(unknown)

[Guest guest]

Hi , Sorry to hear about the pain. My question to you is why did you

get off the sulfasalazine? I have been on this for about a year-- just

wondering what I have to look forward with all of these dmards. thanks, Diane

[Guest guest]

Hi Diane,

I was taken off the sulfasalazine because it caused me a lot of stomache

problems - I became bloated and gained 15 lbs in one week, severe stomache

cramps, gas. My understanding is that most people don't react to this drug this

way, but I don't react to anything the way they think I should.

P

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

From: DiCoghill@...

egroups

Sent: Monday, December 04, 2000 6:57 PM

Subject: Re: [ ] (unknown)

Hi , Sorry to hear about the pain. My question to you is why did you

get off the sulfasalazine? I have been on this for about a year-- just

wondering what I have to look forward with all of these dmards. thanks, Diane

[Guest guest]

Diane, ,

You wouldn't believe what sulfasalazine did to me. I had an awful allergic

reaction-high fever, rash-very short lived therapy. Arava made my hair

majorly fall out. I must admit that I don't get any of the

gastro-intestinal problems from any of them and my liver is fine! Also

don't get major relief either. Had my second remicade this week. I will

admit it's strange but now I've only got 1 VERRRRY painful knee. Maybe it's

going joint by joint. See rheumy tomorrow

Temple

Kuddle Kritters Farm

Chelmsford, MA

dat2352@...

http://www.homestead.com/kuddlekrittersfarm/index.html

http://www/homestead.com/kuddlekraft/index.html

[Guest guest]

Hi , I am new and my name is Debi. It hurts to hear somebody talk about

their pain ,when you have been there you can just feel it all over again.

Keep trying i am sure that the med for you is out there. 15yrs and the pain

is tolerable most of the time now.

[Guest guest]

Hi Dian and ,

I reacted the very same way as you did . When i told the Dr. he

said that it wasn't the drug causing the promble, but i knew that it was and

stopprd taking it.

Debi

[Guest guest]

JoAnn,

I'm glad you posted and also very glad that this group was of help to you. I

think this is an awesome group and even though my baby is finished with

treatment I stick around because this group is awesome.

Marci (Mom to )

Oklahoma

[Guest guest]

Wow, !

What relief you must feel! Hooray, Leigha!!!!!!!

Kendra in CanadaFor more plagio info, go towww.plagiocephaly.org/support...

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

From:

Plagiocephaly

Sent: Tuesday, June 26, 2001 1:18 PM

Subject: (unknown)

CROUZONS SYNDROME WAS RULED OUT ALONG WITH APERTS, CARPENTERS, PFIEFFER, AND SAETHRE-CHOTZEN SYNDROME!!!!!!!!!!!!!!!!!!!!!!!! I AM SO RELIEVED AND CAN NOT DESCRIBE HOW I FEEL...you can just imagine the enormous relief though. There is however a lot of good information that I gotconcerning bicoronal, left or right coronal) There is a syndrome they are testing Leigha from and it was just identified in 1997- my understanding is that it is just a genetic flaw on the FGFR3 that causes the coronal stenosis. No facial disfigurment or awckword growth other than the stenosis is found. The condition is called Muenke Nonsyndromic Coronal Craniosynostosis(named after the doctor who identified it.) The key element to diagnosing this - other than the blood test - is x-rays of the hands and feet because an abnormality described as thimble-like middle phalanges are present in this condition...it doesn't need correction and usually isn't noticeable to the untrained eye...its just just that the fingers are a little smaller. Leigha's X-rays showed her fifth middle phalange to be short(laymens terms: her pinky in the middle is a little shorter than average.) It is nothing that needs correction just probably means that she will have a diffucult time if she wants to play guitar of pianno when she is older.Girls with Muenke can be more severally effected than boys...i.e. Leigha had bicoronal that was quite noticeable and required surgery where as it is highly possible my husband had a slight case of left coronal synostosis that didn't disfigure him and hasn't been noticed until our daughter had this condition. Children that test positive for this gene have a 50/50 chance of passing it on. Also if the child test positive one parent could probably test positive as a carrier..meaning future pregnancy's have a 50/50 chance of having synostosis(but 50/50 is good odds...my hubby's aunt who has bocoronal cs had 4 kids without CS and her last born was the only one that she passed on the condition to. Also in 1997 this genetic flaw was found in isolated cases of Coronal stenosis along with familial cases. This is a relitivly new finding that some mommies of coronal babies might not have been told about - after all I was told since Leigha had more than one suture fused meant that she probably had a syndrom. Muenke is an abnormality on the FGFR3 gene whereas Aperts and Crouzons are on the FGFR4 gene but trust me I am no expert I only know what I have read and what was told to me. Take care...Love you all and I AM SO HAPPY!!!!!!!!!! This hopefully all means that Leigha won't need anymore surgeries other than maybe one touchup surgery. Thank you God!!the site given to me was www3.ncbi.nlm.nih.gov/htbin-post/Omim/dispmim?602849 - Kansas City, MO mommy of Leigha bicoronal stenosis-CVR with FOA 5/01/01DOC band 5/25/01For more plagio info

[Guest guest]

In a message dated 8/9/2001 6:52:14 PM Central Daylight Time, mmalfam@... writes:

the infant seats can be used until they are a year old...

Infant seats can be used until the child in question is 20 lbs. After that they are considered unsafe according to the directions. I had to buy new carseats way before I could afford them because my sons hit the 20 lbs. mark at 7 months of age.

Jill

[Guest guest]

I happen to agree with you, . I feel really bad for Marilyn's

depression (I too suffer from PPD) but her financial problems don't appear

to really be all that bad. If she really needs money I'd encourage her to

sell her house and move to an apartment. To sell one of her cars, or at

least downsize them to cheaper cars. Buy everything for her twins (and only

buying must have items) at a consignment place. I know one gets used to a

certain financial position, but sometimes a person just needs to bite the

bullet and do what they gotta do.

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

From: [mailto:mmalfam@...]

Sent: Thursday, August 09, 2001 4:50 PM

Plagiocephaly

Subject: (unknown)

Okay let me appoligize for jumping to replying but I think some

people here are thinking more with their hearts than with their

minds. Yes this is a support group but also remember this is the

internet. If you want to blow your money helping someone that is

used to being on a 6 figure income than so be it...that is your

personal choice. But I know there are several people that are part

of this group and have been part of the group for a long time that

couldn't even begin to dream of bringing in a 6 figure income. Yes

she lost it...but sometimes the fall to earth is hard to take.

Anyone, stop to think if her finacial problems were that bad how the

hell she afforded to go to a concert a few days ago and have tickets

for 5th row on the floor. Come on now, don't be nieve. I don't

think I have it that hard finacially yet to want this groups money

because obviously I still can afford the internet. I have been worse

off than we are at the moment....poor is that mom down the street who

has a kid with plagio and can't afford to take him/her to the doctor

to check it out because they don't have a car to get there. If you

have the drive in your heart to help someone finacially then check

locally....call up the local hospital and ask who you send the check

to. I am sorry if you all think this sounds heartless but stop and

think. THIS is a internet support group that is open to anyone who

can access . Kendra does not ask for details into your life

when you sign up for this group so don't you think that someone might

come along thinking that they might get money. Marilyn didn't ask

for it so I am not saying anything bad for her but I will not send

money and I think a lot of people that might be considering sending

money her way need to use their heads for two minutes. Bravo I

commend you for using your heart and wanting to help someone but

unless you have met her personally and know her story is truth and

they really are that poor...you have no clue to how bad they are

hurting. Someone that has lived with 6 figures is going to be shell

shocked and might have to learn that they can't live above their

means now but it's not going to hurt for her to have the internet

shut off and to learn to budget on what money her husband brings in

now. You might not want to do it but go apply at McDonnald's if you

are worried about your kids starving. I know being overqualified can

happen...it happened to my dad but he had to have the money so he

settled on working for Burger King for a few months while he

continued to look for a better job....my dad has a masters in

business and a bachelors degree in communications....believe me

Burger King was not his choice. We all have to crawl sometimes in

fact my unemployed husband has had to settle for being a CNA because

he was laid off again! We all struggle and get depressed....but

feeling sorry for someone that is depressed is only going to give

them more reason to stay depressed. You have to tell people GET UP

sometimes instead of saying I'm sorry! Don't look at me like I don't

know what I am talking about...my mother is the same way as

Marilyn...she has been committed over 5 times in her life and refuses

to take her medication because she gets more attention being

depressed. I know what its like to be down and some days its easier

to cry and say I give up! Giving Up is always the easier way, but

most of us here pull our selves through some hard times and if you

send money then if she does have a problem she will just expect more

money next month when what she is sent runs out. We all struggle

daily and a lot of people here are used to living on a signal

income. Marilyn you don't need new carseats next month if you can't

get them...the infant seats can be used until they are a year

old...look on the instruction sheet you'll find that out.

It sucks to want things that you can't have but as long as you learn

to budget you will be fine. Stop going out to the concerts if you

don't have the money to feed the kids....I know my husband and I only

can do things that are free at the moment. And the last time I went

to a concert was when I was a senior in highschool.

My point...think about it before you hand over your hard earned

money....I have worked for social services and I have seen those who

would rather be handed money instead of earning it. Don't make one

person rich overnight because you feel sorry for her. Friend or

not...don't let someone take advantage of you. If you are that

concerned about the kids needing clothes or formula and feel the urge

to help then send that...but money to support a 6 figure income will

hurt her more in the long run than it will help.

Think with your heads guys....internet has a lot of crud on

it...don't fall victem.

For more plagio info

[Guest guest]

,

Its funny you ask because my ped thought he was mild and CT thought he was moderate/severe. His ear was very misaligned, it looked like it was sliding off his head, and he developed a high "bump" on the right side. It looked to me like the flat spot pushed some "development" upwards into a high bump, with a flat back on the right (wish I took pics!). My ped told me don't worry, it will pop out in no time. He also has torticollis, tight neck muscle, which contributes to the ear being pulled down, as well as contributed to the flat spot since he favored one side. However, it is evident now, that he was squished inutero because there seems to be plagio on his 2nd day old pic, the left side is more sloped and the left eye is smaller (the left ear smaller also, with that one getting off alignment). My ped never told me he had plagio, and still thinks the tort created an optical illusion as he tilts his head sometimes, creating an off look. I decided to start now because I have read how quickly it can be done with, and I am glad I did (he started a week shy of 5 months). Now my ped thinks it was a good decision, because I told her with him in daycare, there is no way repositioning is going to work- I'm not there to supervise that.

His ear is just a smidge off, his eye is the same size as the other (the eye itself was never smaller, but the lid was droopier)and his jaw is symmetrical. That seems to come and go though, but for the most part, it always looks the same. He had big growth spurts because I would take him in weekly and they would shave away foam on every visit. They shaved it all the way down to just barely the plastic, and felt that since the facial features are resolved, the ear has come up, and he is definitely rounded out, he's done. I think you'll find yourself in and out of those appts. fast! They grow so much at that age, and I was like you, they said 3 months, but I wanted to go for 2! But, just a little under 3 months we can deal with.

Once you get into the swing of it, it goes by so quickly that another week isn't so bad! Good luck and sorry to be so long and on my soapbox! Hope in some round (excuse the pun!) about way I have answered your question! Keep us posted on your little girl! You'll be surprised how quickly you'll see results, I just know it!

Take Care,

' Mom

[Guest guest]

Kelli,

She is soooo cute!!! Wow - she looks older then 8 months with all of that

gorgeous, curly blonde hair! She looks like she really is an angel!

Thanks for sharing.

Marci (Mom to )

Oklahoma

[Guest guest]

Debbie,

Yes it is the sideburn part of the band. She had shaved some off of that

part already but I guess we needed a little more!

[Guest guest]

,

You did the right thing by leaving the band off. I'm sure the orthotist will

want to see as soon as possible for an adjustment. Let us know how it

goes!!

Marci (Mom to )

Oklahoma

[Guest guest]

,

Thanks for the update and good news about already showing improvement!

Hopefully this adjustment will solve the chubby cheek problem! LOL

Marci (Mom to )

Oklahoma

[Guest guest]

Took to have her helmet " shaved " today. They looked at her head and

noticed a little improvement in head shape and it has been only 6 days

since she has had it on. Her back left side bulge has rounded out a

little. It was nice to hear that.

Her little cheeks are doing ok, the redness has decreased greatly and

they said it was good that I removed the helmet like I did.

She was not happy to have the helmet back on though!

~ 's Mom~ DOCband 8/15/01

Wisconsin

[Guest guest]

Also, the plastic surgeon said has plagiocephaly but the clinic, after measuring and molding his head, classified it as Bracheocephaly. How does it affect the correction and the making of the helmet? Thanks in advance again for all the help!!

Mic:

The name of the diagnosis will not affect how the helmet was made. Plagiocephaly is a "generic" term used to describe a misshapen head. The band will be made in accordance with the mold taken from the casting of 's head. From the mold, they can determine which spots need "holding", and which spots need room inside.

I personally wouldn't worry too much about the "sideburns" holding too tight. If there isn't any redness that stays after an hour, it probably isn't too tight. Of course any concerns should be discussed with your clinician.

Good luck!

Kendra in Canadafor information on positional plagiocephaly, visitwww.plagiocephaly.org/supportwww./group/plagiocephaly..

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

From: korea_10017@...

Plagiocephaly

Sent: Tuesday, September 04, 2001 2:14 PM

Subject: (unknown)

Thanks all again for all the answers. was on and off the helmetfor 2 days (skin check) and we have decided to leave it off for today until wego to the DOC clinic tomorrow. I never thought there will be so many problems.:-)First of all, there are red spots, not too many, just around 2 that would goaway in an hour if he worn it for 2 hours but it he worn it for 3 hours ormore, the spot wouldn't go away in an hour. Last night before going to bed, wetook the helmet off and the red spot got so bad it took 12 hours to go away!!!So we decided to leave the helmet off today.Secondly, I know my son's case is a little more difficult than others becausehe has hemifacial microsomia which causes flatness in his left face. For somereason, he only worn the helmet for maybe 15 or 16 hours combined but Ialready feel the asymmetry in his face is getting worse!! I just looked at hishelmet carefully and I have some questions. The outer "shell" of his helmet is asymmetric, shaped just like his head, isthis the case for everybody? Ok, this half of this message is written after we visited the clinic today. I still have some questions. I have told them all the concerns and they had made adjustments the helmt but still the helmet is very close to his eyes and it kinda squeezes them and make the right one droopy. The sides of the helmet go all the way down to below his nose level and are very tight on the cheeks. Is that the case for everybody?They told me the helmet has to sit on the eyebrow for support but s' goes lower than that. And you know how baby has chubby cheeks, the sides of the helmet kind of tight on that as well. THey told me that's also for support. I just want to see how everybody's helmet is like and whether this will affect the growth and shape of the eyes and cheeks. Also, the plastic surgeon said has plagiocephaly but the clinic, after measuring and molding his head, classified it as Bracheocephaly. How does it affect the correction and the making of the helmet? Thanks in advance again for all the help!!MicFor more plagio info

[Guest guest]

,

I cannot tell you how much your story sounds like mine. I am a first time

mom. I noticed the flatness of 's head when she was 4 months old and was

told by my ped that it would round out on its own. We finally got the ped to

take action when Meg was 7 months old. We did not get through all of the

appointments and get the actually helmet until was 9 months old. We

also did not use a band, but used a helmet. The casting process that

went through was very similar to that which is used for the DOC or STARband.

did not have to have her eyes covered during the casting process, but I

don't know how your orthotist will handle it. The whole thing took less then

10 minutes and she handled it pretty well. I would suggest bringing another

set of hands along - one person to hold and another person to

" entertain " . Bring along a pacifier (if you use one), a bottle, favorite toy

or blankie and some toys that make noise or music. You might also need some

bath supplies for a quick clean up after the casting. We did not have to do

that part - it was quick and fairly clean, however, most of the other people

I have talked with said that a quick bath afterwards was necessary.

I'm so glad that things are getting underway for you and . You will be

amazed at how well adjusts to the whole thing - babies are so

incredibly adaptable!!! Best wishes and please let us know how the casting

goes - I'll be thinking of you on Thursday.

Marci (Mom to )

Oklahoma

[Guest guest]

My son got his helmet thru the Childrens Hospital in Oakland, Ca.

While people talk about how horrible it was...our procedure took 10 mintues..and it was FUN ! We took both twins, and made it a family photo day. smiled, and played and after they fitted the elastic that goes under the cast...it was 10 mintues total !!

NOT BAD !

Karla

Mommie to

(Helmet on 9/01)

and

Kirsten Grace

born 2/20/01

California

[Guest guest]

In a message dated 11/18/2001 5:07:50 PM Pacific Standard Time,

numbthumb2@... writes:

> You

> will be amazed at how much more you will use your wit , your logic, to

> get where the " normals " have to rough it to

I can't tell you how many times people have rused past me only to get to a

locked door. Awww but I knew it was locked because I pay attention.

jenny

[Guest guest]

God bless you and hang in there. I could feel your frustration through your

note. I am now in a situation of having chest pain which is not cardiac (had

cath and stress test) but continues. And I, too, have been up several nights

recently with chest pain, etc. just waiting for first light, so to speak. I

will pray for you.

[Guest guest]

> I would communicate with Dr. Dick Loyd for initial advise & get a saliva

> test kit from him. Also consider

> the material from www.sotainstruments.com with their Beck protocol.

>

> Stan.

>

P.S. Also consider FO with CC.

[Guest guest]

Hi - welcome to the group i am fairly new to the group myself. God

some doctors just don't have common sense when they open their mouths.

Please keep us posted to your and s progress. I wish you lots of luck.

Kerry

Marcus (3) Dylan (1)

Calgary,Canada

>From: " cherryrype " <linda68@...>

>Reply-Plagiocephaly

>Plagiocephaly

>Subject: (unknown)

>Date: Mon, 01 Apr 2002 13:57:04 -0000

>

>Hi all.. I just joined this group tonight so thought I would send a

>quick message to say hi and introduce myself, My name is and I

>am in Australia, I am a single mum to 4 darling children and my

>youngest (22 months) has positional plagiocephaly.. The back

>of his head was totaly flat for a long time,but as he has gotten

>older it has gotten a little rounder.

> was born with a cleft palate and feeding him was hard,, and

>whenever I popped him on his tummy he brought up everything I had

>worked so hard to get him to eat so he was always on his back.. Also

>he has some developmental delays and has never rolled over or

>crawled,, (or even walked at this stage),so his only mile stone has

>been sitting at about 8 months of age,and up untill then he was just

>on his back. Anyways that explains the cause of the positional

>plagiocephaly ,I always thought it was just his head shape till after

>his palate surgery (at 10 months old) a team of doctors came to look

>at him and his surgeon rolled him over to point out his " extreme

>plagiocephaly " (to quote his words) to the other doctors.Like this

>didnt freak me out enough one of the other doctors had to add with a

>wise nod " oohh yes,, cot death head " ,how insensitive is that? I had

>no idea what this was and now they were discussing cot death and my

>son in the same sentence .As you can imagine I totaly freaked at this

>point and demanded to know what they were talking about,,and was

>greatly relieved once they gave me a brief explination(and I mean

>very brief!!).So we plodded on for another few months with me

>thinking that was the way his head was and would be and thats that.

>But now with his developmental delays we are seeing a new doctor who

>pointed out that not only his head very flat at the back but

>also " lopsided " when looking at him from the front so we are waiting

>now for an appointment with the craniofacial dept at the hospital.

>Anyways I think after that long winded introduction I will cut it

>short and just say hi to everyone in the group and looking forward to

>getting to know you all.

> and family )

>

_________________________________________________________________

Send and receive Hotmail on your mobile device: http://mobile.msn.com

[Guest guest]

Hi and welcome - I'm glad you have joined us. Sorry to hear about the

insensitive dr and the comment about cot head death. That would have freaked

me out too. Let us know how your appointment goes with the specialist.

Marci (mom to )

oklahoma

[Guest guest]

At 01:11 AM 5/26/2002 +0000, you wrote:

>I am considering throwing out the

>mayo and the ice cream. Of course I hate like crazy to do that. Has

>this happened to anyone else. Any suggestions?

I'm probably in a minority on this, but my take is that if you eat raw egg

yolks, they should be fresh out of the egg (like in a shake). Some number

of raw eggs DO contain salmonella, and it is almost always on the eggshell

(no proof on this, just my thoughts from having chickens). I've eaten

plenty of FRESH raw eggs (mostly in cookie dough, in my case), and my

husband used to have them every morning, and my fried eggs aren't cooked

very much, and I eat 1-minute soft eggs, and I've never gotten sick off

those kinds of uncooked eggs.

If you put a little vinegar or baking soda on the shell before you crack

it, and eat it right away, the bacteria don't have a chance to multiply,

and if your immune system is good the small amounts of salmonella that may

be present can be overcome, and you are probably pretty safe. Esp. if you

eat probiotics with your meals! But if they are opened and sit for any

length of time, esp. at room temp or at the temp of many refrigerators

(which often heat up when you put something not cold into them), then the

bacteria multiply and you can get pretty sick.

I only had this happen once, from some Waldorf salad I made in a bowl that

had contained raw-egg cookie dough, that sat out for 2 hours at room temp.

I have great respect for the ability of bacteria to multiply! I don't know

what was in your mayo, but all my dressings and dips now contain lots of

lemon juice or vinegar or tomatoes or lacto-fermented something. Anything

" wet " that doesn't have one of those acids or live good bacteria gets

heated up real good after it comes out of the fridge.

Heidi Schuppenhauer

Trillium Custom Software Inc.

heidis@...

[Guest guest]

> >I am considering throwing out the

> >mayo and the ice cream. Of course I hate like crazy to do that. Has

> >this happened to anyone else. Any suggestions?

>

> I'm probably in a minority on this, but my take is that if you eat

raw egg

> yolks, they should be fresh out of the egg (like in a shake). Some

number

> of raw eggs DO contain salmonella, and it is almost always on the

eggshell

> (no proof on this, just my thoughts from having chickens). I've

eaten

> plenty of FRESH raw eggs (mostly in cookie dough, in my case), and

my

> husband used to have them every morning, and my fried eggs aren't

cooked

> very much, and I eat 1-minute soft eggs, and I've never gotten sick

off

> those kinds of uncooked eggs.

>

> If you put a little vinegar or baking soda on the shell before you

crack

> it, and eat it right away, the bacteria don't have a chance to

multiply,

> and if your immune system is good the small amounts of salmonella

that may

> be present can be overcome, and you are probably pretty safe. Esp.

if you

> eat probiotics with your meals! But if they are opened and sit for

any

> length of time, esp. at room temp or at the temp of many

refrigerators

> (which often heat up when you put something not cold into them),

then the

> bacteria multiply and you can get pretty sick.

>

> I only had this happen once, from some Waldorf salad I made in a

bowl that

> had contained raw-egg cookie dough, that sat out for 2 hours at

room temp.

> I have great respect for the ability of bacteria to multiply! I

don't know

> what was in your mayo, but all my dressings and dips now contain

lots of

> lemon juice or vinegar or tomatoes or lacto-fermented something.

Anything

> " wet " that doesn't have one of those acids or live good bacteria

gets

> heated up real good after it comes out of the fridge.

>

>

>

> Heidi Schuppenhauer

> Trillium Custom Software Inc.

> heidis@t...

Hi Heidi,

My homemade mayo and ice cream was straight out of NT with no heating

involved. The eggs for the mayo were supposed to come to room

temperature, which they did. Maybe that was the problem? They sat out

for a least an hour before I thought they were room temp.

This morning I checked out information about salmonella and it jarred

my memory. I remembered eating some lightly cooked ground beef from a

large local health food store, which will go un-named. It had an off

taste, which was disgusting, and I couldn't even finsh it. I threw

away the rest. I have gotten used to grass fed beef and now have

learned the only way to eat grain fed, when it is all that is

available, is well done. So perhaps the source of my illness was the

undercooked beef and not eggs at all! I like to belive this, but

realize I am taking a risk if I try the ice cream or mayo again.

I do take probiotics every morning and every night. My doctor said

they are more effective if taken without food. I have never thought

of taking them with raw foods. Since I eat a lot of raw foods this

might be a very good idea. Sounds sensible to me.

I normally have two egg yolks in a shake every morning. They are

straight out of the shell. Wouldn't a vinegar rinse cause the egg

shell to be more porous and then the bacteria could perhaps enter the

egg with more ease? Does it actually kill it fast enough to prevent

this problem? I use white vinegar for cleaning around the house all

the time, but I normally let it sit a while on a surface. It is cheap

and effective. A few drops of lavander oil kills some of it's strong

odor.

Thanks for the reply,

Sheila