Re: Digest Number 1545

April 8, 2001

Thanks for the reply Jerry. Unfortunately, I didn't get the attachments. If

you get a moment, please send them direct to me. I would like to continue

this discussion. As a group (and I include the PBCers and the PSCers here),

we need to be more aggressive in pushing research in our direction. I think

the PBCers are leading the way and can only hope their directed research will

help us all. Certainly, Dr. Brodskys' work and the NIH study offers hope for

us all.

My doc at Mayo says that AIH does not get the directed research because their

is medication to suppress the disease (pred, imuran, etc). PBC and PSC are

have less effective treatments but the number of patients is very small

relative to other diseases (Parkinsons, cancer, etc). He says a breakthrough

in our disease treatment will most likely come as a spinoff of treatment of

another disease - thus, Dr. Brodsky's work.

Still, there are a small number of AIH and PBC/PSC patients that have a very

active disease that meds do not help. These folks need at least one liver

transplaant. At the PBC conference last year, I met a very brave young lady

who was awaiting her second liver transplant because her PBC was so

aggressive. For her, this breakthrough research would be worth a try.

Just another push to get AIHers to attend the PBC conference in Las Vegas. If

you want to see some great, informed folks with a directive, positive

attitude, ATTEND the conference! We'll have a segment on AIH and the overall

conference is exceptional. If you don't have the information on the

conference, e-mail me and I'll send it back to you.

God bless,

Rick, AIH

In a message dated 4/8/01 2:18:02 AM Pacific Daylight Time,

writes:

<< Date: Sat, 7 Apr 2001 08:33:20 -0400 (EDT)

From: gefox@...

Subject: DR. Brodsky

Barbara, Rick, et al.... there are many private companies involved in

this research also.... it`s been going on for awhile.....I think it`s

really great news!

I posted on this subject a couple of times last year as did Andi and

Joanne and perhaps some others....

I was disappointed in the response I got but I know not everyone reads

every post.

The IMPORTANT aspect of this research is.. it could lead to eliminating

the need for immunosupressants post-transplant,

and quite possibly transplant itself...

I`m going to resend one of the posts I sent and another from Andi that

were in the archives.

Jerry

>>

May 6, 2002

Dawn,

also had the sleep study done last year and after being scoped they

decided his Epiglotis was too large and could be obstructing his airway

causing the obstructive sleep apnea. Had the surgery..... Didn't do a

thing......Had the study redone and still has obstructive sleep apnea... What

a waste of time and poor going through another surgery. Have had

tonsils removed, adenoids, total reconstruction of his trachea with his rib

cartledge and no change in the study....Doesn't snore as loud now....

(mom to 15 DS/ASD

May 6, 2002

Dawn,

O2's would also drop below 85 and alarms would ring and go back up over 90

when startled to take a breath.

(mom to 15 DS/ASD)

May 7, 2002

Thank you for responding! it is frustrating isnt it? I am so sorry he

had to go through so much!! They say s is mainly central sleep apnea,

brain says stop breathing, so I am off to the Dr. again so he can tell me what

to do!Do they think s is only obstuctive sleep apnea? Take care, Dawn

Re: Digest Number 1545

Dawn,

also had the sleep study done last year and after being scoped they

decided his Epiglotis was too large and could be obstructing his airway

causing the obstructive sleep apnea. Had the surgery..... Didn't do a

thing......Had the study redone and still has obstructive sleep apnea... What

a waste of time and poor going through another surgery. Have had

tonsils removed, adenoids, total reconstruction of his trachea with his rib

cartledge and no change in the study....Doesn't snore as loud now....

(mom to 15 DS/ASD

May 9, 2003

Cardio Stinks Less,

I am very new at this, not giving advice, having surmountable trouble

getting organized and learning the lifting exercises, but just wanted to say

that as much as I like lifting as a rule, I LOVE cardio simply because I use

some jogging in place and more to supplement my awesome dance routines, mostly

to Moby, but Ethel Merman would be proud. I put on show music and pretend I'm a

Rockette moved on to Broadway...it is such a fun fantasy and 20 minutes flies

by. Parisbean

May 9, 2003

Jill and Flaxseed Oil,

Fresh flaxeed should taste just like Alfalfa hay smells...or tastes, too,

maybe. I LOVE it, but it might be a sweet memory from farm days! Good

luck...is horrible choking something down with your nose plugged, I used to do

that with yeast. GOD AWFUL. Parisbean

May 9, 2003

Glutamine,

What's the dosage? Thanks. Parisbean

October 4, 2004

Carolyn,

~tight squeeze~ I think many of our kiddos received their autistic traits

from us, their parents... I wasn't a " normal " child either, which I guess

has made me a more understanding parent (I don't want Tyler to go through

what I did).

Man o Man I wish there was more they could do for Marty and his seizures...

I know how hard they are to live with and it can really wear a

caretaker/parent out with the worry... especially if they can't talk or

communicate effectively!!! I have been taking care of a 2-year-old with

special needs who has frequent seizures, and I have to say that the worry

over that child has aged me more this past year than taking care of special

needs kiddos over the previous 5-year period... It is tough, always

wondering if you are doing enough, if their meds are balanced just right, if

there was some way to break through after a seizure... ~tight hugs~ I am so

glad that your grandkids understand and that was willing to go talk to

him!!!

I am sorry to hear about you getting kicked out of a group! It is hard for

me to imagine someone kicking out such a kind and gentle soul... What

happened?? Is there a psyco lady there or did you have a personality

conflict? Some groups are just more friendly by nature... I think it has a

lot to do with the moderator and how it was set up. We sure are lucky to

have Sharon for our list!!! (hoping she is listening) Anyway, I am glad you

are still in here!!!

~hugs~

Rabecca

(Mt. St. Helens Flood Survivor)

October 4, 2004

Hi Rabecca,

Thank you for the encouragement and support about the seizure problem, and also getting kicked out of a group lately. Yes, I would say that seizures are about the worst thing I have ever had to deal with in my life, and that has been a LOT of seizures over the years. They are just really weird. With my son I never know if he is going to get through the one he is in, you just never know. In some ways it is better though now that my other three kids don't have to deal with them much anymore. I think they all must have PTS syndrome. Poor kids, but what could I do to protect them.

With us there is a particular sound that Marty makes in his throat when he is going into a seizure, sort of a groan and we all have jumped out of our seats when we hear that groan, sometimes it is in music and you will just be sitting there peacefully watching a movie or something and there is that groan in the music, and you jump out of your seat! We once had it happen at the movie theatre and Marty wasn't even there, and we all jumped.

It is a fight or flight thing, the adrenalin rush we always needed in order to run to his rescue, and then make sure he is in a position where he can breath, and after the seizure while he is flailing around. Now that he cannot even get up and run around anymore it is more contained, but when he used to go to school on the bus, I really wondered if he would come home at the end of the day.

Yes, I am quite sad about my other group. The moderator was a good friend of mine and we had written back and forth for several years. Things got complicated when she recently learned she had bi-polar disease, and had to go on medication for it. But now I have heard that her doctor doesn't think it is bi-polar at all. I have tried to be very stable and supportive of her, and her vision for a support group, as several times she has had meltdowns towards me, but this time she is convinced I am her problem, so I am gone.

Guess it is for the best. Well I have to hurry now and go and get my granddaughter to take her to school. I do it as a favor for her mom, who has a new baby at home, and would have to take him and her other child out in the cold just to take her to school. I am kind of wondering what is going on over there, as my son-in-law came home from his job about 100 miles away to go on road crew. That is when you work instead of sit in jail. Well when he got here on Friday night he was so drunk, he slept in with a hangover for two days. So I don't know if they came and got him or not, guess I will find out.

It is like a soap opera around here! haha

Talk to you all soon,

Love,

Carolyn

RE: Digest Number 1545

Carolyn,~tight squeeze~ I think many of our kiddos received their autistic traitsfrom us, their parents... I wasn't a "normal" child either, which I guesshas made me a more understanding parent (I don't want Tyler to go throughwhat I did).Man o Man I wish there was more they could do for Marty and his seizures...I know how hard they are to live with and it can really wear acaretaker/parent out with the worry... especially if they can't talk orcommunicate effectively!!! I have been taking care of a 2-year-old withspecial needs who has frequent seizures, and I have to say that the worryover that child has aged me more this past year than taking care of specialneeds kiddos over the previous 5-year period... It is tough, alwayswondering if you are doing enough, if their meds are balanced just right, ifthere was some way to break through after a seizure... ~tight hugs~ I am soglad that your grandkids understand and that was willing to go talk tohim!!!I am sorry to hear about you getting kicked out of a group! It is hard forme to imagine someone kicking out such a kind and gentle soul... Whathappened?? Is there a psyco lady there or did you have a personalityconflict? Some groups are just more friendly by nature... I think it has alot to do with the moderator and how it was set up. We sure are lucky tohave Sharon for our list!!! (hoping she is listening) Anyway, I am glad youare still in here!!!~hugs~Rabecca(Mt. St. Helens Flood Survivor)

April 14, 2005

,

I've just done a quick search and come up with the following link for

a conversion course:

http://www.idess.com/bosietbe.htm

You may want to look around a bit more for a course closer to your location.

I hope this helps,

Shaun

BOSIET Training

Hi all,

I really need some help with this.

I arrived from Australia with a TBOSIET card under my belt.

The training organisation says that to work in the UK I need to do a

cross grading from TBOSIET to BOSIET. So I called COGENT to ask for

advice and was told this was wrong and I would need to do the full

BOSIET course again. So who is right and who is wrong?

Can anyone give me any information about this? Or provide me contact

numbers for training organisations?

I am at a loss as I can't find too many organisations on the internet

etc and I don't want to pay the £600 (AUD$1500) BOSIET course fee if I

can do a cross grading for less money as the conversion rate really

sucks at the moment.

Thanks for all your help

February 6, 2007

Hi, I'm new - I had surgery on November 2nd and 3rd. I’m 31, and live in

Canada. I am one of those who developed flatback from hardware other than

Harrington rods. I had CD rods and fusion from T4 to L4 when I was 13. Pre-op,

I had severe scoliosis that was progressing rapidly with severe rotation – there

was only six months from diagnosis to surgery, at which time my largest curve

was in the 70 degree range. I have had never had a perfectly pain free back –

however, two years ago I started having some new problems. I’ve always had

irritable bowel syndrome – but I started to have increasing urgency. I also had

several kidney infections and bladder infections. These coincided with

increasing severe low back pain. I noticed that my body tended to lean forward.

I started to get severe upper back and neck pain too, which my physiotherapist

related to my leaning-forward stance. Anytime I sat for long periods, such as

car trips, I would end up with bad back pain, and get sick.

By this point I couldn’t do anything upright – when I sat I leaned forward and

to the right, when I stood I leaned against a wall or doorjamb, and when I

walked I was in constant pain – when I went grocery shopping I leaned all the

way forward on the shopping cart. I had my surgery on November 2nd, - they

ended up doing more than originally planned – they decompressed the discs, fused

me to L5, added two more rods for lumbar stabilization with seven pedicle

screws, they replaced on of my vertebrae with a tantalum disc, and inserted a

cage system at the L4 level. My specialists were amazing, and visited me daily

in the hospital. I’ve been going to physiotherapy since shortly after I came

home – lying down all day was literally becoming a pain in the neck for my

compensatory cervical curve! My upper back is achy because I’ve been so rigid,

and my hip flexor muscles have been really tight from leaning over for so long.

I know I will never be totally pain free, but I feel better now, even aside from

the post-op aches and stiffness, than I have in a long time. The specialists

have said that I may likely need more surgery in fifteen years or so because of

the L5 region or the thoracic vertebrae above my original fusion. This isn’t

overly surprising, but a lot can happen in fifteen years. In the mean time, I

want to do what I can to take care of myself try and make my back the best it

can be. It gets hard sometimes, but that’s why I’m so glad that there are

supportive online groups like this one to turn to.

Cena

P.S. - hip flexors are the muscles that run vertically along the crease where

your thighs start and are responsible for raising and lowering your leg when you

are laying down or marching. See

http://www.fitstep.com/Advanced/Anatomy/Graphics/hip-flexors-anatomy.jpg. With

flatback they get shortened because of the leaning forward stance.

_________________________________________________________________

Live Search: Better results, fast

http://get.live.com/search/overview

February 6, 2007

When I brought up that link, CM, it said it was an error.

Carol V.

>

> Hi, I'm new - I had surgery on November 2nd and 3rd. I'm 31, and

live in Canada. I am one of those who developed flatback from

hardware other than Harrington rods. I had CD rods and fusion from T4

to L4 when I was 13. Pre-op, I had severe scoliosis that was

progressing rapidly with severe rotation – there was only six months

from diagnosis to surgery, at which time my largest curve was in the

70 degree range. I have had never had a perfectly pain free back –

however, two years ago I started having some new problems. I've

always had irritable bowel syndrome – but I started to have

increasing urgency. I also had several kidney infections and bladder

infections. These coincided with increasing severe low back pain. I

noticed that my body tended to lean forward. I started to get severe

upper back and neck pain too, which my physiotherapist related to my

leaning-forward stance. Anytime I sat for long periods, such as car

trips, I would end up with bad back pain, and get sick.

> By this point I couldn't do anything upright – when I sat I leaned

forward and to the right, when I stood I leaned against a wall or

doorjamb, and when I walked I was in constant pain – when I went

grocery shopping I leaned all the way forward on the shopping

cart. I had my surgery on November 2nd, - they ended up doing more

than originally planned – they decompressed the discs, fused me to

L5, added two more rods for lumbar stabilization with seven pedicle

screws, they replaced on of my vertebrae with a tantalum disc, and

inserted a cage system at the L4 level. My specialists were amazing,

and visited me daily in the hospital. I've been going to

physiotherapy since shortly after I came home – lying down all day

was literally becoming a pain in the neck for my compensatory

cervical curve! My upper back is achy because I've been so rigid,

and my hip flexor muscles have been really tight from leaning over

for so long. I know I will never be totally pain free, but I feel

better now, even aside from the post-op aches and stiffness, than I

have in a long time. The specialists have said that I may likely

need more surgery in fifteen years or so because of the L5 region or

the thoracic vertebrae above my original fusion. This isn't overly

surprising, but a lot can happen in fifteen years. In the mean time,

I want to do what I can to take care of myself try and make my back

the best it can be. It gets hard sometimes, but that's why I'm so

glad that there are supportive online groups like this one to turn

to.

> Cena

>

> P.S. - hip flexors are the muscles that run vertically along the

crease where your thighs start and are responsible for raising and

lowering your leg when you are laying down or marching. See

http://www.fitstep.com/Advanced/Anatomy/Graphics/hip-flexors-

anatomy.jpg. With flatback they get shortened because of the leaning

forward stance.

>

> _________________________________________________________________

> Live Search: Better results, fast

> http://get.live.com/search/overview

>

February 9, 2007

Hi Cena,

Thanks for sharing your information, and that's great you are pleased

with the results of your surgeries. I'm interested to know more

about what your physiotherapy involves, and if being more upright has

helped your neck pain much.

I couldn't get the site to work that you posted, but here's another

one that might help those who were wondering about what hip flexors are.

http://www.exrx.net/Articulations/Hip.html#anchor845056

I'm a bit obsessed about what flatback is doing to my hip flexors,

since when I had my hip replacement surgery on the right hip a few

years back, my iliopsoas was so shortened and tight that my doc had

to do extra cutting of it that is not normally required.

Best wishes for you to NOT need any more surgery for a long time!

loriann