Hello

[Guest guest]

Hi,

I usually don't post but your story is similar to mine so I wanted to ask you a few questions.

I also have 3 boys and only the 2 youngest are affected.

My 4 year-old is on continuous g-tube feeds. He assist school along with a nurse paid by the school district. She attends to all his needs. (which are too many to list)

My 7 year-old has developed serious neurological setbacks causing for him to be transfered from regular education to special education. The school provides him a school bus which an aide has been assigned to so that she may assist him and once in school a special education aide is with him throught the day to help feed him and care for him in any way.

Where do you live? I'm in South Jersey and will tell you that it has been hell to get all the help I get but I never gave up! I am also very ill with the Adult Onset so I did most of my bargins from home. We are still working with some issues but feel I have made my point and my children are now being cared for better.

My advice to you is not to give up for your sons right to attend school. A website that helped me a lot was

www.wrightslaw.com

I have taught the teachers and school nurses that I will not settle for just OK. Some didn't like me at first but when they saw it wasn't as easy as they thought or that they had seen it all, they started to come around. Now they respect all the work I do and ask for advice. Don't feel intimidated. We (mito families) have been through it all. This disease is real and we will teach the world that our children are just as important and precious as any other child.

If there is anything I can do, let me know.

pattyandcirilo@...

I admire you and wish you the very best.

Patty

mom to Avyel 3 , Abel 7 & Iylon 13 my Mito Hearts

-- hello

H everyone, I am a mom of 3 boys, two with a diagnosed mito disorder.I do not know anyone else with a child affected by this.We have had a long road and it has been getting harder and harder with my 6 yr old. I am hoping to talk with other parents facing similar challenges and maybe get some information as well. I have been in contact with the UMDF, and have recceived a packet from them. I just feel really isolated with it sometimes. My 6 yr old has complex 1 , carnitine deficiency,GERD, is gtube fed, has an undersized stomach and malabsorbtion syndrome,microencephaly, speech delay, hearing and sight defects and epilepsy.My 3 yr old has high lactic acid when nutrtionally compromised, short stature amd muscle fatigue. He is much more mildly affected and my oldest son is not affected at all.I am also facing schoolong issues as they are concerned at being able to handle my 6 yr old's needs. His seizures have become worse in recent months and he is so medicated now that he needs to be wheelchaired.Off medication he is independently mobile. So anyone with ideas and advice would be appreciated. Thanks all!Please contact mito-owner with any problems or questions.

[Guest guest]

Hi,

I usually don't post but your story is similar to mine so I wanted to ask you a few questions.

I also have 3 boys and only the 2 youngest are affected.

My 4 year-old is on continuous g-tube feeds. He assist school along with a nurse paid by the school district. She attends to all his needs. (which are too many to list)

My 7 year-old has developed serious neurological setbacks causing for him to be transfered from regular education to special education. The school provides him a school bus which an aide has been assigned to so that she may assist him and once in school a special education aide is with him throught the day to help feed him and care for him in any way.

Where do you live? I'm in South Jersey and will tell you that it has been hell to get all the help I get but I never gave up! I am also very ill with the Adult Onset so I did most of my bargins from home. We are still working with some issues but feel I have made my point and my children are now being cared for better.

My advice to you is not to give up for your sons right to attend school. A website that helped me a lot was

www.wrightslaw.com

I have taught the teachers and school nurses that I will not settle for just OK. Some didn't like me at first but when they saw it wasn't as easy as they thought or that they had seen it all, they started to come around. Now they respect all the work I do and ask for advice. Don't feel intimidated. We (mito families) have been through it all. This disease is real and we will teach the world that our children are just as important and precious as any other child.

If there is anything I can do, let me know.

pattyandcirilo@...

I admire you and wish you the very best.

Patty

mom to Avyel 3 , Abel 7 & Iylon 13 my Mito Hearts

-- hello

H everyone, I am a mom of 3 boys, two with a diagnosed mito disorder.I do not know anyone else with a child affected by this.We have had a long road and it has been getting harder and harder with my 6 yr old. I am hoping to talk with other parents facing similar challenges and maybe get some information as well. I have been in contact with the UMDF, and have recceived a packet from them. I just feel really isolated with it sometimes. My 6 yr old has complex 1 , carnitine deficiency,GERD, is gtube fed, has an undersized stomach and malabsorbtion syndrome,microencephaly, speech delay, hearing and sight defects and epilepsy.My 3 yr old has high lactic acid when nutrtionally compromised, short stature amd muscle fatigue. He is much more mildly affected and my oldest son is not affected at all.I am also facing schoolong issues as they are concerned at being able to handle my 6 yr old's needs. His seizures have become worse in recent months and he is so medicated now that he needs to be wheelchaired.Off medication he is independently mobile. So anyone with ideas and advice would be appreciated. Thanks all!Please contact mito-owner with any problems or questions.

[Guest guest]

Hi and WElcome,

Of course no one really *wants* to be a part of this group, i have found this

group to be an incredible source of inspriation, hope, strength, and

knowledge. I'm glad you found your way here...you are in good company! Over

the past 5 years i hve found more answers here than anywhere else...my

daughters team of docs are very important to her care but the collective

wisdom to be found here simply cn't be beat. You mentioned how isolating it

can be to have a child with mito...few people even know what it is and it

seems i am constantly telling " the story " . It can certainly be isolating and

overwhleming. If it helps at all, (which i know it probably doesn't) we

have all been there...to quote Kate Eckert BTDTGT (been there done that got

the t=shirt)! <smile>

so welcome, feel free to ask questions, vent, share losses and celebrate

victories.

ruth

mom to Mitch (gonna be 8 in 2 weeks) and Lexi (5 next Monday), both mito

affected

[Guest guest]

Hi and WElcome,

Of course no one really *wants* to be a part of this group, i have found this

group to be an incredible source of inspriation, hope, strength, and

knowledge. I'm glad you found your way here...you are in good company! Over

the past 5 years i hve found more answers here than anywhere else...my

daughters team of docs are very important to her care but the collective

wisdom to be found here simply cn't be beat. You mentioned how isolating it

can be to have a child with mito...few people even know what it is and it

seems i am constantly telling " the story " . It can certainly be isolating and

overwhleming. If it helps at all, (which i know it probably doesn't) we

have all been there...to quote Kate Eckert BTDTGT (been there done that got

the t=shirt)! <smile>

so welcome, feel free to ask questions, vent, share losses and celebrate

victories.

ruth

mom to Mitch (gonna be 8 in 2 weeks) and Lexi (5 next Monday), both mito

affected

[Guest guest]

Hi and WElcome,

Of course no one really *wants* to be a part of this group, i have found this

group to be an incredible source of inspriation, hope, strength, and

knowledge. I'm glad you found your way here...you are in good company! Over

the past 5 years i hve found more answers here than anywhere else...my

daughters team of docs are very important to her care but the collective

wisdom to be found here simply cn't be beat. You mentioned how isolating it

can be to have a child with mito...few people even know what it is and it

seems i am constantly telling " the story " . It can certainly be isolating and

overwhleming. If it helps at all, (which i know it probably doesn't) we

have all been there...to quote Kate Eckert BTDTGT (been there done that got

the t=shirt)! <smile>

so welcome, feel free to ask questions, vent, share losses and celebrate

victories.

ruth

mom to Mitch (gonna be 8 in 2 weeks) and Lexi (5 next Monday), both mito

affected

[Guest guest]

Kandice,

So, 1 month. I'm 2 weeks wired shut. My operation was July 10th. I

knew up front that I was going to be wired for 4 weeks and then banded.

It does drive you crazy and you feel claustrophobic! Right after

surgery I called myself all kinds of names and wonder why I was so

stupid to put myself through something so awful. Well, now 2 weeks

later, I'm still stupid but glad the surgery is over, ha! ( I can't do

anything about the stupid thing) My swelling was pretty much gone at 7

days but I was real active and iced it all the time. My wife is also a

massage therapist and did the Lymphatic massage on my face and head

which felt good and helped too!

Good luck, don't know what the problem with being wired for 4 weeks, I

think most of us are or have been.

Ronnie

kandice200292833 wrote:

> hi...i just received oral surgery and there were complications on my

> lower right jaw, therefore i my teeth are wired shut for a month! i

> dont know how im going to handle it...??? what can i do...i look so

> awful! the swelling is so bad...in how many days do you look better?

>

>

>

[Guest guest]

Kandice,

So, 1 month. I'm 2 weeks wired shut. My operation was July 10th. I

knew up front that I was going to be wired for 4 weeks and then banded.

It does drive you crazy and you feel claustrophobic! Right after

surgery I called myself all kinds of names and wonder why I was so

stupid to put myself through something so awful. Well, now 2 weeks

later, I'm still stupid but glad the surgery is over, ha! ( I can't do

anything about the stupid thing) My swelling was pretty much gone at 7

days but I was real active and iced it all the time. My wife is also a

massage therapist and did the Lymphatic massage on my face and head

which felt good and helped too!

Good luck, don't know what the problem with being wired for 4 weeks, I

think most of us are or have been.

Ronnie

kandice200292833 wrote:

> hi...i just received oral surgery and there were complications on my

> lower right jaw, therefore i my teeth are wired shut for a month! i

> dont know how im going to handle it...??? what can i do...i look so

> awful! the swelling is so bad...in how many days do you look better?

>

>

>

[Guest guest]

Kandice,

So, 1 month. I'm 2 weeks wired shut. My operation was July 10th. I

knew up front that I was going to be wired for 4 weeks and then banded.

It does drive you crazy and you feel claustrophobic! Right after

surgery I called myself all kinds of names and wonder why I was so

stupid to put myself through something so awful. Well, now 2 weeks

later, I'm still stupid but glad the surgery is over, ha! ( I can't do

anything about the stupid thing) My swelling was pretty much gone at 7

days but I was real active and iced it all the time. My wife is also a

massage therapist and did the Lymphatic massage on my face and head

which felt good and helped too!

Good luck, don't know what the problem with being wired for 4 weeks, I

think most of us are or have been.

Ronnie

kandice200292833 wrote:

> hi...i just received oral surgery and there were complications on my

> lower right jaw, therefore i my teeth are wired shut for a month! i

> dont know how im going to handle it...??? what can i do...i look so

> awful! the swelling is so bad...in how many days do you look better?

>

>

>

[Guest guest]

Honey, I don't mean to be callow -- you're going through something

that's hard to do, and I do sympathize -- but even if you hadn't hit

a snag and had to be wired, you would probably be unhappy with the

way you look at this point.

The swelling just goes along with the trip. I didn't have much

swelling -- I only had work on my lower jaw -- but I was sooo

bruised. I had two giant purple parentheses on my face, one on either

side of my mouth.

How long it will take to go away is a highly individual thing. Some

folks begin to see it diminish in a week or two, others have it a

matter of months. It can take a year or more for it to vanish

completely. Don't forget, the good doc really rearranged your face

and bones, so it will take them time to get where they're gonna be

eventually.

For eating, I'd think you'd at least want to try out the zippie bags

(Zip N Squeeze). Many people have found them invaluable. A few have

not. I personally thought the jaw wraps were treasures -- and I'm

still bugging a friend I loaned some to for her wisdom teeth

extraction to bring 'em back. I guess she liked 'em, too!

Take care, and try to be patient. I know it's hard, but try. You'll

get there.

Best,

Cammie

> hi...i just received oral surgery and there were complications on

my

> lower right jaw, therefore i my teeth are wired shut for a month! i

> dont know how im going to handle it...??? what can i do...i look so

> awful! the swelling is so bad...in how many days do you look better?

[Guest guest]

Honey, I don't mean to be callow -- you're going through something

that's hard to do, and I do sympathize -- but even if you hadn't hit

a snag and had to be wired, you would probably be unhappy with the

way you look at this point.

The swelling just goes along with the trip. I didn't have much

swelling -- I only had work on my lower jaw -- but I was sooo

bruised. I had two giant purple parentheses on my face, one on either

side of my mouth.

How long it will take to go away is a highly individual thing. Some

folks begin to see it diminish in a week or two, others have it a

matter of months. It can take a year or more for it to vanish

completely. Don't forget, the good doc really rearranged your face

and bones, so it will take them time to get where they're gonna be

eventually.

For eating, I'd think you'd at least want to try out the zippie bags

(Zip N Squeeze). Many people have found them invaluable. A few have

not. I personally thought the jaw wraps were treasures -- and I'm

still bugging a friend I loaned some to for her wisdom teeth

extraction to bring 'em back. I guess she liked 'em, too!

Take care, and try to be patient. I know it's hard, but try. You'll

get there.

Best,

Cammie

> hi...i just received oral surgery and there were complications on

my

> lower right jaw, therefore i my teeth are wired shut for a month! i

> dont know how im going to handle it...??? what can i do...i look so

> awful! the swelling is so bad...in how many days do you look better?

[Guest guest]

I know it's hard. I, too, didn't think I could handle it. I'm not

wired but splinted and banded tight and it seems about the same

though i'm told wired is worse. it's a real tough time for you right

now--with the swelling and getting used to being wired. plus, your

body is tired and the process of taking the liquid food is labor

intensive. i lost it a couple of times.

one of the posts to me told me to hang in--that about 3 weeks, they

started feeling more human. i found that to be true. i'm 18 days

post-op now and i can do a lot more before getting tired. even more

important is that i feel like doing more--i have the desire to get

out. i finally feel less clouded--before i felt my mind was in a fog.

my doctor told me before the surgery that i'd only have to wear the

splint for 3 weeks. now he says 6 weeks. (that was another day i

freaked). but as the rest of your body gets stronger, everything

else seems more manageable, too.

i tended to take the pain med. fairly regularly at first because then

i could sleep and though i might not have classic " pain " i was very

uncomfortable from the sinus pressure, etc. and it helped with all

that.

so, as in everything, time heals all wounds. hang in there--i

wouldn't have believed it myself the first week out, but it does get

better.

Jackie

> hi...i just received oral surgery and there were complications on

my

> lower right jaw, therefore i my teeth are wired shut for a month! i

> dont know how im going to handle it...??? what can i do...i look so

> awful! the swelling is so bad...in how many days do you look better?

[Guest guest]

I know it's hard. I, too, didn't think I could handle it. I'm not

wired but splinted and banded tight and it seems about the same

though i'm told wired is worse. it's a real tough time for you right

now--with the swelling and getting used to being wired. plus, your

body is tired and the process of taking the liquid food is labor

intensive. i lost it a couple of times.

one of the posts to me told me to hang in--that about 3 weeks, they

started feeling more human. i found that to be true. i'm 18 days

post-op now and i can do a lot more before getting tired. even more

important is that i feel like doing more--i have the desire to get

out. i finally feel less clouded--before i felt my mind was in a fog.

my doctor told me before the surgery that i'd only have to wear the

splint for 3 weeks. now he says 6 weeks. (that was another day i

freaked). but as the rest of your body gets stronger, everything

else seems more manageable, too.

i tended to take the pain med. fairly regularly at first because then

i could sleep and though i might not have classic " pain " i was very

uncomfortable from the sinus pressure, etc. and it helped with all

that.

so, as in everything, time heals all wounds. hang in there--i

wouldn't have believed it myself the first week out, but it does get

better.

Jackie

> hi...i just received oral surgery and there were complications on

my

> lower right jaw, therefore i my teeth are wired shut for a month! i

> dont know how im going to handle it...??? what can i do...i look so

> awful! the swelling is so bad...in how many days do you look better?

[Guest guest]

I know it's hard. I, too, didn't think I could handle it. I'm not

wired but splinted and banded tight and it seems about the same

though i'm told wired is worse. it's a real tough time for you right

now--with the swelling and getting used to being wired. plus, your

body is tired and the process of taking the liquid food is labor

intensive. i lost it a couple of times.

one of the posts to me told me to hang in--that about 3 weeks, they

started feeling more human. i found that to be true. i'm 18 days

post-op now and i can do a lot more before getting tired. even more

important is that i feel like doing more--i have the desire to get

out. i finally feel less clouded--before i felt my mind was in a fog.

my doctor told me before the surgery that i'd only have to wear the

splint for 3 weeks. now he says 6 weeks. (that was another day i

freaked). but as the rest of your body gets stronger, everything

else seems more manageable, too.

i tended to take the pain med. fairly regularly at first because then

i could sleep and though i might not have classic " pain " i was very

uncomfortable from the sinus pressure, etc. and it helped with all

that.

so, as in everything, time heals all wounds. hang in there--i

wouldn't have believed it myself the first week out, but it does get

better.

Jackie

> hi...i just received oral surgery and there were complications on

my

> lower right jaw, therefore i my teeth are wired shut for a month! i

> dont know how im going to handle it...??? what can i do...i look so

> awful! the swelling is so bad...in how many days do you look better?

[Guest guest]

Welcome Marshall and good luck to you... D

[Guest guest]

Welcome Marshall and good luck to you... D

[Guest guest]

Welcome Marshall and good luck to you... D

[Guest guest]

Hi Marshall!!! Welcome to the group!!! (my maiden name was Lynch!!!)..Where

are you from? I am post-op by 8 months, and down 156.3 lbs.....sherri

Stay strong and healthy

>

>Reply-To: Gastric_Bypass_Family

>To: Gastric_Bypass_Family

>Subject: Hello

>Date: Sun, 16 May 2004 22:08:47 -0000

>

>Hi..I'm Marshall and I'm getting started for my new life..I've

>completed most of the hoops that you have to jump through(I only

>lack the nutrionist and the physc eval) and will soon get a op

>date.I'm praying that the ins. will be kind to me and approve right

>away but i'm keeping a few reservations on that.. I just wanted to

>introduce myself and say thanks for all the courage and support I

>see in this group. God Bless you all..

>

>Marshall

>

>

>

>

>

>

>

[Guest guest]

Hi Marshall!!! Welcome to the group!!! (my maiden name was Lynch!!!)..Where

are you from? I am post-op by 8 months, and down 156.3 lbs.....sherri

Stay strong and healthy

>

>Reply-To: Gastric_Bypass_Family

>To: Gastric_Bypass_Family

>Subject: Hello

>Date: Sun, 16 May 2004 22:08:47 -0000

>

>Hi..I'm Marshall and I'm getting started for my new life..I've

>completed most of the hoops that you have to jump through(I only

>lack the nutrionist and the physc eval) and will soon get a op

>date.I'm praying that the ins. will be kind to me and approve right

>away but i'm keeping a few reservations on that.. I just wanted to

>introduce myself and say thanks for all the courage and support I

>see in this group. God Bless you all..

>

>Marshall

>

>

>

>

>

>

>

[Guest guest]

Hi Sherri,

I'm from N.W.Arkansas. Springdale area. My whole family is from here

back till the old ones came from Ireland. LOL. Wow you've really

dropped the weight..I just can't wait to get started..pantpant..

marshall

> Hi Marshall!!! Welcome to the group!!! (my maiden name was

Lynch!!!)..Where

> are you from? I am post-op by 8 months, and down 156.3

lbs.....sherri

>

>

>

> Stay strong and healthy

>

>

>

>

>

> >From: " Marshall Lynch " <hyperdrv5@h...>

> >Reply-To: Gastric_Bypass_Family

> >To: Gastric_Bypass_Family

> >Subject: Hello

> >Date: Sun, 16 May 2004 22:08:47 -0000

> >

> >Hi..I'm Marshall and I'm getting started for my new life..I've

> >completed most of the hoops that you have to jump through(I only

> >lack the nutrionist and the physc eval) and will soon get a op

> >date.I'm praying that the ins. will be kind to me and approve

right

> >away but i'm keeping a few reservations on that.. I just wanted to

> >introduce myself and say thanks for all the courage and support I

> >see in this group. God Bless you all..

> >

> >Marshall

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Hi Sherri,

I'm from N.W.Arkansas. Springdale area. My whole family is from here

back till the old ones came from Ireland. LOL. Wow you've really

dropped the weight..I just can't wait to get started..pantpant..

marshall

> Hi Marshall!!! Welcome to the group!!! (my maiden name was

Lynch!!!)..Where

> are you from? I am post-op by 8 months, and down 156.3

lbs.....sherri

>

>

>

> Stay strong and healthy

>

>

>

>

>

> >From: " Marshall Lynch " <hyperdrv5@h...>

> >Reply-To: Gastric_Bypass_Family

> >To: Gastric_Bypass_Family

> >Subject: Hello

> >Date: Sun, 16 May 2004 22:08:47 -0000

> >

> >Hi..I'm Marshall and I'm getting started for my new life..I've

> >completed most of the hoops that you have to jump through(I only

> >lack the nutrionist and the physc eval) and will soon get a op

> >date.I'm praying that the ins. will be kind to me and approve

right

> >away but i'm keeping a few reservations on that.. I just wanted to

> >introduce myself and say thanks for all the courage and support I

> >see in this group. God Bless you all..

> >

> >Marshall

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Celeste,

Welcome to the group, you will find a great group of caring and encouraging

people here, I know I sure have. Please don't ever be afraid to ask a

question. Someone here is bound to have experienced your question and may have

some

good advice.

Take care and have a wonderful day.

Laurette

4/23/04 open RNY

309/290/255/150

St. Charity Hospital

Cleveland, Ohio

[Guest guest]

...you have crohn's, right? Have you noticed any blood or anything?

Kathy

Hello

Hi,I am back in town until Monday, where I head for Jerusalem.I have to admit I am rather nervous travelling there, so please pray for me.Does anyone have any reason why my intestines are burning??? I mean a realburning pain.I can always be reached by e-mail, ICQ and MSNLove u all,Please visit our website at:http://ACES_Autoimmune.tripod.com

[Guest guest]

...you have crohn's, right? Have you noticed any blood or anything?

Kathy

Hello

Hi,I am back in town until Monday, where I head for Jerusalem.I have to admit I am rather nervous travelling there, so please pray for me.Does anyone have any reason why my intestines are burning??? I mean a realburning pain.I can always be reached by e-mail, ICQ and MSNLove u all,Please visit our website at:http://ACES_Autoimmune.tripod.com

[Guest guest]

Kathy - I do have crohns. No blood for change but then again no bowel movements

-----Original Message-----From: Kathy Sent: Saturday, September 18, 2004 8:15 PMTo: autoimmune-ills Subject: Re: Hello

...you have crohn's, right? Have you noticed any blood or anything?

Kathy

Hello

Hi,I am back in town until Monday, where I head for Jerusalem.I have to admit I am rather nervous travelling there, so please pray for me.Does anyone have any reason why my intestines are burning??? I mean a realburning pain.I can always be reached by e-mail, ICQ and MSNLove u all,Please visit our website at:http://ACES_Autoimmune.tripod.com Please visit our website at:http://ACES_Autoimmune.tripod.com

[Guest guest]

Kathy - I do have crohns. No blood for change but then again no bowel movements

-----Original Message-----From: Kathy Sent: Saturday, September 18, 2004 8:15 PMTo: autoimmune-ills Subject: Re: Hello

...you have crohn's, right? Have you noticed any blood or anything?

Kathy

Hello

Hi,I am back in town until Monday, where I head for Jerusalem.I have to admit I am rather nervous travelling there, so please pray for me.Does anyone have any reason why my intestines are burning??? I mean a realburning pain.I can always be reached by e-mail, ICQ and MSNLove u all,Please visit our website at:http://ACES_Autoimmune.tripod.com Please visit our website at:http://ACES_Autoimmune.tripod.com