Need Advice

[Guest guest]

HI THERE SORRY I CANT GIVE YOU ANY ADVICE I AM NEW TO THIS AND NO VERY LITTLE ABOUT PLACIOCEPHALY, EACH TIME I HAVE BROUGHT MY DAUGHTER WHO IS 16 WKS TO A HEALTH PROFESSIONAL I GOT THE DOOR CLOSED ON MY FACE. NO ONE HERE IN NORTHERN IRELAND WANTS TO HELP SO UNFORTUNATELY I AM ALSO LOOKING FOR HELP IN THIS CHAT ROOM BUT I DO WISH YOU ALL THE LUCK IN THE WORLD AND HOPE EVERYTHING GOES WELL FOR YOU AND YOUR SON xolaurynmsu1 <modenbachl@...> wrote:

I am new to this chat room. My son's pediatrician suggested we put our son in his car seat to sleep in order to ease the symptoms of reflux. This worked great for the reflux but caused him to have a flat head. He is five months old and was seven weeks premature. I have a couple of questions. I have read that if you do some repositioning before the age of six months you can possibly correct this problem enough to avoid the helmet. 1. Has anybody had success with this? Do you have any suggestions? We purchased one of those Boppy Noggin Nests and use it whenever we have to lay him flat or put him in his stroller. We have been using his exersaucer and jumperoo a lot. I have also purchased one of those Sassy wedges for when he sleeps though it doesn't work very well. If you

could give me some more suggestions I would greatly appreciate it.2. Due to his prematurity do we have seven more weeks to our six month deadline?I have noticed a bit of a difference in the past couple of weeks since we have been made aware of the problem. I could just use a little advice so that I can do everything possible to help prevent our son from having the discomfort of a helmet. Thanks for your help,Lauryn

for Mobile Take with you! Check email on your mobile phone.

[Guest guest]

Our son was also almost 7 weeks premature and was just a little over

7 months old when he got his helmet. I think you will hear from

others that repositioning does help but it gets harder and harder as

the kids get older b/c they move around a lot and it's hard to force

them into one position - however this is usually more of a problem

if your child has torticollus which it doesn't sound like your child

has. I have heard from others here and from our orthotist that the

earlier you get the helmet the better and quicker the results,

however, I also don't see too much harm in waiting for a few more

weeks to see what results you get from re-positioning. In the

meantime, however, you may however want to get him evaluated to see

how bad the plagio is and also maybe get the ball rolling with ins,

etc incase you decide to band your child - that way you don't waste

time if you decide to band. Hope this helps a little - good luck.

toral

mom to Dillon, plagio and tort

Doc Band 6/30/05

--- In Plagiocephaly , " laurynmsu1 " <modenbachl@b...>

wrote:

> I am new to this chat room. My son's pediatrician suggested we

put

> our son in his car seat to sleep in order to ease the symptoms of

> reflux. This worked great for the reflux but caused him to have a

> flat head. He is five months old and was seven weeks premature.

I

> have a couple of questions.

>

> I have read that if you do some repositioning before the age of

six

> months you can possibly correct this problem enough to avoid the

> helmet.

>

> 1. Has anybody had success with this? Do you have any

suggestions?

> We purchased one of those Boppy Noggin Nests and use it whenever

we

> have to lay him flat or put him in his stroller. We have been

using

> his exersaucer and jumperoo a lot. I have also purchased one of

> those Sassy wedges for when he sleeps though it doesn't work very

> well. If you could give me some more suggestions I would greatly

> appreciate it.

>

> 2. Due to his prematurity do we have seven more weeks to our six

> month deadline?

>

> I have noticed a bit of a difference in the past couple of weeks

> since we have been made aware of the problem. I could just use a

> little advice so that I can do everything possible to help prevent

> our son from having the discomfort of a helmet.

>

> Thanks for your help,

> Lauryn

[Guest guest]

You didn't mention tummy time? Is he playing on his tummy? That is

very, very important, not only to help correct his plagio but also

to increase his neck, back, and stomach strength.

Natasha

--- In Plagiocephaly , " laurynmsu1 " <modenbachl@b...>

wrote:

> I am new to this chat room. My son's pediatrician suggested we

put

> our son in his car seat to sleep in order to ease the symptoms of

> reflux. This worked great for the reflux but caused him to have a

> flat head. He is five months old and was seven weeks premature.

I

> have a couple of questions.

>

> I have read that if you do some repositioning before the age of

six

> months you can possibly correct this problem enough to avoid the

> helmet.

>

> 1. Has anybody had success with this? Do you have any

suggestions?

> We purchased one of those Boppy Noggin Nests and use it whenever

we

> have to lay him flat or put him in his stroller. We have been

using

> his exersaucer and jumperoo a lot. I have also purchased one of

> those Sassy wedges for when he sleeps though it doesn't work very

> well. If you could give me some more suggestions I would greatly

> appreciate it.

>

> 2. Due to his prematurity do we have seven more weeks to our six

> month deadline?

>

> I have noticed a bit of a difference in the past couple of weeks

> since we have been made aware of the problem. I could just use a

> little advice so that I can do everything possible to help prevent

> our son from having the discomfort of a helmet.

>

> Thanks for your help,

> Lauryn

[Guest guest]

You didn't mention tummy time? Is he playing on his tummy? That is

very, very important, not only to help correct his plagio but also

to increase his neck, back, and stomach strength.

Natasha

--- In Plagiocephaly , " laurynmsu1 " <modenbachl@b...>

wrote:

> I am new to this chat room. My son's pediatrician suggested we

put

> our son in his car seat to sleep in order to ease the symptoms of

> reflux. This worked great for the reflux but caused him to have a

> flat head. He is five months old and was seven weeks premature.

I

> have a couple of questions.

>

> I have read that if you do some repositioning before the age of

six

> months you can possibly correct this problem enough to avoid the

> helmet.

>

> 1. Has anybody had success with this? Do you have any

suggestions?

> We purchased one of those Boppy Noggin Nests and use it whenever

we

> have to lay him flat or put him in his stroller. We have been

using

> his exersaucer and jumperoo a lot. I have also purchased one of

> those Sassy wedges for when he sleeps though it doesn't work very

> well. If you could give me some more suggestions I would greatly

> appreciate it.

>

> 2. Due to his prematurity do we have seven more weeks to our six

> month deadline?

>

> I have noticed a bit of a difference in the past couple of weeks

> since we have been made aware of the problem. I could just use a

> little advice so that I can do everything possible to help prevent

> our son from having the discomfort of a helmet.

>

> Thanks for your help,

> Lauryn

[Guest guest]

Is this OT at school or a private therapist?

[Guest guest]

Two things: if she claims she did an eval, then insist you want a

copy of the report. If there is no report, then she didn't evaluate

him. If the evaluation was not in sufficient depth then you can

appeal based on what was not covered.

AND, have you tried getting your case manager on your side? S/he may

know the SLP and agree with you that there is something funny going

on. That might help.

Good luck, Fiona

[Guest guest]

I called the billing department to ask about the Eval on the bill.

That person spoke to the director and they can't modify the bill

because it has already been paid by EI and my insurance. She also

told me it isn't an evaluation, but that is what they call the first

visit.

I also spoke to my coordinator and she said she will speak to her boss

later this afternoon to see if they can get around that eval.

Otherwise she said I will have to pay for the new evaluation.

How do I appeal an evaluation that was billed and paid for already? Do

I have to go above my coordinator and if so who would I speak to?

Thanks

Tina

>

> Two things: if she claims she did an eval, then insist you want a

> copy of the report. If there is no report, then she didn't evaluate

> him. If the evaluation was not in sufficient depth then you can

> appeal based on what was not covered.

>

> AND, have you tried getting your case manager on your side? S/he may

> know the SLP and agree with you that there is something funny going

> on. That might help.

>

> Good luck, Fiona

>

[Guest guest]

RALPH.... The tests to be done is the full panel for RA. That will tell

you where you stand every few months in regard to the treatment. For example

the test for imflammation and my RA factor were the last to go into normal.

This will tell you how close you are to remission or if you are truly in

remission. My doc tested every month, but many test every few months.

Acidophilus is an absolute must. Although as antibiotics go Minocin is

very selective about what bacteria it effects, it still wipes out some

beneficial bacteria needed in the digestive tract. I use two different types

(brands) of acidophilus. I have found for myself that when I do not get enough

acidophilus I get a bit gassy. Increasing my acidophilus eliminates this

embarrassing problem.

I prefer the time released Minocin to anything else. That does not mean

that some people have not done well on doxy or generic minocin. I just

found for myself, when I tried to switch to minocycline, I came out of

remission.

Minocin just works better for me.

The origional protocol did minocin on mon-wed-fri. My doctor did 100 mg

twice a day everyday!!! He felt that most people would not have the

patience to wait one to four years to see improvement on the slow but steady

protocol. I bit the bullet and was glad for such a heavy dose, but I have a

high

pain threshold and with a few pain pills to get me through the worst of it, I

went into remission quite fast...6 months. Obviously, if you are really sick,

are having terrible pain all the time, and your bloodwork is really out of

sight....the easier three day week might be better. This is an individual

choice, and most doctors prefer one or the other because its what they are used

to. Many people here are on an everyday protocol, others are on the three

day week. I would up it to the max you can tolerate without ending up flat on

your back in bed. Just my opinion. best of lucsk. Martha

[Guest guest]

,

I've been taking methotrexate for lupus for about

1-1/2 months now, it definitely is starting to help.

Did your doc try you on injectable methotrexate? I

got really sick from the oral and switched to the

injectable form, which helped some. Then, my doc

upped my folic acid from 1 mg/day to 5 mg/day, and

that all but took care of the nausea problems I'd been

having. It still feels a bit creepy to inject myself

once a week, but I believe it's worth it.

You're wise to try to avoid prednisone. Yes, it helps

a lot, but the weight gain and other side-effects are

nasty.

About finding a rheumotologist--have you tried a large

hospital in your area, maybe even a teaching hospital?

Are you near any large, out-of-state cities (e.g.,

St. Louis)?

Good luck!

__________________________________________________

[Guest guest]

I keep reading and hearing about prednisone " causing " weight gain. It

doesn't do that, only increase your hunger. If you can control your eating

habits, it shouldn't do more than cause your face round. I've been taking it

for over 16years and have had no side-effects from it. Yes, my face plumped

out and I gained about 15 pounds, but that was from my inability to

exercise. But, it did help me have a better life in the early years. One of

my doctors said it might cause a stroke, but that could be caused by the

double cheeseburger I had yesterday. The problem I'm having is that I

can't get off of it yet. I droped to about half my normal dosage, but it

caused inflammation in my lower spine and pinched my sciatic nerve, so I had

to go back up. Now, it's not much of a problem again, but I still have the

small problem with that nerve that's more than 5 years old. It's quality of

life, NOT quantity of life!! Anyhow, that's my 2 1/2 cents.

Dennis

Re: [ ] need advice

> ,

>

> I've been taking methotrexate for lupus for about

> 1-1/2 months now, it definitely is starting to help.

> Did your doc try you on injectable methotrexate? I

> got really sick from the oral and switched to the

> injectable form, which helped some. Then, my doc

> upped my folic acid from 1 mg/day to 5 mg/day, and

> that all but took care of the nausea problems I'd been

> having. It still feels a bit creepy to inject myself

> once a week, but I believe it's worth it.

>

> You're wise to try to avoid prednisone. Yes, it helps

> a lot, but the weight gain and other side-effects are

> nasty.

>

> About finding a rheumotologist--have you tried a large

> hospital in your area, maybe even a teaching hospital?

> Are you near any large, out-of-state cities (e.g.,

> St. Louis)?

>

> Good luck!

>

>

[Guest guest]

, thank you so much for responding to my questions. My doc hasn't tried the

injectable methotrxate, I just don't know if i could give myself a shot. I guess

you have to do what you have to do though. I will mention it to her tonight.

Also, I just take 1 mg of folic acid. We do have a teaching hospital, University

of Kentucky Med Center, but they won't see me either. I guess I could have her

check out Tenn. and Ohio but I'm usually so sick that I can't travel. Well, I

really should stop whining, lol, Thank you so much for talking to me.

Re: [ ] need advice

,

I've been taking methotrexate for lupus for about

1-1/2 months now, it definitely is starting to help.

Did your doc try you on injectable methotrexate? I

got really sick from the oral and switched to the

injectable form, which helped some. Then, my doc

upped my folic acid from 1 mg/day to 5 mg/day, and

that all but took care of the nausea problems I'd been

having. It still feels a bit creepy to inject myself

once a week, but I believe it's worth it.

You're wise to try to avoid prednisone. Yes, it helps

a lot, but the weight gain and other side-effects are

nasty.

About finding a rheumotologist--have you tried a large

hospital in your area, maybe even a teaching hospital?

Are you near any large, out-of-state cities (e.g.,

St. Louis)?

Good luck!

__________________________________________________

[Guest guest]

My doc had me on injectable that I put into orange juice and drank it. I was

on 4 cc, but when I went up to 8cc, I injected it. If you start doing that,

get a syringe with a 29 needle. You can almost not feel it going in. A part

of the secret to giving your own shot is to pinch up a good amount of flesh

and squeeze it hard, then slip it in. That works for me.

Dennis

Re: [ ] need advice

>

>

> ,

>

> I've been taking methotrexate for lupus for about

> 1-1/2 months now, it definitely is starting to help.

> Did your doc try you on injectable methotrexate? I

> got really sick from the oral and switched to the

> injectable form, which helped some. Then, my doc

> upped my folic acid from 1 mg/day to 5 mg/day, and

> that all but took care of the nausea problems I'd been

> having. It still feels a bit creepy to inject myself

> once a week, but I believe it's worth it.

>

> You're wise to try to avoid prednisone. Yes, it helps

> a lot, but the weight gain and other side-effects are

> nasty.

>

> About finding a rheumotologist--have you tried a large

> hospital in your area, maybe even a teaching hospital?

> Are you near any large, out-of-state cities (e.g.,

> St. Louis)?

>

> Good luck!

>

>

[Guest guest]

Prednisone can cause water retention, therefore indeed causing that type of

weight gain.

Re: [ ] need advice

> ,

>

> I've been taking methotrexate for lupus for about

> 1-1/2 months now, it definitely is starting to help.

> Did your doc try you on injectable methotrexate? I

> got really sick from the oral and switched to the

> injectable form, which helped some. Then, my doc

> upped my folic acid from 1 mg/day to 5 mg/day, and

> that all but took care of the nausea problems I'd been

> having. It still feels a bit creepy to inject myself

> once a week, but I believe it's worth it.

>

> You're wise to try to avoid prednisone. Yes, it helps

> a lot, but the weight gain and other side-effects are

> nasty.

>

> About finding a rheumotologist--have you tried a large

> hospital in your area, maybe even a teaching hospital?

> Are you near any large, out-of-state cities (e.g.,

> St. Louis)?

>

> Good luck!

>

>

[Guest guest]

Hadn't thought of that!

Dennis

Re: [ ] need advice

>

>

> > ,

> >

> > I've been taking methotrexate for lupus for about

> > 1-1/2 months now, it definitely is starting to help.

> > Did your doc try you on injectable methotrexate? I

> > got really sick from the oral and switched to the

> > injectable form, which helped some. Then, my doc

> > upped my folic acid from 1 mg/day to 5 mg/day, and

> > that all but took care of the nausea problems I'd been

> > having. It still feels a bit creepy to inject myself

> > once a week, but I believe it's worth it.

> >

> > You're wise to try to avoid prednisone. Yes, it helps

> > a lot, but the weight gain and other side-effects are

> > nasty.

> >

> > About finding a rheumotologist--have you tried a large

> > hospital in your area, maybe even a teaching hospital?

> > Are you near any large, out-of-state cities (e.g.,

> > St. Louis)?

> >

> > Good luck!

> >

> >

[Guest guest]

Dennis, thank you for the advice. I talked to my doc about it tonight and she

said she would look into it. She is just a reg doc so she doesn't really know

alot about the injectable. She gave me a steroid shot to try to get me thru the

next few days, until she can talk to her friend in another state that is a

rheumy. I have never had any experience with steroids of any kind. Do you have

any info on that? I hate to be a pain but I don't know anyone personally that

has any experience with this disease. Thanks for talking to me,

Re: [ ] need advice

>

>

> ,

>

> I've been taking methotrexate for lupus for about

> 1-1/2 months now, it definitely is starting to help.

> Did your doc try you on injectable methotrexate? I

> got really sick from the oral and switched to the

> injectable form, which helped some. Then, my doc

> upped my folic acid from 1 mg/day to 5 mg/day, and

> that all but took care of the nausea problems I'd been

> having. It still feels a bit creepy to inject myself

> once a week, but I believe it's worth it.

>

> You're wise to try to avoid prednisone. Yes, it helps

> a lot, but the weight gain and other side-effects are

> nasty.

>

> About finding a rheumotologist--have you tried a large

> hospital in your area, maybe even a teaching hospital?

> Are you near any large, out-of-state cities (e.g.,

> St. Louis)?

>

> Good luck!

>

>

[Guest guest]

I was told that at or above 8cc I would have to inject it, it won't do as

well at that high level by mouth. That wasn't a problem for me because I'm

ready to try any reasonable plan to see if it works at all. When I went to

my primary doc a couple of months ago, he told me I would live for another

30 years. My reaction was that if I have to suffer this pain for that long,

I'd rather get it over with earlier. I'm supposed to see a pain doc the end

of next month.

As for the prednisone, when my doc (not a Rheumy) first gave it to me, the

relief was so sudden that I asked him why we waited this long to give it to

me. It took the major pain away instantly (almost), and that was when I was

46 and first suffering from it. I'll be 62 in a couple of months and still

taking the same amount I started with, 5mg twice a day. I don't take much

stock in side-effects. They're like not wanting to ride in a plane because

you KNOW it will crash! It doesn't happen. When I was in the hospital with

pneumonia last January, I was asked to participate in a study of a new med,

so I said sure I will. The next morning I had a tickle in my throat, so it

was documented as a possible side-effect, so now if you read the warning on

that med, you will see that as a possible side-effect. It turned out that it

had nothing to do with that med, but it will be listed anyhow. It's good to

be educated about side-effects, but not all of them are real, just something

that happened. , if the pain is bad enough, take the prednisone. You

can stop it any time you feel like it or adjust the level down if you want.

Most side-effects show up early in the program, so you can just stop taking

them without 'weaning' off them. You are in control, the doctor is just

handing you possible meds and you're in control of your life!

Dennis

Re: [ ] need advice

> >

> >

> > ,

> >

> > I've been taking methotrexate for lupus for about

> > 1-1/2 months now, it definitely is starting to help.

> > Did your doc try you on injectable methotrexate? I

> > got really sick from the oral and switched to the

> > injectable form, which helped some. Then, my doc

> > upped my folic acid from 1 mg/day to 5 mg/day, and

> > that all but took care of the nausea problems I'd been

> > having. It still feels a bit creepy to inject myself

> > once a week, but I believe it's worth it.

> >

> > You're wise to try to avoid prednisone. Yes, it helps

> > a lot, but the weight gain and other side-effects are

> > nasty.

> >

> > About finding a rheumotologist--have you tried a large

> > hospital in your area, maybe even a teaching hospital?

> > Are you near any large, out-of-state cities (e.g.,

> > St. Louis)?

> >

> > Good luck!

> >

> >

[Guest guest]

Just to clarify: it may be difficult to discontinue prednisone if it is

taken daily for more than a few weeks. Prednisone should never be

discontinued abruptly without the consent of one's physician.

Not an MD

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

Re: [ ] need advice

>I was told that at or above 8cc I would have to inject it, it won't do as

> well at that high level by mouth. That wasn't a problem for me because I'm

> ready to try any reasonable plan to see if it works at all. When I went to

> my primary doc a couple of months ago, he told me I would live for another

> 30 years. My reaction was that if I have to suffer this pain for that

> long,

> I'd rather get it over with earlier. I'm supposed to see a pain doc the

> end

> of next month.

>

> As for the prednisone, when my doc (not a Rheumy) first gave it to me, the

> relief was so sudden that I asked him why we waited this long to give it

> to

> me. It took the major pain away instantly (almost), and that was when I

> was

> 46 and first suffering from it. I'll be 62 in a couple of months and still

> taking the same amount I started with, 5mg twice a day. I don't take much

> stock in side-effects. They're like not wanting to ride in a plane because

> you KNOW it will crash! It doesn't happen. When I was in the hospital with

> pneumonia last January, I was asked to participate in a study of a new

> med,

> so I said sure I will. The next morning I had a tickle in my throat, so it

> was documented as a possible side-effect, so now if you read the warning

> on

> that med, you will see that as a possible side-effect. It turned out that

> it

> had nothing to do with that med, but it will be listed anyhow. It's good

> to

> be educated about side-effects, but not all of them are real, just

> something

> that happened. , if the pain is bad enough, take the prednisone.

> You

> can stop it any time you feel like it or adjust the level down if you

> want.

> Most side-effects show up early in the program, so you can just stop

> taking

> them without 'weaning' off them. You are in control, the doctor is just

> handing you possible meds and you're in control of your life!

>

> Dennis

[Guest guest]

As it has been suggested, , since MTX was effective for you, I would

ask about injectable MTX. Many people who can't tolerate MTX orally find

that the injections don't produce as many side effects.

Most manufacturers have patient assistance programs. Here is a link related

to that:

http://www.phrma.org/

Another way to get care and medications is to enroll in a clinical trial.

http://www.clinicaltrials.gov

Not an MD

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] need advice

> Hi, my name is and i'm married with 3 sons. I was diagnosed with

> RA about 2 years ago. My reg. doc has tried to get me referred to a

> rheumatologist, but there are none in the state of Kentucky that will

> accept my insurance. I am disabled and have medicare and medicaid. So my

> reg. doc has tried me on sulfasalazine, which didn't work and methotrexate

> pills. the methotrexate worked really well for my arthritis, but tore my

> stomach up so bad that I stayed sick all of the time. I had to stop taking

> it for that reason. Now my RA is alot worse because I haven't been taking

> anything. I'm afraid of prednisone because I have heard that it causes

> weight gain and I am already 100 pds. overweight because of meds for other

> illnesses and a bad back that keeps me from being able to be very active.

> My reg doc mentioned plaquenil and I'm going to see her tonight. Does

> anyone know anything about this med and it's side affects. Does anyone

> have any suggestions about meds or how I can get a rheumatologist to see

> me? I am desperate. My RA affects me worse in my hands, knees and ankles.

> I have gotten to the point where I Can't do stairs. I also feel like there

> is a huge weight on my chest all of the time, which is scary. I know next

> to nothing about this disease except that I just turned 37 yrs. old and

> feel like I am 100. I would appreciate any responses. I truly need help.

> Thank You

[Guest guest]

, I don't know how close you are to the Nashville, Tn. but there are

several rheumatologists in this area. The one I go to is in the St.

hospital area and I have been very pleased with him. I went to one in the

Centennial Hospital area that I did not care for at all but I know a couple of

other doctors in the same group are good. If Nashville is convenient and you

need more information just e-mail me and I would be glad to pass on info. I'm

sure Vanderbilt has several too but I don't do Vanderbilt.

<melissahancock@...> wrote: , thank you so much for

responding to my questions. My doc hasn't tried the injectable methotrxate, I

just don't know if i could give myself a shot. I guess you have to do what you

have to do though. I will ment Iion it to her tonight. Also, I just take 1 mg

of folic acid. We do have a teaching hospital, University of Kentucky Med

Center, but they won't see me either. I guess I could have her check out Tenn.

and Ohio but I'm usually so sick that I can't travel. Well, I really should

stop whining, lol, Thank you so much for talking to me.

Re: [ ] need advice

,

I've been taking methotrexate for lupus for about

1-1/2 months now, it definitely is starting to help.

Did your doc try you on injectable methotrexate? I

got really sick from the oral and switched to the

injectable form, which helped some. Then, my doc

upped my folic acid from 1 mg/day to 5 mg/day, and

that all but took care of the nausea problems I'd been

having. It still feels a bit creepy to inject myself

once a week, but I believe it's worth it.

You're wise to try to avoid prednisone. Yes, it helps

a lot, but the weight gain and other side-effects are

nasty.

About finding a rheumotologist--have you tried a large

hospital in your area, maybe even a teaching hospital?

Are you near any large, out-of-state cities (e.g.,

St. Louis)?

Good luck!

__________________________________________________

[Guest guest]

Hi :

Welcome to the group. Has your doctor offered you

injectible Mtx - this would be easier on your stomach

and I did feel that it gave better results than the

oral Mtx. Also, Plaqueil was my first DMARD when I

was dx with RA 7 years ago. It worked really well for

me for aboub 2-1/2 years until the RA became more

aggressive, and I went on to other meds. I had no

side effects with Plaquenil; but you do have to go to

regular opthamologist appointments to keep check on

your retinas, because there is a very rare side effect

of retinal damage. I would give the Plaquenil a try,

IMO it's a good RA drug.

Kathe in CA

P.S. Prednisone will cause water retention, which will

show as weight gain, but if you watch your diet well

you should be okay. It did make me have the munchies,

but I tried to concentrate those munchies on apples

and carrots lol. It's a great drug as far as the pain

and inflammation is concerned, but I try not to take

it very much because of the effect it has on me

mentally. Certainly don't need any of that!

--- <melissahancock@...> wrote:

> Hi, my name is and i'm married with 3 sons.

> I was diagnosed with RA about 2 years ago. My reg.

> doc has tried to get me referred to a

> rheumatologist, but there are none in the state of

> Kentucky that will accept my insurance. I am

> disabled and have medicare and medicaid. So my reg.

> doc has tried me on sulfasalazine, which didn't work

> and methotrexate pills. the methotrexate worked

> really well for my arthritis, but tore my stomach up

> so bad that I stayed sick all of the time. I had to

> stop taking it for that reason. Now my RA is alot

> worse because I haven't been taking anything. I'm

> afraid of prednisone because I have heard that it

> causes weight gain and I am already 100 pds.

> overweight because of meds for other illnesses and a

> bad back that keeps me from being able to be very

> active. My reg doc mentioned plaquenil and I'm going

> to see her tonight. Does anyone know anything about

> this med and it's side affects. Does anyone have any

> suggestions about meds or how I can get a

> rheumatologist to see me? I am desperate. My RA

> affects me worse in my hands, knees and ankles. I

> have gotten to the point where I Can't do stairs. I

> also feel like there is a huge weight on my chest

> all of the time, which is scary. I know next to

> nothing about this disease except that I just turned

> 37 yrs. old and feel like I am 100. I would

> appreciate any responses. I truly need help.

> Thank You

>

> [Non-text portions of this message have been

> removed]

>

>

>

>

Kathe

" To ride a horse is to borrow freedom. "

__________________________________________________

[Guest guest]

Tina,

Don't know about the fish oil. About the epsom salts, maybe try

decreasing the amount and gradually stepping it up? How much are

you using in a bath? We use 2 cups in the bath (with 2 kids). They

seem to make my daughters a little hyper for only an hour or so, and

then they actually sleep better than normal (we do them about every

other day and can notice a difference). But I've heard that some

kids can be sensitive to them and have a hyper reaction. My friend

tried them with her son who has PDD and she tried only a Tablespoon

in his bath and he had a very strong reaction (so much that she's

never tried again). But I hear that having a strong reaction can be

a sign that it is really something that could help.

Hope this helps!

Kerri

In , " trmckenna1 "

<trmckenna1@...> wrote:

>

> I wrote this about a 1/2 hour ago, but I don't know if it went

> through before Landon turned off my computer.

>

> I have questions about fishoil and epsom salt baths.

>

> three weeks ago I took Landon off fishoil because i thought it was

> messing with his apetite. But a week later I had to put him back

on

> fishoil because he was such a mess. His apetite got better, then

> last week he had the flew for 3 days so he wasn't feeling well.

> Thursday he was over the flu symptoms but his apetite didn't come

> back. Yesterday I gave him a capsule after breakfast. He didn't

> eat lunch and he only ate about 4 or 5 bites of his dinner. Today

> he ate breakfast, I didn't give him his fishoil and he ate a good

> lunch. Has anyone else experienced this on fishoil? Is there

> another brand besides nordic natural that is equally good?

>

> Last Monday I started giving him epsom salt baths. They have done

> wonders for helping him be more talkative and he seems to be

calmer

> sensory wise, but he isn't sleep well now. And everyone knows how

> cranky a 2 1/2 year old can be when they are tired!! Has this

> happened to anyone with the baths? Any advice would be greatly

> appreciated. I am starting to feel like everything is helpful for

> speech has some bad side effect. I am starting to get very

> frustrated!

>

> Thanks

> Tina

>

[Guest guest]

Hi Kerri:

I have been doing 2 tsp a bath because i didn't want him to get

hyper before bed. He isn't hyper, he just isn't sleeping as long as

he was since I started and his nap is screwed up. The epsom salt is

the only thing that is new. He actually does very well with the

baths. That is why it so upseting if this is the thing that is

keeping from getting enough rest.

Tina

>

> Tina,

>

> Don't know about the fish oil. About the epsom salts, maybe try

> decreasing the amount and gradually stepping it up? How much are

> you using in a bath? We use 2 cups in the bath (with 2 kids).

They

> seem to make my daughters a little hyper for only an hour or so,

and

> then they actually sleep better than normal (we do them about

every

> other day and can notice a difference). But I've heard that some

> kids can be sensitive to them and have a hyper reaction. My

friend

> tried them with her son who has PDD and she tried only a

Tablespoon

> in his bath and he had a very strong reaction (so much that she's

> never tried again). But I hear that having a strong reaction can

be

> a sign that it is really something that could help.

>

> Hope this helps!

>

> Kerri

>

[Guest guest]

Hi Tina,

For the oils you really have to use them consistently to see the

effects. It's understandable stopping them due to the flu, but once

you put him back on you can 1/2 dosage what you were currently using

instead of stopping them since he was having positive results with

them. I once read that EFAs help stabilize an unhealthy appetite

but according to this one study they have no effect at all:

" CONCLUSION: Fish oil did not significantly influence appetite,

tiredness, nausea, well-being, caloric intake, nutritional status,

or function after 2 weeks compared with placebo in patients with

advanced cancer and loss of both weight and appetite. "

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_uids=1\

2506181 & dopt=Abstract

Even still, if you believe but are not sure if your child's appetite

has changed due to taking essential fatty acids (fish oils)

regardless of what the studies say - you can instead of stopping

them (again) reduce them to 1/2 dosage of what you were currently

using and let us know how that goes.

About the Epsom salt baths -here's the best archive we have on that

topic from W:

From: " kiddietalk " <kiddietalk@...>

Date: Sun Feb 12, 2006 10:38 pm

Subject: " W. " answer on epsom salts kiddietalk

We miss you W! Here's a long archive from her on how and why to

use epsom salts:

From: " merrywbee " <merrywbee@...>

Date: Mon Jan 19, 2004 4:28 pm

Subject: Epsom Salt Baths-- moderator approve? merrywbee

Epsom Salt Baths

Information compiled by Wetherby, with editing and research

information provided courtesy of Owens. This information may

be shared with families and professionals, but please do not use it

in a part of a larger document/paper without obtaining written

permission.

What are Epsom Salts?

Epsom Salts are the same thing as Magnesium Sulfate, which is a salt

made of only magnesium and sulphate (and maybe a little bit of

water). Magnesium is a positively charged ion, and it binds to

sulfate, which is a negatively charged ion. Sulfate is a sulphur

atom surrounded by four oxygen atoms.

You can buy them at your local drugstore or pharmacy or even in the

grocery store. They are usually located in larger bags near the

bandages or the foot care section (in a pinch, smaller containers can

be found in the laxative aisle, but it is cheaper to buy them in the

larger bags/cartons).

What is the anticipated effect from an Epsom Salt bath?

Epsom Salts have long been used to stimulate detoxification, reduce

inflammation to sore muscles, promote healthy circulation, and help

with relaxation and normalizing sleep patterns.

Most children respond to an ES bath by appearing happier, more

relaxed. Some parents report that their children are more

responsive, more " with it " . Some parents who give the bath in the

evenings report that their children are able to get to sleep easier,

and have a more normal sleep pattern.

Given over time, the ES baths may help reduce sensory integration

symptoms. Some of this effect may occur due to benefits of

detoxification, but it is much more likely to come from direct

effects on the nervous system.

Why do they work? And Why is sulfation important?

One benefit of the ES baths is linked to an enzyme system known as

phenolsulfotransferase or PST. Dr. Rosemary Waring researched this

and found that in 92% of the autistic children tested, PST was

functioning at below optimal levels. This enzyme, like all other

sulfotransferases, has to use a modified form of sulfate: not the

form it takes in the bathtub. This change occurs inside your cells

by adding the molecules adenosine and phosphate to sulfate before any

sulfotransferase enzyme can use it. The molecular additions are said

to turn sulfate into its " activated form " . If you think about it,

none of this can be happening in the bathtub: it is happening in

your body after sulfate is absorbed through the skin and after a

complicated interplay of enzymes. It is not going to happen

spontaneously, no matter how much sulfate you have around.

When PST has enough activated sulfate to use, it will then attach the

sulfate part of that molecule to molecules called phenols. In most

cases, adding sulfate sets up those molecules for excretion in the

urine, but it can actually activate other molecules.

When there is a deficiency of sulfate inside your cells, phenols may

build up. In the brain and nervous system this may interfere with

neurotransmitter function since many neurotransmitters are phenolic,

too. For instance, there is actually a form of PST called

catecholamine sulfotransferase or M-PST which acts on

neurotransmitters. Other sulfotransferases act on hormones and

proteins and carbohydrates of certain sorts.

Again, epsom salts are believed to help PST by providing the much-

needed

sulfate to the child's body, by being absorbed transdermally (through

the skin) during the bath. The body is full of other

sulfotransferases that need sulfate to be much more concentrated than

what PST likes. These other sulfotransferases, among other jobs,

help form the extracellular nets around certain neurons, and regulate

things like axon guidance and neurons sending out processes to make

connections.

The gastrointestinal system especially needs a lot of sulfate. A

diferrent sulfotransferase enzyme called TPST uses sulfate to

activate two major gut enzymes. In animal studies the GI system

takes as much sulfate out of the blood as the liver puts into the

blood, so epsom salts are likely to mostly nourish the gut and spare

the liver the job of making sulfate from scratch from the amino acid

cysteine.

But how does this produce neurological improvements?

Detoxification is only a little part of sulfate's job. Most of the

body's sulfate is used to form huge molecules that govern chemical

traffic at the cell surface. Many of these sulfated molecules find

their more enduring home in the area immediately around the cell

called the extracellular matrix. [Extracellular = outside the cell]

These sulfated molecules function in all cell types. However, in the

brain, this type of molecule has a very special role, providing

modulation, or something like a volume control. It does this by

forming a geometric net outside particular types of neurons.

The sulfate in these molecules is no longer in an ionic form, like

you see in epsom salts in the bathtub, but is part of highly

organized structures that will attract, bind and regulate many of the

ions that are involved in cell signalling before those ions even get

to the surface of neurons or to ion channels.

You haven't heard about this from your neurologist because research

on the

function of this type of molecule has been done mainly in the last

decade, and in the last year or two, especially. Even so, there are

pictures of these nets around neurons that were drawn by scientists

more than a hundred years ago before they knew what they were made

of. Nobody thought they did anything!

What seems particularly relevant is that the nets are abundant and

function in the auditory system, the somatosensory system, the

vestibular system, the cerebellum, and in almost half of the cranial

nerves. They even seem important for developing trunk strength.

You may recognize these systems as the parts of the nervous system

that are targeted by sensory integration therapy. Interestingly, the

nets won't form properly in the brain without two things happening at

the same time: adequate biochemical resources, and continued rapid

firing of the relevant nerves. This argues favorably for coupling

biochemical therapies that support this chemistry with the physical

and educational approaches that are also known to offer benefits to

these systems.

If you want to know more about the biochemical side of this, you can

read a

paper written by Owens who has studied the sulfated molecules

(called

GAGs) for seven years. Her paper reviewing this area is part of a

book that is sold by the Autism Research Unit in Sunderland: The

Proceedings of their 2001 conference in Durham, England. See

http://osiris.sunderland.ac.uk/autism/.

What are the potential long-term benefits of continued use?

After using epsom salts on a regular basis, children may have

improvements with language, behavior, mood, and physical skills.

What if my child gets agitated?

Very few children may seem more agitated after the initial bath, or

several baths later. It is not known why this happens, but it is easy

to deal with. Just cut back on the baths for a few days and then

begin again, but with a much smaller amount of ES-perhaps a teaspoon,

and work up the amount very slowly. Also, you may see if the child

reacts to magnesium by trying it in a different form orally.

Kirkman Laboratories " Guide To Intestinal Health " booklet discusses

how impaired sulfation process can lead to a decreased production of

peptides, and bile acids, which are important to digestive function,

and lead to problems with maldigestion and malabsorption. Sulfation

is also important to the intestinal lining. Over time, decreased

sulfation can allow small portions of the gut wall to be exposed,

creating the " Leaky Gut " which is suspect in allergies, asthma, and

other neurobehavioral disorders. Sulfate's relative absense from the

esophagus may be what makes reflux hurt so much.

Okay, I think we'll try the baths—what do I need and how much Epsom

Salt, and for how long?

The amount and frequency can vary from child to child. Some parents

prefer to use as much as 2 cups of ES in a bathtub of water, allowing

the child to be in the tub for around 20 minutes, on a daily basis.

Some parents prefer to do the baths every few days, some prefer every

week. As mentioned before, if your child is one of the rare few who

seem to get agitated by the bath, then simply cut back on the amount

of salt used (my son was one of these kids and we dropped back to a

teaspoon and worked up gradually to about ¼ to ½ a cup).

What are other ways to employ Epsom Salts for sulfation benefits?

Some parents prefer to mix the ES with water and keep it in a spray

bottle and spray their kids during the day. As it dries, it leaves a

white residue that you can leave on for more of a " timed-release "

effect if it is tolerated. Others have found ways to make ES oil or

lotion. Please join the Enzymes and Autism Group for recipes

on how to make it into an oil or lotion. Instead of a bath, some

parents give their child a foot soak while they are eating or doing

something else. Kirkman Laboratories at www.kirkmanlabs.com sells

an Epsom Salt cream that can be applied 1 to 3 times a day. It does

not leave a residue. I have been told that there are other ES

creams out there, but I haven't seen them in any stores yet. If

someone knows of another source, please add it to this file.

Q: I gave my child an epsom salt bath, and s/he seemed more hyper

and/or emotional afterwards. Is this related to the bath? Why would

my child react this way instead of having the " expected " results?

I think the trick here, which is important to know about, is that you

need to start slowly when introducing a supplement of something for

which you have been deficient a long time, and then slowly work up to

more. This is because, unlike drugs, where the quantity of a dose is

set by the doctor trying to obtain a blood level of something FOREIGN

to the body, introducing a supplement of something the body uses

every day works in a whole different way, and this can be generalized

to lots of things. I'll explain why.

Most chemical reactions happen inside cells after substances have

crossed over the cell's outer membrane. For things cells use

everyday, they have specific transporters and receptors that are

expressed on the cell surface in the quantity that is appropriate to

assure an appropriate supply to that cell type. Not all cells like

the same quantity. When everything works right, the inside of the

cell gets the appropriate quantity of what it needs of that

substance. The cell wants not too much and not too little and it

knows how to adjust the availability of that substance to the inside

of the cell when the supply outside the cell changes.

If the supply of something the body uses up every day has been low

for

awhile, the cell will upregulate the transporter or receptor that is

specific for that substance. Upregulation means it will put more of

these working molecules on the cell surface in order to increase the

odds that the substance will find its receptor or transporter.

When the supply has been high for a long time, the cell will also cut

back the quantity of the receptor or transporter on the cell surface.

Cells are very fluid like that: changing and adjusting constantly:

not like a machine at all! Your car doesn't increase the gas caps

when its fuel supply is low, but it doesn't have to gets its gas from

the passing parade by chance and kinetics...

So, if you have been deficient in sulfate for a long time, your cells

would have upregulated the transporters to make much of little. All

over the body, receptors that need sulfated ligands might have been

upregulated as well, trying to increase their signal or supply.

If you suddenly increase the quantity of sulfate that approaches the

cell by several fold, you can get too intense a signal, and that can

be overwhelming. That is why you should start slowly. This gives your

body's cells a chance to readjust to the new level they will be

seeing. We're not trying to overdo that level, but just to return it

to something normal.

Remember that cells are accustomed to biological rhythms that change

the

quantities of nutrients that cells see. This includes feeding

schedules and sleep. Cells don't make these adjustments on whim or

very quickly, for they know there will be long periods of time when

the supply gets lower just because it has been a long time since you

ate something. I would guess, for that reason, that cells tend to

adjust to conditions that may continue for at least a day or two.

The way this biology works gives me the suspicion that the children

who get

the most hyper after their first epsom salts bath or baths may be the

children who have been the most deficient of this substance, and have

receptors and transporters dialed WAY up.

If you are deficient in supply, even when you have receptors or

transporters expressed at extremely high quantity, you still might be

low in quantity for the function you need. The increase of receptors

or transporters will help, but it isn't much of a solution long term.

If you get exposed to something that requires a lot of sulfate for

your body to detoxify (like phenols in fumes or foods or drugs), the

level of sulfate available for NORMAL functions will be hurting

temporarily as your body tries to recover from this demand. The loss

of the function of other molecules that use sulfate for normal

function is likely what is producing symptoms: not your body feeling

toxic as if it had just been " burned " by the substance your body was

trying to detoxify. That sort of injury might take longer and it

would probably be more subtle, anyway. If you are having neurological

reactions, you are probably seeing an adjustment in the neurological

chemistry which is feeling shorted and may be overwhelmed with sudden

change.

Of course, you really need an appropriate supply of sulfate, but the

story of HOW the supply got low in the first place can be very

different from child to child, and involve organs like the kidneys,

the liver and the GI tract and systems like the immune system.

Anyway, as an example of this sort of mechanism with an entirely

different substance, I'll tell you a little about the secretin story.

This sort of receptor-quantity issue was suspected to be happening in

the children with autism who were given IV secretin. In response to

the same dose that had a predictable response in normal people, those

with autism instead put out huge quantities of pancreatic fluid.

Their response was intense on the very same dose that other patients

were getting without experiencing this overexuberant response.

Why? The sudden increase in secretin was more of a surprise for the

bodies

of autistic children than it was for the other children with GI

problems being tested. The pancreas was OVER responsive to secretin

probably because this was the first good supply of secretin that it

had gotten in a long time. Scientists suspected that the amount of

secretin these children had been producing on their own had been low

for a long time. I hope all this makes sense. Your body makes

secretin, but it also makes sulfate from the amino acids cysteine and

methionine. There may be a reason this isn't happening appropriately.

I've heard of parents starting with as little as a teaspoon in the

bathwater and working up. You can also apply the solution topically,

and can control the quantity by how much surface of the skin you

cover. The half-life of sulfate in the blood is 4-9 hours.

At any rate, please do not interpret this [emotional/hyper reaction]

to mean the epsom salts were the wrong thing...it may mean exactly

the opposite! Normal people do not have any response to epsom salts

baths except maybe to feel relaxed later! They don't get hyper or

emotional…

If you have already tried reducing the quantity of epsom salts

drastically and slowly increasing the quantity, and it doesn't work

to reduce this hyper or emotional response, I'd be glad to talk to

you offlist about what else it might mean.

Anyway, I hope this helps. You've just got to think like a cell

thinks!

Owens

~~~~~~~~~~~~end of archive

=====

[Guest guest]

He has been on the ProEFA since September. I have taken him off

twice. Once for the Neuro visit and then three weeks ago because he

just wasn't eating enough. I don't know why his appetite has

changed in the last couple of months. For some reason he eats

better when he is not on the fishoil. I have even tried to give it

to him every other day and there is a difference. And it is time to

bump up his dose. It is just frustrating. I will keep him on the

oils and try adjusting his meals.

>

> Hi Tina,

>

> For the oils you really have to use them consistently to see the

> effects. It's understandable stopping them due to the flu, but

once

> you put him back on you can 1/2 dosage what you were currently

using

> instead of stopping them since he was having positive results with

> them. I once read that EFAs help stabilize an unhealthy appetite

> but according to this one study they have no effect at all:

>

> " CONCLUSION: Fish oil did not significantly influence appetite,

> tiredness, nausea, well-being, caloric intake, nutritional status,

> or function after 2 weeks compared with placebo in patients with

> advanced cancer and loss of both weight and appetite. "

> http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?

cmd=Retrieve & db=PubMed & list_uids=12506181 & dopt=Abstract

>

> Even still, if you believe but are not sure if your child's

appetite

> has changed due to taking essential fatty acids (fish oils)

> regardless of what the studies say - you can instead of stopping

> them (again) reduce them to 1/2 dosage of what you were currently

> using and let us know how that goes.

>

> About the Epsom salt baths -here's the best archive we have on

that

> topic from W:

> =====

>

[Guest guest]

Tina,

Maybe they make his stomach a little upset? I can't remember if you

said you'd tried the EFAs at bedtime. My girls usually end up

getting them pretty close to bedtime - not really on purpose - and

it doesn't seem to bother them in any way. You could try that.

Nordic Naturals makes lots of other kinds (I just ordered some Omega

3-6-9 NOT junior today and it ends up being a better price than Pro-

EFA and a very similar formulation), and other companies make them

too. I've heard of people on this site using Coromega and Omega-

Brite. I don't know if it would help you're problem, but it's worth

a shot. It seems like you should be able to find a way to bypass

the side effects.

And about the sleep issues you're having...does he still take a

nap? If so, maybe he's ready to give it up. Meg gave up her nap at

around 27 months - a missed those naps, but at least I didn't have

to spend half of my afternoon trying to get her to sleep! She went

from going to bed at around 10:00, waking at 8:00 and taking a 3-

hour afternoon nap to going to bad by 8:00. waking at 8:00 and no

nap.

Kerri

> >

> > Hi Tina,

> >

> > For the oils you really have to use them consistently to see the

> > effects. It's understandable stopping them due to the flu, but

> once

> > you put him back on you can 1/2 dosage what you were currently

> using

> > instead of stopping them since he was having positive results

with

> > them. I once read that EFAs help stabilize an unhealthy

appetite

> > but according to this one study they have no effect at all:

> >

> > " CONCLUSION: Fish oil did not significantly influence appetite,

> > tiredness, nausea, well-being, caloric intake, nutritional

status,

> > or function after 2 weeks compared with placebo in patients with

> > advanced cancer and loss of both weight and appetite. "

> > http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?

> cmd=Retrieve & db=PubMed & list_uids=12506181 & dopt=Abstract

> >

> > Even still, if you believe but are not sure if your child's

> appetite

> > has changed due to taking essential fatty acids (fish oils)

> > regardless of what the studies say - you can instead of stopping

> > them (again) reduce them to 1/2 dosage of what you were

currently

> > using and let us know how that goes.

> >

> > About the Epsom salt baths -here's the best archive we have on

> that

> > topic from W:

> > =====

> >