Jump to content
RemedySpot.com
Sign in to follow this  
Guest guest

Introduction

Rate this topic

Recommended Posts

Guest guest

I'm sane and have the documentation to prove it.

on the other hand...

Lenny Yourth

Hubby to

Daddy to Elissa (6), LJ (5), (Almost 4), and (15 months)

is our Liss Kid. She can walk, run, and even slow down and turn as

well as stop. She can also hop, knows her ABC's and feeds herself about as

neatly as the lionesses on National Geographic.

Our AIM/YAHOO screen name is Yourthclan

Share this post


Link to post
Share on other sites
Guest guest

I'm sane and have the documentation to prove it.

on the other hand...

Lenny Yourth

Hubby to

Daddy to Elissa (6), LJ (5), (Almost 4), and (15 months)

is our Liss Kid. She can walk, run, and even slow down and turn as

well as stop. She can also hop, knows her ABC's and feeds herself about as

neatly as the lionesses on National Geographic.

Our AIM/YAHOO screen name is Yourthclan

Share this post


Link to post
Share on other sites
Guest guest

Hi , welcome to the group.

Our third child Hannah has diffuse, bilateral PMG, CP, CVI, intractable

seizures, and is also on the ketogenic diet. She is totally tube fed. She is

also gorgeous with long brown curly hair. Has an awsome smile and a naughty

giggle, but is not filled with energy. She is non mobile and non verbal, and a

delight to have around.

Have I seen your emails at the ketogenic diet list at Yahoo, or am I just

imagining it? Hannah has been on the diet for 21 months so far. How about

? Has it helped? Hannah wont ever be sz free, but the diet helped her more

than anyof the 6 drugs we've tried. We even managed to totally wean one of her

drugs.

Hope to hear more about soon.

(Hannah's mum, Australia)

----- Original Message -----

From: rfsweetpea@...

ne, 's Mom. is five with Lissencephaly (sbh),

microcephaly, cortical visual impairment and seizures. She is on the

ketogenic diet. is gorgeous with long, blonde curly hair. Has an

awesome laugh & is filled with energy. She's a real joy to know. We live in

New Jersey & I'm a single Mom.

Share this post


Link to post
Share on other sites
Guest guest

Hi , welcome to the group.

Our third child Hannah has diffuse, bilateral PMG, CP, CVI, intractable

seizures, and is also on the ketogenic diet. She is totally tube fed. She is

also gorgeous with long brown curly hair. Has an awsome smile and a naughty

giggle, but is not filled with energy. She is non mobile and non verbal, and a

delight to have around.

Have I seen your emails at the ketogenic diet list at Yahoo, or am I just

imagining it? Hannah has been on the diet for 21 months so far. How about

? Has it helped? Hannah wont ever be sz free, but the diet helped her more

than anyof the 6 drugs we've tried. We even managed to totally wean one of her

drugs.

Hope to hear more about soon.

(Hannah's mum, Australia)

----- Original Message -----

From: rfsweetpea@...

ne, 's Mom. is five with Lissencephaly (sbh),

microcephaly, cortical visual impairment and seizures. She is on the

ketogenic diet. is gorgeous with long, blonde curly hair. Has an

awesome laugh & is filled with energy. She's a real joy to know. We live in

New Jersey & I'm a single Mom.

Share this post


Link to post
Share on other sites
Guest guest

Hi , welcome to the group.

Our third child Hannah has diffuse, bilateral PMG, CP, CVI, intractable

seizures, and is also on the ketogenic diet. She is totally tube fed. She is

also gorgeous with long brown curly hair. Has an awsome smile and a naughty

giggle, but is not filled with energy. She is non mobile and non verbal, and a

delight to have around.

Have I seen your emails at the ketogenic diet list at Yahoo, or am I just

imagining it? Hannah has been on the diet for 21 months so far. How about

? Has it helped? Hannah wont ever be sz free, but the diet helped her more

than anyof the 6 drugs we've tried. We even managed to totally wean one of her

drugs.

Hope to hear more about soon.

(Hannah's mum, Australia)

----- Original Message -----

From: rfsweetpea@...

ne, 's Mom. is five with Lissencephaly (sbh),

microcephaly, cortical visual impairment and seizures. She is on the

ketogenic diet. is gorgeous with long, blonde curly hair. Has an

awesome laugh & is filled with energy. She's a real joy to know. We live in

New Jersey & I'm a single Mom.

Share this post


Link to post
Share on other sites
Guest guest

In a message dated 6/6/02 2:24:09 AM Central Daylight Time,

suvi.sairanen@... writes:

> My name is Suvi, my husband is Jari and we have a lovely 4 year old daughter

>

Suvi,

Welcome to the group! I'm so glad that Salla is doing so very well! I

can't imagine your trying time going thru that surgery with Salla. <hugs> So

glad you found the group.. You'll meet some of the finest people in the world

right here.

K.

Father to Cody Colton

PBNH & Polymicrogyria

Share this post


Link to post
Share on other sites
Guest guest

In a message dated 6/6/02 2:24:09 AM Central Daylight Time,

suvi.sairanen@... writes:

> My name is Suvi, my husband is Jari and we have a lovely 4 year old daughter

>

Suvi,

Welcome to the group! I'm so glad that Salla is doing so very well! I

can't imagine your trying time going thru that surgery with Salla. <hugs> So

glad you found the group.. You'll meet some of the finest people in the world

right here.

K.

Father to Cody Colton

PBNH & Polymicrogyria

Share this post


Link to post
Share on other sites
Guest guest

Welsome to our group. You'll find us a very

informative and supportive group.

in Houston, Texas USA

--- Suvi Sairanen wrote:

> Hi All,

>

> In searching the web under polymicrogyria, I

> discovered Your Yahoo-group. In my short message to

> Your moderators I promised to introduce us more

> properly...

>

> My name is Suvi, my husband is Jari and we have a

> lovely 4 year old daughter named Salla. We live in

> Finland ( Scandinavia ). Salla was diagnosed with

> Congenital Bilateral Perisylvian Syndrome ( on a MRI

> ) at the age of 1,5 years. In CBPS the PMG patches

> are bilateral and in the region inside and

> surrounding the Sylvian fissures.

>

> CBPS causes for Salla also left sided hemiparesis.

> She walkes assisted, but mostly she moves by her

> bum. Epilepsy started when she was 2 years old and

> that turned to be the biggest problem during the

> last winter, all her skills started to go downhill.

> We spent weeks and weeks at the hospital, tried all

> possible medicines, but it turned out that her

> epilepsy seemed to be refractory to all medicines.

> She had only atypical absence seizures ( petit mal )

> lasting few seconds, but she had them several tens

> per hour. So at the end of January she had the

> Corpus Callosotomy operation. I was terrified, but

> everything went well and she recovered splendidly.

> Now she has been seizurefree ever since and she has

> only one medicine ( Deprakine, valproate ).

>

> After the operation she has been progressing very

> quickly in all her skills. She is having PT two

> times a week, OT and speech therapy once a week. She

> communicates with eyes, smiles, laughter, sounds,

> shakes head for no, sign language ( at the moment 20

> signs ), she has three words: " aiti " - mom, " hei " -

> hello and " ei " - no. She is getting better and better

> in eating. It's very messy, but she is learning to

> use the spoon and to chew her food. I still chop up

> difficult food, but we are progressing...

>

> Salla loves water, we joined a swimming group for

> disabled children, now she is diving and enjoying

> the swimming assisted. She loves also music,

> video's, especially signed musicv. and familyvideos,

> playing in the sandbox, tricycle riding ( assisted

> ), boating...

>

> She gives You so much , even though the life is

> sometimes quite stressing, I must say that she

> develops us parents mentally more than we can ever

> raise her. We do owe her a lot!

>

> Pls, do correct me if I say something funny,

> expressing my thoughts in english, ain't always so

> easy.

>

> Love to You all...

>

> Suvi, mom to Salla.

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

Share this post


Link to post
Share on other sites
Guest guest

Welsome to our group. You'll find us a very

informative and supportive group.

in Houston, Texas USA

--- Suvi Sairanen wrote:

> Hi All,

>

> In searching the web under polymicrogyria, I

> discovered Your Yahoo-group. In my short message to

> Your moderators I promised to introduce us more

> properly...

>

> My name is Suvi, my husband is Jari and we have a

> lovely 4 year old daughter named Salla. We live in

> Finland ( Scandinavia ). Salla was diagnosed with

> Congenital Bilateral Perisylvian Syndrome ( on a MRI

> ) at the age of 1,5 years. In CBPS the PMG patches

> are bilateral and in the region inside and

> surrounding the Sylvian fissures.

>

> CBPS causes for Salla also left sided hemiparesis.

> She walkes assisted, but mostly she moves by her

> bum. Epilepsy started when she was 2 years old and

> that turned to be the biggest problem during the

> last winter, all her skills started to go downhill.

> We spent weeks and weeks at the hospital, tried all

> possible medicines, but it turned out that her

> epilepsy seemed to be refractory to all medicines.

> She had only atypical absence seizures ( petit mal )

> lasting few seconds, but she had them several tens

> per hour. So at the end of January she had the

> Corpus Callosotomy operation. I was terrified, but

> everything went well and she recovered splendidly.

> Now she has been seizurefree ever since and she has

> only one medicine ( Deprakine, valproate ).

>

> After the operation she has been progressing very

> quickly in all her skills. She is having PT two

> times a week, OT and speech therapy once a week. She

> communicates with eyes, smiles, laughter, sounds,

> shakes head for no, sign language ( at the moment 20

> signs ), she has three words: " aiti " - mom, " hei " -

> hello and " ei " - no. She is getting better and better

> in eating. It's very messy, but she is learning to

> use the spoon and to chew her food. I still chop up

> difficult food, but we are progressing...

>

> Salla loves water, we joined a swimming group for

> disabled children, now she is diving and enjoying

> the swimming assisted. She loves also music,

> video's, especially signed musicv. and familyvideos,

> playing in the sandbox, tricycle riding ( assisted

> ), boating...

>

> She gives You so much , even though the life is

> sometimes quite stressing, I must say that she

> develops us parents mentally more than we can ever

> raise her. We do owe her a lot!

>

> Pls, do correct me if I say something funny,

> expressing my thoughts in english, ain't always so

> easy.

>

> Love to You all...

>

> Suvi, mom to Salla.

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

Share this post


Link to post
Share on other sites
Guest guest

Welcome-it sounds as if Salla is doing very well. My son Izaiah is 9

mths old and has diffuse PMG as well as many other things. He is

developmantally dealyed. I was wondering-what is the surgery you

were talking about? Was it to help w/ seizures? Izaiah's Corpus

Callosum is underdeveloped anyway-but he has been known to have

myclonic seizures at times. I was just wondering. By the way-you

have excellent English!!!

http://izaiahnc.tripod.com/

Jen and Izaiah-9 mths w/ mihf HPE, diffuse PMG, CVI, cleft palate,

myclonic seizures (not for over a mth)

-- In polymicrogyria@y..., " Suvi Sairanen " <suvi.sairanen@e...> wrote:

> Hi All,

>

> In searching the web under polymicrogyria, I discovered Your Yahoo-

group. In my short message to Your moderators I promised to introduce

us more properly...

>

> My name is Suvi, my husband is Jari and we have a lovely 4 year old

daughter named Salla. We live in Finland ( Scandinavia ). Salla was

diagnosed with Congenital Bilateral Perisylvian Syndrome ( on a MRI )

at the age of 1,5 years. In CBPS the PMG patches are bilateral and in

the region inside and surrounding the Sylvian fissures.

>

> CBPS causes for Salla also left sided hemiparesis. She walkes

assisted, but mostly she moves by her bum. Epilepsy started when she

was 2 years old and that turned to be the biggest problem during the

last winter, all her skills started to go downhill. We spent weeks

and weeks at the hospital, tried all possible medicines, but it

turned out that her epilepsy seemed to be refractory to all

medicines. She had only atypical absence seizures ( petit mal )

lasting few seconds, but she had them several tens per hour. So at

the end of January she had the Corpus Callosotomy operation. I was

terrified, but everything went well and she recovered splendidly. Now

she has been seizurefree ever since and she has only one medicine (

Deprakine, valproate ).

>

> After the operation she has been progressing very quickly in all

her skills. She is having PT two times a week, OT and speech therapy

once a week. She communicates with eyes, smiles, laughter, sounds,

shakes head for no, sign language ( at the moment 20 signs ), she has

three words: " aiti " - mom, " hei " - hello and " ei " - no. She is getting

better and better in eating. It's very messy, but she is learning to

use the spoon and to chew her food. I still chop up difficult food,

but we are progressing...

>

> Salla loves water, we joined a swimming group for disabled

children, now she is diving and enjoying the swimming assisted. She

loves also music, video's, especially signed musicv. and

familyvideos, playing in the sandbox, tricycle riding ( assisted ),

boating...

>

> She gives You so much , even though the life is sometimes quite

stressing, I must say that she develops us parents mentally more than

we can ever raise her. We do owe her a lot!

>

> Pls, do correct me if I say something funny, expressing my thoughts

in english, ain't always so easy.

>

> Love to You all...

>

> Suvi, mom to Salla.

>

>

>

>

Share this post


Link to post
Share on other sites
Guest guest

Welcome-it sounds as if Salla is doing very well. My son Izaiah is 9

mths old and has diffuse PMG as well as many other things. He is

developmantally dealyed. I was wondering-what is the surgery you

were talking about? Was it to help w/ seizures? Izaiah's Corpus

Callosum is underdeveloped anyway-but he has been known to have

myclonic seizures at times. I was just wondering. By the way-you

have excellent English!!!

http://izaiahnc.tripod.com/

Jen and Izaiah-9 mths w/ mihf HPE, diffuse PMG, CVI, cleft palate,

myclonic seizures (not for over a mth)

-- In polymicrogyria@y..., " Suvi Sairanen " <suvi.sairanen@e...> wrote:

> Hi All,

>

> In searching the web under polymicrogyria, I discovered Your Yahoo-

group. In my short message to Your moderators I promised to introduce

us more properly...

>

> My name is Suvi, my husband is Jari and we have a lovely 4 year old

daughter named Salla. We live in Finland ( Scandinavia ). Salla was

diagnosed with Congenital Bilateral Perisylvian Syndrome ( on a MRI )

at the age of 1,5 years. In CBPS the PMG patches are bilateral and in

the region inside and surrounding the Sylvian fissures.

>

> CBPS causes for Salla also left sided hemiparesis. She walkes

assisted, but mostly she moves by her bum. Epilepsy started when she

was 2 years old and that turned to be the biggest problem during the

last winter, all her skills started to go downhill. We spent weeks

and weeks at the hospital, tried all possible medicines, but it

turned out that her epilepsy seemed to be refractory to all

medicines. She had only atypical absence seizures ( petit mal )

lasting few seconds, but she had them several tens per hour. So at

the end of January she had the Corpus Callosotomy operation. I was

terrified, but everything went well and she recovered splendidly. Now

she has been seizurefree ever since and she has only one medicine (

Deprakine, valproate ).

>

> After the operation she has been progressing very quickly in all

her skills. She is having PT two times a week, OT and speech therapy

once a week. She communicates with eyes, smiles, laughter, sounds,

shakes head for no, sign language ( at the moment 20 signs ), she has

three words: " aiti " - mom, " hei " - hello and " ei " - no. She is getting

better and better in eating. It's very messy, but she is learning to

use the spoon and to chew her food. I still chop up difficult food,

but we are progressing...

>

> Salla loves water, we joined a swimming group for disabled

children, now she is diving and enjoying the swimming assisted. She

loves also music, video's, especially signed musicv. and

familyvideos, playing in the sandbox, tricycle riding ( assisted ),

boating...

>

> She gives You so much , even though the life is sometimes quite

stressing, I must say that she develops us parents mentally more than

we can ever raise her. We do owe her a lot!

>

> Pls, do correct me if I say something funny, expressing my thoughts

in english, ain't always so easy.

>

> Love to You all...

>

> Suvi, mom to Salla.

>

>

>

>

Share this post


Link to post
Share on other sites
Guest guest

Hi Suvi,

Welcome to the group and, may I say, there is nothing at all wrong with your

english. In fact you express yourself extremely well, and I particularly

identified with your statement " She gives You so much , even though the life is

sometimes quite stressing, I must say that she develops us parents mentally more

than we can ever raise her. We do owe her a lot! " That was profound!

It seems as though you have well and truly come to terms with Salla's diagnosis,

although like all of us I am sure you have your bad moments. How wonderful that

her seizures have improved so well since the surgery, and I hope that her motor

skills and communication continue to progress. With all the assistance you give

her I am sure she will have the best possible chance to grow and develop to her

full potential.

Looking forward to hearing more about your family, and about Salla in

particular.

Regards

- from Melbourne, Australia; mum to Hannah, (5yo; polymicrogyria, variety

of seizure types, ketogenic diet since 6/00 which has reduced seizures, spastic

quad.CP and orthopedic issues that go with it, non-mobile, cortical vision

impairment, possible conductive hearing loss, swallowing and respiratory issues,

non-verbal, global dev. delays, 100% gtube fed by Bard button, and a brilliant

smile)

Share this post


Link to post
Share on other sites
Guest guest

Hi Suvi,

Welcome to the group and, may I say, there is nothing at all wrong with your

english. In fact you express yourself extremely well, and I particularly

identified with your statement " She gives You so much , even though the life is

sometimes quite stressing, I must say that she develops us parents mentally more

than we can ever raise her. We do owe her a lot! " That was profound!

It seems as though you have well and truly come to terms with Salla's diagnosis,

although like all of us I am sure you have your bad moments. How wonderful that

her seizures have improved so well since the surgery, and I hope that her motor

skills and communication continue to progress. With all the assistance you give

her I am sure she will have the best possible chance to grow and develop to her

full potential.

Looking forward to hearing more about your family, and about Salla in

particular.

Regards

- from Melbourne, Australia; mum to Hannah, (5yo; polymicrogyria, variety

of seizure types, ketogenic diet since 6/00 which has reduced seizures, spastic

quad.CP and orthopedic issues that go with it, non-mobile, cortical vision

impairment, possible conductive hearing loss, swallowing and respiratory issues,

non-verbal, global dev. delays, 100% gtube fed by Bard button, and a brilliant

smile)

Share this post


Link to post
Share on other sites
Guest guest

Judy,

Welcome to the group that no one wants to be in. If you go to the homepage

and click on the archives you will learn a great deal about Lewybody Disease

and the day to day experiences our loved ones suffer with. We are a group of

caregivers that share our own experiences with one another. You will find

that having people to share this with is a great source of comfort. This

disease is so complex and so fuucuating, changeing from day to day and hour

to hour.One day they can seem like they are improving and getting better and

a few days later you wouldn't think they have much time left. There are many

types of medications with diffrent results for diffrent patients. You really

have to keep a close eye on these because some of them can have a

devastating affect. There are also some links that lead to medical

diaganosis of Lewybody. I am sure by the end of the day you will receive

many posts sharing many experiences. I am not really all that good at

explaining things but a lot of members are. Just keep reading and if you can

tell us how long your dad has been having problems we can give you and idea

of what to expect. Just hond on tight, you are in for quite a ride. Good

luck, Shirley

>

>Reply-To: LBDcaregivers

>To: LBDcaregivers

>Subject: introduction

>Date: Thu, 07 Nov 2002 16:04:51 -0000

>

>Hi, my name is Judy, I joined this group last night after spending

>the day with my parents. We made a trip to the neurologist and were

>told that Dad had " probable " LBD. a sleep study report was not in at

>the time, but the Dr. seemed pretty sure. I had never heard of this,

>so I came home and got on the computer. disapointed that i found not

>much more info than the Dr. gave, i joined this group in hopes of

>gaining understanding. addmittedly i was very tired and did not spend

>a lot of time looking. will continue searching today. Any info

>anyone can relate will be appreciated. Thanks, Judy

>

_________________________________________________________________

The new MSN 8: advanced junk mail protection and 2 months FREE*

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

Share this post


Link to post
Share on other sites
Guest guest

Hi Judy, welcome to the group. I also joined this group a short time ago in

search of answers and knowledge and found so much more than I ever imagined. The

wisdom, knowledge, experiences, and friendships are real, and I hope you find

what you are looking for, I did.

You can ask anything, and learn everything about every aspect of Lewybody from

the caregivers side to the patients.

Welcome aboard,

Dennis

introduction

Hi, my name is Judy, I joined this group last night after spending

the day with my parents. We made a trip to the neurologist and were

told that Dad had " probable " LBD. a sleep study report was not in at

the time, but the Dr. seemed pretty sure. I had never heard of this,

so I came home and got on the computer. disapointed that i found not

much more info than the Dr. gave, i joined this group in hopes of

gaining understanding. addmittedly i was very tired and did not spend

a lot of time looking. will continue searching today. Any info

anyone can relate will be appreciated. Thanks, Judy

Share this post


Link to post
Share on other sites
Guest guest

Judy,

Welcome and what do you want to know? This disease has so many twists

and turns, you will need some info at times and at other times you'll

need other info.

You can go to group past postings and get just about any answer you

need.

We know you are probably feeling a bit overwhelmed. It will continue

that way until the end and I am still overwhelmed.

The more specific answer you ask for, the less over whelmed you will

feel with the answers.

Donna

To learn more about LBD Disease, please visit the Lewy Body Disease

Association site at:

http://www.lewybodydisease.org

Share this post


Link to post
Share on other sites
Guest guest

Day,

Welcome. Sorry to hear you are severe with this disease. I would

start by going through the archives of this group and also checking

out asthmastory.com as you have not had asthma since birth

apparently.

Good luck and ask any questions.

Sue.

> Hello everyone.I am a 24 year old woman who has dealt with

asthma

> for the last 8 years.My asthma is severe, and I use a nebulizer

> several times a day.I use the medicines severent, pulmicort

> respules, accolate, nexium(reflux affects my asthma), zyrtec for

> allergies, combivent, albuterol, and I'm supposed to use

> theophylline, but after 4 days I stopped.I look forward to

learning

> more about each of you, and also how to manage my illness.

> Day

Share this post


Link to post
Share on other sites
Guest guest

Yeouch that is a bunch, just for asthma. Why both Combivent and

Albuterol? Albuterol is already in the Combivent. Why did you stop the

theophylline? Have you discussed that with your doctors?

;-> Introduction

;->

;->

;-> Hello everyone.I am a 24 year old woman who has dealt

;-> with asthma

;-> for the last 8 years.My asthma is severe, and I use a nebulizer

;-> several times a day.I use the medicines severent, pulmicort

;-> respules, accolate, nexium(reflux affects my asthma), zyrtec for

;-> allergies, combivent, albuterol, and I'm supposed to use

;-> theophylline, but after 4 days I stopped.I look forward to learning

;-> more about each of you, and also how to manage my illness.

;-> Day

;->

;->

;->

Share this post


Link to post
Share on other sites
Guest guest

Yeouch that is a bunch, just for asthma. Why both Combivent and

Albuterol? Albuterol is already in the Combivent. Why did you stop the

theophylline? Have you discussed that with your doctors?

;-> Introduction

;->

;->

;-> Hello everyone.I am a 24 year old woman who has dealt

;-> with asthma

;-> for the last 8 years.My asthma is severe, and I use a nebulizer

;-> several times a day.I use the medicines severent, pulmicort

;-> respules, accolate, nexium(reflux affects my asthma), zyrtec for

;-> allergies, combivent, albuterol, and I'm supposed to use

;-> theophylline, but after 4 days I stopped.I look forward to learning

;-> more about each of you, and also how to manage my illness.

;-> Day

;->

;->

;->

Share this post


Link to post
Share on other sites
Guest guest

--hi

how are you doing. what dose of pulmicort are you taking, and how

often are you using your svn machine.

are you seeing an asthma specialist.

matt- In asthma , " daystarlounge " <daystarlounge@y...>

wrote:

> Hello everyone.I am a 24 year old woman who has dealt with

asthma

> for the last 8 years.My asthma is severe, and I use a nebulizer

> several times a day.I use the medicines severent, pulmicort

> respules, accolate, nexium(reflux affects my asthma), zyrtec for

> allergies, combivent, albuterol, and I'm supposed to use

> theophylline, but after 4 days I stopped.I look forward to learning

> more about each of you, and also how to manage my illness.

> Day

Share this post


Link to post
Share on other sites
Guest guest

--hi

how are you doing. what dose of pulmicort are you taking, and how

often are you using your svn machine.

are you seeing an asthma specialist.

matt- In asthma , " daystarlounge " <daystarlounge@y...>

wrote:

> Hello everyone.I am a 24 year old woman who has dealt with

asthma

> for the last 8 years.My asthma is severe, and I use a nebulizer

> several times a day.I use the medicines severent, pulmicort

> respules, accolate, nexium(reflux affects my asthma), zyrtec for

> allergies, combivent, albuterol, and I'm supposed to use

> theophylline, but after 4 days I stopped.I look forward to learning

> more about each of you, and also how to manage my illness.

> Day

Share this post


Link to post
Share on other sites
Guest guest

The combivent is my rescue inhaler(which sometimes does not

work), and the albuterol goes in my nebulizer.I too think I am on

way too much medicine.I only listed the ones for asthma hehe.I went

off the theophylline, as after 4 days, it was having no affect, and

was making me jittery all the time.I haven't told my doctor yet.I

also tend to get too many antibiotics, I think.I just finished a

course this week, and I feel sick as a dog.Ear ache, body aches,

weird stuff coming out the nose, sorry for the graph.Yet I know in

another month, I will be back on more antibiotics.Thats and

prednisone has been my stay out of the hospital free cards hehe,

when it gets real bad.

Day

> Yeouch that is a bunch, just for asthma. Why both Combivent and

> Albuterol? Albuterol is already in the Combivent. Why did you stop

the

> theophylline? Have you discussed that with your doctors?

Share this post


Link to post
Share on other sites
Guest guest

The combivent is my rescue inhaler(which sometimes does not

work), and the albuterol goes in my nebulizer.I too think I am on

way too much medicine.I only listed the ones for asthma hehe.I went

off the theophylline, as after 4 days, it was having no affect, and

was making me jittery all the time.I haven't told my doctor yet.I

also tend to get too many antibiotics, I think.I just finished a

course this week, and I feel sick as a dog.Ear ache, body aches,

weird stuff coming out the nose, sorry for the graph.Yet I know in

another month, I will be back on more antibiotics.Thats and

prednisone has been my stay out of the hospital free cards hehe,

when it gets real bad.

Day

> Yeouch that is a bunch, just for asthma. Why both Combivent and

> Albuterol? Albuterol is already in the Combivent. Why did you stop

the

> theophylline? Have you discussed that with your doctors?

Share this post


Link to post
Share on other sites
Guest guest

Hello Matt,

I am on .5 mg/2 ml of pulmicort respules every 12 hours, via

nebulizer.My old doc told me to use my machine every 2-3 hours(it

gets that bad).However I do have some days where's its more spaced

out to every 4-6 hours.My doctor gave me a referral, and I will be

making an appointment soon.My last visit with an asthma specialist

was about 3 years ago.I learned that I have some lung damage, etc.

Daystar

> --hi

> how are you doing. what dose of pulmicort are you taking, and how

> often are you using your svn machine.

> are you seeing an asthma specialist.

Share this post


Link to post
Share on other sites
Guest guest

Hello Matt,

I am on .5 mg/2 ml of pulmicort respules every 12 hours, via

nebulizer.My old doc told me to use my machine every 2-3 hours(it

gets that bad).However I do have some days where's its more spaced

out to every 4-6 hours.My doctor gave me a referral, and I will be

making an appointment soon.My last visit with an asthma specialist

was about 3 years ago.I learned that I have some lung damage, etc.

Daystar

> --hi

> how are you doing. what dose of pulmicort are you taking, and how

> often are you using your svn machine.

> are you seeing an asthma specialist.

Share this post


Link to post
Share on other sites

Join the conversation

You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

Loading...
Sign in to follow this  

×
×
  • Create New...