example.

In a study that came out awhile ago, children supplemented with zinc

did just as well as those on prescription meds.

Zinc has a relationship to copper. Copper has a relationship with

iron. Iron has a relationship with insulin. Back to the sugar

control again.

Unfortunately, supplementing too much zinc can knock copper out of

balance in no time and still cause problems. I'm still learning

about that too.

Low copper is interesting as well. Not enough copper can be one of

the causes of anemia. (As well as low B12).

There is a lady with a website (www.autismhelpforyou.com) who

maintains that schizo,autism,alzheimers,etc are ALL really epilepsy

at its worst. All epilepsy related. I really think this basic idea

is dead on. She did a bunch of research on insulin and iron. You

have to find it on her site...it's an extremely busy looking site,

but the iron insulin info was fascinating. On her site, she

discusses how schizo used to be treated with insulin in the 1930s.

I don't give my daughters any supplements at this time except for

enzymes (those rock!) and prescribed carnitine for my youngest. I

do give them a multivitamin that has no iron. That was very

difficult to find!

I'll post some more of what I've learned later. I have to head out

to school now.

Mindy

> Mindy,

> This is a fascinating insight. Are you a member of the group

> epilepsyresearch ?

>

> My son was considered highly functioning ASD and ADHD. He did test

low

> for cystiene. His seizures are controlled now using the modified

> version of the Atkins Diet that s Hopkins is doing.

>

>

[Guest guest]

I've been taking Lexapro 10 milligrams for 2 1/2 months and want to

stop taking it because it's been very disappointing and I've had more

side effects than benefits and jumped on the Internet and got some

really scary info and now I'm terrified of withdrawal. I called my dr.

yesterday and he said to cut down and I'm now going to take 5 mil for a

week and then next week cut that in half, and so on. In the past I've

suffered from agoraphobia and recently the last year and a half have

been going through some hard family problems, so that's why I started

it.

What were your side effects Grace? Terry

[Guest guest]

Hi Terry,

Thank you so much for your post.

My side effects were drowsiness, headache, mild nausea, spacey feeling

and near panic feelings sometimes and a few sleep problems. It wasn't

horrible, I would characterize it as mild.

Are my side effects an indicator of what the withdrawal will be like?

Cheers,

Grace

>

>

> I've been taking Lexapro 10 milligrams for 2 1/2 months and want to

> stop taking it because it's been very disappointing and I've had more

> side effects than benefits and jumped on the Internet and got some

> really scary info and now I'm terrified of withdrawal. I called my

dr.

> yesterday and he said to cut down and I'm now going to take 5 mil for

a

> week and then next week cut that in half, and so on. In the past I've

> suffered from agoraphobia and recently the last year and a half have

> been going through some hard family problems, so that's why I started

> it.

>

> What were your side effects Grace? Terry

>

>

[Guest guest]

Amen Viriginia

Molly : O )

>

> Today I did 56 breaths and yesterday 21.

> I'm receiving grace for yesterday and giving praise

> today. When I am weak, in Him I am strong. He is our

> living hope.

> Virginia

>

>

>

>

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[Guest guest]

-------------- Forwarded Message: --------------

From: " Martha Farace "

To:

Subject: Grace

Date: Sat, 8 Dec 2007 04:02:02 +0000

Dear Mr. Fox,

Thank you so for your last note regarding the CPSC. Am happy to give time to

help in the classrooms with these, if some request help. We continue to

evaluate our things here at home, on what seems like a daily awakening to

potential harmful deficits.

Since Mother's Day I have known that Luke is struggling with heavy loads of

Mercury and Lead. The test results came earlier that week, and Jeff did not want

me to know until after Mother's Day. The heavy metal, known neurotoxins came to

be in Luke through vaccines and toys. How grievous for our nation that so very

many children are affected. We as a nation are affected. We began chelating

very, very slowly mid-summer after much research, which actually has been

on-going with the autism for years now, and with a Defeat Autism Now!

practitioner who leads the nation, if not the world, in recovering from autism.

The beginning of the increased population of those suffering from autism turn 18

in the next couple to three years. The beginning of the increased population.

The current guesstimate of per individual living cost of those who cannot

support themselves is literally millions, as I said per individual. Our social

systems will fail ever more vibrantly under the lack of regard and recovery that

marks our current acknowledgement of these issues, in large part by the

pharmaceutical industry, the insurance industry, and their well-financed and

powerful lobbies influencing those who hold office.

Chelating is sometimes done through the skin. If chelating of these toxins is

achieved through the skin, then it makes sense in the reverse to remove, as much

as we are capable, the toxins presenting on the skin. Purchasing clothing and

bedding that does not contain formaldehyde, pesticides, and other harmful

chemicals makes sense. Our children go to Salisbury Christian School, and we are

very blest. Having to combat the vaccine issue, and clothing issues, is truly

challenging. The dietary component is somewhat easier, having done parts of that

for eighteen years now. Reading in Ephesians and Philippians this morn, the

Lord brought forward that we share in God's grace. How clearly we share in His

Grace. Our little son who could not speak, at times could not walk, had diarrhea

for over a year, screamed, head-banged, perseverated, and stimmed is so

recovered as to enter kindergarten on time, with no aide, in a typical school

setting. Are we not to share the Joy of recovery with others who are suffering?

Are we not to share the Hope? Are we not to share the unseen harm being done to

those who struggle with similar autoimmune issues that are affected in every

school population that I know of in the United States? ADD, ADHD, asthma, etc.?

The recovery pieces are the same for these issues, with each individual needing

a reduction of the chemicals that are harming them. Please pray, Mr. Fox. This

pandemic is hitting our nation. It is possible to give our children recovery

from so much, and yet, even in the Christian community heads are turned to the

comfortable.

Peace, yes, comfort - not exactly a word picture of Christ's walk, is it?

Your message was timely in the Lord, and I am grateful.

Love to you and your family,

m

" He gives strength to the weary and increases the power of the weak. Even

youths grow tired and weary, and young men stumble and fall; but those who hope

in the Lord will renew their strength. They will soar on wings like eagles;

they will run and not grow weary, they will walk and not be faint. " Is. 40:

29-31

Martha Farace, Founder

www.andSam.org<http://www.davidandsam.org/>

Daresay Autism: Very Integrated Directions; and Similar Autoimmune

Manifestations

also known as the

Autism and Lyme Conference of the East Coast, Inc.

Praying for, and providing HOPE for, the sufferers of autism and Lyme.

[Guest guest]

Grace. If you have PBC now then it would have been in your system

always.just didn't show up in any blood work. All, they can do is test

after a person has symptoms for liver disease.then they test for which

type.AIH, PBC, PSC, Hep C.etc. I remember that before transplant I

took Vitamin E capsules and along with that Evening Primrose as both

are good for our skin. I took hoping it would ease the itching. Many

PBCers take the Evening Primrose just for that. I off and on will add

Vit E capsules to my regime but don't bother with daily anymore. Now.I

just take a Centrum Silver. I read a study that said that people who

took a daily multiple vitamin with minerals lived longer..........so

now I take themand so dopes my husband. Blessings, Joanne

[Guest guest]

FYI - I am using plain text.

ok - so if I am understanding you correctly - that means that I was born with

PBC in my DNA and nothing anyone did or did not do along the way would change

the outcome of me finding out I have PBC now, right?

The reason I ask is 7-8 yrs ago when I had my gallbladder packed to the brim

full with stones taken out - to supposedly help reduce my lab liver levels

(GGTP/alkaline Phosphatase, AST, ALT) - the surgeon was supposed to do a liver

biopsy at the same time and for what ever reason he decided not perform it and

then my surgery report never got sent to Dr. Lemon by the hospital - Dr Lemon is

my gastroenterologist who had requested the gallbladder removal and the liver

biopsy by the surgeon.

Therefore I did not get followed up by anyone except my Internal Med MD who

continued to take lab levels thinking I had a fatty liver ( He knew nothing

about PBC and had never had a patient with PBC before) - and he finally due to

my Alk Phos, AST & ALT being 8 - 10 x's above normal - in 3/2008 told me he

wanted me to go back to Dr Lemon again to have him check me out and that is when

he re-did the PBC labwork which at this point was high positive. And he then

insisted I go in for the liver biopsy immediately. ie: the PBC diagnosis was

written as " Changes most consistent with PBC " - No stage was given - so I

classified myself as Stg 0/1

Grace

Amazingrace ~ How Sweet the Sound!

[Guest guest]

Oh, Jane, I can feel your pain through your writing.  I am sooo sorry.  Sending prayers for Grace and you. 

, Mommy to Todd

 

[Guest guest]

Thank you . JaneFrom: D <dew.writes@...>infantile scoliosis treatment Sent: Fri, May 28, 2010 8:57:38 PMSubject: Re: Grace

Oh, Jane, I can feel your pain through your writing. I am sooo sorry. Sending prayers for Grace and you.

, Mommy to Todd

[Guest guest]

Jane,

I am holding back tears for you right now as I read this. I can truly feel your frustrations through your post. I am so sorry you are having to go through this. That was a lot to take in yesterday and discover. I hope you are feeling better today.

We are not in the circumstance, but I know the way you are feeling from thinking things are going pretty well to finding out they are not. I experienced that just recently with . His condition is totally different than Grace's, but as a Mom I was devasted.

I just wanted you to know I am thinking about you and praying this morning for the whole situation. ((HUGS))

BTW I have found the brace has always been tighter than the cast for . He seems to deal with it, like Grace, after a few minutes. And here is a secret......shhhh....when he says it is too tight.......I undo the velcro just so he can hear the noise. I then attach it right back where it was. This works "most" times.

Thanks for updating us and please keep us posted. TashaMommy of 5 year old twin boys- and Fort Worth, Texas is treated at Texas ish Rite Hospital in Dallas, TexasSeries of 6 casts for 14 months followed by bracing since September 2007You can read 's story at.... http://www.infantilescoliosis.org/stories.html

From: Jane Bigler <janemhar@...>infantile scoliosis treatment Sent: Fri, May 28, 2010 10:40:09 PMSubject: Grace

Oh my, where to begin...

I was very positive and upbeat going to today's appt. I was excited to know that we were going to be cast-free. That all came crashing down at the end of our journey today.

Up to this point, this is what we knew (or was told), Grace's curve was around 50* before surgery, following surgery her curve was about 40* when she was casted 6 weeks post-op. When she received cast #4 (5 weeks ago) our doctor said she was below 10* and since she is fused at 5* (T8 and T9) that is pretty much our "perfect". Today he said she was at 40 BEFORE surgery, and she has only had about a 50% correction from that. She is down to around 20*. But I am so confused, I don't know if that is the angle AT the location where the hemi was, or each of her compensatory curves.

So....

We go in today, get her cast off, have her brace fitted, go in for x-rays, and on to see Dr. D. (All this took about 2 hours) I knew something was up when Dr. D. walked in the room. I immediately asked if we could see her x-rays, but before he could pull them up, I also asked about her bladder issue and wanted him to be in the loop for what we were doing. I also wanted his opinion if he was 100% sure she didn't have a tethered cord. He immediately moved into, "of course she doesn't, I wouldn't have done her surgery..." I assured him I wasn't looking to blame, I just needed to know. So he went out and spent a long time looking at her MRI and even had her other doctor fax over the results again of her initial MRI, somehow their original copy had become corrupt. In the meanwhile, I asked again to see the x-ray. He showed me and it was everything I could do to keep from breaking down crying. It

was very obvious that her back was NOT 10* or less. I was devastated. He then admitted he isn't happy with her progression, but isn't real positive that we're going to get much more correction. He agrees that allowing her some freedom for summer is where he would go with any of his kids and considering the additional testing regarding her bladder, it will make the scheduling of that easier. He said according to what he's reading and seeing, Grace does NOT have a tethered cord, but, she was SO small when she had the MRI, it could be that it just didn't show up. He also agreed he would be concerned at this point about her bladder and her not being able to go on the toilet. He said waiting until August or September for her urodynamic test is out of the question. She needs that test as soon as possible. She also needs to be seen by a neurosurgeon as soon as possible to rule out anything neurological causing

her bladder issues and suspects that they will do another MRI using contrast (apparently he said she was too young with her other ones to use contrast, which I didn't know there was an age limit).

When I asked what was next regarding her spine, he said we are back to wait and see kind of. He knows it will get worse if we do nothing, but he's also not convinced that casting or bracing is going to give her full correction. At one point he said she would need to wear a cast or brace indefinitely. I freaked, and said "you mean forever?" He rescinded that, but never did clarify how long it would be, but no end in sight at this point. He also implied that she may need additional surgery down the road. He wouldn't elaborate on it and said we'd talk about that when the time came. It drove me crazy. I wanted to know! He did say he hopes to not have to go down that road, which could only mean rods or fusion.

I'm at a loss for what to do. Her poor skin and body needs the break, I know this is best for now. But her brace is SO tight. I totally believe it is way tighter than her casts ever were. She's ok with it once she wears it for about 10 minutes, but i can't change her pull-up with it on. So I have to take it off anytime we change her. There is a tummy cut out, but her tummy is already totally protruded when her tummy is empty.

I want to scream, yell, get mad, freak out, you name it. But I'm sitting her numb and unable to really do any of it.

Jane

[Guest guest]

Jane,I imagine you go to SLC. Dr. D and Mike have given me the run around several times there. Last time we were there we were getting so many different numbers and when I confronted Dr. D he got a little upset with me and said I am focusing too much on the numbers and I should just focus on what we are seeing. Well if the numbers are not good then I would think the correction is not good. i am so sorry all of this is happening and I think I would be just like you said, numb. I will be praying for little Grace and you. Beth RettingerMother of In Third Cast From SLCFrom: Jane Bigler <janemhar@...>Subject: Graceinfantile scoliosis treatment Date: Friday, May 28, 2010, 11:40 PM

Oh my, where to begin...I was very positive and upbeat going to today's appt. I was excited to know that we were going to be cast-free. That all came crashing down at the end of our journey today.Up to this point, this is what we knew (or was told), Grace's curve was around 50* before surgery, following surgery her curve was about 40* when she was casted 6 weeks post-op. When she received cast #4 (5 weeks ago) our doctor said she was below 10* and since she is fused at 5* (T8 and T9) that is pretty much our "perfect". Today he said she was at 40 BEFORE surgery, and she has only had about a 50% correction from that. She is down to around 20*. But I am so confused, I don't know if that is the angle AT

the location where the hemi was, or each of her compensatory curves.So....We go in today, get her cast off, have her brace fitted, go in for x-rays, and on to see Dr. D. (All this took about 2 hours) I knew something was up when Dr. D. walked in the room. I immediately asked if we could see her x-rays, but before he could pull them up, I also asked about her bladder issue and wanted him to be in the loop for what we were doing. I also wanted his opinion if he was 100% sure she didn't have a tethered cord. He immediately moved into, "of course she doesn't, I wouldn't have done her surgery..." I assured him I wasn't looking to blame, I just needed to know. So he went out and spent a long time looking at her MRI and even had her other doctor fax over the results again of her initial MRI, somehow their original copy had become corrupt. In the meanwhile, I

asked again to see the x-ray. He showed me and it was everything I could do to keep from breaking down crying. It was very obvious that her back was NOT 10* or less. I was devastated. He then admitted he isn't happy with her progression, but isn't real positive that we're going to get much more correction. He agrees that allowing her some freedom for summer is where he would go with any of his kids and considering the additional testing regarding her bladder, it will make the scheduling of that easier. He said according to what he's reading and seeing, Grace does NOT have a tethered cord, but, she was SO small when she had the MRI, it could be that it just didn't show up. He also agreed he would be concerned at this point about her bladder and her not being able to go on the toilet. He said waiting until August or September for her urodynamic test is out of the question. She needs that test as soon

as possible. She also needs to be seen by a neurosurgeon as soon as possible to rule out anything neurological causing her bladder issues and suspects that they will do another MRI using contrast (apparently he said she was too young with her other ones to use contrast, which I didn't know there was an age limit).When I asked what was next regarding her spine, he said we are back to wait and see kind of. He knows it will get worse if we do nothing, but he's also not convinced that casting or bracing is going to give her full correction. At one point he said she would need to wear a cast or brace indefinitely. I freaked, and said "you mean forever?" He rescinded that, but never did clarify how long it would be, but no end in sight at this point. He also implied that she may need additional surgery down the road. He wouldn't elaborate on it and said we'd talk about that when the time

came. It drove me crazy. I wanted to know! He did say he hopes to not have to go down that road, which could only mean rods or fusion. :(I'm at a loss for what to do. Her poor skin and body needs the break, I know this is best for now. But her brace is SO tight. I totally believe it is way tighter than her casts ever were. She's ok with it once she wears it for about 10 minutes, but i can't change her pull-up with it on. So I have to take it off anytime we change her. There is a tummy cut out, but her tummy is already totally protruded when her tummy is empty. I want to scream, yell, get mad, freak out, you name it. But I'm sitting her numb and unable to really do any of it. Jane

[Guest guest]

Oh Jane, I am soo sorry for the news you received yesterday. I will be praying for you!! and JimmyMommy and daddy to Grace, 10, Tryston, 5Drue, 1, out of cast #213* out of cast, down from 26*, started at 40*In first braceSt. Louis Shriners Hospital

From: Jane Bigler <janemhar (DOT) com>Subject: [infantile_scoliosi s] Graceinfantile scoliosis treatment @groups. comDate: Friday, May 28, 2010, 11:40 PM

Oh my, where to begin...

I was very positive and upbeat going to today's appt. I was excited to know that we were going to be cast-free. That all came crashing down at the end of our journey today.

Up to this point, this is what we knew (or was told), Grace's curve was around 50* before surgery, following surgery her curve was about 40* when she was casted 6 weeks post-op. When she received cast #4 (5 weeks ago) our doctor said she was below 10* and since she is fused at 5* (T8 and T9) that is pretty much our "perfect". Today he said she was at 40 BEFORE surgery, and she has only had about a 50% correction from that. She is down to around 20*. But I am so confused, I don't know if that is the angle AT the location where the hemi was, or each of her compensatory curves.

So....

We go in today, get her cast off, have her brace fitted, go in for x-rays, and on to see Dr. D. (All this took about 2 hours) I knew something was up when Dr. D. walked in the room. I immediately asked if we could see her x-rays, but before he could pull them up, I also asked about her bladder issue and wanted him to be in the loop for what we were doing. I also wanted his opinion if he was 100% sure she didn't have a tethered cord. He immediately moved into, "of course she doesn't, I wouldn't have done her surgery..." I assured him I wasn't looking to blame, I just needed to know. So he went out and spent a long time looking at her MRI and even had her other doctor fax over the results again of her initial MRI, somehow their original copy had become corrupt. In the meanwhile, I asked again to see the x-ray. He showed me and it was everything I could do to keep from breaking down crying. It

was very obvious that her back was NOT 10* or less. I was devastated. He then admitted he isn't happy with her progression, but isn't real positive that we're going to get much more correction. He agrees that allowing her some freedom for summer is where he would go with any of his kids and considering the additional testing regarding her bladder, it will make the scheduling of that easier. He said according to what he's reading and seeing, Grace does NOT have a tethered cord, but, she was SO small when she had the MRI, it could be that it just didn't show up. He also agreed he would be concerned at this point about her bladder and her not being able to go on the toilet. He said waiting until August or September for her urodynamic test is out of the question. She needs that test as soon as possible. She also needs to be seen by a neurosurgeon as soon as possible to rule out anything neurological causing

her bladder issues and suspects that they will do another MRI using contrast (apparently he said she was too young with her other ones to use contrast, which I didn't know there was an age limit).

When I asked what was next regarding her spine, he said we are back to wait and see kind of. He knows it will get worse if we do nothing, but he's also not convinced that casting or bracing is going to give her full correction. At one point he said she would need to wear a cast or brace indefinitely. I freaked, and said "you mean forever?" He rescinded that, but never did clarify how long it would be, but no end in sight at this point. He also implied that she may need additional surgery down the road. He wouldn't elaborate on it and said we'd talk about that when the time came. It drove me crazy. I wanted to know! He did say he hopes to not have to go down that road, which could only mean rods or fusion.

I'm at a loss for what to do. Her poor skin and body needs the break, I know this is best for now. But her brace is SO tight. I totally believe it is way tighter than her casts ever were. She's ok with it once she wears it for about 10 minutes, but i can't change her pull-up with it on. So I have to take it off anytime we change her. There is a tummy cut out, but her tummy is already totally protruded when her tummy is empty.

I want to scream, yell, get mad, freak out, you name it. But I'm sitting her numb and unable to really do any of it.

Jane

[Guest guest]

Oh Jane, I am soo sorry for the news you received yesterday. I will be praying for you!! and JimmyMommy and daddy to Grace, 10, Tryston, 5Drue, 1, out of cast #213* out of cast, down from 26*, started at 40*In first braceSt. Louis Shriners Hospital

From: Jane Bigler <janemhar (DOT) com>Subject: [infantile_scoliosi s] Graceinfantile scoliosis treatment @groups. comDate: Friday, May 28, 2010, 11:40 PM

Oh my, where to begin...

I was very positive and upbeat going to today's appt. I was excited to know that we were going to be cast-free. That all came crashing down at the end of our journey today.

Up to this point, this is what we knew (or was told), Grace's curve was around 50* before surgery, following surgery her curve was about 40* when she was casted 6 weeks post-op. When she received cast #4 (5 weeks ago) our doctor said she was below 10* and since she is fused at 5* (T8 and T9) that is pretty much our "perfect". Today he said she was at 40 BEFORE surgery, and she has only had about a 50% correction from that. She is down to around 20*. But I am so confused, I don't know if that is the angle AT the location where the hemi was, or each of her compensatory curves.

So....

We go in today, get her cast off, have her brace fitted, go in for x-rays, and on to see Dr. D. (All this took about 2 hours) I knew something was up when Dr. D. walked in the room. I immediately asked if we could see her x-rays, but before he could pull them up, I also asked about her bladder issue and wanted him to be in the loop for what we were doing. I also wanted his opinion if he was 100% sure she didn't have a tethered cord. He immediately moved into, "of course she doesn't, I wouldn't have done her surgery..." I assured him I wasn't looking to blame, I just needed to know. So he went out and spent a long time looking at her MRI and even had her other doctor fax over the results again of her initial MRI, somehow their original copy had become corrupt. In the meanwhile, I asked again to see the x-ray. He showed me and it was everything I could do to keep from breaking down crying. It

was very obvious that her back was NOT 10* or less. I was devastated. He then admitted he isn't happy with her progression, but isn't real positive that we're going to get much more correction. He agrees that allowing her some freedom for summer is where he would go with any of his kids and considering the additional testing regarding her bladder, it will make the scheduling of that easier. He said according to what he's reading and seeing, Grace does NOT have a tethered cord, but, she was SO small when she had the MRI, it could be that it just didn't show up. He also agreed he would be concerned at this point about her bladder and her not being able to go on the toilet. He said waiting until August or September for her urodynamic test is out of the question. She needs that test as soon as possible. She also needs to be seen by a neurosurgeon as soon as possible to rule out anything neurological causing

her bladder issues and suspects that they will do another MRI using contrast (apparently he said she was too young with her other ones to use contrast, which I didn't know there was an age limit).

When I asked what was next regarding her spine, he said we are back to wait and see kind of. He knows it will get worse if we do nothing, but he's also not convinced that casting or bracing is going to give her full correction. At one point he said she would need to wear a cast or brace indefinitely. I freaked, and said "you mean forever?" He rescinded that, but never did clarify how long it would be, but no end in sight at this point. He also implied that she may need additional surgery down the road. He wouldn't elaborate on it and said we'd talk about that when the time came. It drove me crazy. I wanted to know! He did say he hopes to not have to go down that road, which could only mean rods or fusion.

I'm at a loss for what to do. Her poor skin and body needs the break, I know this is best for now. But her brace is SO tight. I totally believe it is way tighter than her casts ever were. She's ok with it once she wears it for about 10 minutes, but i can't change her pull-up with it on. So I have to take it off anytime we change her. There is a tummy cut out, but her tummy is already totally protruded when her tummy is empty.

I want to scream, yell, get mad, freak out, you name it. But I'm sitting her numb and unable to really do any of it.

Jane

[Guest guest]

Oh Jane, I am SOOO sorry. I feel your pain and anger and frustration. It seems like you are getting conflicting information. I think sometimes the Drs don't say too much b/c they truly don't know what is in store for our kids in the future. Anything could happen and every child is different. First of all, at least you will get some help getting her bladder checked ASAP. I know you were frustrated about having to wait, so maybe your Dr D can help get you in sooner for that. About the brace being tight... Hayden's is SO tight too and it seems even tighter than the cast I think too. But I feel that the tighter the better, than maybe it will help correct a little or at least hold like the cast was doing. Try not to look to far into the future and rack your brain with what ifs. I would focus now on getting to the bottom of her bladder issues, then you can maybe have some peace of mind and move forward. We are in the

same boat. Hayden will need surgery somewhere down the line as well and in the meantime, he has to wear either a brace or cast until he is old enough for surgery. Try to take it one day at a time and one "issue" at a time. Sorry about all your bad news. Try to enjoy your sweet girl and give her lots of baths and hugs. That is what we do. Joanmom to Hayden 339 degrees down from 62After 4 casts, now in a brace 23 hours/dayTreated at ish Rite Hospital Dallas, TX

From: Jane Bigler <janemhar@...>infantile scoliosis treatment Sent: Fri, May 28, 2010 10:40:09 PMSubject: Grace

Oh my, where to begin...

I was very positive and upbeat going to today's appt. I was excited to know that we were going to be cast-free. That all came crashing down at the end of our journey today.

Up to this point, this is what we knew (or was told), Grace's curve was around 50* before surgery, following surgery her curve was about 40* when she was casted 6 weeks post-op. When she received cast #4 (5 weeks ago) our doctor said she was below 10* and since she is fused at 5* (T8 and T9) that is pretty much our "perfect". Today he said she was at 40 BEFORE surgery, and she has only had about a 50% correction from that. She is down to around 20*. But I am so confused, I don't know if that is the angle AT the location where the hemi was, or each of her compensatory curves.

So....

We go in today, get her cast off, have her brace fitted, go in for x-rays, and on to see Dr. D. (All this took about 2 hours) I knew something was up when Dr. D. walked in the room. I immediately asked if we could see her x-rays, but before he could pull them up, I also asked about her bladder issue and wanted him to be in the loop for what we were doing. I also wanted his opinion if he was 100% sure she didn't have a tethered cord. He immediately moved into, "of course she doesn't, I wouldn't have done her surgery..." I assured him I wasn't looking to blame, I just needed to know. So he went out and spent a long time looking at her MRI and even had her other doctor fax over the results again of her initial MRI, somehow their original copy had become corrupt. In the meanwhile, I asked again to see the x-ray. He showed me and it was everything I could do to keep from breaking down crying. It

was very obvious that her back was NOT 10* or less. I was devastated. He then admitted he isn't happy with her progression, but isn't real positive that we're going to get much more correction. He agrees that allowing her some freedom for summer is where he would go with any of his kids and considering the additional testing regarding her bladder, it will make the scheduling of that easier. He said according to what he's reading and seeing, Grace does NOT have a tethered cord, but, she was SO small when she had the MRI, it could be that it just didn't show up. He also agreed he would be concerned at this point about her bladder and her not being able to go on the toilet. He said waiting until August or September for her urodynamic test is out of the question. She needs that test as soon as possible. She also needs to be seen by a neurosurgeon as soon as possible to rule out anything neurological causing

her bladder issues and suspects that they will do another MRI using contrast (apparently he said she was too young with her other ones to use contrast, which I didn't know there was an age limit).

When I asked what was next regarding her spine, he said we are back to wait and see kind of. He knows it will get worse if we do nothing, but he's also not convinced that casting or bracing is going to give her full correction. At one point he said she would need to wear a cast or brace indefinitely. I freaked, and said "you mean forever?" He rescinded that, but never did clarify how long it would be, but no end in sight at this point. He also implied that she may need additional surgery down the road. He wouldn't elaborate on it and said we'd talk about that when the time came. It drove me crazy. I wanted to know! He did say he hopes to not have to go down that road, which could only mean rods or fusion.

I'm at a loss for what to do. Her poor skin and body needs the break, I know this is best for now. But her brace is SO tight. I totally believe it is way tighter than her casts ever were. She's ok with it once she wears it for about 10 minutes, but i can't change her pull-up with it on. So I have to take it off anytime we change her. There is a tummy cut out, but her tummy is already totally protruded when her tummy is empty.

I want to scream, yell, get mad, freak out, you name it. But I'm sitting her numb and unable to really do any of it.

Jane