new

December 3, 2001

Angel - it was good to see you (figuratively speaking) at the chat room

Friday night - hopefully some of it was useful - or at least took your mind

off your problems for a while - sometimes that is the best medicine of all.

TTFN, (BCRoth at the chatroom)

New

> >

> > > Hello All,

> > >

> > > I Angel 21/f from Michigan. I joined the group the other day and

> > > tried to post but Yahoo ate it. I have not been diagnosed with CP

> > > but there is something wrong with my pancreas and I haven't got a

> > > satisfactory reason why it is causing so much trouble and why my

> > > physicians want to treat my illness the way they do.

> > >

> > > I am in constant pain. It has affected college, work and my

> social

> > > life. I have missed two semesters of school and I hope to go back

> > > next semester but that is defintely up in the air.

> > >

> > > More about me later . . . I could write a book, as I'm sure many

> of

> > > you could. I would like to know more about the group. Are there

> any

> > > posting guidelines?

> > >

> > > Hope to be hearing from others soon.

> > >

> > > Regaurds,

> > >

> > > Angel

> > >

> > > PANCREATITIS Association, Intl.

> > > Online e-mail group

> > >

> > > To reply to this message hit " reply " or send an e-mail to:

> > Pancreatitis@Y...

> > >

> > > To subscribe to this e-mail group, simply send an e-mail to:

> > Pancreatitis-subscribe@Y...

> > >

December 3, 2001

Angel - it was good to see you (figuratively speaking) at the chat room

Friday night - hopefully some of it was useful - or at least took your mind

off your problems for a while - sometimes that is the best medicine of all.

TTFN, (BCRoth at the chatroom)

New

> >

> > > Hello All,

> > >

> > > I Angel 21/f from Michigan. I joined the group the other day and

> > > tried to post but Yahoo ate it. I have not been diagnosed with CP

> > > but there is something wrong with my pancreas and I haven't got a

> > > satisfactory reason why it is causing so much trouble and why my

> > > physicians want to treat my illness the way they do.

> > >

> > > I am in constant pain. It has affected college, work and my

> social

> > > life. I have missed two semesters of school and I hope to go back

> > > next semester but that is defintely up in the air.

> > >

> > > More about me later . . . I could write a book, as I'm sure many

> of

> > > you could. I would like to know more about the group. Are there

> any

> > > posting guidelines?

> > >

> > > Hope to be hearing from others soon.

> > >

> > > Regaurds,

> > >

> > > Angel

> > >

> > > PANCREATITIS Association, Intl.

> > > Online e-mail group

> > >

> > > To reply to this message hit " reply " or send an e-mail to:

> > Pancreatitis@Y...

> > >

> > > To subscribe to this e-mail group, simply send an e-mail to:

> > Pancreatitis-subscribe@Y...

> > >

December 31, 2002

Wow, have i walked a miles in these shoes! The emotional roller coaster sure

can make you crazy. Sounds like you are in good hands with the doctors

there, but it's still never easy to have a kid in the hospital fighting for

their life. I will hold your family in my thoughts and prayers if you don't

mind...a little extra intervetnion of sorts. <smile>

Make sure to take a few minutes each day for yourself, even though you feel

selfish doing so...it really is necessary!

Hope to see your son home soon.

ruth

December 31, 2002

I understand how scary this all can be. My daughter had a stroke this past April and has had many stroke-like episodes as well. She has seizures, is a bi-hemi, and struiggles with low muscle tone and lots of sickness. We are in the beginning phase of determining which type of Mito she has and have also just begun Carnitine and polycitra for a high metabolic acidosis issue. We are here for you whenever you want to vent. I hope your child will recover and be out of the hospital soon. Darla: mom to Asenath Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com

December 31, 2002

Hi Christy. My son had his seizures and brohnchiolitis and rsv and all that all good stuff staring at about 2 months old. He now sees a neuro, pediatrician, and most importantly a genetic specialist from Mayo clinic. Duncan was immediately put on phenobarb too but I was VERY happy to get him off of it cuz he was a zombie and it is addicting. they also put him on Dilantan at the same time. so he was extra sleepy and zombie like. Don't really know which was worse. If you need to talk I am on almost every night after 9 pm central time. Sounds like our kids have a lot in common. Sorry to here Josh is ill, been there. It never gets easy. You two are in my thoughts. 29 mom to Duncan 1 (un-named mito) and Tharyn 3 1/2 New Hello again. It has taken me awhile to get back to my computer. My son is 4 months old. His name is Josh. He was admitted to the hospital at 4 days old because he stopped breathing. They out the vent in and he wasn't breathing on his own. They ran loads of tests. During these tests they found that he was having seizures. They found lactic acidosis, high pyruvate, and ammonia. My other son is 4 years old and had a stroke at birth. They decided to do a muscle biopsy because he had so many different things going on that were not really related in any way. They immediately put him on Pheno for seizures and did the muscle biopsy when he was 1 week and 4 days old. Dr. Schoffner did his biopsy, they warned me that they might not be able to get enough tissue to have a conclusive result. They did not. They did find that he had mito but was unable to specify a type. He has had several ear infections, asthma, and chronic bronchialitis. His muscle tone is somewhat weak, however, he started Carnitine 2 weeks ago and now (thank goodness) his lactate, pyruvate, and ammonia are normal. He is now in the hospital with RSV and acute asthma. One day he is doing fine, the next he is back on oxygen. His heart and breathing rate is going through the roof. He is very tired. I am really scared. But, as with any child we have good days, bad days, and GREAT DAYS. These are just a few bad ones. I am so glad to have found this group. There are not many people to talk to about mito. There aren't even that many doctors that know anything about it. I am wondering right now, what other doctor my child needs to be seeing, other than his ped. neurologist and his pediatrician. Well, I am going back to the hospital now, hopefully I will be back in a few days.CfricksPlease contact mito-owner with any problems or questions.

December 31, 2002

Hi Christy. My son had his seizures and brohnchiolitis and rsv and all that all good stuff staring at about 2 months old. He now sees a neuro, pediatrician, and most importantly a genetic specialist from Mayo clinic. Duncan was immediately put on phenobarb too but I was VERY happy to get him off of it cuz he was a zombie and it is addicting. they also put him on Dilantan at the same time. so he was extra sleepy and zombie like. Don't really know which was worse. If you need to talk I am on almost every night after 9 pm central time. Sounds like our kids have a lot in common. Sorry to here Josh is ill, been there. It never gets easy. You two are in my thoughts. 29 mom to Duncan 1 (un-named mito) and Tharyn 3 1/2 New Hello again. It has taken me awhile to get back to my computer. My son is 4 months old. His name is Josh. He was admitted to the hospital at 4 days old because he stopped breathing. They out the vent in and he wasn't breathing on his own. They ran loads of tests. During these tests they found that he was having seizures. They found lactic acidosis, high pyruvate, and ammonia. My other son is 4 years old and had a stroke at birth. They decided to do a muscle biopsy because he had so many different things going on that were not really related in any way. They immediately put him on Pheno for seizures and did the muscle biopsy when he was 1 week and 4 days old. Dr. Schoffner did his biopsy, they warned me that they might not be able to get enough tissue to have a conclusive result. They did not. They did find that he had mito but was unable to specify a type. He has had several ear infections, asthma, and chronic bronchialitis. His muscle tone is somewhat weak, however, he started Carnitine 2 weeks ago and now (thank goodness) his lactate, pyruvate, and ammonia are normal. He is now in the hospital with RSV and acute asthma. One day he is doing fine, the next he is back on oxygen. His heart and breathing rate is going through the roof. He is very tired. I am really scared. But, as with any child we have good days, bad days, and GREAT DAYS. These are just a few bad ones. I am so glad to have found this group. There are not many people to talk to about mito. There aren't even that many doctors that know anything about it. I am wondering right now, what other doctor my child needs to be seeing, other than his ped. neurologist and his pediatrician. Well, I am going back to the hospital now, hopefully I will be back in a few days.CfricksPlease contact mito-owner with any problems or questions.

December 31, 2002

Hi Christy. My son had his seizures and brohnchiolitis and rsv and all that all good stuff staring at about 2 months old. He now sees a neuro, pediatrician, and most importantly a genetic specialist from Mayo clinic. Duncan was immediately put on phenobarb too but I was VERY happy to get him off of it cuz he was a zombie and it is addicting. they also put him on Dilantan at the same time. so he was extra sleepy and zombie like. Don't really know which was worse. If you need to talk I am on almost every night after 9 pm central time. Sounds like our kids have a lot in common. Sorry to here Josh is ill, been there. It never gets easy. You two are in my thoughts. 29 mom to Duncan 1 (un-named mito) and Tharyn 3 1/2 New Hello again. It has taken me awhile to get back to my computer. My son is 4 months old. His name is Josh. He was admitted to the hospital at 4 days old because he stopped breathing. They out the vent in and he wasn't breathing on his own. They ran loads of tests. During these tests they found that he was having seizures. They found lactic acidosis, high pyruvate, and ammonia. My other son is 4 years old and had a stroke at birth. They decided to do a muscle biopsy because he had so many different things going on that were not really related in any way. They immediately put him on Pheno for seizures and did the muscle biopsy when he was 1 week and 4 days old. Dr. Schoffner did his biopsy, they warned me that they might not be able to get enough tissue to have a conclusive result. They did not. They did find that he had mito but was unable to specify a type. He has had several ear infections, asthma, and chronic bronchialitis. His muscle tone is somewhat weak, however, he started Carnitine 2 weeks ago and now (thank goodness) his lactate, pyruvate, and ammonia are normal. He is now in the hospital with RSV and acute asthma. One day he is doing fine, the next he is back on oxygen. His heart and breathing rate is going through the roof. He is very tired. I am really scared. But, as with any child we have good days, bad days, and GREAT DAYS. These are just a few bad ones. I am so glad to have found this group. There are not many people to talk to about mito. There aren't even that many doctors that know anything about it. I am wondering right now, what other doctor my child needs to be seeing, other than his ped. neurologist and his pediatrician. Well, I am going back to the hospital now, hopefully I will be back in a few days.CfricksPlease contact mito-owner with any problems or questions.

January 1, 2003

Darla,

What is polycitra??

Regards,

& Savage.

Re: New

I understand how scary this all can be. My daughter had a stroke this past April and has had many stroke-like episodes as well. She has seizures, is a bi-hemi, and struiggles with low muscle tone and lots of sickness. We are in the beginning phase of determining which type of Mito she has and have also just begun Carnitine and polycitra for a high metabolic acidosis issue. We are here for you whenever you want to vent. I hope your child will recover and be out of the hospital soon.

Darla: mom to Asenath

Please contact mito-owner with any problems or questions.

January 1, 2003

Darla,

What is polycitra??

Regards,

& Savage.

Re: New

I understand how scary this all can be. My daughter had a stroke this past April and has had many stroke-like episodes as well. She has seizures, is a bi-hemi, and struiggles with low muscle tone and lots of sickness. We are in the beginning phase of determining which type of Mito she has and have also just begun Carnitine and polycitra for a high metabolic acidosis issue. We are here for you whenever you want to vent. I hope your child will recover and be out of the hospital soon.

Darla: mom to Asenath

Please contact mito-owner with any problems or questions.

January 1, 2003

Darla,

What is polycitra??

Regards,

& Savage.

Re: New

I understand how scary this all can be. My daughter had a stroke this past April and has had many stroke-like episodes as well. She has seizures, is a bi-hemi, and struiggles with low muscle tone and lots of sickness. We are in the beginning phase of determining which type of Mito she has and have also just begun Carnitine and polycitra for a high metabolic acidosis issue. We are here for you whenever you want to vent. I hope your child will recover and be out of the hospital soon.

Darla: mom to Asenath

Please contact mito-owner with any problems or questions.

January 2, 2003

Christy,

I am glad you are here. I hope that your son does better. I am too exhausted physically and emotionally to write more, but I know you will find strength from this group.

Riley

-----Original Message----- Sent: Sunday, December 29, 2002 8:58 AMTo: Mito Subject: NewHello again. It has taken me awhile to get back to my computer. My son is 4 months old. His name is Josh. He was admitted to the hospital at 4 days old because he stopped breathing. They out the vent in and he wasn't breathing on his own. They ran loads of tests. During these tests they found that he was having seizures. They found lactic acidosis, high pyruvate, and ammonia. My ohter son is 4 years old and had a stroke at birth. They decided to do a muscle biopsy because he had so many different things going on that were not really related in any way. They immediately put him on Pheno for seizures and did the muscle biopsy when he was 1 week and 4 days old. Dr. Schoffner did his biopsy, they warned me that they might not be able to get enough tissue to have a conclusive result. They did not. They did find that he had mito but was unable to specify a type. He has had several ear infections, asthma, and chronic bronchialitis. His muscle tone is somewhat weak, however, he started Carnitine 2 weeks ago and now (thank goodness) his lactate, pyruvate, and ammonia are normal. He is now in the hospital with RSV and acute asthma. One day he is doing fine, the next he is back on oxygen. His heart and breathing rate is going through the roof. He is very tired. I am really scared. But, as with any child we have good days, bad days, and GREAT DAYS. These are just a few bad ones. I am so glad to have found this group. There are not many people to talk to about mito. There aren't even that many doctors that know anything about it. I am wondering right now, what other doctor my child needs to be seeing, other than his ped. neurologist and his pediatrician. Well, I am going back to the hospital now, hopefully I will be back in a few days.CfricksPlease contact mito-owner with any problems or questions.

January 2, 2003

Christy,

I am glad you are here. I hope that your son does better. I am too exhausted physically and emotionally to write more, but I know you will find strength from this group.

Riley

-----Original Message----- Sent: Sunday, December 29, 2002 8:58 AMTo: Mito Subject: NewHello again. It has taken me awhile to get back to my computer. My son is 4 months old. His name is Josh. He was admitted to the hospital at 4 days old because he stopped breathing. They out the vent in and he wasn't breathing on his own. They ran loads of tests. During these tests they found that he was having seizures. They found lactic acidosis, high pyruvate, and ammonia. My ohter son is 4 years old and had a stroke at birth. They decided to do a muscle biopsy because he had so many different things going on that were not really related in any way. They immediately put him on Pheno for seizures and did the muscle biopsy when he was 1 week and 4 days old. Dr. Schoffner did his biopsy, they warned me that they might not be able to get enough tissue to have a conclusive result. They did not. They did find that he had mito but was unable to specify a type. He has had several ear infections, asthma, and chronic bronchialitis. His muscle tone is somewhat weak, however, he started Carnitine 2 weeks ago and now (thank goodness) his lactate, pyruvate, and ammonia are normal. He is now in the hospital with RSV and acute asthma. One day he is doing fine, the next he is back on oxygen. His heart and breathing rate is going through the roof. He is very tired. I am really scared. But, as with any child we have good days, bad days, and GREAT DAYS. These are just a few bad ones. I am so glad to have found this group. There are not many people to talk to about mito. There aren't even that many doctors that know anything about it. I am wondering right now, what other doctor my child needs to be seeing, other than his ped. neurologist and his pediatrician. Well, I am going back to the hospital now, hopefully I will be back in a few days.CfricksPlease contact mito-owner with any problems or questions.

January 2, 2003

Christy,

I am glad you are here. I hope that your son does better. I am too exhausted physically and emotionally to write more, but I know you will find strength from this group.

Riley

-----Original Message----- Sent: Sunday, December 29, 2002 8:58 AMTo: Mito Subject: NewHello again. It has taken me awhile to get back to my computer. My son is 4 months old. His name is Josh. He was admitted to the hospital at 4 days old because he stopped breathing. They out the vent in and he wasn't breathing on his own. They ran loads of tests. During these tests they found that he was having seizures. They found lactic acidosis, high pyruvate, and ammonia. My ohter son is 4 years old and had a stroke at birth. They decided to do a muscle biopsy because he had so many different things going on that were not really related in any way. They immediately put him on Pheno for seizures and did the muscle biopsy when he was 1 week and 4 days old. Dr. Schoffner did his biopsy, they warned me that they might not be able to get enough tissue to have a conclusive result. They did not. They did find that he had mito but was unable to specify a type. He has had several ear infections, asthma, and chronic bronchialitis. His muscle tone is somewhat weak, however, he started Carnitine 2 weeks ago and now (thank goodness) his lactate, pyruvate, and ammonia are normal. He is now in the hospital with RSV and acute asthma. One day he is doing fine, the next he is back on oxygen. His heart and breathing rate is going through the roof. He is very tired. I am really scared. But, as with any child we have good days, bad days, and GREAT DAYS. These are just a few bad ones. I am so glad to have found this group. There are not many people to talk to about mito. There aren't even that many doctors that know anything about it. I am wondering right now, what other doctor my child needs to be seeing, other than his ped. neurologist and his pediatrician. Well, I am going back to the hospital now, hopefully I will be back in a few days.CfricksPlease contact mito-owner with any problems or questions.

January 3, 2003

Polycitra syrup is a medicine for a high metabolic acidosis problem. It is to help correct the issue. Hope this helps you some. Darla: mom to Asenath Re: New I understand how scary this all can be. My daughter had a stroke this past April and has had many stroke-like episodes as well. She has seizures, is a bi-hemi, and struiggles with low muscle tone and lots of sickness. We are in the beginning phase of determining which type of Mito she has and have also just begun Carnitine and polycitra for a high metabolic acidosis issue. We are here for you whenever you want to vent. I hope your child will recover and be out of the hospital soon. Darla: mom to Asenath Please contact mito-owner with any problems or questions.

January 3, 2003

Polycitra syrup is a medicine for a high metabolic acidosis problem. It is to help correct the issue. Hope this helps you some. Darla: mom to Asenath Re: New I understand how scary this all can be. My daughter had a stroke this past April and has had many stroke-like episodes as well. She has seizures, is a bi-hemi, and struiggles with low muscle tone and lots of sickness. We are in the beginning phase of determining which type of Mito she has and have also just begun Carnitine and polycitra for a high metabolic acidosis issue. We are here for you whenever you want to vent. I hope your child will recover and be out of the hospital soon. Darla: mom to Asenath Please contact mito-owner with any problems or questions.

January 6, 2012

I gradually lost weight with IE over several years but have been at the same

weight for about 2 yr. This is the only way I have ever lost weight and kept it

off. Recently I have been looking in to dieting again but I can't stick with

it. My favorite book is The Overfed Head by Rob s. I used to do a lot of

fasting and that's when my weight really went up. I have ten kids and a chronic

disease, Sarcoidosis, for which I have taken prednisone off and on over the last

35 years. I have not been on it for 2 yr. I always tell people that God

designed our body to stay alive in times of famine and that is what dieting is,

basically.

January 6, 2012

Thanks for sharing that Carol. Your progress is amazing in light of all that you

have in your life (10 kids! + medical condition). Here's to you baby stepping a

bit further along too.

ehugs, Katcha

IEing since March 2007

>

> I gradually lost weight with IE over several years but have been at the same

weight for about 2 yr. This is the only way I have ever lost weight and kept it

off. Recently I have been looking in to dieting again but I can't stick with

it. My favorite book is The Overfed Head by Rob s. I used to do a lot of

fasting and that's when my weight really went up. I have ten kids and a chronic

disease, Sarcoidosis, for which I have taken prednisone off and on over the last

35 years. I have not been on it for 2 yr. I always tell people that God

designed our body to stay alive in times of famine and that is what dieting is,

basically.

>

January 6, 2012