Re: Digest Number 1198

[Guest guest]

In a message dated 10/14/00 8:10:09 PM Eastern Daylight Time,

egroups writes:

<< They are in the process of getting him seen somewhere else....Before IT

(the

immune system) attacks somewhere else.....Right now we are seeing where

they

want to send him and if he will be excepted.....They are looking into the

NIH >>

Luanne, Just wondering.have you spoken with the terrific folks at

Children's Hospital? In Boston, MA..they are one of THE best facility's for

children. Joanne

[Guest guest]

Joanne

Ty goes to Childrens Hosp in Phildelphia...His GI was orginally from Boston

Childrens....and is the one of the heads in Philly...His RA was recommended

by his GI....Soooo....

Thanks for you concern about Tyler

Luanne Ty's mom

[Guest guest]

Karl is 4ft. 2 in. and 52 lbs. And he turned 11 Oct. 1st. That puts him

below the 5th percentile I think.

He has responded to the reintroduction of Prednisone beautifully and is

really looking perky. We are tapering again and hope to get him off in a

month.

Aimee (Karl's mom)

Re: UTI

I've had a number of problems with UTI's and it hasn't changed over

the years either, I almost never ever had the usual symptoms that most have

, not sure if it is due to the use of steroids but there's been alot of

times I've not been on steroids and wound up with severe Uti, bladder and

kidney infections. only once it went to the kidney and I had back pain. I

didn't know anything was wrong and even when I first thought it was pain of

arthur , the pain was in my back bone and not on the sides as doctor would

think, he called this referred pain. To this day the only symptom of any of

these renal things is urgency to go, that's it!!! Guess I'm being spared in

one way but it sends me off to get urinalysis more often than I like lol

...the one last week was negative but the three before that were positive.

:):)Tree:):)

Re: UTI

Hi ,

We've missed you! It's been so nice to see messages from you here,

again : ) Thank you, too, for sharing your input on the UTI's and kidney

problems. That hasn't been a problem for so I can't add anything but

long-time JRAers like you have lots of good info from your own experiences.

I hope your arthritis hasn't been actively flaring. Are you still dealing

with painful joints and concerns about your replacement surgeries? How is

everything else going for you? Good, I hope.

Thanks for keeping in touch,

Georgina

i have had kidney probs for a long time, i am a jra-er myself.

naprosyn is very hard on the kidneys, naproxen sodium, aleve, all naprosyn.

i was diagnosed with nephratic syndrome last year and it was absolutely

imperative that i didnt take any form of it or motrin. her rheumy should

tell you and maybe your daughter needs a nephrologist. brandy

Has anyone experienced urinary tract infections as a result of being

on medication. My 4 1/2 old Nikki takes Naprosyn and Methotrexate. She

just had her first UTI and took an antibiotic and has to have her urine

checked again for test of cure and a basic urethral gram. I just worry that

the medicine could affect her kidneys and be causing the UTI. I have a

friend whose child has chronic nephritis from cardiac medication her

daughter was on.

Thanks

Chris

[Guest guest]

n,

I just want to make sure I understand this clearly. Did your boys have the

opiate effects just from withdrawaling the dairy? Did you then try the gluten

too? I have only done the dairy so far, don`t really know how to do the

gluten too- to eliminate both from my son`s diet would basically be

eliminating 90% of his diet. He is a very picky eater. I have not had any

food testing done yet, but I have an appt with a Dan dr. next month. I hope

to get tested for food sensitivites and the gluten thing if possible. What

does the test by Pfeiffer cover? Also, is this something insurance covers? No

way we could afford $900.BTW, did you ever do a challenge on the milk-I mean

reintoduce it? Danny has been 11 days w/out milk now and he still has

rages/meltdowns. Did I mention that I did the challenge once and the first

time I took away the milk, there were no rages or meltdowns at all, only

after I reintroduced milk and then subsequently took it away did the problems

start. What do you make of this? I`m just not sure if it is the milk or

something else? BTW, what is the title of the book you mentioned by

Saroussi? Thanks for any insight you can give me. I`m just trying to figure

out if it`s the milk or something else.

Debbie

[Guest guest]

on 13/8/02 3:57 AM, Moyerhomeschool3@... at Moyerhomeschool3@...

wrote:

> n,

> I just want to make sure I understand this clearly. Did your boys have the

> opiate effects just from withdrawaling the dairy? Did you then try the gluten

> too? I have only done the dairy so far, don`t really know how to do the

> gluten too- to eliminate both from my son`s diet would basically be

> eliminating 90% of his diet. He is a very picky eater. I have not had any

> food testing done yet, but I have an appt with a Dan dr. next month. I hope

> to get tested for food sensitivites and the gluten thing if possible. What

> does the test by Pfeiffer cover? Also, is this something insurance covers? No

> way we could afford $900.BTW, did you ever do a challenge on the milk-I mean

> reintoduce it? Danny has been 11 days w/out milk now and he still has

> rages/meltdowns. Did I mention that I did the challenge once and the first

> time I took away the milk, there were no rages or meltdowns at all, only

> after I reintroduced milk and then subsequently took it away did the problems

> start. What do you make of this? I`m just not sure if it is the milk or

> something else? BTW, what is the title of the book you mentioned by

> Saroussi? Thanks for any insight you can give me. I`m just trying to figure

> out if it`s the milk or something else.

> Debbie

>

>

>

[Guest guest]

In a message dated 8/7/03 12:11:16 PM Eastern Daylight Time,

writes:

> From: " " <mystical1972@...>

> Subject: wisdom needed

>

> We have at last found the cause of Astrid's intractable seizures- her

> skull plates are misaligned causeing pressure on the brain, an

> asymetric frontal horn hence seizures. This damage was most likely

> caused by her forceps delivery. We have had some success with Cranio

> maniupulation (the szs stopped for a while) but they are back with a

> vengence. I wanted to ask you wise people if anyone has heard of any

> other way to correct this.

>

>

>

>

Cranial sacral therapy by a skilled practitioner can be very helpful.

Check out www.upledger.com for practitioners in your area.

Fortunately, our family physician is trained in this technique and it has

been helpful for both of us.

mjh

[Guest guest]

In a message dated 8/7/03 12:11:16 PM Eastern Daylight Time,

writes:

> Perhaps bringing oxygen to the injured area will help the flow of cerebral

> spinal fluid, which is what cranial works helps in doing. This might allow

> the plates in the brain to normalize.

>

> See Dr. Perlmutter's web site and also Dr. Neubauer's.

>

> >>>>> Would you please provide LINKS to the above websites?

> Thanks

>

[Guest guest]

Dear ,

I had a Synchromed, Isomed, & finally, a pediatric Synchromed over a period of about 5 years. I had amazing relief - people actually told me I looked 10 years younger- at first. For about the first year or so, I wouldn't have given up that puppy for anything because I didn't even have period cramps. The second year, I got some relief, but they had to add other drugs to the MS to achieve it, & it wasn't as dramatic as the first year. After the second year, the pump was really not effective anymore.

I eventually had to INSIST that they change the narcotic to something other than MS, as EVERY time they increased my dose by 15% or more, I would vomit profusely until they turned it back down. It also became dislodged on more than one occasion & I had to have several pump pocket revisions. I finally had it removed in preparation for what I thought was to be my revision surgery a couple of years ago. I honestly could not tell any difference in my pain level- it had become that ineffective. It also had become that painful. With the progression of my flatback, I had the interesting problem of my bottom rib resting on the top edge of the pump - OUCH!!!

Now I have a LOT of scar tissue - so much that when you touch my abdomen, it feels like the pump is still inside me. On Monday, I will be undergoing surgery to remove the adhesions left behind by this little adventure.

Anyway, you are not alone. There is at least one flatbacker with intrathecal pump experience. I certainly hope yours proves to be better than mine. I will tell you that these pumps were not designed for long-term use & that there have been no real studies of their efficacy for long-term use. The original purpose & intention of these devices was to provide pain relief in terminal cancer patients. (This information is a couple years old. It is possible, although not likely, that someone has done a study, or at least started one since then.)

Hope this helps.

Blessings,

Carla Kay

[Guest guest]

I was told at the imaging facility that MRI's could superheat the metal as well as cause significant artifacts. The better option has been a myelogram with a CT scan to follow. I have an appointment on Monday with my neurosurgeon and am VERY anxious. I already know I will need yet another fusion! My last surgery was right after Hurricane which shut down the Houston Medical Center. It was an awful experience! I got pneumonia and they were not yet fully functional as Methodist Hospital had flooded and they were using a skeleton staff. They "forgot"to titrate down my Dilaudid drip so they sent me home on a cold turkey withdrawal. I had to return to the hospital and given IV Valium to help me withdraw. SO needless to say I am very wary of being back in Methodist,especially with the huge amount of people living in the Dome,I know the medical center is inundated with sick people from Hurricane Katrina.I seem to like hospitals and hurricanes! LOL!!

Mashell

wrote:

[Guest guest]

Dear Carla Kay,

I can't tell you how pleased I was to learn that someone here has

been through this -- as bad as I felt for you, reading about some of

your trials and tribulations with intrathecal drug delivery.

All in all, I found your post fascinating.You are obviously very

well informed about these pumps, not to mention highly experienced

with them. You have raised what now strikes me as an extremely

important issue, i.e., that of short-term vs. long-term efficacy.

By MS, do you mean morphine sulfate? And what did they switch you to

after that?

You have certainly been through way more woe than anyone should have

to endure -- the vomiting, the dislodgments, etc. I take it you

would not consider having a pump installed again at some time in the

future?

Why do you think the analgesia diminished over time as it did? Is it

simply that tolerance is inevitable and universal? (But if so, why

is it that patients with serious pain, as far as I know, do not

predictably develop tolerance to oral narcotics or the fentanyl

patch?) Do you think there is some other explanation for your own

problem, perhaps involving the catheter hook-up or some other factor

not necessarily related to the medication per se? Did your physician

(s) have any ideas as to what was happening when you no longer

experienced decent pain relief?

My neurosurgeon did warn me about some degree of tolerance that

might develop, but he did not seem to be predicting that the

whole " pump solution " might turn into a dud after a year or so! I

will definitely be plowing through the latest studies at the first

opportunity, in search of any possible longer-term data.

Have you found any useful alternative approaches to dealing with

pain?

Thanks so much for your very informative post.

Best,

> Dear ,

>

> I had a Synchromed, Isomed, & finally, a pediatric Synchromed over

a period

> of about 5 years. I had amazing relief - people actually told me

I looked 10

> years younger- at first. For about the first year or so, I

wouldn't have given

> up that puppy for anything because I didn't even have period

cramps. The

> second year, I got some relief, but they had to add other drugs to

the MS to

> achieve it, & it wasn't as dramatic as the first year. After the

second year, the

> pump was really not effective anymore.

>

> I eventually had to INSIST that they change the narcotic to

something other

> than MS, as EVERY time they increased my dose by 15% or more, I

would vomit

> profusely until they turned it back down. It also became

dislodged on more than

> one occasion & I had to have several pump pocket revisions. I

finally had it

> removed in preparation for what I thought was to be my revision

surgery a

> couple of years ago. I honestly could not tell any difference in

my pain level-

> it had become that ineffective. It also had become that painful.

With the

> progression of my flatback, I had the interesting problem of my

bottom rib

> resting on the top edge of the pump - OUCH!!!

>

> Now I have a LOT of scar tissue - so much that when you touch my

abdomen, it

> feels like the pump is still inside me. On Monday, I will be

undergoing

> surgery to remove the adhesions left behind by this little

adventure.

>

> Anyway, you are not alone. There is at least one flatbacker with

intrathecal

> pump experience. I certainly hope yours proves to be better than

mine. I

> will tell you that these pumps were not designed for long-term use

& that there

> have been no real studies of their efficacy for long-term use.

The original

> purpose & intention of these devices was to provide pain relief in

terminal

> cancer patients. (This information is a couple years old. It is

possible,

> although not likely, that someone has done a study, or at least

started one since

> then.)

>

> Hope this helps.

>

> Blessings,

> Carla Kay

[Guest guest]

Mashell,

I was under the impression that MRI's are only dangerous

(such as superheating) for certain kinds of metal in one's body, and

that the kind used in Harrington Rods is not dangerous during MRI.

The artifact part I agree with, though -- that basically means the

image right around the rods can be blurry and not especially useful.

I've had quite a few MRIs since both my Harrington Rod surgery and my

surgery to implant a total hip prosthesis, with no superheating.

loriann

> I was told at the imaging facility that MRI's could superheat the

metal as well as cause significant artifacts. The better option has

been a myelogram with a CT scan to follow. I have an appointment on

Monday with my neurosurgeon and am VERY anxious. I already know I

will need yet another fusion! My last surgery was right after

Hurricane which shut down the Houston Medical Center. It was

an awful experience! I got pneumonia and they were not yet fully

functional as Methodist Hospital had flooded and they were using a

skeleton staff. They " forgot " to titrate down my Dilaudid drip so they

sent me home on a cold turkey withdrawal. I had to return to the

hospital and given IV Valium to help me withdraw. SO needless to say

I am very wary of being back in Methodist,especially with the huge

amount of people living in the Dome,I know the medical center is

inundated with sick people from Hurricane Katrina.I seem to like

hospitals and hurricanes! LOL!!

> Mashell

[Guest guest]

The safeway in the sunset, as well as the safeway in diamond Heights have the kinnickkinnick stuff too. The one in Diamond Heights had bagels too!