new to the group

[Guest guest]

Hello everyone, I am new to this group and have to admit not really

thrilled to be here but am happy to find fellow sufferers who have info

about this dreadful illness. About a month ago, literally overnight I

developed RA. After seeing my doc and then a specialist he took 12 vials of

blood and put me on 5 mg of prednisone. My next appt isn't for 2 months. I

have another illness that is very serious and life threatening as well but I

guess God thought I needed an extra burden. My first question to all you

folks is how do you deal with the chronic pain?????? I can't seem to make

any plans from day to day because I don't even know if I can walk the next

morning or even drive. My pain is in my hands , feet, knees etc. So, it's

really hard to drive too. Is anyone on pain meds? Is prednisone a good drug

for this??? I'm sorry for being so long winded but this is very new to me

and a little frightening. Thank you for any help:-)

Suzy in Tenn

-------Original Message-------

[Guest guest]

Welcome, Suzy! I'm very sorry about your RA diagnosis and that you are

experiencing so much pain. Yes, many people here take various kinds of

medication for pain.

Please contact your doctors for help. You shouldn't have to wait 2

months before your pain in sufficiently treated. Describe exactly how

your life is being adversely affected by the pain.

Prednisone is often used to treat early RA while you are waiting for

slower-acting drugs to start working. It works very well to calm

inflammation down and help lessen the pain, but it should only be used

for a brief period. It is easy to become physically dependent on it and

the long-term side effects can be very serious.

You are on a very low dose. Maybe that's why you're still having so much

pain. Is it possible that your doctors are uncertain about your

diagnosis and they are waiting to get the labs back and see how you do

on the prednisone?

a, our group owner and lead moderator, has created a Web site that

is full of very good information on RA:

http://rheumatoid.arthritis.freehosting.net/

http://rheumatoid.arthritis.freehosting.net/pain.html

http://rheumatoid.arthritis.freehosting.net/drugs.html

[ ] Re: New to the group

> Hello everyone, I am new to this group and have to admit not really

> thrilled to be here but am happy to find fellow sufferers who have

info

> about this dreadful illness. About a month ago, literally overnight I

> developed RA. After seeing my doc and then a specialist he took 12

vials of

> blood and put me on 5 mg of prednisone. My next appt isn't for 2

months. I

> have another illness that is very serious and life threatening as well

but I

> guess God thought I needed an extra burden. My first question to all

you

> folks is how do you deal with the chronic pain?????? I can't seem to

make

> any plans from day to day because I don't even know if I can walk the

next

> morning or even drive. My pain is in my hands , feet, knees etc. So,

it's

> really hard to drive too. Is anyone on pain meds? Is prednisone a good

drug

> for this??? I'm sorry for being so long winded but this is very new to

me

> and a little frightening. Thank you for any help:-)

>

> Suzy in Tenn

[Guest guest]

I think the holidays may have something to do with our group being quiet.

I have less to do this Christmas than ever before and I still can't get it

together LOL! I think I'll sleep the entire month of January.

a

> Welcome, Janet!

>

> Yes, sharing of all kinds goes on here. People in the group have been on

> the quiet side lately, but post as often as you like and, hopefully,

> you'll find the kind of support or friendship you're looking for.

>

> I hope you like it here.

>

>

>

[Guest guest]

Hi Janice,

I hope the Canadians in the group will answer you as there are several.

This doctor in Canada is very experienced with antibiotic therapy:

Armstrong, M.D. B.Sc.

Environmental Medicine,

3364 Carling Avenue,

Nepean, Ontario K2H 5A8.

P: 613-721-9800

F: 613-721-9314

We also have other doctors listed if you want to let us know

whereabouts in Canada you live.

The statement by your rheumatologist that 'it is not a recommended

protocol in Canada' is a very strange one. Double blind trials have

been held with this therapy so, by the medical profession's own rules,

this is an accepted therapy - see rheumatic.org/studies.htm.

Welcome to the group

Chris.

On 08/02/2004, at 9:08 AM, jinx9024 wrote:

> Hello

> My name is Janice......and I am new to this group.

> I am a canadian. I have psoriatic arthritis which is under very

> poor control right now...lots of pain and swelling and stiffness of

> joints. I am wondering if there are any other canadians in the group

> using antibiotic therapy and what kind of results you are getting.

> I have approached my rheumy about using low dose antibiotics and she

> says that they don't work and that it is not a recommended protocol

> in canada. Any thoughts?

> Janice

>

>

>

>

[Guest guest]

Barb,

Hello and welcome to the group. Lots of great people on here who

will give you more information than you can possibly find anywhere

else.

I have to say, I know how it is to feel the guilt, but try not to.

Easier said than done. Your ped is the one that should have suggested

you to start PT (im assuming she has torticollis?). is

still young enough to get a great start on this - and if needed, the

bands/helmets DO WORK!! You can see all the stories here about how

great they do! I know others will chime in about where to find more

info on that.

My son, Jaxson, was diagnosed with torticollis at 2 months, started

PT and OT then, and was diagnosed with severe plagio at 4 months,

receiving the CranioCap just before he turned 5 months, and he is

close to being done. The torticollis is getting better, still some

tightness, but we're working on it. He's been in therapy for 5 months

now.

About your ped... my only suggestion would to bring to her

information on the use of bands/helmets. Print off whatever you can

find to support the use of them. Show her, and if she still says they

do not work, send her to this group!! Really though, if she

doesn't agree, I would consider changing peds and find one that will

support the use of bands.

Good luck to you and ... keep us posted!

Kim

mom to Kaela (9) and Jaxson 7.5 months tort/plagio/CranioCap

> Hi! I am writing from Maine. My wonderful daughter, ,

will

> be 4 months next Tuesday and we are beginning the process for

seeking

> treatment of her plagio. I have been aggressively repositioning

for

> about 5 to 6 weeks now --and it just isn't working--most likely

> because we haven't yet started physical therapy for her tort.

>

> About 2 1/2 weeks ago, I took her to her pediatrician to have her

> condition evaluated. The doctor said to keep repositioning and

also

> suggested Cranial Sacral Therapy. The doctor is concerned about

> ruling out cranio. (something didn't feel right with her sutures)

and

> said that she would re-check at her 4 month visit and send us on to

a

> neurosurgeon if she still had cause for concern. Sounded like a

plan

> to me at the time. We have not yet seen the osteopath-that appt is

> in a couple more weeks.

>

> Since we saw the pediatrician I have, of course, been all over the

> Internet researching and have been so encouraged by the success

> people have had with the bands. But I can appreciate that the

sooner

> we start treatment the better. SO I just got off the phone with

the

> ped. this afternoon--I called to let her know how concerned I am

that

> 's head is just getting worse! She finally suggested

> physical therapy ( I should have asked for that before--my fault).

I

> asked her whether she had any patients who had been treated with

> helmets or headbands and she said " absolutely not " --just physical

> therapy and some cranial sacral therapy for those who were

interested

> in osteopathic treatment. She also said that she would get a copy

of

> a recent journal article for me that supposedly concludes

> that " helmets don't work " !!

>

> I know that I am getting ahead of myself assuming that

> should be in a band (based on the pictures that I have seen posted

on

> the Internet I would think she is going to be classified as

> a " moderate " case)---but I am so discouraged to know that my

> physician isn't going to even consider that to be an option!! I am

> shocked!!

>

> Has anyone heard anything about the research to which she is

> referring?

>

> Also, would be curious to know if any of you were unsuccessful with

> breastfeeding due to this condition--if only I had listened to the

> lactation consultant who after 6 weeks of trying to help us said

that

> the only thing she could think of that was left to explain

> 's ineffective suck was some misalignment in her mouth--

she

> recommended that we think about cranial sacral therapy at that time

> and I thought it was too much of a long shot!! Oh, the mother's

> guilt I have about that...

>

> thank you,

> Barb

> Maine

[Guest guest]

Hi Barb and welcome to the group! My daughter didn't have Tort, but

I have heard time and time again that tort babies couldn't/wouldn't

breastfeed. Again, this is not your fault. As far as your ped

goes, I would go to the " photo " section of the group and print off

pictures of banded babies. There is a before and after section that

proves bands/helmets do work. There is also an article from the AAP

article stating this in our " files " section. Has had a CT

Scan or 3-D x-rays to rule out cranio? Please keep us posted on how

your ped reacts to your new-found knowledge of plagio.

Dustie, mom to , DOCgrad'03

Dallas

> Hi! I am writing from Maine. My wonderful daughter, ,

will

> be 4 months next Tuesday and we are beginning the process for

seeking

> treatment of her plagio. I have been aggressively repositioning

for

> about 5 to 6 weeks now --and it just isn't working--most likely

> because we haven't yet started physical therapy for her tort.

>

> About 2 1/2 weeks ago, I took her to her pediatrician to have her

> condition evaluated. The doctor said to keep repositioning and

also

> suggested Cranial Sacral Therapy. The doctor is concerned about

> ruling out cranio. (something didn't feel right with her sutures)

and

> said that she would re-check at her 4 month visit and send us on

to a

> neurosurgeon if she still had cause for concern. Sounded like a

plan

> to me at the time. We have not yet seen the osteopath-that appt

is

> in a couple more weeks.

>

> Since we saw the pediatrician I have, of course, been all over the

> Internet researching and have been so encouraged by the success

> people have had with the bands. But I can appreciate that the

sooner

> we start treatment the better. SO I just got off the phone with

the

> ped. this afternoon--I called to let her know how concerned I am

that

> 's head is just getting worse! She finally suggested

> physical therapy ( I should have asked for that before--my

fault). I

> asked her whether she had any patients who had been treated with

> helmets or headbands and she said " absolutely not " --just physical

> therapy and some cranial sacral therapy for those who were

interested

> in osteopathic treatment. She also said that she would get a copy

of

> a recent journal article for me that supposedly concludes

> that " helmets don't work " !!

>

> I know that I am getting ahead of myself assuming that

> should be in a band (based on the pictures that I have seen posted

on

> the Internet I would think she is going to be classified as

> a " moderate " case)---but I am so discouraged to know that my

> physician isn't going to even consider that to be an option!! I

am

> shocked!!

>

> Has anyone heard anything about the research to which she is

> referring?

>

> Also, would be curious to know if any of you were unsuccessful

with

> breastfeeding due to this condition--if only I had listened to the

> lactation consultant who after 6 weeks of trying to help us said

that

> the only thing she could think of that was left to explain

> 's ineffective suck was some misalignment in her mouth--

she

> recommended that we think about cranial sacral therapy at that

time

> and I thought it was too much of a long shot!! Oh, the mother's

> guilt I have about that...

>

> thank you,

> Barb

> Maine

[Guest guest]

Barb,

Welcome to the group!

I think your pediatrician has her wires crossed... currently we

know of no scientific studies that show that craniosacral therapy

works.

We have a large reference section here at the group, including links

to all studies about plagiocephaly. Your pediatrician should

already be aware of the American Academy of Pediatrics Clinical

Report on deformational Plagiocephaly published last July (a report

your ped should be abiding by), that states that a referral to

specialist for consideration of helmet/band molding therapy is

appropriate in certain situations. No mention of craniosacral

therapy is in the AAP's clinical report, however. In addition,

there are guidelines already proposed and currently being considered

by the AAP, that more clearly states at what ages/severity is a

helmet/band referral advised. All of these studies are here at the

group, but you may want to alert your pediatrician to them (if the

link is two lines long, you may need to copy and paste the entire

link to your address bar to get directed correctly):

AAP Release July 2003

Prevention & Management of Positional Skull Deformities in Infants -

AAP finally acknowledges relationship of " back to sleep " in increase

in plagio!

http://aappolicy.aappublications.org/cgi/content/full/pediatrics;112/

1/199?fulltext=plagiocephaly & searchid=QID_NOT_SET

AAP Proposal Nov. 2003

New Guideline for treatment of deformational plagiocephaly are

proposed 11/5/03

http://www.docguide.com/news/content.nsf/news/8525697700573E1885256DD

5007FCDB8?

OpenDocument & id=48DDE4A73E09A969852568880078C249 & c=Paediatrics & count=

10.htm

Clinical Report: Acquiring Craniofacial Symmetry and Proportion

Through Repositioning, Therapy, and Cranial Remolding Orthoses

Orthomerica's Cranial Remolding Clinical Report

http://www.orthomerica.com/pdf/cranialwp.pdf

Cranial Growth Unrestricted During Treatment of Deformational

Plagiocephaly

This study demonstrates that infants follow the normal growth curves

with respect to head circumference, length and width during the

course of treatment..

http://www.cranialtech.com/ParentsArea/publications/cti1174.pdf

Deformational Posterior Plagiocephaly: Diagnosis and Treatment (pub.

Nov. 2002)

This study was designed to evaluate the effectiveness of helmet

therapy (DOC band) in the correction of patients with moderate to

severe posterior deformational plagiocephaly. The study recorded a

41.56% (p < .001) reduction in cranial vault asymmetry and a 40.23%

(p <.001) reduction in cranial base asymmetry. Orbitotragial

asymmetry was improved 18.72% (p = .0738).

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

cmd=Retrieve & db=PubMed & list_uids=12401104 & dopt=Abstract

Static Orthotic Cranioplasty<Passive Helmet> as a Nonsurgical

Alternative for the Treatment of Deformational Plagiocephaly (2001

As the child's skull grows, these prominences will be held in

equilibrium with the orthosis, and outward cranial growth will be

passively kept from progressing. The progression of the expanding

cranium during growth cycles is focused into the realignment voids,

which results in a gradual resolution of the craniofacial asymmetry.

A pilot study of this method was conducted over a 1-year period. The

study group comprised 12 patients with a mean age (± SD) of 7.9 (±

2.1) months (range, 5 to 14 months). Patients who began orthotic

treatment by 6 months of age demonstrated the highest rate of

symmetrical resolution. The rate of correction decreased as the

child's age increased, supporting the findings of ,17

Littlefield,18 and Ripley,19 who correlated age of treatment

initiation with treatment success.

http://www.oandp.org/jpo/library/2001_02_045.asp

Treatment of Craniofacial Asymmetry with Dynamic Orthotic

Cranioplasty

Eight-year investigation that demonstrated the effectiveness of the

DOC Band® for treatment of positional plagiocephaly.

http://www.cranialtech.com/ParentsArea/publications/jcfsjan98.pdf

Treatment of the " older " infant with plagiocephaly

This study documents that even though early intervention is best,

treatment can still be successful even if the child is older than 12

months of age.

http://www.neurosurgery.org/focus/sep00/9-3-5.pdf

Study: Active Counterpositioning or Orthotic Device to Treat

Positional Plagiocephaly (pub. Jul. 2001)

The purpose of this study was to compare these two management

regimens. Orthotic helmets have an outcome comparable to that of

active counterpositioning, although the management period is

approximately three times shorter.

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

cmd=Retrieve & db=PubMed & list_uids=11482615 & dopt=Abstract

Study: Helmet versus Nonhelmet Treatment in Nonsynostotic Positional

Posterior Plagiocephaly (pub. Nov. 2000)

Improvement was significantly better and faster in the helmet group

compared with nonhelmet treatment.

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

cmd=Retrieve & db=PubMed & list_uids=11314498 & dopt=Abstract

You are not alone in being in a situation where you have a

pediatrician reluctant to prescribe a helmet/band. If, after

educating her, you are unable to convince/strong-arm her into

writing a prescription, you may need to change pediatricians.

I understand how tort can really undermine repositioning efforts;

usually parents don't have much success at all with repo until the

tort is resolved. I would definitely mention to your ped that due

to the tort, repo really isn't an option, and you should be

presented with other treatment options such as a helmet or band.

Good luck and I hope we can be of help to you here at the group. We

have a lot of information here at the group site in the files,

photos, links, database, and polls section here at the group.

Take care,

Christie (Mom to Repo'd Remy)

> Hi! I am writing from Maine. My wonderful daughter, ,

will

> be 4 months next Tuesday and we are beginning the process for

seeking

> treatment of her plagio. I have been aggressively repositioning

for

> about 5 to 6 weeks now --and it just isn't working--most likely

> because we haven't yet started physical therapy for her tort.

>

> About 2 1/2 weeks ago, I took her to her pediatrician to have her

> condition evaluated. The doctor said to keep repositioning and

also

> suggested Cranial Sacral Therapy. The doctor is concerned about

> ruling out cranio. (something didn't feel right with her sutures)

and

> said that she would re-check at her 4 month visit and send us on

to a

> neurosurgeon if she still had cause for concern. Sounded like a

plan

> to me at the time. We have not yet seen the osteopath-that appt

is

> in a couple more weeks.

>

> Since we saw the pediatrician I have, of course, been all over the

> Internet researching and have been so encouraged by the success

> people have had with the bands. But I can appreciate that the

sooner

> we start treatment the better. SO I just got off the phone with

the

> ped. this afternoon--I called to let her know how concerned I am

that

> 's head is just getting worse! She finally suggested

> physical therapy ( I should have asked for that before--my

fault). I

> asked her whether she had any patients who had been treated with

> helmets or headbands and she said " absolutely not " --just physical

> therapy and some cranial sacral therapy for those who were

interested

> in osteopathic treatment. She also said that she would get a copy

of

> a recent journal article for me that supposedly concludes

> that " helmets don't work " !!

>

> I know that I am getting ahead of myself assuming that

> should be in a band (based on the pictures that I have seen posted

on

> the Internet I would think she is going to be classified as

> a " moderate " case)---but I am so discouraged to know that my

> physician isn't going to even consider that to be an option!! I

am

> shocked!!

>

> Has anyone heard anything about the research to which she is

> referring?

>

> Also, would be curious to know if any of you were unsuccessful

with

> breastfeeding due to this condition--if only I had listened to the

> lactation consultant who after 6 weeks of trying to help us said

that

> the only thing she could think of that was left to explain

> 's ineffective suck was some misalignment in her mouth--

she

> recommended that we think about cranial sacral therapy at that

time

> and I thought it was too much of a long shot!! Oh, the mother's

> guilt I have about that...

>

> thank you,

> Barb

> Maine

[Guest guest]

Hi Barb,

And welcome to the group! But you can't let yourself feel guilty for something that you didn't know about. Especially when you are getting no support from the medical community on this. Many of us have been there...unfortunately, your story is not unusual.

I kept getting the "it will round out on it's own" speech from our peds. Finally at 6 months I decided to press for an evaluation for a neurosurgeon consult. I decided I was not going to let them talk me out of it. Our peds said something about the band not working either, and I said, well there seems to be plenty of people out there that think they do work. And he said where are you getting your information, and when I mentioned the internet and this group, he said that their opinions were biased.....Ahh!

Ruling out Cranio is important. Before just going to any neuro, you may want to call around to see if you could find a neuro who would even consider banding, if necessary. If it's not Cranio and you want to band, you want to make sure your neuro would be band friendly since your ped isn't.

Anyway before going to a neuro, I called around to a couple of the childrens hospitals in the area and talked with a nurse or physicians assistant to find out if they ever perscribed bands. I was still at the point of hoping that Matt really didn't need one, but I wanted someone who was supposedly an expert on this to make that decision.

Well, we picked out, got the referal and went to the neuro. He said Matt's head wouldn't round out on it's own, but really didn't recommend a helmet. I asked way, and he said, well, by the time he gets to kindergarten, there will be so many kids with flat heads it really wont matter.....but I didn't want Matt to have to go through that if I could help it. Well, I still wasn't convince that I should band. But the neuro said he'd give us an RX if we wanted one.

So we went to Cranial Technologies for a free evaluation. They gave us all the measurements of his asymmetry. The said he was mild/moderate so it really was our decision to make. I asked if a band would be able to improve the shape of his head, and they said, yes, they felt it could. We thought some more about it...checked out our insurance criteria for coverage and as it turns out he met their conditions on 2 or 3 counts so we decided if it was severe enough for the insurance to say they'd cover it, then maybe we should do it. Also, I was really bothered by the shape of his head. I thought that if we did nothing, and years later Matt asked us why we didn't....what could I say to him? He didn't really have a say on what he would have wanted at this age, and if we wait it would be too late. I didn't want to regret anything later. So we called back the neuro asked for an RX and we were on our way.

We first noticed the flattening at 6 weeks. We tried repo since he was about 2 months old with little success (of course, this was before we found the group and really learned more about this condition). At 6 months we started investigating going to specialists. at 8.75 months we had him evaluated at Cranial Tech. At 9 months we decide to band. 9.5 his was casted and just before 10months he got into his band. Matt had 8mm asymmetry and +2 standard deviations of Brachy index. (Aetna covers >=6mm and >= +/- 2 Std. Dev.). He was in his band for about 4.5months until he was around 14 months old. He still has 3mm assymetry, but less than 1 std. dev. brachy. We are thrilled with the results. His head looks great. I don't doubt that if we would have waited, his head would still be in the same condition as it was before treatment.

Making the decision to band is certainly a tough one and an individual choice. We also do have a lot of parents getting good results from agressive repositioning. And the medical communitey doesn't help parents with their decisions by not having an open mind on various forms of treatment and by looking at the most up to date studies. It's very frustrating.

This board is here for you with whatever you decided to do and if you need any support. Please don't hestiate to send a post. Just remember, you are 's mom. You and her father know what's best for her. Stick with your gut....it's usually right.

and (DOCgrad 13-feb-04/10-14mos./PA)

b_belik <ddakers@...> wrote:

Hi! I am writing from Maine. My wonderful daughter, , will be 4 months next Tuesday and we are beginning the process for seeking treatment of her plagio. I have been aggressively repositioning for about 5 to 6 weeks now --and it just isn't working--most likely because we haven't yet started physical therapy for her tort.About 2 1/2 weeks ago, I took her to her pediatrician to have her condition evaluated. The doctor said to keep repositioning and also suggested Cranial Sacral Therapy. The doctor is concerned about ruling out cranio. (something didn't feel right with her sutures) and said that she would re-check at her 4 month visit and send us on to a neurosurgeon if she still had cause for concern. Sounded like a plan to me at the time. We have not yet seen the osteopath-that appt

is in a couple more weeks.Since we saw the pediatrician I have, of course, been all over the Internet researching and have been so encouraged by the success people have had with the bands. But I can appreciate that the sooner we start treatment the better. SO I just got off the phone with the ped. this afternoon--I called to let her know how concerned I am that 's head is just getting worse! She finally suggested physical therapy ( I should have asked for that before--my fault). I asked her whether she had any patients who had been treated with helmets or headbands and she said "absolutely not"--just physical therapy and some cranial sacral therapy for those who were interested in osteopathic treatment. She also said that she would get a copy of a recent journal article for me that supposedly concludes that "helmets don't work"!!I know that I am getting ahead of myself assuming

that should be in a band (based on the pictures that I have seen posted on the Internet I would think she is going to be classified as a "moderate" case)---but I am so discouraged to know that my physician isn't going to even consider that to be an option!! I am shocked!!Has anyone heard anything about the research to which she is referring? Also, would be curious to know if any of you were unsuccessful with breastfeeding due to this condition--if only I had listened to the lactation consultant who after 6 weeks of trying to help us said that the only thing she could think of that was left to explain 's ineffective suck was some misalignment in her mouth--she recommended that we think about cranial sacral therapy at that time and I thought it was too much of a long shot!! Oh, the mother's guilt I have about that...thank you,BarbMaineFor more

plagio info

[Guest guest]

Hi Barb,

I forgot to comment on your breastfeeding question.....again....don't feel guilty about this. Babies with tort have a difficult time turning to one side so it make breastfeeding very difficult or impossible. Most moms and even lactation consultants never even realise the problem was tort until way after the fact.

Are you doing any stretches on yet for her tort? Once you start these, you will be amazed at how helpful they are. It's great when you finally see your little one turn their head to the other side all on their own!

and (DOCgrad 13-Feb-04/10-14mos./PA)

dustiejones <dustiejones@...> wrote:

Hi Barb and welcome to the group! My daughter didn't have Tort, but I have heard time and time again that tort babies couldn't/wouldn't breastfeed. Again, this is not your fault. As far as your ped goes, I would go to the "photo" section of the group and print off pictures of banded babies. There is a before and after section that proves bands/helmets do work. There is also an article from the AAP article stating this in our "files" section. Has had a CT Scan or 3-D x-rays to rule out cranio? Please keep us posted on how your ped reacts to your new-found knowledge of plagio.Dustie, mom to , DOCgrad'03Dallas> Hi! I am writing from Maine. My wonderful daughter, , will

> be 4 months next Tuesday and we are beginning the process for seeking > treatment of her plagio. I have been aggressively repositioning for > about 5 to 6 weeks now --and it just isn't working--most likely > because we haven't yet started physical therapy for her tort.> > About 2 1/2 weeks ago, I took her to her pediatrician to have her > condition evaluated. The doctor said to keep repositioning and also > suggested Cranial Sacral Therapy. The doctor is concerned about > ruling out cranio. (something didn't feel right with her sutures) and > said that she would re-check at her 4 month visit and send us on to a > neurosurgeon if she still had cause for concern. Sounded like a plan > to me at the time. We have not yet seen the osteopath-that appt is > in a couple more weeks.> > Since we saw the pediatrician I have, of

course, been all over the > Internet researching and have been so encouraged by the success > people have had with the bands. But I can appreciate that the sooner > we start treatment the better. SO I just got off the phone with the > ped. this afternoon--I called to let her know how concerned I am that > 's head is just getting worse! She finally suggested > physical therapy ( I should have asked for that before--my fault). I > asked her whether she had any patients who had been treated with > helmets or headbands and she said "absolutely not"--just physical > therapy and some cranial sacral therapy for those who were interested > in osteopathic treatment. She also said that she would get a copy of > a recent journal article for me that supposedly concludes > that "helmets don't work"!!> > I know that I am getting ahead of

myself assuming that > should be in a band (based on the pictures that I have seen posted on > the Internet I would think she is going to be classified as > a "moderate" case)---but I am so discouraged to know that my > physician isn't going to even consider that to be an option!! I am > shocked!!> > Has anyone heard anything about the research to which she is > referring? > > Also, would be curious to know if any of you were unsuccessful with > breastfeeding due to this condition--if only I had listened to the > lactation consultant who after 6 weeks of trying to help us said that > the only thing she could think of that was left to explain > 's ineffective suck was some misalignment in her mouth--she > recommended that we think about cranial sacral therapy at that time > and I thought it was too much of a long shot!!

Oh, the mother's > guilt I have about that...> > thank you,> Barb> MaineFor more plagio info

[Guest guest]

Hi Barb,

Welcome to the group! I see that you've received some really great

replies so I won't repeat what you've already been told.

> Hi! I am writing from Maine. My wonderful daughter, ,

will

> be 4 months next Tuesday and we are beginning the process for

seeking

> treatment of her plagio. I have been aggressively repositioning

for

> about 5 to 6 weeks now --and it just isn't working--most likely

> because we haven't yet started physical therapy for her tort.

>

> About 2 1/2 weeks ago, I took her to her pediatrician to have her

> condition evaluated. The doctor said to keep repositioning and

also

> suggested Cranial Sacral Therapy. The doctor is concerned about

> ruling out cranio. (something didn't feel right with her sutures)

and

> said that she would re-check at her 4 month visit and send us on to

a

> neurosurgeon if she still had cause for concern. Sounded like a

plan

> to me at the time. We have not yet seen the osteopath-that appt is

> in a couple more weeks.

>

> Since we saw the pediatrician I have, of course, been all over the

> Internet researching and have been so encouraged by the success

> people have had with the bands. But I can appreciate that the

sooner

> we start treatment the better. SO I just got off the phone with

the

> ped. this afternoon--I called to let her know how concerned I am

that

> 's head is just getting worse! She finally suggested

> physical therapy ( I should have asked for that before--my fault).

I

> asked her whether she had any patients who had been treated with

> helmets or headbands and she said " absolutely not " --just physical

> therapy and some cranial sacral therapy for those who were

interested

> in osteopathic treatment. She also said that she would get a copy

of

> a recent journal article for me that supposedly concludes

> that " helmets don't work " !!

>

> I know that I am getting ahead of myself assuming that

> should be in a band (based on the pictures that I have seen posted

on

> the Internet I would think she is going to be classified as

> a " moderate " case)---but I am so discouraged to know that my

> physician isn't going to even consider that to be an option!! I am

> shocked!!

>

> Has anyone heard anything about the research to which she is

> referring?

>

> Also, would be curious to know if any of you were unsuccessful with

> breastfeeding due to this condition--if only I had listened to the

> lactation consultant who after 6 weeks of trying to help us said

that

> the only thing she could think of that was left to explain

> 's ineffective suck was some misalignment in her mouth--

she

> recommended that we think about cranial sacral therapy at that time

> and I thought it was too much of a long shot!! Oh, the mother's

> guilt I have about that...

>

> thank you,

> Barb

> Maine

[Guest guest]

Hi Barb, welcome to

the group! My ped referred us to a neurologist that referred us to Cranial Tech

for the DOC Band, when I told the nurse at the ped’s office what we were

doing with , she asked what a DOC band is, when I told her what it was, she

still didn’t understand what I was talking about. My ped was only

concerned about the shape of ’s head if it was a growth problem, i.e.

one side of his head not growing at all, he wouldn’t have done anything

more than pt for the tort and repo for the shape of his head. will be 6

months old Tuesday and his is considered a “severe” case of plagio,

due to the inattention of the neonatologists in the hospital and the ped after.

Since your ped doesn’t want to refer you for a band or helmet, you should

probably ask for a referral to a neuro and ask the neuro for a referral for a

band or helmet, they shouldn’t have a problem with doing it. My ped is

slow to respond to any concerns I have regarding these things, I’m still

waiting for the referral to physical therapy for ’s tort, but he’ll

quickly and happily send us to any specialist I ask him to, and the neuro was

the one that told me to get him into a DOC immediately.

Only 6 days left till

we go get the band…My nerves are shot.

From: b_belik

[mailto:ddakers@...]

Sent: Thursday, February 26, 2004

2:17 PM

Plagiocephaly

Subject: New to the Group

Hi! I am writing from Maine.

My wonderful daughter, , will

be 4 months next Tuesday and we are beginning the

process for seeking

treatment of her plagio. I have been

aggressively repositioning for

about 5 to 6 weeks now --and it just isn't

working--most likely

because we haven't yet started physical therapy

for her tort.

About 2 1/2 weeks ago, I took her to her

pediatrician to have her

condition evaluated. The doctor said to keep

repositioning and also

suggested Cranial Sacral Therapy. The doctor

is concerned about

ruling out cranio. (something didn't feel right

with her sutures) and

said that she would re-check at her 4 month visit

and send us on to a

neurosurgeon if she still had cause for

concern. Sounded like a plan

to me at the time. We have not yet seen the

osteopath-that appt is

in a couple more weeks.

Since we saw the pediatrician I have, of course,

been all over the

Internet researching and have been so encouraged

by the success

people have had with the bands. But I can

appreciate that the sooner

we start treatment the better. SO I just got

off the phone with the

ped. this afternoon--I called to let her know how

concerned I am that

's head is just getting worse! She finally suggested

physical therapy ( I should have asked for that

before--my fault). I

asked her whether she had any patients who had

been treated with

helmets or headbands and she said " absolutely

not " --just physical

therapy and some cranial sacral therapy for those

who were interested

in osteopathic treatment. She also said that

she would get a copy of

a recent journal article for me that supposedly

concludes

that " helmets don't work " !!

I know that I am getting ahead of myself assuming

that

should be in a band (based on the pictures that I

have seen posted on

the Internet I would think she is going to be

classified as

a " moderate " case)---but I am so

discouraged to know that my

physician isn't going to even consider that to be

an option!! I am

shocked!!

Has anyone heard anything about the research to

which she is

referring?

Also, would be curious to know if any of you were

unsuccessful with

breastfeeding due to this condition--if only I had

listened to the

lactation consultant who after 6 weeks of trying

to help us said that

the only thing she could think of that was left to

explain

's ineffective suck was some misalignment

in her mouth--she

recommended that we think about cranial sacral

therapy at that time

and I thought it was too much of a long

shot!! Oh, the mother's

guilt I have about that...

thank you,

Barb

Maine

For more

plagio info

[Guest guest]

Hi Barb,

As you have realized by now there are many, many physicians out there who know

very little about plagio and the treatment options. I think that in Maine the

knowledge

level is very, very low unless perhaps you happen to be in the Portland area,

and I

only mention Portland because there is a pediatric neurosurgeon there who is

knowlegeable about plagio.. I say this based on the fact that we also live in

Maine

(northern Maine). In what part of Maine do you live?

Our son's primary care physician wasn't aware there was even a treatment (and he

thought I was nuts for thinking there was something even wrong with our son's

head;

he has since come around and has " seen the light " and even asked for extra

before/

after photos that we had showing 's improvement after banding) and another

doc

in that office suggested cranial sacral therapy. Another doc there said it would

round

out on its own and yet another said to reposition till one year of age. We went

ahead

and found our own specialists (thanks to this group) and got our son

evaluated by someone knowledgeable about plagio. We did have him banded and did

(and still do) home physio only since his tort is quite mild. At least your ped

recognizes PT is needed for the tort. You are also very lucky in that your

daughter is

so young. I urge you NOT to take your peds word on any of this (i.e. that

treatment is

not needed and that cranial sacral will fix it). If you are going to wish

somewhere

down the road that you had seen a specialist, then please, see one now. It will

take a

while to arrange the appointment depending on who you see.

If you decide to go the specialist route then I can give you some advice and

options

based on our search if you would like.

Oh yeah, and regarding that article, if she does dig up an article written by

some

anti-banding doc then you might want to take her a couple of articles showing

that

banding is indeed effective. You do not need the ped's blessing to see a

specialist.

Demand a referral and if that doesn't work then change peds and get the

referral. You

choose the specialist. A doc without an open mind is not one that I would want.

Good luck,

Mark in Maine (dad to , DOCgrad 1/19)

> Hi! I am writing from Maine. My wonderful daughter, , will

> be 4 months next Tuesday and we are beginning the process for seeking

> treatment of her plagio. I have been aggressively repositioning for

> about 5 to 6 weeks now --and it just isn't working--most likely

> because we haven't yet started physical therapy for her tort.

>

> About 2 1/2 weeks ago, I took her to her pediatrician to have her

> condition evaluated. The doctor said to keep repositioning and also

> suggested Cranial Sacral Therapy. The doctor is concerned about

> ruling out cranio. (something didn't feel right with her sutures) and

> said that she would re-check at her 4 month visit and send us on to a

> neurosurgeon if she still had cause for concern. Sounded like a plan

> to me at the time. We have not yet seen the osteopath-that appt is

> in a couple more weeks.

>

> Since we saw the pediatrician I have, of course, been all over the

> Internet researching and have been so encouraged by the success

> people have had with the bands. But I can appreciate that the sooner

> we start treatment the better. SO I just got off the phone with the

> ped. this afternoon--I called to let her know how concerned I am that

> 's head is just getting worse! She finally suggested

> physical therapy ( I should have asked for that before--my fault). I

> asked her whether she had any patients who had been treated with

> helmets or headbands and she said " absolutely not " --just physical

> therapy and some cranial sacral therapy for those who were interested

> in osteopathic treatment. She also said that she would get a copy of

> a recent journal article for me that supposedly concludes

> that " helmets don't work " !!

>

> I know that I am getting ahead of myself assuming that

> should be in a band (based on the pictures that I have seen posted on

> the Internet I would think she is going to be classified as

> a " moderate " case)---but I am so discouraged to know that my

> physician isn't going to even consider that to be an option!! I am

> shocked!!

>

> Has anyone heard anything about the research to which she is

> referring?

>

> Also, would be curious to know if any of you were unsuccessful with

> breastfeeding due to this condition--if only I had listened to the

> lactation consultant who after 6 weeks of trying to help us said that

> the only thing she could think of that was left to explain

> 's ineffective suck was some misalignment in her mouth--she

> recommended that we think about cranial sacral therapy at that time

> and I thought it was too much of a long shot!! Oh, the mother's

> guilt I have about that...

>

> thank you,

> Barb

> Maine

[Guest guest]

Dear Laurel, Certainly the potty training thing is extremely common on

this list--you can look up in the archives many posts.

My grandson Benny didn't like to be read to until after he had

progressed in speech therapy, and he was almost 3 yrs old then.

However, he has receptive as well as expressive speech delay, so

apparently he couldn't understand the stories. He is better now and

wants some books (like Go, Dogs, GO!) read over and over. Finding

books with very limited vocabulary, like the Dr. Seuss beginning

readers' books, helps.

Peace,

Kathy E.

On Jul 2, 2004, at 12:58 AM, laura_steve@... wrote:

> Has anyone found that kids with apraxia have trouble potty training?

> My son doesn't even like to sit on the toilet, whereas his older

> brother decided to go potty on his own at about 17 months. He just

> seems to hold it and hold it until he can hardly walk anymore and

> then is in pain when he finally goes. Maybe I'm reading too much

> into it, but I'm wondering if this is common for apraxia kids.

>

> Also, does anyone find that kids with apraxia don't like to read/be

> read to? I can't for the life of me get him to look at a book and

> take an interest. He will listen to me read a book out loud while he

> plays, but he won't look at it or look at the words. Is this common?

>

Retired--but my kids are working hard at

http://www.TheGroceryGame.com to save you money

and at http://www.heavenforanimals.com

to bring comfort when you lose a pet.

[Guest guest]

Hi ,

My son is 3.5 and is apraxic on many levels. He was

diagnosed with PDD and Mild MR wich were completly

wrong!! Definately with apraxia the words come out

jumbled. They will come out correctly, then 5 min later

they will come out wrong. he has very limited

vocabulary. At age 3 he had 5 words and only myself

and my husband knew what they meant. Sometimes you can

see him searching for a word like he knows what to say

and can't make his mouth do it. It's very frustrating

for him and myself. Maybe a second opinion on your

son's diagnosis. Currently i am reading the book the

late talker and it is very informative on apraxia and

dyspraxia. A second opinion will be sure that you are

treating the correct prognosis.

Good luck!

Faneesha

--- <heavenly_angels_7@...> wrote:

> Hi My name is and I have a 6 year old son with

> autism. He has

> really been trying to communicate with sign language

> and some words.

> He is enjoying learning how to spell with hand over

> hand, he can also

> take letter tiles and spell words, he then learns to

> write them and

> type them on the computer. His Senior therapist

> says he has

> apraxia. Just what is that? Is it when he says

> something that

> sounds like the word but not really that clear?

> Cause if that is it,

> he does that. I pray daily for him to get more

> words. He is a smart

> little boy. Any help you maybe able to give would

> be greatly

> appreciated. He is on a special diet and takes

> supplements. We live

> in Wisconsin and he has had 3 years of intensive ABA

> therapy. Now he

> is in school full time and has therapy once a day

> after school. He

> has come so far but still has farther to go. I look

> forward to

> meeting you all.

[Guest guest]

Hello,

If you can consider traveling for treatement, I suggest that you

consider the Cranial Technolgies clinic located in Spain

(http://www.cranialtech.com/), as well as the Star Band provider in

England (look in the Database section of this site for UK clinics), in

addition to the orthotics group you have contacted in France.

Both the Cranial Technologies DOC band and the Orthomerica Star Band

have been used very effectively by members of this group with older

babies (at 11 months - its especially important to get a helmet on

right away that fits well and has been used for children at that age -

because you don't want to lose any more growth/correction time).

Best Wishes,

(Mom to who wore a DOC band in 2003)

>

> Hi everyone !

> I am a French mom very concerned by the plagio of her baby and I'm so

> glad that I've found you !

> My son is already 11 months old and it's only last week that I

> discovered that there was a potential solution to his problem ! My

> doctor diagnosed his plagio when he was only a few months old but

> never told me that something could be done, she said that we just had

> to wait and see…

> It seems that here in France, the helmet solution is not that well-

> known and there is only one hospital in the whole country that does

> it. I still have to contact them to check whether this is the

> appropriate solution for my son but reading all the info on this

> Group, I think it is.

> Well this was just to let you all know that this group is so helpful

> for concerned parents and I hope I'll be back soon with good news.

> Anne-Sophie

[Guest guest]

Hi Anne-Sophie,

I'm glad you found the group! It has been a wealth of information and support for me as we made this decision for our baby. I do know that Cranial Technologies has locations in both Madrid and Barcelona. They specialize in bands for Plagio. I don't know where you are located in France and whether that is a possibility but you could check out their website at www.cranialtech.com.

Good Luck,

Jill

Mom to (5 months)

Virgina

-----Original Message-----From: ascouton [mailto:ascouton@...]Sent: Tuesday, November 02, 2004 9:42 AMPlagiocephaly Subject: New to the GroupHi everyone !I am a French mom very concerned by the plagio of her baby and I'm so glad that I've found you !My son is already 11 months old and it's only last week that I discovered that there was a potential solution to his problem ! My doctor diagnosed his plagio when he was only a few months old but never told me that something could be done, she said that we just had to wait and see… It seems that here in France, the helmet solution is not that well-known and there is only one hospital in the whole country that does it. I still have to contact them to check whether this is the appropriate solution for my son but reading all the info on this Group, I think it is.Well this was just to let you all know that this group is so helpful for concerned parents and I hope I'll be back soon with good news.Anne-SophieFor more plagio info

[Guest guest]

Welcome to the group Anne!

Sue

Colin F., 13 mos.

STArband grad 9/04

brachy

--- In Plagiocephaly , " ascouton " <ascouton@y...>

wrote:

>

> Hi everyone !

> I am a French mom very concerned by the plagio of her baby and I'm

so

> glad that I've found you !

> My son is already 11 months old and it's only last week that I

> discovered that there was a potential solution to his problem ! My

> doctor diagnosed his plagio when he was only a few months old but

> never told me that something could be done, she said that we just

had

> to wait and see…

> It seems that here in France, the helmet solution is not that well-

> known and there is only one hospital in the whole country that does

> it. I still have to contact them to check whether this is the

> appropriate solution for my son but reading all the info on this

> Group, I think it is.

> Well this was just to let you all know that this group is so

helpful

> for concerned parents and I hope I'll be back soon with good news.

> Anne-Sophie

[Guest guest]

Hi Anne,

Welcome to the group. The French hospital may or may not put a helmet on a child Sophie's age. However, you do have other options if you are willing to travel. Cranial Technolgies (DOCBand) has clinics in Spain and will band babies up to 24 months. There is also a clinic (STARBand) in London that will band babies up to 18 months. At Sophie's age it's best to have an active helmet that will use gentle pressure and Sophie's own head growth to direct the correction. A lot of local hospital helmets are passive and recommended for younger infants since they rely ony on growth. Here is the contact info from our database for Europe locations.

Germany (Passive helmet) (Also has London office)

Klinik für MKG-Chirurgie, Klinikstraße 29, D-35385 Giessen

Dr. Christoph Blecher

+49 (0)641 99 46275, joerg.c.blecher@...

www.cranio-online.de

Spain - Barcelona

DOCband

Centre d'Ortopedia Craniofacial, Carrer del Centre, 31, 08211 - Castellar del Valles; Barcelona, Spain

Joan Pinyot, Gariiga

34-656314014, 34-937148613

www.plagiocefalia.com, www.cranialtech.com

Spain - Madrid

DOCband

Medi Recon. Centro Médico Craneofacial, Bravo Murillo 118, 28020 Madrid

Joan Pinyot, M.D, Garriga, DI, Sònia Ibáñez, DI, Pere Hurtado, DI

656314014

www.plagiocefalia.com, www.cranialtech.com

Sweden

Local and Starband*

OT-Center, Morbylund 5 Danderyd

Jan Ramström cpo

08-624 95 50 , info@...

www.ot-center.se, www.orthomerica.com

Switzerland

Local

Cranio-Faciales-Centrum (cfc) Hirslanden, Schanzweg 7, CH- 5000 Aarau

PD. Dr.Dr. Beat Hammer, Dr.Dr. Dennis Rohn

41 (0)62 836 78 78, cfc@...

www.cranio-online.de, www.craniofacial.ch

Switzerland

Local

HUG - Hopital Cantonal de Geneve, Hopital des Enfants, 6, rue Willy-Donze, 1211 Geneve 14

Dr Rilliet (it's good to get a referral) physician, Ergotherapie Orthotics at the hospital makes the helmet

022 382 47 00

UK, England , London

Starscanner, Starband*, Starlight*, Clarren*,

10 Harley Street, London, W1G 9PF

Mottram, Clinical Specialist Orthotist (works with Garth )

01254 267400 stephenmottram@...

www.medistox.net, www.orthomerica.com

I hope this is useful.

mom to na

ascouton <ascouton@...> wrote:

Hi everyone !I am a French mom very concerned by the plagio of her baby and I'm so glad that I've found you !My son is already 11 months old and it's only last week that I discovered that there was a potential solution to his problem ! My doctor diagnosed his plagio when he was only a few months old but never told me that something could be done, she said that we just had to wait and see… It seems that here in France, the helmet solution is not that well-known and there is only one hospital in the whole country that does it. I still have to contact them to check whether this is the appropriate solution for my son but reading all the info on this Group, I think it is.Well this was just to let you all know that this group is so helpful for concerned parents and I hope I'll be back soon with good

news.Anne-SophieFor more plagio info

[Guest guest]

Hi there

Just to second the welcome you have had from the group. I'm in the

Uk, adn we do tend to feel a bit isolated compared to those in the

US where there are more banded babies.

It sounds to me like you are keen on the helmet option and you are

right that it may be able to help your little one. However- time is

very much of the essence, so i would encourage you to act very

quickly if you do want to go for that option. It can take a couple

of weeks of see someone, then you have to wait for the helmet to be

made- and this is all time in which your little one could be

achieveing correction. Is it possible to call the French hospital or

orthotists and ask them about treating an 11 month old? It may be

they are not keen to, or there is a waiting list, in which case it

is probably better to know this and go elsewhere (although of course

they may well help!)

If you are looking in other countries- I know Dr Blecher in the UK

only usually bands babies up to 12 months unless they are severe, so

you would have to move very quickly if you were thinking of him. He

can also see you in Germany- the current waiting is about three

weeks- and you would probably need to call immediately for an

appointment. If you did want to come to London, Steve Mottram may be

a better option, as he will band in the STARband starting up until

18 months. However, he is quite honest about the fact that it is

dependent, like all active helmets on natural growth as well as

holding pressure, so he will not give you an unrealistic assessment

of the correction you are likely to see. I personally went to Dr

Blecher and found him excellent, and I know quite a few people who

have gone to Steve Mottram and have also found him to be very good.

I do hope it doesn't seem like we are all weighing in and trying to

persuade you to put your little one in a band if that isn't what you

want. I think we are all just keen to help because it is very sad

when you hear from people who are not seeing the results they want

as the growth slows down in the first/second year. That's why the

sooner you start, the better the results are likely to be.

Hope this helps- do come back with any queries, although I can only

really speak about UK experiences.

Take care

Hannah (mum to Lucia, London, UK)

Corrected Plagio, Cranio helmet, 4th July '04

>

> Hi everyone !

> I am a French mom very concerned by the plagio of her baby and I'm

so

> glad that I've found you !

> My son is already 11 months old and it's only last week that I

> discovered that there was a potential solution to his problem ! My

> doctor diagnosed his plagio when he was only a few months old but

> never told me that something could be done, she said that we just

had

> to wait and see…

> It seems that here in France, the helmet solution is not that well-

> known and there is only one hospital in the whole country that

does

> it. I still have to contact them to check whether this is the

> appropriate solution for my son but reading all the info on this

> Group, I think it is.

> Well this was just to let you all know that this group is so

helpful

> for concerned parents and I hope I'll be back soon with good news.

> Anne-Sophie

>

>

>

>

>

>

> For more plagio info

[Guest guest]

Hi Larry,

So gald you wrote. I know for so many of us it can be real lonely at times for

others to understand how you feel your emotions and your body. Just keep the

communication open with your wife. My hubby is a ER nurse so he is used to life

and death. At first he was really quiet and didnt say much. I felt like he didnt

care but it has been almost a year since the diagnosis and now he handles it

much better. I think he was scared because he knew that this could get ugly and

painful. He has also told me he feels helpless and doent know how to help me so

I have learned to talk more and to keep asking him for the help I need now. I

have a pride issue and have a hard time admitting I need to slow down or say

help to anyone. I would read to him letters from this group and research papers

or articles out of Arthritis today. Sometimes it is easier to pretend and some

people dont know how to react or what to say . I hope this doesnt offend you but

I would like to pray for you right now. Dear

Heavenly Father, I thank you that Larry found this group. I lift him up to you

right now in the name of Jesus and ask that you would help him to communicate to

his wife. That you would show him how very dear he is to you Lord, that he would

feel your love for him and that you desire good for him. That you would give his

wife compassion, understanding, support, love and be a helper to him. I ask that

you give Larry the strength he needs. Allow his marriage to be strengthened by

this. Only you Lord know all that he needs and desires I ask that you would

knock on the door of his heart and and give him peace and joy. Thank you In

Jesus Name Amen. I will continue to pray daily for you. Please keep us all

posted on how you are we all care for oneanother here. The bible says you do not

receive because you do not ask. Just ask anyone here and everyone is always

willing to talk and help. But please also keep talking to your wife Im sure her

heart is hurting for you.Have a wonderful day.

Latisha

bichondaddy1057 <bichondaddy1057@...> wrote:

Hi All...

Just want to introduce myself to everyone. My name is Larry and I

have severe osteoarthritis in both knees and RA in my hips. I am 47,

M/ living in the New Orleans Metro area. I just am hoping to find a

place to talk, my wife does not really seem to understand that I am

in pain 24-7/365, and it does get old hurting all the time.

Larry...

[Guest guest]

Welcome Larry,.....You have come to the right place for support and

friendship, T

>

>

> Hi All...

>

> Just want to introduce myself to everyone. My name is Larry and I

> have severe osteoarthritis in both knees and RA in my hips. I am

47,

> M/ living in the New Orleans Metro area. I just am hoping to find a

> place to talk, my wife does not really seem to understand that I am

> in pain 24-7/365, and it does get old hurting all the time.

>

> Larry...

[Guest guest]

Welcome Larry. Sorry for your reasons for being here, but glad you found

us. 24/7 pain is something many of us here understand. No one can really

understand it unless they too have experienced it. They can say they do,

but they really don¹t have any idea of what it does to not get a break from

pain. Before finding meds that helped, I had 24/7 pain. It is now more

managable. I hope your doctor can help you with your pain. Any chance of

getting those knees replaced? I had mine both done and they are almost like

new. If only my ankles could get so lucky, I¹d be on the front page of

Sports Illustrated LOL! Yeah right, I can dream. Knees and hips are the

most sucessful joints replaced. They are getting better with the ankles,

but not there yet.

a

>

>

> Hi All...

>

> Just want to introduce myself to everyone. My name is Larry and I

> have severe osteoarthritis in both knees and RA in my hips. I am 47,

> M/ living in the New Orleans Metro area. I just am hoping to find a

> place to talk, my wife does not really seem to understand that I am

> in pain 24-7/365, and it does get old hurting all the time.

>

> Larry...

>

>

>

>

>

>

>

>

>

[Guest guest]

HI All...

I wanted to thank all of you who welcomed me to the group. I have been dealing

with this mostly by myself for over 5 years now, and although some days are

better than others, most are no fun. I look forward to talking to everyone in

the group, and hope I can learn from all of you nice people.

Larry in New Orleans...

__________________________________________________

[Guest guest]

Welcome, Larry! Here you will find many people who are able to

understand your pain and frustration.

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] New to the Group

>

>

>

> Hi All...

>

> Just want to introduce myself to everyone. My name is Larry and I

> have severe osteoarthritis in both knees and RA in my hips. I am 47,

> M/ living in the New Orleans Metro area. I just am hoping to find a

> place to talk, my wife does not really seem to understand that I am

> in pain 24-7/365, and it does get old hurting all the time.

>

> Larry...

[Guest guest]

Hi , welcome to the group! You have come to the right place,

there are so many great people, and know how you feel, T

>

>

> Hello All,

> My name is and I have fm. I have had it for 8yrs.

> I still would like my life to be the way it was. I miss being

> able to be active. I am 50 years old and I love life and being

> involved with everything. I have three grandchildren and love

> to be part of their lives, I wnat to do things with them like

> I used to and can not and they can not understand why I do not

> go with them all the time now.

> I have other things also I have ibs,cfs, I have

> vericose veins that make my legs hurt also, degenerative disc

> desease and arthritise in my spine, and cronic sinusitus,along with

> migranes at times.

> I went to the doc because I was feeling really tired,

> more than usuall and he uped my zolofed to 100mg a day and

> said if it did not help he could give me something to help me

> stay awake during the day and I would still beable to take my

> abien at night. I do not want to do that. It makes me feel like

> I am going to be a drug addict, something to keep me awake and to

> put me to sleep and something for the pain etc.

> At times I just do not want to be in my body for awhile.

> I thought talking to people with the same problems would help me

> get through the really rough times.

>

> Thank You and Looking forward to talking

> to you all