Need Help

[Guest guest]

Hi Derrick,

My name is Suzie & I'm up in Thunder Bay. I know what you mean about the delay for doctors appointments - we don't even have any Hepatologists or Gastroentologists. I see an Infectious Diseases doc & waited almost a year before I saw him the first time.

I quit drinking after I was diagnosed. I didn't have a drinking problem but it was the only way I could give my liver a break. My LFTs(liver function tests) went down by 25% after I quit - they're still elevated but not as bad as they were.

If you're still drinking they won't let you go on tx or on the liver transplant list. You have to have stopped drinking for at least six months before they'll let you do treatment or put on the transplant list - that's not just for HCV+ people, everybody who needs a transplant has to have been off booze or recreational drugs for at least six months

Good Luck,

Suzie

derickbroughton <dbroughton6@...> wrote:

yes i am, still drinking. my wife and i are taking steps to help me stop. we start counselling next week. it is so hard though. i am from windsor ont. and the wait times for drs. is terrible. derick

Next time I'm coming back as a cat .

[Guest guest]

Hello Derik,

Thanks for your post and Gods Speed in your Recovery.

I have found much peace of mind & a great deal of support in

the rooms of Alcoholics Anonymous/ AA. I think the people in AA

understand Alcoholics like nobody else can. And they generally

have hearts of gold. You can find a 'central office' usually in

your local phone book. And I would say both you and your wife

would be welcomed with open arms. In AA you'd find and be given

the proper tools to live by and the steps to take that can

change your life 180%. Don't give up hope!!! I've

always found a better solution myself in AA. And the miracles

have been countless! One day at a time.

God Bless you both.

Love,

=====

(`'·.¸(`'·.¸ ¸.·'´) ¸.·'´)

«´¨ Love,

** ¨`»

(¸.·'´(¸.·'´ `'·.¸)`' ·.¸)

¸.·´

( `·.¸

`·.¸ )

¸.·)´

(.·´

`*.

*.

The whole world can love you, but that love

will not make you happy. What will make you happy

is the love coming out of you. That is the love that will

make a difference.

~~~ Don Ruiz ~~~

http://alternativehopeforhepc.com

http://alternativehope.royalbodycare.com

***Free Audio Tape & Info Pak - Call: 877 367-9875***

[Guest guest]

Dear :

Now this truly IS an odd circumstance. I thought to do a google search on

little people the other day in hopes of finding advice on a safe car for my very

small (though barely within " norms " ) daughter who has turned 16 and is about

to drive.

I got wonderfully helpful advice.

And now, here comes your question!!!!

My daughter was tiny....she was born at 50th %ile (7 lbs) BUT declined for 18

months until she stabilized at just below the 5th %ile in height and weight.

At 16, she is definitely done growing and is about 5 ft even and just barely

cleared 90 pounds at age 15 1/2. She technically should have been in a car

seat until age 7 or beyond, because she had not hit 40 lbs yet. I checked w/ a

lawyer and the " law " said she had to be in the darned car seat until she was 4

yrs AND 40 lbs. We compromised with a booster seat....and I eventually put

her in the back seat w/ a seat belt and prayed. I'd use a Kangaroo seat now.

Oh well...this is not answering your question.

-M. wore the smallest size undies available until she was almost 9. What

I mean is she wore the same size from age 3 and could still wear them at age

9. I think it was a s size 2-4 from a dept. store. We had to find the

bikini version....very important...and even those we had to fold down because

they came up too far in the back...but she wore them for ever. If we'd

gotten the regular form (not bikini) they would have come up to her neck.

Eventually, The Gap was our saving grace f-- or many years, as they had very

up to date, cool clothes in smallest sizes...so, for example, you could get a

mini version of a girl's size 10 item in size 4....and they ran big...so my

daughter could wear " fashionable " but age appropriate clothes.

I particularly remember her going into third grade, still wearing a size 4-6

or so at age almost 9. Penney's and the dept stores all had " cutsie " doggies

and kitties and bunnies on their size 4's, but GAP was simple and fashionable.

Very expensive though...so we shopped sales, tried to find hand me downs

(not many found) etc.Bought fewer. The stuff wore like iron back then...don't

know about now....

Two other suggestions:

1 - Doll undies. The American girl catalog has nice cotton underwear. And

there are many other doll catalogs (my Twinn is a bit larger than American

GIrl)....what I don't know is whether the doll's undies will wear as well as

real

clothes...or are proportioned correctly...but worth a try. Also, ther is a

wonderful woman who makes doll clothes here in Cincy. Her store is called

Preview Productions (name left over from another business) , phone number(513)

271-2524. THey have a whole store devoted to clothes for American GIrl and other

dolls. It is a " Mom and Pop " operation and I wonder if she has sources for

small sized undies. Dolls come in fairly large sizes and this woman has lots

of wholesale sources. She is very nice and watches her grandson while her

daughter works...so is likely to be sympathetic.

2 - She might want to try calling Procter and Gamble (Pampers) or

(Huggies) 800 lines to see about Pull ups in special sizes.

Pull ups are not the best alternative as I found that they prolonged the

" training " process...but P & G at least did have preemie sized diapers you could

buy. I know this child is older...but who knows, maybe P & G has gotten enough

requests that they make an undersized pull-up trainer. I had to buy the preemie

diapers direct...it is not profitable for the P & G company, but they do it as a

service. Their main number is 513.983.1100, or you can go to any product and

find an 800 number on it for Consumer Services.

I hope this helps.

Feel free to give this woman my email. My daughter was not 3.5 lbs at birth,

but we have dealt with all the inappropriate comments her whole life. I'm

sure that the people on this conference deal with much worse.

My daughter is 16 and I went into Delia's asking for their smallest tops and

pants...the sales woman (5' 8 " of course) asked me " How old is she???? " After

16 years of explaining that age had NOTHING to do with her size, I once again

answered.

Again, I am sure everyone on this conference deals with much much worse.

Most Sincerely,

Anni Gibson

Cincinnati, Ohio

gibby767@...

[Guest guest]

I would

- apply CLAY topically ;

- give tiny quantities of fine green clay orally ;

- apply topically coconut oil or palm oil (good quality) ;

- put a Tachyon Disk underneath the bed

- put a small Tachyon glass cell on the breastbone.

The Tachyon products helped a baby with a severe cow milk allergy.

DCH

Need Help

I sure could use some help from some like minded people. I have a 19 month old toddler that broke out in severe eczema at 3 months. We have tried what I would consider just about everything through the last year. He has been to quite a few ND's, chiropractors and 2 acupuncturists/NAET practitioners. All the muscle testing has resulted in no parasite issues but call it mother's intuition I think he is battling an ever growing parasite issue. He is displaying many of the signs and now they think he has IBS and countless food allergies. It just seems like we have yet to get to the cause. So all this reading has my head spinning and before I spend a bunch of money I really could use any thoughts you might be willing to share with me.1. Colloidal Silver- We had used this at one point when he had a staph infection from all his itching but were warned it would turn him silver. I'm assuming this shouldn't be a concern if the Beck protocol calls for it.2. Blood Electrification- What about a RIFE machine? Getting a toddler to wear a zapper with the wrist straps is difficult at best. 3. Ozonated Water- My thought was to use the SOTA products but they are sold out of the water maker with no date of when they will have the new one in. Should I buy a lower model? I can't afford to buy two and would like to wait for the newest one. What are the implications if I don't do the water with the rest of the protocol? What does the water taste like? Would it still be effective with freshly made pineapple juice or coconut milk?4. Magnetic Pulser- How does this work? I'm sure it will come with instructions but will it be easy to use with a toddler?5. Water filter question- I've read now all about alkaline water and then came across UV light was great and now Ozone water. What do you all use for water filters for your house and for drinking water on a daily basis?6. I have been reluctant to take him to an MD after all they could tell me for eczema was to put petroleum jelly on it or steroids. If by some chance he doesn't have parasites would doing the Beck protocol cause any harm? I have a 2 month old son who is nursing; if I do any of this would it harm him?I realize I have asked a lot of questions. Even if you could provide any insight to just one question I would be ever so grateful. I have been reading and reading and I'm starting to feel paralysis by analysis and I could use some thoughts from people who have gone through this. My support system thinks I should put him on some drug and be done with it. I just want to fix it for this poor child. He is covered in a rash and just miserable with being covered up in this heat. I'm desperate to help him.Many thanks in advance,Abbie

[Guest guest]

I don't know how either, but sure would like to know how too - so anybody who

does know - please write

Arash <arash_biotech@...> wrote: Dear friends:

I need to know how we can produce artificial epilepsy in humanbody to

generate EEG waves like what is in real epilepsy.

It would be of much help if anyone could provide any practical advice

regardingly.

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

How low will we go? Check out Messenger’s low PC-to-Phone call rates.

[Guest guest]

Hi Arash:

What are you using this for? Who would be your subject? What is biotech?

are you doing research?

Maybe you can get the artificial epileptic brain waves through homeopathy.

These remedies are given to people and they produce a similar effect that you

are trying to cure. At first you get worst and then you get better. I believe

that it would only work on people who already have the tendency to have

seizures.

It might be worth investigating!

pati bowers <tealbrandy@...> wrote:

I don't know how either, but sure would like to know how too - so

anybody who does know - please write

Arash <arash_biotech@...> wrote: Dear friends:

I need to know how we can produce artificial epilepsy in humanbody to

generate EEG waves like what is in real epilepsy.

It would be of much help if anyone could provide any practical advice

regardingly.

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

How low will we go? Check out Messenger’s low PC-to-Phone call rates.

[Guest guest]

I too am curious about why you need this information.

Electroconvulsive shock therapy (ECT) induces a 20 second generalized

seizure that produces EEG changes.

See the following sources:

http://en.wikipedia.org/wiki/Electroconvulsive_therapy

http://electroconvulsive-therapy.mindbit.com/

http://www.antipsychiatry.org/ect.htm

As the saying goes: " Don't try this at home. "

<lindae321 (DOT)

com> To

Sent by:

@yah cc

oogroups.com

Subject

Re: [ ] need help

10/14/2006 02:01

PM

Please respond to

@yah

oogroups.com

Hi Arash:

What are you using this for? Who would be your subject? What is biotech?

are you doing research?

Maybe you can get the artificial epileptic brain waves through homeopathy.

These remedies are given to people and they produce a similar effect that

you are trying to cure. At first you get worst and then you get better. I

believe that it would only work on people who already have the tendency to

have seizures.

It might be worth investigating!

pati bowers <tealbrandy@...> wrote:

I don't know how either, but sure would like to know how too - so anybody

who does know - please write

Arash <arash_biotech@...> wrote: Dear friends:

I need to know how we can produce artificial epilepsy in humanbody to

generate EEG waves like what is in real epilepsy.

It would be of much help if anyone could provide any practical advice

regardingly.

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

How low will we go? Check out Messenger’s low PC-to-Phone call

rates.

[Guest guest]

....yes, it can. more often than not it does.

did he get rid of it with drug treatment or did his body take care of it

alone?

it's probably best to assume it's still in there somewhere and be ever

vigilant to maintain a lifestyle that doesn't fuel it.

> need help

>

>

> my husband had hepatitis c and i want to know can it come back.

> thank you beth

>

>

>

>

>

[Guest guest]

....yes, it can. more often than not it does.

did he get rid of it with drug treatment or did his body take care of it

alone?

it's probably best to assume it's still in there somewhere and be ever

vigilant to maintain a lifestyle that doesn't fuel it.

> need help

>

>

> my husband had hepatitis c and i want to know can it come back.

> thank you beth

>

>

>

>

>

[Guest guest]

You must work with the Audiologist for your son and the Audie needs to work

with him a great deal. It will help the Audie for you to make many notes of

just exactly what conditions he doesn't respond, what steps you may have done

to help him that didn't work, if the things you did seemed to make it worse,

etc. You need to get all the info you can to share with the audiologist.

Good Luck with this. I know it must all seem overwhelming to your son ( & you

as well) at times. Five months is really a very short time though to expect

things to be great at all times. There will always be conditions in where

your son will need to change to another program to deal with the sounds around

him. It may take a good while for him to learn to do that with ease. It is

a bit confusing at times. I've had my CI since 2003, I'm 65 yrs old and I

" still " get confused at times. In changing situations/conditions, changing

to another program helps at times and at other times, not. It's really best

if he can figure it out for himself on changing the programs to suit the

situation. I would think that at 5 years old, he can be taught to change his

programs. He is still learning though and his brain is adjusting to all this

new traffic of sounds coming in. It will just take more time, more tweaking

on the programs, and then more time of adjustments to the program changes.

Good luck.

************************************** See what's free at http://www.aol.com.

[Guest guest]

Hello

Five months is a short amount of time. Some kids take a little longer than

most. My daughter did take longer than most children.

These are some of the things that we did:

a) we took her to a neuro-developmental pediatrician to have her evaluated

and to rule out any other syndromes, developmental issues. None were found.

we found a problem with one of her wires (she had bitten one and it

worked intermittently).

c) we changed her CI programming speed.

After all this and allowing some time for her to catch up she started

talking. It took Gail over a year to start making meaningful noises.

I recommend changing out cords and batteries, and visiting the CI

audiologist for a new mapping.

How old is your son?

Pennie

mom to Gail (5 yr old bilateral Freedom user) and (3 yrs old

hearing, when he wants to)

************************************** See what's free at http://www.aol.com.

[Guest guest]

Would you please tell us a little more about your son. How old is he, was he

always deaf, was he implanted in two ears or one, does he have any other

physical problems? What processor does he have and how many mappings has he

had? What does his audie say?

Connie

t3a_26 <t3a_26@...> wrote:

My son has CI for 5 months, but he still has problem in conditioning

respond and he is'nt aware to the sound. What should I do?

" The Miracle at Ohio State "

aka Nucleus Freedom

Implanted 10/04/2005

Activated 11/1/2005

Surgery: Ohio State University

Surgeon: Dr. Bradley Welling

http://internalmedicine.osu.edu/article.cfm?ID=2021

[Guest guest]

Thank you for your respond to me. My son age is 23months and he will 2 years old

on may 28, he implanted in his right ear. We've visited the psychiater and the

result everything is normal,except his sleeping pattern,he is very active child

so he usually very hard to sleep at noon or night. His processor is the nucleus

freedom sp. He has done mapping for 3 times and according to his audiologist,

his mapping is the maximum program that human can receive.

Yani

Re: Need Help

Would you please tell us a little more about your son. How old is he, was he

always deaf, was he implanted in two ears or one, does he have any other

physical problems? What processor does he have and how many mappings has he had?

What does his audie say?

Connie

t3a_26 <t3a_26 (DOT) com> wrote:

My son has CI for 5 months, but he still has problem in conditioning

respond and he is'nt aware to the sound. What should I do?

" The Miracle at Ohio State "

aka Nucleus Freedom

Implanted 10/04/2005

Activated 11/1/2005

Surgery: Ohio State University

Surgeon: Dr. Bradley Welling

http://internalmedi cine.osu. edu/article. cfm?ID=2021

[Guest guest]

Hi Pennie thank you for your respond to me. My son is 23moths and will be 2

years old on may 28. He is using nucleus freedom sp now, I always check for his

wire every morning and nothing problem with it and his schedule for mapping on

may 14. If you don't mind, can I know how did you teach your daughter the 6

lings sound and make her respond to the sound?

Yani

Re:Need Help

Hello

Five months is a short amount of time. Some kids take a little longer than

most. My daughter did take longer than most children.

These are some of the things that we did:

a) we took her to a neuro-developmental pediatrician to have her evaluated

and to rule out any other syndromes, developmental issues. None were found.

we found a problem with one of her wires (she had bitten one and it

worked intermittently) .

c) we changed her CI programming speed.

After all this and allowing some time for her to catch up she started

talking. It took Gail over a year to start making meaningful noises.

I recommend changing out cords and batteries, and visiting the CI

audiologist for a new mapping.

How old is your son?

Pennie

mom to Gail (5 yr old bilateral Freedom user) and (3 yrs old

hearing, when he wants to)

************ ********* ********* ******** See what's free at http://www.aol.

com.

[Guest guest]

Thank you so much for sharing your experience and your advice to me. I really

appreciate it and this is encourage me to not feel down.

Yani

Re:Need Help

You must work with the Audiologist for your son and the Audie needs to work

with him a great deal. It will help the Audie for you to make many notes of

just exactly what conditions he doesn't respond, what steps you may have done

to help him that didn't work, if the things you did seemed to make it worse,

etc. You need to get all the info you can to share with the audiologist.

Good Luck with this. I know it must all seem overwhelming to your son ( & you

as well) at times. Five months is really a very short time though to expect

things to be great at all times. There will always be conditions in where

your son will need to change to another program to deal with the sounds around

him. It may take a good while for him to learn to do that with ease. It is

a bit confusing at times. I've had my CI since 2003, I'm 65 yrs old and I

" still " get confused at times. In changing situations/conditio ns, changing

to another program helps at times and at other times, not. It's really best

if he can figure it out for himself on changing the programs to suit the

situation. I would think that at 5 years old, he can be taught to change his

programs. He is still learning though and his brain is adjusting to all this

new traffic of sounds coming in. It will just take more time, more tweaking

on the programs, and then more time of adjustments to the program changes.

Good luck.

************ ********* ********* ******** See what's free at http://www.aol.

com.

[Guest guest]

Hi Yani,

I suspect you misunderstood what the Audie was saying, or they did

not explain it correctly, there is no maximum number of times a

person can be mapped or have the processor adjusted. He might have

been referring to the maximum settings for a particular program

strategy there are limits to the gains (volume settings in plain

language) for each electrode on any given program, and it is possible

the audie has set his program to the max volume for the particular

map he is using at the moment. There are over 80,000 possible maping

combinations for the freedom and I doubt the audie has tried them all

yet. If you are really concerned that things are not working

correctly for your son yet, request that the Audie bring in one of

the Cochlear specialists, they will send a company audie to assist

your own to adjust your sons processor. The Implant manufacturers all

do this and especially with yong children it is sometimes a wise

decision to request this. The company specialists deal with these

problems all the time and are experts, where your own Audie may not

deal with difficult cases often so they can many times work out

specific problems much faster. Keep in mind at 2 years old your son

cannot tell you or the Audie what is happening so it is very

difficult to know what works best, you really need someone who

specializes i these types of issues.

Best of luck and keep us posted we are here to help.

Regards,

Mike " Ears Hopin " P

> My son has CI for 5 months, but he still has problem in

conditioning

> respond and he is'nt aware to the sound. What should I do?

>

> " The Miracle at Ohio State "

> aka Nucleus Freedom

> Implanted 10/04/2005

> Activated 11/1/2005

> Surgery: Ohio State University

> Surgeon: Dr. Bradley Welling

> http://internalmedi cine.osu. edu/article. cfm?ID=2021

>

>

[Guest guest]

Hello Yani

Sorry- I like to talk and it extends into my writting

My daughter attended an auditory oral preschool. First she received

45 minute speech therapy sessions three times a week as a baby till 2

1/2 years old. At 2 1/2 yrs old she attended this school for a full

day preschool program (6 hours daily) five times a week.

She stayed with this schedule until she graduated this program this

past summer right before kindergarten.

She has started mainstream kindergarten this year and at times it was

difficult for her to be understood by her teacher and peers so that

has fustrated her. I did notice significant change in her speech and

language now that she is six months post bilaterally implanted. She

is five 1/2 now and she still receives speech therapy 5 times a week

for half hour sessions.

So I wrote out our whole history to let you know it can take awhile

to catch up. Gail has a profound sensory neural hearing loss that the

strongest FM system style hearing aids did nothing to help her hear

with.

Some of the things the speech therapists did in sessions was get down

on the floor and try to get Gail aware of sound by:

banging and shaking different instruments (toy drums, maracas,

xylophone, etc..)

reading repetitive books (Brown bear, brown bear what do you see? by

eric carle)

trying to que her to ask for things by putting them in front of her

and holding on to them until she asked for them (she had to ask by

touching her hand to chest and try to repeat the word " more " )she got

it in the beginning by making any sound and then she woud only get it

if she tried to copy saying the word " more " only.. it sounds harsh..

some sessions were for me... but this teaches them that you want them

to try to copy and mimic you first with hand signals and any sounds

and then with the correct words

Also making a big deal at home if the phone rings or the door bell

rings and very animated say things like " I heard that " , " did you hear

that " ? etc..

Copy everyday at home activity in play settings: like answer a toy

telephone and very animated say " hello, how are you?, oh yes Gail is

here " and hand her the phone.. you could use your real phone or your

own childs name too

Oh and lets not forget the power of music.. one thing i noticed right

away was Gail respond to her videos set to music. She had watched

these many times before her implant. We had everything from the " baby

einstein collection " , and " do the alphabet by sesame street " videos.

We loved " Brainy baby " videos for teaching new language.

Try some or all of these things. Talk with a licensed speech

therapist for more ideas, or better yet visit an auditory oral school

and observe a therapy in session. Also just because your son is set

at 2400 speed on his processor that doesnt mean they cant still do

alot to tweak his programming. If they tell you there isnt anymore

they can do maybe try another audilogist or Cochlear implant center.

Oh and the six lings didnt come till after Gail was able to pay

attention to sounds and also correctly try to copy them.

Hope some of these suggestions work. Does you son receive speech

therapy? do you have a school you could visit near by?

I have articles on facilating conversation with your child I can send

to you. Oh and one of our favorite books on the subject was " More

Than Words: Helping Parents Promote Communication and Social Skills

in Children with Autism Spectrum Disorder " by Fern Sussman(dont let

the title scare you away) it gives great suggestions how to get your

child to pay attention to you and that is a problem some newly

cochlear implanted children go through in the beginning.

Its pricey and might be hard to find but worth it.

Things will get better.

Pennie

mom to Gail( 5 yrs old bilateral Freedom user) and (3

years old, hearing when he wants to)

> In , Yani Gunawan <t3a_26@...> wrote:

>

> Hi Pennie thank you for your respond to me. My son is 23moths and

will be 2 years old on may 28. He is using nucleus freedom sp now, I

always check for his wire every morning and nothing problem with it

and his schedule for mapping on may 14. If you don't mind, can I know

how did you teach your daughter the 6 lings sound and make her

respond to the sound?

> Yani

>

>

> Re:Need Help

>

> Hello

>

> Five months is a short amount of time. Some kids take a little

longer than

> most. My daughter did take longer than most children.

>

> These are some of the things that we did:

> a) we took her to a neuro-developmental pediatrician to have her

evaluated

> and to rule out any other syndromes, developmental issues. None

were found.

>

> we found a problem with one of her wires (she had bitten one and

it

> worked intermittently) .

>

> c) we changed her CI programming speed.

>

>

> After all this and allowing some time for her to catch up she

started

> talking. It took Gail over a year to start making meaningful noises.

>

> I recommend changing out cords and batteries, and visiting the CI

> audiologist for a new mapping.

>

>

> How old is your son?

>

> Pennie

> mom to Gail (5 yr old bilateral Freedom user) and (3

yrs old

> hearing, when he wants to)

>

> ************ ********* ********* ******** See what's free at

http://www.aol. com.

>

>

[Guest guest]

, I am so sorry to hear of your daughter's struggles with this horrible disease. Don't you just hate it when you know there is something there and the docs just aren't listening. We did months of that with pain and a lump only to end up with emergency surgery. What a nightmare when they just don't get it that you know that something is wrong. What a nightmare and kids can be cruel. I remember when my daughter did the 40-lb weight shift in a few weeks-horrible for them and then to be teased for something they can not control. Interesting how they won't say it is lupus, what do they say it is then? My daughter is also ANA negative but her doc is sure she is Lupus and poly, she calls it Rheupus. Guess it depends on the doc. So, what is she taking now to control all of this? Do you see a nephrologist too? I am so sorry to hear of her struggles and wish there was more I could do besides my constant prayers

and pleadings for a cure. e, mom to "joe" 20 poly + lupustim chesney <tec1959@...> wrote: It has been a while since I wrote this site. Mydaughter Jen and I have been members at least since2003. Jen was DC in 2001 with pauc, then in 2005 withpoly, she has always had eye problems. In Feb of thisyear Jen developer lumps on her back and hip. I wastold by my doctor they were zits not to worry.with anMRI done it showed she had 13 masses growing. Thelumps

began growing faster, with 2 e.r visits and 3doctors she finally had two big ones removed and thedoctor sent to mayo who said it was lupus. She wentback to school with a fever in April which the doctorsaid it was OK and then one week later the lumps weredrained because blood was in them. After that Jen'sfevers went up and down and the highest 104. I finallytook her to children memorial in Chicago. They told meJen was in kidney failure. She was in the hospital 9days she had steroid thru iv for 3 days and chemo for1. She was release and on April 25 after being off ofschool since march 20Th she rejoin her friends atschool Needless to said who were cruel because duringthis time Jen gained and lost weight and then in therecent months gained over 40 pounds. Jen goes to chem once a month. They told me she hasmajor inflammation of her kidneys and said its notlupus because she only has 3 of the 11 markers and

shedoes not have a positive Ana. They told me she couldstill lose her kidney even if her functions went backup because of the inflammation. A skin doctor alsotold me Jen has Kimura disease. I was wonder if anyone else has experience this or knows anyone withthis. Thanks for listening to me ramble on in Lake in the Hills ILLINOIS__________________________________________________________Boardwalk for $500? In 2007? Ha! Play Monopoly Here and Now (it's updated for today's economy) at Games.http://get.games./proddesc?gamekey=monopolyherenow

Take the Internet to Go: Go puts the Internet in your pocket: mail, news, photos more.

[Guest guest]

Hi ........I was actually just thinking about you guys the other day...........I am so sorry that you guys are going through an awful time. Kids can be so cruel at this age.......Holly has definitely figured out who her friends are over this past year or so. I will keep you guys in my thoughts and prayers. Take care and if you need anything just holler. Lets get the girls hooked up again. Hugs

n and Holly~13 years oldsystemic jra since 9/94Get a sneak peek of the all-new AOL.com.

[Guest guest]

May - I am soo sorry to hear what Jen and you have had to endure. I don't have the words to comfort or assure you, but we will pray for her recovery. I hope that the doctor's can find something out soon!

Alia and Caroline, age 5, poly and uveitis

need help

It has been a while since I wrote this site. My

daughter Jen and I have been members at least since

2003. Jen was DC in 2001 with pauc, then in 2005 with

poly, she has always had eye problems. In Feb of this

year Jen developer lumps on her back and hip. I was

told by my doctor they were zits not to worry.with an

MRI done it showed she had 13 masses growing. The

lumps began growing faster, with 2 e.r visits and 3

doctors she finally had two big ones removed and the

doctor sent to mayo who said it was lupus. She went

back to school with a fever in April which the doctor

said it was OK and then one week later the lumps were

drained because blood was in them. After that Jen's

fevers went up and down and the highest 104. I finally

took her to children memorial in Chicago. They told me

Jen was in kidney failure. She was in the hospital 9

days she had steroid thru iv for 3 days and chemo for

1. She was release and on April 25 after being off of

school since march 20Th she rejoin her friends at

school Needless to said who were cruel because during

this time Jen gained and lost weight and then in the

recent months gained over 40 pounds.

Jen goes to chem once a month. They told me she has

major inflammation of her kidneys and said its not

lupus because she only has 3 of the 11 markers and she

does not have a positive Ana. They told me she could

still lose her kidney even if her functions went back

up because of the inflammation. A skin doctor also

told me Jen has Kimura disease. I was wonder if any

one else has experience this or knows anyone with

this.

Thanks for listening to me ramble on

in Lake in the Hills ILLINOIS

__________________________________________________________

Boardwalk for $500? In 2007? Ha! Play Monopoly Here and Now (it's updated for today's economy) at Games.

http://get.games./proddesc?gamekey=monopolyherenow

AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com.

[Guest guest]

Hello

Thanks for writing. The doctors say it is not lupus

yet because the ana is neg. The kidney doctor says she

has crescentic glomerulonephritis which is

inflammation of the kidneys. Jen has alot of blood and

protein in her urine. The skin doctors who examine and

remove a lump say she has kimura diease which is of

unknown orgin and is found mostly in japanese men.

Which we are not. The chemo is suppose to help with

the inflammation. This is the first tme Jen has ever

been on steroids. I am glas she is 5'8 but the weight

has been very difficult to have becasue she fears

going back to school in sept with more on her.

--- bound for london <boundforlondon@...> wrote:

> ,

>

> I am so sorry to hear of your daughter's struggles

> with this horrible disease. Don't you just hate it

> when you know there is something there and the docs

> just aren't listening. We did months of that with

> pain and a lump only to end up with emergency

> surgery. What a nightmare when they just don't get

> it that you know that something is wrong.

>

> What a nightmare and kids can be cruel. I remember

> when my daughter did the 40-lb weight shift in a few

> weeks-horrible for them and then to be teased for

> something they can not control. Interesting how they

> won't say it is lupus, what do they say it is then?

> My daughter is also ANA negative but her doc is sure

> she is Lupus and poly, she calls it Rheupus. Guess

> it depends on the doc. So, what is she taking now to

> control all of this? Do you see a nephrologist too?

> I am so sorry to hear of her struggles and wish

> there was more I could do besides my constant

> prayers and pleadings for a cure.

>

> e, mom to " joe " 20 poly + lupus

>

> tim chesney <tec1959@...> wrote:

> It has been a while since I wrote this

> site. My

> daughter Jen and I have been members at least since

> 2003. Jen was DC in 2001 with pauc, then in 2005

> with

> poly, she has always had eye problems. In Feb of

> this

> year Jen developer lumps on her back and hip. I was

> told by my doctor they were zits not to worry.with

> an

> MRI done it showed she had 13 masses growing. The

> lumps began growing faster, with 2 e.r visits and 3

> doctors she finally had two big ones removed and the

> doctor sent to mayo who said it was lupus. She went

> back to school with a fever in April which the

> doctor

> said it was OK and then one week later the lumps

> were

> drained because blood was in them. After that Jen's

> fevers went up and down and the highest 104. I

> finally

> took her to children memorial in Chicago. They told

> me

> Jen was in kidney failure. She was in the hospital 9

> days she had steroid thru iv for 3 days and chemo

> for

> 1. She was release and on April 25 after being off

> of

> school since march 20Th she rejoin her friends at

> school Needless to said who were cruel because

> during

> this time Jen gained and lost weight and then in the

> recent months gained over 40 pounds.

> Jen goes to chem once a month. They told me she has

> major inflammation of her kidneys and said its not

> lupus because she only has 3 of the 11 markers and

> she

> does not have a positive Ana. They told me she could

> still lose her kidney even if her functions went

> back

> up because of the inflammation. A skin doctor also

> told me Jen has Kimura disease. I was wonder if any

> one else has experience this or knows anyone with

> this.

>

> Thanks for listening to me ramble on

>

> in Lake in the Hills ILLINOIS

>

>

__________________________________________________________

> Boardwalk for $500? In 2007? Ha! Play Monopoly Here

> and Now (it's updated for today's economy) at

> Games.

>

http://get.games./proddesc?gamekey=monopolyherenow

>

>

>

>

>

>

> ---------------------------------

> Take the Internet to Go: Go puts the Internet

> in your pocket: mail, news, photos & more.

________________________________________________________________________________\

____

Looking for a deal? Find great prices on flights and hotels with

FareChase.

http://farechase./

[Guest guest]

Hello

Thanks for writing. The doctors say it is not lupus

yet because the ana is neg. The kidney doctor says she

has crescentic glomerulonephritis which is

inflammation of the kidneys. Jen has alot of blood and

protein in her urine. The skin doctors who examine and

remove a lump say she has kimura diease which is of

unknown orgin and is found mostly in japanese men.

Which we are not. The chemo is suppose to help with

the inflammation. This is the first tme Jen has ever

been on steroids. I am glas she is 5'8 but the weight

has been very difficult to have becasue she fears

going back to school in sept with more on her.

always

mary

--- bound for london <boundforlondon@...> wrote:

> ,

>

> I am so sorry to hear of your daughter's struggles

> with this horrible disease. Don't you just hate it

> when you know there is something there and the docs

> just aren't listening. We did months of that with

> pain and a lump only to end up with emergency

> surgery. What a nightmare when they just don't get

> it that you know that something is wrong.

>

> What a nightmare and kids can be cruel. I remember

> when my daughter did the 40-lb weight shift in a few

> weeks-horrible for them and then to be teased for

> something they can not control. Interesting how they

> won't say it is lupus, what do they say it is then?

> My daughter is also ANA negative but her doc is sure

> she is Lupus and poly, she calls it Rheupus. Guess

> it depends on the doc. So, what is she taking now to

> control all of this? Do you see a nephrologist too?

> I am so sorry to hear of her struggles and wish

> there was more I could do besides my constant

> prayers and pleadings for a cure.

>

> e, mom to " joe " 20 poly + lupus

>

> tim chesney <tec1959@...> wrote:

> It has been a while since I wrote this

> site. My

> daughter Jen and I have been members at least since

> 2003. Jen was DC in 2001 with pauc, then in 2005

> with

> poly, she has always had eye problems. In Feb of

> this

> year Jen developer lumps on her back and hip. I was

> told by my doctor they were zits not to worry.with

> an

> MRI done it showed she had 13 masses growing. The

> lumps began growing faster, with 2 e.r visits and 3

> doctors she finally had two big ones removed and the

> doctor sent to mayo who said it was lupus. She went

> back to school with a fever in April which the

> doctor

> said it was OK and then one week later the lumps

> were

> drained because blood was in them. After that Jen's

> fevers went up and down and the highest 104. I

> finally

> took her to children memorial in Chicago. They told

> me

> Jen was in kidney failure. She was in the hospital 9

> days she had steroid thru iv for 3 days and chemo

> for

> 1. She was release and on April 25 after being off

> of

> school since march 20Th she rejoin her friends at

> school Needless to said who were cruel because

> during

> this time Jen gained and lost weight and then in the

> recent months gained over 40 pounds.

> Jen goes to chem once a month. They told me she has

> major inflammation of her kidneys and said its not

> lupus because she only has 3 of the 11 markers and

> she

> does not have a positive Ana. They told me she could

> still lose her kidney even if her functions went

> back

> up because of the inflammation. A skin doctor also

> told me Jen has Kimura disease. I was wonder if any

> one else has experience this or knows anyone with

> this.

>

> Thanks for listening to me ramble on

>

> in Lake in the Hills ILLINOIS

>

>

__________________________________________________________

> Boardwalk for $500? In 2007? Ha! Play Monopoly Here

> and Now (it's updated for today's economy) at

> Games.

>

http://get.games./proddesc?gamekey=monopolyherenow

>

>

>

>

>

>

> ---------------------------------

> Take the Internet to Go: Go puts the Internet

> in your pocket: mail, news, photos & more.

________________________________________________________________________________\

____

Boardwalk for $500? In 2007? Ha! Play Monopoly Here and Now (it's updated for

today's economy) at Games.

http://get.games./proddesc?gamekey=monopolyherenow

[Guest guest]

,You have probably already read this but I am sending it along in case you have not. A positive ANA does not necessarily mean you do or do not have the disease from what we have been told. There are quite a few people out there with positive ANA who do not have an autoimmune disease and many without one that do. Sound like they still are searching and sadly guessing. Is there another dermatologist or other specialist that you can go to. From what I just read that diagnosis doesn't make sense at all. How frustrating for you and your daughter. Who knows, they could be right but it seems like such a stretch. I guess I have become such a questioner of doctors when they pull rare things out of their diagnosis hat after having multiple family members with health issues. My husband had terribly itchy feet when we got married, he would scratch up a storm. His mom told me that she took him to the dermatologist when he was younger and they gave him some creams and such.

So, off he goes to the derm and they give him all kinds of expensive creams, none of them work at all. He itches like crazy and drives me nuts with it. Fast forward a few years, he donated blood and the blood bank rejects his blood. He goes through tons of testing, fast forward again. Turns out he has a rare but lethal liver disease and his bile salts were so high they would pour out in his sweat and he never takes his shoes off so the sweat sits on his feet and he itches like crazy. We threw out all his creams and they came up with new oral meds and treatments. Now his bile levels are better (and other liver stuff) and he longer itches. So, I guess my only advice is, seek another opinion. Do you have another hospital you can take her too? Or to phone them at least and talk to them about sending her records for another opinion? http://www.lupus.org/education/articles/diagnosis.htmlI'll be out of town for a week with a church girls camp but will be

interested in hearing more when I get back.e, mom to "joe" 20tim chesney <tec1959@...> wrote: Hello Thanks for writing. The doctors say it is not lupus yet because the ana is neg. The kidney doctor says she has crescentic glomerulonephritis which is inflammation of the kidneys. Jen has alot of blood and protein in her urine. The skin doctors who examine and remove a lump say she has kimura diease which is of unknown orgin and is found mostly in japanese men. Which we are not. The

chemo is suppose to help with the inflammation. This is the first tme Jen has ever been on steroids. I am glas she is 5'8 but the weight has been very difficult to have becasue she fears going back to school in sept with more on her. --- bound for london <boundforlondon > wrote: > , > > I am so sorry to hear of your daughter's struggles > with this horrible disease. Don't you just hate it > when you know there is something there and the docs > just aren't listening. We did months of that with > pain and a lump only to end up with emergency > surgery. What a nightmare when they just don't get > it that you know that something is wrong. > > What a nightmare and kids can be cruel. I remember > when my daughter did the 40-lb weight shift in a few > weeks-horrible for them and

then to be teased for > something they can not control. Interesting how they > won't say it is lupus, what do they say it is then? > My daughter is also ANA negative but her doc is sure > she is Lupus and poly, she calls it Rheupus. Guess > it depends on the doc. So, what is she taking now to > control all of this? Do you see a nephrologist too? > I am so sorry to hear of her struggles and wish > there was more I could do besides my constant > prayers and pleadings for a cure. > > e, mom to "joe" 20 poly + lupus > > tim chesney <tec1959 > wrote: > It has been a while since I wrote this > site. My > daughter Jen and I have been members at least since > 2003. Jen was DC in 2001 with pauc, then in 2005 > with > poly, she has always had eye problems. In Feb

of > this > year Jen developer lumps on her back and hip. I was > told by my doctor they were zits not to worry.with > an > MRI done it showed she had 13 masses growing. The > lumps began growing faster, with 2 e.r visits and 3 > doctors she finally had two big ones removed and the > doctor sent to mayo who said it was lupus. She went > back to school with a fever in April which the > doctor > said it was OK and then one week later the lumps > were > drained because blood was in them. After that Jen's > fevers went up and down and the highest 104. I > finally > took her to children memorial in Chicago. They told > me > Jen was in kidney failure. She was in the hospital 9 > days she had steroid thru iv for 3 days and chemo > for > 1. She was release and on April 25 after being off > of > school since march 20Th she

rejoin her friends at > school Needless to said who were cruel because > during > this time Jen gained and lost weight and then in the > recent months gained over 40 pounds. > Jen goes to chem once a month. They told me she has > major inflammation of her kidneys and said its not > lupus because she only has 3 of the 11 markers and > she > does not have a positive Ana. They told me she could > still lose her kidney even if her functions went > back > up because of the inflammation. A skin doctor also > told me Jen has Kimura disease. I was wonder if any > one else has experience this or knows anyone with > this. > > Thanks for listening to me ramble on > > in Lake in the Hills ILLINOIS > > __________________________________________________________ > Boardwalk for $500? In 2007?

Ha! Play Monopoly Here > and Now (it's updated for today's economy) at > Games. > http://get.games./proddesc?gamekey=monopolyherenow > > > > > > > --------------------------------- > Take the Internet to Go: Go puts the Internet > in your pocket: mail, news, photos & more. __________________________________________________________ Looking for a deal? Find great prices on flights and hotels with FareChase. http://farechase./

Moody friends. Drama queens. Your life? Nope! - their life, your story. Play Sims Stories at Games.

[Guest guest]

bound for london <boundforlondon@...> wrote: ,You have probably already read this but I am sending it along in case you have not. A positive ANA does not necessarily mean you do or do not have the disease from what we have been told. There are quite a few people out there with positive ANA who do not have an autoimmune disease and many without one that do. Sound like they still are searching and sadly guessing. Is there another dermatologist or other specialist that you can go to. From what I just read that diagnosis

doesn't make sense at all. How frustrating for you and your daughter. Who knows, they could be right but it seems like such a stretch. I guess I have become such a questioner of doctors when they pull rare things out of their diagnosis hat after having multiple family members with health issues. My husband had terribly itchy feet when we got married, he would scratch up a storm. His mom told me that she took him to the dermatologist when he was younger and they gave him some creams and such. So, off he goes to the derm and they give him all kinds of expensive creams, none of them work at all. He itches like crazy and drives me nuts with it. Fast forward a few years, he donated blood and the blood bank rejects his blood. He goes through tons of testing, fast forward again. Turns out he has a rare but lethal liver disease and his bile salts were so high they would pour out in his sweat and he never takes his shoes off so the sweat sits on his feet and he itches like crazy.

We threw out all his creams and they came up with new oral meds and treatments. Now his bile levels are better (and other liver stuff) and he longer itches. So, I guess my only advice is, seek another opinion. Do you have another hospital you can take her too? Or to phone them at least and talk to them about sending her records for another opinion? http://www.lupus.org/education/articles/diagnosis.htmlI'll be out of town for a week with a church girls camp but will be interested in hearing more when I get back.e, mom to "joe" 20tim chesney <tec1959 > wrote: Hello Thanks for writing. The doctors say it is not lupus yet because the ana is neg. The kidney doctor says she has crescentic glomerulonephritis

which is inflammation of the kidneys. Jen has alot of blood and protein in her urine. The skin doctors who examine and remove a lump say she has kimura diease which is of unknown orgin and is found mostly in japanese men. Which we are not. The chemo is suppose to help with the inflammation. This is the first tme Jen has ever been on steroids. I am glas she is 5'8 but the weight has been very difficult to have becasue she fears going back to school in sept with more on her. --- bound for london <boundforlondon > wrote: > , > > I am so sorry to hear of your daughter's struggles > with this horrible disease. Don't you just hate it > when you know there is something there and the docs > just aren't listening. We did months of that with > pain and a lump only to end up with emergency > surgery. What

a nightmare when they just don't get > it that you know that something is wrong. > > What a nightmare and kids can be cruel. I remember > when my daughter did the 40-lb weight shift in a few > weeks-horrible for them and then to be teased for > something they can not control. Interesting how they > won't say it is lupus, what do they say it is then? > My daughter is also ANA negative but her doc is sure > she is Lupus and poly, she calls it Rheupus. Guess > it depends on the doc. So, what is she taking now to > control all of this? Do you see a nephrologist too? > I am so sorry to hear of her struggles and wish > there was more I could do besides my constant > prayers and pleadings for a cure. > > e, mom to "joe" 20 poly + lupus > > tim chesney <tec1959 > wrote:

> It has been a while since I wrote this > site. My > daughter Jen and I have been members at least since > 2003. Jen was DC in 2001 with pauc, then in 2005 > with > poly, she has always had eye problems. In Feb of > this > year Jen developer lumps on her back and hip. I was > told by my doctor they were zits not to worry.with > an > MRI done it showed she had 13 masses growing. The > lumps began growing faster, with 2 e.r visits and 3 > doctors she finally had two big ones removed and the > doctor sent to mayo who said it was lupus. She went > back to school with a fever in April which the > doctor > said it was OK and then one week later the lumps > were > drained because blood was in them. After that Jen's > fevers went up and down and the highest 104. I > finally > took her to children memorial in Chicago. They

told > me > Jen was in kidney failure. She was in the hospital 9 > days she had steroid thru iv for 3 days and chemo > for > 1. She was release and on April 25 after being off > of > school since march 20Th she rejoin her friends at > school Needless to said who were cruel because > during > this time Jen gained and lost weight and then in the > recent months gained over 40 pounds. > Jen goes to chem once a month. They told me she has > major inflammation of her kidneys and said its not > lupus because she only has 3 of the 11 markers and > she > does not have a positive Ana. They told me she could > still lose her kidney even if her functions went > back > up because of the inflammation. A skin doctor also > told me Jen has Kimura disease. I was wonder if any > one else has experience this or knows anyone with > this.

> > Thanks for listening to me ramble on > > in Lake in the Hills ILLINOIS > > __________________________________________________________ > Boardwalk for $500? In 2007? Ha! Play Monopoly Here > and Now (it's updated for today's economy) at > Games. > http://get.games./proddesc?gamekey=monopolyherenow > > > > > > > --------------------------------- > Take the Internet to Go: Go puts the Internet > in your pocket: mail, news, photos & more. __________________________________________________________ Looking for a deal? Find great prices on flights and hotels with FareChase. http://farechase./ Moody friends. Drama queens. Your life? Nope! - their life, your story. Play Sims Stories at Games.

Need a vacation? Get great deals to amazing places on Travel.

[Guest guest]

Hi, . I remember your posts from the

past. I am sorry Jen is not doing well at this point. I can’t believe she

had 13 masses and the dr told you they were zits at first. Good for you for

persevering to get some answers. My only suggestion would be second/third

opinions. Have you tried any of the drs at University of Chicago

hospitals, like their Comer Children’s hospital? Chris’ rheumys

came from there. Or what about St Jude? They are not just a children’s

cancer hospital, they take care of all sorts of chronic illnesses. Other than

that, I am sorry I have no more suggestions, just remember to feel free to vent

here whenever you need to, whatever route you take. Please keep us up to date

on how things are going, Michele ( 20, spondy)

From: [mailto: ] On Behalf Of tim chesney

Sent: Friday, August 03, 2007 6:04

PM

Subject: need help

It has

been a while since I wrote this site. My

daughter Jen and I have been members at least since

2003. Jen was DC in 2001 with pauc, then in 2005 with

poly, she has always had eye problems. In Feb of this

year Jen developer lumps on her back and hip. I was

told by my doctor they were zits not to worry.with an

MRI done it showed she had 13 masses growing. The

lumps began growing faster, with 2 e.r visits and 3

doctors she finally had two big ones removed and the

doctor sent to mayo who said it was lupus. She went

back to school with a fever in April which the doctor

said it was OK and then one week later the lumps were

drained because blood was in them. After that Jen's

fevers went up and down and the highest 104. I finally

took her to children memorial in Chicago.

They told me

Jen was in kidney failure. She was in the hospital 9

days she had steroid thru iv for 3 days and chemo for

1. She was release and on April 25 after being off of

school since march 20Th she rejoin her friends at

school Needless to said who were cruel because during

this time Jen gained and lost weight and then in the

recent months gained over 40 pounds.

Jen goes to chem once a month. They told me she has

major inflammation of her kidneys and said its not

lupus because she only has 3 of the 11 markers and she

does not have a positive Ana. They told me she could

still lose her kidney even if her functions went back

up because of the inflammation. A skin doctor also

told me Jen has Kimura disease. I was wonder if any

one else has experience this or knows anyone with

this.

Thanks for listening to me ramble on

in Lake in the Hills ILLINOIS

__________________________________________________________

Boardwalk for $500? In 2007? Ha! Play Monopoly Here and Now (it's updated for

today's economy) at Games.

http://get.games./proddesc?gamekey=monopolyherenow