New member Intro

[Guest guest]

Rowan and I had that, he had screaming fits from gas because of all the air he was sucking and an upset tummy from too much foremilk. Have you tried switching sides every three hours? That is, when baby nurses at 9 am offer the right breast, wants to nurse at 10:30 am offer the right, wants to nurse again at 11:45 offer the right, then from noon till 3 pm offer the left and so on? This really helped us and his "over active letdown colic" really settled down. It took less than a week and he was a much happier baby.

Michele, mom of Arran 12-27-93, Keely 12-5-97 & Rowan 3-15-00! ICQ# 13092478Our Family Pages ~ http://www.telusplanet.net/public/jcrocker/index.htmlJoin AllAdvantage.com and get paid to surf the Web! Please use my ID (GJX196) when asked if someone referred you. Thanks! http://www.alladvantage.com/go.asp?refid=GJX196

Do your eyes light up when your child walks into the room? ~ Toni on

Hi All!

My name is and I am a SAHM to 20 month old and 8 week old Mikayla Joy. I nursed for 7 months and felt that it was not long enough. I had a low milk supply and supplemented with a bottle and she ended up refusing to nurse. I do not want to make that mistake again so I am trying to find a support system this time.

I have had trouble nursing Mikayla since she was 2 weeks old and have become quite frustrated. She will suck for a few minutes and then pulls off and cries. I calm her down and she does the same thing over and over. She will suck on her hand so I can tell she is hungry. Even when she does have a good nursing session she will suck, pull off, suck, pull off. It is driving me up the wall and making me sore. I have called LLL and visited my pediatrician and a lactation consultant. I have been told it is an overactive letdown or reflux. My ped gave me Zantac to give her but it seems to make only a little bit of difference. I have tried every trick in the book that the LLL leader told me for overactive letdown (pumping first, trying different positions, etc) She is gaining well so that is not a concern, but when I nurse her it is not the happy experience that I hoped for.

Anyone have any ideas?

Mom to 12/10/98 and Mikayla 6/22/00

[Guest guest]

But then when you do that does the left side get awfully engourged? Or

do you pump on the left to help with the pressure? I would've been

bursing ont he left side I know but wish I'd had that suggestion with

- for months she would gulp the milk because it was coming so

quickly and she would spit up *SO* often - I'm sure that's why. I

would pump before she'd eat to ease the flow but think this every three

hour method would have been much better all around for us! (Though I'm

sure I would have had LOTS of leaking from the side I wasn't using

until my body adjusted).

Oh, how I wish I'd found this list sooner!

--- ~ Michele ~ wrote:

> Rowan and I had that, he had screaming fits from gas because of all

> the air he was sucking and an upset tummy from too much foremilk.

> Have you tried switching sides every three hours? That is, when baby

> nurses at 9 am offer the right breast, wants to nurse at 10:30 am

> offer the right, wants to nurse again at 11:45 offer the right, then

> from noon till 3 pm offer the left and so on? This really helped us

> and his " over active letdown colic " really settled down. It took

> less than a week and he was a much happier baby.

>

> Michele, mom of Arran 12-27-93, Keely 12-5-97 & Rowan 3-15-00! ICQ#

> 13092478

> Our Family Pages ~

> http://www.telusplanet.net/public/jcrocker/index.html

> Join AllAdvantage.com and get paid to surf the Web!

> Please use my ID (GJX196) when asked if someone referred you. Thanks!

>

> http://www.alladvantage.com/go.asp?refid=GJX196

>

> Do your eyes light up when your child walks into the room? ~ Toni

> on

>

>

> Hi All!

>

> My name is and I am a SAHM to 20 month old

> and 8 week old Mikayla Joy. I nursed for 7 months and felt

> that it was not long enough. I had a low milk supply and

> supplemented with a bottle and she ended up refusing to nurse. I do

> not want to make that mistake again so I am trying to find a support

> system this time.

>

> I have had trouble nursing Mikayla since she was 2 weeks old and

> have become quite frustrated. She will suck for a few minutes and

> then pulls off and cries. I calm her down and she does the same

> thing over and over. She will suck on her hand so I can tell she is

> hungry. Even when she does have a good nursing session she will

> suck, pull off, suck, pull off. It is driving me up the wall and

> making me sore. I have called LLL and visited my pediatrician and a

> lactation consultant. I have been told it is an overactive letdown

> or reflux. My ped gave me Zantac to give her but it seems to make

> only a little bit of difference. I have tried every trick in the

> book that the LLL leader told me for overactive letdown (pumping

> first, trying different positions, etc) She is gaining well so that

> is not a concern, but when I nurse her it is not the happy experience

> that I hoped for.

>

> Anyone have any ideas?

>

>

> Mom to 12/10/98 and Mikayla 6/22/00

>

>

=====

Soyster

Owner, Soyster's Baby Boutique

http://babyboutique.safeshopper.com

__________________________________________________

[Guest guest]

But then when you do that does the left side get awfully engourged? Or

do you pump on the left to help with the pressure? I would've been

bursing ont he left side I know but wish I'd had that suggestion with

- for months she would gulp the milk because it was coming so

quickly and she would spit up *SO* often - I'm sure that's why. I

would pump before she'd eat to ease the flow but think this every three

hour method would have been much better all around for us! (Though I'm

sure I would have had LOTS of leaking from the side I wasn't using

until my body adjusted).

Oh, how I wish I'd found this list sooner!

--- ~ Michele ~ wrote:

> Rowan and I had that, he had screaming fits from gas because of all

> the air he was sucking and an upset tummy from too much foremilk.

> Have you tried switching sides every three hours? That is, when baby

> nurses at 9 am offer the right breast, wants to nurse at 10:30 am

> offer the right, wants to nurse again at 11:45 offer the right, then

> from noon till 3 pm offer the left and so on? This really helped us

> and his " over active letdown colic " really settled down. It took

> less than a week and he was a much happier baby.

>

> Michele, mom of Arran 12-27-93, Keely 12-5-97 & Rowan 3-15-00! ICQ#

> 13092478

> Our Family Pages ~

> http://www.telusplanet.net/public/jcrocker/index.html

> Join AllAdvantage.com and get paid to surf the Web!

> Please use my ID (GJX196) when asked if someone referred you. Thanks!

>

> http://www.alladvantage.com/go.asp?refid=GJX196

>

> Do your eyes light up when your child walks into the room? ~ Toni

> on

>

>

> Hi All!

>

> My name is and I am a SAHM to 20 month old

> and 8 week old Mikayla Joy. I nursed for 7 months and felt

> that it was not long enough. I had a low milk supply and

> supplemented with a bottle and she ended up refusing to nurse. I do

> not want to make that mistake again so I am trying to find a support

> system this time.

>

> I have had trouble nursing Mikayla since she was 2 weeks old and

> have become quite frustrated. She will suck for a few minutes and

> then pulls off and cries. I calm her down and she does the same

> thing over and over. She will suck on her hand so I can tell she is

> hungry. Even when she does have a good nursing session she will

> suck, pull off, suck, pull off. It is driving me up the wall and

> making me sore. I have called LLL and visited my pediatrician and a

> lactation consultant. I have been told it is an overactive letdown

> or reflux. My ped gave me Zantac to give her but it seems to make

> only a little bit of difference. I have tried every trick in the

> book that the LLL leader told me for overactive letdown (pumping

> first, trying different positions, etc) She is gaining well so that

> is not a concern, but when I nurse her it is not the happy experience

> that I hoped for.

>

> Anyone have any ideas?

>

>

> Mom to 12/10/98 and Mikayla 6/22/00

>

>

=====

Soyster

Owner, Soyster's Baby Boutique

http://babyboutique.safeshopper.com

__________________________________________________

[Guest guest]

But then when you do that does the left side get awfully engourged? Or

do you pump on the left to help with the pressure? I would've been

bursing ont he left side I know but wish I'd had that suggestion with

- for months she would gulp the milk because it was coming so

quickly and she would spit up *SO* often - I'm sure that's why. I

would pump before she'd eat to ease the flow but think this every three

hour method would have been much better all around for us! (Though I'm

sure I would have had LOTS of leaking from the side I wasn't using

until my body adjusted).

Oh, how I wish I'd found this list sooner!

--- ~ Michele ~ wrote:

> Rowan and I had that, he had screaming fits from gas because of all

> the air he was sucking and an upset tummy from too much foremilk.

> Have you tried switching sides every three hours? That is, when baby

> nurses at 9 am offer the right breast, wants to nurse at 10:30 am

> offer the right, wants to nurse again at 11:45 offer the right, then

> from noon till 3 pm offer the left and so on? This really helped us

> and his " over active letdown colic " really settled down. It took

> less than a week and he was a much happier baby.

>

> Michele, mom of Arran 12-27-93, Keely 12-5-97 & Rowan 3-15-00! ICQ#

> 13092478

> Our Family Pages ~

> http://www.telusplanet.net/public/jcrocker/index.html

> Join AllAdvantage.com and get paid to surf the Web!

> Please use my ID (GJX196) when asked if someone referred you. Thanks!

>

> http://www.alladvantage.com/go.asp?refid=GJX196

>

> Do your eyes light up when your child walks into the room? ~ Toni

> on

>

>

> Hi All!

>

> My name is and I am a SAHM to 20 month old

> and 8 week old Mikayla Joy. I nursed for 7 months and felt

> that it was not long enough. I had a low milk supply and

> supplemented with a bottle and she ended up refusing to nurse. I do

> not want to make that mistake again so I am trying to find a support

> system this time.

>

> I have had trouble nursing Mikayla since she was 2 weeks old and

> have become quite frustrated. She will suck for a few minutes and

> then pulls off and cries. I calm her down and she does the same

> thing over and over. She will suck on her hand so I can tell she is

> hungry. Even when she does have a good nursing session she will

> suck, pull off, suck, pull off. It is driving me up the wall and

> making me sore. I have called LLL and visited my pediatrician and a

> lactation consultant. I have been told it is an overactive letdown

> or reflux. My ped gave me Zantac to give her but it seems to make

> only a little bit of difference. I have tried every trick in the

> book that the LLL leader told me for overactive letdown (pumping

> first, trying different positions, etc) She is gaining well so that

> is not a concern, but when I nurse her it is not the happy experience

> that I hoped for.

>

> Anyone have any ideas?

>

>

> Mom to 12/10/98 and Mikayla 6/22/00

>

>

=====

Soyster

Owner, Soyster's Baby Boutique

http://babyboutique.safeshopper.com

__________________________________________________

[Guest guest]

I did feel awfully full at first, but your body adjusts pretty fast. Plus,

I really only leak on one side--LOL.

Amy Lynn

mother to 1-25-98 and 2-10-00

(Though I'm

> sure I would have had LOTS of leaking from the side I wasn't using

> until my body adjusted).

>

> Oh, how I wish I'd found this list sooner!

>

>

>

[Guest guest]

I did feel awfully full at first, but your body adjusts pretty fast. Plus,

I really only leak on one side--LOL.

Amy Lynn

mother to 1-25-98 and 2-10-00

(Though I'm

> sure I would have had LOTS of leaking from the side I wasn't using

> until my body adjusted).

>

> Oh, how I wish I'd found this list sooner!

>

>

>

[Guest guest]

I did feel awfully full at first, but your body adjusts pretty fast. Plus,

I really only leak on one side--LOL.

Amy Lynn

mother to 1-25-98 and 2-10-00

(Though I'm

> sure I would have had LOTS of leaking from the side I wasn't using

> until my body adjusted).

>

> Oh, how I wish I'd found this list sooner!

>

>

>

[Guest guest]

Not that bad, your body is also adjusting to not producing as much, so you do get a little engorgement BUT I had a nursing toddler to so I would say "Keely want mum mums???" lol

Michele

But then when you do that does the left side get awfully engourged? Ordo you pump on the left to help with the pressure? I would've beenbursing ont he left side I know but wish I'd had that suggestion with - for months she would gulp the milk because it was coming soquickly and she would spit up *SO* often - I'm sure that's why. Iwould pump before she'd eat to ease the flow but think this every threehour method would have been much better all around for us! (Though I'msure I would have had LOTS of leaking from the side I wasn't usinguntil my body adjusted). Oh, how I wish I'd found this list sooner!

[Guest guest]

Not that bad, your body is also adjusting to not producing as much, so you do get a little engorgement BUT I had a nursing toddler to so I would say "Keely want mum mums???" lol

Michele

But then when you do that does the left side get awfully engourged? Ordo you pump on the left to help with the pressure? I would've beenbursing ont he left side I know but wish I'd had that suggestion with - for months she would gulp the milk because it was coming soquickly and she would spit up *SO* often - I'm sure that's why. Iwould pump before she'd eat to ease the flow but think this every threehour method would have been much better all around for us! (Though I'msure I would have had LOTS of leaking from the side I wasn't usinguntil my body adjusted). Oh, how I wish I'd found this list sooner!

[Guest guest]

Not that bad, your body is also adjusting to not producing as much, so you do get a little engorgement BUT I had a nursing toddler to so I would say "Keely want mum mums???" lol

Michele

But then when you do that does the left side get awfully engourged? Ordo you pump on the left to help with the pressure? I would've beenbursing ont he left side I know but wish I'd had that suggestion with - for months she would gulp the milk because it was coming soquickly and she would spit up *SO* often - I'm sure that's why. Iwould pump before she'd eat to ease the flow but think this every threehour method would have been much better all around for us! (Though I'msure I would have had LOTS of leaking from the side I wasn't usinguntil my body adjusted). Oh, how I wish I'd found this list sooner!

[Guest guest]

In a message dated 8/10/00 7:02:21 PM Pacific Daylight Time,

rmmhenne@... writes:

<< I have tried every trick in the book that the LLL leader told me for

overactive letdown (pumping first, trying different positions, etc) She is

gaining well so that is not a concern, but when I nurse her it is not the

happy experience that I hoped for. >>

,

So, you have tried to lay down and nurse her flat on your back? That is what

I have heard can help over active let down. I guess gravity should work with

you if you have this issue. Hmmm...let's see. I sure wish I had some other

ideas. I bet other ladies here will. Once this issue clears up, I bet you

will love nursing her.

- Mama to 3 wonderful boys

[Guest guest]

In a message dated 8/10/00 7:02:21 PM Pacific Daylight Time,

rmmhenne@... writes:

<< I have tried every trick in the book that the LLL leader told me for

overactive letdown (pumping first, trying different positions, etc) She is

gaining well so that is not a concern, but when I nurse her it is not the

happy experience that I hoped for. >>

,

So, you have tried to lay down and nurse her flat on your back? That is what

I have heard can help over active let down. I guess gravity should work with

you if you have this issue. Hmmm...let's see. I sure wish I had some other

ideas. I bet other ladies here will. Once this issue clears up, I bet you

will love nursing her.

- Mama to 3 wonderful boys

[Guest guest]

In a message dated 8/10/00 7:02:21 PM Pacific Daylight Time,

rmmhenne@... writes:

<< I have tried every trick in the book that the LLL leader told me for

overactive letdown (pumping first, trying different positions, etc) She is

gaining well so that is not a concern, but when I nurse her it is not the

happy experience that I hoped for. >>

,

So, you have tried to lay down and nurse her flat on your back? That is what

I have heard can help over active let down. I guess gravity should work with

you if you have this issue. Hmmm...let's see. I sure wish I had some other

ideas. I bet other ladies here will. Once this issue clears up, I bet you

will love nursing her.

- Mama to 3 wonderful boys

[Guest guest]

I still have over active letdown. The best thing to do is nurse that side for start with 2 hours. regardless if she eats 4 times in that time. Do not offer the other breast. If that doesn't give you comfort and make it easier for her increase it. I had to go every 4-5 hours early on up to about 5 months. Now he is 8 months and every 2 hours is fine. Your body will adjust to this. Also, always have 2 bottles handy. When you have the let down, pull babe off and put bottles under. This will catch the spray and save it not waste it into a cloth. I was doing this and catching sometimes up to 10 oz a day! I did this until Ds was 6 months old. I no longer do it. I still do spray though but it is more controlled. Good luck.

Laurie

Re: New member intro

<< I have tried every trick in the book that the LLL leader told me for overactive letdown (pumping first, trying different positions, etc) She is gaining well so that is not a concern, but when I nurse her it is not the happy experience that I hoped for. >>,So, you have tried to lay down and nurse her flat on your back? That is what I have heard can help over active let down. I guess gravity should work with you if you have this issue. Hmmm...let's see. I sure wish I had some other ideas. I bet other ladies here will. Once this issue clears up, I bet you will love nursing her. - Mama to 3 wonderful boysGive the Gift of Life Breastfeed!http://www.lactivist.com

[Guest guest]

I still have over active letdown. The best thing to do is nurse that side for start with 2 hours. regardless if she eats 4 times in that time. Do not offer the other breast. If that doesn't give you comfort and make it easier for her increase it. I had to go every 4-5 hours early on up to about 5 months. Now he is 8 months and every 2 hours is fine. Your body will adjust to this. Also, always have 2 bottles handy. When you have the let down, pull babe off and put bottles under. This will catch the spray and save it not waste it into a cloth. I was doing this and catching sometimes up to 10 oz a day! I did this until Ds was 6 months old. I no longer do it. I still do spray though but it is more controlled. Good luck.

Laurie

Re: New member intro

<< I have tried every trick in the book that the LLL leader told me for overactive letdown (pumping first, trying different positions, etc) She is gaining well so that is not a concern, but when I nurse her it is not the happy experience that I hoped for. >>,So, you have tried to lay down and nurse her flat on your back? That is what I have heard can help over active let down. I guess gravity should work with you if you have this issue. Hmmm...let's see. I sure wish I had some other ideas. I bet other ladies here will. Once this issue clears up, I bet you will love nursing her. - Mama to 3 wonderful boysGive the Gift of Life Breastfeed!http://www.lactivist.com

[Guest guest]

I still have over active letdown. The best thing to do is nurse that side for start with 2 hours. regardless if she eats 4 times in that time. Do not offer the other breast. If that doesn't give you comfort and make it easier for her increase it. I had to go every 4-5 hours early on up to about 5 months. Now he is 8 months and every 2 hours is fine. Your body will adjust to this. Also, always have 2 bottles handy. When you have the let down, pull babe off and put bottles under. This will catch the spray and save it not waste it into a cloth. I was doing this and catching sometimes up to 10 oz a day! I did this until Ds was 6 months old. I no longer do it. I still do spray though but it is more controlled. Good luck.

Laurie

Re: New member intro

<< I have tried every trick in the book that the LLL leader told me for overactive letdown (pumping first, trying different positions, etc) She is gaining well so that is not a concern, but when I nurse her it is not the happy experience that I hoped for. >>,So, you have tried to lay down and nurse her flat on your back? That is what I have heard can help over active let down. I guess gravity should work with you if you have this issue. Hmmm...let's see. I sure wish I had some other ideas. I bet other ladies here will. Once this issue clears up, I bet you will love nursing her. - Mama to 3 wonderful boysGive the Gift of Life Breastfeed!http://www.lactivist.com

[Guest guest]

WELCOME FRIEND!!!!

Glad to see we (finally) got you over here and know you'll learn a ton

while here. These are without question the most informed parents

I know!!

BIG hugs,

Kass, proud mom to Chance(9), Madison(6), and Abby(almost 5)

Beth wrote:

Hello-

I'm new to this group and wanted to introduce myself. My family

has been on

quite a journey for several years and we still have little in the

way of

real answers or concrete dx. This past year (2002) brought some

unexpected

twists and resulted in a new direction for our dx search. My husband

and

five children (ages 10, 8, 6, 2.5-yr-old twins) are affected with

"it",

whatever the "it" is. Within the past few months, we have learned

that we

have a non-specific myopathy, but also have some indicators of

central

nervous system involvement. At a recent drs appt, the ped neuro

told us that

he considers us to have some sort of "energy crisis" going on,

but no one

has been able to figure out what kind.

Our oldest child (10 yrs) had a muscle biopsy done in the fall,

and we are

currently waiting on Dr Shoffner's final report. We have summary

reports

with the histology and oxphos results, and also several other things

that

were checked and came back negative. The histology results showed

a

non-specific myopathy, with significant fiber size variation (greater

in the

type 1/osphos dependent fibers). I had expected black and white

oxphos

results, but instead got "funky numbers" (the words of our neuromuscular

specialist). We are anxiously awaiting Dr Shoffner's final thoughts

on the

matter.

Our family first heard of mito in 1995, when my husband's nephew

(17 mos at

the time) had a stroke. The reason for his stroke was never determined,

but

MELAS was a leading possible dx. At that time, we had two children

with

strange, unexplained neuro stuff going on and I pushed for a "real"

dx and

reason for our kids' hypotonia, delayed development, and other

issues. We

were told repeatedly (a pattern that still repeats itself, as recently

as a

new pat appt with an internist on Dec 26, 2002) that mito could

not be a

possibility because "mito disorders are maternally inherited."

We argued

then, citing an internet article (that we found after our nephew's

stroke)

that described a case that was paternally inherited, but the argument

fell

on deaf dr ears.

I have many, many questions and hope to learn a lot from you all.

Our ped

neuromuscular specialist did think that beginning supplements (carnitor

and

CoQ10) is reasonable, and I'm currently looking for any and all

advice on

that matter. He gave us scripts for carnitor and the dosage range

for CoQ10.

One question I have re: the CoQ10 is does anyone know if it's advisable

to

"cut down" the dose if you're using the Q-gel (hydrosoluble) form...

I keep

getting told by the folks at the various vitamin companies that

a lower dose

of Q-gel is just as effective as a higher dose of "regular" CoQ10...

and I'm

getting very, very confused. The cost of starting the family on

it is

staggering to begin with, but if/when we do it, we sure want to

be doing it

in the most useful, cost-effective way. So far, only my husband

has started

the carnitor.... thought being that he could better recognize adverse

effects of it, as the dr was very concerned about side effects.

We went

ahead and started the carnitor because it was "on hand" while we

try to

figure out how/where best to get CoQ10.

I'm also interested in hearing other people's experiences with biopsy

reports from Dr Shoffner. I'm wondering just how "funky" my daughter's

oxphos numbers are. And I'm also curious about what to expect in

the way of

a final report from Dr Shoffner. Also, has anyone seen Dr Shoffner's

associate, Dr Dougherty (she's the director of "metabolic" part

of the lab,

wiht him doing the "molecular" part)?

Thanks-

-- Beth

Please contact mito-owner with any problems or questions.

[Guest guest]

WELCOME FRIEND!!!!

Glad to see we (finally) got you over here and know you'll learn a ton

while here. These are without question the most informed parents

I know!!

BIG hugs,

Kass, proud mom to Chance(9), Madison(6), and Abby(almost 5)

Beth wrote:

Hello-

I'm new to this group and wanted to introduce myself. My family

has been on

quite a journey for several years and we still have little in the

way of

real answers or concrete dx. This past year (2002) brought some

unexpected

twists and resulted in a new direction for our dx search. My husband

and

five children (ages 10, 8, 6, 2.5-yr-old twins) are affected with

"it",

whatever the "it" is. Within the past few months, we have learned

that we

have a non-specific myopathy, but also have some indicators of

central

nervous system involvement. At a recent drs appt, the ped neuro

told us that

he considers us to have some sort of "energy crisis" going on,

but no one

has been able to figure out what kind.

Our oldest child (10 yrs) had a muscle biopsy done in the fall,

and we are

currently waiting on Dr Shoffner's final report. We have summary

reports

with the histology and oxphos results, and also several other things

that

were checked and came back negative. The histology results showed

a

non-specific myopathy, with significant fiber size variation (greater

in the

type 1/osphos dependent fibers). I had expected black and white

oxphos

results, but instead got "funky numbers" (the words of our neuromuscular

specialist). We are anxiously awaiting Dr Shoffner's final thoughts

on the

matter.

Our family first heard of mito in 1995, when my husband's nephew

(17 mos at

the time) had a stroke. The reason for his stroke was never determined,

but

MELAS was a leading possible dx. At that time, we had two children

with

strange, unexplained neuro stuff going on and I pushed for a "real"

dx and

reason for our kids' hypotonia, delayed development, and other

issues. We

were told repeatedly (a pattern that still repeats itself, as recently

as a

new pat appt with an internist on Dec 26, 2002) that mito could

not be a

possibility because "mito disorders are maternally inherited."

We argued

then, citing an internet article (that we found after our nephew's

stroke)

that described a case that was paternally inherited, but the argument

fell

on deaf dr ears.

I have many, many questions and hope to learn a lot from you all.

Our ped

neuromuscular specialist did think that beginning supplements (carnitor

and

CoQ10) is reasonable, and I'm currently looking for any and all

advice on

that matter. He gave us scripts for carnitor and the dosage range

for CoQ10.

One question I have re: the CoQ10 is does anyone know if it's advisable

to

"cut down" the dose if you're using the Q-gel (hydrosoluble) form...

I keep

getting told by the folks at the various vitamin companies that

a lower dose

of Q-gel is just as effective as a higher dose of "regular" CoQ10...

and I'm

getting very, very confused. The cost of starting the family on

it is

staggering to begin with, but if/when we do it, we sure want to

be doing it

in the most useful, cost-effective way. So far, only my husband

has started

the carnitor.... thought being that he could better recognize adverse

effects of it, as the dr was very concerned about side effects.

We went

ahead and started the carnitor because it was "on hand" while we

try to

figure out how/where best to get CoQ10.

I'm also interested in hearing other people's experiences with biopsy

reports from Dr Shoffner. I'm wondering just how "funky" my daughter's

oxphos numbers are. And I'm also curious about what to expect in

the way of

a final report from Dr Shoffner. Also, has anyone seen Dr Shoffner's

associate, Dr Dougherty (she's the director of "metabolic" part

of the lab,

wiht him doing the "molecular" part)?

Thanks-

-- Beth

Please contact mito-owner with any problems or questions.

[Guest guest]

First, I want to say , this must be tough, especially having no answers. Hopefully, you enjoy every moment you can, there are many good ones. YES, I have seen Dr. Dougherty (Fran, right?) when she was in Boston. I loved her. I didn't realize she was on the patient care end. You are so lucky. Tell her that Josh Lloyd's mom said hi!

Anyway, my husband always had mental problems, blood pressure probs., muscle weakness etc… All diagnosed at different times by different docs. We had two boys. The first has a learning disability, and coordination probs. The second had Leigh's, Dx @ 2.5 years, died @ 6 YO. His muscle biopsy was unspecific: showed a slight variation in size of the mitochondria and increased number. One year after our son died, my husband was becoming progressively weaker, cannot work anymore, went into three days of status epilepticus from anesthesia (and another 2 days to be conscious, and is still getting worse mentally (spent a week in a high security mental ward) and physically a year and 1/2 later. I had to take our other son and leave, due to the mental abuse (VERY EXTREME!!) His muscle biopsy showed ragged red fibers. His mother talked him out of seeing the MDA doc, so he has no answers, treatment, prognosis etc… The neuro we did see in Boston was VERY interested though, wanted to send the info to a researcher in NYC, thinking it may be a dominant paternal gene.

Take care, good luck getting answers

Subject: New Member IntroHello-I'm new to this group and wanted to introduce myself. My family has been onquite a journey for several years and we still have little in the way ofreal answers or concrete dx. This past year (2002) brought some unexpectedtwists and resulted in a new direction for our dx search. My husband andfive children (ages 10, 8, 6, 2.5-yr-old twins) are affected with "it",whatever the "it" is. Within the past few months, we have learned that wehave a non-specific myopathy, but also have some indicators of centralnervous system involvement. At a recent drs appt, the ped neuro told us thathe considers us to have some sort of "energy crisis" going on, but no onehas been able to figure out what kind.Our oldest child (10 yrs) had a muscle biopsy done in the fall, and we arecurrently waiting on Dr Shoffner's final report. We have summary reportswith the histology and oxphos results, and also several other things thatwere checked and came back negative. The histology results showed anon-specific myopathy, with significant fiber size variation (greater in thetype 1/osphos dependent fibers). I had expected black and white oxphosresults, but instead got "funky numbers" (the words of our neuromuscularspecialist). We are anxiously awaiting Dr Shoffner's final thoughts on thematter.Our family first heard of mito in 1995, when my husband's nephew (17 mos atthe time) had a stroke. The reason for his stroke was never determined, butMELAS was a leading possible dx. At that time, we had two children withstrange, unexplained neuro stuff going on and I pushed for a "real" dx andreason for our kids' hypotonia, delayed development, and other issues. Wewere told repeatedly (a pattern that still repeats itself, as recently as anew pat appt with an internist on Dec 26, 2002) that mito could not be apossibility because "mito disorders are maternally inherited." We arguedthen, citing an internet article (that we found after our nephew's stroke)that described a case that was paternally inherited, but the argument fellon deaf dr ears.I have many, many questions and hope to learn a lot from you all. Our pedneuromuscular specialist did think that beginning supplements (carnitor andCoQ10) is reasonable, and I'm currently looking for any and all advice onthat matter. He gave us scripts for carnitor and the dosage range for CoQ10.One question I have re: the CoQ10 is does anyone know if it's advisable to"cut down" the dose if you're using the Q-gel (hydrosoluble) form... I keepgetting told by the folks at the various vitamin companies that a lower doseof Q-gel is just as effective as a higher dose of "regular" CoQ10... and I'mgetting very, very confused. The cost of starting the family on it isstaggering to begin with, but if/when we do it, we sure want to be doing itin the most useful, cost-effective way. So far, only my husband has startedthe carnitor.... thought being that he could better recognize adverseeffects of it, as the dr was very concerned about side effects. We wentahead and started the carnitor because it was "on hand" while we try tofigure out how/where best to get CoQ10.I'm also interested in hearing other people's experiences with biopsyreports from Dr Shoffner. I'm wondering just how "funky" my daughter'soxphos numbers are. And I'm also curious about what to expect in the way ofa final report from Dr Shoffner. Also, has anyone seen Dr Shoffner'sassociate, Dr Dougherty (she's the director of "metabolic" part of the lab,wiht him doing the "molecular" part)?Thanks--- Beth

[Guest guest]

Hi Debra-

Thank you for your response. It is heartbreaking to hear the many ways that mito can affect families. I am very sorry all that you have been through, but do appreciate your sharing some of your story.

Not having answers IS tough, and after pushing for them for many years, our family (well, me mostly since I'm the "pushy" one ) just sort of went into "management mode" and did what we knew to do (therapies, etc). Then, last spring, we were unexpectedly yanked from that comfort zone and are now back in full swing looking and asking. Our main goal is to know that we're doing all we can do. And that is sort of where Dr Dougherty comes in... we saw Dr Shoffner for our "one-time consult" the day before my daughter's biopsy. Now, with some of the results in hand, we've got more questions than we had before the testing... so a consult with Dr Dougherty has been suggested.

We have not scheduled the appt, as our neuromuscular dr thought we should wait for the fatty acid oxidation studies to come back (we found out last week that they're back). Our hope is that Dr Dougherty would be able to look at the whole family and maybe have some ideas for how to tie it all together. I don't know if she actually "follows" patients, or if it will be another one-time-type consult.

We are at a loss trying to figure out who should be following the kids, not to mention the difficulty we're having trying to find a "lead" dr for my husband. He had his first MDA appt the day before we met with Dr Shoffner, and the resident then the attending dr both told us that our family could not have a mito problem... because he's the dad... we let it pass with the resident, but took it up with the attending, gently reminding him about nDNA... he then told us that "those cases are exceedingly rare".... The very next day, Dr Shoffner told us that 70-80% of the mito cases are believed to be at least in part due to nDNA defects (and I asked him for a signed note that we could share to educate our other drs!). We are not sure what we are going to do to find a dr for my husband.... thankfully, he's been generally healthy... his myopathy was dx'd in the fall by the ped neuro at an initial appt for two of our children. The adult MDA clinic did refer him to PT, OT, and speech. My husband and I are both pretty concerned about some not-so-good changes that we've seen with him in the past couple of years... but most of the issues would likely be written off as "stress". We discussed having my husband do the biopsy rather than our daughter, but without a dr for him, it would have been very hard to arrange... and also his medical history is not nearly as extensive (read: more justification for insurance with daughter )

Anyway, thank you very much for you post. I'll be sure and let you know if we schedule an appt with Dr Dougherty.

-- Beth

New Member IntroHello-I'm new to this group and wanted to introduce myself. My family has been onquite a journey for several years and we still have little in the way ofreal answers or concrete dx. This past year (2002) brought some unexpectedtwists and resulted in a new direction for our dx search. My husband andfive children (ages 10, 8, 6, 2.5-yr-old twins) are affected with "it",whatever the "it" is. Within the past few months, we have learned that wehave a non-specific myopathy, but also have some indicators of centralnervous system involvement. At a recent drs appt, the ped neuro told us thathe considers us to have some sort of "energy crisis" going on, but no onehas been able to figure out what kind.Our oldest child (10 yrs) had a muscle biopsy done in the fall, and we arecurrently waiting on Dr Shoffner's final report. We have summary reportswith the histology and oxphos results, and also several other things thatwere checked and came back negative. The histology results showed anon-specific myopathy, with significant fiber size variation (greater in thetype 1/osphos dependent fibers). I had expected black and white oxphosresults, but instead got "funky numbers" (the words of our neuromuscularspecialist). We are anxiously awaiting Dr Shoffner's final thoughts on thematter.Our family first heard of mito in 1995, when my husband's nephew (17 mos atthe time) had a stroke. The reason for his stroke was never determined, butMELAS was a leading possible dx. At that time, we had two children withstrange, unexplained neuro stuff going on and I pushed for a "real" dx andreason for our kids' hypotonia, delayed development, and other issues. Wewere told repeatedly (a pattern that still repeats itself, as recently as anew pat appt with an internist on Dec 26, 2002) that mito could not be apossibility because "mito disorders are maternally inherited." We arguedthen, citing an internet article (that we found after our nephew's stroke)that described a case that was paternally inherited, but the argument fellon deaf dr ears.I have many, many questions and hope to learn a lot from you all. Our pedneuromuscular specialist did think that beginning supplements (carnitor andCoQ10) is reasonable, and I'm currently looking for any and all advice onthat matter. He gave us scripts for carnitor and the dosage range for CoQ10.One question I have re: the CoQ10 is does anyone know if it's advisable to"cut down" the dose if you're using the Q-gel (hydrosoluble) form... I keepgetting told by the folks at the various vitamin companies that a lower doseof Q-gel is just as effective as a higher dose of "regular" CoQ10... and I'mgetting very, very confused. The cost of starting the family on it isstaggering to begin with, but if/when we do it, we sure want to be doing itin the most useful, cost-effective way. So far, only my husband has startedthe carnitor.... thought being that he could better recognize adverseeffects of it, as the dr was very concerned about side effects. We wentahead and started the carnitor because it was "on hand" while we try tofigure out how/where best to get CoQ10.I'm also interested in hearing other people's experiences with biopsyreports from Dr Shoffner. I'm wondering just how "funky" my daughter'soxphos numbers are. And I'm also curious about what to expect in the way ofa final report from Dr Shoffner. Also, has anyone seen Dr Shoffner'sassociate, Dr Dougherty (she's the director of "metabolic" part of the lab,wiht him doing the "molecular" part)?Thanks--- BethPlease contact mito-owner with any problems or questions.

[Guest guest]

Hi Debra-

Thank you for your response. It is heartbreaking to hear the many ways that mito can affect families. I am very sorry all that you have been through, but do appreciate your sharing some of your story.

Not having answers IS tough, and after pushing for them for many years, our family (well, me mostly since I'm the "pushy" one ) just sort of went into "management mode" and did what we knew to do (therapies, etc). Then, last spring, we were unexpectedly yanked from that comfort zone and are now back in full swing looking and asking. Our main goal is to know that we're doing all we can do. And that is sort of where Dr Dougherty comes in... we saw Dr Shoffner for our "one-time consult" the day before my daughter's biopsy. Now, with some of the results in hand, we've got more questions than we had before the testing... so a consult with Dr Dougherty has been suggested.

We have not scheduled the appt, as our neuromuscular dr thought we should wait for the fatty acid oxidation studies to come back (we found out last week that they're back). Our hope is that Dr Dougherty would be able to look at the whole family and maybe have some ideas for how to tie it all together. I don't know if she actually "follows" patients, or if it will be another one-time-type consult.

We are at a loss trying to figure out who should be following the kids, not to mention the difficulty we're having trying to find a "lead" dr for my husband. He had his first MDA appt the day before we met with Dr Shoffner, and the resident then the attending dr both told us that our family could not have a mito problem... because he's the dad... we let it pass with the resident, but took it up with the attending, gently reminding him about nDNA... he then told us that "those cases are exceedingly rare".... The very next day, Dr Shoffner told us that 70-80% of the mito cases are believed to be at least in part due to nDNA defects (and I asked him for a signed note that we could share to educate our other drs!). We are not sure what we are going to do to find a dr for my husband.... thankfully, he's been generally healthy... his myopathy was dx'd in the fall by the ped neuro at an initial appt for two of our children. The adult MDA clinic did refer him to PT, OT, and speech. My husband and I are both pretty concerned about some not-so-good changes that we've seen with him in the past couple of years... but most of the issues would likely be written off as "stress". We discussed having my husband do the biopsy rather than our daughter, but without a dr for him, it would have been very hard to arrange... and also his medical history is not nearly as extensive (read: more justification for insurance with daughter )

Anyway, thank you very much for you post. I'll be sure and let you know if we schedule an appt with Dr Dougherty.

-- Beth

New Member IntroHello-I'm new to this group and wanted to introduce myself. My family has been onquite a journey for several years and we still have little in the way ofreal answers or concrete dx. This past year (2002) brought some unexpectedtwists and resulted in a new direction for our dx search. My husband andfive children (ages 10, 8, 6, 2.5-yr-old twins) are affected with "it",whatever the "it" is. Within the past few months, we have learned that wehave a non-specific myopathy, but also have some indicators of centralnervous system involvement. At a recent drs appt, the ped neuro told us thathe considers us to have some sort of "energy crisis" going on, but no onehas been able to figure out what kind.Our oldest child (10 yrs) had a muscle biopsy done in the fall, and we arecurrently waiting on Dr Shoffner's final report. We have summary reportswith the histology and oxphos results, and also several other things thatwere checked and came back negative. The histology results showed anon-specific myopathy, with significant fiber size variation (greater in thetype 1/osphos dependent fibers). I had expected black and white oxphosresults, but instead got "funky numbers" (the words of our neuromuscularspecialist). We are anxiously awaiting Dr Shoffner's final thoughts on thematter.Our family first heard of mito in 1995, when my husband's nephew (17 mos atthe time) had a stroke. The reason for his stroke was never determined, butMELAS was a leading possible dx. At that time, we had two children withstrange, unexplained neuro stuff going on and I pushed for a "real" dx andreason for our kids' hypotonia, delayed development, and other issues. Wewere told repeatedly (a pattern that still repeats itself, as recently as anew pat appt with an internist on Dec 26, 2002) that mito could not be apossibility because "mito disorders are maternally inherited." We arguedthen, citing an internet article (that we found after our nephew's stroke)that described a case that was paternally inherited, but the argument fellon deaf dr ears.I have many, many questions and hope to learn a lot from you all. Our pedneuromuscular specialist did think that beginning supplements (carnitor andCoQ10) is reasonable, and I'm currently looking for any and all advice onthat matter. He gave us scripts for carnitor and the dosage range for CoQ10.One question I have re: the CoQ10 is does anyone know if it's advisable to"cut down" the dose if you're using the Q-gel (hydrosoluble) form... I keepgetting told by the folks at the various vitamin companies that a lower doseof Q-gel is just as effective as a higher dose of "regular" CoQ10... and I'mgetting very, very confused. The cost of starting the family on it isstaggering to begin with, but if/when we do it, we sure want to be doing itin the most useful, cost-effective way. So far, only my husband has startedthe carnitor.... thought being that he could better recognize adverseeffects of it, as the dr was very concerned about side effects. We wentahead and started the carnitor because it was "on hand" while we try tofigure out how/where best to get CoQ10.I'm also interested in hearing other people's experiences with biopsyreports from Dr Shoffner. I'm wondering just how "funky" my daughter'soxphos numbers are. And I'm also curious about what to expect in the way ofa final report from Dr Shoffner. Also, has anyone seen Dr Shoffner'sassociate, Dr Dougherty (she's the director of "metabolic" part of the lab,wiht him doing the "molecular" part)?Thanks--- BethPlease contact mito-owner with any problems or questions.

[Guest guest]

Hi Debra-

Thank you for your response. It is heartbreaking to hear the many ways that mito can affect families. I am very sorry all that you have been through, but do appreciate your sharing some of your story.

Not having answers IS tough, and after pushing for them for many years, our family (well, me mostly since I'm the "pushy" one ) just sort of went into "management mode" and did what we knew to do (therapies, etc). Then, last spring, we were unexpectedly yanked from that comfort zone and are now back in full swing looking and asking. Our main goal is to know that we're doing all we can do. And that is sort of where Dr Dougherty comes in... we saw Dr Shoffner for our "one-time consult" the day before my daughter's biopsy. Now, with some of the results in hand, we've got more questions than we had before the testing... so a consult with Dr Dougherty has been suggested.

We have not scheduled the appt, as our neuromuscular dr thought we should wait for the fatty acid oxidation studies to come back (we found out last week that they're back). Our hope is that Dr Dougherty would be able to look at the whole family and maybe have some ideas for how to tie it all together. I don't know if she actually "follows" patients, or if it will be another one-time-type consult.

We are at a loss trying to figure out who should be following the kids, not to mention the difficulty we're having trying to find a "lead" dr for my husband. He had his first MDA appt the day before we met with Dr Shoffner, and the resident then the attending dr both told us that our family could not have a mito problem... because he's the dad... we let it pass with the resident, but took it up with the attending, gently reminding him about nDNA... he then told us that "those cases are exceedingly rare".... The very next day, Dr Shoffner told us that 70-80% of the mito cases are believed to be at least in part due to nDNA defects (and I asked him for a signed note that we could share to educate our other drs!). We are not sure what we are going to do to find a dr for my husband.... thankfully, he's been generally healthy... his myopathy was dx'd in the fall by the ped neuro at an initial appt for two of our children. The adult MDA clinic did refer him to PT, OT, and speech. My husband and I are both pretty concerned about some not-so-good changes that we've seen with him in the past couple of years... but most of the issues would likely be written off as "stress". We discussed having my husband do the biopsy rather than our daughter, but without a dr for him, it would have been very hard to arrange... and also his medical history is not nearly as extensive (read: more justification for insurance with daughter )

Anyway, thank you very much for you post. I'll be sure and let you know if we schedule an appt with Dr Dougherty.

-- Beth

New Member IntroHello-I'm new to this group and wanted to introduce myself. My family has been onquite a journey for several years and we still have little in the way ofreal answers or concrete dx. This past year (2002) brought some unexpectedtwists and resulted in a new direction for our dx search. My husband andfive children (ages 10, 8, 6, 2.5-yr-old twins) are affected with "it",whatever the "it" is. Within the past few months, we have learned that wehave a non-specific myopathy, but also have some indicators of centralnervous system involvement. At a recent drs appt, the ped neuro told us thathe considers us to have some sort of "energy crisis" going on, but no onehas been able to figure out what kind.Our oldest child (10 yrs) had a muscle biopsy done in the fall, and we arecurrently waiting on Dr Shoffner's final report. We have summary reportswith the histology and oxphos results, and also several other things thatwere checked and came back negative. The histology results showed anon-specific myopathy, with significant fiber size variation (greater in thetype 1/osphos dependent fibers). I had expected black and white oxphosresults, but instead got "funky numbers" (the words of our neuromuscularspecialist). We are anxiously awaiting Dr Shoffner's final thoughts on thematter.Our family first heard of mito in 1995, when my husband's nephew (17 mos atthe time) had a stroke. The reason for his stroke was never determined, butMELAS was a leading possible dx. At that time, we had two children withstrange, unexplained neuro stuff going on and I pushed for a "real" dx andreason for our kids' hypotonia, delayed development, and other issues. Wewere told repeatedly (a pattern that still repeats itself, as recently as anew pat appt with an internist on Dec 26, 2002) that mito could not be apossibility because "mito disorders are maternally inherited." We arguedthen, citing an internet article (that we found after our nephew's stroke)that described a case that was paternally inherited, but the argument fellon deaf dr ears.I have many, many questions and hope to learn a lot from you all. Our pedneuromuscular specialist did think that beginning supplements (carnitor andCoQ10) is reasonable, and I'm currently looking for any and all advice onthat matter. He gave us scripts for carnitor and the dosage range for CoQ10.One question I have re: the CoQ10 is does anyone know if it's advisable to"cut down" the dose if you're using the Q-gel (hydrosoluble) form... I keepgetting told by the folks at the various vitamin companies that a lower doseof Q-gel is just as effective as a higher dose of "regular" CoQ10... and I'mgetting very, very confused. The cost of starting the family on it isstaggering to begin with, but if/when we do it, we sure want to be doing itin the most useful, cost-effective way. So far, only my husband has startedthe carnitor.... thought being that he could better recognize adverseeffects of it, as the dr was very concerned about side effects. We wentahead and started the carnitor because it was "on hand" while we try tofigure out how/where best to get CoQ10.I'm also interested in hearing other people's experiences with biopsyreports from Dr Shoffner. I'm wondering just how "funky" my daughter'soxphos numbers are. And I'm also curious about what to expect in the way ofa final report from Dr Shoffner. Also, has anyone seen Dr Shoffner'sassociate, Dr Dougherty (she's the director of "metabolic" part of the lab,wiht him doing the "molecular" part)?Thanks--- BethPlease contact mito-owner with any problems or questions.

[Guest guest]

Hi everyone,

I don't have a ton of time right now, but I thought I would post my intro to

the group.

My name is and I am 29. I am a mother of three. I am currently

starting the south beach diet. (today is my first day)

I don't have too lofty of goals.. right now I just want to buy my jeans in

the regular ladies department instead of the " plus size " section. I am

currently wearing a size 18. (ick) I also want to wear a shirt with out an x in

front of the size.

I wish everyone luck in losing those unwanted pounds.

Wanna vent about your eBay auctions?? Have a problem with a seller or buyer

that you want to talk about? Welcome Home! Please come check out my first

loop!

http://groups.yahoo.com/group/Gymboloopiesvent