NEED ADVICE

[Guest guest]

I am also concerned about the neck thing with regards to myself, and am

exploring options for the future. I'm all ears on this one.

I would however like to hear *anything* about that joystick from anyone,

as it is the one I am in the process of getting.

I almost can't use a regular stick anymore, and now require something

much touchier.

How did Brett's break?

Thanks,

jeffv

Kristal R. Koehler wrote:

> Bretts has a mini joystick for his power chair and we are very

> unhappy with it as it has broken a couple times. Does anyone have

> any other joystick options for a weak or even a mid type 2? I want to

> trial another type. It is not worth it to have this one if it is so

> dang sensitive that it is going to break all of the time- Brett is

> just heartbroken and is almost scared to get back into his

> powerchair- no matter what I say- so this has been a rough week for

> us.

[Guest guest]

Hi Kristal,

I am Taya, age 35, SMA type II. I am now in the situation as Brett in the sense

that I notice I am losing head control. I can just say in that you are right in

how important it is not to lose the little independence that you still have

left. There is no point in fixing somebody in only one position. It makes such a

difference to be able to turn your head where you want to - it is important for

personal communication, too. I would recommend that you continue researching

the various options for head rests and stuff that are available. Tufty Sue on

this list has created a very inventive system for her - she rests her chin on a

rubber band which is hanging from a bar above her head. I hope she doesn't mind

if I pass on the address of her website with photos:

http://www.tuftysue.pwp.blueyonder.co.uk/photo.htm

In her system, the support comes from the front and not from the back of the

head. Maybe she can explain more.

Taya

Need advice

Hi my name is Kristal and my son Brett has SMA 2 and is almost 5 years old. I

have been on this list for about a year now but don't post very much. I do read

all the e-mails and have learned SO much from all of you guys. I need advice on

a couple things and as always, it is usually best coming fromt hose who have

experienced it.

Bretts has a mini joystick for his power chair and we are very unhappy with it

as it has broken a couple times. Does anyone have any other joystick options

for a weak or even a mid type 2? I want to trial another type. It is not worth

it to have this one if it is so dang sensitive that it is going to break all of

the time- Brett is just heartbroken and is almost scared to get back into his

powerchair- no matter what I say- so this has been a rough week for us.

Also, Brett has a pretty severe " S " curve which they say has progressed into

his neck- has anyone else heard of this happening? Yesterday, Brett did his

final fittings for his new seating system. We were so excited! His old one just

wasn't working out because his left side and shoulder kept collapsing and it

kept leaving marks on him so the company said they should have realized Brett's

complexity in his muscle weakness and put him in a more supportive seating

system. Well, after hours and hours in several fitting sessions- we were having

the same issues- it turns out that because of the severity of Brett's " S " curve

in his back and progressing to his neck- the weight of his head causes the

collapse of the shoulder and left side. The only way to correct the collapse is

to get a neck/ head rest that forces his neck and head straight- we tested one-

it was almost like half of a cast- he would lose ALL independence with neck and

head movement and it would only slow d own his progression not stop it. I can't

do that to him- I just can't do it. So- another question I have- is when spinal

fusion surgery is done- can they correct a curve up into the neck? Or is that

too dangerous? And again I know nothing about this surgery yet as I have not

researched it. This may not seem like much- but it has been a completely

heartbreaking week for me. Any help on anything would be great.

Kristal

Mom to Brett- SMA II- 4 years old

" Life is 10% what happens to you and 90% how you respond to it. " ~anonymous

Visit Brett's website at: http://www.our-sma-angels.com/brett/index.htm

[Guest guest]

I use a touch pad system...I'm not sure it would be easier tho. It took a

little while to get used to, as most things, but I like it very much. Maybe

Brett could try it.

Lori ( ID: amourgarden)

Need advice

Hi my name is Kristal and my son Brett has SMA 2 and is almost 5 years old.

I have been on this list for about a year now but don't post very much. I do

read all the e-mails and have learned SO much from all of you guys. I need

advice on a couple things and as always, it is usually best coming fromt

hose who have experienced it.

Bretts has a mini joystick for his power chair and we are very unhappy with

it as it has broken a couple times. Does anyone have any other joystick

options for a weak or even a mid type 2? I want to trial another type. It is

not worth it to have this one if it is so dang sensitive that it is going to

break all of the time- Brett is just heartbroken and is almost scared to get

back into his powerchair- no matter what I say- so this has been a rough

week for us.

Also, Brett has a pretty severe " S " curve which they say has progressed into

his neck- has anyone else heard of this happening? Yesterday, Brett did his

final fittings for his new seating system. We were so excited! His old one

just wasn't working out because his left side and shoulder kept collapsing

and it kept leaving marks on him so the company said they should have

realized Brett's complexity in his muscle weakness and put him in a more

supportive seating system. Well, after hours and hours in several fitting

sessions- we were having the same issues- it turns out that because of the

severity of Brett's " S " curve in his back and progressing to his neck- the

weight of his head causes the collapse of the shoulder and left side. The

only way to correct the collapse is to get a neck/ head rest that forces his

neck and head straight- we tested one- it was almost like half of a cast- he

would lose ALL independence with neck and head movement and it would only

slow down his pro!

gression not stop it. I can't do that to him- I just can't do it. So-

another question I have- is when spinal fusion surgery is done- can they

correct a curve up into the neck? Or is that too dangerous? And again I know

nothing about this surgery yet as I have not researched it. This may not

seem like much- but it has been a completely heartbreaking week for me. Any

help on anything would be great.

Kristal

Mom to Brett- SMA II- 4 years old

" Life is 10% what happens to you and 90% how you respond to it. " ~anonymous

Visit Brett's website at: http://www.our-sma-angels.com/brett/index.htm

[Guest guest]

Kristal,

Have you tried a TLSO (Torso Brace) for a while? At age 4 I'm guessing

Brett's curve is quite flexible, so a TLSO should help to straighten him

up when he's wearing it. I think that's an easier way to make the

wheelchair seating issue more manageable. Also, it should prolong the

scoliosis progression until a little older age for fusion.

Jay

Need advice

Hi my name is Kristal and my son Brett has SMA 2 and is almost 5 years

old. I have been on this list for about a year now but don't post very

much. I do read all the e-mails and have learned SO much from all of you

guys. I need advice on a couple things and as always, it is usually best

coming fromt hose who have experienced it.

Bretts has a mini joystick for his power chair and we are very unhappy

with it as it has broken a couple times. Does anyone have any other

joystick options for a weak or even a mid type 2? I want to trial

another type. It is not worth it to have this one if it is so dang

sensitive that it is going to break all of the time- Brett is just

heartbroken and is almost scared to get back into his powerchair- no

matter what I say- so this has been a rough week for us.

Also, Brett has a pretty severe " S " curve which they say has progressed

into his neck- has anyone else heard of this happening? Yesterday, Brett

did his final fittings for his new seating system. We were so excited!

His old one just wasn't working out because his left side and shoulder

kept collapsing and it kept leaving marks on him so the company said

they should have realized Brett's complexity in his muscle weakness and

put him in a more supportive seating system. Well, after hours and hours

in several fitting sessions- we were having the same issues- it turns

out that because of the severity of Brett's " S " curve in his back and

progressing to his neck- the weight of his head causes the collapse of

the shoulder and left side. The only way to correct the collapse is to

get a neck/ head rest that forces his neck and head straight- we tested

one- it was almost like half of a cast- he would lose ALL independence

with neck and head movement and it would only slow down his progression

not stop it. I can't do that to him- I just can't do it. So- another

question I have- is when spinal fusion surgery is done- can they correct

a curve up into the neck? Or is that too dangerous? And again I know

nothing about this surgery yet as I have not researched it. This may not

seem like much- but it has been a completely heartbreaking week for me.

Any help on anything would be great.

Kristal

Mom to Brett- SMA II- 4 years old

" Life is 10% what happens to you and 90% how you respond to it. "

~anonymous

Visit Brett's website at: http://www.our-sma-angels.com/brett/index.htm

<http://www.our-sma-angels.com/brett/index.htm>

[Guest guest]

Jay,

Bretts curve is still flexible and he has actually had a TLSO for the last 3-1/2

years. We actually alternate using it and we got into a molded seating system

(SSO)last year- The SSO is actually suppose to be one step better than the TLSO

because it provides more stability. Brett is in both systems 1/2 a day. We

alternate every 3 hours throughout the day in each. As long as he is in either

system, we don't have any issues with his back. Our problems lie in his left

shoulder collapsing and his neck leaning towards the left, head kinda cocks

towards the right- which the TLSO/ SSO cannot correct. If you look at his

website, you may be able to get an idea of what I mean. Thanks for posting! Like

I said- I appreciate any and all input!

Kristal

Mom to Brett- SMA II- 4 years old

" Life is 10% what happens to you and 90% how you respond to it. " ~anonymous

Visit Brett's website at: http://www.our-sma-angels.com/brett/index.htm

Need advice

Hi my name is Kristal and my son Brett has SMA 2 and is almost 5 years

old. I have been on this list for about a year now but don't post very

much. I do read all the e-mails and have learned SO much from all of you

guys. I need advice on a couple things and as always, it is usually best

coming fromt hose who have experienced it.

Bretts has a mini joystick for his power chair and we are very unhappy

with it as it has broken a couple times. Does anyone have any other

joystick options for a weak or even a mid type 2? I want to trial

another type. It is not worth it to have this one if it is so dang

sensitive that it is going to break all of the time- Brett is just

heartbroken and is almost scared to get back into his powerchair- no

matter what I say- so this has been a rough week for us.

Also, Brett has a pretty severe " S " curve which they say has progressed

into his neck- has anyone else heard of this happening? Yesterday, Brett

did his final fittings for his new seating system. We were so excited!

His old one just wasn't working out because his left side and shoulder

kept collapsing and it kept leaving marks on him so the company said

they should have realized Brett's complexity in his muscle weakness and

put him in a more supportive seating system. Well, after hours and hours

in several fitting sessions- we were having the same issues- it turns

out that because of the severity of Brett's " S " curve in his back and

progressing to his neck- the weight of his head causes the collapse of

the shoulder and left side. The only way to correct the collapse is to

get a neck/ head rest that forces his neck and head straight- we tested

one- it was almost like half of a cast- he would lose ALL independence

with neck and head movement and it would only slow down his progression

not stop it. I can't do that to him- I just can't do it. So- another

question I have- is when spinal fusion surgery is done- can they correct

a curve up into the neck? Or is that too dangerous? And again I know

nothing about this surgery yet as I have not researched it. This may not

seem like much- but it has been a completely heartbreaking week for me.

Any help on anything would be great.

Kristal

Mom to Brett- SMA II- 4 years old

" Life is 10% what happens to you and 90% how you respond to it. "

~anonymous

Visit Brett's website at: http://www.our-sma-angels.com/brett/index.htm

<http://www.our-sma-angels.com/brett/index.htm>

[Guest guest]

Oh yes, the joystick problems... People are absolutely fasinated by my joystick,

like they're magneticallly attracted to it! I've had lots of people just reach

out and grab it, just to see what it does. My favorites are the ones who pull it

towards themselves, and then act surprised when they get run over.

~e

[Guest guest]

Joystick story? Oh yeah. Two years ago, I was in Universal Studios

with my parents. I had just had my control box modified to swing

down to make room for my tray. Unfortunately, the person who

modified it do not possess the foresight to install a locking

mechanism in both directions (it would not swing foward freely, but

it would swing backwards).

So, we were waiting in line for the ET ride. All of a sudden, some

lady bursts out of the entrance-only door. I don't know if she was

drunk, high, or perhaps a combination of the two. Regardless, she

stumbles through the crowd, using random people and walls to

maintain her balance, and fails to notice yours truly in her path of

destruction. At the last minute, she dodges me by pushing herself

off of my chair. My unsecured control box gave way under her impact

trapping my arm against the armrest. The joystick became jammed by

my arm all the way forward, and my chair took off at top speed and

ran up the leg of this poor Chinese man waiting in line in front of

us. I was okay, but he was limping pretty bad. The worst part of

all, they didn't even remove her from the park. I mean, what

customers are they really trying to serve?

-

> Brett is not the only one who has problems with people touching

his joystick LOL. He should try turning his chair off if possible

around the other kids (I realize thats not always possible). Grown

ups are just as bad believe me, even healthcare " professionals " .

People don't realize that the joystick is a " live wire " as I refer

to it in those situations. I have been thrown under tables, thrown

this way and that, had my knees slammed into walls. I had one nurse

while giving me an xray place a pillow right on top of it.

Thankfully I had a premonition she was not the brightest bulb and

turned it off in time. Hey, anyone else have a good joystick story

LOL? I understand how his seating problems might limit his

independence too. When I was in my 20's MD tried a rigid seating

system for me too, I couldn't move, shift my weight, eat, comb my

hair, nothing. Needless to say 2days later my friends took

everything off and put my old stuff back on my chair. I hope things

turn out for Brett, he seems like a great kid

> Doug

>

>

[Guest guest]

Hmmmm. That's interesting. I still think I get several other opinions

before I would consider fusing the neck. Jordan is fused all the way to

T1, which is higher than we wanted because that limits his ability to

turn his head enough without fusing the neck.

Question for others already with fused spines: Do you have recurring

back strains since your fusion? Jordan seems to hurt his back regularly

from leaning to far forward, turning the wrong, or from being " folded "

when he's lifted.

Thanks!

Jay

Re: Need advice

Jay,

Bretts curve is still flexible and he has actually had a TLSO for the

last 3-1/2 years. We actually alternate using it and we got into a

molded seating system (SSO)last year- The SSO is actually suppose to be

one step better than the TLSO because it provides more stability. Brett

is in both systems 1/2 a day. We alternate every 3 hours throughout the

day in each. As long as he is in either system, we don't have any issues

with his back. Our problems lie in his left shoulder collapsing and his

neck leaning towards the left, head kinda cocks towards the right- which

the TLSO/ SSO cannot correct. If you look at his website, you may be

able to get an idea of what I mean. Thanks for posting! Like I said- I

appreciate any and all input!

Kristal

Mom to Brett- SMA II- 4 years old

" Life is 10% what happens to you and 90% how you respond to it. "

~anonymous

Visit Brett's website at: http://www.our-sma-angels.com/brett/index.htm

<http://www.our-sma-angels.com/brett/index.htm>

Need advice

Hi my name is Kristal and my son Brett has SMA 2 and is almost 5 years

old. I have been on this list for about a year now but don't post very

much. I do read all the e-mails and have learned SO much from all of

you

guys. I need advice on a couple things and as always, it is usually

best

coming fromt hose who have experienced it.

Bretts has a mini joystick for his power chair and we are very unhappy

with it as it has broken a couple times. Does anyone have any other

joystick options for a weak or even a mid type 2? I want to trial

another type. It is not worth it to have this one if it is so dang

sensitive that it is going to break all of the time- Brett is just

heartbroken and is almost scared to get back into his powerchair- no

matter what I say- so this has been a rough week for us.

Also, Brett has a pretty severe " S " curve which they say has

progressed

into his neck- has anyone else heard of this happening? Yesterday,

Brett

did his final fittings for his new seating system. We were so excited!

His old one just wasn't working out because his left side and shoulder

kept collapsing and it kept leaving marks on him so the company said

they should have realized Brett's complexity in his muscle weakness

and

put him in a more supportive seating system. Well, after hours and

hours

in several fitting sessions- we were having the same issues- it turns

out that because of the severity of Brett's " S " curve in his back and

progressing to his neck- the weight of his head causes the collapse of

the shoulder and left side. The only way to correct the collapse is to

get a neck/ head rest that forces his neck and head straight- we

tested

one- it was almost like half of a cast- he would lose ALL independence

with neck and head movement and it would only slow down his

progression

not stop it. I can't do that to him- I just can't do it. So- another

question I have- is when spinal fusion surgery is done- can they

correct

a curve up into the neck? Or is that too dangerous? And again I know

nothing about this surgery yet as I have not researched it. This may

not

seem like much- but it has been a completely heartbreaking week for

me.

Any help on anything would be great.

Kristal

Mom to Brett- SMA II- 4 years old

" Life is 10% what happens to you and 90% how you respond to it. "

~anonymous

Visit Brett's website at:

http://www.our-sma-angels.com/brett/index.htm

<http://www.our-sma-angels.com/brett/index.htm>

< http://www.our-sma-angels.com/brett/index.htm

<http://www.our-sma-angels.com/brett/index.htm> >

[Guest guest]

I had my surgery done over 18 years ago. At this point it causes no

back strains that I have noticed. In fact, I think it gets strained

less often because it's pretty much fused into position and my muscles

have because accustomed to it. The only thing I notice affecting the

pain levels in my back is underinflaction of my air seat cushion. If it

gets too low, it pinches the nerve running up and down my left leg and

that hurts!

Jenn

jondus@... wrote:

>Hmmmm. That's interesting. I still think I get several other opinions

>before I would consider fusing the neck. Jordan is fused all the way to

>T1, which is higher than we wanted because that limits his ability to

>turn his head enough without fusing the neck.

>

>Question for others already with fused spines: Do you have recurring

>back strains since your fusion? Jordan seems to hurt his back regularly

>from leaning to far forward, turning the wrong, or from being " folded "

>when he's lifted.

>

>Thanks!

>

>Jay

>

[Guest guest]

I had my fusion done almost 30 years ago (Yikes!). They fused my

spine from T10-L4. Several years ago I developed a herniated

cervical disk at the C3/4 level. The spine specialist I was seeing

told me it was caused by added pressure being put on my upper back,

because my fusion was so low. Being large busted also contributed to

the problem, pulling my neck and shoulders forward over the years.

So I definitely get recurring neck strains, no doubt.

I also get lower back strains when I get lifted too often. Most of

the time, I'm able to do my own transfers, but if my husband and I

are away from home, I need his help to transfer to bed and toilets.

We transfer using something of a pivot transfer. He stands in front

of me, gets both hand under my armpits, and pivots me from my chair,

to whatever surface I need to go to. After a few days of this, my

lower back starts to really kill me...and the pain can last a long

time after we finish doing those transfers...like weeks.

--- jondus@... wrote:

>Question for others already with fused spines: Do you have

>recurring back strains since your fusion? Jordan seems to hurt his

>back regularly from leaning to far forward, turning the wrong, or

>from being " folded " when he's lifted.

__________________________________________________

[Guest guest]

I had my fusion done about 20 years ago. It's never given me any problem.

RE: Need advice

I had my fusion done almost 30 years ago (Yikes!). They fused my

spine from T10-L4. Several years ago I developed a herniated

cervical disk at the C3/4 level. The spine specialist I was seeing

told me it was caused by added pressure being put on my upper back,

because my fusion was so low. Being large busted also contributed to

the problem, pulling my neck and shoulders forward over the years.

So I definitely get recurring neck strains, no doubt.

I also get lower back strains when I get lifted too often. Most of

the time, I'm able to do my own transfers, but if my husband and I

are away from home, I need his help to transfer to bed and toilets.

We transfer using something of a pivot transfer. He stands in front

of me, gets both hand under my armpits, and pivots me from my chair,

to whatever surface I need to go to. After a few days of this, my

lower back starts to really kill me...and the pain can last a long

time after we finish doing those transfers...like weeks.

--- jondus@... wrote:

>Question for others already with fused spines: Do you have

>recurring back strains since your fusion? Jordan seems to hurt his

>back regularly from leaning to far forward, turning the wrong, or

>from being " folded " when he's lifted.

__________________________________________________

[Guest guest]

> Hello group, I terribly need an advice. my son has been taking

> steroids for the last year, and cycles were coming closer and

> closer,therfor we decided to stop taking them. The last dose was

> last Thursday. His fever went up again on Saturday and has been

> really sick since. We did not give him the steroid since and really

> don't know what to do now. His temperature is at least 105,has a

> terribly sore throat, has difficulty in walking and is niggled and

> crying all day long. he has hardly eaten a thing in a week.

> There is no sigh for any relief and are tempted to give him a dose

> but really want him of them. we are still searching for the right

> doctor which is not easy,and will see one only next week. our child

> is suffering so much and really needs help now.

> Thank you all for having this supportive group, you all know much

> better about than any one else.

> Avi,the frustrated father of Tomer,3,

> Israel

Hello,

My name is . My son has and he is 15. I have not posted

for awhile but was wondering how gradual he was taken off the steroid?

If one is taken off the steriod too fast our doctor said it will be

very hard on the body. I can only imagine how frustrated you are.

When charlie was sick it was in the early 90's. Before everyone had

the internet. I felt like I was the only person in the world that

had a child with a fever disorder. The doctors were very little help

as they were as puzzled with his fevers as we were. There is light

at the end of the tunnel. Since Charlie hit puberty his fevers

stopped. He started getting them at 5 and stopped at 14. The older

he got the less he got sick. It is such a strange disease and when

you tell people about the sickness they look at you like you are

making it up. Anyway, good luck and I hope that the doctor you see

next week will help. We had Charlie to doctors in 5 states including

the mayo clinic. You will find a doctor it just takes alot of time.

[Guest guest]

> Hello group, I terribly need an advice. my son has been taking

> steroids for the last year, and cycles were coming closer and

> closer,therfor we decided to stop taking them. The last dose was

> last Thursday. His fever went up again on Saturday and has been

> really sick since. We did not give him the steroid since and really

> don't know what to do now. His temperature is at least 105,has a

> terribly sore throat, has difficulty in walking and is niggled and

> crying all day long. he has hardly eaten a thing in a week.

> There is no sigh for any relief and are tempted to give him a dose

> but really want him of them. we are still searching for the right

> doctor which is not easy,and will see one only next week. our child

> is suffering so much and really needs help now.

> Thank you all for having this supportive group, you all know much

> better about than any one else.

> Avi,the frustrated father of Tomer,3,

> Israel

Hello,

My name is . My son has and he is 15. I have not posted

for awhile but was wondering how gradual he was taken off the steroid?

If one is taken off the steriod too fast our doctor said it will be

very hard on the body. I can only imagine how frustrated you are.

When charlie was sick it was in the early 90's. Before everyone had

the internet. I felt like I was the only person in the world that

had a child with a fever disorder. The doctors were very little help

as they were as puzzled with his fevers as we were. There is light

at the end of the tunnel. Since Charlie hit puberty his fevers

stopped. He started getting them at 5 and stopped at 14. The older

he got the less he got sick. It is such a strange disease and when

you tell people about the sickness they look at you like you are

making it up. Anyway, good luck and I hope that the doctor you see

next week will help. We had Charlie to doctors in 5 states including

the mayo clinic. You will find a doctor it just takes alot of time.

[Guest guest]

Dear Avi

I hope Tomer is feeling better.

I have an uncle working at NIH and he called Dr. Kastner a few days ago. I'll

give you the names of the doctors he knows here in Israel they all work at Tel

ha Shomer hospital.

I'll try to call you later.

Ilana - mom to Gal 5

__________________________________________________

[Guest guest]

Dear Avi

I hope Tomer is feeling better.

I have an uncle working at NIH and he called Dr. Kastner a few days ago. I'll

give you the names of the doctors he knows here in Israel they all work at Tel

ha Shomer hospital.

I'll try to call you later.

Ilana - mom to Gal 5

__________________________________________________

[Guest guest]

Anne, sounds great, well written. One thing I didn't see him touch base with is how these children take everything so literally. My son is approaching 13, and you have to be so careful about what you say. Also the self esteem issues are serious. Sorry I didn't get this till now, hope it's not too late!

Need advice

Hopefully someone will get this today. My husband did a research paper on Asperger Syndrome and it's due tonight, but it's not long enough. If anyone gets the chance to read this during the day and make comments about what should be added, please do. I think it's a good paper, but he's really stressing about it.

Anne

[Guest guest]

Hi , and welcome to this Kombucha List!

> .... My first two batches developed the air bubbles on top that

> were connected to a very thin scobys about 5-6 days into the brew. I

> didn't know then to release the bubbles.

There is no problem really! Bubbles are a sign of healthy brewing

activity.

After 5 or 6 days scoby will mostly still be quite thin.

The thickness of a scoby is quite secondary, it's the Kombucha

ferment/liquid that matters, the thing you actually consume.

> Here's my dilemma: The batches are sweeter than I would like them to

> be. I have the batch divided into 16 oz. glass bottles with scrw

> lids. If I set them out on a pantry shelf in the same temps mentioned

> above for a few days, would I get the increased acidity I am looking

> for?

If you bottled your brew too sweet, there is a little fermentation

still happening but relatively slowly ...as your bottles are glass

watch out! They need to be refrigerated quite soon unless the pressure

will burst them.

If the brew is really far too sweet I should put the whole lot back into

a brewing container and leave for another few days. You might not need

a scoby any more as by this time enough acidity will be present in the

brew to ferment on. It will then form another scoby on top, probably

very thin, but it's the Kombucha Tonic you are watching!

> Also, are the warm temperatures responsible for the thinner scobys?

>

> Would adding the shot of sherry, rum, etc. discussed in earlier

> threads solve this problem?

Have a look at this very good trouble shooting site which might give you

the scoby answer you are seeking.

http://w3.trib.com/~kombu/KTBalance.shtml Kombucha Balance

> And one more question I can't seem to find the answer to: Is it okay

> to store scobys swimming in KT in a covered glass bowl in the

> refrigerator?

I never put any scoby in the fridge, because the cold will put it into

hibernation. It will be very difficult to bring it back into any brewing

regime and the cold will upset its balance.

My advice is: leave scoby/s in glass container with plenty of Kombucha

liquid covering it. Put it into your pantry to keep your bottles company..

There is a useful side effect to the Kombucha liquid with your waiting

scobys:

It will get really acidic and make the best starter for any new brew.

> I would be most grateful for any advice you can pass on.

Hope that goes towards answering some of your questions.

Most kombuchaly,

Margret:-)

--

+---------------------------------------------------------------+

Minstrel@...

<)))<>< www.therpc.f9.co.uk <)))<><

+---------------------------------------------------------------+

The greatest male financier in the Bible was Noah:

He was floating his stock while everyone else was in liquidation.

[Guest guest]

Questions from Michele:

> Here's my dilemma: The batches are sweeter than

> I would like them to be. . . If I set them out

> on a pantry shelf in the same temps mentioned

> above for a few days, would I get the increased

> acidity I am looking for?

Not really. Without air for that short a period it will probably still

taste sweet or even sweeter. (a phenomena best left for another post) You

should just ferement longer.

> Also, are the warm temperatures responsible for the thinner scobys?

Not exactly but often they can be related. When the yeast are very active

(due to warm temperatures) often the brew sours faster than the bacteria can

build the cellulose SCOBY. And so we harvest before full growth.

> Would adding the shot of sherry, rum, etc. discussed in earlier threads

solve this problem?

No.

> Is it okay to store scobys swimming in KT in a covered glass bowl in the

refrigerator?

Yes. But if you intend to use them for fermenting, remove them from the

fridge a few days in advance.

- Len

[Guest guest]

Hi Margret,

Thanks so much for all the helpful advice.

The link you suggested is just what I was looking for. (Many thanks,

Len.)

Best wishes from across the pond!

Michele

[Guest guest]

Hi Len,

Thanks for responding to my questions.

Kind regards,

Michele

[Guest guest]

Hi , sorry OCD is worsening! And, personally, I think puberty

can kick it into gear a bit.

What OCD behaviors does she have, rituals, thoughts...besides the BM

thing? Was the latter the same problem as before?

Did CBT help at all, or did she quit after starting medication? CBT

and ERP are the only recommended therapies for OCD. I have seen EMDR

mentioned here before, but can't recall what was said. If you want

to search thru the archives (no telling how far back), you should

find the topic.

Do you think she's jealous of baby (congrats on that!) any? I know

my oldest was jealous of the twins for a while. He'd been looking

forward to them " arriving " and then was a bit attention-grabbing

after they were born.

And then your dd *is* 11 and the " teenage mouth/rebellion " can begin

at any time, doesn't necessarily wait until *13*!!.

I think a good psychiatrist might be able to switch her to a new

medication without having to wean her off the current Luvox first to

switch. Did Prozac have zero effect??

Sorry I'm not more help, but mostly questions!

single mom, 3 sons

, 16, with OCD, dysgraphia and Aspergers

(only tried Celexa, now on no medication and doing pretty well!)

>

>>

> Hi,

>

> My daughter, who is 11 now, was diagnosed w/ OCD last year. We

went to a psycholosgist who did some CBT, and we also took her to

biofeedback at childrens hospital. Everntually, her OCD got so bad

that we decided to put her on medication, and start seeing a

psychatrist. She tried Prozac first, with no help, then she tried

Lovax (her Dad is on this). It worked wonders, but it seems to have

lost it's affect in the last few months (I had a baby 7 monyjs ago)

[Guest guest]

Sacora,

Maybe you could have your doctor contact Dr. Kastner direct.

Hope that helps.

Fran

Fran A Bulone

Mom to ph 6 yrs old

Waxhaw, NC

Owner & Moderator Group

[Guest guest]

HI FRAN-

Well I just called Plass and our appointment is March 29-30 and I will

be seen too. She wanted March 1-2 but that is too soon for me to get some money

to go so I took the 29 and 30 appointment. I am so excited but scarred too. Is

there anything I need to know or do before then? Do you know if they allow a

family member to go with you? Ellyn sent some information on periodic fever

sydromes I was reading up on them and boy HIDS stood out for my son but you

never know it could be something way different.

Thank you Fran

Mom of Nicolas 12

Redmond OR

Fran Bulone <fbulone@...> wrote:

Sacora,

Maybe you could have your doctor contact Dr. Kastner direct.

Hope that helps.

Fran

Fran A Bulone

Mom to ph 6 yrs old

Waxhaw, NC

Owner & Moderator Group

[Guest guest]

Why don¹t you post what you ate for a day or two so people can see it. It

might just be adjusting something here or there to get your ratios right. I

did notice your previous post which indicates things are moving in the right

direction, and you¹re in week 4 or 5 right?

BF % is down from 31.8% to 29.8%

Lost- 3.9 lbs of fat

Gained- 1.9 lbs of muscle

Weight before- 166.7, weight now, 164.7

Lost 1.5 inches off my waist

        1.0 inches off my chest lol

        1.0 inches off my hips

         .5  inches off my thighs (.5 off each leg)

> Hey All

> So I've been pretty bummed with my scale weight loss so far and I thought I

> would just monitor my calories and carb/protien ratio using selfdietclub.com

> (exactly the same as fitday). I noticed after dinner I was at about 50%

> carb, 26% protien, and 24% fat for where my calories were coming from...

> This came as a big shock because I thought I had been doing so well getting

> protien in at every meal. So I came home from work at 930 and had 2 meals

> left. I just had a protien shake, no carbs... Then at 1130 I had another

> shake... My totals for the day are now 42% carb, 35% protien, 23% fat, and

> 1331 calories... That's 141 grams of carbs, 33 grams of fat, and 114 grams

> of protien...

>

> I'm just wondering if any of you would have done something different...

> Should I have drank even ANOTHER shake or had some more cottage cheese or

> something? Should I have gone ahead and had some carbs in my last two meals

> anyway?

>

> Also, I've heard we should be aiming between 20-25 grams of protien per

> meal, and I've also heard we should aim for one gram for every pound of lean

> mass we have... So which is it? I don't wanna wreck my kidneys by eating

> too much but I don't want to lose muscle mass either...

>

> I know, I'm obsessing, but it was just a shock to see that big 50% of the

> pie chart being filled up with carbs...

>

>

>

>

[Guest guest]

Yeah it's moving in the right direction, again I'm just used to losing fat

way faster so I just want to make sure I wasn't eating a massive amt of

calories or anything... heres what I ate yesterday...

Turkey Bacon Melt from EFL

Oatmeal and Egg beaters

String cheese and yogurt

South Beach Diet frozen meal (32 carb, 24 protien)

then the 2 protien shakes

I'll post tonight again with what I ate today

Re: Need Advice

> Why don¹t you post what you ate for a day or two so people can see it. It

> might just be adjusting something here or there to get your ratios right.

> I

> did notice your previous post which indicates things are moving in the

> right

> direction, and you¹re in week 4 or 5 right?

>

> BF % is down from 31.8% to 29.8%

> Lost- 3.9 lbs of fat

> Gained- 1.9 lbs of muscle

> Weight before- 166.7, weight now, 164.7

> Lost 1.5 inches off my waist

> 1.0 inches off my chest lol

> 1.0 inches off my hips

> .5 inches off my thighs (.5 off each leg)

>

>

>

>

>

>> Hey All

>> So I've been pretty bummed with my scale weight loss so far and I thought

>> I

>> would just monitor my calories and carb/protien ratio using

>> selfdietclub.com

>> (exactly the same as fitday). I noticed after dinner I was at about 50%

>> carb, 26% protien, and 24% fat for where my calories were coming from...

>> This came as a big shock because I thought I had been doing so well

>> getting

>> protien in at every meal. So I came home from work at 930 and had 2

>> meals

>> left. I just had a protien shake, no carbs... Then at 1130 I had another

>> shake... My totals for the day are now 42% carb, 35% protien, 23% fat,

>> and

>> 1331 calories... That's 141 grams of carbs, 33 grams of fat, and 114

>> grams

>> of protien...

>>

>> I'm just wondering if any of you would have done something different...

>> Should I have drank even ANOTHER shake or had some more cottage cheese or

>> something? Should I have gone ahead and had some carbs in my last two

>> meals

>> anyway?

>>

>> Also, I've heard we should be aiming between 20-25 grams of protien per

>> meal, and I've also heard we should aim for one gram for every pound of

>> lean

>> mass we have... So which is it? I don't wanna wreck my kidneys by

>> eating

>> too much but I don't want to lose muscle mass either...

>>

>> I know, I'm obsessing, but it was just a shock to see that big 50% of the

>> pie chart being filled up with carbs...

>>

>>

>>

>>

>

>

>

>