New Here

[Guest guest]

; hang in there you are not alone, my x-wife had

endo really bad and at times would be out of the bed

only to go to the bathroom for a week and half, so

just keep on your md's.

Do you takeany meds for the endo pain,

such as Ponstel, that is what she took and believe me

when she was out I would locate her some anywhere any

time, day or night.

Jeff

=====

Jeff

jkeith@...

__________________________________________________

[Guest guest]

Welcome ,

I know that feeling. I get that from my former coworkers and people at church. They think that because I'm up and around and have a little color in my face means. it's all over. Ha--Make-up gives the color, and being up and around most days is sheer torture, but I can't become a hermit. What they don't realize is that, that may be my first trip out of the house in a week. We definitely get prejudged, also by some of our so called "compassionate" Drs. But that's what this group is for to share things and not feel you are being judged from anyone. Everyone tries to support one another.

Welcome,

[Guest guest]

Welcome Fenn and please make your self at home. Do not worry about questions,

I still have so many!! The experts on this list will be able to give you so

much help and well, I am here to support you and help motivate you.

Temera

who just started again in Jan.

[Guest guest]

Welcome Fenn! I guess the only thing I can tell you is to do what is

best for YOU! And good for you for doing the instructional for five

days - I didn't do that and that was very wrong. I did the basic tape

for six months four or five times a week. Then I added the eight

minute tape to the basic before finally moving to the advance tape.

Once I was at the advance level, I did the advance M-W-F and basic

T-TH. I injuried my shoulder/neck though and have been away from

Taebo for the last seven months. When I do start back with it, I'm

going to go slowly. I will never do the schedule I was up to again.

MY body (and I'm not saying this is for everyone's body) needs more of

a rest time in between Taebo sessions. I would just listen to your

body and do what seems right for you! You don't want to become burnt

out either.

Everyone is different. Some work out with Taebo 6-7 days, everyday.

Some do it only 3-4 times a week. Is the Taebo 1 tape a 30 minute

basic tape and Taebo 2 tape 60 minutes advance tape???? If so, I

would continue to do just the 30 minute until you are ready for the 60

minute. You could also try bits and pieces of the 60 minute to see

where you are with it.

Good luck on your Taebo Journey - it is a wonderful journey to follow

and you have come to the right place to find support and friendship!

le

[Guest guest]

> Hello everyone,

>

> Im new to this site and new to Taebo>

> Fenn

>

Welcome Fenn!

Tell us more about yourself!

[Guest guest]

Fenn,Welcome to the group. Try easing into the Advanced tape when the Basic

tape is starting to feel pretty comftorable. It will never be very easy. You

can always switch back and forth between advanced and basic. :-)

<< Hello everyone,

Im new to this site and new to Taebo. I bought a box set. it has

instructional video, then taebo 1 & 2. I took 5 days going over moves in

instructional, and have done Taebo 1 for the last 3 days. I was a bit

disappointed in lack of info on box about amount of Taebo you can do. So

heres my question.

I am fairly fit and have shed 3 stone in last year, I still have 5 stone to

lose. Is it safe to do Taebo 1 everyday or is it reccomended that you only

do it so many times a week? Then, when do i start on Taebo 2? When I feel

Taebo 1 is no longer challenging? Sorry to be full of questions - lol

Fenn

>>

[Guest guest]

Thanks folks, I better tell you a bit more about myself too. Im 33, happily

divorced, have 2 great kids and am loving every second of this Taebo. Im in Uk,

and loved fitness, cooking, and wildlife. i joined the list to get tips and

keep myself motivated.

Fenn

Re: new here

Fenn,Welcome to the group. Try easing into the Advanced tape when the Basic

tape is starting to feel pretty comftorable. It will never be very easy. You

can always switch back and forth between advanced and basic. :-)

<< Hello everyone,

Im new to this site and new to Taebo. I bought a box set. it has

instructional video, then taebo 1 & 2. I took 5 days going over moves in

instructional, and have done Taebo 1 for the last 3 days. I was a bit

disappointed in lack of info on box about amount of Taebo you can do. So

heres my question.

I am fairly fit and have shed 3 stone in last year, I still have 5 stone to

lose. Is it safe to do Taebo 1 everyday or is it reccomended that you only

do it so many times a week? Then, when do i start on Taebo 2? When I feel

Taebo 1 is no longer challenging? Sorry to be full of questions - lol

Fenn

>>

[Guest guest]

Hi rachelle,

I think when I can handle double time with confidence then i might take a tiny

peek at the advance tape - ) Its great fun though.

Fenn

Re: new here

Welcome Fenn! I guess the only thing I can tell you is to do what is

best for YOU! And good for you for doing the instructional for five

days - I didn't do that and that was very wrong. I did the basic tape

for six months four or five times a week. Then I added the eight

minute tape to the basic before finally moving to the advance tape.

Once I was at the advance level, I did the advance M-W-F and basic

T-TH. I injuried my shoulder/neck though and have been away from

Taebo for the last seven months. When I do start back with it, I'm

going to go slowly. I will never do the schedule I was up to again.

MY body (and I'm not saying this is for everyone's body) needs more of

a rest time in between Taebo sessions. I would just listen to your

body and do what seems right for you! You don't want to become burnt

out either.

Everyone is different. Some work out with Taebo 6-7 days, everyday.

Some do it only 3-4 times a week. Is the Taebo 1 tape a 30 minute

basic tape and Taebo 2 tape 60 minutes advance tape???? If so, I

would continue to do just the 30 minute until you are ready for the 60

minute. You could also try bits and pieces of the 60 minute to see

where you are with it.

Good luck on your Taebo Journey - it is a wonderful journey to follow

and you have come to the right place to find support and friendship!

le

[Guest guest]

Welcome to the Gang Fenn!! Those double-time roundhouses are

killers!! It may be a LONG time before you can do those. I know it

was for me anyway. I have been doing Tae-Bo faithfully for over a

year and they are still difficult for me.

Darcy who thinks you will *know* when you are ready to step it up to

the advanced..

> Hi rachelle,

>

> I think when I can handle double time with confidence then i might

take a tiny peek at the advance tape - ) Its great fun though.

>

> Fenn

[Guest guest]

Welcome to the Gang Fenn!! Those double-time roundhouses are

killers!! It may be a LONG time before you can do those. I know it

was for me anyway. I have been doing Tae-Bo faithfully for over a

year and they are still difficult for me.

Darcy who thinks you will *know* when you are ready to step it up to

the advanced..

> Hi rachelle,

>

> I think when I can handle double time with confidence then i might

take a tiny peek at the advance tape - ) Its great fun though.

>

> Fenn

[Guest guest]

> I am fairly fit and have shed 3 stone in last year, I still have 5

stone to lose. Is it safe to do Taebo 1 everyday or is it

reccomended that you only do it so many times a week? Then, when do

i start on Taebo 2? When I feel Taebo 1 is no longer challenging?

Sorry to be full of questions - lol

>

Fenn,

Welcome to the group! Everybody is different in terms of how often

they workout to see results! I'd say at least give yourself 1 or 2

days off a week to rest! When you are comfortable doing the basic

workout and it begins to feel less challenging, then you can slowly

start adding the advanced workout into your routine! Good luck

shannon

[Guest guest]

Hi guys , My name is Bill Sullivan. I am the founder

of Living with lupus's brother and webmaster of the

page by the same name. When linda's doctor said years

ago that she was , not going to get better but would

die, we began a search to find something to help her

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products called AMBROTOSE and MSM along with many

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ambrotose and msm to be the first 2 legs of a tripod

of things needed for optimum health. AMBROTOSE

stimulating cell to cell communication. A necessary

ingrediant for health. MSM making the cells permeable

for proper intake of nutriments and out-take of

toxins. They both also do or cause other major

benifits from their actions. There is a wealth of

information on the both of these. You can find it

easily by performing a simple search with only the

name of either one. I was looking for the one

supplement that would add most of the amino acids,

vitamins and minerals. Tried lots of products. I HAVE

FINALLY FOUND THE THIRD LEG! I had to join to get it

cheaper, but that was a pleasure. I met all the

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talk to people that explained their prior problems

before taking the product. These included almost

anything you can imagine. From migrains TO LUPUS!

These people told their stories often with tears

streaming down their faces. How they sought treatment

often for many years by doctors only to find the

answer sometimes in the matter of few days in a

product called ROYAL TONGAN LIMU. The product was

introduced to me at the last Living with lupus

Function, which featured pamela D' Pella of the Young

and the restless. It was just given to me. I later

found out the product cost 40 dollars. My mother, who

is a burn victum for 20 years, decided to try it. In 2

weeks even a skeptic in the medical field that I know

very well wanted to try it. Her skin started to lose

that distinctive I was in a fire look. I listened to

Dr. De' Silva , world renouned doctor endorse the

product and try to explain why it worked so well. Dr.

De' Silver also sits on the board that advises those

that determine what goes into the physician's desk

reference. Anyway, I think this product is able to

benefit all. It is full of all the things I was

looking for. Amino acids, Vitamins and minerals,

glyconutrients (polysaccharides) GALACTOSE, MANNOSE

and XYLOSE. Essential and non-essential fatty acids.

What many call live ENZYMES. In addition to this it

contain something called FUCOIDAN. I suggest you

educate yourself on this ingrediant. Find out what

researchers are saying. When any of you try this

product. Please post the effects (and you will have

some) on this page OR email me williamt@....

I am about to give you some information so you can

learn about the company, the product; see

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please refer to my number ID45788301. THE FOUNDATION

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TO JOIN (get products cheaper)

http://www.royaltonganlimu.com/Pages/join.html

MANNATECH

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Bill (501)690-2948

__________________________________________________

[Guest guest]

Hello Missy and welcome. This is a great group!!!!!

Denisa

New Here

Hi all, I'm a new member and just wanted to say hello. This board

was recommended from another site so I thought I'd check it out.

I've been reading posts for the last two days and thought I'd join.

A little about myself is that I am 35 years old and have been in pain

for over 15 years. I have residual pain from cancer surgery site,

osteoporosis, tmj, neuromas, fibro and now they are thinking of

adding rheumatiod arthritis.

As most of you have done, I've played the pain game with docs and

finally got to see a pain doc, 2 weeks ago. I am now happily on the

duragesic patch and in the honeymoon stage! I'm doing things I

haven't done in years.

I'm married to a terrific guy, though who doesn't understand, is

certainly trying and we have 3 boxers who I love to death and have

gotten me through some bad times.

I'm looking forward to being here and getting to know you all!

I hope you are having a pain managing day!

Missy

[Guest guest]

> he suspected it was going on and drugs were found in the

> house so now he is having legal issues. i feel really guilty. i

> KNOW how it is to be controlled by my mom and she is really good at

> it. she makes you feel like you don't have a free will and even

> though i have not always gotten along with her husband i feel AWFUL

> that he is paying because i opened my mouth about the situation.

In my opinion, what you did is nothing to feel guilty about. It is

his responsibility to look out for his own legal issues. If that was

something he suspected, then he could have taken steps to protect

himself from legal trouble. I also don't believe it is the same for

him to be controlled by her as it is for her children to be

controlled by her. He can divorce her, or could have chosen not to

marry her or live with her, usually we don't get to chose our parents.

>

> anyway i'm rambling on too much i'm sure. i guess my main point is

> while i feel better to be away from her, i dread what she will do

> to me because of it. she has ways of doing things that used to

> kind of impress me... and i'm feeling like if i fight back at all

> that i'm stooping to her level and being like her. there are

> things i could do to play with her a little bit, because i know her

> so well, but i don't want to hurt her. at the same, i don't want

> her to think she can hurt me anymore. where is the line?? i know

> i possess some traits of hers that i learned just from being around

> her, but i'm quite sure i'm not borderline. i hate chaos, it's

> against my nature, i don't participate in risky behaviors, etc

> etc. i have problems with relating to people but when i make a

> mistake i do have a CONSCIENCE and apologize and admit it and try

> to learn from it. these things are IMPOSSIBLE for my mom.

I learned how to " fight dirty " from my nada too. Especially when

defending myself from her, I thought the only way to " win " was to be

meaner than she was. I can see the difference now in defending

myself from her and " fighting " her. I don't have to be cruel or

vindictive to keep myself safe. It was difficult to understand that

at first, and she was one person who could always bring out the very

ugliest and worst in me. I just don't give her the chance to do that

anymore. I know you are in a different situation since you have your

sister, but I think it's still possible to protect yourself from her

without having to try to hurt her. Telling the simple truth is one

of those things, it seems like you have already started doing that.

If she is hurt by the truth, that is unfortunate, but not your

fault.

>

> i'm angry at her but i also worry about her. i feel like i can't

> care about her or else i'll be drawn back in. but i don't know

> what i should do... i can hardly even stand the thought of seeing

> her in court but how do i explain to people that a 27 year old is

> intimidated in that way by a parent??

>

> thanks for listening and sorry for the length...

>

>

I think I understand what you mean about feeling like you can't care

about her. I still worry that if I were to talk to my nada (it's

been almost a year) I would end up right back where I was. She would

pick up on my feelings and see that as a weak spot she could work on

until she got back in.

I'm 27 too, it is difficult to explain to other people why I don't

have contact with my parents. It is getting easier for me to know

that for my life this is a good choice right now, other people don't

have to understand that. They also didn't have to live with these

people! ha ha

I have also been in counseling for quite a while, that has been a

tremendous help for me. This list is also a huge help, usually I can

get validation and support by posting here and/or reading others'

posts. (and I ALWAYS take up lots of room with my posts, so far no

one seems to mind )

[Guest guest]

Hi ,

I don’t know where the line is but I really feel for you. you sound like a

very decent and caring person. I am so sorry that you have to go through all

of this. You deserve better.

Colleen

new here

i am new here. i've looked at a few of the lists available and i

really appreciate there is an archive of the messages so that I can

read online, so i think i'll stick around for now.

my mom is bpd... growing up i knew there was something wrong with

her. but a lot of it has just really come out beyond our household

over the last 2 1/2 years. she had a bad childhood and an experience

with her mom in 2000 led to a breakdown which led to the bpd

diagnosis (as well as ptsd, agoraphobia, depression).

i am 27 and aside from living away from my mom a few times, i have

been in her web otherwise. mostly because of my 13 year old sister,

who was adopted when i was 15 and who i felt very responsible for

(because i encouraged the adoption), but also because i am dependent

on my mom.

she can be a good person and a great mother. but sometimes i would

feel like even that was manufactured. by 2000 i guess i had just

gotten to a point where i did not argue, i did not say anything that

i didn't think she wanted to hear, and i didn't really care anymore.

i think that she was way more unstable than usual, obviously, and in

a way i probably took advantage of it because i used it to be more

free of her control because there weren't as many rages. and did i

really want her back to her 'old self'? no...

last year she started using drugs. first cocaine then meth and she

would at times smoke pot and started to drink quite a bit too. i was

at the point where i was apathetic to it all, except to making sure

my sister was taken care of. my sister is terminally ill but her

health is pretty stable.

anyway, one thing led to another and i found my mom's friend doing

meth in my living room one night with my sister and her friend in a

bedroom down the hallway. i knew something had to be done. i just

was so tired of it, and i was also worried about my mom. one morning

she had a big knife in her hand and told me she didn't know what was

going to happen that day, and that i should have her committed.

a social worker of my sister's ended up calling me at work about a

missed appointment of my sister's and i decided to tell her what was

going on. again, i was just so tired of the whole situation and

worried. one thing led to another and then dhs and the cops showed

up at my house. i pretty much told the cop everything i knew, which

was a lot. being my mom's main confidant for many years, and for the

last 2 years never disagreeing with her, she had told me a lot of

things.

i probably said what i said because i am sick of my mother never

taking any responsibility for anything she has ever done. i'm very

angry at her and i'm tired of this 'i'm sick' excuse and 'read about

my ILLNESS and don't be mean to me' stuff. if she knows she's sick,

she would DO SOMETHING TO GET BETTER. and the drugs thing is just

too much for me. i'm not trying to be judgmental but my sister's bio

mom did drugs and because of that she lost my sister and gave my

sister a terminal illness. what my mom did was WRONG. i don't care

why. i really don't.

so now i have limited custody of my sister and after 6 weeks my mom

finally got involved in trying to see her and now i'm starting to

feel really worried, a lot, about seeing my mom again in court this

week and all the things she will say to try to twist things around

and make it my fault. another problem with this is that my mom's

husband was charged with a crime even though he does not use drugs.

he suspected it was going on and drugs were found in the house so now

he is having legal issues. i feel really guilty. i KNOW how it is

to be controlled by my mom and she is really good at it. she makes

you feel like you don't have a free will and even though i have not

always gotten along with her husband i feel AWFUL that he is paying

because i opened my mouth about the situation.

anyway i'm rambling on too much i'm sure. i guess my main point is

while i feel better to be away from her, i dread what she will do to

me because of it. she has ways of doing things that used to kind of

impress me... and i'm feeling like if i fight back at all that i'm

stooping to her level and being like her. there are things i could

do to play with her a little bit, because i know her so well, but i

don't want to hurt her. at the same, i don't want her to think she

can hurt me anymore. where is the line?? i know i possess some

traits of hers that i learned just from being around her, but i'm

quite sure i'm not borderline. i hate chaos, it's against my nature,

i don't participate in risky behaviors, etc etc. i have problems

with relating to people but when i make a mistake i do have a

CONSCIENCE and apologize and admit it and try to learn from it.

these things are IMPOSSIBLE for my mom.

i'm angry at her but i also worry about her. i feel like i can't

care about her or else i'll be drawn back in. but i don't know what

i should do... i can hardly even stand the thought of seeing her in

court but how do i explain to people that a 27 year old is

intimidated in that way by a parent??

thanks for listening and sorry for the length...

[Guest guest]

Dear Missrdl:

Welcome to the group. I am sorry you had to find us, but you will receive a

lot of pactical and supportive help here. I am obsessing about you, having

three people with dementia to take care of.

First, I imagine you have no other cousins or sibling that can help you with

this burden. Your own children, if they are in town, can help with their

grandparents, who are a new case and now they are grown up and responsible. I

know when my nephew and nieces were in their twenties, they helped a lot with my

dad when he had an accident that almost took his life in 1995. They helped a

lot again when he had his LBD and now keep up with my mom.

You may consult a financial planner that can also guide you through your

uncle's financial situation. I know he is using up all his money, but if this

goes on many years, he will be broke soon. His money needs to be protected, so

investing a few hundred on a person that can give you the knowledge you need to

do this, will be a good investment. I am sure you may be able to find

something in the internet as well. You may try the AARP site, I think it is

aarp.org.

My thoughts and prayers are with you and your family. Take care of yourself,

keep us posted and please, let us know how you are coping. Hugs,

Josie

[Guest guest]

Dear Missrdl:

Welcome to the group. I am sorry you had to find us, but you will receive a

lot of pactical and supportive help here. I am obsessing about you, having

three people with dementia to take care of.

First, I imagine you have no other cousins or sibling that can help you with

this burden. Your own children, if they are in town, can help with their

grandparents, who are a new case and now they are grown up and responsible. I

know when my nephew and nieces were in their twenties, they helped a lot with my

dad when he had an accident that almost took his life in 1995. They helped a

lot again when he had his LBD and now keep up with my mom.

You may consult a financial planner that can also guide you through your

uncle's financial situation. I know he is using up all his money, but if this

goes on many years, he will be broke soon. His money needs to be protected, so

investing a few hundred on a person that can give you the knowledge you need to

do this, will be a good investment. I am sure you may be able to find

something in the internet as well. You may try the AARP site, I think it is

aarp.org.

My thoughts and prayers are with you and your family. Take care of yourself,

keep us posted and please, let us know how you are coping. Hugs,

Josie

[Guest guest]

a,

Welcome to this group. People here share ideas and concerns all the

time and I hope you find some answers and help.

6 months is a great period to go being in the 'good' phase. My

mother was recently diagnosed with LBD and physical therapy helped

TREMENDOUSLY. I can't say enough for physical therapy. If not for

that, she would have had to have gone into extended care, but now

she can come home PROVIDED we get her out to physical therapy

regularly. Her neurologist who diagnosed her recommended the

physical therapy. Here are other things that I feel are important

to keeping LBD patients doing as well as possible:

1. Good nutrition, good foods regularly

2. physical therapy to match their needs and particularly to help

with the Parkinson's part of the problem

3. Socialization -- enough can't be said for visitors and people

talking with LBD patients -- they NEED socialization -- even

light " hellos " from nurses or people walking by is so important.

4. Proper medication regulation (always a challenge, but try to be

knowlegable and stay on top of the meds with the help of a good

doctor and good pharmacist who have open minds to consider different

combinations of meds -- my friend who is a pharmacist for instance

told me that drugs are really not meant to be taken in a group, but

singally. This can be difficult if someone is on a lot of meds, but

may be something to try if the medications are not interacting

well. Try spacing out the doses and giving one at a time if

possible)

This is what I think helps a lot, anyway, when working with them.

God Bless and I hope things work out well for you. We're all in

this together, anyway.

Kathy

[Guest guest]

a,

Welcome to this group. People here share ideas and concerns all the

time and I hope you find some answers and help.

6 months is a great period to go being in the 'good' phase. My

mother was recently diagnosed with LBD and physical therapy helped

TREMENDOUSLY. I can't say enough for physical therapy. If not for

that, she would have had to have gone into extended care, but now

she can come home PROVIDED we get her out to physical therapy

regularly. Her neurologist who diagnosed her recommended the

physical therapy. Here are other things that I feel are important

to keeping LBD patients doing as well as possible:

1. Good nutrition, good foods regularly

2. physical therapy to match their needs and particularly to help

with the Parkinson's part of the problem

3. Socialization -- enough can't be said for visitors and people

talking with LBD patients -- they NEED socialization -- even

light " hellos " from nurses or people walking by is so important.

4. Proper medication regulation (always a challenge, but try to be

knowlegable and stay on top of the meds with the help of a good

doctor and good pharmacist who have open minds to consider different

combinations of meds -- my friend who is a pharmacist for instance

told me that drugs are really not meant to be taken in a group, but

singally. This can be difficult if someone is on a lot of meds, but

may be something to try if the medications are not interacting

well. Try spacing out the doses and giving one at a time if

possible)

This is what I think helps a lot, anyway, when working with them.

God Bless and I hope things work out well for you. We're all in

this together, anyway.

Kathy

[Guest guest]

I am not completely sure how to do this, but try logging on to the site. Click on "edit my membership." Under Yahoo Profile, click on "add new profile." The next screen should tell you how to do what you want to do. I think you can also edit your profile on that page. When you are through with each screen, remember to scroll down to the bottom and click on "Save Changes." If you are concerned about privacy, you might want to get a Free Yahoo address to use on the site rather than your personal address. Rita Leyva wrote: OK, how do you change the name that displays for your profile? I just want my first name to dispaly...thanks!

Yahoo! FareChase - Search multiple travel sites in one click.

[Guest guest]

Barbara Kluchin would know what is available in that area. You can

reach her at Barbdwire@...

Tonya

new here

Hi,

I am new here,I live in Fort Bend county near Houston looking for a

nanny that can take care of my four year old child is there any

service I can call in this area.

Thank you

[Guest guest]

Welcome ! I am sorry that I don't have any information re: the

neuro. you are going to see. But, I agree with what you said re:

seeing Dobyns. It would definitely be worth your time, and since you

are now in Indiana, I would go for it. It does sound like complex-

partial seizure activity...that is what my son has. My son, ,

takes Keppra, and his seizures are completely under control with no

apparent side effects.

Again, welcome to the list. I hope you are able to get some answers

quickly.

Best,

Krista

mom to , 5, Bilateral Perisylvian PMG

[Guest guest]

Hello Krista,

Thanks for the encouragement. Things have changed quite a bit. We still have

an appt with Dr. Dobyns, but we are now on our way to the Cleveland Clinic for a

surgical consult.

s old records show that he had very focal activity over the worst

affected area. Our local Neuro who we just saw two weeks ago felt we may be

surgical. Since everything has gone very very fast (way to fast for me). The

local office set an appt for us to go to Cleveland next tuesday, but we were not

able to get 's retests done in time (the old stuff is almost 5 years old).

I called Cleveland and they have rescheduled us for the week after Thanksgiving.

From what I understand we will have our consult on the Monday AM be admitted

and then start a Video EEG, on the second day a PET scan will be done with the

EEG still going (mapping, I think). They have also set up a biopsy for his skin

and also deep muscle (please let them do it while he is under the influence of

something).

Anyway, it is now very late for me and my brain checked out before I started

this note.

Thanks for all the responses and support.

elryan1 wrote:

Welcome ! I am sorry that I don't have any information re: the

neuro. you are going to see. But, I agree with what you said re:

seeing Dobyns. It would definitely be worth your time, and since you

are now in Indiana, I would go for it. It does sound like complex-

partial seizure activity...that is what my son has. My son, ,

takes Keppra, and his seizures are completely under control with no

apparent side effects.

Again, welcome to the list. I hope you are able to get some answers

quickly.

Best,

Krista

mom to , 5, Bilateral Perisylvian PMG

__________________________________________________

[Guest guest]

Hi , I guess I saw this posting late, but when you say " surgical " what

specifically are you referring to? I hope all goes well.

, Mom to age 9 (almost 10) bilateral diffuse PMG and microcephaly

Horne wrote:

Hello Krista,

Thanks for the encouragement. Things have changed quite a bit. We still have an

appt with Dr. Dobyns, but we are now on our way to the Cleveland Clinic for a

surgical consult.

s old records show that he had very focal activity over the worst affected

area. Our local Neuro who we just saw two weeks ago felt we may be surgical.

Since everything has gone very very fast (way to fast for me). The local office

set an appt for us to go to Cleveland next tuesday, but we were not able to get

's retests done in time (the old stuff is almost 5 years old). I called

Cleveland and they have rescheduled us for the week after Thanksgiving.

From what I understand we will have our consult on the Monday AM be admitted and

then start a Video EEG, on the second day a PET scan will be done with the EEG

still going (mapping, I think). They have also set up a biopsy for his skin and

also deep muscle (please let them do it while he is under the influence of

something).

Anyway, it is now very late for me and my brain checked out before I started

this note.

Thanks for all the responses and support.

elryan1 wrote:

Welcome ! I am sorry that I don't have any information re: the

neuro. you are going to see. But, I agree with what you said re:

seeing Dobyns. It would definitely be worth your time, and since you

are now in Indiana, I would go for it. It does sound like complex-

partial seizure activity...that is what my son has. My son, ,

takes Keppra, and his seizures are completely under control with no

apparent side effects.

Again, welcome to the list. I hope you are able to get some answers

quickly.

Best,

Krista

mom to , 5, Bilateral Perisylvian PMG

__________________________________________________

[Guest guest]

Hi Autumn,

Welcome to the group!

Alana

>

> Hi, my name is Autumn and I was diagnosed with asthma at 13. I have

been to ER's numerous times for bad attacks. It finally seemed to be

well under control when I started getting allergy shots 3 years ago

but now it seems like I am back where I started and using my rescue

inhaler at least twice a day. I go to my allergist to see what I

should do. I am currently on advair 250/50 and singulair.

>

> Autumn

>