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Hello SAB,

I'm Ed # 2 and also wish to extend to you a welcome to a great group of

individuals who can't be beat. I was dx's with PM in 1993 and was just this

past May dx'd with IBM. If you have any questions or concerns you have come

to the right place. Everybody here is so helpful and supportive that you

will feel like we are all one big family. Stay in touch as this group will

help you through thick and thin no matter what.

Welcome

Ed #2

>

>Reply-To: OurMyositis

>To: OurMyositis

>Subject: Hello

>Date: Wed, 13 Nov 2002 15:22:38 -0000

>

>Hello everyone!

>

>I am new to the group. I was recently diagnosed with dermatomyositis

>in August. I have had symptoms since January but they went

>undiagnosed. I spent over two months in the hospital and only

>recently returned home. My original CPK was over 20,000 and is now

>down in the 500 range but I still have severe pain and weakness. I

>am on methotrexate and prednisone. I am interested in hearing from

>anyone in the group about how they deal with the disease and side

>effects of the meds (especially edema, hair loss, telangiectasias,

>skin fragility, anemia, lack of mobility, pain, etc.)

>

>Thanks,

>SAB

>

_________________________________________________________________

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Hello SAB,

I'm Ed # 2 and also wish to extend to you a welcome to a great group of

individuals who can't be beat. I was dx's with PM in 1993 and was just this

past May dx'd with IBM. If you have any questions or concerns you have come

to the right place. Everybody here is so helpful and supportive that you

will feel like we are all one big family. Stay in touch as this group will

help you through thick and thin no matter what.

Welcome

Ed #2

>

>Reply-To: OurMyositis

>To: OurMyositis

>Subject: Hello

>Date: Wed, 13 Nov 2002 15:22:38 -0000

>

>Hello everyone!

>

>I am new to the group. I was recently diagnosed with dermatomyositis

>in August. I have had symptoms since January but they went

>undiagnosed. I spent over two months in the hospital and only

>recently returned home. My original CPK was over 20,000 and is now

>down in the 500 range but I still have severe pain and weakness. I

>am on methotrexate and prednisone. I am interested in hearing from

>anyone in the group about how they deal with the disease and side

>effects of the meds (especially edema, hair loss, telangiectasias,

>skin fragility, anemia, lack of mobility, pain, etc.)

>

>Thanks,

>SAB

>

_________________________________________________________________

Tired of spam? Get advanced junk mail protection with MSN 8.

http://join.msn.com/?page=features/junkmail

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Guest guest

Hello SAB,

I'm Ed # 2 and also wish to extend to you a welcome to a great group of

individuals who can't be beat. I was dx's with PM in 1993 and was just this

past May dx'd with IBM. If you have any questions or concerns you have come

to the right place. Everybody here is so helpful and supportive that you

will feel like we are all one big family. Stay in touch as this group will

help you through thick and thin no matter what.

Welcome

Ed #2

>

>Reply-To: OurMyositis

>To: OurMyositis

>Subject: Hello

>Date: Wed, 13 Nov 2002 15:22:38 -0000

>

>Hello everyone!

>

>I am new to the group. I was recently diagnosed with dermatomyositis

>in August. I have had symptoms since January but they went

>undiagnosed. I spent over two months in the hospital and only

>recently returned home. My original CPK was over 20,000 and is now

>down in the 500 range but I still have severe pain and weakness. I

>am on methotrexate and prednisone. I am interested in hearing from

>anyone in the group about how they deal with the disease and side

>effects of the meds (especially edema, hair loss, telangiectasias,

>skin fragility, anemia, lack of mobility, pain, etc.)

>

>Thanks,

>SAB

>

_________________________________________________________________

Tired of spam? Get advanced junk mail protection with MSN 8.

http://join.msn.com/?page=features/junkmail

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Hi Ed#2 and thanks for the welcome. Everyone has been very helpful and supportive so far. I really like it here. :)

SAB

Hello>Date: Wed, 13 Nov 2002 15:22:38 -0000>>Hello everyone!>>I am new to the group. I was recently diagnosed with dermatomyositis>in August. I have had symptoms since January but they went>undiagnosed. I spent over two months in the hospital and only>recently returned home. My original CPK was over 20,000 and is now>down in the 500 range but I still have severe pain and weakness. I>am on methotrexate and prednisone. I am interested in hearing from>anyone in the group about how they deal with the disease and side>effects of the meds (especially edema, hair loss, telangiectasias,>skin fragility, anemia, lack of mobility, pain, etc.)>>Thanks,>SAB>_________________________________________________________________Tired of spam? Get advanced junk mail protection with MSN 8. http://join.msn.com/?page=features/junkmail

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Hi Ed#2 and thanks for the welcome. Everyone has been very helpful and supportive so far. I really like it here. :)

SAB

Hello>Date: Wed, 13 Nov 2002 15:22:38 -0000>>Hello everyone!>>I am new to the group. I was recently diagnosed with dermatomyositis>in August. I have had symptoms since January but they went>undiagnosed. I spent over two months in the hospital and only>recently returned home. My original CPK was over 20,000 and is now>down in the 500 range but I still have severe pain and weakness. I>am on methotrexate and prednisone. I am interested in hearing from>anyone in the group about how they deal with the disease and side>effects of the meds (especially edema, hair loss, telangiectasias,>skin fragility, anemia, lack of mobility, pain, etc.)>>Thanks,>SAB>_________________________________________________________________Tired of spam? Get advanced junk mail protection with MSN 8. http://join.msn.com/?page=features/junkmail

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Hi Ed#2 and thanks for the welcome. Everyone has been very helpful and supportive so far. I really like it here. :)

SAB

Hello>Date: Wed, 13 Nov 2002 15:22:38 -0000>>Hello everyone!>>I am new to the group. I was recently diagnosed with dermatomyositis>in August. I have had symptoms since January but they went>undiagnosed. I spent over two months in the hospital and only>recently returned home. My original CPK was over 20,000 and is now>down in the 500 range but I still have severe pain and weakness. I>am on methotrexate and prednisone. I am interested in hearing from>anyone in the group about how they deal with the disease and side>effects of the meds (especially edema, hair loss, telangiectasias,>skin fragility, anemia, lack of mobility, pain, etc.)>>Thanks,>SAB>_________________________________________________________________Tired of spam? Get advanced junk mail protection with MSN 8. http://join.msn.com/?page=features/junkmail

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Welcome to the group, Christy! There are lots of very experienced parents here. Can you tell us more about your son?

Maggie

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Welcome to the group, Christy! There are lots of very experienced parents here. Can you tell us more about your son?

Maggie

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christy

welcome to the group ! Can you give you any more information on yours son's symtpoms and why they think it is mito...and who diagnosed it and how? That would help us help you...feel free to post any and all questions you have...we have all been where you are and know what its like to have all these questions you are not likely to get answered by anyone but the moms who are dealing with this day in and day out...

deb

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Christy,

Welcome. This is a really great place for you to be. Everyone on this

site is so helpful, always there ti help. My name is Kathy, and I have

a granddaughter, Audrey, 16mos with Mito.

What is your son's name?

Kathy, grandma to Audrey, 16mos

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Christy,

Welcome. This is a really great place for you to be. Everyone on this

site is so helpful, always there ti help. My name is Kathy, and I have

a granddaughter, Audrey, 16mos with Mito.

What is your son's name?

Kathy, grandma to Audrey, 16mos

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Christy,

Welcome. This is a really great place for you to be. Everyone on this

site is so helpful, always there ti help. My name is Kathy, and I have

a granddaughter, Audrey, 16mos with Mito.

What is your son's name?

Kathy, grandma to Audrey, 16mos

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Christy,

Welcome to you and your family. You couldn't have picked a better place to

be....you are in good company now. Has your son shown symptoms since birth?

Do you hav a good doctor working with you? Always feel free to share the ups

and downs that will be the roller coaster ride called Mito with us. That is

what we do best here!

Again, welcome.

ruth

mom to Mtich 7 1/2 (mtio affected for the last yr, and now the proud owner of

a snow toboggan), and Lexi 4 1/2 (mito affected since birth, but the queen

Barbie collector nonetheless)

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Christy,

Welcome to you and your family. You couldn't have picked a better place to

be....you are in good company now. Has your son shown symptoms since birth?

Do you hav a good doctor working with you? Always feel free to share the ups

and downs that will be the roller coaster ride called Mito with us. That is

what we do best here!

Again, welcome.

ruth

mom to Mtich 7 1/2 (mtio affected for the last yr, and now the proud owner of

a snow toboggan), and Lexi 4 1/2 (mito affected since birth, but the queen

Barbie collector nonetheless)

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Guest guest

Christy,

Welcome to you and your family. You couldn't have picked a better place to

be....you are in good company now. Has your son shown symptoms since birth?

Do you hav a good doctor working with you? Always feel free to share the ups

and downs that will be the roller coaster ride called Mito with us. That is

what we do best here!

Again, welcome.

ruth

mom to Mtich 7 1/2 (mtio affected for the last yr, and now the proud owner of

a snow toboggan), and Lexi 4 1/2 (mito affected since birth, but the queen

Barbie collector nonetheless)

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Welcome Christy!

You've just jumped on the ride of your life. Feel free to share with us and

let us help you where we can!

Hugs,

Hello

> Hi! My name is Christy. My son has mito. They have not narrowed it

> down to the specific type yet. He is 4 months old now. I am just

> looking for some comfort knowing that there are other parents going

> through this that can help and that I may be able to help. I don't

> really know how to but I am trying to introduce myself.

>

> Thanks

> Christy

>

>

>

>

> Please contact mito-owner with any problems or questions.

>

>

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Welcome Christy!

You've just jumped on the ride of your life. Feel free to share with us and

let us help you where we can!

Hugs,

Hello

> Hi! My name is Christy. My son has mito. They have not narrowed it

> down to the specific type yet. He is 4 months old now. I am just

> looking for some comfort knowing that there are other parents going

> through this that can help and that I may be able to help. I don't

> really know how to but I am trying to introduce myself.

>

> Thanks

> Christy

>

>

>

>

> Please contact mito-owner with any problems or questions.

>

>

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Welcome Christy!

You've just jumped on the ride of your life. Feel free to share with us and

let us help you where we can!

Hugs,

Hello

> Hi! My name is Christy. My son has mito. They have not narrowed it

> down to the specific type yet. He is 4 months old now. I am just

> looking for some comfort knowing that there are other parents going

> through this that can help and that I may be able to help. I don't

> really know how to but I am trying to introduce myself.

>

> Thanks

> Christy

>

>

>

>

> Please contact mito-owner with any problems or questions.

>

>

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hi christy. my son who is now 16 months was found to have mito at age of about 3 months or so. it is very hard to deal with someone telling you something is wrong with your baby. i personally take everthing one day at a time and learn more with every step we take. some days are bad some are better and some are even GREAT. my son also does not have a name for his mito yet. they call it the undiagnosed disorder. how refreshing is that??? LOL. welcome to the club girlfriend, sorry you have a reason to be here but still happy to see you. take care. mom to Duncan (1) undiagnosed mito and Tharyn (4) Hello Hi! My name is Christy. My son has mito. They have not narrowed it down to the specific type yet. He is 4 months old now. I am just looking for some comfort knowing that there are other parents going through this that can help and that I may be able to help. I don't really know how to but I am trying to introduce myself. ThanksChristyPlease contact mito-owner with any problems or questions.

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hi christy. my son who is now 16 months was found to have mito at age of about 3 months or so. it is very hard to deal with someone telling you something is wrong with your baby. i personally take everthing one day at a time and learn more with every step we take. some days are bad some are better and some are even GREAT. my son also does not have a name for his mito yet. they call it the undiagnosed disorder. how refreshing is that??? LOL. welcome to the club girlfriend, sorry you have a reason to be here but still happy to see you. take care. mom to Duncan (1) undiagnosed mito and Tharyn (4) Hello Hi! My name is Christy. My son has mito. They have not narrowed it down to the specific type yet. He is 4 months old now. I am just looking for some comfort knowing that there are other parents going through this that can help and that I may be able to help. I don't really know how to but I am trying to introduce myself. ThanksChristyPlease contact mito-owner with any problems or questions.

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hi christy. my son who is now 16 months was found to have mito at age of about 3 months or so. it is very hard to deal with someone telling you something is wrong with your baby. i personally take everthing one day at a time and learn more with every step we take. some days are bad some are better and some are even GREAT. my son also does not have a name for his mito yet. they call it the undiagnosed disorder. how refreshing is that??? LOL. welcome to the club girlfriend, sorry you have a reason to be here but still happy to see you. take care. mom to Duncan (1) undiagnosed mito and Tharyn (4) Hello Hi! My name is Christy. My son has mito. They have not narrowed it down to the specific type yet. He is 4 months old now. I am just looking for some comfort knowing that there are other parents going through this that can help and that I may be able to help. I don't really know how to but I am trying to introduce myself. ThanksChristyPlease contact mito-owner with any problems or questions.

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Christy,

Hello and welcome to our group. You have found the perfect place to vent, ask questions, and have people that know exactly what you are going through. I am kind of silent in this group, I just jump in when I think I can help, other wise, I am here but mostly very silent. My daughters name is Aspyn, she had Mito, it was unconfirmed what type, she also had Cardiomyopothy, and Lactic Acidosis. If you ever have any questions you can sure e-mail me personally or on the message board. Please tell us more about your son.

Thoughts, and Prayers,

~Wayne and Block~

~Daddy and Mommy of Aspyn Remar~

Unknown Mitochondrial Disease, Cardiomyopothy, And Lactic Acidosis

~November 14, 2001 to July 15, 2002~

Please visit Aspyn at www.aspynblock.com

>From: "cfricks2 "

>Reply-To: Mito >To: Mito >Subject: Hello >Date: Thu, 26 Dec 2002 02:10:46 -0000 >MIME-Version: 1.0 >X-Originating-IP: 67.33.168.9 >Received: from n33.grp.scd.yahoo.com ([66.218.66.101]) by mc8-f14.law1.hotmail.com with Microsoft SMTPSVC(5.0.2195.5600); Thu, 26 Dec 2002 01:30:50 -0800 >Received: from [66.218.67.201] by n33.grp.scd.yahoo.com with NNFMP; 26 Dec 2002 09:30:48 -0000 >Received: (qmail 16627 invoked from network); 26 Dec 2002 09:30:46 -0000 >Received: from unknown (66.218.66.218) by m9.grp.scd.yahoo.com with QMQP; 26 Dec 2002 09:30:46 -0000 >Received: from unknown (HELO n17.grp.scd.yahoo.com) (66.218.66.72) by mta3.grp.scd.yahoo.com with SMTP; 26 Dec 2002 09:30:47 -0000 >Received: from [66.218.66.143] by n17.grp.scd.yahoo.com with NNFMP; 26 Dec 2002 09:30:47 -0000 >Received: (EGP: mail-8_2_3_0); 26 Dec 2002 02:10:49 -0000 >Received: (qmail 70997 invoked from network); 26 Dec 2002 02:10:49 -0000 >Received: from unknown (66.218.66.218) by m9.grp.scd.yahoo.com with QMQP; 26 Dec 2002 02:10:49 -0000 >Received: from unknown (HELO n14.grp.scd.yahoo.com) (66.218.66.69) by mta3.grp.scd.yahoo.com with SMTP; 26 Dec 2002 02:10:50 -0000 >Received: from [66.218.67.164] by n14.grp.scd.yahoo.com with NNFMP; 26 Dec 2002 02:10:49 -0000 >X-eGroups-Return: sentto-104439-25556-1040895046-stacynwayne=hotmail.com@... >X-eGroups-Return: christyfricks@... >X-Sender: christyfricks@... >X-Apparently-To: Mito >Message-ID:

>User-Agent: eGroups-EW/0.82 >X-Mailer: Yahoo Groups Message Poster >X-Yahoo-Profile: cfricks2 >X-eGroups-Approved-By: momalboe via web; 26 Dec 2002 09:30:44 -0000 >Mailing-List: list Mito ; contact Mito-owner >Delivered-To: mailing list Mito >Precedence: bulk >List-Unsubscribe:

>Return-Path: sentto-104439-25556-1040895046-stacynwayne=hotmail.com@... >X-OriginalArrivalTime: 26 Dec 2002 09:30:50.0026 (UTC) FILETIME=[7A4BF8A0:01C2ACC1] > >Hi! My name is Christy. My son has mito. They have not narrowed it >down to the specific type yet. He is 4 months old now. I am just >looking for some comfort knowing that there are other parents going >through this that can help and that I may be able to help. I don't >really know how to but I am trying to introduce myself. > >Thanks >Christy > > The new MSN 8: smart spam protection and 3 months FREE*.

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Christy,

Hello and welcome to our group. You have found the perfect place to vent, ask questions, and have people that know exactly what you are going through. I am kind of silent in this group, I just jump in when I think I can help, other wise, I am here but mostly very silent. My daughters name is Aspyn, she had Mito, it was unconfirmed what type, she also had Cardiomyopothy, and Lactic Acidosis. If you ever have any questions you can sure e-mail me personally or on the message board. Please tell us more about your son.

Thoughts, and Prayers,

~Wayne and Block~

~Daddy and Mommy of Aspyn Remar~

Unknown Mitochondrial Disease, Cardiomyopothy, And Lactic Acidosis

~November 14, 2001 to July 15, 2002~

Please visit Aspyn at www.aspynblock.com

>From: "cfricks2 "

>Reply-To: Mito >To: Mito >Subject: Hello >Date: Thu, 26 Dec 2002 02:10:46 -0000 >MIME-Version: 1.0 >X-Originating-IP: 67.33.168.9 >Received: from n33.grp.scd.yahoo.com ([66.218.66.101]) by mc8-f14.law1.hotmail.com with Microsoft SMTPSVC(5.0.2195.5600); Thu, 26 Dec 2002 01:30:50 -0800 >Received: from [66.218.67.201] by n33.grp.scd.yahoo.com with NNFMP; 26 Dec 2002 09:30:48 -0000 >Received: (qmail 16627 invoked from network); 26 Dec 2002 09:30:46 -0000 >Received: from unknown (66.218.66.218) by m9.grp.scd.yahoo.com with QMQP; 26 Dec 2002 09:30:46 -0000 >Received: from unknown (HELO n17.grp.scd.yahoo.com) (66.218.66.72) by mta3.grp.scd.yahoo.com with SMTP; 26 Dec 2002 09:30:47 -0000 >Received: from [66.218.66.143] by n17.grp.scd.yahoo.com with NNFMP; 26 Dec 2002 09:30:47 -0000 >Received: (EGP: mail-8_2_3_0); 26 Dec 2002 02:10:49 -0000 >Received: (qmail 70997 invoked from network); 26 Dec 2002 02:10:49 -0000 >Received: from unknown (66.218.66.218) by m9.grp.scd.yahoo.com with QMQP; 26 Dec 2002 02:10:49 -0000 >Received: from unknown (HELO n14.grp.scd.yahoo.com) (66.218.66.69) by mta3.grp.scd.yahoo.com with SMTP; 26 Dec 2002 02:10:50 -0000 >Received: from [66.218.67.164] by n14.grp.scd.yahoo.com with NNFMP; 26 Dec 2002 02:10:49 -0000 >X-eGroups-Return: sentto-104439-25556-1040895046-stacynwayne=hotmail.com@... >X-eGroups-Return: christyfricks@... >X-Sender: christyfricks@... >X-Apparently-To: Mito >Message-ID:

>User-Agent: eGroups-EW/0.82 >X-Mailer: Yahoo Groups Message Poster >X-Yahoo-Profile: cfricks2 >X-eGroups-Approved-By: momalboe via web; 26 Dec 2002 09:30:44 -0000 >Mailing-List: list Mito ; contact Mito-owner >Delivered-To: mailing list Mito >Precedence: bulk >List-Unsubscribe:

>Return-Path: sentto-104439-25556-1040895046-stacynwayne=hotmail.com@... >X-OriginalArrivalTime: 26 Dec 2002 09:30:50.0026 (UTC) FILETIME=[7A4BF8A0:01C2ACC1] > >Hi! My name is Christy. My son has mito. They have not narrowed it >down to the specific type yet. He is 4 months old now. I am just >looking for some comfort knowing that there are other parents going >through this that can help and that I may be able to help. I don't >really know how to but I am trying to introduce myself. > >Thanks >Christy > > The new MSN 8: smart spam protection and 3 months FREE*.

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Christy,

Hello and welcome to our group. You have found the perfect place to vent, ask questions, and have people that know exactly what you are going through. I am kind of silent in this group, I just jump in when I think I can help, other wise, I am here but mostly very silent. My daughters name is Aspyn, she had Mito, it was unconfirmed what type, she also had Cardiomyopothy, and Lactic Acidosis. If you ever have any questions you can sure e-mail me personally or on the message board. Please tell us more about your son.

Thoughts, and Prayers,

~Wayne and Block~

~Daddy and Mommy of Aspyn Remar~

Unknown Mitochondrial Disease, Cardiomyopothy, And Lactic Acidosis

~November 14, 2001 to July 15, 2002~

Please visit Aspyn at www.aspynblock.com

>From: "cfricks2 "

>Reply-To: Mito >To: Mito >Subject: Hello >Date: Thu, 26 Dec 2002 02:10:46 -0000 >MIME-Version: 1.0 >X-Originating-IP: 67.33.168.9 >Received: from n33.grp.scd.yahoo.com ([66.218.66.101]) by mc8-f14.law1.hotmail.com with Microsoft SMTPSVC(5.0.2195.5600); Thu, 26 Dec 2002 01:30:50 -0800 >Received: from [66.218.67.201] by n33.grp.scd.yahoo.com with NNFMP; 26 Dec 2002 09:30:48 -0000 >Received: (qmail 16627 invoked from network); 26 Dec 2002 09:30:46 -0000 >Received: from unknown (66.218.66.218) by m9.grp.scd.yahoo.com with QMQP; 26 Dec 2002 09:30:46 -0000 >Received: from unknown (HELO n17.grp.scd.yahoo.com) (66.218.66.72) by mta3.grp.scd.yahoo.com with SMTP; 26 Dec 2002 09:30:47 -0000 >Received: from [66.218.66.143] by n17.grp.scd.yahoo.com with NNFMP; 26 Dec 2002 09:30:47 -0000 >Received: (EGP: mail-8_2_3_0); 26 Dec 2002 02:10:49 -0000 >Received: (qmail 70997 invoked from network); 26 Dec 2002 02:10:49 -0000 >Received: from unknown (66.218.66.218) by m9.grp.scd.yahoo.com with QMQP; 26 Dec 2002 02:10:49 -0000 >Received: from unknown (HELO n14.grp.scd.yahoo.com) (66.218.66.69) by mta3.grp.scd.yahoo.com with SMTP; 26 Dec 2002 02:10:50 -0000 >Received: from [66.218.67.164] by n14.grp.scd.yahoo.com with NNFMP; 26 Dec 2002 02:10:49 -0000 >X-eGroups-Return: sentto-104439-25556-1040895046-stacynwayne=hotmail.com@... >X-eGroups-Return: christyfricks@... >X-Sender: christyfricks@... >X-Apparently-To: Mito >Message-ID:

>User-Agent: eGroups-EW/0.82 >X-Mailer: Yahoo Groups Message Poster >X-Yahoo-Profile: cfricks2 >X-eGroups-Approved-By: momalboe via web; 26 Dec 2002 09:30:44 -0000 >Mailing-List: list Mito ; contact Mito-owner >Delivered-To: mailing list Mito >Precedence: bulk >List-Unsubscribe:

>Return-Path: sentto-104439-25556-1040895046-stacynwayne=hotmail.com@... >X-OriginalArrivalTime: 26 Dec 2002 09:30:50.0026 (UTC) FILETIME=[7A4BF8A0:01C2ACC1] > >Hi! My name is Christy. My son has mito. They have not narrowed it >down to the specific type yet. He is 4 months old now. I am just >looking for some comfort knowing that there are other parents going >through this that can help and that I may be able to help. I don't >really know how to but I am trying to introduce myself. > >Thanks >Christy > > The new MSN 8: smart spam protection and 3 months FREE*.

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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.

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