Question

[Guest guest]

Hi

The arm and leg turning purple would worry me as well. Ring your doctor/ped

and ask them about this. Please let us know how you get on.

Best wishes

Kerry - Marcus (3) Dylan in second DOCband (16months)

Calgary,AB

>From: Av@...

>Reply-Plagiocephaly

>Plagiocephaly

>Subject: question

>Date: Wed, 12 Jun 2002 13:41:10 EDT

>

>Hi.

>

>I have a question...i'm supposed to be putting to sleep on his left

>side only every time he sleeps....and when we lay him on his

>side..sometimes

>his leg or arm turns dark purple...and it scares me so much...that his

>circulation is getting cut off...so i move his arm or leg around and rub it

>until it's back to normal. But this shouldn't be happening, right? i make

>sure he's not really laying on his arm or leg..but it still happens. I'd

>rather put him on his back...if that's going to happen. He will most

>likely

>need the helmet anyway...but i wanted to be able to help him maybe have it

>for a shorter period of time by keeping him off the back of his head and

>the

>right side too...but not if it means cutting off his circulation.

>

>Does this mean something is wrong with him?

>

>Thanks,

>

>Mom to

_________________________________________________________________

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[Guest guest]

:

I'm glad the Dr's office got back with you & they say it's nothing to

worry about. I have never heard of this happening. Thanks for

letting us know

Debbie Abby's mom DOCgrad

MI

> Well the pediatrician's office called back just now....the nurse

talked to my

> ped and she said it's absolutely normal for that to happen..(his

leg or arm

> turning purple). I guess i feel better knowing she said it's

normal. It's

> probably that all the blood rushes to that side..i guess. I didn't

get to

> talk to the dr..but next time i go i will ask her. I will just

keep an eye

> on him even though they said it's normal. Thanks for the replies i

got!!

>

>

[Guest guest]

Hi

I glad that the ped called you back. Thanks for letting us know.

Take care

Kerry

>From: Av@...

>Reply-Plagiocephaly

>Plagiocephaly

>Subject: Re: question

>Date: Wed, 12 Jun 2002 16:09:23 EDT

>

>Well the pediatrician's office called back just now....the nurse talked to

>my

>ped and she said it's absolutely normal for that to happen..(his leg or arm

>turning purple). I guess i feel better knowing she said it's normal. It's

>probably that all the blood rushes to that side..i guess. I didn't get to

>talk to the dr..but next time i go i will ask her. I will just keep an eye

>on him even though they said it's normal. Thanks for the replies i got!!

>

>

_________________________________________________________________

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[Guest guest]

I guess you could look up " defect " in a medical dictionary and see what it

says. I included TONS of definitions from a medical dictionary in my Level

Two appeals because they slung around a bunch of medical terms that didn't

seem to make sense.

Marci

[Guest guest]

,

I would be concerned about the turning purple as well. My daughter slept on

her sides (alternating) and we never noticed her limbs turning purple. I

would get in to see ped and discuss as soon as possible!

Marci (Mom to )

Oklahoma

[Guest guest]

,

I would be concerned about this too, and ask the ped about the circulation

problem. But just to share my story, my son also had tort and when we would

turn his head to the left (tort side) his face would turn bright red. This

scared us too because it looked like the circulation was being cut off. I

don't know if this was due to being cramped inutero and the veins were in

different places, but I do know that as we continued on with exercises, this

cleared up on its own. I would definetly talk with the ped about it though,

because sleeping on it for that long period without circulation would concern

me too. I hope it all works out where its just a pinch in the circulation

and he will " outgrow " it like our son did- but again- address this concern

with your Doctor.

' Mom

[Guest guest]

In a message dated 6/12/2002 10:32:37 PM Eastern Daylight Time, marcisch@... writes:

I guess you could look up "defect" in a medical dictionary and see what it

says

Marci,

I see we think very alike!!! I didn't have a medical dictionary, but the American Heritage seemed to give a definition that I would think should work- but you know insurance companies!!

[Guest guest]

Hi everyone,

I must say I have had so many problems with that it is nice to be back.

OK here is my question:

Will has bad allergies and he is also taking klonopin & Depakote (which we

are in the process of weaning him off ) and putting him on Lamitcal.

But now I would like to help him with his allergies the poor little guy is

always to congested and he does take claratin but i was wondering if anyone

every heard about Swiss Flower Pollen I also heard it was great for the

immunity and energy?

Can anyone help me.

Thanks

Take Care

Lori

[Guest guest]

I don't know of anyone who looked into MTBE.

It is pretty well known where it is in groundwater, so it should be

easy to track. E. g. are all the kids in Santa autitsic or not?

Andy . . .. . . . . . .

> I have been a lurker on this list for a while. Has any

> one looked in the exposure to the mtbe additive in

> gas. They started adding it in the early 70's. Then a

> more concentrated form in the early 90's. The states

> with the highest pollution in the groundwater from

> this is in California and New Jersey,where the highest

> numbers are.

>

> Jane 's Mom

>

>

> __________________________________________________

>

[Guest guest]

> does anyone remember..did i ever post the update on me..this virus

has me lost..thanx

>

:

I'm trying to remember here! We've had so many posts lately, I'm

losing my moderator mind! LOL. It isn't ringing any bells though, so

I'm gonna guess not.

Debbie Abby's mom

MI

[Guest guest]

> does anyone remember..did i ever post the update on me..this virus

has me lost..thanx

>

>

,

I don't think you did do an official update post, but I could be

mistaken! Go ahead and search the archives, you're a pro at that

now! ;o)

Niki

[Guest guest]

Dear Fran,

At MedicineNet.com I found the following list of side effects of

sulfasalazine. I'm putting in all caps the ones that jumped out at me in

relation to your sister's symptoms:

Sulfasalazine frequently causes THE SKIN OR THE URINE TO CHANGE COLOR.

Development of an orange-yellow coloration is of no cause for concern.

Several potentially dangerous side effects have been rarely reported with

sulfasalazine. A drop in white blood cell count or a type of anemia in which

red blood cells are disrupted (hemolyzed) occur more frequently in patients

with arthritis who are treated with sulfasalazine (about 6 per 1,000) than

in patients with ulcerative colitis or Crohn's disease who are treated with

sulfasalazine (about 6 per 10,000). These effects are characterized by

fever, pale skin, sore throat, fatigue, and UNUSUAL BLEEDING AND BRUISING,

and require discontinuation of the drug.

Continuing headache, allergic reactions, and photosensitivity may develop

during sulfasalazine therapy and require medical attention. Some of the

allergic reactions may progress from a rash to difficulty in swallowing,

BLISTERING, PEELING, OR LOOSENING OF THE SKIN, aching joints and muscles,

and unusual tiredness or weakness. It may be accompanied by fever. The more

severe allergic reactions are rare. "

Have you gotten any answers back from anyone else?

Ellen

rheumatic question

> Hello everyone

>

> I only come here periodically to try and help my sister. And I thank

> all who have written back in the past from the bottom of my heart. I

> need to get some more help. Joan, my sister came off the AP last year

> as the Dr's would not let her continue. They put her on

> sulfasalazine. She has been ok on this from the pain factor, but has

> been loosing weight (she is only 7 stone now, and 5ft 8))but is still

> very much housebound. She has a new thing happening to her now. Every

> evening she comes up in big red fluid filled patches. They are not

> hives as they are not itchy. But they are extremely painful. They

> move about every evening from arm to leg to head to body. One never

> comes up in the same place twice. They are usually gone by morning,

> but sometimes a residual red patch with no swelling remains.

>

> Has anyone any ideas as to what they are? Her GP is sending her to

> see a dermatologist, but it is obvious to anyone who has seen them

> that they are from within, not the skin. But as the Dr's don't see

> them as they only come up in the evening she has taken photos.

>

> Thanks

>

> Fran

>

>

>

> To unsubscribe, email: rheumatic-unsubscribeegroups

>

>

>

[Guest guest]

Hi Tess,

I've read that people need to decrease the time between infusions or

increase their dosage on Remicade after a period of time. You may want to

ask your rheumy if he would be open to trying it. This may be because of

the " mouse component " . I think someone posted that you take the MTX with

the Remicade so you don't build antibodies to it. I know our body

acclimates to many medications and they become less effective. The rheumy

in the Remicade study said the best way to use the pain meds I'm on (Lortab

and Ultracet) is to alternate every week or two, to avoid this.

I'm sure and a will have some good input regarding why this

happens.

With much love,

Carol

[ ] question

Hi...I haven't wanted to bring this up as I surely don't want to dash

anyone's hopes. But I am concerned, and would like to know if anyone

else has gone/is going through this.

My first 4 Remicade infusions truly were remarkable. With the first one

I felt improvement in just a few hours. However, in my last cycle the

Remicade seemed to " tire out " at 6 weeks. This time it wore out at 5.

I see the MA on Thursday for my next infusion and will definately bring

this up. I thought about the weight issue re: dosage, but my weight is

the same as when I started.

It seems as though everything I've tried has worked, at least somewhat,

for a period of time, then stops. Why does this happen?

Love & Prayers...

Tess

[Guest guest]

Hi,

My B12 is never very high even though I get B12 shots monthly. A young

rheumatologist resident once told me he feels there is a connection with low

B12 and RA in some cases. I intend to look into the B12 that dissolves

under the tongue. Regular B12 tablets can't be trusted to be absorbed

properly. I will do the " under the tongue " B12 and continue to get my B12

shots.

Sincerly,

Patsy

[ ] Question

My new doctor just called me and said that my tests were beginning to come

in and she called to give me the result of one. Seems I am dangerously low

on my B-12 levels and she stated it was enough so that she is recommending

me for lifetime maintanence with B-12 shots. She asked me to come in

tomorrow to get the first one as she is leaving on vacation and she did not

want me to wait until the first week of September to get my first. She also

said she would discuss this at length with me on my appointment as well as

the other tests.

Has anyone else experienced this or know anything about it and how it

affects FM?

Thanks, Jan in CA +/:=)

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

[Guest guest]

,

Not only have I heard of it, I had hypermobile joints before RA. I was an

excellent gymnast because of my flexibility. Sure wish I had it now!!

Here are some sites on it:

http://www.ednf.org/

http://www.orthop.washington.edu/arthritis/types/ehlersdanlos/01

a

> Does anyone in the group have Severe Hypermobility Syndrome? If not,

> has anyone heard of it?

>

> in WA

>

>

>

[Guest guest]

> ,

> Not only have I heard of it, I had hypermobile joints before RA. I

was an

> excellent gymnast because of my flexibility. Sure wish I had it

now!!

> Here are some sites on it:

>

> http://www.ednf.org/

> http://www.orthop.washington.edu/arthritis/types/ehlersdanlos/01

>

> a

>

Thank You a, I have a friend that was diagnosed with this and I

am trying to read some info on it. Thanks again, in WA

[Guest guest]

CVS pharmacy has great sugar free gummy bears.

question

Hi list,

I've got a question. My son, 4.5 and dx of HFA, really enjoyed going door to

door on Halloween last year, and has already said things about his costume for

this year...We didn't let him gorge himself on candy last year, but we also

weren't on the protocol (or any other, for that matter) and we did let him

have some; i.e., one or two bite-size candy bars a day. Obviously, we won't be

able to do that this year, so I'm looking for ideas: sugar-and-dairy-free

candies and other treat alternatives that I can use to replace all that junk.

And where to find them. Thanks in advance,

Donna

[Guest guest]

Donna,

We solved the problem last year by paying our kids off! We let them Trick

or Treat as usual, then let them trade in the candy for Pokemon cards or

cash (so much for every 15 pieces of candy). Then Dad took the discarded

candy pile to work. The kids could use the money they got to buy treats

they could have, or toys (a trip to the dollar store makes my kids think

they are in heaven). Actually, this year my oldest has been nagging me

saying " Do we get to do that again? " . He thinks he got a great deal! Good

luck... I know this can be a tricky time for our kids.

Caroline

[Guest guest]

Stover's also has sugar free gummy bears and jelly bellys that are as

good as the " real " ones.

Staci

question

Hi list,

I've got a question. My son, 4.5 and dx of HFA, really enjoyed going door to

door on Halloween last year, and has already said things about his costume for

this year...We didn't let him gorge himself on candy last year, but we also

weren't on the protocol (or any other, for that matter) and we did let him

have some; i.e., one or two bite-size candy bars a day. Obviously, we won't be

able to do that this year, so I'm looking for ideas: sugar-and-dairy-free

candies and other treat alternatives that I can use to replace all that junk.

And where to find them. Thanks in advance,

Donna

[Guest guest]

I heard of one person who got little toys and such at the dollar store and gave

them to neighbours to give to their kids when they got to the door so that they

didn't have to deal with the candy issue at all. Also another I heard of had

the " halloween fairy " come and take the candy away that night and left toys in

place that the child really wanted.

question

Hi list,

I've got a question. My son, 4.5 and dx of HFA, really enjoyed going door to

door on Halloween last year, and has already said things about his costume for

this year...We didn't let him gorge himself on candy last year, but we also

weren't on the protocol (or any other, for that matter) and we did let him

have some; i.e., one or two bite-size candy bars a day. Obviously, we won't be

able to do that this year, so I'm looking for ideas: sugar-and-dairy-free

candies and other treat alternatives that I can use to replace all that junk.

And where to find them. Thanks in advance,

Donna

[Guest guest]

This may be a bit advanced for his age, but when my nephew couldn't tolerate

many of the things in Halloween candy, my sister would have him trade in the

candy for points or money he could use to buy something special at the toy

store. You might want to also consider giving some of your willing neighbors

stickers or little toys he might like for them to hand to him when we gets to

their houses so you don't have to trade things.

Gaylen

[Guest guest]

Thanks for all the great ideas!! The next several months are going to be

tough...I really appreciate having this list for support and encouragement!

Donna

question

Hi list,

I've got a question. My son, 4.5 and dx of HFA, really enjoyed going door to

door on Halloween last year, and has already said things about his costume for

this year...We didn't let him gorge himself on candy last year, but we also

weren't on the protocol (or any other, for that matter) and we did let him

have some; i.e., one or two bite-size candy bars a day. Obviously, we won't be

able to do that this year, so I'm looking for ideas: sugar-and-dairy-free

candies and other treat alternatives that I can use to replace all that junk.

And where to find them. Thanks in advance,

Donna

[Guest guest]

.....Ginber, I think that hang-up says it all.

gincur@... wrote:

Hi group,

Has anyone tried coral calcium advertised

on television by a Barefoot? He claims on the discovery channel

that 3 people with MS walked out of their wheelchairs and it is a cure for

cancer. He states that the AMA--New England Journal of Medicine made this

statement along with an article from the New York Times. l called the number

on the screen and asked what Journal and what date? They hung up on me.

Would appreciate any info you could supply on this issue. Thanks, Ginger

To unsubscribe, email: rheumatic-unsubscribeegroups

[Guest guest]

Hi, Barb!

Although many physicians do it, from what I've read, continually

repeating the rheumatoid factor (RF) test after the RA diagnosis has

been made has little value. RF is principally to be used to help make

the RA diagnosis, not monitor the disease. The following comment taken

from an October 10, 2001 HealthTalk.com discussion is on target, I

believe:

" Dr. Markenson:

There is one other point, though, that you ought to understand. Although

a high level marks you for possibly having more serious disease,

following the fluctuations in that level is a useless exercise. I have a

lot of patients coming to me saying, " Did my rheumatoid factor decrease

since you've treated me? " Or they get upset because maybe it rose a

little bit. And I think you would agree, Greg, that although a high

rheumatoid factor is a prognosis for maybe worse disease, the

fluctuation in that has no meaning. You have it once; that's the end of

it. It really doesn't pay to keep repeating it and trying to drive the

number down. "

http://www.healthtalk.com/rain/101001/toc/understand/03.html

Furthermore, I'm not sure we know all of the reasons that cause the

amount of RF to increase or decrease

[ ] Question

> Hi there,

> Well I went to my pcp today and went over the results of my

blood

> work. Everything came out great. I do have a question though. My sed

rate

> came down to 40 but now I have a negative in the rh factor where I

originally

> had a positive. I was wondering what would cause that to happen? Is is

that

> the meds are working? My originaly positive was not a high positive

but was

> positive none the less. I see the rheumy next month so I will get into

more

> about it then but I wanted to get some insight into why that would

happen.

> Thanks. Barb

[Guest guest]

> Just thought I'd post a note on this group to see if anyone knew

the

> answer. A friend of mine's son suffers from ADHD and now they say

he

> may have asbergers. He had strep last week and developed a tic

> afterwards. He was on amoxicillin and the doctors and pharmacists

> say that there was nothing dangerous about mixing his anibiotic and

> other medicine's. So why did he develop this tic (he's been bending

> his head forward and humming)? Will this go away? Could the strep

> have caused this?

>

> If anyone has any answers, maybe I could be of some help to a

> friend. Thank you so much.

>>>>I found out that only about 2 out of the many doctors her son saw

think it could be asbergers. So I also found out it could be caused

from something called " PANDAS " . Does anyone know anything about

this? Thank you,