Re: Digest Number 323

[Guest guest]

How about baked oatmeal? I love it that way. I eat it on Sundays and am

currently trying to find a recipe that will work with BFL. It's

wonderful stuff except it has sugar in it. I thought maybe equal or

sweet N low. Any ideas guys?

ERICKA

P.S. If you want the original recipe email me at ericka5@...

[Guest guest]

Pat,

I would go ahead and get the PCR done. I think you and I started treatment

right around the same time. I had my PCR done at 3 months and I was

undetectable. I will continue for a year this time. I am genotype 1a.

This is my second try at combo treatment. I relapsed after the first try of

6 month treatment. If there is any chance you are undetectable you do not

want them to pull you off too soon and have to go through this again. (I

know) If there is any possibility you can be cured you want to go for it

now fighting doctors all the way if necessary. I switched my primary and

hepatologist and am currently in the process of switching from HMO. Good

luck.

Beth

[Guest guest]

Pat,

I would go ahead and get the PCR done. I think you and I started treatment

right around the same time. I had my PCR done at 3 months and I was

undetectable. I will continue for a year this time. I am genotype 1a.

This is my second try at combo treatment. I relapsed after the first try of

6 month treatment. If there is any chance you are undetectable you do not

want them to pull you off too soon and have to go through this again. (I

know) If there is any possibility you can be cured you want to go for it

now fighting doctors all the way if necessary. I switched my primary and

hepatologist and am currently in the process of switching from HMO. Good

luck.

Beth

[Guest guest]

In a message dated 2/9/01 9:34:59 AM, writes:

<< From: " Ralph & Judi Lowenthal " <lowenthalrj@...>

Subject: RE: Need Help Non DS

Yikes! My mom did her family tree for years when we were young--visits to

courthouses and graveyards and elderly people every weekend. I hate

geneology.

Judi >>

Ahhh things have changed ! it's called the internet !

M...

[Guest guest]

Hi Jeanne, My personnel opinion on how to deal with your son

and preschool is this, you know your son better than anyone,

if he seems to be ready for preschool, I would walk him as

far as the teachers advise, reassure him that you will be

back, and let them take it from there. My own daughter who

was barely 3 when starting preschool did great, she was more

than ready (having older siblings helped) and adjusted very

well. Usually the separation from child/mom is harder on us

(the moms) than the kids:>) If the teachers express that he

is withdrawn, takes a long time to adjust, perhaps he isn't

quite ready to be away from mom yet, or you could try to

stay until he feels more comfortable in his new

surroundings. I would make sure that if you take this route

(staying for awhile) I would make it quite clear to the

teachers that it isn't up for debate, and you want to try to

stay a bit, if that doesn't work, wait a bit longer before

sending him. I do remember having tremendous anxiety about

my " baby " going to school so young. I am glad she went, but

if she hadn't adjusted, I probably would have waited another

year. It might also help if you " visit " the school together

if you can before you initially take him for a regular day,

that way it is a familiar place.

Good Luck to you both, Keep us posted on how he is

doing!

H. mom to 14,

Micheal 13 Apraxia/lowtone, 8 Apraxia. Vermont

[Guest guest]

Just wanted to respond to your emial.My son has days that I call

Sensory Overload Days where he seems to " shut down " . This is very prevalent if

he is getting sick or a cold or has an overly stimulated day.Some days he

just wakes up that way and the Full Moon theory is true with mine. These

days seem fewer then before but they still happen.I was told by the Pediatric

Neurologist and his OT that this is normal and a part of his apraxia.This is

his way of coping with the situation that he is in. They didn't give me a

solution just basically answered my question.Hope this helps. Gretchen

[Guest guest]

Dear Group,

Quick question: My daughter (wears a TLSO 23 hours a day) had an

orthopedist appointment this week. Her in-brace correction has progressed 5

degrees (she's now 23-degrees, without the brace she's 38-degrees, at best

in brace she was 16-degrees). I asked her doctor about her RVAD - and he

said we can't measure it on her because the apex of her curve is so much

lower than her lowest rib.

Does this mean anything in terms of her ability to be casted?? Would

casting be effective?? Do you need to be able to measure an RVAD to cast?

I gave him the video and Dr. Mehta's articles. He seemed willing to read

them but he's not keen on casting (surprise). He said Houston, TX is too

hot - she'd be uncomfortable - SLC, PA, and London get snow - it's easier

for the kids there. He apparently has casted before (though it is unclear

if it is the same as Dr. Mehta's serial casting method).

Does anybody know if I can just call up Dr. and Dr D'Astous and talk

to them about my daughter?

We still have no resolved the issue as to whether or not her spinal cord is

tethered - she's in a huge gray zone with that. However, we have scheduled

some more tests to investigate (I'm not hanging any hopes on getting clear

answers though). Is this a problem?

Any info on how to just cold-call Dr. or Dr. D'Astous would be

greatly appreciated!!!

Robin

[Guest guest]

Hi Robin

I still don't know Siobhan's RVAD, and this is her second cast! So,

I don't think its necessary to have it! Siobhan does have a

Connective Tissue Disorder causing her scoliosis, meaning that it is

progressive, so I didn't think that knowing her RVAD is going to

change anything.

I couriered Siobhan's last 2 x-rays to Dr D'Astous, and sent an

email asking him if she thought she would be a good candidate for

casting, and he replied YES!

Even though with her Connective Tissue Disorder, and the fact that

there is no " cure " for her scoliosis, he was still willing to give

it a shot. I figured that if nothing else, we've bought time (years)

before she'll need any kind of permanent surgery.

Oh, and our " ex " Ortho here, tried to disuade us from casting with

arguments like... " its 50/50 as to whether it will work " and " she

can't bathe and swim " .... These seemed like lame excuses considering

she is currently at 8 DEGREE'S!!!!

Hope that helps.....

Jacki

> Dear Group,

> Quick question: My daughter (wears a TLSO 23 hours a day)

had an

> orthopedist appointment this week. Her in-brace correction has

progressed 5

> degrees (she's now 23-degrees, without the brace she's 38-degrees,

at best

> in brace she was 16-degrees). I asked her doctor about her RVAD -

and he

> said we can't measure it on her because the apex of her curve is

so much

> lower than her lowest rib.

>

> Does this mean anything in terms of her ability to be casted??

Would

> casting be effective?? Do you need to be able to measure an RVAD

to cast?

>

> I gave him the video and Dr. Mehta's articles. He seemed willing

to read

> them but he's not keen on casting (surprise). He said Houston, TX

is too

> hot - she'd be uncomfortable - SLC, PA, and London get snow - it's

easier

> for the kids there. He apparently has casted before (though it is

unclear

> if it is the same as Dr. Mehta's serial casting method).

>

> Does anybody know if I can just call up Dr. and Dr

D'Astous and talk

> to them about my daughter?

>

> We still have no resolved the issue as to whether or not her

spinal cord is

> tethered - she's in a huge gray zone with that. However, we have

scheduled

> some more tests to investigate (I'm not hanging any hopes on

getting clear

> answers though). Is this a problem?

>

> Any info on how to just cold-call Dr. or Dr. D'Astous

would be

> greatly appreciated!!!

>

> Robin

[Guest guest]

Robin,

I would suggest that you send either of these docs 's most recent x-ray, a fact sheet/bio of , a photo, and a letter, so they will feel comfortable commenting on . It has been my experience that until they can see x-rays and concise info on the child, they wont comment.

Shriners Hospitals dont have medical staff direct #'s listed at the reception desk, so patients cant just call up the doc. The best way to get them by phone is through their care coordinators, but send the info first, so they are able to comment.

HRH

[Guest guest]

In a message dated 9/18/04 10:30:56 PM Eastern Daylight Time, RAWnHDG@... writes:

We still have no resolved the issue as to whether or not her spinal cord istethered - she's in a huge gray zone with that. However, we have scheduledsome more tests to investigate (I'm not hanging any hopes on getting clearanswers though). Is this a problem?

Robin, good luck getting to the bottom of this. It is very important to know, both from the standpoint of the scoliosis (tethering would tend to make it worse) and for the function of the bowel and bladder nerves, and eventually the legs themselves. A tether that goes on too long can cause progressive damage to these nerves leading to incontinence, weakness in the legs and atrophy of the muscles, loss of sensation, foot changes (hammertoes, high arches, tightening heel cord), etc.

I'm hoping that you get a clean bill of health for 's spinal cord! My son had a tethered cord which was released at four months of age. If you have any questions, please don't hesitate to ask.

ConnieMom to Sara 12, Nicky 6 (GI issues, megacolon), and 4(CRS/VACTERLS incl. tethered spinal cord (repaired 9/00) perineal fistula imperforate anus (repaired 5/00), single kidney, PDA (closed on its own), malformed sacrum and pelvis, mild long segment levoscoliosis, extra left rib, genital anomalies with hypospadius (repairs 9/00,11/00, 5/01,12/01,12/03), hypoplastic left leg with clubfoot (repaired 5/01) and 4cm length discrepancy - wears AFO and 3cm lift, SUA, GI reflux, DGE, mild swallowing dysphagia, eating issues and the most beautiful smile ever)conni60640@..., http://pages.ivillage.com/conni60640/

[Guest guest]

hi robin,

i was curious when you say that you are uncertain whether or not her

spinal cord is tethered, what do you mean? have they told you the

specific place that it is tethered? for example, my son lucas had a

possible tethered spinal cord detected from the mri due to a fatty or

tight filum (below the point of the true spinal cord) although the

spinal cord ended at the proper location. the neuro said that it was

up to us whether or not to go through the detethering surgery. this

type of detethering surgery is the least invasive that you can have.

the risk from surgery is solely from the anaesthesia. we decided to

go through with it just in case this was attributing at all to the

scoliosis. after the surgery, the neuro told us that it was one of

the tightest filum that he had ever released. boy were we glad that we

decided to go through with it even though they had originally not

pushed us to commit. of course, lucas still has scoliosis, but at

least we are no longer fighting against a tethered spinal cord. just

my 2 cents although you could have another case entirely which is

never cut and dry.

as for calling dr. sanders (lucas' current doctor) -- just go for it.

he is super friendly. he will probably want to see records first

before giving you his opinion so you might want to get that set up at

the same time.

deshea

> Dear Group,

> Quick question: My daughter (wears a TLSO 23 hours a day) had an

> orthopedist appointment this week. Her in-brace correction has

progressed 5

> degrees (she's now 23-degrees, without the brace she's 38-degrees,

at best

> in brace she was 16-degrees). I asked her doctor about her RVAD -

and he

> said we can't measure it on her because the apex of her curve is so much

> lower than her lowest rib.

>

> Does this mean anything in terms of her ability to be casted?? Would

> casting be effective?? Do you need to be able to measure an RVAD to

cast?

>

> I gave him the video and Dr. Mehta's articles. He seemed willing to

read

> them but he's not keen on casting (surprise). He said Houston, TX

is too

> hot - she'd be uncomfortable - SLC, PA, and London get snow - it's

easier

> for the kids there. He apparently has casted before (though it is

unclear

> if it is the same as Dr. Mehta's serial casting method).

>

> Does anybody know if I can just call up Dr. and Dr D'Astous

and talk

> to them about my daughter?

>

> We still have no resolved the issue as to whether or not her spinal

cord is

> tethered - she's in a huge gray zone with that. However, we have

scheduled

> some more tests to investigate (I'm not hanging any hopes on getting

clear

> answers though). Is this a problem?

>

> Any info on how to just cold-call Dr. or Dr. D'Astous would be

> greatly appreciated!!!

>

> Robin

[Guest guest]

Ilja! Congrats!

-way to go on the stairs and down a pants size. Send some of that luck my

way.

I have been super stressed lately but I think I'm getting back into my groove. I

just got promoted and got a huge raise at work (aka I can start paying off a

little bit of my college loans) so thats helping along with some new meds.

Today I did Taebo Power at Lunch, at home I did Tae bo Cardio Bootcamp ( I love

these tapes) and then Did Gunnar 's Core Secrets 25 min workout late in

the evening.

I'm just getting over being sick, so I'm trying to do lower intensity workouts

several times throughout the day.

The Cardio bootcamp set I have came with four tapes.

Cario-by far and away my favorite because it has great energy and a different

setting. Its a bit less than 30 minutes but is more challenging than most basic

taebo workouts. The Bands are used for about 10-15 min of the tape. When

you first get them you think they are a joke because they feel like less

resistance than the bands you might already have, but if you double up on the

arm moves and keep em tight during kicks...you will feel it after your first

workout.

Basic Training-50 minutes and not as easy as his other recent tapes. Traditional

boot camp moves, with taebo moves and the band. Not as moving as the Cardio tape

but stgill interesting because of the bands.

Ultimate-Only have done this once. Not too much harder than basic but definitly

challenging. Wish they could have done this workout outside :-(

All videos have new music written for the tapes, cute and kichey.

Have a great weekend everyone!

a

--

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[Guest guest]

Tracie; I care.....Glad you are doing so much better. I am too. Have not slimmed now in two days. Tonight I had salmon, broccoli and fried squash. Everything went down fine. Of course I took little bitty bites and did the chewing thing. Mornings I have been drinking a slimfast low carb drink and I can get most of that down. It has 20 grams of protien.

I think we are going to make it girl!!!

I hope we get one of those fill centers in our area if that is the way Dr. Dobson's office is going to be. They were nice thoufgh when we were there with our $250. HAHA.

Marie wrote:

[Guest guest]

Hey Group:

My comment about the 'GOD Complex' to Tracey was personal for me and not

meant for any Newbie. I cannot stress enough that " I am an individual and not a

statistic " and so is each and every one of my brother and sister survivors.

As 'queen of the side effects' and so-called 'cheerleader' for the group, I

was diagnosed in 11/03 with over 800,000+ per 1,000,000 +phillies. My diagnosing

doctor gave me 2 months to live. . .Gleevec, which I call my 'gold'; because it

was protocal. . .and an appointment with the Cancer Center in my area.

I went home, didn't inform the family, began to bundle up my life, and began

my pity party.

On 12/18/03, the specialists at the cancer center in my area gave me 2-5

months to live and their statistics on a BMT; which was not an option for me due

to the 15 fatal/terminal diseases that I already had. . .all of which I consider

CHRONIC ILLNESSES.

I came home from the consultation, informed the family and finished my pity

party. Then I armed myself to fight the battle of my life. . . for my life.

I truly know that 'everyday is a Gift from GOD'. I reached 'negative' on the

FISH test on 1/5/05. My 1st RT-PCR result on 12/27/05 of 0.00136 confirms for me

that " Man points . . . GOD Appoints " .

That's why I stress the 'individuality' of our bug as I call CML because

everyone who knows me knows that " I AM A SURVIVOR. . . & . . . I AIN'T FINISHED

YET " ! ! !

Take care, I have all you guys in my prayers.

" K "

" I AIN'T FINISHED YET " !!!

[Guest guest]

Hi Kay,

Can you please explain to me when you were diagnosed what 800,000+ is? Does

that mean your wbc were 800,000? Your Ph were 1,000,000? Were you in chronic

stage? I don't understand but would like to.

Jackie

Re: [ ] Digest Number 323

Hey Group:

My comment about the 'GOD Complex' to Tracey was personal for me and not

meant for any Newbie. I cannot stress enough that " I am an individual and not a

statistic " and so is each and every one of my brother and sister survivors.

As 'queen of the side effects' and so-called 'cheerleader' for the group, I

was diagnosed in 11/03 with over 800,000+ per 1,000,000 +phillies. My diagnosing

doctor gave me 2 months to live. . .Gleevec, which I call my 'gold'; because it

was protocal. . .and an appointment with the Cancer Center in my area.

I went home, didn't inform the family, began to bundle up my life, and began

my pity party.

On 12/18/03, the specialists at the cancer center in my area gave me 2-5

months to live and their statistics on a BMT; which was not an option for me due

to the 15 fatal/terminal diseases that I already had. . .all of which I consider

CHRONIC ILLNESSES.

I came home from the consultation, informed the family and finished my pity

party. Then I armed myself to fight the battle of my life. . . for my life.

I truly know that 'everyday is a Gift from GOD'. I reached 'negative' on the

FISH test on 1/5/05. My 1st RT-PCR result on 12/27/05 of 0.00136 confirms for me

that " Man points . . . GOD Appoints " .

That's why I stress the 'individuality' of our bug as I call CML because

everyone who knows me knows that " I AM A SURVIVOR. . . & . . . I AIN'T FINISHED

YET " ! ! !

Take care, I have all you guys in my prayers.

" K "

" I AIN'T FINISHED YET " !!!