Introduction

June 30, 2006

Wow Lori your little girl has had a challenging history. My prayers are with

you. I think your doctors will look at everything going on in her body. as

you read here research the file section and links. There are many disorders

which may cause periodic fevers.

Her medication history is similar to drugs used at the NIH for fever

disorders. For children who have significant PFS (periodic fever syndromes)

I have seen Methotrexate and Remicade used to assist with the fevers. I have

opted not to use them with my son at this point.

These disorders will overlap. Many of the kids here were initially

mis-diagnosed with JRA and later changed to one of the PFS. I think the docs

were hasty with the other kids as they had no boney or cartilage changes.

My cousins daughter has JRA and also suffers from the uveitis issues.

Please feel free to ask questions.

Fran

Fran A Bulone

Mom to ph 7 yrs old

Waxhaw, NC

Owner & Moderator Group

<>

June 30, 2006

Hi Lori -

I just wanted to respond because we also see the rheumatologists and

infections disease doctors at Stanford - and, as it sounds like you

are, we have been very pleased. We worked a lot with Dr. Lee and

Dr. Gantz.

My daughter's situation is not similar to yours, so I don't have

much advice. My daughter had a couple of fevers around 10 months

old (some with sore in her mouth), that the doctors couldn't

explain. Then, after she turned 1 year old, she had a really bad

fever that landed her at Stanford. At that point she also had an

enlarged liver and spleen. They tested her for malignancies as well

(bone marrow and liver biopsy). The doctors thought Systemic JRA

was a strong possibility, but she never developed the arthritis.

She was on prednisone, which brought all her symptoms under

control. We weaned her off of that, and once she was completely

off, she started getting fevers again. This time they were short (1-

2days) and controlled, no other symptoms. We put her on naprosyn,

which seemed to help and possibly be why they were short and

controlled. We tested her for the genetic fever syndroms (which the

doctors at Stanford supported), and she tested postivie for one of

the FMF symptoms. We tried Colchicine, but it didn't help. We

eventually took her of all of the meds, and thankfully, since then,

my daughters fevers have pretty much " disappeared " over the last 10

months or so, so we are hoping she's over whatever she had going

on. The doctors at Stanford also helped us get into the NIH study,

which was helpful and helped put our minds at ease.

With your daughter's situation, I can't help but to wonder if its a

reaction to being on the immune suppressive medications. That her

immune system is readjusting? Are you also a member of the JRA

group? If so, you may want to try posting there and seeing if any

of the folks there have experienced anything similar after weaning

off similar medications. By the way, its great to hear that her Poly

JRA is under control!

Good luck and sorry I couldn't be more helpful. I understand how

hard it is to see your young child go through so much at an early

age. But they are troopers and stronger than we think - I know I

get my strength from my daughter.

am

(mom to Layla)

>

> Hello all,

>

> My daughter, Sammy, is 6.5 years old, and has been having periodic

fevers

> and other symptoms (mild mouth sores, enlarged tonsils,

swollen lymph

> nodes, abdominal pain, fatigue) for about five months. Initially,

the fevers

> were occurring about every two weeks, and would last about 24

hours or less.

> She'd get tired in the afternoon, start running a pretty high

fever (102-103)

> by dinner, and then be pretty much back to normal the next day.

This past

> week, the fevers lasted closer to five days, and she was really

wiped out.

> Sunday the fever left and her energy and appetite quickly ramped

up. By Monday

> she was back to going full speed all day and eating everything in

sight.

>

> She was diagnosed with the autoimmune diseases pauciarticular

juvenile

> rheumatoid arthritis (JRA) and uveitis four years ago, shortly

before her third

> birthday. Up until recently, she was on the immunosuppressive RA

drug, Humira,

> which she had been on for two years, and she was on a similar

drug,

> Remicade, for a year before that. Because these drugs increase a

patient's risk for

> lymphoma, when her rheumatologist noticed enlarged lymph nodes in

her neck in

> March, Sammy was immediately tested for malignancy (spinal tap,

bone marrow

> biopsy, lymph node biopsy) as well as many possible infectious

diseases.

> Everything came back negative, thank God, but while we are trying

to figure out

> what's behind these latest symptoms, she has been taken off all

systemic

> drugs to allow her immune system to function without suppression.

>

> Another possible data point -- she was taken off of the NSAID

Naprosyn

> around Christmas, and the DMARD Methotrexate at the end of

February, shortly

> before the fevers began. She had been on both of these drugs

pretty much

> continuously since the JRA and uveitis were diagnosed four years

ago. We were in the

> process of trying to wean her off all the medications to see if

her uveitis

> had gone into remission. Since coming off the Humira, the

uveitis has

> returned, and is being treated topically for the time being with

steroid drops.

>

> She has not yet been diagnosed with anything, but while doing my

own

> research I discovered and was struck by how well the

symptoms matched up with

> what Sammy has been experiencing. I talked to her rheumatologist

about it

> today, and while she is familiar with (she treats other kids

for it), she

> hasn't really been thinking along those lines given Sammy's other

autoimmune

> diseases and the fact that she has been immunosuppressed for so

long. We

> see infectious disease specialists next week, who also see kids

with , and

> Sammy's rheumatologist has encouraged me to discuss it with

them. One

> possibility is that we will try Cimetidine to see if it helps,

since there isn't

> really any risk to that. We will also continue testing her for

other

> autoimmune disorders.

>

> I am so glad to have found this group, as I was feeling very

frightened and

> frustrated. Sammy has been through an incredible amount in her

short life

> with the JRA, uveitis, and uveitis-related complications (cataract

and

> glaucoma). Despite all the medications and surgeries she has been

through, she is a

> very cheerful, energetic little girl, which is why it's so hard to

see her so

> uncharacteristically subdued when these fevers hit. I am trying

to remain

> hopeful that what's behind this latest challenge is indeed

that will

> respond to something relatively simple like Cimetidine,

prednisone, or

> tonsillectomy. We are fortunate to have access to top-notch

pediatric

> rheumatologists and infectious disease specialists at Stanford

University's Lucile Packard

> Children's hospital, and I'm grateful for that.

>

> Anyway, that's my LONG introduction! Thank you all for sharing

your

> experiences. It is helping me gather a lot of information that I

am preparing to

> take to our appt. next week. If any of you have experience with

in

> conjunction with autoimmune diseases like JRA, I'd really

appreciate hearing from

> you. (Sammy's rheumatologist has not had any patients with this

experience.)

>

> Wishing all our children good health,

>

> --Lori Toomey, mom to Sammy (6.5 years old, JRA, uveitis, ?)

> Cupertino, CA

>

June 30, 2006

We are currently using Methotrexate and Infliximab at the NIH for our 7yr old

son, Nino. This is after many drugs have been tried and failed. There are down

sides, many...to all of these toxic medications, but...in our situation, it is

giving him QUALITY days...Prayers are sent your way...Lori(Nino's Mom)

Fran Bulone <fbulone@...> wrote: Wow Lori your little girl

has had a challenging history. My prayers are with

you. I think your doctors will look at everything going on in her body. as

you read here research the file section and links. There are many disorders

which may cause periodic fevers.

Her medication history is similar to drugs used at the NIH for fever

disorders. For children who have significant PFS (periodic fever syndromes)

I have seen Methotrexate and Remicade used to assist with the fevers. I have

opted not to use them with my son at this point.

These disorders will overlap. Many of the kids here were initially

mis-diagnosed with JRA and later changed to one of the PFS. I think the docs

were hasty with the other kids as they had no boney or cartilage changes.

My cousins daughter has JRA and also suffers from the uveitis issues.

Please feel free to ask questions.

Fran

Fran A Bulone

Mom to ph 7 yrs old

Waxhaw, NC

Owner & Moderator Group

<>

June 30, 2006

Hi Lori!

Earlier, I responded too soon. Your story sounds similar to ours, and JRA was

suspected in the early days...PLEASE remain hopeful....there are many forms of

PFS that are being discovered each and every day. The researchers at the NIH

are fabulous at what they do. Good luck in our journey...please keep in touch!

Lori (Nino's Mom)

LoriToomey@... wrote:

Hello all,

My daughter, Sammy, is 6.5 years old, and has been having periodic fevers

and other symptoms (mild mouth sores, enlarged tonsils, swollen lymph

nodes, abdominal pain, fatigue) for about five months. Initially, the fevers

were occurring about every two weeks, and would last about 24 hours or less.

She'd get tired in the afternoon, start running a pretty high fever (102-103)

by dinner, and then be pretty much back to normal the next day. This past

week, the fevers lasted closer to five days, and she was really wiped out.

Sunday the fever left and her energy and appetite quickly ramped up. By Monday

she was back to going full speed all day and eating everything in sight.

She was diagnosed with the autoimmune diseases pauciarticular juvenile

rheumatoid arthritis (JRA) and uveitis four years ago, shortly before her third

birthday. Up until recently, she was on the immunosuppressive RA drug, Humira,

which she had been on for two years, and she was on a similar drug,

Remicade, for a year before that. Because these drugs increase a patient's risk

for

lymphoma, when her rheumatologist noticed enlarged lymph nodes in her neck in

March, Sammy was immediately tested for malignancy (spinal tap, bone marrow

biopsy, lymph node biopsy) as well as many possible infectious diseases.

Everything came back negative, thank God, but while we are trying to figure out

what's behind these latest symptoms, she has been taken off all systemic

drugs to allow her immune system to function without suppression.

Another possible data point -- she was taken off of the NSAID Naprosyn

around Christmas, and the DMARD Methotrexate at the end of February, shortly

before the fevers began. She had been on both of these drugs pretty much

continuously since the JRA and uveitis were diagnosed four years ago. We were in

the

process of trying to wean her off all the medications to see if her uveitis

had gone into remission. Since coming off the Humira, the uveitis has

returned, and is being treated topically for the time being with steroid drops.

She has not yet been diagnosed with anything, but while doing my own

research I discovered and was struck by how well the symptoms matched up

with

what Sammy has been experiencing. I talked to her rheumatologist about it

today, and while she is familiar with (she treats other kids for it), she

hasn't really been thinking along those lines given Sammy's other autoimmune

diseases and the fact that she has been immunosuppressed for so long. We

see infectious disease specialists next week, who also see kids with , and

Sammy's rheumatologist has encouraged me to discuss it with them. One

possibility is that we will try Cimetidine to see if it helps, since there isn't

really any risk to that. We will also continue testing her for other

autoimmune disorders.

I am so glad to have found this group, as I was feeling very frightened and

frustrated. Sammy has been through an incredible amount in her short life

with the JRA, uveitis, and uveitis-related complications (cataract and

glaucoma). Despite all the medications and surgeries she has been through, she

is a

very cheerful, energetic little girl, which is why it's so hard to see her so

uncharacteristically subdued when these fevers hit. I am trying to remain

hopeful that what's behind this latest challenge is indeed that will

respond to something relatively simple like Cimetidine, prednisone, or

tonsillectomy. We are fortunate to have access to top-notch pediatric

rheumatologists and infectious disease specialists at Stanford University's

Lucile Packard

Children's hospital, and I'm grateful for that.

Anyway, that's my LONG introduction! Thank you all for sharing your

experiences. It is helping me gather a lot of information that I am preparing to

take to our appt. next week. If any of you have experience with in

conjunction with autoimmune diseases like JRA, I'd really appreciate hearing

from

you. (Sammy's rheumatologist has not had any patients with this experience.)

Wishing all our children good health,

--Lori Toomey, mom to Sammy (6.5 years old, JRA, uveitis, ?)

Cupertino, CA

July 4, 2006

Hi

Your docs are testing appropriately! It usually takes up to a year for a

MORE accurate diagnosis. With symptoms that your child is having including

the relatively severe abdominal pain they need to look into disorders such

as Chron's disease.. And other unusual diseases aside from PFS's.

The genetic studies are VERY important too.

Where do you live?

If you are in the NY area, I would DEFINITELY recommend going to NIH. It

takes a while to get the appointment, but contacting Plass the

pediatric research nurse will get the ball rolling.

You will need to gather his pertinent medical records, a few showing the

elevation with CRP, and if his WBC's elevate get copies of some of those

records. Any other changes in differential should be sent along with any

Immunoglobulins and Complement studies that most likely have been done.

Some of the genetic periodic fever disorders have intense colon and

abdominal involvement. And note that a child can still have one of the PFS

that are genetic without having an actual mutation. This is why it is so

difficult sometimes to diagnose.

Also get either your Pediatrician or the Specialist to write a summary

letter to Dr. Kastner the director indicating the fever pattern and their

conclusions. Fax ALL of this to along with the paperwork she will

send you when you contact her.

plassn@...

The research group really knows the most about all the fever disorders. They

are wonderful. It takes anywhere from 3-6 months to get a return call to set

up an appointment once they have your information.

Fran A Bulone

Mom to ph 7 yrs old

Waxhaw, NC

Owner & Moderator Group

<>

July 5, 2006

Your story sounds all too familiar and distresing. I am sorry you and your

family are going through this....Dr. Brandt Groh and Dr. Barbara Ostrov are

wonderful PFS docs at hershey Medical Center, Hershey Pennsylvania. Where are

you located? Dr. Groh actually serves as the VP on The Nino Fund-PSHMC. They

are wonderful. Also, you are in great hands if you can get into the NIH-our son

Nino has undergone a colonoscopy every year for the last three years, it is a

good to find out what's going on, especially if your son is having

constipation...I know the tests get to be incredibly hard on your child and the

family, but never loose hope. So much is being learned and tested on the

PFS's....our children truly are heroes and are paving the way for other

kids.....

God Bless.

Lori Todaro

loropallo <loropallo@...> wrote:

Hello, I have an 8 year old son. He has been having these fevers for

at least a year and a half. For the first year every 4 weeks I would

be in the Doctors office. My son would be lethargic with fevers up

to 106'F. He would complain of leg pain, throat pain, headache &

constipation. He would get very whiney. Each time I was told it was

viral and sent home. Each time a strep test would be done and come

back negative.

After a full year of this I finally realized that the fever was

cyclical like a menstrual period, always showing itself in the last

week of the month or first week of the month. After doing some

research and finding this message board I raised the question to the

Practice of my son having periodic fever syndrome. They thought I

was crazy until I dropped off reports and data. They then sent me to

a pediatric Rheumatology department of a teaching hospital. For the

last 6 months I have been going through tests. At one point the

pediatrician thought he was having appendicitis. He was rushed to

the ER and after CT scan results were complete all was fine except

for some intestinal inflammation. Next he was sent for upper GI

series & Lower bowl follow through, all was fine. Now they are

recommending a colonoscopy...

How many tests do our kids need to go though before a diagnosis?

Wouldn't it be easier & quicker to just do the genetic testing to

identify the genes in question?

Can anyone tell me the blood indicators that identify Periodic Fever

Syndrome?

My son's CRP levels are high, C-Reactive and his THS levels are off.

I'm waiting for his imuniglobin levels. In the past the

pediatricians thought he had thalassemia because his hemoglobin

count was low.

Any feedback would be greatly appreciated. Is it worth it to contact

the NIH in Bethesda, MD? I don't know of any other place that is

Active in Periodic Fever Syndrome in the Tri-state area in the North

East. Can anyone recommend a good doctor in the Tri-state area that

is on the cutting edge of research on Periodic Fever Syndome?

__________________________________________________

July 5, 2006

it's me again....Fran's response clearly represents our 7 year old son. He does

have a form of PFS-STILL undiagnosed-as a result of not finding the mutation,

but not from the lack of trying. However, colitis was found and the beginning

stages of Crohn's-common in some genetic PFS....also, his response to the

treatment, methotrexate and Infliximab has pointed them(NIH)in certain areas

too. Be aggressive, and always have HOPE!

Fran Bulone <fbulone@...> wrote:

Hi

Your docs are testing appropriately! It usually takes up to a year for a

MORE accurate diagnosis. With symptoms that your child is having including

the relatively severe abdominal pain they need to look into disorders such

as Chron's disease.. And other unusual diseases aside from PFS's.

The genetic studies are VERY important too.

Where do you live?

If you are in the NY area, I would DEFINITELY recommend going to NIH. It

takes a while to get the appointment, but contacting Plass the

pediatric research nurse will get the ball rolling.

You will need to gather his pertinent medical records, a few showing the

elevation with CRP, and if his WBC's elevate get copies of some of those

records. Any other changes in differential should be sent along with any

Immunoglobulins and Complement studies that most likely have been done.

Some of the genetic periodic fever disorders have intense colon and

abdominal involvement. And note that a child can still have one of the PFS

that are genetic without having an actual mutation. This is why it is so

difficult sometimes to diagnose.

Also get either your Pediatrician or the Specialist to write a summary

letter to Dr. Kastner the director indicating the fever pattern and their

conclusions. Fax ALL of this to along with the paperwork she will

send you when you contact her.

plassn@...

The research group really knows the most about all the fever disorders. They

are wonderful. It takes anywhere from 3-6 months to get a return call to set

up an appointment once they have your information.

Fran A Bulone

Mom to ph 7 yrs old

Waxhaw, NC

Owner & Moderator Group

<>

July 25, 2006

Welcome Cat!

I am age 46, I have fibro, asthma and allergies, chronic sinusitis and a few other medical problems(nothing fatal!), I am on 22 Rx meds. My daughter age 22 has cystic fibrosis.

What is your reason for joining us, if you don't mind sharing?

love,

August 24, 2006

Welcome, , we try to be good listeners, and we understand even when we can't help. Pat K

August 24, 2006

Welcome, , we try to be good listeners, and we understand even when we can't help. Pat K

August 24, 2006

> Hi

I can tell you only from my experience that I like to have answers and for me

that comes from genetic testing. You can do the reading on teh different

periodic fever syndromes in the material Fran has collected on the site.

It gives a lot of info. I have read on this site over and over that is a

diagnosis after elimination of other disorders. Others here will post more

medical info that they have received from NIH, from their doctors, and of course

Fran is very knowledgable. Just keep reading and asking questions. My daughters

symptoms have increased so we have decided to do the genetic testing. She has

had a boatload of bloodwork drawn but our information has been that a diagnosis

needs genetic testing which is a swab and it is sent off for testing. Maybe

others have different experiences. We all are on a search for answers here I

think, even if our child has a diagnosis. It is just great we have a place to

come to.

Good luck to you!

Lori

Mom to four daughters including (2) ?PFS

> From: Keri and <wgerber@...>

> Date: 2006/08/24 Thu PM 12:43:00 EDT

>

> Subject: introduction

>

> Hello, I just joined this group and wanted to send an introduction. My

> son , who will turn 3 Sept 3, has been getting periodic fevers

> since March 2005, about 1 1/2 years ago. The fevers are usually about

> 105 for a few days, then 102 for a few days, then just another day or

> two of general tired behavior. They're not real predictable like I can

> write it on the calendar, but they're almost always between 2 and 6

> weeks apart. Only one time were they 9 weeks apart. The only other

> symptom is really swollen lymph nodes in the neck and very stiff and

> sore neck. Motrin will make the fever go away (and the soreness), but

> not until one hour after I give it, and then it wears off 2 hours before

> the time I can give it again, so that only provides relief for about 3

> hours at a time, and I can only give it 6 hours apart they tell me.

> But, during those 3 hours he's pretty much normal acting except not

> eating maybe. Sometimes his throat is a little red, but nothing very

> noticeable there.

>

> After a bunch of " it's just a virus " doctor visits I stopped going to

> the doctor and just documented it all. Then when I had a definite

> pattern I went back to our pediatrician who tested him for mono, cat

> scratch disease, etc. All that was negative and he referred us to an ID

> doctor who said she believes has . They did some blood work

> to check his immunoglobin (sp?) levels and that was ok. So she wants to

> see him during his next fever and then she mentioned trying the

> prednisone. She did not even mention genetic testing like you guys have

> been discussing, this is the first place I've seen that. Is this

> something I need to pursue? My husband is of Greek origin, I don't

> really know mine. I myself had periodic fevers all the time as a kid

> until first grade when I got my tonsils out - I literally missed half of

> kindergarten. But who knows if that was the same thing, I definitely

> agree about not jumping to surgery of course.

>

> So, that's what's going on with us now. I'm still reading through all

> of the literature you've collected, that's a great resource. I will say

> is completely healthy except for this. He never gets any colds,

> infections, stomach problems, nothing at all - even during the winter -

> except for this. And even while he has it, he's not too bad usually

> except for those first two days, but then the Motrin helps a lot.

>

> I am curious about this genetic testing though. Do you think it's ok

> for the doctor to just treat him as if he has this or should more tests

> be run? I realize the answer may be in those documents, but if you

> could just give me this shortcut I'd really appreciate it. I've got a 3

> month old (no fevers there yet!) and life is just SO busy right now with

> the new baby and the periodic fevers.

>

> Thanks,

> Keri Gerber

> Mom to , almost 3

> Austin, TX

>

August 24, 2006

Hi there! I am up in Fort Worth and my son is also 3 and has been

fevering about 15 months so I hear you on all that.

Everyone here leans toward genetic testing and I would love to do

it - if we can ever get in with ID again - just found out today that

I have to wait till 9-11-06 - so 2 more agonizing weeks till we

figure out what they want to do . . .

Read up and check out NIH in land - they are specialists in

these disorders . . .

Good luck - and if you find a great doc in Austin let me know - it's

only a three hour drive!

Hannah

Aidan - 3 years old and fevering for 15 months

Sid - 5 - healthy boy thank God . . .

>

> Hello, I just joined this group and wanted to send an

introduction. My

> son , who will turn 3 Sept 3, has been getting periodic

fevers

> since March 2005, about 1 1/2 years ago. The fevers are usually

about

> 105 for a few days, then 102 for a few days, then just another day

or

> two of general tired behavior. They're not real predictable like

I can

> write it on the calendar, but they're almost always between 2 and

6

> weeks apart. Only one time were they 9 weeks apart. The only

other

> symptom is really swollen lymph nodes in the neck and very stiff

and

> sore neck. Motrin will make the fever go away (and the soreness),

but

> not until one hour after I give it, and then it wears off 2 hours

before

> the time I can give it again, so that only provides relief for

about 3

> hours at a time, and I can only give it 6 hours apart they tell

me.

> But, during those 3 hours he's pretty much normal acting except

not

> eating maybe. Sometimes his throat is a little red, but nothing

very

> noticeable there.

>

> After a bunch of " it's just a virus " doctor visits I stopped going

to

> the doctor and just documented it all. Then when I had a definite

> pattern I went back to our pediatrician who tested him for mono,

cat

> scratch disease, etc. All that was negative and he referred us to

an ID

> doctor who said she believes has . They did some

blood work

> to check his immunoglobin (sp?) levels and that was ok. So she

wants to

> see him during his next fever and then she mentioned trying the

> prednisone. She did not even mention genetic testing like you

guys have

> been discussing, this is the first place I've seen that. Is this

> something I need to pursue? My husband is of Greek origin, I

don't

> really know mine. I myself had periodic fevers all the time as a

kid

> until first grade when I got my tonsils out - I literally missed

half of

> kindergarten. But who knows if that was the same thing, I

definitely

> agree about not jumping to surgery of course.

>

> So, that's what's going on with us now. I'm still reading through

all

> of the literature you've collected, that's a great resource. I

will say

> is completely healthy except for this. He never gets any

colds,

> infections, stomach problems, nothing at all - even during the

winter -

> except for this. And even while he has it, he's not too bad

usually

> except for those first two days, but then the Motrin helps a lot.

>

> I am curious about this genetic testing though. Do you think it's

ok

> for the doctor to just treat him as if he has this or should more

tests

> be run? I realize the answer may be in those documents, but if

you

> could just give me this shortcut I'd really appreciate it. I've

got a 3

> month old (no fevers there yet!) and life is just SO busy right

now with

> the new baby and the periodic fevers.

>

> Thanks,

> Keri Gerber

> Mom to , almost 3

> Austin, TX

>

August 25, 2006

Hi ,

I'm glad you could find a moment to yourself to find this group! There are alot

of supportive,understanding ,loving individuals here and nothing is to out of

bounds to discuss here! Please feel free to just ask questions and share! I'm a

single mom and I have a 9yr old autistic son.Limited verbally.He was dx'd at

3yrs old and dx'd with epilepsy at 4.

His aggressive and self injurous behaviors started just this past year and it

has been extremely difficult.He is on meds and I also supplement with

vitamins,his behavior has drastically improved.He would hit,scratch,pinch,bite

and be destructive .My son used to do the " toe walking " and lots of hand

flapping but once he got into early intervention those things went away.He still

may handflap now but it's when he's happy or excited about something and thats

just fine! My son's language is very sing-song since he loves barney and wiggles

but he uses scripted or chunks of language pretty appropriately but as your

daughter,he's not conversational yet.Well,I've blabbed enough..I look forward to

hearing from you!

Stacey

From: <srqmomof3@...>

Date: 2006/08/24 Thu AM 08:23:50 CDT

autism

Subject: Introduction

Hi

My name is and I the mother of 3 children. My youngest, Emma, is a

heart transplant patient and was recently diagnosed with Autism and Mental

Retardation.

Im lost in this right now, I have always known that she was developmentally

delayed (she is developmentally around 2) but for some reason these diagnosis'

are hitting me pretty hard.

Here are her symptoms:

-She is verbal, but very delayed, repeats alot, uses commands instead of

conversation

-aggression, headbanging, self injury (biting scratching self)

-hand flaps, verbal and physical ticks, ALWAYS MOVING.

Those are just a few, but right now I need to go see why she is so quiet....

thanks for listening

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August 25, 2006