Newbie

[Guest guest]

Your body goes thru sooo many changes that I would say that your baby should

be weened first. you may not get the proper noutrition right away for

breastfeeding, I actually doubt that you would. congratulations on your baby

coming :

) and good luck with surgeyr later.

God Bless, Robin

Wife to Pup for 15 years

Mommy to-

and

(twin boys, 8 years) and

Daughter Madison- age 5 1/2

and new Mommy to-

Emerson Roger born

July 28, 2004 at 4:11 am

8lbs 7 oz, 20 1/2 inches long.

[Guest guest]

Welcome Jeny! You have been through quite the ordeal! You sound like a

strong gal and will do great with your new one. I'm so excited for you.

I'm Sandy, I live outside Buffalo, NY and have lived here for about 8 years

now. I moved here from Arizona where my husband is from. I have always

been heavy through childhood and finally had WLS on 5/21/03. My high weight

was 338 and one of the reasons (besides health) to have WLS was because I

wanted to have a baby and I was having such difficulty. We spent 2 years

trying to conceive and went through one miscarriage in 2000 and then I got

preggo less than a year out from surgery and had another miscarriage. Now,

I'm 14 weeks along and everything is going very well. Mission (almost)

accomplished.

I have a stepson who lives with us, he's 10 and a great kid. He's very

excited about this pregnancy.

We're so glad you are here.

~Sandy (Buffalo, NY)

RNY Dr.Caruana - 5/21/03

330/198

Expecting #1 - 3/17/05

14 Weeks

-- Newbie

Hello everyone. My name is Jeny and I live in the Twin Cities, MN.

I had a BPD/DS with Dr. Elariny in Arlington, VA in July of 2001 and

am currently 30 weeks pregnant with my first child.

My stats... I had a high weight of 412, weight at surgery of about

405, pre pregnancy low weight of about 185 and went between 185 and

195ish pretty consistently. I honestly don't know exactly what my

pre pregnancy weight was. I had two tummy tucks (last one went

around my whole torso), my arms tucked, breasts lifted, and was

scheduled to have my legs done in May when I found out I was

preggers. My doctors say I probably have about 20 lbs of skin on my

body still and that with that weight gone I would have more than

passed my goal weight of 175. I am 5'9 " and have very large bones.

Pregnancy situation: I have been told for 10 years I probably would

have to see a fertility specialist when/if I was ready to have

kids. I have cystic fibroids or something along those lines

(excessive and large, up to tennis ball size) cysts on my ovaries,

the name of that escapes me at this point, darn pregnancy. So it

would be very difficult for me to get pregnant at all, much less

easily. Then two years ago this week I ended up with a terrible

infection in one of my falopian tubes and they had to go in and take

that and my ovary out in an emergency surgery. At that point they

said I had a 70% chance of never having my own kids.

In February a condom broke, and I became a miracle. For the next 6

weeks I continued on my incredibly dangerous lifestyle of rock

climbing, learning how to snow board, going to Mardi Gras, Partying

like nobody's business for about 5 of the 6 weekends, including a

ski trip where I bruised my tail bone so badly my PCP decided it

might be broken. I was scheduling the appointment to go in for the

x ray when the date occured to me and I bought the pregnancy test.

And then bought 5 more just to be sure I wasn't doing something

wrong. I was terrified, thrilled, excited, and devastated all at

the same time.

I hadn't been with the father all that long, but there was no

question on whose it is. He and I didn't exactly see eye to eye on

if I should have the kid or not, so now I am on my own. I left my

great downtown single in the city lifestyle in Chicago's Lincoln

Park and moved back to the place I grew up, Twin Cities, MN where my

family lives. Quit my job, got a new one at 16 weeks pregnant, was

very lucky and have a great boss who is very understanding and

supportive.

My family has been amazing, but sometimes its hard because of the

many challenges that we face as post WLS and pre natal. I battle

with 9 vials of blood drawn every 2 months, and 3 or 4 every month,

struggle with weight gain, worry about fetal weight and yesterday

was put on partial bed rest because at 30 weeks the baby's head is

engaged, and already in position and they are afraid that I will go

into pre term labor. I spent 2 hours on a monitor yesterday to make

sure that I wasn't in labor, and now am having to go to part time at

work. I don't know if this has anything to do with my WLS or not,

but I do know the anemia and probably the adema has quite a bit to

do with it. Are any of you having any problems with either of

those? What about weight gain? Any other DS WLSers that are PG out

there? HELP! I desperately need to connect!

=)

Anyway, now that I have babbled, and carried on, that is me, and my

90 second life story (although it might have been a bit longer than

that, sorry) and I would love to hear about some of yours. Either

email me personally at jenykell@..., or post here. I can't

wait to hear from you.

Jeny

Children are a blessing, and a gift from the Lord. -Psalm 127:3

[Guest guest]

welcome to the group jeny and congrats on being pregnant after being told for so

long you wouldn't be. i had lap RNY 6 mnths ago and am 4 months pregnant. i am

having problems keeping things downa nd with terrible morning sickness and low

on all my lbas, butt hat's about it, jsut trying to stay healthy and eat nad

drink what i can. i've lost 124 lbs total in 6 months and 40 jsut since being

pregnant. sorry i can't help with your situation, but jsut wanted to say

welcome...

aka mom2ben99 (jennilee75@...)

Kay Independent Beauty Consultant

http://www.marykay.com/koopmans

I have all your summer care needs...tanning lotion, sunblock, even sunblock for

your lips, get yours today!

Newbie

Hello everyone. My name is Jeny and I live in the Twin Cities, MN.

I had a BPD/DS with Dr. Elariny in Arlington, VA in July of 2001 and

am currently 30 weeks pregnant with my first child.

My stats... I had a high weight of 412, weight at surgery of about

405, pre pregnancy low weight of about 185 and went between 185 and

195ish pretty consistently. I honestly don't know exactly what my

pre pregnancy weight was. I had two tummy tucks (last one went

around my whole torso), my arms tucked, breasts lifted, and was

scheduled to have my legs done in May when I found out I was

preggers. My doctors say I probably have about 20 lbs of skin on my

body still and that with that weight gone I would have more than

passed my goal weight of 175. I am 5'9 " and have very large bones.

Pregnancy situation: I have been told for 10 years I probably would

have to see a fertility specialist when/if I was ready to have

kids. I have cystic fibroids or something along those lines

(excessive and large, up to tennis ball size) cysts on my ovaries,

the name of that escapes me at this point, darn pregnancy. So it

would be very difficult for me to get pregnant at all, much less

easily. Then two years ago this week I ended up with a terrible

infection in one of my falopian tubes and they had to go in and take

that and my ovary out in an emergency surgery. At that point they

said I had a 70% chance of never having my own kids.

In February a condom broke, and I became a miracle. For the next 6

weeks I continued on my incredibly dangerous lifestyle of rock

climbing, learning how to snow board, going to Mardi Gras, Partying

like nobody's business for about 5 of the 6 weekends, including a

ski trip where I bruised my tail bone so badly my PCP decided it

might be broken. I was scheduling the appointment to go in for the

x ray when the date occured to me and I bought the pregnancy test.

And then bought 5 more just to be sure I wasn't doing something

wrong. I was terrified, thrilled, excited, and devastated all at

the same time.

I hadn't been with the father all that long, but there was no

question on whose it is. He and I didn't exactly see eye to eye on

if I should have the kid or not, so now I am on my own. I left my

great downtown single in the city lifestyle in Chicago's Lincoln

Park and moved back to the place I grew up, Twin Cities, MN where my

family lives. Quit my job, got a new one at 16 weeks pregnant, was

very lucky and have a great boss who is very understanding and

supportive.

My family has been amazing, but sometimes its hard because of the

many challenges that we face as post WLS and pre natal. I battle

with 9 vials of blood drawn every 2 months, and 3 or 4 every month,

struggle with weight gain, worry about fetal weight and yesterday

was put on partial bed rest because at 30 weeks the baby's head is

engaged, and already in position and they are afraid that I will go

into pre term labor. I spent 2 hours on a monitor yesterday to make

sure that I wasn't in labor, and now am having to go to part time at

work. I don't know if this has anything to do with my WLS or not,

but I do know the anemia and probably the adema has quite a bit to

do with it. Are any of you having any problems with either of

those? What about weight gain? Any other DS WLSers that are PG out

there? HELP! I desperately need to connect!

=)

Anyway, now that I have babbled, and carried on, that is me, and my

90 second life story (although it might have been a bit longer than

that, sorry) and I would love to hear about some of yours. Either

email me personally at jenykell@..., or post here. I can't

wait to hear from you.

Jeny

Children are a blessing, and a gift from the Lord. -Psalm 127:3

[Guest guest]

welcome to the group jeny and congrats on being pregnant after being told for so

long you wouldn't be. i had lap RNY 6 mnths ago and am 4 months pregnant. i am

having problems keeping things downa nd with terrible morning sickness and low

on all my lbas, butt hat's about it, jsut trying to stay healthy and eat nad

drink what i can. i've lost 124 lbs total in 6 months and 40 jsut since being

pregnant. sorry i can't help with your situation, but jsut wanted to say

welcome...

aka mom2ben99 (jennilee75@...)

Kay Independent Beauty Consultant

http://www.marykay.com/koopmans

I have all your summer care needs...tanning lotion, sunblock, even sunblock for

your lips, get yours today!

Newbie

Hello everyone. My name is Jeny and I live in the Twin Cities, MN.

I had a BPD/DS with Dr. Elariny in Arlington, VA in July of 2001 and

am currently 30 weeks pregnant with my first child.

My stats... I had a high weight of 412, weight at surgery of about

405, pre pregnancy low weight of about 185 and went between 185 and

195ish pretty consistently. I honestly don't know exactly what my

pre pregnancy weight was. I had two tummy tucks (last one went

around my whole torso), my arms tucked, breasts lifted, and was

scheduled to have my legs done in May when I found out I was

preggers. My doctors say I probably have about 20 lbs of skin on my

body still and that with that weight gone I would have more than

passed my goal weight of 175. I am 5'9 " and have very large bones.

Pregnancy situation: I have been told for 10 years I probably would

have to see a fertility specialist when/if I was ready to have

kids. I have cystic fibroids or something along those lines

(excessive and large, up to tennis ball size) cysts on my ovaries,

the name of that escapes me at this point, darn pregnancy. So it

would be very difficult for me to get pregnant at all, much less

easily. Then two years ago this week I ended up with a terrible

infection in one of my falopian tubes and they had to go in and take

that and my ovary out in an emergency surgery. At that point they

said I had a 70% chance of never having my own kids.

In February a condom broke, and I became a miracle. For the next 6

weeks I continued on my incredibly dangerous lifestyle of rock

climbing, learning how to snow board, going to Mardi Gras, Partying

like nobody's business for about 5 of the 6 weekends, including a

ski trip where I bruised my tail bone so badly my PCP decided it

might be broken. I was scheduling the appointment to go in for the

x ray when the date occured to me and I bought the pregnancy test.

And then bought 5 more just to be sure I wasn't doing something

wrong. I was terrified, thrilled, excited, and devastated all at

the same time.

I hadn't been with the father all that long, but there was no

question on whose it is. He and I didn't exactly see eye to eye on

if I should have the kid or not, so now I am on my own. I left my

great downtown single in the city lifestyle in Chicago's Lincoln

Park and moved back to the place I grew up, Twin Cities, MN where my

family lives. Quit my job, got a new one at 16 weeks pregnant, was

very lucky and have a great boss who is very understanding and

supportive.

My family has been amazing, but sometimes its hard because of the

many challenges that we face as post WLS and pre natal. I battle

with 9 vials of blood drawn every 2 months, and 3 or 4 every month,

struggle with weight gain, worry about fetal weight and yesterday

was put on partial bed rest because at 30 weeks the baby's head is

engaged, and already in position and they are afraid that I will go

into pre term labor. I spent 2 hours on a monitor yesterday to make

sure that I wasn't in labor, and now am having to go to part time at

work. I don't know if this has anything to do with my WLS or not,

but I do know the anemia and probably the adema has quite a bit to

do with it. Are any of you having any problems with either of

those? What about weight gain? Any other DS WLSers that are PG out

there? HELP! I desperately need to connect!

=)

Anyway, now that I have babbled, and carried on, that is me, and my

90 second life story (although it might have been a bit longer than

that, sorry) and I would love to hear about some of yours. Either

email me personally at jenykell@..., or post here. I can't

wait to hear from you.

Jeny

Children are a blessing, and a gift from the Lord. -Psalm 127:3

[Guest guest]

Thanks for all the input. We have just started to get

hyper-organized, mostly because things have really

rolled downhill in the last few months. 2 of the boys

will be on feeding tubes within 2-3 months, 4 of the

kids are on CPAP, all take the 'cocktail' supplements,

plus others for GI and neuro issues.

I had done about half a degree in Biochemistry (until

medical issues/appts took up all the 'extra' time.),

have worked in a chem lab in pharmaceutical for 8

years, and have remained in pharma (doing IT project

management) - so research is easier. I have an

account to access almost all online medical journals.

Being able to speak the language makes doctors pay

attention, especially ones who might be newer (like ER

residents and first year fellows).

We are fortunate that we are only abut an hour from

Boston, so have a lot of access to good medical care

for all the specialists. Also, our pediatrician

interned at one of the hospitals and we have an inside

track for appointments. For GI, physiatry, and some

other specialists, we can walk in any time and speak

to at least a nurse practioner.

We have a binder with customized 'flow sheets' for

each child that have a weeks worth of meds (with check

boxes so we know if one of us has given it out), and

also spots to write in temp, bp, heart rate, and

notes/comments/questions.

Our biggest problem is the house. Not wheelchair

accessible and also running out of room for meds and

equipment. We have an entire kitchen cabinet

commandeered for meds, equipment takes up half the

linen closet. Unfortunately. the prices of housing in

the Northeast makes it impossible to get something

else. Moving to a cheaper part of the country is no

longer an option in order to give continuity on care

for the kids.

Sorry to crab, but at least it feels good to have a

place to crab. Makes it better to know that there are

others out there that have far greater mountains to

climb than we do, If you guys can do it, so can we!

Rod

--- Darla Klein wrote:

> Welcome to the group. My hubby and I have 11

> children presently.

> Seven biological, two adopted, and two new foster

> children which we should

> adopt in about 6 months. Of our biological

> children, our two youngest are

> very affected with Mito (4 and 15 months), our

> oldest is next most affected

> (almost 17), and several of our other kids (if not

> all) have symptoms that

> make us assume they have it but presently at a less

> amount. I also have am

> assumed to have Mito due to many of the same issues

> my 2 youngest daughters

> and oldest son have. My oldest son doesn't

> currently take any meds and we

> have been just staring to consider placing him on

> the cocktail but he isn't

> sure how much he wants to take. He is doing ok as

> long as he doesn't

> overdue it in his activity and doesn't fast, etc.

> With the two youngest

> girls, we have had to intervene in many ways to keep

> them healthy. As you

> can tell from the end of this message, they deal

> with lots of issues. Both

> are on different meds and Mito cocktail supplements,

> both are g-tube fed,

> both use monitors, see several therapists, and tons

> of docs. We, as I am

> sure most on this list with several affected, need

> to just take it day by

> day. Our focus goes back and forth as to who needs

> the most attention

> currently and the issues we deal with continually

> change.

> One trick I have found to help not only myself

> but also the docs is to

> sit down and type out pages of info on each

> individual child and make a copy

> and take it to the docs appointments with me. One

> copy I give the doc and

> one I keep. I write what issues have changed, what

> our concerns are, what

> our questions are, etc. It helps the docs keep the

> kids straight so they

> know who they are treating for what and helps me to

> keep a good focus during

> the doc appointment so I don't miss anything

> important I want to discuss. I

> do this for each specialist I see. They have really

> found it helpful, so

> they tell me.

> Doing meds: We keep a flat with a couple of

> towels on it to separate

> medical syringes (often rolling up one child's

> syringes to not mix them) and

> then pull out all the meds onto a table (or bed) and

> then get all meds

> ready. Asenath had 12 different things she takes

> and Zipporrah takes 5

> currently. We keep a sheet with meds and their

> amounts posted on our

> medical cabinet so if changes occur, anyone who does

> the meds knows how much

> to give. Ordering meds is the biggest challenge!

> We keep records as to

> when each med was last ordered and when the next

> should be ordered. This

> helps us not catch ourselves " with our pants half

> down " scrambling to get

> meds filled before they run out. We post separate

> sheets for each child on

> the med cabinet for this purpose and keep a little

> paper with all the RX

> numbers in my schedule book so I can easily call for

> refills. We get most

> through Mayo pharmacy so they are delivered rather

> than having to run around

> picking them up. We do the same thing with all the

> G-tube equipment. We

> have three children in our home using G-tubes.

> (Joey, our foster son, has

> lots of special needs and uses one as well as my two

> girls) Thus, we need

> to keep supplies of Pediasure with Fiber (420 cans

> per month- LOL) and

> G-tube bags on hand as well as attachment pieces,

> burp tubes, extra mic-key

> buttons, nebulizer equipment, pulse-ox equipment,

> apnea monitor equipment,

> oxygen, etc. ALL of these we get supplied through a

> local home medical

> supply company so it comes directly to my home.

> These items we also keep

> track of on paper on the medical cabinet. At times

> it can be a lot to

> remember and we find ourselves scrambling to get

> " something " but the lists

> help so much!

> I am also the type of person who likes to know

> what I am dealing with

> so research (and this group) is of utmost

> importance. Usually I am the one

> to say, my child needs to see a certain specialist

> and then speak to our

> geneticist who will then either set the appointment

> up or transfer me to

> them to set it up. I make sure I am totally

> involved in setting the

> appointments up so trips to Mayo are as short as

> possible. I am sure you

> have found that at times it seems there is no end to

> doc appointments so I

> think this is a very important thing to be involved

> in. If you are

> involved, it also helps you to get to know each

> specialist's scheduler and

> can get in quicker cause they know you and your

> needs, and know the visit is

> important. Only you know how many appointments you

> want per day and how

> long you want to be at the clinics or how many you

> wish to get seen during

> the visits. Whether you see someone locally or

> farther away, it helps to be

> part of the team.

> I am sure this is probably more than you

> requested, but hope something

> helps you. Feel free to ask anything else and I

> will try to help you. This

> is a great group and I am sure they will have much

> more to add.

>

> See www.caringbridge.org/ia/mitomomof9 and

> www.heartbeatsformito.org to see

> a photo look into what Mito looks like

> Darla: mommy to

> Asenath (4) Mito, CNS Vasculitis, strokes,

> migraines, seizures, G-tube,

> hypotonicity, disautonomy, SID, global delays,

> asthma, cyclic vomiting,

> bladder issues, wheelchair for distances, eye

> issues, autistic behaviors,

> gastric emptying issues...

> Zipporrah (14 months) Mito, strokes, neuro-motor

> planning dys., SID, GERD,

> dysphasia, 100% G-tube fed, speech delays, extreme

> fatigue, excessive

> phlegm, asthma, trach issues, aberrant subclavian

> artery, disautonomy,

> hypertonicity, migraines, possible seizures, dumping

> syndrome, iron

> deficiency, ...

> Luke (16), Leah (14), Rachael (13), Isaac (10),

> Tirzah (8), Kezia (4), &

> Marquis (3), Joey & (12 months) (some with

> Mito symptoms)

>

>

> newbie

>

>

> >

> >

> > My name is Rod; my wife and 5 kids have all been

> > diagnosed with mitochondrial myopathy. Four sons,

> > 17,15,13, and 3 and one daughter, 7. Not telling

> how

> > old my wife and I are, lol.

> >

> > Two of the boys have had multiple significant

> issues

> > since birth, others were less severe but have

> flared

> > over the last couple of years. The first

> diagnosis

> > was on the most effected son 3 years ago when he

> was

> > 12. After our 3rd child (a surprise) and before

> > trying for a daughter, we went through genetic

> > counseling, not wanting to have another sick child

> > (like our second). We were told at the time that

> our

> > son;s illnesses were a fluke (not evaluated for

> Mito

> > at that time). My wife has had chronic issues

> with

> > fatigue (even before having 5 kids) and other

> minor

> > health things all her life.

> >

> > I would be intersted in hearing from other

> families

> > that have 3+ sick kids and how they manage meds,

> > doctors, etc.

> >

>

=== message truncated ===

=====

************************************

" The kids are not mine, they are God's and I have them on loan.

There are some days I want to trade up, but my credit is really bad. "

-Donna Thorell

__________________________________________________

[Guest guest]

Welcome !

Well, you couldn't have picked a better doctor!! Dr. P is the best!!

Good luck and we look forward to hearing about the arrival of your

daughter.

Shook

Retail Operations Manager/Baking Instructor

Vie de France Yamazaki, Inc.

2070 Chain Bridge Rd. Suite 500

Vienna, VA 22182

x374

x374

fax

[Guest guest]

Welcome !

Well, you couldn't have picked a better doctor!! Dr. P is the best!!

Good luck and we look forward to hearing about the arrival of your

daughter.

Shook

Retail Operations Manager/Baking Instructor

Vie de France Yamazaki, Inc.

2070 Chain Bridge Rd. Suite 500

Vienna, VA 22182

x374

x374

fax

[Guest guest]

Hi, I just wanted to say, I'm in a similar situation - currently 29

weeks and we found out that our baby girl has bilateral clubfeet

during our 20 week (and 24 and 28) week ultrasound.

I didn't know anything about it either (and it's our first baby!) but

this group has been wonderful. Good luck to you too. I'm sure we'll

both be having similar questions.

Yuuko

> I have just joined the group after having met with Dr. Ponseti.

> I am pregnant with my second child and found out at an ultra sound

> at 20 weeks that our baby girl has a club foot. My husband and I were

> both terrified and very uneducated. We are now in our 28th week, have

> had several ultra sounds and have found that both of our daughters feet

> are club. We are fortunate enough to live close to Iowa City and had a

> consult this week with Dr. Ponseti. He was fantastic, easy to talk to

> and very open with all of our questions. The clinic and other moms

> that I met during our appointment recommended this group and I just

> wanted to join and introduce myself. As I am sure I will have many

> questions throughout our journey.

>

> Reese

[Guest guest]

Hi, I just wanted to say, I'm in a similar situation - currently 29

weeks and we found out that our baby girl has bilateral clubfeet

during our 20 week (and 24 and 28) week ultrasound.

I didn't know anything about it either (and it's our first baby!) but

this group has been wonderful. Good luck to you too. I'm sure we'll

both be having similar questions.

Yuuko

> I have just joined the group after having met with Dr. Ponseti.

> I am pregnant with my second child and found out at an ultra sound

> at 20 weeks that our baby girl has a club foot. My husband and I were

> both terrified and very uneducated. We are now in our 28th week, have

> had several ultra sounds and have found that both of our daughters feet

> are club. We are fortunate enough to live close to Iowa City and had a

> consult this week with Dr. Ponseti. He was fantastic, easy to talk to

> and very open with all of our questions. The clinic and other moms

> that I met during our appointment recommended this group and I just

> wanted to join and introduce myself. As I am sure I will have many

> questions throughout our journey.

>

> Reese

[Guest guest]

,

How close do you live to Iowa City? We live in Iowa City (ok, so

outside the city limits). My 7 year old was treated by Dr. Weinstein

for his bilateral clubfeet.

mreese1818 wrote:

> I have just joined the group after having met with Dr. Ponseti.

> I am pregnant with my second child and found out at an ultra sound

> at 20 weeks that our baby girl has a club foot. My husband and I were

> both terrified and very uneducated. We are now in our 28th week, have

> had several ultra sounds and have found that both of our daughters feet

> are club. We are fortunate enough to live close to Iowa City and had a

> consult this week with Dr. Ponseti. He was fantastic, easy to talk to

> and very open with all of our questions. The clinic and other moms

> that I met during our appointment recommended this group and I just

> wanted to join and introduce myself. As I am sure I will have many

> questions throughout our journey.

>

> Reese

>

>

>

>

>

>

>

>

[Guest guest]

,

How close do you live to Iowa City? We live in Iowa City (ok, so

outside the city limits). My 7 year old was treated by Dr. Weinstein

for his bilateral clubfeet.

mreese1818 wrote:

> I have just joined the group after having met with Dr. Ponseti.

> I am pregnant with my second child and found out at an ultra sound

> at 20 weeks that our baby girl has a club foot. My husband and I were

> both terrified and very uneducated. We are now in our 28th week, have

> had several ultra sounds and have found that both of our daughters feet

> are club. We are fortunate enough to live close to Iowa City and had a

> consult this week with Dr. Ponseti. He was fantastic, easy to talk to

> and very open with all of our questions. The clinic and other moms

> that I met during our appointment recommended this group and I just

> wanted to join and introduce myself. As I am sure I will have many

> questions throughout our journey.

>

> Reese

>

>

>

>

>

>

>

>

[Guest guest]

Hi ,

I'm glad we got to meet you last Wednesday! Don't worry, you are in

the best of hands, and this group is incredibly supportive. Keep us

posted on how you and your little one are doing!

Caroline

[Guest guest]

Hi ,

I'm glad we got to meet you last Wednesday! Don't worry, you are in

the best of hands, and this group is incredibly supportive. Keep us

posted on how you and your little one are doing!

Caroline

[Guest guest]

Hi ,

Welcome to our group. It is nice to have you here.

Sorry to hear of the passing of your youngest daughter. :-(

I am also very fatigued and I sleep for 18 to 20 hours a day. Sometimes I

sleep for 48 hours straight without getting up to go potty or get a drink

or food. It is so debilitating. I know what you are going through. It is

like life is passing me by, actually it is. I spend more time in bed than

anything.

Do you plan on having any testing done on yourself?

Hugs,

Ann-Marie

At 05:37 PM 7/15/2005, you wrote:

>Greetings to all, another newbie here.

>

>Thought I should introduce myself.

>

>I am a 45 years old, happily married and mother of 3.

>

>I am not new to the disease. My youngest daughter had a suspected mito

>disorder and was treated as such, yet 3 months after she died (during

>an extended seizure) we got back her last test results from Mayo that

>were all negative.

>

>Still she did respond well to Carnitor and the addition of the mito

>cocktail. Just too many other issues by then....

>

>I have had increasing sypmtoms of mito in the last 6 months(fatique! I

>use to do so much), and increasing episodes of vomiting. I do take CoQ

>2x/day and regret any day I forget.

>

>I have done no testing on myself.

>

>I look forward to learning much from you all - some of you I know from

>the kids mito list-

>

> Lee

>

>

>

>

>

>

>

>

>

>

>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]

Welcome to the group. I'm sorry you have to be here, but I think you

will find us verry caring.

I'm sorry to hear about the loss of your daughter.

laurie

> Greetings to all, another newbie here.

>

> Thought I should introduce myself.

>

> I am a 45 years old, happily married and mother of 3.

>

> I am not new to the disease. My youngest daughter had a suspected mito

> disorder and was treated as such, yet 3 months after she died (during

> an extended seizure) we got back her last test results from Mayo that

> were all negative.

>

> Still she did respond well to Carnitor and the addition of the mito

> cocktail. Just too many other issues by then....

>

> I have had increasing sypmtoms of mito in the last 6 months(fatique! I

> use to do so much), and increasing episodes of vomiting. I do take CoQ

> 2x/day and regret any day I forget.

>

> I have done no testing on myself.

>

> I look forward to learning much from you all - some of you I know from

> the kids mito list-

>

> Lee

>

>

>

>

>

>

>

>

>

>

> 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]

Dear Ann Marie-

With two young children (9 & 6) on the ground there is not much

opportunity for me to get as much sleep as I would like.

It has been super (90+) for 10 days and that cumulative heat strain is

really starting to take a toll on me. Given the chance to sleep- I

always take it but the two kids are typical high energy kids. (So far

no signs of anything except good health. One is prone to getting ill-

the other is super healthy like their dad.)

testing? I'm not sure. I have just started to consider it within the

past few days. The cyclical vomiting has cranked up. Before it was very

occasional. The patches are getting more frequent and longer, fatique

is really cranking up also. Enough so that I joined this group.

My usual life is FULL. I work a couple of part time jobs(3), my husband

and I live on 110 beautiful acres and try and farm - small scale. We

have pigs, chickens and one delightful dairy cow named belle. We

are both on the local volunteer fire department and are 1st Responders.

I had up until a few months ago a support group for parents of disabled

children and ran a grant program for the same. I let the support group

collapse and handed off the grant program. This is the first time in 15

years that I have not had a huge garden that would feed 6 families. I

just didn't think I would be able to keep up with the garden. To those

that know me they are astounded that I do not have a garden this summer.

Ah, I'm rambling- I do that.

I look forward to meeting all and learning from each of you.

Blessings,

Lee

[Guest guest]

Laurie,

Thanks for the welcome.

I know this will become a valuable resource for me.

Blessings,

Lee

[Guest guest]

Hello ,,

I also take the Carnitor and Qgel though low doses since I have mild symptoms.

My sister who was the first diagnosed back in 1996 also responded well to the

carnitor, DCA, and the Q10 she was on. However, as her sister in law and the

doctors pointed out that it was too little too late.

Besides showing signs of dystmobility and severe constipation and attention,

behavioral issues which the Carniqgel helps, we are having my 12 yr old son take

them to build up the vitamins in his body. He started taking them about 2 yrs

ago--I should have started it back in 1996 when my sister was diagnosed. My

brother in law also has his son on the cocktail--he shows some signs of MELAS

but not severe so has not been tested. My sisters boy is now 14.

The Carnitor and CoQ10 are vitamins that everyone needs also.

Janet Sample

Newbie

Greetings to all, another newbie here.

Thought I should introduce myself.

I am a 45 years old, happily married and mother of 3.

I am not new to the disease. My youngest daughter had a suspected mito

disorder and was treated as such, yet 3 months after she died (during

an extended seizure) we got back her last test results from Mayo that

were all negative.

Still she did respond well to Carnitor and the addition of the mito

cocktail. Just too many other issues by then....

I have had increasing sypmtoms of mito in the last 6 months(fatique! I

use to do so much), and increasing episodes of vomiting. I do take CoQ

2x/day and regret any day I forget.

I have done no testing on myself.

I look forward to learning much from you all - some of you I know from

the kids mito list-

Lee

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]

Ann Marie-

I hope you understand the spirit of this comment and don't get

offended--but can you imagine the sense of panic that your comments

fill me with!!!! I feel as if there is a ticking clock.....

-yes I am being careful in the heat. My dear husband is looking at me

sideways with my decreased " work productivity " . He too is noodling

around the possiblities of how I have been feeling. He is scared and

trying hard to deny it.

I am considering the different testing options, I down loaded a

couple of files from the list here- I am familiar with the Mito

resources out there b/c of our daughter. I am re-reading them with an

eye towards myself and not someone else. It changes the things that

you see in the papers. She went to Mayo but we were trying to get her

to Cohen, just ran out of time.

Thanks for your reply-I look forward to getting to know you.

Blessing-

PS---Land here is cheaper than where you are at(I'm a Northerner)-

although we still have been lucky and scrapped to acquire the lovely

parcel we live on.

[Guest guest]

It sounds like you are putting your options in order. That will be helpful.

laurie

> Ann Marie-

>

> I hope you understand the spirit of this comment and don't get

> offended--but can you imagine the sense of panic that your comments

> fill me with!!!! I feel as if there is a ticking clock.....

>

> -yes I am being careful in the heat. My dear husband is looking at me

> sideways with my decreased " work productivity " . He too is noodling

> around the possiblities of how I have been feeling. He is scared and

> trying hard to deny it.

>

> I am considering the different testing options, I down loaded a

> couple of files from the list here- I am familiar with the Mito

> resources out there b/c of our daughter. I am re-reading them with an

> eye towards myself and not someone else. It changes the things that

> you see in the papers. She went to Mayo but we were trying to get her

> to Cohen, just ran out of time.

>

> Thanks for your reply-I look forward to getting to know you.

>

> Blessing-

>

> PS---Land here is cheaper than where you are at(I'm a Northerner)-

> although we still have been lucky and scrapped to acquire the lovely

> parcel we live on.

>

>

>

>

>

>

>

>

>

> 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]

Just want to mention that *most* of us need Carnitor and CoQ10, but I

and a few others can't tolerate them. I got grand mal seizures when

on Carnitor (documentation for Carnitor mentions seizures as a

possible side effect), never had them before or since. CoQ10 gives

me severe insomnia.

I am currently on NADH for my mitochondrial encephalomyopathy

(complete Complex I defect by fresh muscle biopsy), and also try to

keep on an Atkins-type diet. My symptoms get much worse when I am

off either of them.

There is a " mito cocktail " list in the files section, I believe, to

show what supplements or medications are recommended for mito

patients.

Take care,

RH

> Hello ,,

>

> I also take the Carnitor and Qgel though low doses since I have

mild symptoms.

>

> My sister who was the first diagnosed back in 1996 also responded

well to the carnitor, DCA, and the Q10 she was on. However, as her

sister in law and the doctors pointed out that it was too little too

late.

>

> Besides showing signs of dystmobility and severe constipation and

attention, behavioral issues which the Carniqgel helps, we are having

my 12 yr old son take them to build up the vitamins in his body. He

started taking them about 2 yrs ago--I should have started it back in

1996 when my sister was diagnosed. My brother in law also has his

son on the cocktail--he shows some signs of MELAS but not severe so

has not been tested. My sisters boy is now 14.

>

> The Carnitor and CoQ10 are vitamins that everyone needs also.

>

> Janet Sample

> Newbie

>

>

> Greetings to all, another newbie here.

>

> Thought I should introduce myself.

>

> I am a 45 years old, happily married and mother of 3.

>

> I am not new to the disease. My youngest daughter had a suspected

mito

> disorder and was treated as such, yet 3 months after she died

(during

> an extended seizure) we got back her last test results from Mayo

that

> were all negative.

>

> Still she did respond well to Carnitor and the addition of the

mito

> cocktail. Just too many other issues by then....

>

> I have had increasing sypmtoms of mito in the last 6 months

(fatique! I

> use to do so much), and increasing episodes of vomiting. I do

take CoQ

> 2x/day and regret any day I forget.

>

> I have done no testing on myself.

>

> I look forward to learning much from you all - some of you I know

from

> the kids mito list-

>

> Lee

>

>

>

>

>

>

>

>

>

>

> 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]

Lyn

Welcome to the group. You sound like you have been through the mill

with your daughter. It must be so hard to watch her deal with so many

issues.

I haven't had chronic infections, but there are some on the list who

do. We have one member who is on " no mail " (I think) because she is

battling the vegetation problem. She has been in and out of the

hospital a great deal.

Her problems do sound like they could be mito. Maybe they can take a

muscle sample if they have to do surgery again. I would suggest it be

sent to one of the labs known for mito research, since it will be

frozen. Has she been on any of the supplements so far?

laurie

> Hi,

> I am " mummy " to a 22 year old daughter who has been dealing with

> multiple organ problems - myasthenia type muscle weakness, heart

> conduction problems leading to a pacemaker at 17, colonic dysmotility

> leading to a loop illeostomy when she was 20, her gal bladder stopped

> working so they took that out, her kidneys waste potassium and magnesium

> so she is on supplements and amelioride, and she had a splenic infarct

> thats

> lead to removing her spleen, has had trouble with infections and most

> recently has spent the past 10 months in the hospital because of chronic

> bacteremia and endocarditis which led to removing her pacemaker and wires,

> putting in a temporary one for 6 weeks, putting in a new pacemaker, then

> taking it our a month later during open heart surgery while they removed

> her

> growing heart vegitation (they also removed her thymus). Her new pacemaker

> is attached to the outside of her heart. The docs have tried three trials

> of no

> antibiotics, and this last time she had fevers up to 105.8 with rigors 3 to

> 4

> times a day. It took 6 days of three different IV antibiotics along with a

> fungicide to bring her fevers down (her wbc went up to 48.....thankfully it

> is

> back down to 10). She is taking IVIG every three weeks to help boost her

> immune system, and she gets epogen shots three times a week to boost her

> blood counts (she is chronically anemic). Her doctors have thought that she

> has a mitochondrial cytopathy, but her blood tests have been negative for

> the

> DNA mutations). I was wondering if anyone knew of a correlation between

> chronic infection and mitochondrial disorders.

>

> Thanks,

> Lyn

>

> Bonnie's website is www.caringbridge.org/az/bonniemarie

>

>

>

>

>

> 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]

Hi Lyn

I am so terribly sorry to hear about your daughter. She is so young to have

to deal with everything she's been through. I don't know much about

Mitochondrial cytopathy except that there are so many kinds that they can't even

test

for right now. I was diagnosed based on certain criteria. The doctors at the

Mayo Clinic are convinced I have it even though my tests also came back

negative. I was just diagnosed in March of this year so I don't really know

much.

I have notes and papers that my doctors have given me but I'll be honest, I

can't understand them.

Hang in there. If you don't mind, I'd like to include you and your family in

my prayers.

Darlene

[Guest guest]

Im not sure if anyone else has e mailed you back, but I think you might want

to e mail us ALL the ingredients in that syrup-Im pretty sure the syrup is

not an SCD OK food...am I right Jody and Carol?

Kerri

Newbie

> Hello:

>

> I am new to the diet, I just started my son (5) on Monday. I went to the

> DAN conference and I am convinced that I must try the SCD.

>

> I am confused about a number of thing. The boook Breaking the vivious

> cycle talks about phasing in certain food, if there is cramping and

> diarhea. However, my son has loose stool, no pain and no diarhea. Does

> this mean I can introduce lentils and beans and raw fruits and veggies. He

> is use to eating these foods and the symptom has always been loose stool

> and of course he has brain symptoms of PDD.

>

> Can anybody provide some views??

>

> Tara

>

>

[Guest guest]

-Hi - We are sort of in the same boat. Our 3 year old son has been

GFCF and egg and soy free for a year now with some good results but

we think SCD is the way to go. We are trying to phase in some SCD

recipes that he will eat and then gradually eliminate foods. I too

am very curious about when to add in fruits, vegetables, nut flours,

etc. because our son doesn't love meat and cannot eat eggs. We

Would really appreciate any information you get on that issue.

Thanks and good luck.

Randi

-- In pecanbread , " Tara " wrote:

>

> Hello:

>

> I am new to the diet, I just started my son (5) on Monday. I went

to the DAN conference and I am convinced that I must try the SCD.

>

> I am confused about a number of thing. The boook Breaking the

vivious cycle talks about phasing in certain food, if there is

cramping and diarhea. However, my son has loose stool, no pain and

no diarhea. Does this mean I can introduce lentils and beans and raw

fruits and veggies. He is use to eating these foods and the symptom

has always been loose stool and of course he has brain symptoms of

PDD.

>

> Can anybody provide some views??

>

> Tara

>

>