new

[Guest guest]

Hi ,

Fibromayagia usually starts off slowly and gets progressively worse. Chronic

Fatigue Syndrome sometimes starts off fast with something like the flu, then

they both settle out and look just alike. Garth Nicolson is finding that 70

-80% of FMS AND CFS are infected with some form of systemic mycoplasma. So

whether you have RA or FMS or CFS there is a good chance that the correct

antibiotics will help. The trick is to find a doc who will treat you. I

believe Adlard has a nice list that covers much of the US.

Your friend,

a Carnes with CFS, but who knows.

Ok it worked, Hi i'm . Try to introduce myself here,ok i'm a 28 yr old

mom of 2, i've had problems since i was 18, i've been diagnosed with arthritis

at 21 but not rheumatoid,but my knees is where i started having problems,as in

popping,achey & at times they give out on me. That was back in 1992,in 1995 i

started having problems in my back,it's sort of a stabbing/burning feeling,gets

so bad i can hardly breathe,1996 i was diagnosed with carpral tunnel syndrome in

my right wrist but in the end of 1997 it was my whole right shoulder

achey,popping real bad & hurts almost all the time,in the beginning of 1998 my

left shoulder was affected the same as my right,my belief is if it was

fibromaylagia wouldn't it have happened all at once? or could it progress

through the yrs like it did? also i have these attacks where i'm badly

fatigued,achey (like i have the flu) hot/cold flashes, what do u think? The dr's

where i live are quacks,they look at me like there's nothing wrong so therefore

don't help me, i got to looking cause i've had a bad 4 days this past wk, any

input would be appreciated,

[Guest guest]

- I have been dx'd with fibro/fatigue/myofacial pain and almost every

afternoon I start to feel like I have the flu. Every few weeks I go thru spells

where the flu/fatigue is overwhelming. I get hot/cold/hot/cold and I end up in

bed for several days. As I understand it symptoms of fibromyalgia and chronic

fatigue will worsen, and you will get more of them over time, if there isn't

aggressive treatment of the perpetuating conditions in the beginning. I also

have problems with one knee swelling and recently was dx'd with scleritis

(inflamation in the eyes) which often comes with autoimmune disorders. I

understand the frustration of trying to find a good doctor. I finally found a

nurse practitioner that has been the most help. She got me into specialists as

she saw things happening to me and takes the time to listen. She has never once

discounted anything I had to say. The stabbing burning, carpel tunnel, joint

pain you talk about are all parts of Fibro and Chronic Fatigue but certainly

could be other things. Most recently there has been some more study that shows

microplasms (or whatever you call this) are a possible cause of Fibro and

Chronic Fatigue and antibiotic treatment might be helpful. What has helped me

the most has been seeing a physical therapist, weekly massage, daily stretching

and following a lot of Dr Mercola's diet info that is available on his web site.

There are a lot of dr's, etc. who write about fibro and fatigue. The best I have

found on fibro are things written by a Dr. and on fatigue a Dr. Garth

Nicolson. If I can give you any more info let me know. There are several people

on the list that have helped me with information and I can't remember all of the

names but one is Jan, who also has fibro. Also, Ethel is very helpful and might

be able to point you in the direction of a doctor in your area. She's how I

found out about Dr. Mercola and his web site. Sharon

rheumatic New

Ok it worked, Hi i'm . Try to introduce myself here,ok i'm a 28 yr old

mom of 2, i've had problems since i was 18, i've been diagnosed with arthritis

at 21 but not rheumatoid,but my knees is where i started having problems,as in

popping,achey & at times they give out on me. That was back in 1992,in 1995 i

started having problems in my back,it's sort of a stabbing/burning feeling,gets

so bad i can hardly breathe,1996 i was diagnosed with carpral tunnel syndrome in

my right wrist but in the end of 1997 it was my whole right shoulder

achey,popping real bad & hurts almost all the time,in the beginning of 1998 my

left shoulder was affected the same as my right,my belief is if it was

fibromaylagia wouldn't it have happened all at once? or could it progress

through the yrs like it did? also i have these attacks where i'm badly

fatigued,achey (like i have the flu) hot/cold flashes, what do u think? The dr's

where i live are quacks,they look at me like there's nothing wrong so therefore

don't help me, i got to looking cause i've had a bad 4 days this past wk, any

input would be appreciated,

[Guest guest]

Dear Lonnie,

I understand all the things you are talking about. If your problems were all coming from the Chiari Malformation, I would have hoped the surgery would have brought great improvement by now. I am wondering if perhaps you have something else wrong.

Have you ever been bitten by a tick? Do you live in a tick area? Lyme disease can cause all sorts of weird symptoms and the tests are not reliable. I have been diagnosed as having CFS, fibro, possible MS, multiple chemical and food sensitivities for 23 years. Mine turned out to be Lyme disease which I believe I got from my ex-husband. Lyme can be sexually transmitted.

You might like to check it out. You could ask your doctor for a blood test. If the test comes back negative, you could still have Lyme. Do not give up. There must be a reason for your symptoms.

HTH.

Rosemary.

-- rheumatic New

Hi everybody!My name is Lonnie and I am looking for some help in my quest to find out what is going on with me. I am 35 years old. I have been having problems for about 4-5 years. It all started with tingling in my hands. From there I have went downhill ever since with few periods of somewhat wellness. I have been dx'ed with MS, Lupus, Fibromyalgia, Arnold Chiari Malformation, CFS, anxiety, among several that I am sure that I have forgot. Recently I had posterior fossa decompression surgery on 2/21/02. I then developed a CSF leak that resulted in a staph infection and I had to have more surgery on 3/22/02. I still have the muscle weakness, severe fatigue, and general malaise feeling. I have had just about every test that there is and the abnormal results that I had is an ANA titer of 1:320, lesions on my brain, and Chiari Malformation. I haven't had any recent tests and I was wondering if they could change. I haven't had any CBC or lab work in quite awhile. I am getting desperate and would like any input on what I should do. Thanks for all replies.Lonnie in Soonerland To unsubscribe, email: rheumatic-unsubscribeegroups

[Guest guest]

One of the best ways to get a quick overview is to read this FAQ

file:

http://www.houstonni.com/pages/enzyme_faq.html

Most people do see some improvement with enzymes. Peptizyde is the

only product for use off the GFCF diet for the casein/gluten issue.

But there are several products for trace amounts of casein/gluten on

the GFCF diet. In addition, there are a range of products for

general digestion or special issues, such as yeast. I will send you

some of the basic information on what to expect when starting

enzymes and how to read a product label.

Please post any questions you have at all.

.

[Guest guest]

Hi and welcome!

Do you know that in Michigan there is the Kaufman Center.

http://www.kidspeech.com Kaufman is an expert on apraxia and

has a test and therapy cards made by her. All her Slps are trained.

If he has a formal diagnosis of apraxia by an MD it may be easier to

get services whether it is through the school or privately.

I was told by my pediatrician, " you don't need a neuroligist " , keep

doing therapy and he'll be fine. That may be true for a late talker

but if a child has apraxia other issues may come into play. For

example my son has low tone. Not discovered until he was over 3. This

led to receiving OT services through the school.

Our first neuroligist knew enough that my son was apraxic but since

my son was no very cooperative the visit was not so helpful. Our

developmental ped. quickly established a rapport with my son,

specializes in communication disorders and even administered some

speech test which confirmed it.

In terms of getting it all under 1 roof. I don't know of any

resources in Michigan other than contacting the Children's Hospital

to see if they have child study teams to evaluate kids. Maybe someone

here can recommend a good hospital.

Good luck and ask away!

denise

--- In @y..., " crlonas " <christine_lonas@h...>

wrote:

> Hi, I'm new to this group. I am the mother to two children, a

> six-year old daughter who was advanced with *everything* and picks

> up foreign languages like you wouldn't believe! My 35 month old

> son, however, has high intelligence, but he doesn't have the

> vocabulary to express himself.

>

> We live in Michign and receive Early On services, which is made

> possible by part c of IDEA, and every state should have something

> like Early On reaching out to kids under five with disabilities,

but

> each state might call it something different. Anyhow, with the way

> services are carried out in Michigan we receive a home visit each

> week from a trained teacher, a playgroup/parent support group each

> Friday, and in January will attened a preschool through the

> ISD.

>

> It was through our home visitor that I learned a bit about

apraxia.

> Our home visitor was the one who brought it to my attention that he

> sounded apraxic. And, after researching it I am quite confident

> that is indeed what my son has. I do wonder if some of his

problems

> as an infant were a part of the apraxic problem as well...but, I'd

> like it if a few of you parents could offer me suggestion based off

> of a few comments/questions.

>

> 1: if I'm confident about him having apraxia, why should I bother

> with having a neurologist " certify " him as being apraxic?

> 2: if we decide to take my son to see a specialist, whether speech

> or neurologist, where is the best place in Michigan to go? If we

do

> pursue something like further speech services than what our school

> system can offer or if we do decide to see a neurologist I would

> want to go to someplace with a pediatric neurologist and speech

> therapist highly knowledgeable in apraxia all under one roof.

> 3: it's easier for me to look back upon my son as an infant and

> wonder if all of his HIGH pitched screaming, instead of babbling,

> for what he wanted, was a part of the early signs for apraxia. I

> wonder if his frequent bouts of asthma, his need for nebulizer

> treatments, constant, above normal amounts of spitting up, and

> _long_ bouts of diarrhea were also a part of the 'hidden' picture

> for him, or just unrelated coinsidences(sp)? Have any of you

fellow

> moms experienced the same with your apraxic child?

>

> Thank you.

> Love and God Bless,

>

[Guest guest]

Hi and welcome to the chat group!

I am new to the chat group,too. It does sound like your son has

verbal apraxia. Because I have been looking for a relationship

between apraxia and kernicterus(motor damage from jaundice) I

wondered if maybe your son may have had bad jaundice in the first

few months of life(especially the first 10 days). Although my son's

kernicterus and apraxia has never been linked together -my son had

that high pitched cry the first year or so of life, and spit up much

of his milk the first six months, and had much difficulty with

sucking and chewing and swallowing the first year.

My 7.8 year old son is apraxic(diagnosed just recently at our

Children's Hospital Speech and Hearing Department by a speech

pathologist. (I believe Children's Hospitals are the best place to

go for diagnosis- it was missed by at least 6 speech pathologists

during his 6 years of speech therapy). Diagnosis is the best thing

that could happen to your son if he is apraxic because the speech

therapy is completely different than if he isn't diagnosed with

apraxia. At around age 8 to 9, children become less pliable in

responding as quickly or completely to speech or other professional

treatments. Therefore, diagnosis is extremely crucial for children

with verbal apraxia!

Good Luck!

[Guest guest]

" ----- 1: if I'm confident about him having apraxia, why should I bother

with having a neurologist " certify " him as being apraxic? " I would want to

see a neurologist just to be on the safe side that nothing else was going on.

Our peds. neuro is the person who referred us to everyone and is still the one

who leads the charge when I need things done. The pediatrician is wonderful, he

will write anything I ask him to and has read my papers on Apraxia but knows

very little about the condition. I like having the MRI to rule out anything

that could be causing my sons problems. Everything came back normal.

" wonder if his frequent bouts of asthma, his need for nebulizer

treatments, constant, above normal amounts of spitting up, and

_long_ bouts of diarrhea were also a part of the 'hidden' picture

for him, or just unrelated coinsidences(sp)? Have any of you fellow

moms experienced the same with your apraxic child? " My son has asthma but he

started showing signs of this after a horrible bout with RSV at the age of 12

months. He did seem to keep upper resp. infections in the first year of his

life, I breast fed and he didn't even go into the church nursery, he did have a

21/2 year old brother. Due to his lack of muscle coordination, he doesn't chew

well and this definitely caused him to eat baby food until he was almost two

because he would spit up/throw up with solid foods, trying to swallow things

without chewing. At the age of 14 months I requested he be put on Reglan

because he seemed to be having such reflux and it did help. He was on it for

about a year and at that time he was chewing better and the reflux was almost

gone.

God Bless.

Daphne

Mom to 3 boys

[Guest guest]

Hi Robyn,

Have you looked to see if there's an AP doc in your area? If not,

this board has a doctors list that they might be able to help you with.

If you don't have an AP doc near you, here is what I did. I live

in the Cayman Islands and there are no AP docs down here. I printed

out all the relevant info on the website about AP and took "The New Arthritis

Breakthrough" book to my GP doctor and told him this is the therapy that

I want to try for my RA. I would love it if you would be willing

to help me with it. If you are not willing then I will find another

doctor who is. This made him sit up and take notice that I was serious

about this. He did try to get me to try methotrexate but I refused...said

it was too toxic and I wasn't willing to take that risk. He asked

me to give him 10 days to read all the literature and go through the book.

At the end of 10 days I made an appointment with him and we talked.

He said he was willing to try it if that's what I wanted to do. I've

had to direct him in my treatment (which is a weird feeling...LOL) but

it has been a good relationship. He has balked at a few things I

wanted to do but all in all he's been a great doctor to work with.

The best thing is to get an experienced AP doctor if at all possible.

If it's not possible, then find a doctor who is willing to help you.

But please be prepared that it is harder to not have an experienced AP

doc and do it on your own.

Stay close to this board and let us know how you are doing. There

are lots of experienced people here to help advise you. We're not

doctors, just patients with experience in AP. Come to the chats too!

They are a great place to talk with people who have been through this and

get support and advice. We are chatting this afternoon at 3:00 p.m.

Eastern Time and Thursday night at 9:00 p.m. Eastern Time.

Jeanette

Robyn & Mike Ferrario wrote:

Hi

Everyone,

I

found your site yesterday when searching for info on Minocin

(yeah!!!). I need to fast track “minocin therapy”

and have access to my GP only (live in a rural community in BC). My rheumatologist poo-pooed

my request to try minocin, rather wants

me to try Enbrel and methotrexate

combination. Due to history of side effects from plaquenil,

gold (oral and shots) and mtx, and the fact

that Enbrel is too new, am in a quandary

as to how to proceed.

Long

story short:

51

year old female with 11 year history of RA (severe, affecting most joints).Treated

presently with Arthrotec 50mg TID, Codeine Contin

100 mg BID aaaandMethotrexate

20 mg weekly. I have had many gross side effects from mtx

and so this year have been weaning off, starting by taking it every 2 weeks,

then 3 and presently have gone 5 weeks (just can’t make myself swallow

the stuff). I also have hashimoto’s hypothyroid,

diagnosed July 01 but have had symptoms for at least 2 decades and currently

taking Thyroid (desiccated) 4 grains. Am also taking

hydrocortisone 20 mg/day, divided for adrenal maladaption/insufficiency.

Interestingly

enough, I have had no flares since stopping work one year ago and starting

thyroid supplementation. I seem to be in a holding pattern for now (touch

wood).

Thanks

for any input, I’m so glad you’re here!!

Robyn

To unsubscribe, email: rheumatic-unsubscribeegroups

[Guest guest]

Hi Robyn,

In addition to what Jeanette already said, all of which I agree with,

you may want to tell your doctor that the American Arthritis Society

lists Minocin as a dmard, in the same category as methotrexate, however,

Minocin is much safer. You, as a patient, have a right to control your

treatment, your doctor is violating nothing by prescribing this for you

and if he won't, go elsewhere. Most of us have found rheumies to be the

most resistant and unwilling to listen, I think mainly because the AP

doesn't work quickly and sometimes requires a little hand-holding and

patience, something most rheumies won't take the time to do. I know

mine wouldn't so I now I don't go to him, saving him time but costing

him money (the ultimate revenge LOL). I get my mino prescription from

my GP and have found along the way that when I had a question he

couldn't answer, generally someone on this group could. So, educate

yourself, try to educate your doctor and do whatever you have to in

order to get that prescription. We can help with much of the rest.

Best of luck.

Hugs

a

[Guest guest]

hi where r u in michigan, i would like to talk 2 u further about apraxia, my

almost 3 yr old daughter has it and im feeling like the only one in traverse

city and i need someone to talk 2 who is going through this too

thanks krysty

crlonas <christine_lonas@...> wrote:

Hi, I'm new to this group.

We live in Michign and receive Early On services, which is made

possible by part c of IDEA, and every state should have something

like Early On reaching out to kids under five with disabilities, but

each state might call it something different. Anyhow, with the way

services are carried out in Michigan we receive a home visit each

week from a trained teacher, a playgroup/parent support group each

Friday, and in January will attened a preschool through the

ISD.

[Guest guest]

<<He vomits several times daily from stress, then

has severe chest pain for his esophagus going into spasms because of a

lesion that reacts to stomach acid from the vomiting. I know I sound

confused, but am trying to give a good picture. Anyway, any help or

advice would be appreciated.>>

, I had a student several years ago with exactly the same problem. No

confusion here. I don't know much about enzymes yet, but as far as the

school goes...can they send a teacher home for him, until the esophagus

thing clears up? We called it " homebound teaching " in our district, it was

only one hour a day but kept them caught up until they could return. Also,

my student was on several meds to help control the vomiting, and also

anti-anxiety meds, they helped in a pinch. In any case, we didn't try to

keep him in school when it got that bad. Is the school cooperative?

M

[Guest guest]

Hi Kerry,

can't help with your questions but hope someone on here can,

but,

Welcome !!

good to have you here !

Julea )

[Guest guest]

Haven't tried that brand of enzymes. We use Houston enzymes, and we are very

happy with the results.

new

Hello, I am new here. I am the mom of a 5 year old boy dx'd pdd-nos.

I just did a hair analysis on my son and he showed high lead, tin ,

and antimony. I have just started him on extremehealthusa.com's

digestive/enzyme formula. Has anyone else here tried it? We are

prepping his body for chelation...

-Kerry

[Guest guest]

Hi Kerry,

You might want to c/o the autism treatment site for info regarding

chelation and detox. You don't have to join to c/o the files......lots of info

there!

Hope I helped, R

[Guest guest]

,

ALA (alpha lipoic acid) is a chelating agent which gets mercury out of the

brain. There's info about it in the files and FAQs of this list.

S

From: Theriot [mailto: theriotr@...]

Date: Wed, 27 Aug 2003 19:55:21 -0500

Subject: [ ] new " kind of "

<html><body>

<tt>

i first joined this group about a month ago when my dan doc had us start the mt

primer before mt promoter. after some reading, i asked whether we were wasting

our time with the mt promoter.  andy responded " yes. "    so i researched a bit

more and found that with my son's extensive gut problem. it would be a good idea

to at least try mt promoter before chelation.  andy was NOT wrong. but as i keep

realizing and keep forgetting - every kid is different.  my doc has worked

closely with dr amy.  their experience, at least when it comes to kids that are

having brain seizures like my tom, without a healed gut chelation may cause more

seizures.  anyway, so we are doing lamictal for the seizures ( we are about 1/8

of his total dosage at this point).  we are doing the mt-primer so we can soon

do the promoter. my dan doc sya we try this for maybe 8 weeks.  if it doesn't

help. we move on. i guess in the very least, it ups the necessary stuff in his

body to protect him from the bad side of chelation.  my question- i guess

finally is really one of hope - my tom who is so affectionate, so happy, but

also non verbal. will he ever talk?  he definitely got mercury and his body

could not get rid of it.  it is in his brain thus the seizures.  if we can

possibly get the mercury out of his brian , (how?) will he be able to talk?  how

much damage is irreversible? laura, mom to joe, typical age 5, mom to tom, mild

autism,age 3. thank you. <BR>

<BR>

[Guest guest]

<<<<<<< I am hoping to get a lot of useful information and support from all

the " seasoned " parents. laura crosby>

Hi, ,

welcome to our little and warm community!

F

[Guest guest]

Hi Hillary and Welcome to the group!! You have a beautiful family!!

Some of those pictures just cracked me up, mostly, " green pea soup "

lol It sounds as if you have a wonderful sense of humor, which you

would have to, with as much as you have on your plate.

My daughter was also a preemie, 6wk 5days, she spent 7 days in NICU,

unlike you whe had wonderful nurses caring for her and I knew

everything they were doing to her. Also, the nurses in NICU

encouraged me and my husband to only come twice a day and at the most

(if at all possible) 3 times a day. We were always there though,

except at night because I have 2 older girls that were in school.

What a shame that you had to deal with nurses like this. This being

said, I really couldn't tell any shape problem with Corbyn's head

until I looked at the top view. It looks just like my daughters did

before treatment. They considered this Scaphocephaly, very commom in

premature births but there are pictures in our photo section of

Lorenzo who had scaphy, he was not a preemie. If you can, please

take a look at -Dustie and Lorenzo's pictures, there are before

and after banding pictures. It is extremely difficult to reposition

a scaphy headshape, but of course not impossible. I'm not sure what

direction you are wanting to go with this or any direction at all,

but if we can help any way, just let us know. Where are you

located? Maybe somebody is in your area and can help with a

specialist.

Dustie, mom to , DOCGrad'03

Texas

--- In Plagiocephaly , " Steve Barlow " <sbarlow@m...>

wrote:

>

> i am new here not sure if i belong but i and another friend are in

search of answers regaurding our sons a another online friend gave

her the link to here and she in turn gave it to me

> my name is hillary i am 31 mother to 6 gorgeous childern 5 boys 1

girl my youngest son corbyn is the one i am having concerns about he

is nearly 5mos come the 16th at birth he was considering premature

though by my calculations he was 37wks exactly spent a hellish week

in the nicu in which i fought to get him released i have all that on

my site under corbyns birth link , since birth he didnt open his left

eye much at all we used to think he was glaring at us my husband

and friends would joke but as he grew his head never seemed quite

normal and something about him seemed a bit off i had him evauled for

craino they said with out a doubt his sutures are still open but to

date he looks lopsided

> his left eye rarely opens as wide as his right , his face seems

just a bit off and he keeps it tilted funny though he can move it i

think normally not sure why he does that its very noticable when he

is laying on his belly looking up how his eyes dont quite match up

from the tophis ears dont seem to align to me he has a ped check

tomorrow and i am worried my friend says i should definatly get that

checked out she was one that noticed his eye were off even though i

had never told her and her son has the same thing he is getting

pyhsio for the one that gave her the link here has twins her son is

in what i beleive is a doc band for the same condition anyhow that is

how i got there in search of answers

> i hope you dont mind me being here and not being sure he even has

it as of yet but i am unsure where to start and exactly what i need

to push for if his ped doesnt seem to see what i see and i guess if

you could look at his pics and tell me what you think i understand

your not drs just unbaised opinon might be more helpful

> thanks

> hillary mom to corbyn

>

> http://64.216.130.105/hilly/corbyns.htm

[Guest guest]

kansas city missouri i sort of deal with postional molding with my son gabriel his head got very flat kaiser

flat out refused to help us at all saying it was only cosmetic and his problems were actually rather minor no facial signs just a flat head which with the help of ot twice a week till he was 10 mos it pretty much self corrected i just dont want to seem like a nut when i go in there and want a speicalist to look at him and tell me he i odd but normally odd looking i just have felt soemthing about him has been a bit off i just worry it will get worse and kids will make fun of him because he looks a it lopsided until others started to notice i sort of chalked it up to just odd but normal now i am concerned its and coudl it get worse

he sleeps on his belly and i cant see how repostioning him would change his head shape, are babys heads suppose to be round? i mean all of mine were rather nice and around not soo long and trinagler and in teh back of his head there is a funny buldge its not photographable and he has the biggest soft spot i have ever seen on a baby and it doesnt seem to have closed at all and i nkow his head growth has slipped from where it was at birthslwoly but surely down the charts, that said i think he is perfect and adorable he cracks me up he is funny little guy i just hate to ignore this and it have been something i could have fixed or treated

thanks soo much for your help

hillary

Plagiocephaly

Sent: Tuesday, November 11, 2003 8:47 AM

Subject: Re: new

Hi Hillary and Welcome to the group!! You have a beautiful family!! Some of those pictures just cracked me up, mostly, "green pea soup" lol It sounds as if you have a wonderful sense of humor, which you would have to, with as much as you have on your plate.My daughter was also a preemie, 6wk 5days, she spent 7 days in NICU, unlike you whe had wonderful nurses caring for her and I knew everything they were doing to her. Also, the nurses in NICU encouraged me and my husband to only come twice a day and at the most (if at all possible) 3 times a day. We were always there though, except at night because I have 2 older girls that were in school. What a shame that you had to deal with nurses like this. This being said, I really couldn't tell any shape problem with Corbyn's head until I looked at the top view. It looks just like my daughters did before treatment. They considered this Scaphocephaly, very commom in premature births but there are pictures in our photo section of Lorenzo who had scaphy, he was not a preemie. If you can, please take a look at -Dustie and Lorenzo's pictures, there are before and after banding pictures. It is extremely difficult to reposition a scaphy headshape, but of course not impossible. I'm not sure what direction you are wanting to go with this or any direction at all, but if we can help any way, just let us know. Where are you located? Maybe somebody is in your area and can help with a specialist.Dustie, mom to , DOCGrad'03Texas> > i am new here not sure if i belong but i and another friend are in search of answers regaurding our sons a another online friend gave her the link to here and she in turn gave it to me> my name is hillary i am 31 mother to 6 gorgeous childern 5 boys 1 girl my youngest son corbyn is the one i am having concerns about he is nearly 5mos come the 16th at birth he was considering premature though by my calculations he was 37wks exactly spent a hellish week in the nicu in which i fought to get him released i have all that on my site under corbyns birth link , since birth he didnt open his left eye much at all we used to think he was glaring at us my husband and friends would joke but as he grew his head never seemed quite normal and something about him seemed a bit off i had him evauled for craino they said with out a doubt his sutures are still open but to date he looks lopsided > his left eye rarely opens as wide as his right , his face seems just a bit off and he keeps it tilted funny though he can move it i think normally not sure why he does that its very noticable when he is laying on his belly looking up how his eyes dont quite match up from the tophis ears dont seem to align to me he has a ped check tomorrow and i am worried my friend says i should definatly get that checked out she was one that noticed his eye were off even though i had never told her and her son has the same thing he is getting pyhsio for the one that gave her the link here has twins her son is in what i beleive is a doc band for the same condition anyhow that is how i got there in search of answers > i hope you dont mind me being here and not being sure he even has it as of yet but i am unsure where to start and exactly what i need to push for if his ped doesnt seem to see what i see and i guess if you could look at his pics and tell me what you think i understand your not drs just unbaised opinon might be more helpful > thanks > hillary mom to corbyn > > http://64.216.130.105/hilly/corbyns.htmFor more plagio info

[Guest guest]

I am in Blue Springs missouri. My daughter wore a STARband with wonderful results. I know there is also a DOCband facility in KC also. We saw Dr SInghal at Children's Mercy hospital. He was wonderful andvery pro band if that is what the parent wants.

Welcome to the group!

Angie and Jenna(STAR band grad 1/21/03)

Re: new

Hi Hillary and Welcome to the group!! You have a beautiful family!! Some of those pictures just cracked me up, mostly, "green pea soup" lol It sounds as if you have a wonderful sense of humor, which you would have to, with as much as you have on your plate.My daughter was also a preemie, 6wk 5days, she spent 7 days in NICU, unlike you whe had wonderful nurses caring for her and I knew everything they were doing to her. Also, the nurses in NICU encouraged me and my husband to only come twice a day and at the most (if at all possible) 3 times a day. We were always there though, except at night because I have 2 older girls that were in school. What a shame that you had to deal with nurses like this. This being said, I really couldn't tell any shape problem with Corbyn's head until I looked at the top view. It looks just like my daughters did before treatment. They considered this Scaphocephaly, very commom in premature births but there are pictures in our photo section of Lorenzo who had scaphy, he was not a preemie. If you can, please take a look at -Dustie and Lorenzo's pictures, there are before and after banding pictures. It is extremely difficult to reposition a scaphy headshape, but of course not impossible. I'm not sure what direction you are wanting to go with this or any direction at all, but if we can help any way, just let us know. Where are you located? Maybe somebody is in your area and can help with a specialist.Dustie, mom to , DOCGrad'03Texas> > i am new here not sure if i belong but i and another friend are in search of answers regaurding our sons a another online friend gave her the link to here and she in turn gave it to me> my name is hillary i am 31 mother to 6 gorgeous childern 5 boys 1 girl my youngest son corbyn is the one i am having concerns about he is nearly 5mos come the 16th at birth he was considering premature though by my calculations he was 37wks exactly spent a hellish week in the nicu in which i fought to get him released i have all that on my site under corbyns birth link , since birth he didnt open his left eye much at all we used to think he was glaring at us my husband and friends would joke but as he grew his head never seemed quite normal and something about him seemed a bit off i had him evauled for craino they said with out a doubt his sutures are still open but to date he looks lopsided > his left eye rarely opens as wide as his right , his face seems just a bit off and he keeps it tilted funny though he can move it i think normally not sure why he does that its very noticable when he is laying on his belly looking up how his eyes dont quite match up from the tophis ears dont seem to align to me he has a ped check tomorrow and i am worried my friend says i should definatly get that checked out she was one that noticed his eye were off even though i had never told her and her son has the same thing he is getting pyhsio for the one that gave her the link here has twins her son is in what i beleive is a doc band for the same condition anyhow that is how i got there in search of answers > i hope you dont mind me being here and not being sure he even has it as of yet but i am unsure where to start and exactly what i need to push for if his ped doesnt seem to see what i see and i guess if you could look at his pics and tell me what you think i understand your not drs just unbaised opinon might be more helpful > thanks > hillary mom to corbyn > > http://64.216.130.105/hilly/corbyns.htmFor more plagio info

[Guest guest]

ok i got that diagram in your all files soo someone tell me is his head suppose to be round like that babys ?

Re: new

Hi Hillary and Welcome to the group!! You have a beautiful family!! Some of those pictures just cracked me up, mostly, "green pea soup" lol It sounds as if you have a wonderful sense of humor, which you would have to, with as much as you have on your plate.My daughter was also a preemie, 6wk 5days, she spent 7 days in NICU, unlike you whe had wonderful nurses caring for her and I knew everything they were doing to her. Also, the nurses in NICU encouraged me and my husband to only come twice a day and at the most (if at all possible) 3 times a day. We were always there though, except at night because I have 2 older girls that were in school. What a shame that you had to deal with nurses like this. This being said, I really couldn't tell any shape problem with Corbyn's head until I looked at the top view. It looks just like my daughters did before treatment. They considered this Scaphocephaly, very commom in premature births but there are pictures in our photo section of Lorenzo who had scaphy, he was not a preemie. If you can, please take a look at -Dustie and Lorenzo's pictures, there are before and after banding pictures. It is extremely difficult to reposition a scaphy headshape, but of course not impossible. I'm not sure what direction you are wanting to go with this or any direction at all, but if we can help any way, just let us know. Where are you located? Maybe somebody is in your area and can help with a specialist.Dustie, mom to , DOCGrad'03Texas> > i am new here not sure if i belong but i and another friend are in search of answers regaurding our sons a another online friend gave her the link to here and she in turn gave it to me> my name is hillary i am 31 mother to 6 gorgeous childern 5 boys 1 girl my youngest son corbyn is the one i am having concerns about he is nearly 5mos come the 16th at birth he was considering premature though by my calculations he was 37wks exactly spent a hellish week in the nicu in which i fought to get him released i have all that on my site under corbyns birth link , since birth he didnt open his left eye much at all we used to think he was glaring at us my husband and friends would joke but as he grew his head never seemed quite normal and something about him seemed a bit off i had him evauled for craino they said with out a doubt his sutures are still open but to date he looks lopsided > his left eye rarely opens as wide as his right , his face seems just a bit off and he keeps it tilted funny though he can move it i think normally not sure why he does that its very noticable when he is laying on his belly looking up how his eyes dont quite match up from the tophis ears dont seem to align to me he has a ped check tomorrow and i am worried my friend says i should definatly get that checked out she was one that noticed his eye were off even though i had never told her and her son has the same thing he is getting pyhsio for the one that gave her the link here has twins her son is in what i beleive is a doc band for the same condition anyhow that is how i got there in search of answers > i hope you dont mind me being here and not being sure he even has it as of yet but i am unsure where to start and exactly what i need to push for if his ped doesnt seem to see what i see and i guess if you could look at his pics and tell me what you think i understand your not drs just unbaised opinon might be more helpful > thanks > hillary mom to corbyn > > http://64.216.130.105/hilly/corbyns.htmFor more plagio info

[Guest guest]

thanks that is great i have friends in bluesprings my husband graduated from there yahh i havent gotten to see anyone yet corbyn did see a neurosurgen and thy totally ruled out cranio but his head is still funnylooking and his left eye doesnt open as wide and his face is looking a bit more lopsided at the time no one mentions plagio as a possiblty or that maybe he had tight neck musle though he tends to keep his head tilted we have ped check up today so i will see , how long did it take for you to get in to see dr slnghal at childerns?

Re: new

Hi Hillary and Welcome to the group!! You have a beautiful family!! Some of those pictures just cracked me up, mostly, "green pea soup" lol It sounds as if you have a wonderful sense of humor, which you would have to, with as much as you have on your plate.My daughter was also a preemie, 6wk 5days, she spent 7 days in NICU, unlike you whe had wonderful nurses caring for her and I knew everything they were doing to her. Also, the nurses in NICU encouraged me and my husband to only come twice a day and at the most (if at all possible) 3 times a day. We were always there though, except at night because I have 2 older girls that were in school. What a shame that you had to deal with nurses like this. This being said, I really couldn't tell any shape problem with Corbyn's head until I looked at the top view. It looks just like my daughters did before treatment. They considered this Scaphocephaly, very commom in premature births but there are pictures in our photo section of Lorenzo who had scaphy, he was not a preemie. If you can, please take a look at -Dustie and Lorenzo's pictures, there are before and after banding pictures. It is extremely difficult to reposition a scaphy headshape, but of course not impossible. I'm not sure what direction you are wanting to go with this or any direction at all, but if we can help any way, just let us know. Where are you located? Maybe somebody is in your area and can help with a specialist.Dustie, mom to , DOCGrad'03Texas> > i am new here not sure if i belong but i and another friend are in search of answers regaurding our sons a another online friend gave her the link to here and she in turn gave it to me> my name is hillary i am 31 mother to 6 gorgeous childern 5 boys 1 girl my youngest son corbyn is the one i am having concerns about he is nearly 5mos come the 16th at birth he was considering premature though by my calculations he was 37wks exactly spent a hellish week in the nicu in which i fought to get him released i have all that on my site under corbyns birth link , since birth he didnt open his left eye much at all we used to think he was glaring at us my husband and friends would joke but as he grew his head never seemed quite normal and something about him seemed a bit off i had him evauled for craino they said with out a doubt his sutures are still open but to date he looks lopsided > his left eye rarely opens as wide as his right , his face seems just a bit off and he keeps it tilted funny though he can move it i think normally not sure why he does that its very noticable when he is laying on his belly looking up how his eyes dont quite match up from the tophis ears dont seem to align to me he has a ped check tomorrow and i am worried my friend says i should definatly get that checked out she was one that noticed his eye were off even though i had never told her and her son has the same thing he is getting pyhsio for the one that gave her the link here has twins her son is in what i beleive is a doc band for the same condition anyhow that is how i got there in search of answers > i hope you dont mind me being here and not being sure he even has it as of yet but i am unsure where to start and exactly what i need to push for if his ped doesnt seem to see what i see and i guess if you could look at his pics and tell me what you think i understand your not drs just unbaised opinon might be more helpful > thanks > hillary mom to corbyn > > http://64.216.130.105/hilly/corbyns.htmFor more plagio info

[Guest guest]

is he in plastic surgery clinic his name sounds familar i think my daughter saw him about her hemangioma as a baby but i cant be sure just his name is awfully familar

Re: new

Hi Hillary and Welcome to the group!! You have a beautiful family!! Some of those pictures just cracked me up, mostly, "green pea soup" lol It sounds as if you have a wonderful sense of humor, which you would have to, with as much as you have on your plate.My daughter was also a preemie, 6wk 5days, she spent 7 days in NICU, unlike you whe had wonderful nurses caring for her and I knew everything they were doing to her. Also, the nurses in NICU encouraged me and my husband to only come twice a day and at the most (if at all possible) 3 times a day. We were always there though, except at night because I have 2 older girls that were in school. What a shame that you had to deal with nurses like this. This being said, I really couldn't tell any shape problem with Corbyn's head until I looked at the top view. It looks just like my daughters did before treatment. They considered this Scaphocephaly, very commom in premature births but there are pictures in our photo section of Lorenzo who had scaphy, he was not a preemie. If you can, please take a look at -Dustie and Lorenzo's pictures, there are before and after banding pictures. It is extremely difficult to reposition a scaphy headshape, but of course not impossible. I'm not sure what direction you are wanting to go with this or any direction at all, but if we can help any way, just let us know. Where are you located? Maybe somebody is in your area and can help with a specialist.Dustie, mom to , DOCGrad'03Texas> > i am new here not sure if i belong but i and another friend are in search of answers regaurding our sons a another online friend gave her the link to here and she in turn gave it to me> my name is hillary i am 31 mother to 6 gorgeous childern 5 boys 1 girl my youngest son corbyn is the one i am having concerns about he is nearly 5mos come the 16th at birth he was considering premature though by my calculations he was 37wks exactly spent a hellish week in the nicu in which i fought to get him released i have all that on my site under corbyns birth link , since birth he didnt open his left eye much at all we used to think he was glaring at us my husband and friends would joke but as he grew his head never seemed quite normal and something about him seemed a bit off i had him evauled for craino they said with out a doubt his sutures are still open but to date he looks lopsided > his left eye rarely opens as wide as his right , his face seems just a bit off and he keeps it tilted funny though he can move it i think normally not sure why he does that its very noticable when he is laying on his belly looking up how his eyes dont quite match up from the tophis ears dont seem to align to me he has a ped check tomorrow and i am worried my friend says i should definatly get that checked out she was one that noticed his eye were off even though i had never told her and her son has the same thing he is getting pyhsio for the one that gave her the link here has twins her son is in what i beleive is a doc band for the same condition anyhow that is how i got there in search of answers > i hope you dont mind me being here and not being sure he even has it as of yet but i am unsure where to start and exactly what i need to push for if his ped doesnt seem to see what i see and i guess if you could look at his pics and tell me what you think i understand your not drs just unbaised opinon might be more helpful > thanks > hillary mom to corbyn > > http://64.216.130.105/hilly/corbyns.htmFor more plagio info

[Guest guest]

yes my daughter saw him years and years ago in regaurds to a hemangioma it ws gonna take too long so s he ended up seeing dr colyer which i found on the doc band site to be a useing this treatment soo i think i will start with him i know him and he is very nice and very bright and very helpful and it was a heck of a less hassle getting to be seen, 4 of my 6 kids were born in kansas at overland park regonal and our ped is on state line yes we live by the bannister mall area very close to the stateline here

Re: new> > > Hi Hillary and Welcome to the group!! You have a beautiful family!! > Some of those pictures just cracked me up, mostly, "green pea soup" > lol It sounds as if you have a wonderful sense of humor, which you > would have to, with as much as you have on your plate.> > My daughter was also a preemie, 6wk 5days, she spent 7 days in NICU, > unlike you whe had wonderful nurses caring for her and I knew > everything they were doing to her. Also, the nurses in NICU > encouraged me and my husband to only come twice a day and at the most > (if at all possible) 3 times a day. We were always there though, > except at night because I have 2 older girls that were in school. > What a shame that you had to deal with nurses like this. This being > said, I really couldn't tell any shape problem with Corbyn's head > until I looked at the top view. It looks just like my daughters did > before treatment. They considered this Scaphocephaly, very commom in > premature births but there are pictures in our photo section of > Lorenzo who had scaphy, he was not a preemie. If you can, please > take a look at -Dustie and Lorenzo's pictures, there are before > and after banding pictures. It is extremely difficult to reposition > a scaphy headshape, but of course not impossible. I'm not sure what > direction you are wanting to go with this or any direction at all, > but if we can help any way, just let us know. Where are you > located? Maybe somebody is in your area and can help with a > specialist.> > Dustie, mom to , DOCGrad'03> Texas> > > > > > i am new here not sure if i belong but i and another friend are in > search of answers regaurding our sons a another online friend gave > her the link to here and she in turn gave it to me> > my name is hillary i am 31 mother to 6 gorgeous childern 5 boys 1 > girl my youngest son corbyn is the one i am having concerns about he > is nearly 5mos come the 16th at birth he was considering premature > though by my calculations he was 37wks exactly spent a hellish week > in the nicu in which i fought to get him released i have all that on > my site under corbyns birth link , since birth he didnt open his left > eye much at all we used to think he was glaring at us my husband > and friends would joke but as he grew his head never seemed quite > normal and something about him seemed a bit off i had him evauled for > craino they said with out a doubt his sutures are still open but to > date he looks lopsided > > his left eye rarely opens as wide as his right , his face seems > just a bit off and he keeps it tilted funny though he can move it i > think normally not sure why he does that its very noticable when he > is laying on his belly looking up how his eyes dont quite match up > from the tophis ears dont seem to align to me he has a ped check > tomorrow and i am worried my friend says i should definatly get that > checked out she was one that noticed his eye were off even though i > had never told her and her son has the same thing he is getting > pyhsio for the one that gave her the link here has twins her son is > in what i beleive is a doc band for the same condition anyhow that is > how i got there in search of answers > > i hope you dont mind me being here and not being sure he even has > it as of yet but i am unsure where to start and exactly what i need > to push for if his ped doesnt seem to see what i see and i guess if > you could look at his pics and tell me what you think i understand > your not drs just unbaised opinon might be more helpful > > thanks > > hillary mom to corbyn > > > > http://64.216.130.105/hilly/corbyns.htm> > > > For more plagio info

[Guest guest]

Hi Hillary and welcome to the group!

Corbyn is such a cutie - love those cheeks!

From the pictures it looks like he may have scaphy, but you should

have him checked by a specialist to be sure. If you are near a

Cranial Tech office they can do a free evaluation. If not you may

want to see a Pediatric neurosurgeon that specializes in Plagiocephaly

(that's who we saw).

My son Jake had moderate plagio, with a flat spot on the back left

side of his head. He had a similar problem with his left eye.

Because of where the flat spot was - it caused his head to bulge over

his left ear and his forehead bulged over his left eye. This caused

his left eye to look smaller. We had him checked by an

opthamologist, because at times he looked cross eyed - but his eyes

were fine. He wore a DocBand from Cranial Tech - and as his head

shape corrected - so did his eye. It was hard to tell in the

pictures if Corbyn's head bulged over his left eye at all. But their

eyes looked so similar I had to tell you about Jake.

I hope this was helpful. Please let us know what area you're from -

maybe someone can suggest a good specialist for you. Good luck!

in NJ

mom to Jake 16mo(DocBand Grad 2003)

and Tyler 4yrs.

--- In Plagiocephaly , " Steve Barlow " <sbarlow@m...>

wrote:

>

> i am new here not sure if i belong but i and another friend are in

search of answers regaurding our sons a another online friend gave

her the link to here and she in turn gave it to me

> my name is hillary i am 31 mother to 6 gorgeous childern 5 boys 1

girl my youngest son corbyn is the one i am having concerns about he

is nearly 5mos come the 16th at birth he was considering premature

though by my calculations he was 37wks exactly spent a hellish week

in the nicu in which i fought to get him released i have all that on

my site under corbyns birth link , since birth he didnt open his left

eye much at all we used to think he was glaring at us my husband

and friends would joke but as he grew his head never seemed quite

normal and something about him seemed a bit off i had him evauled for

craino they said with out a doubt his sutures are still open but to

date he looks lopsided

> his left eye rarely opens as wide as his right , his face seems

just a bit off and he keeps it tilted funny though he can move it i

think normally not sure why he does that its very noticable when he

is laying on his belly looking up how his eyes dont quite match up

from the tophis ears dont seem to align to me he has a ped check

tomorrow and i am worried my friend says i should definatly get that

checked out she was one that noticed his eye were off even though i

had never told her and her son has the same thing he is getting

pyhsio for the one that gave her the link here has twins her son is

in what i beleive is a doc band for the same condition anyhow that is

how i got there in search of answers

> i hope you dont mind me being here and not being sure he even has

it as of yet but i am unsure where to start and exactly what i need

to push for if his ped doesnt seem to see what i see and i guess if

you could look at his pics and tell me what you think i understand

your not drs just unbaised opinon might be more helpful

> thanks

> hillary mom to corbyn

>

> http://64.216.130.105/hilly/corbyns.htm

[Guest guest]

Hi Sharon,

Minocin was my lifesaver. I have Sjogrens as well. Here is a story

I wrote.

I was diagnosed with Sjogrens Syndrome in 1982. It began with very

dry eyes that at first were light sensitive. They became so dry that

it was difficult to see without everything becoming blurry. I was

getting pain in my eyes.

At this point, I needed to use moisture chamber glasses to keep the

air from drying my eyes further and thus reducing some of the pain.

I was concerned that particles in the air would fly into my eyes and

stick to them as there was no moisture to shield them. This often was

happening. Normal daylight even bothered them, let alone sunlight.

I was becoming more and more homebound as smokers bothered me as the

ashes would stick to my eyes and my eyes just would sting instead of

water. I could no longer drive due to blurring.

Life became using artificial tears every hour, living in darkened

rooms and just not using my eyes. Watching TV for half an hour was a

luxury as well as reading. When reading, all I could read at one time

was a paragraph or two as the focus that I needed to read dried my

eyes even more causing more pain as well as the words would all blur

together.

I realized I had lost my sense of smell when my daughter who was then

12 made a tuna fish sandwich for me and I told her it must have

turned, as it smelled terrible. She insisted it wasn't but I never

knew this was a manifestation of the disease. Again not realizing

this, I opened the refrigerator one day and the same thing happened,

a foul smell occurred. I though a good portion of the food away,

washed out the refrigerator and, you guessed it, the smell was still

there! It was the lack of moisture in my nose that was causing this

Dry mouth made it impossible to eat meat, hard fruits or hard foods

in general. I did not even realize I was gravitating towards softer

foods and foods with sauces. It was just easier to swallow.

I once was eating sn apple when this began and a piece of apple did

stick in my throat and I was rushed to the ER. I knew I had to eat

softer foods from then on.

My voice grew hoarse and I suffered with laryngitis often. I was

trying at that time to make a patient education tape on Lupus When

they replayed what I had recorded a distinct click could be heard.

This came from the dryness and it did not seem to matter how much

water I consumed or gum or sugar free lozenges I used.

I learned about a clinical trial at our local University hospital for

the use of pilocarpine, now called salagen. I called the doctor and

he agreed to see me. When I met DR Sreebny he had said I was already

very severe and he wanted to be sure I received the medication so he

advised against the trial, as it was a double blind study. I became

his patient and he followed me as though I was in the trial. This was

in 1995.

I took the medication 4 x a day and I did begin to improve I no

longer needed the glasses nor the tears as frequently and I was more

comfortable.I had also had a punctal occulsion done by cautery as I

wanted it permanent.

AT a checkup in 1996, Dr Sreebny of Stony BrookU( now retired) was

doing saliva measurements, that he always did and asked me if

anything was different. It was! I had begun Minocin 3 months before

but neglected to tell him before he asked. It was prescribed for my

Lupus and rheumatoid arthritis that I have as well. On examination,

he told me that the glands seemed to be secreting more moisture now .

I never expected this!

I saw him 3 months later and again, an increase in saliva and

moisture. After 9 months on Minocin, my saliva levels were in the

normal range for the first time ever.

After 1 yr on Minocin I went for an annual eye exam. The eye doctor

asked if I was doing anything differently. I told him about the

minocin and that I had reduced the cortisone as well as the

methotrexate.He said he wanted to do a Schirmers test to check the

amount of eye moisture. I rebelled as the last time this was done 2

yrs before, the doctor and I scraped the paper off my eye as there

was NO moisture! This time was very different. I measured a normal

reading. He said that the Sjogrens is well under control.

On the minocin, I can now read novels, work on a computer, eat

anything I wish and have regained some of my lost sense of smell. I

no longer use tears or need special glasses. I am no longer limited.

I can drive, eat out not worry about things botherong my eyes. The

sunlight only bothers them when it bothers others.

Every time I returned to Dr Sreebny, he remarked about the change in

me and has said to me that from where I was when I came to him and

where I was now, it was a miracle. I feel that way, too. I had the

measurement increase to prove this and feel it was a way of my really

documenting the improvement.

I was grateful for his supervision, as I am able to know that I have

improved. I so appreciate every day for the way I feel. As an extra

bonus, my rheumatoid arthritis and lupus are also in control!

Hope this helps, Sharon...There is HOPE

Love Marge

> Hi,

> I am new to this group. I have been ill for about 1 year. I think

it

> is sjogren's syndrome. All my test keep coming up negative.

Symptoms

> are very real. I was wondering if anyone had a positive therapy

> approach.

> sharon