Kim

February 22, 2004

> Laurie,

>

> I know that I SHOULD know this... but when is your DS scheduled for?

Kim,

Right now, it's still scheduled for August 11. But that could change

due to finances and my work schedule. My boss thinks September would

be better. Then I will miss the pool party! :-(

laurie

January 10, 2005

Docs always have a reason for everything... I was told that the rate should be

fast to prevent veins from scarring. But, when you are the mom, you have to

weigh what matters more...aseptic meningits (our daughter has this) or possible

scarring. A fast rate may have a legit rationale but our children have other

needs that may be more pressing. I spent the whole day getting an upper GI and

small bowel follow-through (barium imaging from mouth to asending colon...I

think we are dealing with " something " that is causing colonic enertia) and my

frustration tolerance is low with docs right now.

Here is the point: they use a very small needle on our daughter and start at

6cc/h up to 32 cc/max. Yes...she has gotten occluded! And, we have had to

start all over again...and only one nurse has success with her so it was a

rather tenuous situation. But...if you look at the big picture...a small needle

works better for my daughter. Another time, the needle occluded but we did not

know it!!! The machine beeped after 1 g and then it was fine for the rest of

her IVIG. We put her arm on a board with latex wrap so we did not realize that

she ended up getting sub-Q! She did not even complain...poor thing has high

pain tolerance. Anyway, she got about 5 g to one arm and it was awful (like a

hot sausage) for about 48 hours. Overall, however, I think smaller needles work

when it is difficult to get access.

(mom to la, low everything, gut pain probably associated with the

colon...still fixated on modeling clay...did it all day today in radiology).

sassykay59@... wrote:

In a message dated 1/10/2005 4:49:17 AM Pacific Standard Time,

kaclight@... writes:

Don't let the doc B.S. you about needing to go fast because of the

butterfly. Doc's get nervous about the silliest things sometimes.

When Jess was getting an I.V., we used butterflies many times and

often didn't go above 15cc's per hour. Also, we have lost lines

with catheters as often as one's with butterflies

Kim,

Thank you!! He was worried that Bri would have to get up and go to the

bathroom and we would lose the line. Something will need to change next time, he

simply cannot go through this again--if we can help it.

Sandi, Mom to , age 11. Polysaccharide deficiency, IgG1 subclass

deficiency, Tetrology of Fallot, Pulmonary valve transplant (2003), Mitral valve

stenosis, chronic ear, nose and throat infections--including strep, COPD,

asthma,

severe allergies (including meds), Carnitine deficiency, GERD, suspected

Velocardiofacial syndrome.

March 29, 2005

In a message dated 3/30/05 7:06:47 A.M. Eastern Standard Time, susang@... writes:

is *definitely* the heart of the list, and the go-to gal when *I* getsteamed up at things. She's so calm and cool! I guess that comes from having2 daughters! LOL

Yes this comes from having 2 girls. Plus a few years back I found the attitude dont let things get me to steamed do to LIFE IS TO SHORT... Sue is the one that knows the ins and outs of the group.

NH... Mom to Abby Liz 10/94 Anne 7/99

May 3, 2005

Ursula,

Thanks so much for your response. Very interesting. I will definitely have the

XLA testing done...and push for my nephews to be screened again also. I guess

there is no clear cut rhyme or reason to it's heredity...just to be aware and

pro-active if the healthy kids start to show any signs.

Thanks again!

Kim

> Kim - We've come to know that if Macey is over-tired with no real

> exertion

> then there is something brewing and we'd better get proactive. My

> husband

> has CVID also and his sister has a child who seems to always have

> something.

> Her ped is aware of our situation but they have chosen not to test

> now.

> Whenever my niece is sick and a CBC is done they do look at her

> counts to

> make sure she isn't too bad. White cells are a t-cell response

> and viruses

> are fought by t-cells so since hers are normal we know that this

> part of her

> system is ok. Our oldest daughter is 12, weighs 90 something

> pounds, has a

> history of GERD/asthma/allergies but has a stellar bcell system.

> She also

> has had 3 pneumonias this past year and two pneumonias last

> summer. Go

> figure. It's always in the back of our mind that she might go

> into CVID at

> puberty (which is coming on right about now). I can't even fathom

> being the

> only one in the house not being stuck each month. We've basically

> decided

> that this comes from my husbands family and that's alot for him to

> deal

> with.

>

> I'd get the DNA test done for the XLA. Then if it's possible you

> need to be

> tested to see if you are a carrier. If you are then your female

> relatives

> need to be tested.

>

> Ursula Holleman

> mom to (12 yrs old) and Macey (10 yr. old with CVID,

> Diabetes

> Insipidus, colonic inertia)

> http://members.cox.net/maceyh

>

> Immune Deficiency Foundation - Peer Contact for GA

> http://www.primaryimmune.org

>

> IDF Patient/Family Handbook

> http://www.primaryimmune.org/pubs/book_pats/book_pats.htm

>

> /

>

September 15, 2005

I’m

a single mom, too and had those same thoughts when I started. I told the

doc the worst case scenario would be that I’d lose my job & my house

and wouldn’t be able to feed the kids. He looked at me like I was

nuts and said, no, the worst case is you stop treatment if you get too sick to

work. Well that made much more sense to me than my worst case, so I

started with the idea that I would quit if I had to, whether it was financially

or from sides. There was a point where my insurance changed & I was going

to have to quit, but a friend took up a collection at her office and they got

enough to pay for my meds for the last 4 months and the rest of the dr.

visits. I was truly blessed with that.

I

have some ovarian cysts right now & they need to take out my ovary, but I

can’t afford it till January.

De

Re:

Welcome new member -- Kim Still

Hi Kim, Im pat and welcome to our wonderful nutty group..Im

geno 1,stage 1, grade 2 & undetectable one year after 48 wks of tx..

I was wondering what was your reasons for not doing tx

besides the $, Did you know that you have a higher percentage of beatin

hep & lower chances of progression..when your under 50 yrs

old....Correct me folks if Im wrong about this but I remember something on

these lines..

Have you had a biopsy yet, do you know what geno type, stage

and grade you are?

The pharmacuticals give the meds for free if you qualify..One

of the most important rules is that you can not be drinking ..I stopped as soon

as I came down sick in the hospital and never went back to it..Thank God for

small miracles!..A Big miracle really...I drank all my life...

Congratulations on your family and becoming a granny for the

first time in November,my Bday month!...its fun...I have one granddaughter " Teagan " ,

Deb and Mel got to meet her..Wonderful to have you here...Hugs, Pat

Re:

Welcome new member -- Kim Still

Hi and thanks!! I'm 41 and single mom to 4

girls, ages 13-21. I will be a grandma for the first time in

November. I was diagnosed about 31/2 yrs ago, and have not done treatment

yet. Congrats on your HCV status. I have two friends who did

treatment last year and both are doing fantastic also. Thanks for

introducing yourself and making me feel welcome.

Kim

Motley <dmotley@...>

wrote:

Hello and welcome to our family. We're sorry to have to meet

you like this - but glad you found your way here. We'd love for you to

tell the group a little about you, so jump on in any time.

I'm De a/k/a a/k/a WWD, 48, single mom to 2 teens (yuck!),

diagnosed 10/03 did combo treatment thru 04 and am happy to report that I am

clear 6 months after treatment.

Hope you'll post soon & introduce yourself.

Love & hugs,

De

for Good

Click here to donate to

the Hurricane Katrina relief effort.

Next time I'm coming back as a cat

for Good

Click here to donate to

the Hurricane Katrina relief effort.

September 15, 2005

Thanks De. Something to ponder and meditate on. I know that it will all work out when it is going to. Kim Motley <dmotley@...> wrote:

I’m a single mom, too and had those same thoughts when I started. I told the doc the worst case scenario would be that I’d lose my job & my house and wouldn’t be able to feed the kids. He looked at me like I was nuts and said, no, the worst case is you stop treatment if you get too sick to work. Well that made much more sense to me than my worst case, so I started with the idea that I would quit if I had to, whether it was financially or from sides. There was a point where my insurance changed & I was going to have to quit, but a friend took up a collection at her office and they got enough to pay for my meds for the last 4 months and the rest of the dr. visits. I was truly blessed with that.

I have some ovarian cysts right now & they need to take out my ovary, but I can’t afford it till January.

De

-----Original Message-----From: Hepatitis CSupportGroupForDummies [mailto:Hepatitis CSupportGroupForDummies ] On Behalf Of kim stillSent: Thursday, September 15, 2005 11:25 AMHepatitis CSupportGroupForDummies Subject: RE:

Welcome new member -- Kim Still

Hi Pat,

Have not had a biopsy or anything else done, just enzyme levels checked once a year. The levels are so very, very low compared to other people I know. My dr. at the time said that there is no big hurry on tx. Now, I changed jobs, and insurance companies. The waiting period is 1 yr, which will be up at the end of October. My new dr. wants to send me to a gastroenterologist then. I just know that I am a single mom, can't hardly pay all of my bills as it is, and really don't have the $$ to go to the dr. (It's a shame that I have insurance and can't afford to use it)!! My boss was going to start tx last year, but had to put it on hold, because her copay on the RX would be about $800 per month. After I found that out, I just put the whole tx thing in the back of my head. I realize that the pharmacuetical companies would help out,

but I just don't have the $$ to pay for the initial costs up front (biopsy, etc). I don't drink and haven't since about 6 months before I was diagnosed. I never was a big drinker anyway. I just had alot of symptoms and a real good friend encouraged me to go in for testing. She was right!! That's been 3 1/2 or so years ago. I was taking Milk Thistle diligently, but have gotten out of the habit. It's been a few months now, and I can tell the difference. If I could just learn to make some better food choices (fried foods and Texas just go great together--ya know) and get rid of some of the stress, I know I would not be so tired all of the time. Also, I think I'm afraid that I'll be so sick on the tx that I won't be able to work--and then how do I pay the bills and keep up with the grandbaby and teenagers? So, thanks for letting me ramble on and on. I feel better already. If anyone

knows of any other solutions, let me know. Kim

http://deveauxkennels.tk

mailto:gaila@...

-----Original Message-----From: Hepatitis CSupportGroupForDummies [mailto:Hepatitis CSupportGroupForDummies ]On Behalf Of Pat McBrideSent: September 14, 2005 7:48 PMHepatitis CSupportGroupForDummies Subject: Re: Welcome new member -- Kim Still

Hi Kim, Im pat and welcome to our wonderful nutty group..Im geno 1,stage 1, grade 2 & undetectable one year after 48 wks of tx..

I was wondering what was your reasons for not doing tx besides the $, Did you know that you have a higher percentage of beatin hep & lower chances of progression..when your under 50 yrs old....Correct me folks if Im wrong about this but I remember something on these lines..

Have you had a biopsy yet, do you know what geno type, stage and grade you are?

The pharmacuticals give the meds for free if you qualify..One of the most important rules is that you can not be drinking ..I stopped as soon as I came down sick in the hospital and never went back to it..Thank God for small miracles!..A Big miracle really...I drank all my life...

Congratulations on your family and becoming a granny for the first time in November,my Bday month!...its fun...I have one granddaughter"Teagan", Deb and Mel got to meet her..Wonderful to have you here...Hugs, Pat

Re: Welcome new member -- Kim Still

Hi and thanks!! I'm 41 and single mom to 4 girls, ages 13-21. I will be a grandma for the first time in November. I was diagnosed about 31/2 yrs ago, and have not done treatment yet. Congrats on your HCV status. I have two friends who did treatment last year and both are doing fantastic also. Thanks for introducing yourself and making me feel welcome.

Kim Motley <dmotley@...> wrote:

Hello and welcome to our family. We're sorry to have to meet you like this - but glad you found your way here. We'd love for you to tell the group a little about you, so jump on in any time.

I'm De a/k/a a/k/a WWD, 48, single mom to 2 teens (yuck!), diagnosed 10/03 did combo treatment thru 04 and am happy to report that I am clear 6 months after treatment.

Hope you'll post soon & introduce yourself.

Love & hugs,

De

for GoodClick here to donate to the Hurricane Katrina relief effort.

Next time I'm coming back as a cat

for GoodClick here to donate to the Hurricane Katrina relief effort.

for Good Click here to donate to the Hurricane Katrina relief effort.

September 15, 2005

It is terrible when a person has to pay for necessary surgery.I do not understand that process.I hope things work out soon girl so that the surgery can be done.

Gail

http://deveauxkennels.tk

mailto:gaila@...

-----Original Message-----From: Hepatitis CSupportGroupForDummies [mailto:Hepatitis CSupportGroupForDummies ]On Behalf Of MotleySent: September 15, 2005 2:57 PMHepatitis CSupportGroupForDummies Subject: RE: Kim

I’m a single mom, too and had those same thoughts when I started. I told the doc the worst case scenario would be that I’d lose my job & my house and wouldn’t be able to feed the kids. He looked at me like I was nuts and said, no, the worst case is you stop treatment if you get too sick to work. Well that made much more sense to me than my worst case, so I started with the idea that I would quit if I had to, whether it was financially or from sides. There was a point where my insurance changed & I was going to have to quit, but a friend took up a collection at her office and they got enough to pay for my meds for the last 4 months and the rest of the dr. visits. I was truly blessed with that.

I have some ovarian cysts right now & they need to take out my ovary, but I can’t afford it till January.

De

-----Original Message-----From: Hepatitis CSupportGroupForDummies [mailto:Hepatitis CSupportGroupForDummies ] On Behalf Of kim stillSent: Thursday, September 15, 2005 11:25 AMHepatitis CSupportGroupForDummies Subject: RE: Welcome new member -- Kim Still

Hi Pat,

Have not had a biopsy or anything else done, just enzyme levels checked once a year. The levels are so very, very low compared to other people I know. My dr. at the time said that there is no big hurry on tx. Now, I changed jobs, and insurance companies. The waiting period is 1 yr, which will be up at the end of October. My new dr. wants to send me to a gastroenterologist then. I just know that I am a single mom, can't hardly pay all of my bills as it is, and really don't have the $$ to go to the dr. (It's a shame that I have insurance and can't afford to use it)!! My boss was going to start tx last year, but had to put it on hold, because her copay on the RX would be about $800 per month. After I found that out, I just put the whole tx thing in the back of my head. I realize that the pharmacuetical companies would help out, but I just don't have the $$ to pay for the initial costs up front (biopsy, etc). I don't drink and haven't since about 6 months before I was diagnosed. I never was a big drinker anyway. I just had alot of symptoms and a real good friend encouraged me to go in for testing. She was right!! That's been 3 1/2 or so years ago. I was taking Milk Thistle diligently, but have gotten out of the habit. It's been a few months now, and I can tell the difference. If I could just learn to make some better food choices (fried foods and Texas just go great together--ya know) and get rid of some of the stress, I know I would not be so tired all of the time. Also, I think I'm afraid that I'll be so sick on the tx that I won't be able to work--and then how do I pay the bills and keep up with the grandbaby and teenagers? So, thanks for letting me ramble on and on. I feel better already. If anyone knows of any other solutions, let me know. Kim

http://deveauxkennels.tk

mailto:gaila@...

-----Original Message-----From: Hepatitis CSupportGroupForDummies [mailto:Hepatitis CSupportGroupForDummies ]On Behalf Of Pat McBrideSent: September 14, 2005 7:48 PMHepatitis CSupportGroupForDummies Subject: Re: Welcome new member -- Kim Still

Hi Kim, Im pat and welcome to our wonderful nutty group..Im geno 1,stage 1, grade 2 & undetectable one year after 48 wks of tx..

I was wondering what was your reasons for not doing tx besides the $, Did you know that you have a higher percentage of beatin hep & lower chances of progression..when your under 50 yrs old....Correct me folks if Im wrong about this but I remember something on these lines..

Have you had a biopsy yet, do you know what geno type, stage and grade you are?

The pharmacuticals give the meds for free if you qualify..One of the most important rules is that you can not be drinking ..I stopped as soon as I came down sick in the hospital and never went back to it..Thank God for small miracles!..A Big miracle really...I drank all my life...

Congratulations on your family and becoming a granny for the first time in November,my Bday month!...its fun...I have one granddaughter"Teagan", Deb and Mel got to meet her..Wonderful to have you here...Hugs, Pat

Re: Welcome new member -- Kim Still

Hi and thanks!! I'm 41 and single mom to 4 girls, ages 13-21. I will be a grandma for the first time in November. I was diagnosed about 31/2 yrs ago, and have not done treatment yet. Congrats on your HCV status. I have two friends who did treatment last year and both are doing fantastic also. Thanks for introducing yourself and making me feel welcome.

Kim Motley <dmotley@...> wrote:

Hello and welcome to our family. We're sorry to have to meet you like this - but glad you found your way here. We'd love for you to tell the group a little about you, so jump on in any time.

I'm De a/k/a a/k/a WWD, 48, single mom to 2 teens (yuck!), diagnosed 10/03 did combo treatment thru 04 and am happy to report that I am clear 6 months after treatment.

Hope you'll post soon & introduce yourself.

Love & hugs,

De

for GoodClick here to donate to the Hurricane Katrina relief effort.

Next time I'm coming back as a cat

for GoodClick here to donate to the Hurricane Katrina relief effort.

January 21, 2006

The pain should be subsiding. But everyone is different. You did not say if the implant was under the skin or in the musle. I have heard some say that makes a difference. As a caregiver I can understand where you are coming from. You did not say where you live. Someone from the board may be in your area. When was implanted the first time I was out of my mind. Turk, Duf and a few others were there on the BBS, chat, even the phone when things got to the point I could not handle a lot of what was happening. Feel free to e-mail me if you need. charade799@.... I am usually on several times a day.

Gail Re:

just looking for some support....feeling like i am going to go crazy......

my husband is still in alot of pain and he had his icd in on 1-12

just looking for people to talk with.....cuz i feel like i have been thru so much.

and i dont have anyone to talk to. feeling very scared and alone at this time

Kim

Please visit the Zapper homepage athttp://www.ZapLife.org

January 22, 2006

thanks Gail,

we are from michigan.

they mentioned because he is younger (45) that he had more muscel then fatty area....so maybe that is what is going on.....as far as pain wise......

Kim

May 26, 2006

Glad

to hear things are moving along for you. Tx is scary, but the alternative is

scarier, I think. You’ll be fine. I’ll remember you in my

prayers.

De

PS I

recognize that I use food for comfort, but I am usually powerless to stop

myself. We have a club of food whores here, you know.

(unknown)

For me, it isn't that hard to not smoke, YET! I

just stopped 1 day last week. That's not to say that I won't ever smoke

again, I just don't want to smoke today! Del is right, at

least in my case. I am an addict--hands down! I get obsessive and

compulsive over every little thing, and I am an extremeist. If 2 is good,

then 4 is great and 6 is awesome! Good news is that I recognize the

triggers and signs today and I know what to do to help myself. When I

quit the drugs, I substituted alcohol. I realized what was happening a

few months into it and so I switched to food and work. Whenever something

is going on that I don't want to deal with, I will become a workaholic.

My boss recognizes it and won't let me now! I also use food for comfort;

I recognize that too and don't do that much

anymore! You're right, Del. Noone can help us but ourselves, when

it comes to arresting addictions. I think addiction is horrible and I

wouldn't wish it on my worst enemy.

Good news came today!! The GI called to say that

he understood I didn't have the $$ for the biopsy, so he wants to go ahead and

do the ultrasound and then start treatments. Ultrasound is set for June

16th. Then we will go from there. I did get a copy of the most

recent test done. I am genotype 1a and viral load is over 5

million.

I am happy the ball is rolling and a little scared

too. I just have a feeling that everything will be okay. Thanks for

your support. I will keep everyone informed of progress.

Talk soon,

Kim

July 29, 2006

Hey,

Kim, I’ve been working too much this week and am catching up this

morning. I’m glad your head is back where it needs to be. You can’t

think about the percentage that is not cleared by tx, but the percentage that

IS. Many people are diagnosed too late for tx to be an option, but you and I aren’t

among them. I think we need to do anything we can to avoid a transplant –

because there aren’t enough livers, and we know it’s not a

successful treatment plan.

De

Re: Everyone Please....

Thank you everybody for the encouragement.

That's what I needed ot hear. You're right, . If I can buy just

one more day to watch the girls and my granddaughter grow up, then that's what

I am gonna do. Consequences for a fast lifestyle aren't all that great

after all. I think I am angry at myself for doing the things I did that

caused me to become infected. I think I need to work on forgiving

myself. That's the hard part, but it's something that needs to be done, I

know. I am so grateful that I found this group. You all are GREAT!!

Peace and love,

Kim

Scars are souveniers you

never lose.

..

July 29, 2006

"Our prayers are a precious aroma to our Lord." Kim, I had to do the same thing, as in forgiving myself, and I still don't think I am completely there yet. It's a very hard task to do when I am my worst enemy at times. I must tell you that last night was my first shot, and I thought I was going to get by with little to no side affects, as I didn't feel bad for over 4 hours, where as before I felt terrible within the 2 hours. However, it hit me like a mac truck about 5 hours after, I woke up about 1:00 am running a 104.6 temp. It was awful, but I medicated, and made it through it. This treatment is one day at a time for me. And although extremely difficult, I am glad that I am doing it. Keep me informed Love, hugs, and prayers, Marie -- Re: Kim Kim I took treatment once.The old hard treatment with three shots a day and I am still undetectable for 8 years.There are quite a few here that cleared. Gail RE: Kim Hey, Kim, I’ve been working too much this week and am catching up this morning. I’m glad your head is back where it needs to be. You can’t think about the percentage that is not cleared by tx, but the percentage that IS. Many people are diagnosed too late for tx to be an option, but you and I aren’t among them. I think we need to do anything we can to avoid a transplant – because there aren’t enough livers, and we know it’s not a successful treatment plan. De -----Original Message-----From: Hepatitis CSupportGroupForDummies [mailto:Hepatitis CSupportGroupForDummies ] On Behalf Of kim stillSent: Friday, July 28, 2006 12:33 PMHepatitis CSupportGroupForDummies Subject: Re: Everyone Please.... Thank you everybody for the encouragement. That's what I needed ot hear. You're right, . If I can buy just one more day to watch the girls and my granddaughter grow up, then that's what I am gonna do. Consequences for a fast lifestyle aren't all that great after all. I think I am angry at myself for doing the things I did that caused me to become infected. I think I need to work on forgiving myself. That's the hard part, but it's something that needs to be done, I know. I am so grateful that I found this group. You all are GREAT!! Peace and love, Kim Scars are souveniers you never lose. . Created by Mammy

July 29, 2006

Kim I took treatment once.The old hard treatment with three shots a day and I am

still undetectable for 8 years.There are quite a few here that cleared.

Gail

Re: Everyone Please....

Thank you everybody for the encouragement. That's what I needed ot hear.

You're right, . If I can buy just one more day to watch the girls and my

granddaughter grow up, then that's what I am gonna do. Consequences for a fast

lifestyle aren't all that great after all. I think I am angry at myself for

doing the things I did that caused me to become infected. I think I need to

work on forgiving myself. That's the hard part, but it's something that needs

to be done, I know. I am so grateful that I found this group. You all are

GREAT!!

Peace and love,

Kim

Scars are souveniers you never lose.

.

July 29, 2006

Kim I took treatment once.The old hard treatment with three shots a day and I am still undetectable for 8 years.There are quite a few here that cleared.

Gail

RE: Kim

Hey, Kim, I’ve been working too much this week and am catching up this morning. I’m glad your head is back where it needs to be. You can’t think about the percentage that is not cleared by tx, but the percentage that IS. Many people are diagnosed too late for tx to be an option, but you and I aren’t among them. I think we need to do anything we can to avoid a transplant – because there aren’t enough livers, and we know it’s not a successful treatment plan.

De

-----Original Message-----From: Hepatitis CSupportGroupForDummies [mailto:Hepatitis CSupportGroupForDummies ] On Behalf Of kim stillSent: Friday, July 28, 2006 12:33 PMHepatitis CSupportGroupForDummies Subject: Re: Everyone Please....

Thank you everybody for the encouragement. That's what I needed ot hear. You're right, . If I can buy just one more day to watch the girls and my granddaughter grow up, then that's what I am gonna do. Consequences for a fast lifestyle aren't all that great after all. I think I am angry at myself for doing the things I did that caused me to become infected. I think I need to work on forgiving myself. That's the hard part, but it's something that needs to be done, I know. I am so grateful that I found this group. You all are GREAT!!

Peace and love,

Kim

Scars are souveniers you never lose.

..

November 9, 2006

Kim,

Would you mind if I called you? I have so many questions on this biofeedback

and what it is really like. I'm not great at reading about new ideas and really

understanding them - I love to talk to a real live person!

You can email me off board at cward_ri@....

Thanks so much!

kslaw95 <kslaw95@...> wrote:

Hi .

My son (7 1/2) who is ADD, OCD and poss. BP has been doing

biofeedback since March of this year. He has had approximately 20

sessions (1/2) which would be around 10 hours of actual biofeedback

(remember - the hours, not sessions alone count). As far as the

results, I believe it has helped my son tremendously. I posted

about his progress a few months ago. It was a little shaky at the

end of the summer/beginning to school because he wasn't going as

frequently, due to vacations, sports, school, etc. He also had a

medication change at the end of the summer to Luvox which was

horrible for him - he began again to rage, be very disrespectful to

the teachers, didn't want to listen, you name it. At the beginning

of September, we switched his meds to Wellbutrin (he is also on

Trileptal) and no joke - it literally worked overnight. His

behavior has been wonderful at school. He received all green lights

for the month of October - first time ever.

At that time too, we scheduled weekly sessions at his dr's office -

aside from a few tantrums because he didn't want to go - he began to

show signs of improvement with his behavior at home, especially

towards me. I still have to remember though that he still is a 7

year old boy with 7 year old behavior. It is very hard to

distinguish where his behavior ends and his OCD, etc. begins.

I have also been giving him omega 3's, multivitamins, acidiphilis

and I bathe him at least two times a week in Epsom Salts. So I

believe it is a combination of everything that is helping him get

through this.

At his last dr visit, he told me that we will start to set the

appointments further apart so see if he will continue to progress

and I am hopeful (and I have read while researching biofeedback)

that we might be able to reduce his meds. Of course I will not do

that now since he is doing so well in school - behavior wise, grade

wise is something we are working on now.

Sorry this is so long!

KIM

---------------------------------

Everyone is raving about the all-new beta.

August 9, 2007

I know from experience, my son's levels where just borderline low and would not

have qualified for an immune defiency. That is, until they started to test

function and found that he mounted no response to repeated Prevnar and no

response to Pneumovax and then further testing found that although levels of b

and t cells were only a bit low, what he had was defective-sluggish, slow to

respond and in some cases, as in memory b cells, did not respond at all.

Killer B cell function is another good function test to do as well.

is on home infusions through his port of IVIG every 3 weeks-in fact ,due to

breakthrough and sickness the week before infusions, dose had to be increased

about 30 % to try to prevent having to go to every 2 weeks. (that is still on

the table for us)

So, from our experience, levels alone are not the picture and I recommend

finding a good immunologist who is a specialist in PID's

- in CT mom to 5 ½ years

________________________________

From: [mailto: ] On Behalf Of Ursula

Holleman

Sent: Thursday, August 09, 2007 3:23 PM

Subject: Kim

Kim - has he had any type of function studies? Have they tested his

response to any of his vaccinations?

There are split camps on many defining points of a primary immune

deficiency. Many immunologists do not believe that the subclasses on their

own define a deficiency. Many believe that low IgG levels without

supporting clinical symptoms don't mean a patient is deficienct or has a

dysfunction. We've heard of patients with levels of 400 or so who did

fine. Had infections, cleared them and went on. Then there are patients

who run 800 or so and seem to just stay hooked up to IV's and septic and

clinically " crap " .

But function seems to be the one thing that all the doctors agree on. No

matter what your levels if the function isn't there they don't mean squat.

If he has no ability to mount an antibody response then when push comes to

shove no matter what is level is it won't have any punch behind it to beat

off the bacteria.

I would suggest having a Prevnar, MMR, HiB, DPT challenge done. It will

take 6 weeks or so to complete the whole thing but you'll have alot better

look at his T and B cell function and know what's going on.

Good luck.

Ursula - mom to (14) and Macey (12, CVID)

http://www.primaryimmune.org <http://www.primaryimmune.org>

http://www.jmfworld.org <http://www.jmfworld.org>

http://caringbridge.org/ga/macey/ <http://caringbridge.org/ga/macey/>

May 18, 2008

I was going to say "Ditto" to what Dale wrote, but then I saw where you have a gambling addiction. Are you being treated for this? I'm not a doctor but I think instead of gambling (which I understand it would be very difficult NOT to gamble with the addiction), you should maybe be paying a doctor regarding the addiction....and trying to get help. That is just how I feel about it. Take Care, B. in ILLINOIS feel free to delete

HIGHS:My friend's husband got a diagnosis he has the start of Parkinson and when he fell off a ladder he damaged a part of his head that does brain waves and when he gets under stress it will cause seizures. He has been going for months with wrong doctors saying nothing was wrongGot some green stuff in the ground out in out front yard now, a friend gave us some tiger lilies and another friend gave us catalilies bulbs that will grow. We may not have grass but green is better than mudMy husband saw his dr and some meds he has been put on is making him feel better, feel bad I forced him to go though.Able to help my 'brother' out with his cable bill when he owed extra it has stretched us but I was blessed with the extra money so needed to help him out with it.LOWS:The place is getting worse and my energy level is down to 2 to do it. I even saw the dr but he had now help he isn't going to up my meds but I know I should have it up again but fighting it, I see him again in June.Our co-renters haven't been around for 2 weeks one of them comes back next Tues or Wed.Cannot find my glasses they are in this house someplace I had them on Tues when I went to Friendship house but I came home feeling rotten and lied down and cannot remember where I put them.The younger dog tore garbage and shavings all over the living room floor the other day we cleaned it up but still have shavings in the edgesI have been to the casino and have spent some money that I shouldn't have I made sure all the bills were paid first and will make it till the end of the month, we have a full freezer and cupboards all I need to get is some dog food. And our one co-renter hasn't even paid us for his month yet.PRAYERS:For my friend's husband and her to handle himFor my 'brother' he was born with a bad cleft palate and missing the middle part of his brain. He needs new dentures but no one can seem to help him pay for them due to he is an adult social service will only pay 400$ and his are 1600$For my pastor she is doing so much for everyone else she is wearing herself out. She is a good friend also and she know she gives to everyone else but herself she needs to take time for herself.For the place I volunteer at we deal with kids for breakfast club and some are trying to go to Baptist sponsored campFor the other place I volunteer it deals with low or no income persons some are dealing with drug or alcohol or other addictions, some don't even have a home to live in they 'couch surf' or live in tents.For my husband to deal with the meds he has to take he is still getting diagnosed and they are experimenting with the drugs to find the right dosage.We live on assistance this month we were blessed so things were pretty good but it is a struggle every month and with the price of food going up it is getting worse for all not just us.For my mom to learn of the Lord as I call her bi-weekly and always say 'I love you' but she never repeats it back or any notion to, I don't think she even likes me but I do talk about the Lord to her when ever I get a chance and tell her the reason I am here is cause of Him.For a friend's sister-in-law she is dying and has a young family.For me as my health isn't that great the pain level is at 7-8 out of 10 even with the meds I really want a joint or some MJ but I won't do it. I have a half bottle of cherry whiskey on our dresser and really want to drink it but know if I do then I will be in trouble because I do have an addictive personality and am a gambleholic {haven't been to the casino in 2 weeks}Thanks kim

May 18, 2008

I was going to say "Ditto" to what Dale wrote, but then I saw where you have a gambling addiction. Are you being treated for this? I'm not a doctor but I think instead of gambling (which I understand it would be very difficult NOT to gamble with the addiction), you should maybe be paying a doctor regarding the addiction....and trying to get help. That is just how I feel about it. Take Care, B. in ILLINOIS feel free to delete

HIGHS:My friend's husband got a diagnosis he has the start of Parkinson and when he fell off a ladder he damaged a part of his head that does brain waves and when he gets under stress it will cause seizures. He has been going for months with wrong doctors saying nothing was wrongGot some green stuff in the ground out in out front yard now, a friend gave us some tiger lilies and another friend gave us catalilies bulbs that will grow. We may not have grass but green is better than mudMy husband saw his dr and some meds he has been put on is making him feel better, feel bad I forced him to go though.Able to help my 'brother' out with his cable bill when he owed extra it has stretched us but I was blessed with the extra money so needed to help him out with it.LOWS:The place is getting worse and my energy level is down to 2 to do it. I even saw the dr but he had now help he isn't going to up my meds but I know I should have it up again but fighting it, I see him again in June.Our co-renters haven't been around for 2 weeks one of them comes back next Tues or Wed.Cannot find my glasses they are in this house someplace I had them on Tues when I went to Friendship house but I came home feeling rotten and lied down and cannot remember where I put them.The younger dog tore garbage and shavings all over the living room floor the other day we cleaned it up but still have shavings in the edgesI have been to the casino and have spent some money that I shouldn't have I made sure all the bills were paid first and will make it till the end of the month, we have a full freezer and cupboards all I need to get is some dog food. And our one co-renter hasn't even paid us for his month yet.PRAYERS:For my friend's husband and her to handle himFor my 'brother' he was born with a bad cleft palate and missing the middle part of his brain. He needs new dentures but no one can seem to help him pay for them due to he is an adult social service will only pay 400$ and his are 1600$For my pastor she is doing so much for everyone else she is wearing herself out. She is a good friend also and she know she gives to everyone else but herself she needs to take time for herself.For the place I volunteer at we deal with kids for breakfast club and some are trying to go to Baptist sponsored campFor the other place I volunteer it deals with low or no income persons some are dealing with drug or alcohol or other addictions, some don't even have a home to live in they 'couch surf' or live in tents.For my husband to deal with the meds he has to take he is still getting diagnosed and they are experimenting with the drugs to find the right dosage.We live on assistance this month we were blessed so things were pretty good but it is a struggle every month and with the price of food going up it is getting worse for all not just us.For my mom to learn of the Lord as I call her bi-weekly and always say 'I love you' but she never repeats it back or any notion to, I don't think she even likes me but I do talk about the Lord to her when ever I get a chance and tell her the reason I am here is cause of Him.For a friend's sister-in-law she is dying and has a young family.For me as my health isn't that great the pain level is at 7-8 out of 10 even with the meds I really want a joint or some MJ but I won't do it. I have a half bottle of cherry whiskey on our dresser and really want to drink it but know if I do then I will be in trouble because I do have an addictive personality and am a gambleholic {haven't been to the casino in 2 weeks}Thanks kim

May 18, 2008

I was going to say "Ditto" to what Dale wrote, but then I saw where you have a gambling addiction. Are you being treated for this? I'm not a doctor but I think instead of gambling (which I understand it would be very difficult NOT to gamble with the addiction), you should maybe be paying a doctor regarding the addiction....and trying to get help. That is just how I feel about it. Take Care, B. in ILLINOIS feel free to delete

HIGHS:My friend's husband got a diagnosis he has the start of Parkinson and when he fell off a ladder he damaged a part of his head that does brain waves and when he gets under stress it will cause seizures. He has been going for months with wrong doctors saying nothing was wrongGot some green stuff in the ground out in out front yard now, a friend gave us some tiger lilies and another friend gave us catalilies bulbs that will grow. We may not have grass but green is better than mudMy husband saw his dr and some meds he has been put on is making him feel better, feel bad I forced him to go though.Able to help my 'brother' out with his cable bill when he owed extra it has stretched us but I was blessed with the extra money so needed to help him out with it.LOWS:The place is getting worse and my energy level is down to 2 to do it. I even saw the dr but he had now help he isn't going to up my meds but I know I should have it up again but fighting it, I see him again in June.Our co-renters haven't been around for 2 weeks one of them comes back next Tues or Wed.Cannot find my glasses they are in this house someplace I had them on Tues when I went to Friendship house but I came home feeling rotten and lied down and cannot remember where I put them.The younger dog tore garbage and shavings all over the living room floor the other day we cleaned it up but still have shavings in the edgesI have been to the casino and have spent some money that I shouldn't have I made sure all the bills were paid first and will make it till the end of the month, we have a full freezer and cupboards all I need to get is some dog food. And our one co-renter hasn't even paid us for his month yet.PRAYERS:For my friend's husband and her to handle himFor my 'brother' he was born with a bad cleft palate and missing the middle part of his brain. He needs new dentures but no one can seem to help him pay for them due to he is an adult social service will only pay 400$ and his are 1600$For my pastor she is doing so much for everyone else she is wearing herself out. She is a good friend also and she know she gives to everyone else but herself she needs to take time for herself.For the place I volunteer at we deal with kids for breakfast club and some are trying to go to Baptist sponsored campFor the other place I volunteer it deals with low or no income persons some are dealing with drug or alcohol or other addictions, some don't even have a home to live in they 'couch surf' or live in tents.For my husband to deal with the meds he has to take he is still getting diagnosed and they are experimenting with the drugs to find the right dosage.We live on assistance this month we were blessed so things were pretty good but it is a struggle every month and with the price of food going up it is getting worse for all not just us.For my mom to learn of the Lord as I call her bi-weekly and always say 'I love you' but she never repeats it back or any notion to, I don't think she even likes me but I do talk about the Lord to her when ever I get a chance and tell her the reason I am here is cause of Him.For a friend's sister-in-law she is dying and has a young family.For me as my health isn't that great the pain level is at 7-8 out of 10 even with the meds I really want a joint or some MJ but I won't do it. I have a half bottle of cherry whiskey on our dresser and really want to drink it but know if I do then I will be in trouble because I do have an addictive personality and am a gambleholic {haven't been to the casino in 2 weeks}Thanks kim

May 19, 2008

: i live in Canada and here it may seem good but the dr's don't

give you time but i have mentioned the gambling to my dr. and he said

go to Celebrate Recovery or NA and i am doing both. he has put me on

meds and as far as being on assistance i am only on CPP which is only

500$ per month and for that i DID work many yrs to get qualified for

it. i am getting help and the worst things they did was to build a

casino here in this town we here in Brantford has the highest ratio of

persons on assistance such as disability. and also are a university

town which doesn't help. the meds he has me on help alittle but it for

a higher dose to make it work really good it would counter act my MS

and heart meds. i am just glad i have even done any of the bingo,

navada tickets it isn't only the casino which people see but every

corner store sell the 50cent tickets and they are with the 'bingo' type

tickets are harder not to buy but i am going on my 3'rd week. and YES i

get mad at myself every time i go into the casino but i only use money

i have earned as i do sell Avon and it is my profit from it. and i know

it is an illness. as for dr's i told him he pushes meds but no time to

talk if a person gets 3min they are lucky as here anyway they are way

over worked. i am sorry to complain but gambling like alcholism IS an

illness and when stress about it it makes the other illnesses worse. kim

May 19, 2008

thank yes there is help out there and she needs it rather then ask for asistince

feel free to delete

HIGHS:My friend's husband got a diagnosis he has the start of Parkinson and when he fell off a ladder he damaged a part of his head that does brain waves and when he gets under stress it will cause seizures. He has been going for months with wrong doctors saying nothing was wrongGot some green stuff in the ground out in out front yard now, a friend gave us some tiger lilies and another friend gave us catalilies bulbs that will grow. We may not have grass but green is better than mudMy husband saw his dr and some meds he has been put on is making him feel better, feel bad I forced him to go though.Able to help my 'brother' out with his cable bill when he owed extra it has stretched us but I was blessed with the extra money so needed to help him out with it.LOWS:The place is getting worse and my energy level is down to 2 to do it. I even saw the dr but he had now help he isn't going to up my meds but I know I should have it up again but fighting it, I see him again in June.Our co-renters haven't been around for 2 weeks one of them comes back next Tues or Wed.Cannot find my glasses they are in this house someplace I had them on Tues when I went to Friendship house but I came home feeling rotten and lied down and cannot remember where I put them.The younger dog tore garbage and shavings all over the living room floor the other day we cleaned it up but still have shavings in the edgesI have been to the casino and have spent some money that I shouldn't have I made sure all the bills were paid first and will make it till the end of the month, we have a full freezer and cupboards all I need to get is some dog food. And our one co-renter hasn't even paid us for his month yet.PRAYERS:For my friend's husband and her to handle himFor my 'brother' he was born with a bad cleft palate and missing the middle part of his brain. He needs new dentures but no one can seem to help him pay for them due to he is an adult social service will only pay 400$ and his are 1600$For my pastor she is doing so much for everyone else she is wearing herself out. She is a good friend also and she know she gives to everyone else but herself she needs to take time for herself.For the place I volunteer at we deal with kids for breakfast club and some are trying to go to Baptist sponsored campFor the other place I volunteer it deals with low or no income persons some are dealing with drug or alcohol or other addictions, some don't even have a home to live in they 'couch surf' or live in tents.For my husband to deal with the meds he has to take he is still getting diagnosed and they are experimenting with the drugs to find the right dosage.We live on assistance this month we were blessed so things were pretty good but it is a struggle every month and with the price of food going up it is getting worse for all not just us.For my mom to learn of the Lord as I call her bi-weekly and always say 'I love you' but she never repeats it back or any notion to, I don't think she even likes me but I do talk about the Lord to her when ever I get a chance and tell her the reason I am here is cause of Him.For a friend's sister-in-law she is dying and has a young family.For me as my health isn't that great the pain level is at 7-8 out of 10 even with the meds I really want a joint or some MJ but I won't do it. I have a half bottle of cherry whiskey on our dresser and really want to drink it but know if I do then I will be in trouble because I do have an addictive personality and am a gambleholic {haven't been to the casino in 2 weeks}Thanks kim

May 19, 2008

HI KIM I WAS ON YOUR SIDE I HATE WHEN OTHERS TELL ME HOW TO SPEND MY MONEY THE REASONS I GOING TO THE CASINO ARE THE SAME AS YOURSBUT I DO HAVE TO BE VERY CARE FULL FEEL FREE TO NOTTO READ THIS TAKE CARE GOD BLESS ANNAFrom: kim <ont63a@...>Subject: Re: Kim Date: Monday, May 19, 2008, 2:42 PM