ZOE

[Guest guest]

Hi Esther,

Thank you for sharing Zoe's story. My 7 year old

daughter Kylie, had growing rods that sound exactly

like the ones Zoe has. Kylie had them for 2 1/2

years, then we had to have them removed because she

developed kyphosis above the rods. Her docter was

unable to implant the top of the rods any higher up

the spine because the kyphosis curve was so

bad(95degrees) and was almost getting up into the

cervical area. Kylie has had many different treatments

to control her scoliosis. She has had many braces

(TLSO), plaster casts with neck support, 2 Halo

tractions, growth rods, and now a brace with neck

support.

Kylie was born with Idiopathic Infantile Scoliosis and

Developmental Hip Dysplasia, due to the positioning in

utero.

It sounds like Kylie and Zoe have a lot in common.

Kylie didn't walk until she was 3, she doesn't crawl

well, fatigues quickly, falls when she tires, very

easily knocked down, and she wears AFO's too! Kylie

is in 2nd grade and takes a " bugsey " walker with her

to help when her legs get tired and so she has a

barrier around her to help prevent falling if bumped.

She is average height for her age, but severely

underweight. She weighs barely 30lbs.(on a good day)

We also just found out that she has a suspected mucsle

disorder(myopathy), but no diagnosis as of yet.

I would love to talk to you more about Zoe. I can't

get over how similar our daughters are! I have never

found anyone to have so many things, medically, in

common with Kylie.

Talk soon,

,(mom to Kylie)

--- Esther Foss <esther@...> wrote:

> Hello Deborah,

>

> Well, we’re finally back on line after serious

> equipment failure.

>

> Prior to surgery, Zoë had about an 85 degree

> thoracic curve and about a

> 55 degree lumbar curve – very ugly. The thoracic

> curve increased about

> 20 degrees in six months. Prior to that we had her

> in a soft TLSO. The

> rapid curve increase in such a short time was our

> impetus to go for the

> surgery which I had delayed a year researching

> alternative therapies and

> approaches including the halo method and casting.

> Our surgeon at

> Portland Shriners, as well as our research, led us

> to surgery as the

> most effective method for controlling Zoë’s

> curvature. As I mentioned

> in an earlier email, I wish I had had access to this

> site – might have

> changed my mind.

>

> The ISOLA rod system is a set of rods, one on each

> side of the spine,

> anchored at fused vertebrae at the bottom with

> screws and hooked at the

> top to fused vertebrae. Technically, the advantage

> of this system is

> that it can accommodate spine growth until a fixed

> rod is inserted near

> the end of one’s spine growth. Every six months,

> screws are accessed

> through an incision towards the center of the rods

> and the rods

> telegraph apart to accommodate any spine growth

> during that period.

> Typically, a surgeon will get 1-2 centimeters of

> growth with each

> extension. The initially surgery is long, about 8

> hours, and the bulk

> of the recovery takes about a week for wee ones like

> our Zoë. The

> extension surgery takes about 1-2 hours (mostly prep

> time) and the

> recovery is hours for robust children and about a

> day for Zoë. Zoë is

> expected to have these extensions until she is 9 or

> 10 years old. By

> the way, the rods can be seen through Zoë’s skin and

> I’m not sure if

> this is typical or if it is due to Zoë’s delicate

> body.

>

> The system sounds simple and great but we were fully

> warned and aware of

> problems with the system and the tendency towards

> trouble with

> detachment of the rods. As one surgeon noted, the

> system is “fraught”

> with problems. Zoë has twice gone in for surgery to

> reconnect a

> dislodged rod in the first year and did not receive

> her first extension

> until almost exactly a year after the rods were

> placed. She gained

> about a 45% correction with the initial surgery and

> although it hasn’t

> progressed, her scoliosis is still clearly visible.

> She wears a TLSO,

> partially to protect the rods from jarring and

> bumping, but also to help

> control continued rib deformity, even with the rods.

>

> We have found the TLSO not be helpful for Zoë (only

> daytime wear). Her

> surgeon has mixed feelings about it, prescribes them

> in the hopes that

> they do something, but has clearly stated that he

> also finds them not

> particularly worthwhile and has cited recent

> research that contradict

> their effectiveness, particularly once the curve

> progresses beyond 40

> degrees. We use it because we feel Zoë needs

> whatever help she can

> receive.

>

> By the way, Zoë has some underlying situation that

> is most likely the

> cause of her scoliosis. We have no diagnosis to

> date, but have run the

> gamete of tests, starting with mitochondrial

> disorders, spinal muscle

> atrophy, Prader Willi, through a series of suspected

> muscle disorders

> and now wondering if a connective tissue disorder

> (Ehlers Danlos, type

> VI was highly suspected) may be the culprit. All

> genetic tests have

> been normal, even though Zoë’s symptoms very neatly

> fit many, many of

> these disorders’ profiles. I would say that the

> outstanding sign for

> Zoë is her very depressed muscle tone and strength.

> Her geneticists

> believe her outstanding feature is infantile

> scoliosis. Zoë has always

> been tiny, less than the 3rd percentile for weight

> and now about the 5th

> percentile for height (both Steve, her Dad, and I

> are 5’-9”). She is

> very delicate and her joints easily hyperextend.

> She wears AFO’s for

> very weak ankles. She has extremely fine skin, the

> kind every model in

> the world thinks she wants, unusually big eyes, is

> unusually beautiful

> (not just my opinion), and bright. Zoë did not walk

> until she was three

> and crawling is still very hard for her. She

> fatigues quickly on walks

> and falls when she tires. She can be fairly

> unstable on her feet and is

> easily knocked down, but has learned to strike a

> clear path around

> children when she feels unsafe.

>

> As for alternative therapies, I haven’t found

> anything that is

> effective. I did extensive research, even looking

> at foreign programs

> that cited spectacular cures, but found that none

> provided such claims

> once the curvature progressed beyond about 20-30

> degrees. I have used

> the Feldenkrais method quite a bit for Zoë when she

> was younger but

> found I introduced it too late and not nearly with

> the intensity needed

> for it to be effective. I believe the Feldenkrais

> method to be highly

> effective for all sorts of movement difficulties and

> controlling

> scoliosis at lower curves, but after about 30

> degrees, even ardent

> practitioners admit it isn’t very effective. I have

> anticipated some

> serious joint and spine pain for Zoë as she ages and

> believes the

> Feldenkrais method will help her move more easily

> and in less pain. I

> am in the third year of a four year professional

> Feldenkrais training

> program so that she and I can practice together,

> making it part of her

> daily routine.

>

> In my experience, watching our daughter’s rapid

> progression, my advice

> is to be extremely pro-active, ask a lot of

> questions, and submit to

> non-surgical methods promptly. The ill effect of

> bracing and casting is

> minimal compared to the daunting prospects of

> continual surgical

> procedures.

>

> Please feel free to ask more questions. Our path

> with our daughter is

> quite different than many parents on this site, but

> we really all have

> common concerns. It’s also nice to know that I can

> communicate with

> other parents with similar concerns without boring

> my very sympathetic,

> but not quite fully comprehending friends.

>

> Esther

> (We’re in Eugene, Oregon. Anyone else out there

> from Oregon, California

> or southern Washington State?)

>

>

>

> Re: question

>

> Dear Esther,

>

> Can you please tell me how severe Zoe's

> scoliosis was before you

> scheduled surgery? And what is the ISOLA rods? My

> daughter is 5 too

>

=== message truncated ===

__________________________________________________

[Guest guest]

Hello ,

It's frightening how similar Kylie and Zoë characteristics match. This

is a first for us too.

I'd love to share more details and compare our experiences. While the

scoliosis issue looms large for us, the whole processes of diagnosing

and treatment has been daunting and every MD and Specialist we've seen

to date has been mystified by Zoë's situation.

We're out of town for two weeks for my Feldenkrais training. Could you

please send me your phone number via my personal email

(esther@...) so that we can talk in detail and communicate our

specific concerns off the group discussions? I have tons of questions

and notes to compare that are not related to scoliosis.

Let's communicate in detail after my return on May 17th.

Regards,

Esther

Re: question

>

> Dear Esther,

>

> Can you please tell me how severe Zoe's

> scoliosis was before you

> scheduled surgery? And what is the ISOLA rods? My

> daughter is 5 too

>

=== message truncated ===

__________________________________________________

[Guest guest]

Yes, Marsha, I did get your email and read it with interest -- both because it is about you and because it includes your data about the iodine skin patch. Sounds like you noticed a significant change in just one week. Congratulations on trusting yourself!!!

Thanks for keeping us all posted on how it is going. Have you mentioned anything to your doctor?

Zoe

Zoe

Hi Zoe,

Did you get my email about my last iodine skin patch? I have been on Iodoral for a week. My skin test before Iodoral disappeared in less than eight hours this weekend disappeared in 13 1/2 hours. I am staying on this dose since I have just started Armour so I will another test next weekend and maybe increase one pill.

Just thought I would let you know and thank you for suggesting Iodoral and mainly bringing it to my attention!

Marsha Oh did two miles on the treadmill in thirty min. today!!!

Relax. virus scanning helps detect nasty viruses!

[Guest guest]

No I am breaking him in slowly, don't want to scare the prescribing Armour doctor away. (Sorry could not resist) Armour is working. Thank you Zoe MarshaZoe & <ZOEA@...> wrote: Yes, Marsha, I did get your email and read it with interest -- both because it is about you and because it includes your data about the iodine skin patch. Sounds like you noticed a significant change in just one week. Congratulations on trusting yourself!!! Thanks for keeping us all posted on how it is going. Have you mentioned anything to your doctor? Zoe Zoe Hi Zoe, Did you get my email about my last iodine skin patch? I have been on Iodoral for a week. My skin test before Iodoral disappeared in less than eight hours this weekend disappeared in

13 1/2 hours. I am staying on this dose since I have just started Armour so I will another test next weekend and maybe increase one pill. Just thought I would let you know and thank you for suggesting Iodoral and mainly bringing it to my attention! Marsha Oh did two miles on the treadmill in thirty min. today!!! Relax. virus scanning helps detect nasty viruses!

Brings words and photos together (easily) with PhotoMail - it's free and works with .

[Guest guest]

Zoe, I don't have any useful advice (yet - will think about it) but I'm so

sorry, so supportive and so angry on your behalf. The LEA, the costs,

moving away from your support system - it all sucks.

Abigail

[Guest guest]

Hi Zoe:

Thanks so much for your reply. I have been out of town and just saw it.

I am going to read this carefully and see if I can get the tests you are

suggesting

I have no idea who to request them from but I will look into it. You are right

i am puzzled by calcium being such a problem for me. It is ridiculous. no one

in their menopause mind could possible afford to not take calcium. can you

imagine.

I will keep you informed.

thanks a million,

Any info is very apprciated

zoe88025 <Zll51@...> wrote:

Hi ,

Sorry I've been offline for a while so am just seeing your message.

Have you tried taking cod liver oil, and have you had your vitamin D

levels tested? Have you had evaluation of your calcium levels and

your parathyroid glands, parathyroid hormone levels? It is possible

to have low calcium, very low, while also having a normal blood

level. And that could do a number on your seizure threshold. You can

try these google searches for more info too:

" calcium " " seizure threshold "

" vitamin D " " Seizure threshold "

At least now, the connection between seizures and hormone levels is

well recognized, though I don't see that neurologists in general know

what to do about it. Some of the studies on using progesterone some

years ago looked promising. I did find the progesterone cream seemed

to help my " screaming meemies " . Have you looked into it?

This search turned up the followling article and many others:

" progesterone " " menopause " " Seizure threshold "

Gender-Based Differences

Seizure threshold is decreased by estrogen (increased seizure

activity) and increased by progesterone (decreased seizure activity),

presumably caused by ...

http://www.medscape.com/viewarticle/409544_16

Have you looked up hypercalcemia? Do you think this may be a problem

for you?

If you find the greens, cabbage, broccoli, etc. are helping maybe

look more into your methylation cycle, especially since the Bs are

helping too.

" methylation " " seizure

threshold " " methylation " " Homocysteine " " homocysteine " " seizure

threshold " . The folic acid and B12 each help lower homocysteine

levels.

On the search about progesterone, I really didn't like the stuff I

saw from the Epilepsy Foundation; very patronizing, much of the tone

that you should trust " authorities " and doubt your own perceptions

about what is good for you. What you said about being sensitive to

calcium may be a big clue for you. You can't absorb it or phosphorous

properly without adequate vitamin D. Also if there is something

skewering your calcium levels can you get it checked out? At least

you know that the fish and veggies help. I never thought I'd see the

day when I would long for a bowl of freshly steamed broccoli, but

sure enough it happens!

Zoe

>

> Hin Zoe:

> I read your story. I basically have been experimenting and learning

about my own body like you have. I have menopause to add to the list

of variables. Hormones seem to make my brain even more exitable. I

am really puzzled about calcium.

> It really makes my threshold low. and the electrical activity goes

crazy. I don't understand why and I think I could use calcium for my

bones.

> I also cannot do omegas or primerose oil because or flax seed. But

one thing that is a definite winner is eating fish and veggies

daily. And also vit b-50

> Any ideas will be appreciated. I am curios about vit d .

> Thanks,

>

>

---------------------------------

Moody friends. Drama queens. Your life? Nope! - their life, your story.

Play Sims Stories at Games.

[Guest guest]

In message you wrote:

> Hi EveryOne,

>

> Zoe, one of our long time list members, is scheduled to go into the hospital

on Monday morning.

> She has beeb diagnosed with acute lymphatic leukemia. She would be grateful

for your best wishes and prayers.

> All blessings for Zoe, family, and friends.

>

> Peace, Love and Harmony,

Dear Bev,

Thanks for letting me know.

Praying for her and her family!

Blessings to you and your house,

Margret and family :-)

--

+------------------ Minstrel@... --------------------+

http://www.therpc.f9.co.uk/family/scobygrow/home.html

http://bavarianminstrel.wordpress.com

creation.com

Invited or not, God is present!

[Guest guest]

In message you wrote:

> Hi EveryOne,

>

> Zoe, one of our long time list members, is scheduled to go into the hospital

on Monday morning.

> She has beeb diagnosed with acute lymphatic leukemia. She would be grateful

for your best wishes and prayers.

> All blessings for Zoe, family, and friends.

>

> Peace, Love and Harmony,

Dear Bev,

Thanks for letting me know.

Praying for her and her family!

Blessings to you and your house,

Margret and family :-)

--

+------------------ Minstrel@... --------------------+

http://www.therpc.f9.co.uk/family/scobygrow/home.html

http://bavarianminstrel.wordpress.com

creation.com

Invited or not, God is present!

[Guest guest]

Warm blessings and loving energy to Zoe, her family, and the doctors, nurses and

other caregivers taking care of her during this time.

Warmly,

Velma

To: To-Your-Health ; original_kombucha

From: OM@...

Date: Sat, 11 Dec 2010 09:39:30 -0500

Subject: Zoe

Hi EveryOne,

Zoe, one of our long time list members, is scheduled to go into the hospital on

Monday morning.

She has beeb diagnosed with acute lymphatic leukemia. She would be grateful for

your best wishes and prayers.

All blessings for Zoe, family, and friends.

Peace, Love and Harmony,

Bev

[Guest guest]

Dear Zoe! prayers love and light,most healing vibrations sent to You!

tte <>

>

> Hi EveryOne,

>

> Zoe, one of our long time list members, is scheduled to go into the hospital

on Monday morning.

> She has beeb diagnosed with acute lymphatic leukemia. She would be grateful

for your best wishes and prayers.

> All blessings for Zoe, family, and friends.

>

> Peace, Love and Harmony,

> Bev

>

[Guest guest]

Same Here.. Get well fast Zoe .. We all miss you !

Frantz

Subject: Re: Zoe

To: original_kombucha

Date: Sunday, December 12, 2010, 10:58 PM

 

Dear Zoe! prayers love and light,most healing vibrations sent to You!

tte <>

>

> Hi EveryOne,

>

> Zoe, one of our long time list members, is scheduled to go into the hospital

on Monday morning.

> She has beeb diagnosed with acute lymphatic leukemia. She would be grateful

for your best wishes and prayers.

> All blessings for Zoe, family, and friends.

>

> Peace, Love and Harmony,

> Bev