Question

[Guest guest]

You could have alcohol as soon as you are off of the pain meds. I

even had some wine through a Zip n squeeze! it was someone's birthday

and I had about 2 ounces of wine with dinnner (it think I pureed

chicken potatoes and gravy)

I wouldn't over do it but you can have a drink or a beer if you can

manage to drink it!

Marsha

>

> how long until u can drink alcohol??? and doesnt orange juice burn

> when ur mouth is cut up?

> thanks

[Guest guest]

grace's daycare provider has mentioned several times

how flexible she is.. i too think she might be in

ballet or gymnastics.. that would be cool... she puts

her foot up by her head and uses her little monkey

toes to pull herself up on the couch.. in her crib she

gets her leg and foot next to her head and tries to

climb out... they are amazed that she can completely

fold herself in half.. what i would give to have that

again.. lol.. she also can put her feet behind her

head and interlock her toes.. ouch..

mommy to Grace 12-03-03 BCF Dobb's Brace 14/7

--- leenernd wrote:

> Hello all-

> My son is now 9 months old-wow does time go by fast.

> I am wondering if

> any parents out there notice that their child is

> extremely flexible-

> especially in the hip area. His PT and OT have even

> mentioned how

> flexible he is-I see a future gymnast. 's

> favorite way to

> transition from the floor to sitting is by going on

> his belly,

> spreading his legs out into the split position, then

> pushing up. To me

> it looks extremely uncomfortable. He isn't crawling

> yet-just rolls

> around and transitions from floor to sitting up and

> back again. I am

> just curious to see especially since I know there

> are a few kids out

> there similar age to .

> Hope you all are having a good summer!

> Kathleen

> mom to BCF 8/28/04, dbb 14/7

>

>

>

>

>

love, lisa

before i made you in the womb, i knew you... love God.

__________________________________

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[Guest guest]

grace's daycare provider has mentioned several times

how flexible she is.. i too think she might be in

ballet or gymnastics.. that would be cool... she puts

her foot up by her head and uses her little monkey

toes to pull herself up on the couch.. in her crib she

gets her leg and foot next to her head and tries to

climb out... they are amazed that she can completely

fold herself in half.. what i would give to have that

again.. lol.. she also can put her feet behind her

head and interlock her toes.. ouch..

mommy to Grace 12-03-03 BCF Dobb's Brace 14/7

--- leenernd wrote:

> Hello all-

> My son is now 9 months old-wow does time go by fast.

> I am wondering if

> any parents out there notice that their child is

> extremely flexible-

> especially in the hip area. His PT and OT have even

> mentioned how

> flexible he is-I see a future gymnast. 's

> favorite way to

> transition from the floor to sitting is by going on

> his belly,

> spreading his legs out into the split position, then

> pushing up. To me

> it looks extremely uncomfortable. He isn't crawling

> yet-just rolls

> around and transitions from floor to sitting up and

> back again. I am

> just curious to see especially since I know there

> are a few kids out

> there similar age to .

> Hope you all are having a good summer!

> Kathleen

> mom to BCF 8/28/04, dbb 14/7

>

>

>

>

>

love, lisa

before i made you in the womb, i knew you... love God.

__________________________________

Discover Yahoo!

Get on-the-go sports scores, stock quotes, news and more. Check it out!

http://discover.yahoo.com/mobile.html

[Guest guest]

Kathleen, does sit in the " W " position at all? At Kolby's 15

month check, his pediatrician commented on how extremely flexible he

was when he was doing his hip motion check. All we could figure out

was that it was from the " W " sitting. That's the way he sat with the

casts and that is the way he has always sat in the brace. He said

that he could not tell that it was causing any problems. He was just

very flexible. I know that the whole " W " sitting thing is not

supposed to be good for them (and looks painful) but that is the only

way he has ever wanted to sit???? What do you do???

mom of Kolby 11/19/03 bcf Dobb's brace 14/7

Brice 6/22/01

Adam 6/7/88

>

>

> > Hello all-

> > My son is now 9 months old-wow does time go by fast.

> > I am wondering if

> > any parents out there notice that their child is

> > extremely flexible-

> > especially in the hip area. His PT and OT have even

> > mentioned how

> > flexible he is-I see a future gymnast. 's

> > favorite way to

> > transition from the floor to sitting is by going on

> > his belly,

> > spreading his legs out into the split position, then

> > pushing up. To me

> > it looks extremely uncomfortable. He isn't crawling

> > yet-just rolls

> > around and transitions from floor to sitting up and

> > back again. I am

> > just curious to see especially since I know there

> > are a few kids out

> > there similar age to .

> > Hope you all are having a good summer!

> > Kathleen

> > mom to BCF 8/28/04, dbb 14/7

> >

> >

> >

> >

> >

>

>

> love, lisa

> before i made you in the womb, i knew you... love God.

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> __________________________________

> Discover Yahoo!

> Get on-the-go sports scores, stock quotes, news and more. Check it

out!

> http://discover.yahoo.com/mobile.html

[Guest guest]

Kathleen, does sit in the " W " position at all? At Kolby's 15

month check, his pediatrician commented on how extremely flexible he

was when he was doing his hip motion check. All we could figure out

was that it was from the " W " sitting. That's the way he sat with the

casts and that is the way he has always sat in the brace. He said

that he could not tell that it was causing any problems. He was just

very flexible. I know that the whole " W " sitting thing is not

supposed to be good for them (and looks painful) but that is the only

way he has ever wanted to sit???? What do you do???

mom of Kolby 11/19/03 bcf Dobb's brace 14/7

Brice 6/22/01

Adam 6/7/88

>

>

> > Hello all-

> > My son is now 9 months old-wow does time go by fast.

> > I am wondering if

> > any parents out there notice that their child is

> > extremely flexible-

> > especially in the hip area. His PT and OT have even

> > mentioned how

> > flexible he is-I see a future gymnast. 's

> > favorite way to

> > transition from the floor to sitting is by going on

> > his belly,

> > spreading his legs out into the split position, then

> > pushing up. To me

> > it looks extremely uncomfortable. He isn't crawling

> > yet-just rolls

> > around and transitions from floor to sitting up and

> > back again. I am

> > just curious to see especially since I know there

> > are a few kids out

> > there similar age to .

> > Hope you all are having a good summer!

> > Kathleen

> > mom to BCF 8/28/04, dbb 14/7

> >

> >

> >

> >

> >

>

>

> love, lisa

> before i made you in the womb, i knew you... love God.

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> __________________________________

> Discover Yahoo!

> Get on-the-go sports scores, stock quotes, news and more. Check it

out!

> http://discover.yahoo.com/mobile.html

[Guest guest]

-

With regards to 's sitting-he usually sits with his feet and

legs in a straight line-after he manages to push himself up from the

split position-his legs then naturally come together-he only goes to

the W position when is reaching for a toy or transitioning to the

ground. HE loves to eat his toes and he can put his feet behind his

head. His PT thinks that he was in the jackknife position in the

womb and that is why he is so flexible in the hips. I remember my

gymnastics days back when I was five and was able to do the things

he does. Since he is my first child, I just wanted to make sure this

was " natural " -I hate second guessing myself!

Thanks,

Kathleen

mom to 8/28/04 bcf dbb 14/7

> >

> > > Hello all-

> > > My son is now 9 months old-wow does time go by fast.

> > > I am wondering if

> > > any parents out there notice that their child is

> > > extremely flexible-

> > > especially in the hip area. His PT and OT have even

> > > mentioned how

> > > flexible he is-I see a future gymnast. 's

> > > favorite way to

> > > transition from the floor to sitting is by going on

> > > his belly,

> > > spreading his legs out into the split position, then

> > > pushing up. To me

> > > it looks extremely uncomfortable. He isn't crawling

> > > yet-just rolls

> > > around and transitions from floor to sitting up and

> > > back again. I am

> > > just curious to see especially since I know there

> > > are a few kids out

> > > there similar age to .

> > > Hope you all are having a good summer!

> > > Kathleen

> > > mom to BCF 8/28/04, dbb 14/7

> > >

> > >

> > >

> > >

> > >

> >

> >

> > love, lisa

> > before i made you in the womb, i knew you... love God.

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> > __________________________________

> > Discover Yahoo!

> > Get on-the-go sports scores, stock quotes, news and more. Check

it

> out!

> > http://discover.yahoo.com/mobile.html

[Guest guest]

-

With regards to 's sitting-he usually sits with his feet and

legs in a straight line-after he manages to push himself up from the

split position-his legs then naturally come together-he only goes to

the W position when is reaching for a toy or transitioning to the

ground. HE loves to eat his toes and he can put his feet behind his

head. His PT thinks that he was in the jackknife position in the

womb and that is why he is so flexible in the hips. I remember my

gymnastics days back when I was five and was able to do the things

he does. Since he is my first child, I just wanted to make sure this

was " natural " -I hate second guessing myself!

Thanks,

Kathleen

mom to 8/28/04 bcf dbb 14/7

> >

> > > Hello all-

> > > My son is now 9 months old-wow does time go by fast.

> > > I am wondering if

> > > any parents out there notice that their child is

> > > extremely flexible-

> > > especially in the hip area. His PT and OT have even

> > > mentioned how

> > > flexible he is-I see a future gymnast. 's

> > > favorite way to

> > > transition from the floor to sitting is by going on

> > > his belly,

> > > spreading his legs out into the split position, then

> > > pushing up. To me

> > > it looks extremely uncomfortable. He isn't crawling

> > > yet-just rolls

> > > around and transitions from floor to sitting up and

> > > back again. I am

> > > just curious to see especially since I know there

> > > are a few kids out

> > > there similar age to .

> > > Hope you all are having a good summer!

> > > Kathleen

> > > mom to BCF 8/28/04, dbb 14/7

> > >

> > >

> > >

> > >

> > >

> >

> >

> > love, lisa

> > before i made you in the womb, i knew you... love God.

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> > __________________________________

> > Discover Yahoo!

> > Get on-the-go sports scores, stock quotes, news and more. Check

it

> out!

> > http://discover.yahoo.com/mobile.html

[Guest guest]

Good days and bad days are typical for most of us. The trouble many of

us have is doing too much on the good days, causing the bad days.

laurie

> I was diagnosed with mito a few months ago. I was wondering if you

> have " good days " and " bad days " . Some days I feel pretty good and other

> days I seem to have more weakness in my arms and legs or with my

> breathing.I have been having increased difficulty climbing steps. I

> have called my neuro about this. I saw my pulmo. md today and my

> breathing has improved which is good news- I guess it should have

> improved with using inhalers and bipap. Thanks for all your help!!

>

>

>

>

>

>

>

> Medical advice, information, opinions, data and statements contained herein

are not necessarily those of the list moderators. The author of this e mail is

entirely responsible for its content. List members are reminded of their

responsibility to evaluate the content of the postings and consult with their

physicians regarding changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends one is

automatically moderated or removed depending on the severity of the attack.

>

>

[Guest guest]

My girls have had them done at Christ Hospital, Children's Hospital of Wisconsin

and The University of Chicago. They are expensive, but our insurance paid.

william hawthorne whhawt@...> wrote: For

those of you who have had a MRS, where was it done and how

expensive? might benefit from having one to see what is going on

with the brain chemistry.

Thanks, Shelby, mother to , age 32, clinical dx of mito

Joanne Kocourek (mom to , lies, and )

visit us at: http://www.caringbridge.org/il/annakris

[Guest guest]

Shelby

I haven't had one, but my sister and her daughter had them at CCF.

laurie

>

>

>

>

>

>

> For those of you who have had a MRS, where was it done and how

> expensive? might benefit from having one to see what is going on

> with the brain chemistry.

>

> Thanks, Shelby, mother to , age 32, clinical dx of mito

>

[Guest guest]

Mine was done at the Medical College of Wi/Froedert Hospital in Milwaukee in

1997. It was expensive also, do not have the papers right now. My military

insurance did pay all but our deductible. We also had a supplement at the time

so paid like $500 out of pocket which was our copay.

One problem we had was that they coded all the paperwork chronic fatique

syndrome so they would at first not pay for anything. It all had to be recoded.

Then the doctor had to write a medical necessity letter explaining the

difference why a MRS was needed rather than a regular more routine and less

expensive MRI.

Janet Sample

Re: question

My girls have had them done at Christ Hospital, Children's Hospital of

Wisconsin and The University of Chicago. They are expensive, but our insurance

paid.

william hawthorne whhawt@...> wrote: For those of you who have had a MRS,

where was it done and how

expensive? might benefit from having one to see what is going on

with the brain chemistry.

Thanks, Shelby, mother to , age 32, clinical dx of mito

Joanne Kocourek (mom to , lies, and )

visit us at: http://www.caringbridge.org/il/annakris

[Guest guest]

Yesterday, I had something strange happen. I noticed my eyes were involuntarily moving (slight) and could not keep them completely focused on the TV. This lasted for about an hour and then was ok. I had my annual eye exam recently and other than dry eyes and superficial inflammation, the eye dr said was ok. I've never had this happen before and was wondering if anyone else had experienced anything like this...Blessings,Becky

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[Guest guest]

Dear Becky, Yes, this happens to me and was one of the reasons the doctors did brain MRI. What you are having is called nystagmus. It is part of the neurosarcoidosis. Mac Tosh wrote: Yesterday, I had something strange happen. I noticed my eyes were involuntarily moving (slight) and could not keep them completely focused on the TV. This lasted for about an hour and then was ok. I had my annual eye exam recently and other than dry

eyes and superficial inflammation, the eye dr said was ok. I've never had this happen before and was wondering if anyone else had experienced anything like this...Blessings,Becky Get the Yahoo! toolbar and be alerted to new email wherever you're surfing.

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[Guest guest]

Becky, did you have any vertigo or other symptoms along with the eye movement? I do experience this (nystagmus), along with vertigo, when I lie flat, look up, or turn my head to the right. I've also had at least one episode without the vertigo. My neurologist started talking to me, then suddenly said, "You're having nystagmus. Did you know that?" Which I didn't. Because it was a new symptom, he ordered an MRI, which of course didn't show anything. After the MRI, he provoked an episode in the office, which also provoked the vertigo. He feels it's BPV--benign positional vertigo, possibly sarc-related, altho many people without sarc have it. No one else has mentioned my eyeballs moving, so as far as I know, it's mostly associated with the positional vertigo. I can't even change a lightbulb in the ceiling, or anything else that requires me to look up.

Anyway, since it's a new symptom for you, tell your neurologist about it. If you don't have an appt soon, call the office & tell the nurse about it. They should get an MRI & possibly an ENT referral. Since I had already seen an ENT several times for the hearing loss & hx of vertigo, we didn't think I needed to go again, but you might need to, especially if you have other symptoms.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: neurosarcoidosis Subject: QuestionDate: Tue, 24 Jul 2007 11:36:32 -0700 (PDT)

Yesterday, I had something strange happen. I noticed my eyes were involuntarily moving (slight) and could not keep them completely focused on the TV. This lasted for about an hour and then was ok. I had my annual eye exam recently and other than dry eyes and superficial inflammation, the eye dr said was ok. I've never had this happen before and was wondering if anyone else had experienced anything like this...Blessings,Becky

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[Guest guest]

Hi Rose,Thanks so much for your quick response. No vertigo. I was sitting/lying on the couch when it happened. My eyes were a little blurry and out of focus. No other symptoms. I can't have an MRI anymore b/c of the AICD. I'll see my doctor next week. If it happens again before then I'll definitely give them a call.Blessings,BeckyRose wrote: Becky, did you have any vertigo or other symptoms along with the eye movement? I do experience this (nystagmus),

along with vertigo, when I lie flat, look up, or turn my head to the right. I've also had at least one episode without the vertigo. My neurologist started talking to me, then suddenly said, "You're having nystagmus. Did you know that?" Which I didn't. Because it was a new symptom, he ordered an MRI, which of course didn't show anything. After the MRI, he provoked an episode in the office, which also provoked the vertigo. He feels it's BPV--benign positional vertigo, possibly sarc-related, altho many people without sarc have it. No one else has mentioned my eyeballs moving, so as far as I know, it's mostly associated with the positional vertigo. I can't even change a lightbulb in the ceiling, or anything else that requires me to look up. Anyway, since it's a new symptom for you, tell your neurologist about it. If you don't have an appt soon, call the office & tell the nurse

about it. They should get an MRI & possibly an ENT referral. Since I had already seen an ENT several times for the hearing loss & hx of vertigo, we didn't think I needed to go again, but you might need to, especially if you have other symptoms. Ramblin' Rose Moderator From: Mac Tosh <macandtosh626 (AT) yahoo (DOT) com>Reply-To: Neurosarcoidosis To:

neurosarcoidosis Subject: QuestionDate: Tue, 24 Jul 2007 11:36:32 -0700 (PDT) Yesterday, I had something strange happen. I noticed my eyes were involuntarily moving (slight) and could not keep them completely focused on the TV. This lasted for about an hour and then was ok. I had my annual eye exam recently and other than dry eyes and superficial inflammation, the eye dr said was ok. I've never had this happen before and was wondering if anyone else had experienced anything like this...Blessings,Becky Get the Yahoo! toolbar and be alerted to

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[Guest guest]

Thanks . I'm not sure what they'll do b/c I can't have an MRI b/c of my AICD.Blessings,Becky Mc-Welsh wrote: Dear Becky, Yes, this happens to me and was one of the reasons the doctors did brain MRI. What you are having is called nystagmus. It is part of the neurosarcoidosis. Mac Tosh <macandtosh626 (AT) yahoo (DOT) com> wrote: Yesterday, I had something strange happen. I noticed my eyes were involuntarily moving (slight) and could not keep them completely focused on the TV. This lasted for about an hour and then was ok. I had my annual eye exam recently and other than dry eyes and superficial inflammation, the eye dr said was ok. I've never had this happen before and was wondering if anyone else had experienced anything like this...Blessings,Becky Get the Yahoo! toolbar and be alerted to new email wherever you're surfing. Fussy? Opinionated? Impossible to please? Perfect. Join

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[Guest guest]

Hi Becky and , I have experienced that too with my eyes not focusing but usually with reading. I have also have had them tested by a opthamologist and he said they were okay. , thanks for the name of the symptoms. DebbieMac Tosh wrote: Thanks . I'm not sure what they'll do b/c I can't have an MRI b/c of my AICD.Blessings,Becky Mc-Welsh wrote: Dear Becky, Yes, this happens to me and was one of the reasons the doctors did brain MRI. What you are having is called nystagmus. It is part of the

neurosarcoidosis. Mac Tosh <macandtosh626 (AT) yahoo (DOT) com> wrote: Yesterday, I had something strange happen. I noticed my eyes were involuntarily moving (slight) and could not keep them completely focused on the TV. This lasted for about an hour and then was ok. I had my annual eye exam recently and other than dry eyes and superficial inflammation, the eye dr said was ok. I've never had this happen before and was wondering if anyone else had experienced anything like this...Blessings,Becky Get the Yahoo! toolbar and be alerted to new email wherever you're surfing. Fussy? Opinionated? Impossible to please? Perfect. Join Yahoo!'s user panel and lay it on us. Sick sense of humor? Visit Yahoo! TV's Comedy with an Edge to see what's on, when.

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[Guest guest]

Hi Terri,

Yup...sounds like your talking about me! I did too much yesterday and the day before and today I have more pain and am exhausted...spending the day riding my recliner instead of going to a fun boutique with my sisters...maybe tomorrow.

in UT

>> > Hey Guys,> > I wanted to know if I am crazy or if this happens to anyone else. If I> don't take time to rest and push myself for a couple of days, I feel> like major crap and have an increase in symptoms. If I rest for a> couple of days the symptoms become minimal and I am back at it in the> vicious circle pushing myself to get things done then back in the same> downward spiral.> > What do you guys think.> > Terri G.>

[Guest guest]

Hi Terri,

Yup...sounds like your talking about me! I did too much yesterday and the day before and today I have more pain and am exhausted...spending the day riding my recliner instead of going to a fun boutique with my sisters...maybe tomorrow.

in UT

>> > Hey Guys,> > I wanted to know if I am crazy or if this happens to anyone else. If I> don't take time to rest and push myself for a couple of days, I feel> like major crap and have an increase in symptoms. If I rest for a> couple of days the symptoms become minimal and I am back at it in the> vicious circle pushing myself to get things done then back in the same> downward spiral.> > What do you guys think.> > Terri G.>