help

May 5, 2002

-Hi Bob.....I was diagnosed in 1996. It was a real kick in the butt.

No more golfing, no more piano, etc, etc. Nothing but pain and

misery. And it took a while to find medications that suited my needs.

It seems that no one drug works for everyone. And , unfortunately,

lots of people with RA seem to have other maladies as well. I feel

fortunate to have just the single diagnosis. It could be so much

worse, as others can attest.

From the number of replies to your posting, you won't lack for people

who care about your situation, your health, and your feelings. I'm

real new to this group, and find the members very open, honest, and

willing to listen and help with whatever is on your mind. I'm sorry

to hear your e-mail went unanswered. But with this disease each day

is different and its hard to predict the ability to write, sit at the

puter for very long, or even have the energy to read all the mail. So

it probably wasn't anything personal....just someone having a bad

day.:-)

From what I have learned, in most cases the first year or so is the

worst. Sometimes it takes that long to find the right doctor, meds,

routines, and living skills that work for you. So don't give up just

yet! If you've read any of the postings, you know that we all have

our problems...from meds, to exercise, to depression, and (one of the

worst)......INSURANCE. Hate them guys!! So bring it on and ask

away.....or just complain if you feel like it. That's what a support

group is for.

Hope you are feeling better. Hope to hear from you again. And if you

would rather send another e-mail instead of posting to the group, you

know where to find individual addy's, right? Just please be

patient....we all have this nasty disease, too :-)

Cris in Ohio

-- In @y..., " bob a. " <bobb_texas@d...> wrote:

> hi:

> last week i sent an email to an individual memeber of this group in

hopes of a response. received none.

> i'm hoping someone will receive this, and respond. i was diagnosed

with RA early last year, and am currently bombarding my system with

drugs, and i'm still doing downhill. not looking for a miracle cure,

just maybe some information from someone who is about the same stage

as i, and who has had some success with treatment. it has now come to

the point where my life, my happiness, and my financial well being

are being threatened — not to mention the fact that i'm about to lose

my f------- insurance. any reply would be appreciated.

>

> bob

>

> ____________________________________________

> Service Brought To You By http://WWW.DWP.NET

September 7, 2002

I hope it is okay that I post the answers to your questions to the list.

> They were important questions to ask and I think the answers will help

> others who do not know if they should go to Dr. G.

>

> This is the most important thing you will ever do! I know there is

another

> " CURE " every week and you get tired of chasing them. I probably wouldn't

> have gone to see Dr. G if we weren't already going there for Thanksgiving.

> But that would have been the biggest mistake of my life. My kid wouldn't

> have made it without him and ABA.

>

> My son was in the same place as yours at age 5. He was verbal, but not

> conversational. He talked only about the things he was interested in then

> like elevators, wall plugs, computers, plug it in air fresheners, and

street

> signs. My son always had language, but it definitely wasn't

conversational

> speech. When my son entered kindergarten at almost six years old, he was

in

> the third percentile for speech. By that time we had been seeing Dr.

> Goldberg for about a year.

>

> The hardest thing I ever did was to keep speaking to a child who showed no

> response one way or another that he understood me. It was only later

after

> he was better that I realized he was listening. Think about it. How long

> does it take a normal kid to learn language? Three years to be

proficient.

> If you could wave a magic wand and make his body normal, it would still

take

> time to catch him up. Keep talking to him. For our kids, English is a

> foreign language that you have to teach them.

>

> My son is thirteen and is now recovered. He is not cured because his

immune

> system still needs some medications for him to remain " normal. " It is not

> an overnight " cure, " but takes hard work and time. Some people don't have

> the stubbornness or stamina to do this for years. This is the hardest

thing

> I ever did.

>

> However, by the third grade, my son tested in the 85th percentile for

speech

> and by fifth grade no longer received any assistance at all at school.

Some

> people think this might be a result of ABA. But I couldn't teach him some

> things with ABA before Dr. G. Also when we moved I forgot to refill some

> medications. Within a week, I saw autistic behaviors I hadn't seen in

> years. Dr. G's bedside manner at times can leave us not wanting to go

back,

> but he is correct in the science and treatment of our kids.

>

> On my son's current seventh grade report card, he earned all " A's; " and a

> " B " in art. He is in all the accelerated classes with no assistance.

None

> of his teachers or friends even knows he was ever diagnosed with autism.

> But more importantly, he is well liked and doing all the things the

doctors

> said would never be possible. I have lots of info to share, but hope I

> don't overwhelm you, in the next two private emails I will forward what I

> have sent others. I can't send them to the list because of the attachments

> (list doesn't take them) but will forward them to any one who emails me

> privately.

>

> Finally after this long winded response. I want to explain how thing with

> Dr. G works. After your initial visit, you only occasionally have to

travel

> to see him. You can plan your family vacations to Disney around these

> visits.

>

> All follow-up appointments (about every six weeks in our case) can be done

> by fax and phone. On the phone appointments we do the same thing that

would

> happen in an office visit. We discuss current bloodwork which is the

> scientific means Dr. G uses to make health decisions for your child. We

> also discuss the changes I have observed in behavior and functioning. The

> only thing that is different from a regular doctor's visit is your child

is

> not in the room. Think about it, when you go to the regular doc, how much

> treatment is based on bloodwork and parent observation?

>

> You still need to have bloodwork done about every six weeks, but I have

that

> done by a local lab. Dr. G writes the paperwork, and I don't even go

> through my local doctor. I take the labwork orders directly to a lab that

> is covered by insurance. The lab then faxes the results to both Dr. G and

> my local doc. If I wanted to I could get all my medications for my son

> filled by Dr. G. The local Target Pharmacy call Dr. G's office for

refills.

>

> If you are financially unable to pay for your airfare contact:

> Sharon Layeski

> E-mail Address: Aut2BMiracles@...

> She works hard to make this happen for all families.

>

> Now get that paperwork into Laurie at Dr. G's office. And make sure you

> have her put you on the cancellation list so you get seen sooner. The

> Office Phone and Address are:

>

> Dr. Goldberg Phone: 818-343-1010

> Avalar Medical Group

> 5620 Wilbur Ave. #318

> Tarzana, Ca. 91356

>

> Marcia Hinds

>

December 14, 2002

In a message dated 12/13/02 5:22:55 PM Central Standard Time,

lnovich@... writes:

> . He

> attends a pre-school where he has a 1:1 aide all day long and is in an

> ABA class. He has OT 3x a week. He used to have speech 3x a week as

> well, until the school fired his SLP. Now he has no therapy at all. What

> do I do? I do not know what the right course of action is. I spoke to

> the school and they do not think speech is so important. Please HELP

and others,

File a complaint citing the school district as noncompliant with the

childs IEP. Send a copy of the IEP with the speech therapy requirement

highlighted. Give the date when the speech therapy stopped and ask for

compensatory time starting immediately.

in Wi.

December 18, 2002

I am just a parent and hate giving advice that may boarder on legal

advise, but...

If you have a private SLP you are working with already (or know one

you could work with), you may want to send your district a certified

mail, return receipt requested letter stating they are out of

compliance with his IEP and that if they do not implement the

required services within 10 days of their receipt of your letter you

will furnish them privately and hold them accountable for the cost.

You might want to anme the SLP you would use and their hourly rate,

as well as travel expenses you would incurr getting your child there

and back.

I've been told by a lawyer that the " opps we couldn't find the staff "

arguement does not hold water. If you can find a private SLP, they

should be able to fidn one as well.

> Hi everyone

> I have a 4 year old son with Developmental dyspraxia and PDD. He

> attends a pre-school where he has a 1:1 aide all day long and is in

an

> ABA class. He has OT 3x a week. He used to have speech 3x a week as

> well, until the school fired his SLP. Now he has no therapy at all.

What

> do I do? I do not know what the right course of action is. I spoke

to

> the school and they do not think speech is so important. Please

HELP!!!

> Lnovich@m...

> Thanks Novich

December 23, 2002

<PRE>((((tess)))) heat for the old aches and ice for the new is what i have

been

told. i know everytime i try to do an exercise program it sends me into a

flare. just take one day at a time. kathy in il

December 26, 2002

Hi Tess,

I am sorry that you are having a flare-up. Do you have

some good pain meds that will help until after your

procedure? Try not to do too much of anything at one

time so as not to overstress your joints. Sometimes we

don't realize that our meds are really helping until

we have to stop taking them for reasons such as

surgery. I don't remember if you are on multiple meds

or not, but maybe after your procedure that would help

while you get everything back into working order.

Take care of yourself, my friend. Iris

--- tess_northwest@... wrote:

> Hi...My Remicade has been working for less time over

> the past few

> months. This time it stopped more abruptly at about

> 3 1/2 weeks. I

> have been on automatic-pilot the last week or so,

> and have a couple days

> to go, then will be stopping that.

>

> It's been a long time sice I've felt simila to whenI

> was first

> diagnosed. The other night my hips were hurting

> badly, and it took me

> quite awhile to be able to get ou of bed and move.

> My joints are either

> swollen or swelling, and it feels like every bone

> and joint has been hit

> hard and my muscles are lumpy, painful and weak. I

> can't eat anything

> dry or I choke.

>

> No Remicade til later in Fenruary after the

> gynecological stuff...no

> prednisone because they don't want high blood

> glucose or weight gain.

> The methocarbanol and vicodin take only the tiniest

> edge off. Do you

> all have an ideas what I can do to get through the

> next couple months?

> I am still doing range of motion & strengtening

> exercises, but they

> hurt. I am watching my food, and try to rest as I

> can.

>

> Love You All...

>

> Tess

>

February 5, 2003

Randi,

I hate to say this but your only choice might be to switch peds. It

isn't your doctors decision to make, whether you band ka or not.

You can try and tell him that you're not comfortable taking that kind

of gamble with your daughter. Ask him if he can give you a written

guarantee that her head WILL definitely round out. If he can't then

tell him you'd really appreciate a script for a cranial band/helmet.

The younger a baby is banded the better the correction and the

shorter the treatment time.

Good luck and please keep us posted.

> Can anyone help me? 's new doctor won't listen about her poor

> head. He told me yesterday that with pt for the tort her head

would

> eventually round out on its own. Hello, she is 8 months old, has

> been sitting since she was 4 mo. and is now trying to walk. If it

> was going to " round out " on its own, whouldn't it have done so

> already? Do you all know any literature I could look at and/or

give

> to him to show him that I am right? If we wait much longer it will

> be too late.

>

> Thanks, Randi (ERika's mom)

> in Arcola, IL

February 5, 2003

Randi:

I agree with about switching pediatricians. Sounds like yours

is very closed minded about the possiblility of banding & is

not taking your concerns seriously. Not acceptable.

If you don't want to switch peds., would he at the very least refer

you to a specialist to have her evaluated?

For literature, you could probably print information off of

www.cranialtech.com or www.plagiocephaly.org and

www.plagiocephaly.org/support .

I see you're in in IL, have you by chance been to the Oakbrook

Cranial Technology clinic there for a free evaluation? If you are

near there, I would suggest doing so, they'd give you their honest

opinion.

Sorry your ped. is being so difficult with you on this. He should

take your concerns seriously.

Good luck, please let us know what you do.

Debbie Abby's mom DOCGrad

MI

>

> > Can anyone help me? 's new doctor won't listen about her

poor

> > head. He told me yesterday that with pt for the tort her head

> would

> > eventually round out on its own. Hello, she is 8 months old, has

> > been sitting since she was 4 mo. and is now trying to walk. If

it

> > was going to " round out " on its own, whouldn't it have done so

> > already? Do you all know any literature I could look at and/or

> give

> > to him to show him that I am right? If we wait much longer it

will

> > be too late.

> >

> > Thanks, Randi (ERika's mom)

> > in Arcola, IL

February 7, 2003

...How commom is stomache bleeding with celebrex? I have been

feeling so good and yeaterday late morning started vomiting

blood...tried to get a same day appointment and they said come to ER

ASAP.....my blood levels are fine....they gave me phenegren,zantac,a

pain killer by IV as by the time I got there I had a killer

headache,the ER doc said he believed it was caused by the celebrex .I

know it can mess with you stomache and I thought it was suppose to be

easier than the others.....also I take nexium every day so I guess I

thought that would be extra protection....am off to my PCP today as

the ER doc wanted him in on this and thinks further testing needs to

be done......I just figured you would know how common this bleeding

is.....I will try to read the rest of the postings when I get

back....thanks ....Kathi in OK.....and Where is a?

February 7, 2003

Kathi,

I'm really sorry to hear this latest development for you. That sounds

awful. Darn!

Gastrointestinal events related to Celebrex (celecoxib) use are SUPPOSED

to be much lower than those with traditional NSAIDs, but the jury's

still out. I think that such events are less frequent with COX-2

inhibitors but probably not as uncommon as the preliminary studies would

lead you to believe.

There are lots of problems sorting the data out since COX-2s are often

used by people who have a history of GI problems and/or are on several

other medications. Once you go beyond two meds, it's very hard to tell

how the drugs are interacting.

December 26, 2002; " Study Questions Celebrex Use For Ulcers " :

http://www.intelihealth.com/IH/ihtIH/WSIHW000/333/7228/359542.html

Here's a fairly recent account from New Zealand:

" Can Patients Stomach COX-2 Inhibitors? " :

http://www.medsafe.govt.nz/Profs/PUarticles/COX2GI.htm

From Public Citizen - " Testimony before the FDA Arthritis Drugs Advisory

Committee on the Nonsteroidal Anti-Inflammatory Drugs Celecoxib and

Rofecoxib (HRG Publication #1555) "

http://www.citizen.org/publications/release.cfm?ID=6758 (February 2001)

An still older case study, but still interesting:

" Cyclooxygenase-2 Inhibitor Celecoxib: A Possible Cause of Gastropathy

and Hypoprothrombinemia " :

http://www.medscape.com/viewarticle/410637_1

I believe that patients on Celebrex and other drugs in its class still

need to be monitored closely for adverse reactions.

PS. a is very busy, but I hope she will be able to post again soon!

[ ] RE: Help

> ...How common is stomache bleeding with celebrex? I have been

> feeling so good and yeaterday late morning started vomiting

> blood...tried to get a same day appointment and they said come to ER

> ASAP.....my blood levels are fine....they gave me phenegren,zantac,a

> pain killer by IV as by the time I got there I had a killer

> headache,the ER doc said he believed it was caused by the celebrex .I

> know it can mess with you stomache and I thought it was suppose to be

> easier than the others.....also I take nexium every day so I guess I

> thought that would be extra protection....am off to my PCP today as

> the ER doc wanted him in on this and thinks further testing needs to

> be done......I just figured you would know how common this bleeding

> is.....I will try to read the rest of the postings when I get

> back....thanks ....Kathi in OK.....and Where is a?

February 13, 2003

When I tried the celebrex it felt like someone was ripping out my

stomach by its roots. Kinda like how a Sulphur (sp?) drug does me. So I

stopped it after a few days. I didn't wait to see how far it would go!

That was about a year ago.

Susie

Kathi wrote:

> ...How commom is stomache bleeding with celebrex? I have been