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Hi Lea,

I'm glad you found us and decided to join the group. I know you will find

support and a place of belonging as you participate and read from .

This is a great group and we seem to become like family. I'm looking forward to

hearing more from you but sorry for the reason you are here with us. We hope to

help make your days as pleasant as possible and remember that we are here 24/7.

Alice

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Lea

Welcome to the group. I think you will find information, support and

friendship.

laurie

>

> Reply-To:

> Date: Tue, 28 Dec 2004 14:48:43 -0000

> To:

> Subject: New Member

>

>

>

> Hi,

>

> I am new to this group. I was diagnosed about a year ago with a

> Complex I defect. The diagnosis was done from a muscle biopsy in

> Atlanta by Dr. Shofner.

>

> I have also been diagnosed with CFS/FMS which I think is actually

> part of the same problem. I have most of the CFS/FMS symptoms

> except I don't get the sore throats or lymph node pain. I have a

> lot of unrelenting fatigue, muscle pain and weakness, dizziness,

> brain fog and a host of other symptoms that I think are symptoms of

> Mito problems as well as CFS/FMS.

>

> I have been reading the posts for about a week now and am thrilled

> there is this resource online. I look forward to chatting with

> everyone.

> Lea

>

>

>

>

>

>

>

>

> 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.

>

>

>

>

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Hi Lea,

The connection between CFS/FMS and mitochondrial disease is interesting.

Some experts feel that a significant number of cases labeled as CFS/FMS are

really unrecognized mito. Others have suggested that a virus may serve as

trigger for mitochondrial disease. At least one mito expert has screened

CFS/FMS populations for certain known metabolic and mito mutations and found

that a significant number did indeed have mito or another inborn metabolic

disorder. In any case, I am glad you were able to get the mito diagnosis. It

seems like once the CFS/FMS label is applied, it can be difficult to get

anyone to look further.

Welcome,

Barbara

_____

From: LeaFish

Sent: Tuesday, December 28, 2004 8:49 AM

To:

Subject: New Member

Hi,

I am new to this group. I was diagnosed about a year ago with a

Complex I defect. The diagnosis was done from a muscle biopsy in

Atlanta by Dr. Shofner.

I have also been diagnosed with CFS/FMS which I think is actually

part of the same problem. I have most of the CFS/FMS symptoms

except I don't get the sore throats or lymph node pain. I have a

lot of unrelenting fatigue, muscle pain and weakness, dizziness,

brain fog and a host of other symptoms that I think are symptoms of

Mito problems as well as CFS/FMS.

I have been reading the posts for about a week now and am thrilled

there is this resource online. I look forward to chatting with

everyone.

Lea

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.

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Lea welcome to the " group " you will find new friends who are always

willing to help and be there when you need them. The group has been

fantastic for me. It is great to have others who can relate to all

that we go thru both physically and emotionally.

Once again welcome!

>

>

> Hi,

>

> I am new to this group. I was diagnosed about a year ago with a

> Complex I defect. The diagnosis was done from a muscle biopsy in

> Atlanta by Dr. Shofner.

>

> I have also been diagnosed with CFS/FMS which I think is actually

> part of the same problem. I have most of the CFS/FMS symptoms

> except I don't get the sore throats or lymph node pain. I have a

> lot of unrelenting fatigue, muscle pain and weakness, dizziness,

> brain fog and a host of other symptoms that I think are symptoms of

> Mito problems as well as CFS/FMS.

>

> I have been reading the posts for about a week now and am thrilled

> there is this resource online. I look forward to chatting with

> everyone.

> Lea

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Thanks for the welcome everyone. I look forward to posting a lot in the future.

I am full of questions, but I think I will try to read thru some of the info on

the main page to see if questions have been addressed previously.

It's great to have this resource available.

Lea

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Thanks for the welcome everyone. I look forward to posting a lot in the future.

I am full of questions, but I think I will try to read thru some of the info on

the main page to see if questions have been addressed previously.

It's great to have this resource available.

Lea

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Lea, welcome..this is a great support group.

everyone here is warm and supportive and there is alot of knowledge to be

found here.

welcome

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Lea, welcome..this is a great support group.

everyone here is warm and supportive and there is alot of knowledge to be

found here.

welcome

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Welcome to the group and congratulations on the births of your

children.

There is no question that is mundane, please do not apologize.

Answers to your questions:

1. Physicians using the Ponseti Method may not necessarily be listed

on Dr. Ponseti's site. It may be that they have not yet submitted

the necessary documentation of their patient cases for Dr. Ponseti's

review before having their names put on Dr. Ponseti's site. However,

it is important to note that there are many doctors out there who

claim to be using this method while modifying it. There is

a 'checklist' of questions that you may want to ask your son's

treating physician that will help you to determine whether or not the

doctor is following the method as it was written. You can find it at

's Ponseti Links site here:

http://pages.ivillage.com/ponseti_links/id13.html

2. Casting changes can be done anywhere from 5 to 9 days apart with

7 days being the 'norm' (with the exception of the final cast which

is usually worn for a period of 3 weeks). Patients who have

travelled long distances and are in 'lodging' during the casting are

sometimes put on a " fast track " and casted every 5 days in the

interest of time.

3. Infants are extremely adaptable. They learn what they 'know'.

If he starts treatment soon after birth, there really should be

no 'adjustment' phase. Once full correction has been achieved with

casting, infants are expected to begin wearing the brace immediately

following the final cast removal. There is usually a very short

adjustment phase (a few days) from cast to brace but for the most

part, it is short-lived and does not pose a problem for the infant.

4. Infants will initially wear the brace full time (23 hours per

day) for the first 3 months following casting - allowing one hour

free time for baths. Following this period, the time in the brace is

gradually reduced until it gets to nights (and naps) only (anywhere

from 10 - 14 hours) until treatment is completed. The age at which a

child is released from brace wear varies greatly. Initially, the

minimum recommended age of release was 2 years but more recently it

has been increased to age 3 and beyond following what seems to be a

rash of relapses in older children who, in retrospect, may have been

released from brace wear too early. It seems that more doctors are

beginning to recommend brace wear until at least age 3 and then for

as long as tolerated thereafter.

I hope that this has helped a little.

Daiga and Owen, 02/04/03

Unilateral LCF, FAB 14/24

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More than a little. I have never belonged to a community such as

this before. Will no doubt be in touch again.

Regards

>

> Welcome to the group and congratulations on the births of your

> children.

>

> There is no question that is mundane, please do not apologize.

>

> Answers to your questions:

>

> 1. Physicians using the Ponseti Method may not necessarily be

listed

> on Dr. Ponseti's site. It may be that they have not yet submitted

> the necessary documentation of their patient cases for Dr.

Ponseti's

> review before having their names put on Dr. Ponseti's site.

However,

> it is important to note that there are many doctors out there who

> claim to be using this method while modifying it. There is

> a 'checklist' of questions that you may want to ask your son's

> treating physician that will help you to determine whether or not

the

> doctor is following the method as it was written. You can find it

at

> 's Ponseti Links site here:

>

> http://pages.ivillage.com/ponseti_links/id13.html

>

> 2. Casting changes can be done anywhere from 5 to 9 days apart

with

> 7 days being the 'norm' (with the exception of the final cast

which

> is usually worn for a period of 3 weeks). Patients who have

> travelled long distances and are in 'lodging' during the casting

are

> sometimes put on a " fast track " and casted every 5 days in the

> interest of time.

>

> 3. Infants are extremely adaptable. They learn what

they 'know'.

> If he starts treatment soon after birth, there really should be

> no 'adjustment' phase. Once full correction has been achieved

with

> casting, infants are expected to begin wearing the brace

immediately

> following the final cast removal. There is usually a very short

> adjustment phase (a few days) from cast to brace but for the most

> part, it is short-lived and does not pose a problem for the infant.

>

> 4. Infants will initially wear the brace full time (23 hours per

> day) for the first 3 months following casting - allowing one hour

> free time for baths. Following this period, the time in the brace

is

> gradually reduced until it gets to nights (and naps) only

(anywhere

> from 10 - 14 hours) until treatment is completed. The age at

which a

> child is released from brace wear varies greatly. Initially, the

> minimum recommended age of release was 2 years but more recently

it

> has been increased to age 3 and beyond following what seems to be

a

> rash of relapses in older children who, in retrospect, may have

been

> released from brace wear too early. It seems that more doctors

are

> beginning to recommend brace wear until at least age 3 and then

for

> as long as tolerated thereafter.

>

> I hope that this has helped a little.

>

> Daiga and Owen, 02/04/03

> Unilateral LCF, FAB 14/24

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Hi

Congratulations on the birth of your twins!

We live in the UK - in Woldingham in Surrey. Our son started

treatment when he was 2 days old with a so called Ponseti

consultant. However, the consultant did not follow the method

correctly - after a few weeks,we ended up contacting Dr Ponseti

himself who advised us that we should ask Naomi in Manchester

to treat our son. She was trained by Dr Ponseti and is absolutely

fantastic and really cares about her 'ponseti kids'.If I had my time

over, I think I would have gone to Naomi in the first place, even

though it was quite a trek going to Manchester each week.

There is a checklist at http://www.clubfoot.co.za/checklist.htm

which lists some questions you can ask the consultant, and what

there answers should be. This should help give you peace of mind.

I'm sure Naomi won't mind if you contact her. She is at Booth

Hall Children's hospital in Manchester. I haven't got the phone

number to hand, but just ring and ask to speak to her secretary.

After the experience we had with our son, I cannot stress how

important it is to make sure your consultant has been properly

trained and is following the Ponseti method correctly. We wasted

about 10 weeks of his life in plaster casts - by the end of which he

had had an operation and his feet were not corrected - we had to

start again.

I see you have joined the Steps site - will keep an eye out for any

more messages, or if we can help in any way with details of our

experience etc. Even though it probably seems really traumatic now -

rest assured that once the right treatment is started, progress is

very quick, and

Hope this helps

Best wishes

Stella ('s mum, born 28/7/4/, bilateral clubfeet)

>

>

> My wife and I have been taken a little by shock on the news that

our

> son born on xmas day has talipes in his right foot but not left -

> his twin sister is fine. We were visited by a physio in hospital

> today and she ran through the Ponsetti treatment plan. I have

some

> general questions.

>

> 1. We live in the UK and our treating physicians are based at the

> Birmingham Childrens Hospital. I cannot locate them on the

Ponsetti

> site as qualified in the method - is the list out of date on that

> site?

>

> 2. It has been suggested that 7 days we caste is adequate but some

> sites refer to 5 days per caste.

>

> 3. Is it traumatic for the child - given he will have a sister of

> the same age who will not be having treatment.

>

> 4. What are the determining factors for the period when the bar

> stays in place - variously time periods of 2 - 5 years have been

> quoted.

>

> Apologies for these perhapd mundane queries but I have struggled

to

> search the chat room properly.

>

> Regards

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Hello!

Welcome to the group!

4 1/2 months ago I was where you are now (except for the twin thing

LOL). First let me assure you that this group is WONDERFUL!!! They

(we!) will discuss, suggest, listen, support & care about ANYTHING

you offer up!

Anyway, I can't comment on #1, because I don't live in the UK. #2 &

#4 were pretty well covered by the other reply you received. But

here's my comments on your other question:

> 3. Is it traumatic for the child - given he will have a sister of

> the same age who will not be having treatment.

From what I've read on here, every child's experience varies.

However, my daughter's doc was very caring & always made sure she

was calm before beginning casting. I think this helped her trust him

immensely right from the beginning. She would just stare up at him

with her big blue eyes & never cried AT ALL when he was casting her.

She would be slightly fussy for the first night & day after a new

cast was applied, only to be expected with the foot in a new

position. But nothing a little extra cuddling & milky wouldn't cure.

After her tenotomy, she slept ALL DAY, then took baby tylenol the

next day, only every 4 hrs. Otherwise, she was fine. Her transition

into the DBB was very easy. The only trouble was with figuring out

how to do night time nursing. She's been in the DBB 23/7 for 1 month

& 9 days now, and has adjusted very well. And the look of her

beautiful foot tells me that it was all worth it!!! (Her doc

actually was checking her left foot at her checkup yesterday, but

it's her right that was a CF!!)

Yes, it's annoying when they're in casts/DBB, and it may be hard not

to compare your son & daughter, being twins. I know I thought back

to my other 2 children (neither with CF) and thought about how much

easier it was, and how you could cuddle & bathe them. I went through

dark times where I hated everything--the cast, the CF, my DH (hehe)--

but remember, as the saying goes, this too shall pass. And in the

end, you (and he!) won't even remember these times. Already the

casting seems a long-ago memory to me, and it's only been a few

weeks!

Sorry this is so long! And I hope it helps!

, mommy of:

Guinevere, on, Ava 8/4/04 right CF DBB 23/7

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** Warning - my reply is quite long **

Firstly congratulations. You got the best presents.

Our second son was born with the same problem as your son. Our son, , was

born 20th April 04. The pediatrician checked on him the night he was born and

the orthopedic surgeon was putting his first cast on at 6.30am when he was less

than 24 hours old. It all happened so quickly, he didn't have a proper bath

until he was one or two weeks old - can't remember. I am not as clue-y on the

whole club foot thing as some of the other parents in this group but will answer

your questions from my perspective. I don't mean to offend anyone, but it seems

the Americans have all the answers for club foot/feet. The Australian websites

have next to nothing on talipes.

1. On a recent visit with our orthopedic surgeon I wanted him to confirm the

method he was using to correct 's foot as I had never heard him mention

Ponsetti. And it is the Ponsetti method. Our ortho's name is not on the list,

but he is at the Children's hospital in Melbourne, Aust. I think if you ask

your ped who they are recommending and what methods they use you will be able to

find a doctor who uses Ponsetti or the french method.

2. We had mainly weekly cast changes every 7 days. When had his achilles

tendon released the plaster stayed on for 2 weeks. The first cast I removed was

very traumatic for ME. I was in tears and my mum was also showing signs of

stress after 4 1/2 hours. I forgot that the ortho said to add vinegar to the

water when soaking the plaster off (I think I was in euphoria after giving

birth). Vinegar is very important. was out of casts by 11 weeks and was

then into his Denis Brown Bar for 23 hours a day for 3 months and is now 12

hours.

3. I would guess it is a little traumatic for the child. But you will need to

remain strong, babies can smell fear!. The only time would take a dummy

was when he was having his plaster put on. I would also imagine that your son

and daughter know no better and can't compare. Your daughter may need to stay

clear of your son as she may get a whack with the plaster or the DBB. Our

is not a very good sleeper, we do not know if it is because his feet are

confined to the DBB or if its just him. Another peice of advice don't buy an

expensive cot. We bought a beautiful wooden cot that now has chunks, scratches

and dents from the DBB.

4. On our last visit with the ortho prior to Christmas the ortho said once

starts walking he will assess his foot and he will probably stop wearing the

DBB. This is good news but after reading all of the posts from this group I am

a little hestitant that it could be premature and may result in a relapse -

which I don't think I would handle too well. But I am not the surgeon.

PS don't forget to enjoy your son while he is a baby. He will grow and develop

like any other baby. Hopefully in a few weeks the club foot will blend into

yours and your wife's life and won't be an issue.

Best wishes

Sharon

carmenna96 nicki.mills@...> wrote:

My wife and I have been taken a little by shock on the news that our

son born on xmas day has talipes in his right foot but not left -

his twin sister is fine. We were visited by a physio in hospital

today and she ran through the Ponsetti treatment plan. I have some

general questions.

1. We live in the UK and our treating physicians are based at the

Birmingham Childrens Hospital. I cannot locate them on the Ponsetti

site as qualified in the method - is the list out of date on that

site?

2. It has been suggested that 7 days we caste is adequate but some

sites refer to 5 days per caste.

3. Is it traumatic for the child - given he will have a sister of

the same age who will not be having treatment.

4. What are the determining factors for the period when the bar

stays in place - variously time periods of 2 - 5 years have been

quoted.

Apologies for these perhapd mundane queries but I have struggled to

search the chat room properly.

Regards

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** Warning - my reply is quite long **

Firstly congratulations. You got the best presents.

Our second son was born with the same problem as your son. Our son, , was

born 20th April 04. The pediatrician checked on him the night he was born and

the orthopedic surgeon was putting his first cast on at 6.30am when he was less

than 24 hours old. It all happened so quickly, he didn't have a proper bath

until he was one or two weeks old - can't remember. I am not as clue-y on the

whole club foot thing as some of the other parents in this group but will answer

your questions from my perspective. I don't mean to offend anyone, but it seems

the Americans have all the answers for club foot/feet. The Australian websites

have next to nothing on talipes.

1. On a recent visit with our orthopedic surgeon I wanted him to confirm the

method he was using to correct 's foot as I had never heard him mention

Ponsetti. And it is the Ponsetti method. Our ortho's name is not on the list,

but he is at the Children's hospital in Melbourne, Aust. I think if you ask

your ped who they are recommending and what methods they use you will be able to

find a doctor who uses Ponsetti or the french method.

2. We had mainly weekly cast changes every 7 days. When had his achilles

tendon released the plaster stayed on for 2 weeks. The first cast I removed was

very traumatic for ME. I was in tears and my mum was also showing signs of

stress after 4 1/2 hours. I forgot that the ortho said to add vinegar to the

water when soaking the plaster off (I think I was in euphoria after giving

birth). Vinegar is very important. was out of casts by 11 weeks and was

then into his Denis Brown Bar for 23 hours a day for 3 months and is now 12

hours.

3. I would guess it is a little traumatic for the child. But you will need to

remain strong, babies can smell fear!. The only time would take a dummy

was when he was having his plaster put on. I would also imagine that your son

and daughter know no better and can't compare. Your daughter may need to stay

clear of your son as she may get a whack with the plaster or the DBB. Our

is not a very good sleeper, we do not know if it is because his feet are

confined to the DBB or if its just him. Another peice of advice don't buy an

expensive cot. We bought a beautiful wooden cot that now has chunks, scratches

and dents from the DBB.

4. On our last visit with the ortho prior to Christmas the ortho said once

starts walking he will assess his foot and he will probably stop wearing the

DBB. This is good news but after reading all of the posts from this group I am

a little hestitant that it could be premature and may result in a relapse -

which I don't think I would handle too well. But I am not the surgeon.

PS don't forget to enjoy your son while he is a baby. He will grow and develop

like any other baby. Hopefully in a few weeks the club foot will blend into

yours and your wife's life and won't be an issue.

Best wishes

Sharon

carmenna96 nicki.mills@...> wrote:

My wife and I have been taken a little by shock on the news that our

son born on xmas day has talipes in his right foot but not left -

his twin sister is fine. We were visited by a physio in hospital

today and she ran through the Ponsetti treatment plan. I have some

general questions.

1. We live in the UK and our treating physicians are based at the

Birmingham Childrens Hospital. I cannot locate them on the Ponsetti

site as qualified in the method - is the list out of date on that

site?

2. It has been suggested that 7 days we caste is adequate but some

sites refer to 5 days per caste.

3. Is it traumatic for the child - given he will have a sister of

the same age who will not be having treatment.

4. What are the determining factors for the period when the bar

stays in place - variously time periods of 2 - 5 years have been

quoted.

Apologies for these perhapd mundane queries but I have struggled to

search the chat room properly.

Regards

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,

Welcome to the group!

I'm fairly new myself, but I'm guessing the reason the shoes bother

her is her feet are not fully corrected. Is your doctor a Ponsetti

qualified doctor? If not, her feet may not be corrected and so the

shoes hurt her when they're on.

My advice would be to send pictures of her feet to Dr. Ponseti

ignacio-ponseti@... or to the clubfoot pics group, you can join

at this link http://health.groups.yahoo.com/group/CFPics/, and see if

they are completely corrected. You might want to find a Ponseti

doctor near you to treat her.

My son went through casting and shoes with a non-Ponseti doctor and

eventually he was referred for major surgery to correct his feet.

Four days before the surgery I found this group and discovered the

surgery could give him painful feet later in life. We switched to a

Ponseti doctor and after 6 casts and a tenotomy is in the shoes

and bar 23/7. The shoes do not bother him at all.

Good luck and keep us posted.

and bilateral clubfoot 11/10/03 dbb 23/7

>

>

> Hey everyone! I just wanted to say that this website is awesome. My

> name is and have a baby girl named Maddox Elaine that was

born

> on Halloween 2004, so she just turned two months old. She was born

> with clubfoot in her right foot and a very slight case in her

left. I

> am from a little town in Texas and there is not anyone who treats it

> there, so I travel to Dallas, Texas at the Texas ish Rite

> Hospital for Children. It is a wonderful hospital and her doctor

and

> nurses are wonderful there. Maddox just got out of her last cast

and

> is now on to the DBB shoes. I was just wondering if anyone has any

> helpful tips on putting these on and avoiding blisters. Please tell

> me it gets better. I feel so bad seeing her cry when I put them

on.

> Anyways I am glad to be a member of this site because I don't really

> know of anyone where I am from that can relate. Any suggestions

would

> be greatly appreciated.

> Thanks,

>

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Congratulations! And on Christmas day as well... :)

I live in the UK as well (in Bath) and have 2-year old

twin boys with one clubfoot between them. Alister was

treated with the Ponseti method here (also not on Dr

Ponseti's list). You could always try and email Naomi

Davies in Manchester to find out if your doctor has

trained with her (ours had), I think she runs regular

seminars.

So far we've had no problems with one twin having to

wear the brace and the other not. Both simply accept

it as it is. If anything then (without the

clubfoot) is slightly jealous and wants to try on

Alister's boots ever so often. Alister on the other

hand is quite protective and doesn't want him to...

:)

I found having twins an advantage regarding the

clubfoot, meaning I had at least one baby I could

cuddle without a cast or bar (both got the same amount

of cuddles of course, I just meant I had another one

for comparison which probably made it less of an issue

since it really isn't that different). And also I

didn't worry about his development all the time since

both developed exactly the same, clubfoot or no

clubfoot. They rolled over, sat up, crawled, stood

up, and walked all within a week of each other.

Hope this helps,

all the best,

with and Alister (*9/02, RCF, Ponseti method)

--- carmenna96 nicki.mills@...> wrote:

>

>

> My wife and I have been taken a little by shock on

> the news that our

> son born on xmas day has talipes in his right foot

> but not left -

> his twin sister is fine. We were visited by a

> physio in hospital

> today and she ran through the Ponsetti treatment

> plan. I have some

> general questions.

>

> 1. We live in the UK and our treating physicians are

> based at the

> Birmingham Childrens Hospital. I cannot locate them

> on the Ponsetti

> site as qualified in the method - is the list out of

> date on that

> site?

>

> 2. It has been suggested that 7 days we caste is

> adequate but some

> sites refer to 5 days per caste.

>

> 3. Is it traumatic for the child - given he will

> have a sister of

> the same age who will not be having treatment.

>

> 4. What are the determining factors for the period

> when the bar

> stays in place - variously time periods of 2 - 5

> years have been

> quoted.

>

> Apologies for these perhapd mundane queries but I

> have struggled to

> search the chat room properly.

>

> Regards

>

>

>

>

>

>

>

__________________________________________________

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Congratulations on the birth of your TWINS!!! I was in the UK over

the holidays and my mother-in-law had kept a news article for me. It

was from the Sept 16th issue of The Sun and it was about a little

girl, Mia McCann and her Mum Ellie. It seems the the parents were

directed to use massaging techniques for the first 2 months then

someone who knew about clubfeet saw her and they started with a form

of the Ponseti Method (the method was not mentioned in the article,

just how they went about treating her). In the article there is

reference to a couple of websites.

www.steps-charity.org.uk or 0

or

www.clubfoot.co.uk

When Mia was started on the Ponseti Method she was seen at Coventry

and Warwickshire hospital. Even if that is not close to you maybe you

could at least speak to someone there for

recommendations in your area. I did notice from the article that her

casts before the tenotomy were only up to her knees. Per the Ponseti

Method they should be to the thigh.

I will try to get my husband to scan the article, so you can all read

it. Mia's shoes and bar look just like my daughter's. Straight last

shoes with red adjustable bar.

Good luck to you and please don't hesitate to ask questions!

Louisa

6-27-99

Zoe 2-22-04 RCF FAB 16/7

>

>

> My wife and I have been taken a little by shock on the news that

our

> son born on xmas day has talipes in his right foot but not left -

> his twin sister is fine. We were visited by a physio in hospital

> today and she ran through the Ponsetti treatment plan. I have some

> general questions.

>

> 1. We live in the UK and our treating physicians are based at the

> Birmingham Childrens Hospital. I cannot locate them on the

Ponsetti

> site as qualified in the method - is the list out of date on that

> site?

>

> 2. It has been suggested that 7 days we caste is adequate but some

> sites refer to 5 days per caste.

>

> 3. Is it traumatic for the child - given he will have a sister of

> the same age who will not be having treatment.

>

> 4. What are the determining factors for the period when the bar

> stays in place - variously time periods of 2 - 5 years have been

> quoted.

>

> Apologies for these perhapd mundane queries but I have struggled to

> search the chat room properly.

>

> Regards

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Further to this, I just read a post on the other clubfoot group

and she mentioned the hospital she goes to in Oxford practices

Ponseti.

Here is the link to her message.

http://health.groups.yahoo.com/group/clubfoot/message/17914

Louisa

> >

> >

> > My wife and I have been taken a little by shock on the news that

> our

> > son born on xmas day has talipes in his right foot but not left -

> > his twin sister is fine. We were visited by a physio in hospital

> > today and she ran through the Ponsetti treatment plan. I have

some

> > general questions.

> >

> > 1. We live in the UK and our treating physicians are based at the

> > Birmingham Childrens Hospital. I cannot locate them on the

> Ponsetti

> > site as qualified in the method - is the list out of date on that

> > site?

> >

> > 2. It has been suggested that 7 days we caste is adequate but

some

> > sites refer to 5 days per caste.

> >

> > 3. Is it traumatic for the child - given he will have a sister of

> > the same age who will not be having treatment.

> >

> > 4. What are the determining factors for the period when the bar

> > stays in place - variously time periods of 2 - 5 years have been

> > quoted.

> >

> > Apologies for these perhapd mundane queries but I have struggled

to

> > search the chat room properly.

> >

> > Regards

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Welcome Caitlin. My name is and I'm 21 yrs old. I've been ill since

the age of 15. I just recently got my definitive mito dx from a gene study. I

see Dr. Cohen at the Cleveland Clinic for my mito disease. Glad to have you

here! This is a great group and everyone is so supportive and knowledgable.

Feel free to ask questions!

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Caitlyn,

Welcome to the group. I am a and am 28. I started having

symptoms when I was in my early teens and was diagnosed at age 18. You

are right about the heat taking a toll on the body. I know you want to

enjoy being outside, just remember to pace yourself. You have found a

great group of people here.

Smiles,

a

On Wed, 29 Jun 2005 14:34:43 -0000 " dolphins8124 " SCMB18Cait@...>

writes:

I am a new member. Just joined this group a couple of days ago and

thought I should introduce myself. My name is Caitlin. I am 22 years

old and from central PA. I have not officially been diagnosed with a

mito disorder but one is suspected.

I have had cyclic vomiting syndrome since I was 4 and was diagnosed

with that when I was 8. There is a Dr in California, Dr. Boles who

believes that cyclic vomiting syndrome (CVS) is mitochondrial related.

He has a study going on and I met the criteria for the first phase of

the study. There are three phases of the study and they are either on

the second or third, I can't remember. I had my COQ10 level checked and

it was below normal thus leading us to suspect even more that I have a

mito disorder.

I have always needed a lot of sleep. Even as a baby I slept a lot. I am

tired pretty much all of the time. Heat makes me even more tired. I try

to stay cool in the summer because I know if I do have mito that

extreme temperatures are pretty bad but it is hard because I love going

out in the summer. I've written a lot so I will go for now.

Caitlin

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Welcome Carmen. I just recently got a definitive Dx of carnitine tranporter

gene defect. I recieve 2.5 grams of IV Carnitine daily thru a central line. I

haven't responded to the therapy and have developed a cardiomyopathy since

being on carnitine supplementation. What dosage of carnitine are you on and

have you noticed any improvement in symptoms? Also who is your primary doc.

that

treats your mitochondrial disease? I have had alot of lower GI probs. but

not involving my esophagus so I've not had the balloon test that you mentioned.

Glad you found this group!

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Hi Caitlin,

Welcome!!! My name is Ann-Marie. I am 45 yrs.old and was diagnosed in 1995.

It took me 10 yrs to get a diagnosis. I have had symptoms all my life. I am

always exhausted. I sleep 18 to 20 hrs. a day and some weeks I sleep for 2

to 3 days straight without going to the potty or drinking any fluids.

When I was younger I was always told I was a lazy girl, even my Mother

thought I was saying I was tired all the time so I didn't have to do any

housework or outside work. I was always the first one to get tired and stop

playing when I was a kid. Any kind of exercise wiped me out.

I understand when you say that the heat is worse on you. The heat does the

same to me. Just the past few weeks it has been so hot and humid here that

just being outside for a few minutes(at times even a few seconds) makes my

whole body, legs weak and wobbly, sweat pouring off of me, lightheaded and

dizzy. Not fun.

Are you seeing a Mito doc? Are you going to an MDA Clinic? Have you had a

fresh muscle biopsy done yet? Any other testing done? I also have below

normal CoQ10 levels, I am carnitine deficient, lactate always high,

pyruvate always below normal, etc, etc...( you get the picture :-) )

Where in Central Pa. do you live? I live in Northeastern Pa. Hope you have

a great day and stay cool. 8-)

Hugs,

Ann-Marie

At 10:34 AM 6/29/2005, you wrote:

>I am a new member. Just joined this group a couple of days ago and

>thought I should introduce myself. My name is Caitlin. I am 22 years

>old and from central PA. I have not officially been diagnosed with a

>mito disorder but one is suspected.

>I have had cyclic vomiting syndrome since I was 4 and was diagnosed

>with that when I was 8. There is a Dr in California, Dr. Boles who

>believes that cyclic vomiting syndrome (CVS) is mitochondrial related.

>He has a study going on and I met the criteria for the first phase of

>the study. There are three phases of the study and they are either on

>the second or third, I can't remember. I had my COQ10 level checked and

>it was below normal thus leading us to suspect even more that I have a

>mito disorder.

>I have always needed a lot of sleep. Even as a baby I slept a lot. I am

>tired pretty much all of the time. Heat makes me even more tired. I try

>to stay cool in the summer because I know if I do have mito that

>extreme temperatures are pretty bad but it is hard because I love going

>out in the summer. I've written a lot so I will go for now.

>Caitlin

>

>

>

>

>

>

>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.

>

>

>

>

>

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Hi a,

Welcome. I have two affected daughters, lies (soon to be 20) and

(15). lies became quite symptomatic with the onset of puberty and was

diagnosed, in Cleveland and Atlanta when she was 13. Retrospectively she did

have soft signs since early childhood but puberty seemed to trigger a major

crisis. has been significantly symptomatic since she was 9 weeks old (a

resusciated SIDS type event), but was originally diagnosed with Congenital

Central Hypoventilation Syndrome. She was then diagnosed with mtiochondrial

disease following li9es diagnosis. also has become far more

symptomatic with the onset of puberty. Both girls tend to have a marked

increase in signs/symptoms prior to each monthly cycle. More organ system

involvement has become apparent over time. Neither, lies or do well

with the summer heat and humidity, They have learned to pace themselves and

sleep for hours to compensate when they hjave overdone the activity. Both

girls now have service dogs that help them maintain some independence. They

also serve to help conserve energy in regards to retrieveing, picking things up,

etc.

My girls are not yet comfortable with list serves, but do correspond directly

with other young adults by email. If you are interested, I'd be happy to share

your email address with them.

a C Koch kckoch76@...> wrote:

Caitlyn,

Welcome to the group. I am a and am 28. I started having

symptoms when I was in my early teens and was diagnosed at age 18. You

are right about the heat taking a toll on the body. I know you want to

enjoy being outside, just remember to pace yourself. You have found a

great group of people here.

Smiles,

a

On Wed, 29 Jun 2005 14:34:43 -0000 " dolphins8124 " SCMB18Cait@...>

writes:

I am a new member. Just joined this group a couple of days ago and

thought I should introduce myself. My name is Caitlin. I am 22 years

old and from central PA. I have not officially been diagnosed with a

mito disorder but one is suspected.

I have had cyclic vomiting syndrome since I was 4 and was diagnosed

with that when I was 8. There is a Dr in California, Dr. Boles who

believes that cyclic vomiting syndrome (CVS) is mitochondrial related.

He has a study going on and I met the criteria for the first phase of

the study. There are three phases of the study and they are either on

the second or third, I can't remember. I had my COQ10 level checked and

it was below normal thus leading us to suspect even more that I have a

mito disorder.

I have always needed a lot of sleep. Even as a baby I slept a lot. I am

tired pretty much all of the time. Heat makes me even more tired. I try

to stay cool in the summer because I know if I do have mito that

extreme temperatures are pretty bad but it is hard because I love going

out in the summer. I've written a lot so I will go for now.

Caitlin

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I don't have problems with my cycle, and actualy have (greatly)

improved symptoms when pregnant. However, I've been on birth control

pills, pregnant, or nursing since I first had mito symptoms (and five

years before that), so I haven't really had the chance to see what

I'm like off of them.

I had HORRIBLE cycles when I was a kid, between 12 and 18 years old -

heavy bleeding and cycles from 20 to 50 days, seemingly random. That

only improved when I went on the pill. If your daughters are having

these type issues, the mere loss of blood could be a factor for their

worsening symptoms. I also had bad cramps during those years as

well, and haven't had any since being on the pill. If there are

communication issues with either of your daughters, it's possible

they're having some pain during menses and that's wearing them down

to cause symptoms. For some reason I know women who put up with the

pain, but I even know people who take off work for a few days each

month from pain and discomfort...

I also had respiratory distress as an infant (was born 2 months

early, I'm in my 30's so it was before they were able to address

those issues correctly), some doctors have wondered if that triggered

or " set me up " for mito disease.

Just some thoughts,

RH

> Caitlyn,

> Welcome to the group. I am a and am 28. I started

having

> symptoms when I was in my early teens and was diagnosed at age 18.

You

> are right about the heat taking a toll on the body. I know you

want to

> enjoy being outside, just remember to pace yourself. You have

found a

> great group of people here.

> Smiles,

> a

>

> On Wed, 29 Jun 2005 14:34:43 -0000 " dolphins8124 "

> writes:

> I am a new member. Just joined this group a couple of days ago and

> thought I should introduce myself. My name is Caitlin. I am 22

years

> old and from central PA. I have not officially been diagnosed with

a

> mito disorder but one is suspected.

> I have had cyclic vomiting syndrome since I was 4 and was diagnosed

> with that when I was 8. There is a Dr in California, Dr. Boles who

> believes that cyclic vomiting syndrome (CVS) is mitochondrial

related.

> He has a study going on and I met the criteria for the first phase

of

> the study. There are three phases of the study and they are either

on

> the second or third, I can't remember. I had my COQ10 level checked

and

> it was below normal thus leading us to suspect even more that I

have a

> mito disorder.

> I have always needed a lot of sleep. Even as a baby I slept a lot.

I am

> tired pretty much all of the time. Heat makes me even more tired. I

try

> to stay cool in the summer because I know if I do have mito that

> extreme temperatures are pretty bad but it is hard because I love

going

> out in the summer. I've written a lot so I will go for now.

> Caitlin

>

>

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