Alyssa

[Guest guest]

Dear Tina 2,

I hope the move went ok??

How is alyssa doing?

I will be thinking of you of course! At least you dont have too long to wait now. That waiting is the worst part.

I have found that most dr's that work in the Childrens Hospitals are top notch! So hopefully this woman is also. Sure hope she can work out what is going on sweet on.

Love and huggles

Aisha.

[Guest guest]

*HURRAY*

*HURRAY*

*HURRAY*

*HURRAY*

*HURRAY*

Tina 2 I am so happy that you have FINALLY found a doctor who can help your daughter! Prader-Willi is a neuro disease isn't it? Here ya go babe - have some links! If you are on digest then these wont come out as links but you can get to them at http://www.elderwyn.com/medicallinks/p.html

I am really pleased for you Tina!! Keep us posted as to how both mommy and daughter are! *hug*

Love A.

Prader-Willi Syndrome

Nord - National Organisation of Rare Diseases

Prader-Willi Syndrome Arizona Association - Photos, personal stories, parenting advice, pictures, and information about PWS.

Prader-Willi Alliance of New York - Represents the interests of individuals in New York State with Prader-Willi syndrome, their families, and the professionals who provide services to the Prader-Willi population.

Prader-Willi Syndrome Association (USA) - Characteristics include hypotonia, insatiable appetite, obesity if food intake is uncontrolled, hypogonadism and incomplete sexual development, developmental delays, variable degrees of mental retardation or functional retardation, short stature (adult), small hands and feet, mild dysmorphology, and behavior problems which can be severe.

PWSA(USA) Chat Room

Syndrome and Prader-Willi Syndrome - Diagnostic assessment, selected treatment services and opportunities to participate in research from the Yale University Child Study Center.

The Children's Institute - Rehabilitation facility offering several rehabilitation programs, including special education, programs for learning disabilities and prader-willi syndrome, and special needs adoption.

Oconomowoc Developmental Center - School, residential treatment, group homes for children developmentally disabled, emotionally disturbed with mental retardation, Prader-Willi syndrome, autism, dual diagnosis, and others.

[Guest guest]

Tina...

That is soooooo cool...i hope you get your answer...knowing is half the

battle....then you can choose your weapons!!!

Sheena:)

twest5601@... wrote:

> HI EVERYONE! I AM SO SO SO HAPPY... I TOOK ALYSSA TO THE GENECTIST TODAY. I

> AM SO HAPPY I ACTUALLY FOUND A DOCTOR THAT KNOWS WHAT SHE IS TALKING ABOUT.WE

> GOT TO THE DOCTOR OFFICE TODAY. I THOUGHT TO MY SELF THIS ONE IS PROBELY

> GONNA BE AN IDIOT LIKE ALL THE OTHERS. SO WE GET IN THE ROOM AND THE NURSE

> COMES IN GETS SOME HISTORY ON ALYSSA.THEN ABOUT 20 MINUTES LATER THE DOCTOR

> COMES IN. BEFORE SHE GOES OVER THE HISTORY OF ALYSSA SHE OBSERVES ALYSSA FOR

> A WHILE THEN OUT OF THE BLUE SHE SAID HAVE YOU HEARD OF PRADER WILLI SYNDROME

> AND I PLAYED DUMB AND SAID NO. SHE SAID I HAVE A STRONG FEELING THAT IS WHAT

> ALYSSA HAS. I SAID I READ ABOUT A SYNDROME CALLED ANGELMAN SYNDROME AND SHE

> SAID NO SHE VERY HIGHLY DOUBTS THAT WHAT IT IS. SO SHE SAID DO YOU MIND IF WE

> TEST HER FOR PRADER WILLI I SAID OF COURSE NOT GO AHEAD. SHE SAID IF IT COMES

> BACK NEGITIVE THEN SHE WILL PERFORM MORE TEST BUT THEN SHE SAID IT MIGHT NOT

> BE NESSECERY TO DO OTHER TEST. SHE SAID I SHOULD HAVE THE RESAULTS IN ABOUT

> 3-4 WEEKS. I WAS SO HAPPY I STARTED CRYING. THANK YOU ALL. YOU GUYS ARE THE

> BEST.

> TINA 2

>

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[Guest guest]

what ever they gave her helped. her pink eye is all gone no more stuffy nose

no more runny nose no more coughing no more ear infection she is tearing up

the house she is normal. i am coping okay. thank you for asking.

tina2

[Guest guest]

Dear Tina 2,

Poor Alyssa... as if you didn't have enough to worry about. How is she doing today Tina? And how are you coping?

Thinking of you

Love A.

*=*=*=*=*=*=*=*=*=*=*=*=*=*=*=*=*Believe that there's a light at the end of the tunnel.Believe that you may be that light for someone else.- Kobi Yamada*=*=*=*=*=*=*=*=*=*=*=*=*=*=*=*=* Aisha ElderwynICQ 55461955aisha@...http://www.elderwyn.com/aishaMailing list: AishaElderwyn-subscribeegroupsBeing Sick:

[Guest guest]

yes it is am emg. well she has a high treshold for pain. i am wondering do

they have the child stay up or numb them or something? can a emg diagonose

alot of things. what is the difference between the conduction nreve test and

the emg? i am just wondering. well let me know what you think.

thank you

tina

[Guest guest]

Tina,

Could the test you're talking about possibly be an EMG?? If so, this

is what I know..

Unlike the nerve conduction test, which is non-invasive, the EMG is

" partially " invasive in that they do insert a little needle in the

muscle. Basically, they run a tiny electrical current through the

muscle. From what I understand, this test can be a bit painful,

especially for a small child who doesn't process pain the same way that

an adult does. For this reason, I refused this test for . He

didn't do well with the nerve conduction, even that caused him an

immense amount of pain, so I said no to the EMG.

Has Alyssa had a nerve conduction done??

Out of curiosity, both of these tests are common procedures for

diagnosing mito or other myopathies. Has this ever been mentioned to you

for Alyssa?

Take care, hon. I'm thinking of you and Alyssa often.

twest5601@... wrote:

> hi everyone!

> i had such a scare saturday. i thought alyssa was having seizers and

> of

> course she would have to freak me out on a weekend. being how she is

> so

> little and can't talk i didn't know how to tell. so the e r doctor

> ordered

> her to have an eeg monday morning to see if there was any sezier

> activity in

> the brain. they send the resullts to little rock chidren's hosppital.

> but

> they gave me the plenimary results they said that it was normal. well,

> i am

> waiting for the regular results. anyways she goes to the genetics july

> 27th

> and she set alyssa up with a pediatic nuerologist at children's

> hospital in

> little rock for aug 25th and she is recommened a meg test which is

> like a

> nerve conduction test. is that painful?i would like some info if

> possiable.

> hugs to you all sorry i am not as talkative as all of you but i feel

> for all

> of you.

> tina

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> your life, even if it's easier to let go. " - Pueblo Prayer

>

>

[Guest guest]

Hi Tina 2,

Do you need any info on EMG tests? I happen to have some links to that. My immunologist recommended you try a paediatrician neurologist. Guess that's who you are seeing next? Its good that she tested Alyssa for biochemical and metabolic analysis. This can show alot.

Sorry to hear she had no answers for you, but you will be in my thoughts and I hope all goes well with the neuro.

How are you coping with it all?

Love Aisha.

[Guest guest]

YES I COULD USE SOME INFO ON EMG TESTING. I HEARD IT IS PAINFUL OR AT LEAST

UNCOMFORTABLE BUT I ALSO HEARD IT CAN GIVE REAL GOOD DIAGONISES. IT IS VERY

FUSTRATING I MEAN SHE IS ALMOST 3 YRS OLD AND NO ONE CAN TELL ME WHAT IS

WRONG WITH HER. I AM NOT COPING AT ALL. BUT AT LEAST I HAVE MY HUSBAND AND MY

FAMILY AND YOU GUYS. SHE GOES TO THE PEDATRIC NEUROLOGIST AUG. 25TH THE BLOOD

THAT 8DR CURTIS THE GENTETICS DID SHOULD BE BACK IN ABOUT 2 WEEKS, WHAT CAN

THOSE TEST SHOW??

THANK YOU,

TINA

[Guest guest]

Hi Tina.

I'm so glad that you finally found a doctor that is doing something!!

I think you're talking about a lactate?? That's one of the tests that I

suggested you have done. A high lactate level is indicative of a

mitochondrial disease. Just a side note, tho, is that if they used a

tourniquet to draw the blood sample, it can and will make the lactate

high if it was on for more than 1 minute. A true lactate level needs to

be drawn with no tourniquet.

Mitochondrial diseases are classified as inborn errors of metabolism.

Matty's was, at least. A urine test is good for identifing exactly which

amino acids are high in Alyssa, and this can go a long way in identifing

the exact disease/ disorder. Certain amino acids are associated with

certain disorders. Many people with mito also have what are called

ragged red fibers in the muscles. Usually, the red fibers in the muscles

are smooth and flat against each other, but with RRF, they are

all...well...ragged. lol The edges of the fibers are not smooth, but

rather abnormally shaped, and do not lie against each other as they

should. I believe that the only way to positively identify ragged red

fibers is through muscle biopsy, though.

Please keep us updated, and if you have any questions, don't hesitate to

ask me. Good luck in your search.

twest5601@... wrote:

> Hi guys! i am here to report on alyssa trip to little rock. the

> neurologist

> was real smart at least i thought so. he is very knowledable. he went

> over

> her history and then the resuklts of the blood test the genetics did.

> he said

> her lactat pro something was slighlty high. so he re tested her for

> that and

> he also wanted to do a urine test called inborn error it has something

> to do

> with the body and he also did some kind, of blood drawing for

> something that

> deals with the muscles. he is gonna set her up with his associate

> Dr.Edger

> cause he is the only one that does the E M G so we will see when that

> take

> place. and i got a letter from shriners saying she has an appointment

> on Sept

> 13th to see the physican and he makes the finally descision to

> determin if

> she is fully accepted. so we are waiting for that appoinment also. but

> the

> nuerolgisrt actually did an ekg on her. i am so happy no other doctor

> would

> do an ekg. i will let you guys know when i find out.

> love you all

> tina2

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[Guest guest]

Dear Tina 2,

"Hi guys! i am here to report on alyssa trip to little rock. the neurologist was real smart at least i thought so. he is very knowledable."

HURRAY!!

"he went over her history and then the resuklts of the blood test the genetics did. he said her lactat pro something was slighlty high. so he re tested her for that and he also wanted to do a urine test called inborn error it has something to do with the body and he also did some kind, of blood drawing for something that deals with the muscles."

Did he mention lactic acid or mitochondrial disease? Sounds like that is what he suspects. I am sure can tell you too much information on mito!

"he is gonna set her up with his associate Dr.Edger cause he is the only one that does the E M G"

HURRAY a proactive doctor! sounds like you have finally fallen into the hands of people who know what they are doing! What a relief for you. Now you just have to play the waiting game, but they certinaly sound on the ball. Lets hope so hey! You coping ok Tina?

*HUGS*Love Aisha.

[Guest guest]

Hiya Tina

I am glad you have found a doc who will do the tests you want for Alyssa. Let us know when you get any results or more news. How is she doing at the mo? How are you coping?

Take care of yourself

Lots of love

Nerys

[Guest guest]

"HI GUYS! JUST GETTING READY FOR ALYSSA'S TRIP TO SHRINERS HOSPITAL."

Dearest Tina,

You and your little one will be in my thoughts! Lets hope they can find out whats going on! *hugs* Stay safe ok! Love Aisha.

[Guest guest]

twest5601@... wrote:

hi guys! well our trip to shriner's went pretty good.

i have never seen a

doctor such a physical exam how well and how much they did on her.

then the

cheif of staff came in and looked at her and they xrayed her hips and

elbows.

her hips are of course dislocated and one elbow is dislocated. they

are

having her see their genetics on 1-16-00 then she goes back 2-14-00

Did I miss

something, the dates above seem like they were 7 or 8 months ago... am

I missing something.

to see the ortho again and they are looking towards

a connective tissue disorder. i

will send you guys the nem when i find out where i put it. so i am

again hopeful but am not getting to hopeful just to be let down again.

hope everyone is doing good!

hugs to all!!

tina

my computer

has been doing STRANGE things, so if it is my computer losing its mind

again.... forgive my stupid questions.

Love

Always,

Anne

[Guest guest]

Hello Tina 2,

"hi guys! well our trip to shriner's went pretty good."

*HURRAY*

"her hips are of course dislocated and one elbow is dislocated."

You know I read of a disease on Medscape some time ago where children were born with dislocated hips. I cannot remember what it was, but I will hunt around in a moment and see if I can find it for you. If you want to look yourself the url is http://www.medscape.com and I'm sure if you went to the paediatric section and put dislocation hip in the search it would show up.

"they are having her see their genetics on 1-16-00 then she goes back 2-14-00 to see the ortho again and they are looking towards a connective tissue disorder."

oooooooh .. well any path test results you can get your hands on gimmie and I'll look into it for you hon. Certainly seems like these people actually know what they are doing.

*butterfly kisses*

Love Aisha

*=*=*=*=*=*=*=*=*=*=*=*=*=*=*=*=*Believe that there's a light at the end of the tunnel.Believe that you may be that light for someone else.- Kobi Yamada*=*=*=*=*=*=*=*=*=*=*=*=*=*=*=*=* Aisha ElderwynICQ: #55461955 MSN: Aisha <---- most reliable emergency contact.AIM: aishaelderwynIRC: DALnet # (angel`isha)email: aisha@... website: http://www.elderwyn.com/aishaBeing Sick: Mailing List: aishaelderwyn

[Guest guest]

twest5601@... wrote:

sorry i mean 1-16-01 and 2-14-01

sorry for the confusion.

Don't worry on my account.

I just figured my computer was going bonkers again... it had

been doing lots of weird stuff, so I figured it was still doing weird stuff....

I hope everything with

Alyssa turns out great!!!

Love Always,

Anne

[Guest guest]

they don't wanna do surgery till we get a diagonises so my mind is at ease.

she said kitty the other day i started crying.....that was the happpiest day

except when she took her fist steps with her walker.

tina

[Guest guest]

Hi...Tina...My daughter age 3 (on saturday coming up), Tessa has one dislocated

hip..it's very common with children with spina bifida. Children with spina

bifida even there sockets are more shallow so often when they put them

back in they may pop out again.

As for Alyssa, it may not have been noticed before ...if they are like

that...go in and out easily...Do you ever hear popping/cracking noises?

i hate it when Tessa's sound like that!Did they say that they will do surgery

anytime soon.?

Sheena;)

Aisha Elderwyn wrote:

Hello Tina 2, "hi guys! well

our trip to shriner's went pretty good." *HURRAY* "her hips are

of course dislocated and one elbow is dislocated." You know I read

of a disease on Medscape some time ago where children were born with dislocated

hips. I cannot remember what it was, but I will hunt around in a moment

and see if I can find it for you. If you want to look yourself the url

is http://www.medscape.com and I'm

sure if you went to the paediatric section and put dislocation hip in the

search it would show up. "they are having her see their genetics on

1-16-00 then she goes back 2-14-00 to see the ortho again and they are

looking towards a connective tissue disorder." oooooooh .. well any

path test results you can get your hands on gimmie and I'll look into it

for you hon. Certainly seems like these people actually know what they

are doing. *butterfly kisses*Love Aisha *=*=*=*=*=*=*=*=*=*=*=*=*=*=*=*=*

Believe that there's a light at the end of the tunnel.

Believe that you may be that light for someone else.

- Kobi Yamada

*=*=*=*=*=*=*=*=*=*=*=*=*=*=*=*=*

Aisha Elderwyn

ICQ: #55461955

MSN: Aisha <---- most reliable emergency contact.

AIM: aishaelderwyn

IRC: DALnet # (angel`isha)

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website: http://www.elderwyn.com/aisha

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“Hold on to what is good, even if it's a handful of earth. Hold

on to what you believe, even if it's a tree that stands by itself. Hold

on to what you must do even, if it's a long way from here. Hold on to your

life, even if it's easier to let go." - Pueblo Prayer

[Guest guest]

> <she said kitty the other day i started crying.....that was the happpiest day

> except when she took her fist steps with her walker>.

That's so nice....i know the feeling...when Tessa does small accomplishments

that people said wouldn't happen or we thought would never happen...we are

thrilled....Congrats!!

Sheena;)

[Guest guest]

Hi Tina,

Good news that Alyssa is trying to stand etc!! You know school might be the best place for her! Hope you get good results from all these tests! You feeling better after your big cry? Must have had a lot of tension built up from all of this.

*angel kisses*

Take care!

Love Aisha

*=*=*=*=*=*=*=*=*=*=*=*=*=*=*=*=*Believe that there's a light at the end of the tunnel.Believe that you may be that light for someone else.- Kobi Yamada*=*=*=*=*=*=*=*=*=*=*=*=*=*=*=*=* Aisha ElderwynICQ: #55461955 MSN Instant Messenger: Aisha <---- most reliable emergency contact.AIM: aishaelderwynIRC: DALnet # (angel`isha)email: aisha@... website: http://www.elderwyn.com/aishaBeing Sick: Mailing List: aishaelderwyn

[Guest guest]

Tina...how is Alyssa doing?Has she had anymore improvements with her health?

With standing? Howdoes she get around? Is she liking school?

let me know how she's doing ok!!!

Sheena:)

[Guest guest]

Chrissy,

There are several families in MO. I know of a few in Kansas City, and a few in

St. Louis. I'm sure there are more as well! You should try posting on FSMA's

guestbook (www.fsma.org) and SMA support (www.smasupport.com ) as well and you'd

be surprised at how many other families are actually there. I'm in Ky, but

that's just a phone call away! Oops... I guess I should tell you who I am first,

huh? *LOL* I'm Jeni, Mom to h who is 9 and has SMA type 2.

You can e-mail me off chat if you want to get my # or give me yours. I'm at

Mom2ArmyBratz@... anytime!

Hugs

Jeni

Chrissy Krider <smaangel@...> wrote:

My name is Chrissy. My youngest daughter, was born into this world

in March of 2003. she was a healthy litle girl. For the next year

she did all the regular things that a kid does. She crawled and

then walked. About one month after she started walking, she

stopped. I had her into doctor after doctor. and then I was

finally told she has sma in june of 2004. Since then I have become

a single parent and am now handling this on my own. If there is

anyone who could give advice i would appreciate it. I live in

rolla, MO and as far as I know there are no other sma families in my

area.

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[Guest guest]

Alyssa,

I use to shop at Secrets also

but my so called safe saline implants

put me into the plus size stores

I wish someone would have warned me

Wish I had my shape and little boobies back

Before Implants - 115 lbs

After Implants - 180 lbs

Now - 165 lbs

I remember after getting implants how the doctors

wanted to keep me doped up on all kinds of crazy meds

Please know there are many babies are sick from being breast fed

Why would you want implants after all these warnings ???

If someone would of warned me

I would of never opted for implants

Trust me they are falsely advertised

Wish I would have ran out the door

Run Alyssa Run !!

Sandy~

Alyssa,I'd do anything to go back in time and be where you are now. I chose to go through with implant surgery and it was the biggest nightmare of my life. I felt that same obsession, like once the idea was in my head, I didn't want to let go of it. I even heard a voice a few nights before I had the surgery, saying "don't do it, you'll get sick". The day before the surgery I was very upset and wanted to cancel, but I was thinking of what the doctor would think, and of what my husband would think, instead of listening to my gut. I looked at 's Secret catalogs and said soon that would be me. Well, the perception of having a bigger chest was nothing like actually having one, and I hated them. Suddenly all the women with big breasts looked dumpy to me, and the women with small breasts looked fantastic, and I really missed having what God gave me.

I became very ill from the implants, but no one was listening - including my husband - and it nearly broke up my marriage. One thing that made me angry was that I allowed someone to mess with my health, and I realized that nothing was more important than my health and I had trusted it to someone who was just trying to make money off of me. Once I got sick, my buddy the plastic surgeon wasn't there to help me, he just said "it's not the implants". I'm sure he's said this to hundreds of women before - in fact there was someone else in his office that same day with the same symptoms, who was begging the doctor to remove them, just like I was. One thing you have to consider when you get implants is that they will continue to cost you money - even if you don't get sick, you'll need more surgeries, and it's not cheap. If you do get sick, you could lose your job because you're too sick to work. I had my implants removed six months after having them put in, and all together it cost me about $14,000 (having them removed cost more than having them put in). My health has improved since I had them removed, but I can't say that I'm exactly like I was before I got implants.Love yourself as you are - that's where the road to happiness lies. Sis