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HI !

My name is Kristy and I have a 15 yr. old with mds. We

live in the United States. I would like to welcome you

and your mum and dad to our family. I hope that we can

help you learn a lot about mds. Please tell your mum

to write often and let us know all about you and your

family.

Kristy Colvin

President IMDSA

--- christopher1994uk

wrote:

> Hi I am a boy with MDS aged 7.

> I like to make friends with other children like me.

> My Mum helps me with the computer she is Pat Porter.

> She likes to make friends with other Mummys of MDs

> children.

> I like swimmimg and have lots of certificates.

> My birthday is soon and I will have a swimming party

> with my friends

> from my new school and chips after and then cake

> with candles.

> I have a baby brother called and my Daddy is

> Porter.

> You can write to me on your computer if you like,

> love from .

>

>

>

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Guest guest

Hello Christtopher, my name is Davina and i have 3 children. Kyron 9, Kyrell

6 MDS,and Kierra 4. We live in land. That was a nice post you wrote. My

whole family loves swimming also. That is wondrful, about your certificates.

You must be a great swimmer! I bet you swim better than me. I bet you are

going to have a great time at your party. Eat plenty of cake for me. I love

cake! Say hello to your mom for me and i hope to hear from you both.

Davina

>

>Reply-To: MosaicDS

>To: MosaicDS

>Subject: new member

>Date: Fri, 26 Apr 2002 10:03:10 -0000

>

>Hi I am a boy with MDS aged 7.

>I like to make friends with other children like me.

>My Mum helps me with the computer she is Pat Porter.

>She likes to make friends with other Mummys of MDs children.

>I like swimmimg and have lots of certificates.

>My birthday is soon and I will have a swimming party with my friends

>from my new school and chips after and then cake with candles.

>I have a baby brother called and my Daddy is Porter.

>You can write to me on your computer if you like,

>love from .

>

_________________________________________________________________

Join the world’s largest e-mail service with MSN Hotmail.

http://www.hotmail.com

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Hi !

We welcome you and your family to our group. I have a 6 year old who is MDS.

He is in kindergarten. We live in Fort Worth, Texas. He takes swimming

lessons every year, but he still has to be carefully watched in the pool. We

have a big pool in our back yard. He loves to swim, but his favorite sport

is basketball. He has a big brother named Corey who is 11. Where is your

party going to be? It is still too cold to swim, atleast for these Texans.

Have a great party!

Sandy Partridge, mom to ,MDS, age 6, and Corey age 11

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Hi .

I have a son named who we call Matt. He is 7 and has MDS. He is

in the first grade and lives in land. He has an older brother who is 9

named !! I think it is funny that you guys have the same

name! Are you getting ready to turn 8? Where do you live? I hope you

have a wonderful birthday and we are looking forward to hearing more about you.

Sharon (mother of Matt 7, MDS and 9)

>I have a baby brother called

>love from .

>

>

>

>Won't you please consider adding your personal story on the MDS website

>today? http://www.mosaicdownsyndrome.com

>*************************************************

>MDS MESSAGE BOARD - http://www.mosaicdownsyndrome.com/discus

>*************************************************

>

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Hi and Happy Almost Birthday, I am the mom to 15 mds and 13 ds and Tommy 10. This is a great group so you and your mom should make many friends. God Bless, Sharon Wilt from Pa

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Dear and family, WELCOME TO OUR GROUP!!!!! Our son is

7 and his name is Jakob. He is in the first grade and loves school.

He just finished 8 months of swimming lessons and he loves to swim

also. Right now he is playing tee-ball with our area little league.

We live in the USA in Pennsylvania. We will look forward to

hearing more about you and please feel free to e-mail us anytime.

Take care! (Mom to Jakob, 7)

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Hiya Chrisopher,

Big welcome to the group,

I have a daughter age 9 mds we live in blackpool UK, Where do you live?

loves pop music,outdoors ,football, well most boy games !!!, Playing

play station games and computers,

Feel free to email her

green@...

Best wishes

Judy ( IMDSA Uk contact and convention chairperson)

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Dear ,

We have a 7 year old boy with MDS and his name is (and he has a

brother named !). He's better on the computer than we

are. When he gets home from school today I'll show him your letter

because I know he'll want to say hi. Dad,

and Mom, Sharon

new member

Hi I am a boy with MDS aged 7.

I like to make friends with other children like me.

My Mum helps me with the computer she is Pat Porter.

She likes to make friends with other Mummys of MDs children.

I like swimmimg and have lots of certificates.

My birthday is soon and I will have a swimming party with my friends

from my new school and chips after and then cake with candles.

I have a baby brother called and my Daddy is Porter.

You can write to me on your computer if you like,

love from .

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Dear , I am Barb Martz from Western Pennsylvania, USA. My husband Bob and I have a son Jonas who is 1 1/2 years old and has MDS with 30% effected cells. We are not at the education junction you are at with Ariel yet, but we have another son, , who is very gifted and we have to do the IEP's for him each year and it is the greatest stress of my life. He reads at a 7th grade or above level now, and he is only in the first grade and just turned 7 very recently. I think everyone in this group has felt lost and caught in the middle with our children at one time or another. I think you are in the perfect place with this wonderful and caring group of folks! I welcome you with great joy and look forward to hearing more about you and Ariel! We have had so many new members lately that it is remarkable! Everyone here is ready to help you in all ways possible. Have you checked out the new photo site the Phipps family has created for our children? It is wonderful! You can find it by going to www.photoisland.com . You have to use the login name of vktphipps and the password mds. You will find photos of so many of the children of the folks in this group and a family site has recently been added for other photos of our kids with siblings and their families. It is worth taking a peek at. Once you get into the site you have to click on the kids first icon on the left to get the pictures to come up. I am going to check out Ariel's story tonight. Jonas' story is there too under the surname Martz. He came into this world under a very unusual set of circumstances and we just see him as an incredible miracle! Tonight I met a friend in the grocery store who has a child who was born the day after Jonas was who has full Down's Syndrome. She was marveling at how well Jonas was doing. He stood on his own for her, and she got tears in her eyes. I asked her how was doing and she said they are still trying to get him to crawl, but because he has learned to roll and twist himself to get to anything he wants, he is not motivated to try to crawl yet. I felt like she was happy for me and for Jonas, but rather overwhelmed by all she is dealing with. has many health problems that she is dealing with also. I felt the gap there that you were talking about. I want to encourage her so much, but I don't want to make too big of a deal over what Jonas can do because I feel like it makes her sad. Well, here, I am free to brag about Jonas' every accomplishment and I can be me. You will feel that too! Once again, WELCOME to you and to Ariel! Oh by the way, if you wish to post Ariel's photo on the site I mentioned, just E-mail a Phipps at xkristinax@... and she will let you know how to get a photo to her. Many Blessings to You Both, Barb Martz Mom to Jonas 18 mo (MDS) & 7 New member Hi my name is Hyers and my daughter Ariel has MDS. (See MDSwebsite for full story) Ariel is now 8 years old and doing fairlywell in school. I was wondering if any parents felt kind of lost andin the middle some times with their children. We used to socializewith some full DS families and as the years went by I felt theywerent as accepting of us because Ariel was doing so well and didnthave full DS. My friends with children dont understand all myconcerns. They are worried their child wont make honor roll and I'mworried that they wont have approproate placement for her thefollowing year. Hence my feeling in the middle.I am a single parentand although her father is very involved in her life its not a day today thing for him. I would greatly appreciate any advice. Thank you- and Ariel Hyers

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Guest guest

Hello ...

My name is Angel, and my MDS child is , who is 9 years old. I also have Tyler who is 10, who is 7, Jaeda is 6 on Monday!

I've been with this group for quite a while now, (internet time flies too fast for me to keep track!) and I think almost all of us have voiced your exact feelings... that this group was SO needed because we often didn't feel we fit in anywhere else. The parents of children with full DS, who really don't understand what a mosaicism or translocation is, so they feel our children don't have the same 'condition' their children do. (Can't tell you how often I've gone thru this: "My child has Mosaic Down Syndrome.", "oooh.... well *my* child has Trisomy 21".... :::thinking::: um, yeah.. I know, I just said my kid does too.... ) I stopped going to the Down Syndrome Support groups when was probably 4 or so. And then on the other hand... they don't necessarily fit in with the majority of kids at school etc, depending on their abilities or disabilities. So I completely understand the feeling!

Welcome to the group!!

Angel

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Dear and Ariel, WELCOME TO OUR GROUP!!!!! You will

definitely find a lot of help here. We all have very similar

problems and support each other through most everything. We live in

Pennsylvania and our son Jakob is 7 and in the first grade. He is

mainstreamed with additional learning support, speech therapy and

occupational therapy. And I personally know what you mean about how

our kids fit in. Jakob also has ADHD and a form of autism

called " aspergers syndrome " . He does not relate to other children

like other " normal " children do. Sometimes I think he is living in

his own world, and he actually does better with adults. But he does

very well in school and loves being there. His reading skills are

better than any student his learning support teacher has had. We

have not made it known to too many people about Jakob, mostly because

we didn't want him labeled, and his doctor suggested we don't for the

same reason. But I do think there are a lot of people who wonder

about him. My husband (Dave) always says we will tell people on

a " need to know " basis. I'm not sure if we are handling it

correctly, but I guess time will tell. And since I didn't

already tell you, my name is and please feel free to e-mail me

anytime. Take care and again welcome to both of you!!! (Mom to

Jakob, 7)

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Welcome, Mia!

Fenati

Italy

New member

> Hello everybody on the list,

>

> My name is Mia Ruthman Edström and I joined this list a few days ago. I

> translate medical texts from English, Danish and Norwegian to Swedish,

and

> have been doing so for the last ten years on a full time basis.

Basically,

> my profession is physiotherapist. I hope to be able to share useful

> information with you all!

>

> Mia Ruthman Edström

>

>

>

>

> URL: http://groups.yahoo.com/group/medical_translation

>

> In case of any problem with this list, you can reach the moderator at

cgtradmed@..., or at cgtradmed@....

> The FAQs of our list are available at :

http://groups.yahoo.com/group/medical_translation/files/M_T-FAQS.doc

> The NEW FREE " Medical Translators Database " (MTDB, the most reliable

assistant to find the ideal Medical Translator, is available at

http://cgtradmed-com.ifrance.com/cgtradmed-com/MedicalTranslators.htm.

>

> To unsubscribe, please send an *empty* message to

> medical_translation-UNSUBSCRIBE

>

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Guest guest

Hi and welcome Tonya! I'm Cherie. Sorry to hear about your

husband. I have cirrhosis and am very grateful to be a part of this

group. They are very knowledgeable and I am constantly learning

something new. My liver disease took me by surprise last September.

Started vomiting blood, had endoscopy to treat bleeding esophageal

varices, liver biopsy=cirrhosis. I'm married, have 2 daughters, and

will be turning 47 August 17th. My liver specialist is very

optimistic towards me. Well, this is so unlike me. ....breaking out

of my shell. (Don't keep it in, it'll make you sick.) Again,

welcome and come back often and post, and let us know how you're

doing and there's always someone who will offer you support and

comfort. Peace....cherie

-- In livercirrhosissupport , " Tonya " <tonyaw13@y...>

wrote:

> Hello!

>

> My name is Tonya and I am a new member to this group. My husband,

36,

> is in the beginning stages of liver failure. I am so new to this,

> that I am sure my " terms " or language is not exact...please forgive

me.

>

> Almost 3 years ago, doctors discovered my husband had an alpha-1

> antitrypsin deficiency. They did a liver biopsy & diagnosed him

with

> cirrhossis. We were told he would need a liver transplant down the

> road--possibly in 7-10 years. Well, like I said it is going on 3

> (January).

>

> His condition is worsening, so we found a transplant center and a

> fabulous doctor. He is now on a transplant list and we are

> left " waiting " . Meanwhile, he is losing weight rapidly, and his

> strength is decreasing. I think the doctors have finally found the

> correct dosage of water pills (his abdomen is full of fluid and

> distended), so that his weight has leveled. He has lost 36 pounds

in

> 5 weeks.

>

> As you would expect, I have tons of questions. Could anyone help?

> Aagain, please forgive my " newness " and awkward phrasing.

>

> 1. He needs to put on weight. Doctors said he has NO food

> restrictions. Is there anything he should stay away from?

>

> 2. His MELD score is low--a 9--How quickly does that number

change?

> Can we expect to stay at a 9 for awhile?

>

> 3. What other symptoms can we expect? He has the beginnings of

> varices in the esophogus (sp?), and has the fluid

retention...weight

> loss, and fatigue.

>

> I guess I will start there.

>

> Thanks for any wisdom and info you all can give,

> Tonya

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Guest guest

Hi Cherie,

Thank you for your welcome! Sorry to hear about your condition. I

am learning a lot, too!

My birthday is 4 days before yours--on the 13th! Happy (early)

Birthday to you...my husband & I take off for vacation early next

week, so I won't be around to wish you well then! Have an enjoyable

day!

I'm sure I'll be posting a lot. This is very new for us. We are

newly married (2 years on August 10th) and have been trying to start

a family--then all this came about. Eeek. Talk about challenges!

Best of luck to you--We'll chat again soon, I'm sure!

Tonya

> > Hello!

> >

> > My name is Tonya and I am a new member to this group. My

husband,

> 36,

> > is in the beginning stages of liver failure. I am so new to

this,

> > that I am sure my " terms " or language is not exact...please

forgive

> me.

> >

> > Almost 3 years ago, doctors discovered my husband had an alpha-1

> > antitrypsin deficiency. They did a liver biopsy & diagnosed him

> with

> > cirrhossis. We were told he would need a liver transplant down

the

> > road--possibly in 7-10 years. Well, like I said it is going on

3

> > (January).

> >

> > His condition is worsening, so we found a transplant center and

a

> > fabulous doctor. He is now on a transplant list and we are

> > left " waiting " . Meanwhile, he is losing weight rapidly, and his

> > strength is decreasing. I think the doctors have finally found

the

> > correct dosage of water pills (his abdomen is full of fluid and

> > distended), so that his weight has leveled. He has lost 36

pounds

> in

> > 5 weeks.

> >

> > As you would expect, I have tons of questions. Could anyone

help?

> > Aagain, please forgive my " newness " and awkward phrasing.

> >

> > 1. He needs to put on weight. Doctors said he has NO food

> > restrictions. Is there anything he should stay away from?

> >

> > 2. His MELD score is low--a 9--How quickly does that number

> change?

> > Can we expect to stay at a 9 for awhile?

> >

> > 3. What other symptoms can we expect? He has the beginnings of

> > varices in the esophogus (sp?), and has the fluid

> retention...weight

> > loss, and fatigue.

> >

> > I guess I will start there.

> >

> > Thanks for any wisdom and info you all can give,

> > Tonya

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Guest guest

Alice wrote,

His doctor said that he has end stage liver disease. I have been

reading as much as I can, and all that I can. I don't understand so

much but I am trying.

Alice, I remember the first time I heard the term " end stage liver

disease " . I thought that meant, the " end " is near. I think that in not

necessarily what it means, but maybe others will give their

understanding of the term.

Dorothy

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You can always ask for a second opinion. My wife was almost at renal failure

before her doctor put her on the transpant list. (which I believe he knew was

too late) I talked to the head of the department and he said she should have

been on a transplant list at least a year prior. My wife had been seeing this

doctor for two years! It's was very upseting. All I can say is be an advocate

for his care! Get the answers you are comfortable with. And, read up on the

disease! Question the doctors. It sounds like he needs a biopsy.

MaC

swatsel_01 wrote: Hi All,

First let me thank you for having this support group and second for

allowing me to join. My 45 year old husband was diagnosed with

cryptogenic cirrhosis on March 2nd,06. He thought he had the flu or

food poisioning because he was bloated. He went to his pcp who told

him he was bleeding internally and sent him on to the

gastroentologist the next day. The gasto doc said that he thought he

may have liver disease and said he was going to do a scope. Later

that day the dr. did the scope and called me in before my husband

woke up and told me that our food poisioning was cirrhosis and that

my husband had ascites and esophogeal varices (I had no idea what

either one of these were. He went on to say that he probably would

die if he did not get a liver right away. Needless to say that was

the worse 30 seconds of my life. The bleeding stopped and so they

waited a week and did the banding surgery and put him on a beta

blocker and 2 diuretics and a diet of less than 2,000 mg of sodium

per day. They ran a few blood tests and did an abdominal ultrasound

and an mri of his pancreas. From just these few tests they said he

has cirrhosis and they have no idea why. He has psorasis and the dr.

thinks it may be an auto immune problem,but the test for it was

negative. I asked the dr. what kind of diet other than the low

sodium he needed to be on and he said no other restrictions. In the

meantime I asked him how bad my husbands liver is because the dr.

went from " your husband needs a liver right away! " to he may die

tomorrow or he may live 10-15 years, come back in 6 months. So I

asked him to give me his child pugh rating. He said he is a 2.

Still confused...how can you be only a 2 and not eligible to be put

on the transplant list, but still have ascites and the varices? Can

someone tell me if this all sounds pretty typical or do we need a new

doctor?

I'm sorry this was so long,but it felt good to let it out and again I

appreciate the opportunity to do so. My heart goes out to all of you.

__________________________________________________

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" swatsel_01 "

Be aware that the majority of Liver failure patients in the US die

since there is a huge shortage of cadaver livers for transplant.

See www.unos.org Where ever you are in the US its the same shortage.

Therefor to survive you may need to look for a foreign transplant

since they have legal living donors where its legal to be paid. That

eliminates the shortage.

See Liver4you.org Noel

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Hi, Dorothy,

Not sure why, but only the last two messages on this made it to my mail box. I

agree heartily. I think you should say " no " to this applicant; I suspect he is

simply soliciting business...and, perhaps, a slimy business at that. You are

probably well aware that organ transplants go under very different rules in

Asian countries than they do in Western ones and, for a variety of reasons, are

more available to Westerners with money than to anyone else.

But, as some of our members will tell you, an organ transplant is not a simple

operation. It's not as if you have it done and then go home and never worry

about it again. It would seem to me that a significant problem is simply in

follow up care. If I live in the US and have a transplant in the Philippines,

are you really going back there for check ups every couple of weeks?

Hope you and are doing well. You can always write me at

dhtaylor4@...

Take care, Dennis

Re: NEW MEMBER

Thanks, all, for your input. You confirmed my own opinion.

Dorothy

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Guest guest

I spoke to soon. Found the link I wanted.

Hi,

I am new to the group also.

I have cirrhosis ( and will one day get the spelling of that down),

along with multiple other things that stem from that or came before.

I started looking through the archives and thought I saw where

someone

posted a link that would give explanations of liver enzymes and

there

functions and help to understand the enzyme tests. Does anyone have

a

link on that site handy?

I've not found any doctors willing to go in detail on lot of my

bloodwork.

Thank you for your help and being here.

Crislip

Kentucky

--- End forwarded message ---

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Guest guest

Welcome. You come to the right place if your looking for support and

information. There are a lot of wonderful people who like to help. Hopefully

it's in it's very early stages and you will respond to antiviral treatment. Many

people do. Some people live there whole lives with disease without it progessing

to cirrhosis. So stay positive. Can I ask how you found out and what your doctor

has planned?

MaC

ixchel_lot wrote: Hi,

my name is Lot, I just found out Im suffering with hepatitis B. Please

advice on this situation. Im just 22, starting my life, and now, I do

not know if people will accept me, or if I will have a job and lead a

normal life. thanks and God bless.

Lot

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

Get your email and more, right on the new Yahoo.com

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Hi, thanks everyone for the support. Right now, Im still adjusting,

and hoping that my body will eventually learn how to create anti-

bodies. I just found out about it last week. There was a vaccination

program in my office, so I took the initiative of being tested. I want

to be vaccinated, but then I found out that Im already infected. I

went to another doctor, but then the result is still positive. She

checked my liver condition, but said that the same is still in a

normal condition. Im still going to need to take another test, this

time if the result is favorable, I will be given a fit to work

certificate. Since this week, I have a lot of deadlines, I can only

accomodate this next week. She said that as of the moment, I do not

need any medication.

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Hi and welcome. Many things can cause problems with the liver and it sounds that

you are early in the diagnosis. Did you go to the ER? I'm interested how they

confirmed cirrhosis looking for gallstones. Unless the did and ultrasound and

found the liver nodular or shrunken the diagnosis usually comes from many tests

and probably a biopsy. What other symptoms do you have besides the abdominal

pain? Any yellowing of the skin or eyes?

But first, relax...take a deep breath. There are many people here who give great

advice and information. You are among friends and you will learn a lot. What

kind of doctor did you see?

MaC

Donna Lauritzen wrote:

Hello,

My name is Donna, I'm 40 years old, from Chicago, IL. I was JUST (as in a

couple of days

ago) diagnosed with cirrhosis. I'd gone to the hospital for severe abdominal

pains, and

while they were looking for gall stones, they found the cirrhosis. So, they

kept me in the

hospital to run tests.

I don't know yet exactly what caused the cirrhosis: I never was more than an

" occasional "

drinker (that was during college, and as an adult, I'm a " rare " drinker), I've

never had a

blood transfusion, and I have never had any symptoms of liver disease. I'm

hoping that

the tests will give me some answer.

My head is still spinning with this diagnosis. I want to learn as much as I

can about liver

disease, it's causes, treatments, etc. Being a long-term planner, I also want

to learn as

much as I can about liver transplant. I also know that I'm going to need a

lot of support

as I learn to live with this.

I'm looking forward to getting to know everyone on this group.

Thanks for reading!

Donna

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

We have the perfect Group for you. Check out the handy changes to Yahoo! Groups.

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Guest guest

Thanks Bobby...

I was on Ribavarin along with the shots.. Im sure some of you went

through this treatment. I also have MS which is stable at this time.

Im a bad pt because I dont do what my Dr's would like to see me do

which is take meds. I try for as long as I can with the basics or

natural if I can

Annie

>

> Hi Annie. My name is Bobby. I live in denver. Welcome to the group!

There are some VERY compationate and caring folks in this group, and

> I've felt a great sense of relief to read all the posts and the

information is awsome. I've learned a lot of valuable information

about this disease.

> I am also curiose about what treatments you were undergoing. I'm

taking an acid reducer, plus lactulose, and a new drug,( rifaximin )

for encephalopathy.

> I was having some doctor problems, but they seem to be resolving.

Anyway, have a good day.

>

> NEW Member

>

>

>

>

>

>

>

>

>

>

>

>

>

> Hi Im Annie

>

> I have had liver cirrhosis for 12 yrs now.. I tried treatment for a

few

>

> months but couldnt handle the side effects so now I am taking milk

>

> thistle to atleast help regenerate new liver cells...

>

> Hope to learn and meet more people going through this

>

> Thanks!

>

> Annie

>

>

>

>

>

>

>

>

>

>

>

>

>

>

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>

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Guest guest

Hello all, My name is Carolyn and my ds Colton is 10 yrs old and

diagnosed with PDD,nos & SPD. I have recently been advised to have

him checked for yeast overgrowth and heavy metals. His symptoms are:

Always eating

craves white foods

trouble with bm

Upper respiratory/mucus

Lots of colds

Ear Infections

lack of concentration

trouble sleeping

coordination difficulties

confused speech

hyperactivity

Sensativity to some foods

aggitation

aggression

Colton was a premie and on antibiotics for almost all of the first

two years of life. The P-doc did not perscribe any probiotics. I

had him checked for allergies but they told me he had none. It is

reported that he has low iron. He is not medicated and received OT

and speech therapy.

I am a single mom and we live in Florida. I look forward to learning

just how I can help him cope better with his difficulties.

Carolyn

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