What do I do?

August 27, 2002

Just did this actually.

Go GFCF immediately. I fed her protein at every meal.

No phenols. Take an Epsom Salt bath at least once a

day. Keep up on your other supplements, if any.

We had one accidental gluten infraction which caused a

fever but she were fine within hours of our return to

enzymes.

--- Kelley <satine14@...> wrote:

> Hi,

>

> I have been lurking for a while and gleaning

> wonderful information on

> all different subjects ( thats probably why I love

> this list!) but

> now I have a problem.

>

> I ordered more AFP pep a week and a half ago (I am

> in Australia so it

> takes a while) and then in my wisdom - or stupidity

> hopefully due to

> this horrible flu I can't shake - I decided to up my

> sons dose to 2

> caps per meal and one with snacks. Well I now only

> have one more

> dose left!!!! He has been doing wonderfully on the

> 2 caps (we are

> not GF/CF but they are limited to 1-2 meals per day,

> and he still has

> 'looseish' stools) I have found the happy medium I

> believe.

>

> But what do I do now? Obviously we will run out

> before the enzymes

> arrive and I have been desperately been trying to

> find some GF/CF

> stuff that he will tolerate, but to no avail. I

> can't feed him fruit

> and chips until they arrive as he is quite

> overweight as it is. But

> then when they come do I go back to 2 caps per meal

> or do I start

> from scratch again? I am dreading the possible

> regression as we only

> just 'got him back' after a move across the state

> and changes to all

> his therapists.

>

> Help!

>

> Kelley

> (who managed to get her head out of the toilet long

> enough to write

> this rather disjointed email)

>

March 30, 2007

What would I do? I'd do it myself. Have been for about a year now with 22g

1 1/2 " . For some reason it just doesn't hurt as much as when my wife was doing

it.(Hmmm). Actually most of the time it does not hurt at all.

Dave

ogarchamplin <gripperm@...> wrote:

My wife is out of town for five days and she always gives me my T shot

in the Glute on Fridays. She wont be back until Wednesday so should I

call my PcP and see if a nurse can give me my shot?

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

Don't pick lemons.

See all the new 2007 cars at Autos.

March 30, 2007

What size needles do you have you can do the shot into your thigh but only sink

the needle no more then one inch.

http://spotinjections.com/index3.htm

ogarchamplin <gripperm@...> wrote:

My wife is out of town for five days and she always gives me my T shot

in the Glute on Fridays. She wont be back until Wednesday so should I

call my PcP and see if a nurse can give me my shot?

Co-Moderator " Don't believe anything you hear and only half of what you see. "

Phil

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

We won't tell. Get more on shows you hate to love

(and love to hate): TV's Guilty Pleasures list.

March 30, 2007

I have 21 and 22G 1 1/2 needles and I have never done the tigh shot before

> My wife is out of town for five days and she always gives

me my T shot

> in the Glute on Fridays. She wont be back until Wednesday so should I

> call my PcP and see if a nurse can give me my shot?

>

> Co-Moderator " Don't believe anything you hear and only half of what

you see. "

> Phil

>

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

> We won't tell. Get more on shows you hate to love

> (and love to hate): TV's Guilty Pleasures list.

>

March 30, 2007

In your Glute?

> My wife is out of town for five days and she always gives

me my T shot

> in the Glute on Fridays. She wont be back until Wednesday so should I

> call my PcP and see if a nurse can give me my shot?

>

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

> Don't pick lemons.

> See all the new 2007 cars at Autos.

>

April 2, 2007

Yes, and I aim for right about where my wallet would be (learned that from

someone on this msg board). Doing it now for over a year and no problem at

all.

grippermania <gripperm@...> wrote: In your Glute?

> My wife is out of town for five days and she always gives

me my T shot

> in the Glute on Fridays. She wont be back until Wednesday so should I

> call my PcP and see if a nurse can give me my shot?

>

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

> Don't pick lemons.

> See all the new 2007 cars at Autos.

>

September 1, 2007

Hi can you post your E2 tests with the range and units it is best to keep

E2 between 10 to 30 some do good at 40 pg/ml. What kind of T are you doing for

your shots what dose it say on the box. Mine says 200mgs/ml of Depo

Testosterone in a 10ml vile. So what does yours say and how much do you put in

your needle. Doing 100mgs a week shots my levels were low so we upped the dose

to 150 this for me is a .75 ml shot. My levels now are up into the upper 1/3 of

my labs range.

<willie6532@...> wrote: Well, I have been on TRT

shots for 3-4 months with 100mg once a week.

I have tried twice a week but my arms were getting tired. I tried the

thigh but just could not do it. I have moved to Austin, Texas and

found a new Urologist which took my levels for the first time. All I

know is that my Total T was 200 which is up from 151 but it is stil

low. I have had my E2 check about 3 months ago and it was within

normal range so that is not the issue. I have been on TRT for at least

1 yr and still I cannot get my levels higher than 200. I have been on

Testim and Androgel and I am very confused. I thought injecting TRT

would increase it but it has not. Any suggestions?

-Dave

Co-Moderator " Don't believe anything you hear and only half of what you see. "

Phil

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

Sick sense of humor? Visit TV's Comedy with an Edge to see what's on,

when.

November 24, 2007

Hi ,

I know all of this seems overwhelming at first, but you are

starting at a good age. At 5 mo you can try aggressive

repositioning, or try getting a helmet/band. If your baby is severe

I would just try getting the Rx for a band. Aggressive repo is

basically making sure your baby spends no time resting on his flat

spot. Either keep him off his head entirely (baby carrier, bumbo

chair) or if on his head he should rest on the prominent area. This

means even when he is sleeping,so it is alot of work. There are tips

in the files section of this group. Aggressive repo gets much harder

as kids get more mobile so if you choose this path you'll need to

track your progress (photos) to see if it is working.

To get a helmet/band you need a prescription from a doctor.

Sometimes the ped will write it, and sometimes they prefer you see a

specialist to get the Rx. It just depends on the doctor. THe most

common kinds of bands are DOCband (cranialtech.com) Starband

(orthomerica.com) and Hanger band. Where are you located? Maybe

someone can recommend a provider to you.

If you want to post some pics of your baby to the photo area, you

can get some opinions on his head there. Top view usually shows

things the most. take care.

-christine

sydney 22 mo starband grad

>

> Hi there, my son was just diagnosed with left torticolis and

> plagiocephaly. We began physical therapy a couple weeks ago and

it is

> going very well for him. We are noticing great progress for his

> torticolis, but I am concerned with the plagiocephaly. I am very

new

> to all of this and want to make sure that we are doing everything

right

> for my son. He will be 5 months on Monday (11/26). Does anyone

have

> any advice for me? SHould I push the doctors about getting him a

> helmet (is that what they are called) or is there something else

we

> should be doing? Any advice would greatly be appreciated.

>

July 23, 2008

I got saline implants on April 2, 2008 and have horrible muscle

twitches, spasms, head spasms, foggy memory and headaches ever since.

What are the best steps to take? I live in Los Angeles, any doctors

here anyone could recommend?

July 23, 2008

Hi Chana,

It sounds like you are one of the fast reactors. There are some women

that get sick right away. Other women take a couple of years and still

others up to a decade.

The only recommendation I can give, based on my own personal

experience, is to get the implants out as fast as you can BUT only with

a doctor who will do it right. I believe we have some California

doctors listed on our recommended surgeons list, so please check that

out. We do not recommend going back to the original surgeon, as they

will not take it very seriously, we have found.

The other steps you can take at the moment before you get your surgery

scheduled would be to help your inflammation by going on an anti-

inflammatory diet. This would involve eliminating saturated fats,

meats and animal products, and eating fish, flax oil, and taking cod

liver supplements. Omega3 fats are anti-inflammatory, while omega 6

fats are inflammatory.

The diet may not produce a great effect...as long as those implants are

there, and for some time afterward, your body will be in reactive

mode. It took me only 9 months to get sick, but over 4 years to get

better. The body just needs time to recover, so the sooner you get the

implants out, the sooner you can begin to recover. We're here for you.

Take care,

Patty

>

> I got saline implants on April 2, 2008 and have horrible muscle

> twitches, spasms, head spasms, foggy memory and headaches ever since.

> What are the best steps to take? I live in Los Angeles, any doctors

> here anyone could recommend?

>

July 27, 2008

Hi Chana,

I was a fast reactor, too. I started having symptoms right away and

just continued to get worse until I had the implants removed six

months later. I was confused but I knew that I didn't have any of

these symptoms prior to getting implants, and it was more than a

coincidence when I got sick afterwards. I never regretted having

them removed, and I love my natural shape much better.

Good luck to you. Perhaps Gretchen knows of some doctors who can

help, I think she lives in the LA area. Her website is as follows:

http://www.myimplantstory.com/

Sis

> >

> > I got saline implants on April 2, 2008 and have horrible muscle

> > twitches, spasms, head spasms, foggy memory and headaches ever

since.

> > What are the best steps to take? I live in Los Angeles, any

doctors

> > here anyone could recommend?

> >

>

October 14, 2008

Donna,

I am behind you 100% girlfriend. I do not understand why Each State is

different. Nov 1st will be our 2nd Educational Day and then we will have the JA

Walk 2009 May 2, 2009 We are pumped up about it as this is what is needed to

get the word out and Helping these Kid's. I like you Volunteer my own time

and I do it for the Kid's and Parent's as I have been there with no where to

turn. YOU are the one who showed me the way.

You know it is not about the Money with us but it would help but Our Goal

is to get the word out. Get these Families connecting and in a Supportive

group to where they do not feel alone. Just as for the Kid's. These get

together's are for what the AF is for or suppose to be. It is not about the

Money as

no matter how much money we have it can not take this Juvenile Arthritis

away.

But for the Foundation I assume it is about money. If it does not bring

in such and such amount then they axe the whole thing. WELL Juvenile Arthritis

is not something which they can throw in the Trash as JA is there and should

be a BIGGER part of the AF no matter what. These kid's are Our Future. We

need to provide them with what we know and How to look into the Future for their

Dreams.

I know for a FACT that you have worked your butt off for this and We have

seen so much progress going on there. It is not about the AF it was about

the Stories the kid's wrote which made it worth all the effort.

Like here where I live it is not about money it is about what it brings

to these Kid's as it is a Happy day where they have fun and see they are not

alone. As well as the Families. I would fight for this as it is well worth it.

The AF raises money yes and it should be spent where their mouth is

Talking about JA but not doing anything to help is not good. I know Seniors who

have Arthritis and when they see coming in they always ask her how she

is feeling. Days when she is not with me they ask about her and say I know

what she is going through and I do not wish this on a Child. Honestly I think

if it was left to the Seniors with Arthritis they would choose to care for

those kid's rather than their self. Just my 2 cent's worth. Ummm Donna get

those Boxing Gloves on again :-)

Robbin

**************New MapQuest Local shows what's happening at your destination.

Dining, Movies, Events, News & more. Try it out!

(http://local.mapquest.com/?ncid=emlcntnew00000001)

October 14, 2008

My cynical opinion is that it comes down to apathy. I loved volunteering for

the AF but I continually ran into these sorts of issues as well. I started

to feel bad to be a 'poster child' to get $$ for services and than see how

often the fundiong ofr the JA stuff was not given much attention. Like camp

was supposed to be free and someone wanted it to be like that and provided

$$ but b/c it did not specificaly say for JA camp, camp did not remain free

as it was supposed to. So much more than that but just, IDK, I worked so

hard and like others with this DD, did things that were a real sacrifice to

my personal health b/c it was so important for me that others got much

needed support.

I finally got to the point of saying or thinking that the problem is that

those hired and making these decisions are all to often people Without the

disease of Arthritis and have NO idea how hard it is for us to deal with.

They might feel they care about the issue and work for a non profit but

loose sight of what things like this really mean to someone who is

suffering.

I know not one person working at our chapter actually had any type of pain

arthritis or anything. They were all basically normal people and many treat

it as just a job...

I don't know if that's the case at every place but it's something I observed

a lot and our chapter does get a lot of monies and can do a lot.

When i was at OT last time, there were two other adults there wih rheumatic

diseases. One waas asking the OT about how to get info about good assitive

devices for people with RA. The OT said the Aqrthritis foundation and

immediately, they responded how unhelpful and useless the AF was in

providing this type of information and resources for people beyond basic

information. Honestly, I was surprised to see and hear this exchange because

I felt this way to however I thought maybe it's becasue I have been on the

'inside' so long and felt biased.

I don't know how the issue can be resolved. I do think it would be nice if

people hired for these jobs were people whose lives were truly impacted by

these diseases in one way or another would help.

Anyways, Im not sure what to say Donna accept I hear ya...

I finally gave up on my lovely activity of attending JA camp and other

things as well. I just got tired of the changing of staff at the foundation

and lack of care and true compassion, and just so much.... I think a lot of

it made me feel personally insulted even though Im sure none was

intentional. I just feel that focus on earning $$ for research and shmmozing

with those tha can provide the $$ has taken presendence over true awareness

and help to all with the disease.

The volunteers are often the awesome people in the organization as most of

usa re actually impacted by arthritis. I rememeber our chapter used to

REALLY honor volunteers efforts but than l;atter, it became a $$ issue to

make a nice luncheon for volunteers while loads is put in to make fancy

dinners and gifts for those with $$ to give to the org. Yet, it's the

volunteers like us that often keep things going like the camp, organizing

the conferences, the holiday parties, and all of that.

Anyways, just my 5-10 cents worth....

Cynically yours,

Issadora lol...

On Tue, Oct 14, 2008 at 7:17 AM, <ajaoky@...> wrote:

> OK this is an AF issue and I do not want to offend any AF volunteers,

> staff or friends. I have a question. For many years now , 10 to be exact, I

> have put many hours, ideas and heart into events, programs,?advocating

> and?working with families. I volunteer my time, I do not earn a penny just

> the satisfaction of doing what I do?because I enjoy it and love it.

> This weekend I worked at our Arthritis EXPO. This was our 2nd one. Like the

> first this was a great event, great turnout and I enjoyed working at the

> advocacy booth. I love being an Arthrits Ambassador and making my voice

> heard (imagine that..lol). When I emailed about volunteering I said I wanted

> to work either the JAA booth or the advocacy booth. Much to my surprise

> there was NO JAA booth nor was there any (NONE) info available about JA at

> the entire event! No signs, nothing. The chapter manager said she simply

> forget the materials. Only my shirt that said " Kids Get Arthritis Too " was

> present. I love my local branch employes and our Chapter folks but I do not

> understand......

> Also we had our first JA Funday in August. It was a huge success. We were

> at maximum capacity and everything about it was good. We were looking

> forward to planning our second for 2009 but I was told Saturday it will not

> happen. It has been axed. Its an issue of funding so we are returning to

> having an arthritis walk. Thats fine, I love the walks and never understood

> why they cancelled our 2009 walk. I am hoping to somehow incorporate our JA

> funday into the walk but obviously it will be a social event and not an

> educational one. What a shame, huh?

> I just dont know what to do? I feel the kiddos and their parents still are

> not a prioroity and believe they should be!

> Am I wrong to be saddened over this and what can I do?

> Does anyone know of any USA based non for profit agencies for kids with

> arthritis?

> I love the AF, volunteering with them and love my advocacy work I just dont

> understand why kids get cut when ever a problem arises. Louisville is a very

> charitable city and when it comes to kids, even more so......

>

> Just not getting it....

> any insight?

> Donna

>

October 14, 2008

Hi Donna,

I walk a fine line here in our state. My group falls under the

Arthritis Foundation, but I march to my own drummer. Am I cynical

about the Foundation? Yes. That being said, our Foundation is run

by a very compassionate person, who has RA herself. But most of the

time, her hands are tied. Another woman and myself are starting our

fifth year of running a JA group for the state of Oregon and SW

Washington. I work very hard to make all of the parents welcome and

answer all of their questions. In many ways, our group has become

like a large family. We have over 100 families in our group now. We

have quarterly meetings. The entire family is invited, and we always

keep the meetings free. We have educational speakers for the parents

and fun activities for the children. How do we do it? The speakers

are always free. I provide all of the chaperones by tapping friends,

etc. I keep the venues very simple. I try to keep everything simple

and let the parents network and get the support which they need. We

have a huge picnic in the summer. Now you are going to ask how we

get all of this funded. We publicize everything via email and the

local ped rheumy hands out our flyers. He hands out my home number

and has new patients call me.

I have seen how we help people. I take the calls of the parents

calling me in anguish over the diagnosis of JRA. It helps me to cope

to help them. I pay for 90% of our meetings. We are a middle class

family, but for whatever reason I am driven to do this. Maybe, it is

because when n was diagnosed with systemic JRA, I had no one to

talk to for the first 5 years.

We will be having our first JRA camp in Oregon this summer. The

fraternal group, the Eagles, has provided funding for it. I am

adamant that it has to remain free for the parents. I know how

expensive this disease is for a family. I will beg, borrow, or steal

to keep the camp free for the families. (n, 19, systemic)

On Oct 14, 2008, at 7:17 AM, ajaoky@... wrote:

> OK this is an AF issue and I do not want to offend any AF

> volunteers, staff or friends. I have a question. For many years

> now , 10 to be exact, I have put many hours, ideas and heart into

> events, programs,?advocating and?working with families. I volunteer

> my time, I do not earn a penny just the satisfaction of doing what

> I do?because I enjoy it and love it.

> This weekend I worked at our Arthritis EXPO. This was our 2nd one.

> Like the first this was a great event, great turnout and I enjoyed

> working at the advocacy booth. I love being an Arthrits Ambassador

> and making my voice heard (imagine that..lol). When I emailed about

> volunteering I said I wanted to work either the JAA booth or the

> advocacy booth. Much to my surprise there was NO JAA booth nor was

> there any (NONE) info available about JA at the entire event! No

> signs, nothing. The chapter manager said she simply forget the

> materials. Only my shirt that said " Kids Get Arthritis Too " was

> present. I love my local branch employes and our Chapter folks but

> I do not understand......

> Also we had our first JA Funday in August. It was a huge success.

> We were at maximum capacity and everything about it was good. We

> were looking forward to planning our second for 2009 but I was told

> Saturday it will not happen. It has been axed. Its an issue of

> funding so we are returning to having an arthritis walk. Thats

> fine, I love the walks and never understood why they cancelled our

> 2009 walk. I am hoping to somehow incorporate our JA funday into

> the walk but obviously it will be a social event and not an

> educational one. What a shame, huh?

> I just dont know what to do? I feel the kiddos and their parents

> still are not a prioroity and believe they should be!

> Am I wrong to be saddened over this and what can I do?

> Does anyone know of any USA based non for profit agencies for kids

> with arthritis?

> I love the AF, volunteering with them and love my advocacy work I

> just dont understand why kids get cut when ever a problem arises.

> Louisville is a very charitable city and when it comes to kids,

> even more so......

>

> Just not getting it....

> any insight?

> Donna

>

October 14, 2008

Great point Donna! When my team walked this past spring in honor of my

daughter . I was so surprised and a bit ticked, that they had no

booth for JRA, and no literature for that matter. I realize that more

adults have it than children, but it is totally aggravating that the

awareness for JRA isn't even present at AF events. I understand it is

a different disease under the ARTHRITIS umbrella. As an advocate

myself, I would like to see an equal amount of emphasis put on JRA.

Well at least a darn booth. I love the Mass branch as well, but it is

frustrating. I would have loved to see infor " Kids get Arthritis too "

brochures...etc...etc...

Thanks for listening to me vent ....lol

Lani

>

> OK this is an AF issue and I do not want to offend any AF

volunteers, staff or friends. I have a question. For many years now ,

10 to be exact, I have put many hours, ideas and heart into events,

programs,?advocating and?working with families. I volunteer my time, I

do not earn a penny just the satisfaction of doing what I do?because I

enjoy it and love it.

> This weekend I worked at our Arthritis EXPO. This was our 2nd one.

Like the first this was a great event, great turnout and I enjoyed

working at the advocacy booth. I love being an Arthrits Ambassador and

making my voice heard (imagine that..lol). When I emailed about

volunteering I said I wanted to work either the JAA booth or the

advocacy booth. Much to my surprise there was NO JAA booth nor was

there any (NONE) info available about JA at the entire event! No

signs, nothing. The chapter manager said she simply forget the

materials. Only my shirt that said " Kids Get Arthritis Too " was

present. I love my local branch employes and our Chapter folks but I

do not understand......

> Also we had our first JA Funday in August. It was a huge success. We

were at maximum capacity and everything about it was good. We were

looking forward to planning our second for 2009 but I was told

Saturday it will not happen. It has been axed. Its an issue of funding

so we are returning to having an arthritis walk. Thats fine, I love

the walks and never understood why they cancelled our 2009 walk. I am

hoping to somehow incorporate our JA funday into the walk but

obviously it will be a social event and not an educational one. What a

shame, huh?

> I just dont know what to do? I feel the kiddos and their parents

still are not a prioroity and believe they should be!

> Am I wrong to be saddened over this and what can I do?

> Does anyone know of any USA based non for profit agencies for kids

with arthritis?

> I love the AF, volunteering with them and love my advocacy work I

just dont understand why kids get cut when ever a problem arises.

Louisville is a very charitable city and when it comes to kids, even

more so......

>

> Just not getting it....

> any insight?

> Donna

>

October 15, 2008

Hi Donna-

This has been a big issue for us in our area. I'm a volunteer for the AF as

well.... and despite the fact that I felt there was not enough being done for

kids, I spent the first couple of years silently fuming about it. I guess I

just thought there was no way that one mom, or one family, could make a change

within such a large national organization.

But about four years ago - things really shifted here. One of the families who

was hugely successful at our walk - a huge part of our committee - decided to

part ways and create their own non-profit. They simply felt that the AF had

nothing to offer young kids especially - and their daughter was 3 at the time.

They felt somewhat deceitful fundraising behind their daughter's story - when

the AF did not have JA programs. When our local executive director found out

about it - she approached the chapter president and practically demanded that we

make some changes. When you say it is a matter of money - in a way, you are

absolutely correct. But - it's about money because family teams at walks are

generally the highest fundraisers - particularly families of children with JRA.

It's not tough to understand that if you alienate those families by not serving

their needs - they will leave - and their walk money will go with them.

Now- I DO believe that the people at this chpater really wanted to serve kids

with JRA - I don't mean to sound cold when I relate it to money. But

practically speaking....it's a factor.

Locally - they immediately added some educational / fun days for families. They

also added a family camp to go along with the summer camp for kids. And now -

the chapter is starting a huge fundraising campaign to create a Center for

Excellence in Pediatric Rheumatology - to train more fellows, be a trial

research location and serve areas with no Ped rheumy - such as Las Vegas. It's

a huge challenge - but the whole chapter is on board to make some major

developments for JA.

Nationally - I've seen a huge shift as well. It seems like just yesterday that

this list worked to create our own wristbands because the AF didn't have any.

Now - there is a whole KGAT product line (The thanks for that should really go

to Liz - who essentially got the whole project off the ground - without

waiting for permission In addition - whenever I attend any national meetings

- I see a real emphasis on JRA. As a matter of fact - at the development

conference in August, there were several sessions on creating quality JA

programs. I see stories each month in Arthritis Today. The AF has also

created a national JA Alliance -

I blathered on - but in short - I do think you can make a change there. If your

local staff does not feel empowered to make some changes for whatever reason -

go to the chapter staff. And if you are not heard, I would contact the national

staff in Atlanta - perhaps start with the JA Alliance staff - you can find them

through the arthritis.org web site.

People like , Liz , and the local mom here in my hometown did not take

" No " for an answer - and they have made some huge strides in their areas. It's

due to their persistence and passion - which you are certainly not short of! And

the AF has every reason ($) to listen to you.

I'm a bit removed from KY - but if there is anything I can do to help, just say