Support needed

October 27, 2003

I just took my 9 yr. old daughter to see Dr. Braverman. I would happy to

speak with you about it. Too much to write. Call me anytime (562) 431-4050.

Sandy, 's mom

[ ] Support Needed

> Hi everyone !

> I am feeling in need of extra support today. It has been over a year since

I found this group and started working to help my 8 year old with atypical

absence seizures and still no success. I was foolish enough to let a neuro

talk me into trying lamictal last week and that was a huge mistake as his

temper became explosive by the third dosage. I am concerned especially as

others on this group have mentioned people losing custody of their children

for not doing what the neurologist says to do. Is this still happening in

this day and age ? I have already stopped the lamictal and the neuro's at AI

Dupont Children's Hospital all seem to think I am flaky, they do not even

believe the stories of side effects I have told from Zarotin and

Depakote..and now Lamictal.

>

> Is anyone aware of testing to do for food allergies. I am certain there is

a chemical link to these seizures. He had been seizure free for several days

the last time he was on antibiotics. He is on the Pfeiffer Treatment Center

program and doing better this has not helped his seizures - no one every

said it would but yet I had my own hopes. Homeopathy has been a bust as

well. I know Donna s could help him but he is just not emotional

mature enough to do the work he would be required to be successful at

s-Rietter. We live in land just outside of Delaware and

Philadelphia. I have been in touch with Braverman's office. Has anyone

been helped by him on this list ? I have spent so much money on promises

that have not panned out.

>

> Anyone ?? Ideas ?

>

> M

>

October 27, 2003

>

Hi ,

I will leave the what to do about the seizures to the many

knowledgeable ones around here ( I am a student!), but I wanted to

comment on the other situation; about not doing what the doctors

tell you.

I know of doctors forcing patients into treatment against parents

will in certain situations, but it usually has to be life threatening

OR it concerns some illness they want to research and need your child

as a guinea pig. In my friends family several children have a rare

disorder and the treatment they offered to save the life of the child

rendered the child retarded. The hospital felt that was the best

solution and looked at the parents desire to try alternative

therapies as killing their child. They nearly lost their child and

the rest of the family who has affected members will not seek

conventional medical treatment. The child is alive and well several

years later ( rhey managed to get away from the hospital somehow.)and

the other family members with it are doing ok. But what if they

weren't doing ok and had to face death or try treatment?

I think the hospitals/doctors would choose their battles carefully.

Unless your child is horribly endangered I cannot see most courts

taking away your rights to try another treatment. Have you seen

First Do No Harm? The mother faced this situation, but the child was

in critical care.

I am glad you mentioned how the doctors feel about your assessments

of your child being flaky and that they don't beleive you. This is

exactly how I feel 's doctor views me. A religious nut to boot

( I rejected certain psychological testing on the basis of my faith.)

I can't begin to tell you how weird I could sense this man thought I

was. I think he thought I was exaggerating 's case. The

worst thing about this was he ws the 4th doctor to do this!! So last

Spring, after had a 23 hr eeg, I was so badly looking for

validation - and didn't get it. He proclaimed his eeg normal, the

drug a success, and told me had other " issues " like

psychological problems or PPD or something like that. My mother got

sick suddenly and began to die and I was not able to take

back to the dr for 5 months. My husband and I didn't even know if we

wanted to go back - we were so upset. We wanted to go to someone

else, but the big centers who do so aggressive diagnostic tests are

surgery oriented and we weren't ready for that at all. We needed

diagnosis. Anyhow, we decided to go back and have it out with him in

a very polite manner, of course. Guess what? He told us he had

misread the eeg report and then gave a diagnosis ( pretty much. He

called it something which is either Landau Kleffner or Lennox Gastaut

_ I am not sure, but both seem very hopeless to doctors in that the

children are profoundly learning disabled.). We went 5 months

hurting and dreading to deal with this man and his idea of us - and

he was wrong. I doubt that what happened to us is rare. I know it

isn't. Eeg's are just shots in the dark and so much rides upon these

tests. I read all day long on sites of epilepsy centers that the eeg

should NOT carry all the weight in a diagnosis, but in practice they

often do. All these sites dicuss the importance of listening what

the parents or the advocates report, but again, this is often largely

ignored.

Well, Mike, don't feel alone and I know some here will give you

fabulous ideas. Hang in there, I will say a prayer for you and your

son.

Joanie

October 27, 2003

Thank you and Joanie...I was feeling rather defeated this afternoon but I

am ready to pick up the pieces and continue once more. Thanks for the helping

words.

October 28, 2003

HI MIKE,MY NAME IS MARK AND I TAKE SUNRIDER CHINESE HERBAL FOODS.SINCE I'VE BEEN

ON THE STARTING IN JULY I HAVEN'T HAD ANY SEIZURES.EARLIER THIS YEAR I HAD 605

SEIZURES AND THIS IS WORKING VERY WELL FOR ME,IT FLUSHES OUT TOXIN FROM YOUR

BODY CLEANSES IT INSIDE AND OUTSIDE AND IF YOU LIKE E-MAIL ME YOUR HOME ADDRESS

I'LL SEND YOU A CD THAT TELLS YOU ALL ABOUT THE PRODUCTS I LIVE IN HOUSTON TEXAS

AND I'M JUST TRYING TO HELP AS MANY PEOPLE AS POSSIBLE I TRY TO E ON THE LIST

ABOUT SUNRIDER SINCERELY,MARK HOGUE

Mike Mchugh <mcpitza@...> wrote:Hi everyone !

I am feeling in need of extra support today. It has been over a year since I

found this group and started working to help my 8 year old with atypical absence

seizures and still no success. I was foolish enough to let a neuro talk me into

trying lamictal last week and that was a huge mistake as his temper became

explosive by the third dosage. I am concerned especially as others on this group

have mentioned people losing custody of their children for not doing what the

neurologist says to do. Is this still happening in this day and age ? I have

already stopped the lamictal and the neuro's at AI Dupont Children's Hospital

all seem to think I am flaky, they do not even believe the stories of side

effects I have told from Zarotin and Depakote..and now Lamictal.

Is anyone aware of testing to do for food allergies. I am certain there is a

chemical link to these seizures. He had been seizure free for several days the

last time he was on antibiotics. He is on the Pfeiffer Treatment Center program

and doing better this has not helped his seizures - no one every said it would

but yet I had my own hopes. Homeopathy has been a bust as well. I know Donna

s could help him but he is just not emotional mature enough to do the work

he would be required to be successful at s-Rietter. We live in land

just outside of Delaware and Philadelphia. I have been in touch with

Braverman's office. Has anyone been helped by him on this list ? I have spent so

much money on promises that have not panned out.

Anyone ?? Ideas ?

M

October 28, 2003

Does Sunrider have a website? I'd like to read more about it before I order

a CD.

In a message dated 10/28/03 10:02:26 AM Eastern Standard Time,

markhogue2002@... writes:

> HI MIKE,MY NAME IS MARK AND I TAKE SUNRIDER CHINESE HERBAL FOODS.SINCE I'VE

> BEEN ON THE STARTING IN JULY I HAVEN'T HAD ANY SEIZURES.EARLIER THIS YEAR I

> HAD 605 SEIZURES AND THIS IS WORKING VERY WELL FOR ME,IT FLUSHES OUT TOXIN

> FROM YOUR BODY CLEANSES IT INSIDE AND OUTSIDE AND IF YOU LIKE E-MAIL ME YOUR

> HOME ADDRESS I'LL SEND YOU A CD THAT TELLS YOU ALL ABOUT THE PRODUCTS I LIVE

> IN HOUSTON TEXAS AND I'M JUST TRYING TO HELP AS MANY PEOPLE AS POSSIBLE I TRY

> TO E ON THE LIST ABOUT SUNRIDER SINCERELY,MARK HOGUE

>

October 29, 2003

yes, its www.sunrider.com

JBS8198@... wrote:Does Sunrider have a website? I'd like to read more

about it before I order

a CD.

In a message dated 10/28/03 10:02:26 AM Eastern Standard Time,

markhogue2002@... writes:

> HI MIKE,MY NAME IS MARK AND I TAKE SUNRIDER CHINESE HERBAL FOODS.SINCE I'VE

> BEEN ON THE STARTING IN JULY I HAVEN'T HAD ANY SEIZURES.EARLIER THIS YEAR I

> HAD 605 SEIZURES AND THIS IS WORKING VERY WELL FOR ME,IT FLUSHES OUT TOXIN

> FROM YOUR BODY CLEANSES IT INSIDE AND OUTSIDE AND IF YOU LIKE E-MAIL ME YOUR

> HOME ADDRESS I'LL SEND YOU A CD THAT TELLS YOU ALL ABOUT THE PRODUCTS I LIVE

> IN HOUSTON TEXAS AND I'M JUST TRYING TO HELP AS MANY PEOPLE AS POSSIBLE I TRY

> TO E ON THE LIST ABOUT SUNRIDER SINCERELY,MARK HOGUE

>

October 30, 2003

Mark,

I visited the Sunrider site and I'm afraid that their products are just

too expensive for my budget. I will look at the CD you sent me, but I

won't be able to buy anything from there. Thanks anyway! God Bless!

Grace

On Wed, 29 Oct 2003 06:48:25 -0800 (PST) mark hogue

<markhogue2002@...> writes:

> yes, its www.sunrider.com

>

> JBS8198@... wrote:Does Sunrider have a website? I'd like to

> read more about it before I order

> a CD.

>

> In a message dated 10/28/03 10:02:26 AM Eastern Standard Time,

> markhogue2002@... writes:

>

> > HI MIKE,MY NAME IS MARK AND I TAKE SUNRIDER CHINESE HERBAL

> FOODS.SINCE I'VE

> > BEEN ON THE STARTING IN JULY I HAVEN'T HAD ANY SEIZURES.EARLIER

> THIS YEAR I

> > HAD 605 SEIZURES AND THIS IS WORKING VERY WELL FOR ME,IT FLUSHES

> OUT TOXIN

> > FROM YOUR BODY CLEANSES IT INSIDE AND OUTSIDE AND IF YOU LIKE

> E-MAIL ME YOUR

> > HOME ADDRESS I'LL SEND YOU A CD THAT TELLS YOU ALL ABOUT THE

> PRODUCTS I LIVE

> > IN HOUSTON TEXAS AND I'M JUST TRYING TO HELP AS MANY PEOPLE AS

> POSSIBLE I TRY

> > TO E ON THE LIST ABOUT SUNRIDER SINCERELY,MARK HOGUE

> >

>

May 29, 2008

Hope all goes well -- where are you having it done? I will keep you in lots of

good thoughts:

Ann Christmann <fetchinn@...>

[ ] Support needed

Hi guys,

I'm getting ready to have an SI joint fusion on Friday at 0950. I am scared to

death.

May 29, 2008

I am one of those lucky (ha!) 2% of the Caucasian population that do not

react or have very little reaction to opioid medications. In other words

morphine and codeine and their derivatives simply do not do much if anything

for me or to me. I have had several major operations: herniated disk and

5(?) level lumbar laminectomy in 2001; both knees totally replaced in 2005;

gall bladder in 1995. I have had several root canals and a lot of bridge

work done on my teeth without anesthesia or Novocain, lidocaine, etc., i.e.,

cold turkey. None of the local anesthetics work very well either. I do

fine under a general anesthesia and wake up quickly and without any

grogginess.

Have a serious talk with your anesthesiologist (medical doctor who

specializes in anesthesia) or nurse anesthetist (RN with special training)

before surgery. I am sorry that your doctor seems to be trying to scare you

to death.

After my various surgeries, I did my rehab with no problems but it is hard

work. I was a star patient. I had fewer problems than the most of the

other patients. I don't know if it was because I was more determined or had

to prove that an older fat lady could do it or what. After my back surgery

I was up and almost running about 45 minutes after surgery - I really had to

use the restroom. After my knee surgery I was walking (certainly not

quickly) determinedly while some of the others were still moaning and

groaning (I don't think those 2 did well overall - not enough guts). I

took plenty of anti-inflammatories instead of pain meds and that generally

works for me. Do as much other exercise as possible before surgery to keep

all your muscles and tendons in shape to keep you in good condition.

Since you are taking and are tolerant of narcotics, try adding the

anti-inflammatories. Try adding fentanyl - a very powerful opioid. Much

more powerful than morphine. But don't stay on it, harder to kick than

morphine.

Drifty Diane

In toasty North Texas

_____

From:

[mailto: ] On Behalf Of LARRYANDRAE FARRELL

Sent: Wednesday, May 28, 2008 5:20 PM

Subject: [ ] Support needed

Hi guys,

I'm getting ready to have an SI joint fusion on Friday at 0950. I am scared

to death. I am only the 2nd one they've done with this technique but they

use the same technique everywhere else in the spine (lumbar, cervical, etc)

but there are very few people with sacroilitis bad enough to warrant the

surgery and I am one. So I'll be their guinea pig. The reason I need

support: the neurosurgeon is very against the use of narcotics to treat

back and joint pain. He doesn't care that I tried EVERYTHING first that was

more conservative with no relief-ablations, injections, PT, etc. It was the

only way I could keep going. Anyway, he gave me this big speech on how

horrible I was going to do post-op due to the pain since I am tolerant to

the narcotics. Now he has me scared to death. Have any of you had surgery

(any surgery) while tolerant to narcotics? How was the pain?

Rae

May 29, 2008

Fentanyl is one of THE most powerful opiads. Generally reserved for people with

end-stage cancer. You're very correct that it should be used rarely and

sparingly.

Joanna Hoelscher

May 30, 2008

It took me a long time to get to my " cocktails " that really work. When I woke up

w/o any meds whatsoever for several days, all I had left was mind over matter,

meditation, etc. I was in excruciating pain and could barely move at the time.

Little bit different situation than yours. You have time to prep b4 surgery for

what shape you'll be in when you wake up. Instead of expecting to come out with

great, wonderful feelings of brand new, no pain, he's letting you know up front

not to expect that. If you turn it around, it's kind of " nice " prep -- your

expectations of " pain free " will be so incredibly low that everything " good " you

feel when you wake up is going to be really great and therefor really help you.

Whereas, if you're expecting to wake up pain free, miracle cure, and instead

wake up with pain, the pain will actually feel 10x worse. Does this make any

sense??

I also wanted to mention that some of the comments to try fentanyl (generic) or

duragesic patches, etc. If they do not do their job, do not be afraid to talk to

you doctor about it. We discovered that I tend to metabolize the med faster than

most, so Day 1 would be the beginning of relief and a dawning of hope, but no

" complete " manageable pain relief until day2. Then, day3 was a downhill slide

that just got steeper and steeper on a runaway patch!! I was simply metabolizing

them too fast. My optimum is 2 days!. It stops the roller coaster and levels me

out quite nicely. Now I also use lidocaine patches on some of the trigger

spots. It really addresses the right spots that way. I still use tramadol/Ultram

for breakthrough pain, but with the lidocain patches, I use it only for more

generalized breakthrough pain.

C Moralez <cmoralez_ak@...>

May 30, 2008

Here's hoping that your surgery goes smoothly and that you recuperate

quickly.

That said, when I had my hip replacement in 2006, the first orthopedic

surgeon I consulted agreed with my rheumatologist that I did need the

surgery, but told me that he would not do it because: a) I was too

young (49 at the time), and I was too overweight and he felt the

surgery would be " too complicated " because of that. I then consulted a

different orthopedic surgeon, who said, yes I was young, and yes I was

overweight, but I seemed very motivated and he felt I would do well in

spite of all the risk factors.

I have to tell you that I was in SO MUCH PAIN before the surgery, that

when I awoke in the recovery room immediately post-op, the first words

out of my mouth were, " Gosh, this feels so much better! " Yes, I did

experience some post-op discomfort, but it was nothing I couldn't

handle, particularly since I had experienced so much pain

pre-operatively. The first 24 hours post-op I had something called a PCA

(an epidural pain medication delivery system; they set the machine to

deliver a small amount of pain medicine continuously to you, and every

so many minutes apart you may press a button to give yourself an extra

dose of medicine if needed-for example, I would press mine prior to the

nurses helping me change position in the bed, or prior to deep

breathing/coughing exercises. This sort of pain delivery system is

EXCELLENT for relieving post-op discomfort and I heartily recommend you

ask your anesthesiologist for it.) The day after surgery, they pulled

the PCA, and started me on oral Dilaudid twice daily, with Norco

supplementation every 4-6 hours in between. The oral Dilaudid worked

very effectively also; when the nurses would come in and offer the

Norco, I would refuse it, because I felt just fine of the Dilaudid

alone. The only time I accepted the Norco was prior to physical therapy.

I was discharged home on my third post-op day, by which time I was

already up and walking about with crutches. I continued my rehab

outpatient, and by my tenth post-op day was walking unaided, and

completely off all pain meds except for Naproxen. By day 28 I was back

at work full time.

Hope this tale reassures you. Definitely consult with the

anesthesiologist pre-operatively and let him know you are concerned

about pain management post-op. Good luck!

July 31, 2009

>

> Hi,

>

> Since I started to incorporate parts of this diet, I realise that I'm getting

sick off and on. Sometimes my sinuses flare up and other times I'm good. The

thing that has me puzzled is that before I started any part of the diet, I

didn't get sick, if I did it was like once a year. The only issue I had was mild

vaginal yeast infections. Now I'm getting sick about every 3 -4 weeks and I

always have alot of mucus in my nose. The left nostril is blocked most of the

time.

>

> My family members aren't on the diet and don't eat as healthy as me. My

father, in particular, consumes alot of flour based products on a daily basis

and he hardly gets sick.

>

> My family also told me that I always look tired and my eyes aren't as bright

(have this tired appearance). I also feel very fatigue most of the time. I would

like to improve my health via this diet but it's not very encouraging when

people around me seem so healthy and aren't eating as healthy as I am.

+++Hi . You been a member of this group since 2007 so you should

understand why you are getting such symptoms, which are caused by die-off,

healing, and detoxifying.

I assume you would have read How to Successfully Overcome Candida, and

particularly this section on The healing crisis, " die-off " symptoms, handling

symptoms & other tips:

http://www.healingnaturallybybee.com/articles/intro2.php#s40

Bee

August 16, 2009

Marie,

It has been awhile, glad to hear your doing ok. I have terrible pain in my

cervical spine, I have some disc problems. I take flexeril, and it helps. A

muscle relaxer is about the only thing that stops my pain.

Is your doctor checking your feet and hands? Is it time for x-rays? You really

need to talk to your rheumy, and see if it's time to change meds. I have a lot

of deformity too, it's scary. With biologic meds and everything else we take,

we shouldn't have it, but we do.

Take care, and glad to see you post,

Tawny

>

> Hi friends its been awhile since I last posted but I have been working 2 jobs

to try and get ahead. Im on Humria methx and I seem to be doing ok. My feet are

the worst with toes getting deformed and nodulas every where. My hands seem to

be starting too, but what concerns me is my neck is having a great deal of

stiffness ands its hard to turn my head to the right has anybody else gone

through this if so what was done.It seems i have been in more pain in the last

few weeks Im thinking I might need to change meds or add more. What do you guys

think. Have a great day and I hope everybody is doing good . God bless. Marie

>

August 16, 2009

Hi Marie: Glad to see you posting again. Whew, 2 jobs!!! You are

amazing to be able to funtion like that.

I don't have neck problems, but like you, my feet and ankles were hit

the hardest with RA. I was diagnosed with RA 6 years ago, when I was

63. My Rheumy treated it very aggressively, so far, I don't have any

deformaties anywhere. I do have a large painful nodule on my right foot

arch. When in a flare, that nodule is extremely painful, and I can

hardly walk with it.

I hope you get some meds. for your neck pain. I have one of those pads

that you heat up in the micro-wave, that you can place anywhere you

hurt. They are so soothing. Have you ever tried it?

Wishing you pain free days ahead.

Hugs,

Barbara

>

> Hi friends its been awhile since I last posted but I have been working

2 jobs to try and get ahead. Im on Humria methx and I seem to be doing

ok. My feet are the worst with toes getting deformed and nodulas every

where. My hands seem to be starting too, but what concerns me is my neck

is having a great deal of stiffness ands its hard to turn my head to the

right has anybody else gone through this if so what was done.It seems i

have been in more pain in the last few weeks Im thinking I might need to

change meds or add more. What do you guys think. Have a great day and I

hope everybody is doing good . God bless. Marie

>

August 16, 2009

Hi Marie - good to hear from you again. Sorry you are in such pain. Sounds like

you either need to get with your Rheumy or an Orthopaedic about your neck. RA

seems to enjoy messing with our cervical spine the most and that makes it most

uncomfortable. They should possibly do xrays of your neck and perhaps some PT is

all you need.

Best of luck to you. Keep us posted.....Doreen

Hi friends its been awhile since I last posted but I have been working 2 jobs

to try and get ahead. Im on Humria methx and I seem to be doing ok. My feet are

the worst with toes getting deformed and nodulas every where. My hands seem to

be starting too, but what concerns me is my neck is having a great deal of

stiffness ands its hard to turn my head to the right has anybody else gone

through this if so what was done.It seems i have been in more pain in the last

few weeks Im thinking I might need to change meds or add more. What do you guys

think. Have a great day and I hope everybody is doing good . God bless. Marie

September 7, 2010

Thank you everyone for your good wishes. Our support group is like a big

brother holding your hand on your first day of school. I didn't fare so well, I

ran away and back home to my mother. LOL You have all become a substantial

part of my life, sitting at my computer reading your posts, researching and

writing. Where would we be without our computers, it would be like the kids

without their iPhones. LOL It is not a requirement that we ever send any

posts, but if no one did and we all waited for someone else to break the ice, we

wouldn't have a support group. There is someone who needs to hear what you have

experienced so they will know they are not alone, so please share, lets all use

our keyboards to shore some else up.

Carpe diem,

Lottie Duthu

September 7, 2010

AMEN AND AMEN LOTTIE!!! We do need the support of each other, and sometimes we

can understand each other more than even a family member who can only listen to

our complaints or see what we are going through. They can love us, but they

cannot truly feel what we feel.

How many times we post something, and we get a bunch of responses because others

are amazed that we are all going through the same thing. We have a lot of good

people and have made lots of friends in our journey on the discussion boards.

God Bless Everyone.

>

> Thank you everyone for your good wishes. Our support group is like a big