MHE

Tom,
Now that's how a man's mind works!!!!!
LMAO
Bobbi

YAY!! William what a great pic. I'm so proud of you guy! And is that your
mommy in the pic with you?
Velma
Mom to Johnna 14, Chelsea 10, KK 6 {Prader-Willi Syndrome, Asthma and
Amblyopia} and Zoey 2

You may remember a few weeks ago me telling you all that Little William was
chosen Student of the Month, Well we just got some of the pictures back today
and wanted to share them with you. OK before I do, remember the picture is
of William not the old lady next to him.
Faith/Mom2-6

Debbie,
We have been dealing with the exact same thing with Ben.. he is still VERY
slow to eat even with the haberman he will only take maybe 2 oz by mouth,
the rest is tubed. I have tried skipping feedings and that doesn't work
because then he is weak from not having food. How many oz. does she get a
day?
I have decided that I am not going to make myself crazy over it. As long as
he is getting the nutrition and I am getting some of each feeding by mouth,
then I am not going to worry about it. The feeding is one thing that will
correct itself.. overcorrect would be a better term! I know this from
experience.. I made myself a crazy woman trying to feed David, I have
decided we have bigger battles to fight with therapy and health issues that
getting rid of his g-tube a few months early isn't going to make a huge
difference.. what matters is that he gets proper nutrition.
Ben gets 4 6oz bottles a day, 2 supplemented with a high protein powder, and
liquid calcium and a multi vitamin. Plus 1 feeding of cereal and 2 tsp.. of
fruit.
hope this helps, Vicki

In a message dated 1/27/2000 3:11:21 PM Eastern Standard Time,
Multiple01@... writes:
<<
<<

http://www.angelfire.com/vt/ConquerorPat3/index20.html
Velma
Mom to Johnna 14, Chelsea 10, KK 6 {Prader-Willi Syndrome, Asthma and
Amblyopia} and Zoey 2

<A HREF="http://www.angelfire.com/sys/popup_source.shtml?Category="
here: WHEN YOU'RE DOWN AND OUT - A Patrick's Universe Presentation</A
Velma
Mom to Johnna 14, Chelsea 10, KK 6 {Prader-Willi Syndrome, Asthma and
Amblyopia} and Zoey 2

LOL Jeanie,
Welllllll.....I kind of remember hearing something about it ... BUT I think I
came to the list after that happened ...or maybe I kept my mouth shut because I
didn't want to be pelted by rotten tomatoes over tofu!! Obviously it's not a
winner with the majority 8~o I'll pass on those tofu donuts though (gag),
thanks anyway!! ....and HEY, Ang asked!!!!!!
Nancy - Mom to Ryan 17 and Kelly 15 (pws)

nancy,
are you wanting to make tofu doughnuts????LOL dont you remember what some
people went thru last time they tried to serve tofu to their familys??...lol
some were almost disowned.....lol hey i'll bring tofu doughnuts to the
conf....anyone want one????LMAO
proud to be dannys mom,
jeanie

From: "MacBurch" <macburch@...
Angela,
I'm sending you a bunch of tofu dip recipes from the "Veggies Unite!" website.
They are exactly what you're looking for. It's a site worth looking into
when you have some extra time. ;~D Here's the address: www.vegweb.com
Nancy - Mom to Ryan 17 and Kelly 15 (pws)
For more information on Prader-Willi Syndrome you can go to the web page of
the Prader-Willi Syndrome Association - USA at http://www.pwsausa.org.
To subscribe to the Newsletter go to www.onelist.com and subscribe to
Prader-WilliNews@onelist.com
If you are interested in holistic healing go to www.onelist.com and subscribe
to PWSHolistic@onelist.com
For poems, jokes and inspirational stories try PWSInspirational@onelist.com

Hi All-
Just came home from the feeding team meeting. We don't know what is going on
with Lauren now-she was progressing and taking up to 3 ounces at a feed.
Just this week, she has totally lost interest. Not upset or unhappy-just
plain not interested. I'm really beginning to wonder if she has hunger at
all. When we introduced feeding, she did quite well, but it more of a
novelty.
Also, the feeding first thing in the morning after 8 hours sleep has always
been the one she is least interested in-she should really be wanting food
then I would think.
They want me to reduce the amount of milk I'm giving her a little bit and see
if that makes a difference. She is a little round all of a sudden-she may
just not be needing the same number of calories that another baby needs due
to the low tone.
Of course we all talk about how in a couple of years we will look back and
laugh that feeding her was ever a problem!
Would welcome any thoughts or suggestions. Anyone else been here?
Debbie
Lauren's Mom

Thoughts for women
Reason to smile: Every 7 minutes of every day,
someone in an aerobic class pulls a hamstring.
One of life's mysteries is how a 2 pound box
of candy can make a woman gain 5 lbs.
My mind not only wanders,
it sometimes leaves completely.
The best way to forget all your troubles
is to wear tight shoes.
The nice part about living in a small town
is that when you don't know what you're doing,
someone else does.
The older you get,
the tougher it is to lose weight
because by then, your body and your fat
are really good friends.
Just when I was getting used
to yesterday, along came today.
Sometimes I think I understand everything,
then I regain consciousness.
I gave up jogging for my health
when my thighs kept rubbing together
and setting my pantyhose on fire.
Skinny people irritate me!
Especially when they say things like,
"You know sometimes I just forget to eat."
Now I've forgotten my address,
my mother's maiden name, and my keys.
But I've never forgotten to eat.
You have to be a special kind
of stupid to forget to eat.
A friend of mine confused her valium with her birth control pills. She had 14
kids, but she doesn't really care.
They keep telling us to get in touch with our bodies.
Mine isn't all that communicative
but I heard from it the other day after I said,
"Body, how'd you like to go to the six o'clock
class in vigorous toning?" Clear as a bell my body said,
"Listen witch... do it and die."
The trouble with some women is that they get all excited about nothing (and
then they marry him..)
I read this article that said the typical symptoms
of stress are eating too much,
impulse buying, and driving too fast.
Are they kidding?
That is my idea of a perfect day.
I know what Victoria's Secret is.
The secret is that nobody older than 30 can fit into their stuff.
If men can run the world,
why can't they stop wearing neckties?
How intelligent is it to start the day
by tying a noose around your neck?
Send this to five bright women you know and make their day!!
Velma Jones
Mom to Johnna 14, Chelsea 10, KK 6 {Prader-Willi Syndrome, Asthma, Amblyopia}
and Zoey 2

Superbowl Tickets
Bob received a free ticket to the Superbowl from his
company.
Unfortunately, when Bob arrived at the stadium he
realized the seat
was in
the the last row in the corner of the stadium. He was
closer to the
Goodyear Blimp than the field!
About halfway through the first quarter, Bob noticed
an empty seat 10
rows
off the field right on the 50-yard line. He decided
to take a chance
and
made his way through the the stadium and around the
security guards
to
the
empty seat.
As he sat down, he asked the gentleman sitting next
to him, "Excuse
me, is
anyone sitting here?" The man said "No."
Very excited to be in such a great seat for the game,
Bob said to the
man
next to him, "This is incredible! Who in their right
mind would have a
seat
like this at the Superbowl and not use it?!"
The man replied, "Well, actually, the seat belongs to
me. I was
supposed
to
come with my wife, but she passed away. This is the
first Superbowl we
haven't been to together since we got married in
1967."
"That's really sad," said Bob, "But still, couldn't
you find someone
to
take the seat? A relative or a close friend?"
"No," the man replied, "They're all at the funeral."

An atheist is swimming in the ocean. All of a sudden
he sees a
shark in the water, so he starts swimming towards his
boat. As he looks
back he sees the shark turn and head towards him. His
boat is a ways
off
and he starts swimming like crazy. He's scared to
death, and as he
turns
to see, the jaws of the great white beast open,
revealing its teeth in
a
horrific splendor. The atheist screams,"Oh God! Save
me!"
In an instant, time is frozen and a bright light
shines down from
above.
The man is motionless in the water when he hears the
voice of God say,
"You are an atheist. Why do you call upon me when you
do not believe in
me?" The atheist, with confusion and knowing he can't
lie, replies,
"Well, that's true I don't believe in you, but how
about the shark? Can
you make the shark believe in you?" The Lord replies,
"As you wish,"
and
the light retracts back into the heavens and the man
feels the water
begin to move once again. As the atheist looks back he
can see the jaws
of the shark start to close down on him. All of sudden
the shark stops
and pulls back. Shocked, the man looks at the shark as
the huge beast
closes its eyes and bows its head and says, "Thank you
Lord for
this food for which I am about to
receive..."

Funny thing about this is that my daughter, age 32, just ran into it in
reality. She is a nurse, but she wants to stay working with early
intervention and get advanced degrees, so she is having to go back to take
undergraduate classes for an early childhood teaching certificate. These
include picking up more liberal arts stuff than she needed for nursing. So,
she is now in a world literature class with 18 year olds. She is feeling very
ancient. The first class the teacher referred to "the royal wedding," meaning
the 1981 wedding of Charles and Diana. No one knew what was meant. Then they
were assigned an African play to read. No one knew about Apartheid in South
Africa (well, I can't spell it). I remember in my early 30s becoming a
cultural resource for discussions of Woodstock and the 1960s. I think it is a
hoot to see the same thing happen to my daughter.
Lucille

Shelby, Jane ...
I give Spenser fruit juice -- always diluted with 1/2 water and 1/2 juice.
It's a good source of vitamin C which I believe helps in the absorption of
other nutrients. I also give Spenser a daily vitamin tablet (sugar free) and
a Tums full of calcium. That Tums takes the place of a second cup of milk
and saves him those calories.
After the dx, our dietician gave me a booklet explaining food exchanges for
diabetics. It gives a good basic sense about food comparisons and helps me
make decisions for foods served. For example, a banana is a very calorically
dense fruit. So I cut bananas in half or less for him now.
The dietician also put me through the numbing exercise of tracking grams of
fats, proteins and carbs for everything I put into his mouth for 2 weeks.
Doing that I could easily count the calories and learn portion control.
After 2 weeks I absolutely despised counting anything off of a food box, but
I have a good sense of dietary balance for him. Like Maria said, you learn
when to allow the extras and when to control it more carefully.
Linda
mom to Bram 6, Spenser 4 (PW) and Kennith 21 mos.

In a message dated 1/27/2000 8:36:41 AM Eastern Standard Time,
<< today's lesson: Think before you speak!!
this actually happened at Harvard University in October last year.
In biology class, the professor was discussing the high glucose
levels found in semen. A female freshman raised her hand and asked, "If I
understand you, you're saying there is a lot of glucose, as in sugar, in
semen?"
"That's correct," responded the professor, going on to add statistical
info.
Raising her hand again, the girl asked, "Then why doesn't it taste
sweet?"
After a stunned silence, the class burst out laughing, the poor
girl's face turned bright red, and as she realized exactly what she had
inadvertently said (or rather implied), she picked up her books without a
word and
walked out of class, never to return. However as she was going out the door,
the Prof's reply was classic. Totally straight-faced he answered her
question:
"It doesn't taste sweet because the taste buds for sweetness are on
the tip of your tongue and not the back of your throat."

In a message dated 1/27/2000 10:26:09 AM Eastern Standard Time,
<< Subject: Kids talk about marriage......

In a message dated 1/27/2000 8:20:26 AM Eastern Standard Time,
<<

All,
I probably should have given this advice out sooner ... but
in those early days, I used to take a hand held recorder so that I would get
all the information the doctor was saying. When you are with a doctor and
they tell you so much, its hard to assimilate everything. I needed time to
think about questions and about what was said. You must let the doctor know
what you are doing, by the way and why.
Maria

Bridget is just a baby isn't she? Arey was put on polycose formula the first
year. It is a carbohydrate powder added to the formula. I had to fight for
this. I had a pediatric nurse from the pediatric intensive care unit talk to
me about nutrition and what they do to help infants and children who are at
risk for failure to thrive and tube feedings. She recommended this. It was
with reservation that I got the prescription. But the doctor finally realized
that the nutrition was essential. Some doctors increase the ratio of formula
to water.
I will say that I am beginning to have one real concern about thinking about
the diagnosis and weight gain so early that focus goes off that the first two
years are the years children with PWS are more likely to go failure to
thrive. These two years are important for cognitive development. The first
years foods are not rich in sugars and calories and easy to keep in balance.
Parents are in control with feeding or over feeding. Babies need the three
meals a day (keep in mind the goal is three meals a day and a snack maybe in
the afternoon). Even after one, there is time to modify the diet. It is a
tough game to play and a real balance game has to be played with weight
issues that loom just beyond. I don't want to see babies that are 100 pounds
at four, but too much concern at one doesn't seem right either. When we
introduced those first foods and began to regulate the meals to three a day,
we started to remove the snacks in the morning and eventually, the
bottle/breast at night went to a cup of milk further and further away from
actual bedtime until the last thing eaten or for a drink was at seven. This
of coarse was perfect in timing for potty training.
Just some thoughts, you know your child best. And with what the doctor
says, nutritionists, other parents and anything you can get your hands on to
read, ultimately you must decide what is best for you and your family.
Maria

In a message dated 1/27/00 6:53:09 AM Pacific Standard Time,
KahlanRule@... writes:
<< (YES! I HAVE TEARS IN MY EYES
Maria-
You may be sentimental, but you're certainly no fool-That was beautiful.
Thanks for a great start to my morning-we're off to meet with the "feeding
team" at the hospital.
Debbie
Lauren's Mom

Hi Jane,
There is a website, www.specialchild.com, that has a diagnosis search
section. Your friend can put in all the characteristics of their child and
ask if anyone else knows what it is or has a child with similar issues.
There is also a bulletin board where they could also post questions. I hope
this helps them.
Take care,
Mary

I remember so well when after months of thinking that Arey would never do
anything, how I cried when he accomplished those first milestones. When he
was born, and we didn't have a diagnosis (FISH was negative) they said that
he probably had a stroke in utero, and there was a good chance he may always
be in this vegetative state (you know that really deep sleep, not really
there newborn limp baby days in the beginning, when they think that you have
a tomato). I would cry when people would comment on how good he was in
church. Inside I would scream - I DON'T WANT HIM TO BE GOOD - I WANT HIM TO
CRY! One dark night in the middle of my desperation a few weeks after he was
born, I had a sign from God (OK I didn't mark this inspirational) that he was
going to be OK). Not like other children, but that we were going to be OK.
He was a beautiful child and no matter what WE were ALL going to be OK. Then
he turned on! He begin to become stronger and more alert. Those first
milestones when he turned his head to the sound of the tub running, the first
real smile and kicking at pleasure, lifting his wobbly head, sucking from a
bottle, rolling over, talking and walking, were so memorable. After 6
children, he might as well have been walking on the moon I couldn't be more
thrilled. When I had to put him in his crib to take a shower, it was all so
normal (OK I know some of us hate that word) that I would cry. When I
watched him take his first steps, he might as well have been inaugurated into
the presidency. Now I am seeing him perform in the classroom with his school
mates the little songs that require hand motions and body movement. Just two
years ago, he needed verbal and physical cues to even watch the teacher.
Every little thing he does is a true gift. After all these children, he is
the one whose life I will remember every little detail. They are all so
wonderful, but he has taught me to stop and be thankful for all the little
things I take for granite every day.
Just last night, Arey accompanied me to training for vision screeners. He
showed the volunteers what a strabismus looked like so "that they could help
other children to fix their eyes". When someone thanked him, he said, "It
was my pleasure." I was in awe. There was my five year old who I was told
would never be able to feel emotions like anyone else, or socialize like
anyone else, being more of a gentleman than some adult men I know.
Thanks for sharing Mikey and Zach's milestones. It helps me stop during
these incredible busy days and smell the roses in my life. I have to go kiss
Arey right now!
Maria
(YES! I HAVE TEARS IN MY EYES

Go get 'em Amy. May Brett sit quietly, may your husband have his ears open and
be listening attentively and may you an Sierra be listened to. Good luck. Jane
P.S Bridget is 51/2 months old - just a wee tacker.

How old is Bridget, Jane? Sierra did the same thing as a baby! Keep your
chinup! And give her a big (((((((HUG)))))) from Amy and Sierra

Jane..
Let me look through my things today.. I think there is and organization called
SOFT that deals with chrom. 13 abnormalities. The reason I know this is that I
had a niece born with trisomy 13 4 years ago. she didn't live, but some children
do, often with devastating effects.
They determined that my niece died in-utero from a stroke. She also had liver
and heart malformations.
when I see my BIL today, I will ask him about the web site and I will let you
know.
Vicki

Good Morning All!
Well we're getting ready to leave for the GH appt! I'm sssoooo nervous! I
don't want to have to be A b$%^&*!!! Thanks so much for all the info
everyone!! The papers you sent were GREAT Angela! Thanks again!! Wish me
luck! Lord knows I'll need it!!
Amy
Mom to Sierra 5 PWS and Baby Brett 5 months

Had a weigh in today - not good news. Bridget has dropped down to the bottom
curve in both weight and height which really surprised me as I thought she was
looking almost chubby. Oh well can't wait to see the dietician now. Jane

I met someone today who has a 19 year old daughter with a defect on her 13th
chromosone. They have never been given a name for this syndrome. She is
retarded, can't talk and has eye problems and an unusual gait.They said they've
been searching the internet for years but haven't found anything or anyone with
a similiar problem. I was wondering if any of you web surfers know of any sites
that might help them. Jane

Now I never got a photo of snow like that ! Fancy having that outside your front
door - probably works as well as a red light.I guess it will eventually droop
just like all men. Jane

Hi
My name is alan and l live in Manchester.
My Cosultant is Mr N Kenny.
Manchester Royal Infirmary
Oxford Rd
Manchester.
I hope he can help you
Best of Luck
alan
Susan Wynn <smwynn_99@...
Hi, everyone - I received the following email from a woman in England who would
like to know if anyone out there with MHE has experienced similar symptoms -
also if anyone in the UK, knows of an MHE specialist who might be able to
consult with her obstetrician as to how MHE might affect her pregnancy. Linda
would very much like to be in contact with anyone who has any info, so I'll pass
the posts on to her
Thanks in advance for any feedback...
Susan
<I am emailing you in the hope you may be able to provide me
with a contact for my pregnancy consultant who is based at Barnsley
District General Hospital.
I am 34 years old and am 20 weeks pregnant, (I lost my first pregnancy
at 11 weeks earlier this year) Each pregnancy has brought with it from the
day I discovered i was pregnant excruciating levels of pain in my abdominal
area, that just can't seem to be managed and non of the medical staff that
have dealt with me haven't a clue where its coming from (bearing in mind not
one of the 9 consultants I saw even knew what MHE was!)I was wondering if the
many memebers of your support group may have experienced the same kind of thing
whilst pregnant and if there is any direct link with mhe and pain in pregnancy.
I received info from the English HME group that pelvic sceening for
tumours in that area is now available for any woman wanting to become pregnant
so as to rule out anything but this is now too late for me.
My Obtstretician has never had a pregnant lady with HME under his care
before and my HME consultant based in Birmingham could only tell me
that he had heard pain in delivery could be extreme and so to talk to my
midwife about possible caesarian delivery but could not provide me with any
generalised symptoms or direct links as each HME sufferer was
different.
I would be grateful of any help you could offer.
Kind Regards
Linda

This forum allows MHE-affected individuals/families to share their knowledge and
experiences. MHE affects each person differently. Postings reflect a wide range
of experiences, many of which may or may not affect you/your child/or family.
Postings are moderated, and contact is made by the MHE Coalition Officers when
neccessary

Billie,
Your package is on the way in the mail, in the mean time go the MHE Coalition
Web Site and read Newsletter #18 we have a list of Motels/Hotels there.
Chele Zelina
MHE Coalition President

Hi, everyone - I received the following email from a woman in England who would
like to know if anyone out there with MHE has experienced similar symptoms -
also if anyone in the UK, knows of an MHE specialist who might be able to
consult with her obstetrician as to how MHE might affect her pregnancy. Linda
would very much like to be in contact with anyone who has any info, so I'll pass
the posts on to her
Thanks in advance for any feedback...
Susan
<I am emailing you in the hope you may be able to provide me
with a contact for my pregnancy consultant who is based at Barnsley
District General Hospital.
I am 34 years old and am 20 weeks pregnant, (I lost my first pregnancy
at 11 weeks earlier this year) Each pregnancy has brought with it from the
day I discovered i was pregnant excruciating levels of pain in my abdominal
area, that just can't seem to be managed and non of the medical staff that
have dealt with me haven't a clue where its coming from (bearing in mind not
one of the 9 consultants I saw even knew what MHE was!)I was wondering if the
many memebers of your support group may have experienced the same kind of thing
whilst pregnant and if there is any direct link with mhe and pain in pregnancy.
I received info from the English HME group that pelvic sceening for
tumours in that area is now available for any woman wanting to become pregnant
so as to rule out anything but this is now too late for me.
My Obtstretician has never had a pregnant lady with HME under his care
before and my HME consultant based in Birmingham could only tell me
that he had heard pain in delivery could be extreme and so to talk to my
midwife about possible caesarian delivery but could not provide me with any
generalised symptoms or direct links as each HME sufferer was
different.
I would be grateful of any help you could offer.
Kind Regards
Linda

If you are displaced by Katrina
If there is anyone in our MHE family that needs anything please let us know.
If you or family members have access to the comp. e-mail us. If not phone me
at 281-476-9840-It will say Kevin's Forklift if we are not here leave a
message.
Hugs from Texas,
Alida

Hi,
I am new to this site and read your email and about the pain you are
in. Can I ask if you have ever had any children? The reason I ask
is my husband has MHE and I am ready for children, and he does not
want to because he does not want to put his child through what he
has gone through. We are considering adoption but it would really
help to talk to someone else who is in a similar situation.
I am sad about the prospect of never having the experience of being
pregnant, but after reading your email I am thinking that my husband
may be right in not wanting to do this to someone else.
Any advice or input you could give me would be greatly appreciated.
All the best to you in your surgery and recovery.
Thanks,
Angela

Other nice surgeons in Australia (the Melbourne
collection...):
Greg Hoy and John Salmon for wrists and elbows and hands
Peter Choong is a terrific orthopaedic oncologist
Mark O'Sullivan for general fixing of MHE damage (not so
much for monitoring for malignancy)

not sure if there is anyone else in the Brisbane, Australia, but I have
just had
an appointment with a new surgeon and he seems great. Easy to talk to,
understanding, understandable, familiar with HME (and associated conditions)
and young (not going to retire soon).
His name is Dr Jeremy Bartlett. If anyone wants his details, just give me a
yell.
Regards
Jodie
Brisbane, Australia

Hi Jodie,
I would love his details, I am 40 with MHE as are my two children 11 &
17. My boys are under the care of the Starship Children Hospital which
is great but my care is not quite so hot! Have had two surgeries in the
last 4 months, shoulder blade and shoulder. Anyway I am originally from
Australia and was treated at the Royal Melbourne Childrens Hospital till
I was 14 under Dr. Williams and Dr. Cole, as I have an Australian
passport and family there I would been keen to gather information on
other surgeons there,
Have a great day
Peace
Nathalie, New Zealand

just been told got to have 3 operations on wrist and fingers
then MRI scans on my shoulders
starts monday 12th
for now lets just see how it goes
Walking with crutches means that they do one at a time and not all at
once like l wanted
said prayers for everyone
especailly people caught up in the Hurricane, and people who are
helping out
keep you all posted
alan

thanks Susie, You're so very kind!! Right now, we can't get messages to
Julie', but I will ask the family members about what they may need. I'll let
you know!
Melanie

Melanie
From New Zealand my family and I send our prayers, I cannot believe the
devastation which I have only seen on the news here -
Kia kaha - stand strong
Love and peace
Nathalie Stephen and jack.

Well, I never thought that it would happen... I've been told for
eons that my hip could never be fixed, and that I'd have to live
pretty much the rest of my life (and I'm in my 40's) with a pain
level of 9+ in my hip. Well, I've complained loud enough to my MD
that I think he finally heard me, and I've finally got a decent set
of front face pictures of my hip & femor head (instead of from the
side), and it looks like it might be able to be fixed after all!
Appearently there is an exostosis that completely surrounds the femor
neck & head which of course enlarges the bone beyond the scope of the
joint. As a result, the hip catches, and occassionally I find my
self on the floor becuase of the severe pain. I'm going in next
Friday for a CAT scan on my pelvis and hip, and then off to another
MD for a "2nd opinion"
If they're in agreement, then I will have the exostosis removed
from the femor head & neck, and the bone reshaped. I have to check
with my job at the sheriff's department to make sure that I can get
the necessary time off from work for recovery and rest. I don't
particularily want the surgery, but I want to get rid of the pain,
and I want to be able to have a day without pain.
Thanks for letting me "dump" tonight....
Blessings & Peace,
Carol Kent

Family,
We have 13 Families in Louisiana

Melanie,
I'm so glad you are ok! I will continue to pray for those around you. Are we
missing anyone else? You are the only one I knew for sure was there. How about
the other states affected? Does anyone know?-Chele I guess you would know how
many families we are missing, if any.
Darleen
and to think....it was all started by just one mouse.

Melanie,
Is there anything we can do to help your family members? One of my
neighbors here in Michigan is loading up his vehicle with donated clothing and
food and heading down. Please let us know if we can help your family members or
send clothing/food donations to your daughter to distribute to those in need.
Susie
------ Original message

Melanie,
I am so glad to hear from you. We were so worried about you and your family.
My heart goes out to those that were in the disaster and those that are still
stranded in New Orleans and the surrounding areas. I wish everyone that lives
in the southern states my very best wishes and the strength to keep going on
everyday. I can't imagine anything worse. I just wish that there was more we
could all do to help our neighbors and our families that are still without help.
Best wishes to all,
Kristie

Angie, contact:
Sarah Ziegler
MHE Coalition
National Director and Coordinator of Research
149- 34 16th Road
Whitestone NY 11357
Tel: (718) 747-1701
Cel: (917) 841-2217
email: dinosarah@...
website: http://www.mhecoalition.com/
website: http://www.mheandme.com/

Melanie
Thanks for the e-mail I was so worried about ya'll.
Take care and know you are in our prayers.
Hugs,
Alida

Thanks Alida for the thoughts-you're a sweetheart. Katrina didn't hurt us at
all, but we're busy helping others, who have come here to get away from the
storm and now can't get home. We have several family members who are from
New Orleans and Mandeville-we're just glad that we now know where they all
are. My daughter, Julie', is in the middle of it all right now. She's a
paramedic and volunteered to help out. They're trying to help as many as
possible, but there are so many who are not letting them do the job needed.
I ask you for prayers for those still stranded, those who have lost so much
and those who are trying to help them all!
Thanks,
Melanie

Dear Angela
Please email me your full contact information to my email address listed
below.
I can take care of this.
Regards
Sarah
Sarah Ziegler
National Director of Research
MHE Coalition
149-34 16th Road
Whitestone NY 11357
Email: dinosarah@...
Phone: 718-747-1701
Cell: 917-841-2217
Website: www.MHECoalition.com
Website: www.MHEANDME.com

Hi All,
Its been about nine months since my son Jeffrey had surgery on both
ankles and his right knee.Now he has to have a very large bone removed
from the left knee.This is the first time that bone is being removed I
would like to have the bone sent to the reserch if I could.The thing is
I dont know who to contact so if anyone could help I would be grateful.
Jeffrey is scheduled for surgery on Sept.21 at Shriners Hospital in
Chicago.Jeffrey is 12 years old and growing very fast his doctor told
us that he will most likely have 3-4 more surgeries in 18 months.
Angela
Milwaukee,Wi

Kami,
Thank you,
Hugs Alida Korns

Just checking in to see if Melanie and family have checked in with anyone.
I talked to Chele last night.
We have other family members still there we need to pray for.
It was almost hard to take a shower this morning knowing all the people that
cannot shower and have not for five to six days. Can you just imagine how bad
they feel even if they are healthy?
Thanks to all who have kept them in there prayers.
Hugs from Texas,
Alida

My heart aches for all that people have lost or will lose. I pray
that our that our Country can truly help save those who have not been
reached yet.
I was sent this link about the donation of housing. This is a big
donation, but one that is obviously needed. They are looking for
available housing in many cities and states. I just wanted to throw
out one other possible way we can help.
http://www.hurricanehousing.org/
Please get this word out there, as there are still many displaced
people. While this might not be an option for some of us, maybe you
have friends and family that have the capability to do this.
Love,
Kami Voliva (Bonney Lake, WA)

Thanks, Alida for the well wishes. Honestly what I've been through
with this surgery is minimal compared to what's going on in the
South. I admire you for your ability to help out down there. I wish
there was something I could do to help, but I have my
responsibilities here with my family. I am honestly grateful for
what I have here. Watching some of the coverage of what is happening
there does make me realize how fortunate I am.
I pray that Melanie and her family are well, and I will keep them in
my thoughts and prayers until we hear from them and know that they
are safe.
Our thoughts and prayers are with all of those in areas affected by
Katrina.....
Shelly Muller
Utica, Kentucky

Hello everyone,
Shelly I am glad you are home. Sorry to have not said so sooner.
Has anyone heard from Melanie in LA.. I have not seen a post from her since
Katrina.
I hope and pray that everyone and everyone's loved ones are OK. I know there
has been devastation. We are going and helping at the Astrodome. All the area
churches are full and shelters. There are so many people. It is so sad it
really makes you feel lucky for what you have.
Hugs and (dryness) to everyone,
Alida
Deer Park, Texas

Alan, just keep us posted!
We will figure out something.
Chele Zelina
MHE Coalition

Hi alan here
I would love to make Houston but at the moment l am not allowed to fly,
operation pending.
If everything goes well, I hope to be there via my brothers at Detroit,
it depends on what they find, last time l went in for ONE simple operation and
they did 4.
I hope l will still be allowed in the conference IF l can make it.
I am due in on 28th Sept.
Please keep a place open just in case
HOPEFULLY
alan
Chele Zelina <CheleZ1@...
Family,
Thanks to all of you who sent in your registration forms by the
September 1st deadline for the ABC's of MHE Workshop to be held in
Houston, Texas on November 5. However, we are now receiving phone
calls and emails asking if it's too late to register for the
conference. Because this is such an important event, we want to give
as many people as possible the opportunity to attend and we are
therefor extending the registration deadline to September 25th.
Registration forms and fees must be received by Susan Wynn by
September 25. The forms and conference information are available on
The MHE Coalition Website (http://www.mhecoalition.com/).
If you have any questions regarding the Workshop, please let us know.
Please send in your Forms and Fees ASAP. We look forward to seeing
you in Houston!
Susan, Chele, Sarah and Donna
This forum allows MHE-affected individuals/families to share their knowledge and
experiences. MHE affects each person differently. Postings reflect a wide range
of experiences, many of which may or may not affect you/your child/or family.
Postings are moderated, and contact is made by the MHE Coalition Officers when
neccessary
SPONSORED LINKS
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Family,
Thanks to all of you who sent in your registration forms by the
September 1st deadline for the ABC's of MHE Workshop to be held in
Houston, Texas on November 5. However, we are now receiving phone
calls and emails asking if it's too late to register for the
conference. Because this is such an important event, we want to give
as many people as possible the opportunity to attend and we are
therefor extending the registration deadline to September 25th.
Registration forms and fees must be received by Susan Wynn by
September 25. The forms and conference information are available on
The MHE Coalition Website (http://www.mhecoalition.com/).
If you have any questions regarding the Workshop, please let us know.
Please send in your Forms and Fees ASAP. We look forward to seeing
you in Houston!
Susan, Chele, Sarah and Donna

I had a similar surgery on my ankle about 7 years ago. The difference
is that I was only 13 at the time. The bones were cut, and stapled
back together. It took more than 3 months to recover from that
surgery. My parents think it was more a result of my age, since I had
a cast for only 6 weeks of that time. Either way, it was a lengthy
recover process, but a surgery I needed. Now I'm doing well, able to
walk correctly, and even exercise. Good luck on your surgery!
Jenna Ingersoll

You said the doctor was in Baltimore... is it possable that he is connected with
John Hopkins? If so, then I'll bet he's good. Most of my surgeries as a child
were done at Children's Hospital, Baltimore a part of John Hopkins. I would
follow up on Mike's recommendations and go from there.
Joel Davis

I don't know the doc but I have had similar surgery on my right ankle. They cut
the 2 leg bones and reattach it to the ankle using a titatium plate on both
sides and screws. My operation is called a closed wedge osteootmy.
How long it takes to recover is dependent on your age and the extent of other
mhe problems. My doc says it is not uncommen for it to take 6-9 months til the
leg gets used to the new structure. You might want to get as many opinions as
possible, Also read the article by Dr John Dorman on mhe. Biggest risk is risk
of infection.
I would ask the doc how many of these surgeries he has done, the outcome and any
complications that might arise.
Bottom line is it it isn't much fun but for me there was no other option. I hope
these tidbits help
Mike

Went to see my ortho Dr last Fri and he sain my ankle needs operated
on. The ankle and the foot are supposed to be perpidicular to each
other and mine is at about 25 degree angle. He recommended a Dr in
Baltimore, MD by the name of Mark Myerson. He is a ankle and foot
specialist. Has anyone ever been treated by him or heard of him. My Dr
said he would have to cut my bone and make it line up right. Anyone
ever had this surgery done? This is the first surgery I have had to
have for about 9 yrs. Thank God my 3 yr old son has no signs of MHE.

I know that we have several family members here in the path of the horrible
monster of a hurricane. We were spared by Katrina but it hit south Florida as
you know before it left. Now is it way worse than it was in our state. Please
join me in praying for all of our loved ones here in our family as well as all
of those we don't even know. This is going to be very bad. Obviously, we won't
here from anyone for a while after it hits so if someone hears from anyone,
please post it.
Darleen
and to think....it was all started by just one mouse.

Shelly,
Wanted to make sure you know I will be thinking of you tomorrow. Good
luck! Ended up out of town and off line.
Love,
Max

Thanks, Max.
I'll post sometime tomorrow about how it goes, unless it gets postponed
because of my cold.
Shelly

Well, tomorrow is my surgery-I'm really anxious to get it over with.
It would be better if I hadn't caught a cold over the weekend. I'm
hoping that it won't postpone my surgery. I called my doc's office and
told them about it and they assured me they would determine with the
bloodwork that morning whether or not my surgery should be postponed
because of it. On top of that, I also have to deal with my period at
the same time. I'm a week early-very frustrating.
I'll post Friday sometime to let everyone know how it went. I doubt
I'll feel up to it Thursday evening when I get home. I really hope
they don't postpone my surgery because of my head cold. I'm feeling
better, but I'm still congested. I haven't run a fever at all with it,
so I guess that's a good sign.
Hello,
Shelly Muller

Deena - First of all, so sorry for your loss. It sounds like you have been
through quite a lot, and I hope you're feeling better, physically and
emotionally. I'll do my best to answer your conference questions...
1. You are correct - the only part of the conference open to individuals with
MHE and their families (children over 13) is the ABCs of MHE workshop and the
following "reception". The scientific sessions are closed to everyone but the
invited participants, who have been carefully chosen and agreed upon by the
organizers of this conference and members of our advisory board. This type of
closed setting with a limited number of participants was found to be extremely
effective in the first conference in Arizona. This format created an atmosphere
which allowed the participants to brainstorm freely, exchange ideas - and in
many cases, to team up with other scientists to form new research
collaborations.
However, the information that is presented during the scientific portion of the
conference is going to be shared with us at the ABC's workshop. Dr. Dan Wells
will present an overview of the scientific portion. Dr. Hecht and Sandra
Darilek will present the results of the pain study. Harish Hosalkar, associate
of Dr. John Dorman's and a co-author of the orthopedic section of The ABC's of
MHE will address orthopedic issues, and John Herzenberg is going to present on
fixators. Dr. Sinha is going to do a presentation on chronic pain and the need
to treat it, and Wim Wuyts, of the University of Antwerp, is going to present on
the genetic aspects of MHE.
2. Deena - of course we will welcome "MHEers who espouse non-western
traditions of healing and who do not think that surgery is the best way to go
under all circumstances." One of the purposes of the conference is to educate
on different types of treatment. We do not tell people what treatment they must
get; that is an issue between an individual and his/her doctors. What we do try
to do is give people information, including some of the options available to
them, and you may have some valuable information to share with others interested
in alternative treatments. After the presentations, there will be time for
questions to our speakers.
3. There will definitely be time to talk about research efforts (both current
and future) - as all the scientific and medical participants have been invited
and are encouraged to attend the informal reception following the workshop - to
meet face to face and talk with the people who will be affected by what happens
in their labs and offices... The reception will be from approximately 5 p.m. to
7:30 p.m.
Please let me know if you have any other questions.
Susan

Hi, again! Here's another reminder to please get your conference registration
forms to me by September 1st! We need to know how many people are coming, and
unfortunately it's not enough to post that you plan on being there. We need an
official count, and there are lots of arrangements that need to be made. Info
and registration forms are posted on the MHE Coalition website. If you have any
questions, please let us know.
I hope to hear from more of you soon!
Thanks,
Susan

Hi
Sorry this is so last minute--I was dealing with a
friend's suicide (which ended up with me fending off
1,000 people at his estate giveaway--in a
wheelchair!), another hospital round for a bleeding
ulcer, and massive workload.
I had a couple of questions before registering for the
conference:
1) Sessions will be closed to the public. Does that
mean that people with MHE cannot attend the medical
sessions? Will we only be able to go to the ABC
workshop?
2) Will you welcome MHEers who espouse non-western
traditions of healing and who do not think that
surgery is the best way to go under all circumstances?
3) Will there be a chance to talk about future
research efforts and directions?
Thanks
Deena

Julie - It's important to let the teachers know that Jake does suffer from pain,
discomfort, stiffness, etc., and needs to find acceptable outlets. There are
certain things that can help with the need to fidget. Nicole uses a stress
ball, and she has a seat cushion that was actually designed to help kids who
have trouble staying put! It was recommended to her by the school's
occupational therapist, and it addresses both the need to fidget and also the
pain of sitting in a hard school chair when dealing with hip and pelvic
exostoses. She's been using the cushion for years, and carries it with her from
class to class.
It's impossible to know what situations will come up, but it's just good to let
them know about some of the issues. Sometimes kids have very poor handwriting -
and some teachers just don't understand that it's related to exostoses in the
fingers, hand and wrist and try to make the poor kids practice their penmanship
even more, causing them more pain and fatigue, but no improvement in writing.
Print off the MHE and Me Handbook from the MHE and Me site f(www.mheandme.com)
or each of the teachers, school nurse, etc., that need to have this info. Go
through it and highlight areas that you think pertain to Jake. Behavior issues
in young children are addressed on page 6. You can also print off relevant
sections of the Orthopaedic section of The ABCs of MHE on the MHE Coalition
website (www.mhecoalition.com). Sometimes people just don't perceive MHE as
being that "big a deal." The documentation will help them understand that it
is.
A very good resource is the Therapy Shoppe (www.TherapyShoppe.com), which has
the seat cushions (Move 'n Sit, Fit-Sit, etc.), lots of items for fidgety kids,
lots of different items to help with writing, etc., etc. This was recommended
to us by the school OT, and I've ordered several items from the catalog (which
is also available online).
Hope this helps!
Susan
(pine island, ny)

This is the first year that Jake will attend all day. How have you
helped teachers to distinguish between behavior (aggression and/or
fidgeting) born of discomfort rather than hyperactivity?
Thanks!
Julie

Laurel,
Your email choked me up. What a great Mom and a great advocate for Lucas! May
you both have a good, healthy school year.
--Barb
Mom to five, one (Chandra) with MHE

Hi Everyone:
First thank you for the we care package this summer for Lucas' leg surgery. He
is
back on his feet and walking just in time for school. All three children liked
getting
surprise gifts in the mail.
Tomorrow is my annual "back to school" meeting with the teachers and staff that
will be
working with Lucas. I am bringing:
1. Donuts
2. Fruit
3. plate and napkins
4. MHE Handbook
5. MHE brochure
6. MHE info on school concerns and pain management
7. Spreadsheet showing upcoming Dr. appointments
8. Spreadsheet showing "points of concern" - places where Lucas is bothered
the most.
9. Video that Medtronic made about Lucas's spine surgery.
10. Copy of his 504 plan.
Even though I think I am prepared, there is still a bit of nervousness.
Am I forgeting anything???
Thanks,
Laurel

My daughter also has a growth on the inside of her upper arm that kind
of looks like the size of a small ball. So far (she is almost 4) her
movement is not limited and she doesn't complain of any pain. She is
aware of it, however. Her bones/bumps are routinely checked at Gillette
Children's Hospital in St. Paul, MN (every 6 months until she is about
15 years old or so). So far this particular bump appears to be keeping
pace with her growth.
Don't know how common it is, but the humerus is a long bone and the
bump is at the growth plate which seems consistent with MHE.
Best of luck to you and your son.
Michelle
Minneapolis, MN
On Aug 18, 2005, at 7:07 AM, jacob500002000 wrote:
My 11 year old son has MHE. He has alot of extra bones throughout the
body. He has already had one surgery when he was like 5 and faces alot
of them when he is 14 or so. I had several surgeries during my
adolescence so you know where he got it from He has a big one that is
on the inside of his upper arm but not hitting his armpit. It does look
like it has grown since his last visit sith the orthopedist in April.
He says it doesn't hurt. He goes to Childrens Hospital for his
orthopedist appointments.Is that common. It looks like the size of a
small baseball. Should I get it rechecked?
My son also went through pre puberty at age 10 where some of his bones
obviously grew with him. Since then htey stopped puberty with a hsot he
gets monthly until around age 13. My question is when puberty starts
again does all his bones grow more even the ones that grew before. The
endocrinologist didnt know. He wi,l essentiallyb e going htrough
puberty twice. thanks for any info. Jen
This forum allows MHE-affected individuals/families to share their
knowledge and experiences. MHE affects each person differently.
Postings reflect a wide range of experiences, many of which may or may
not affect you/your child/or family. Postings are moderated, and
contact is made by the MHE Coalition Officers when neccessary
SPONSORED LINKS
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Alan,
You have a bone sister in Michigan. If you make it to Michigan to visit your
brother, let me know.
Take care,
Susie

Hi.
I am new to this site and reading some of your messages and the support that
comes across is fantastic. You all seem there for one another.
I have this condition most of my life, and was always being told my the doctors
my case was rare.
When growing up l have had numerous operations to remove bones from my legs hips
arms and back.
Unfortunatly in the sixties little was known of my condition,.
This helped me alot, l was never allowed to feel sorry for my self, -
With both of my legs in plaster my friends would put me in goal, l broke quite a
few pair of cruthes.
I tried to participate in all sports but eventually one by one over the years l
was not to play them (doctors orders to many minor injuries ).
My greatest feat was learning to do the eskimo roll in canoeing, because l
cannot swim, well to the bottom and back.
My worse moment was when l was 14, l hate deception and was in the wrong place
at the right time.
I always wanted to go on the school trips, but my name was never pulled out,
By chance l overheard 2 teachers talking, my name was never put in ,no insurance
cover adults can be cruel when trying to be kind,l got one weeks suspension foul
language to the teachers words l did'nt think l knew just flew out of my mouth
loud to l think all the school heard, it took about 30 minutes to calm me down.
if they had told me in the first place l would never have put my name forward.
My proudest moment happened only 2years ago in MIchigan.
My then 9 year old neice asked me to come in class and tell them all about
England. They were great listeners, but then question time what was suppose to
last 5 minutes lasted over one and a half hours.
One of the children asked why my left foot was shorter than my right foot
l then told him and the reply was WHY so l ended up giving the class my lifes
story.
You know it was great because children are so honest they ask all thright and
arkward questions and expect answers.
Now l am friends with them all and they come across and chat when l go over to
vist my brother.
Sometimes people think you are thick because you are disabled, these are the
people l would love to educate
Anyway 3 in the morning here 80degrees and l will try to get some sleep
What l am trying to say is this l treat my disability as second nature and we
all have are ups and downs, and as long as l have the contiuing support of my
family and friends l try and live life to the full.
Thanks for listening
Alan

Mike,
I have a wheelchair and scooter I can pick you up at the airport and have
either there.
If you want to come don't think you have to be able to walk. I didn't walk
for two years.
But I know where you are coming from. If the pain is to bad I do understand.
I just wanted you to know you are always welcome.
Hugs,
Alida

Jen -
My 10 year old son is going in for surgery in two weeks to have a
bump removed from underneath his right arm, near his armpit. The
only reason that they are removing it is because is has been giving
him a lot of pain, especially when he plays baseball, football, etc.
Our doctor has been very conservative as far as going in and removing
Braiden's bumps - unless they are giving him a lot of pain or are
affecting the growth of his bones, etc, she does not want to
operate. My wife and I appreciate that.
Not sure if this answers any of your questions or not -
Brian

My 11 year old son has MHE. He has alot of extra bones throughout the
body. He has already had one surgery when he was like 5 and faces alot
of them when he is 14 or so. I had several surgeries during my
adolescence so you know where he got it from He has a big one that is
on the inside of his upper arm but not hitting his armpit. It does look
like it has grown since his last visit sith the orthopedist in April.
He says it doesn't hurt. He goes to Childrens Hospital for his
orthopedist appointments.Is that common. It looks like the size of a
small baseball. Should I get it rechecked?
My son also went through pre puberty at age 10 where some of his bones
obviously grew with him. Since then htey stopped puberty with a hsot he
gets monthly until around age 13. My question is when puberty starts
again does all his bones grow more even the ones that grew before. The
endocrinologist didnt know. He wi,l essentiallyb e going htrough
puberty twice. thanks for any info. Jen

Greetings,
Jennifer, my phone number is (302) 672-8052. I live on the east
coast so keep in mind the time differences when you call but please do call.I'm
not sure how I cab be of help but I am always happy to meet a new bone brother
and am willing to talk about my experences with MHE and listen to anyone.
I saw my doctor the other day. It went far better that I
figured it. He came singing a different tune from our first meeting. I had a leg
brace on cause my knee had swollen while I was at Jimmy's (a 'good' swelling,
I'd do it again any day.. the trip was worth every bit of it!) and the brace
keeps me from bending my knee which alows the sweeling to go down. He asked why
the brace and I told him. He had his x-ray tech take me and had x-rays of both
knees done. He came back with them and said the good news was I didn't need a
knee replacement to which I said that's good because there was no way I would
let anyone do that on me! he asked why and I told him about a bone brother who
is going through hell because of a knee replacement that has gone bad from the
get-go. My doc then had me get up on the table and started twisting my leg in
all directions. Then he started puching his thumb in it all over till he found a
spot on the inside of it that got a reaction out of me. he said he thought that
I may have a slightly torn cartlige (sp) and set me up for a MRI that I had done
today. Of coarse I won't know anything for a couple of weeks.
The doc said that if it was that, he could fix it with a pin
hole operation and that it wouldn't keep me from going to Houston. I said thats
good cause even if I have to be wheeled in on a streacher I ws going to Houston!
Now, let's talk about my shoulder... you know, the one you said i should just
live with..." I told him that the pain was too much, that I couldn't sit and
type for more than 5 minuates without my shoulder feeling like it was on fire
and that i had tried raising and lowering my chair to see if that made any
difference and it didn't. And that the burning was nothing compaired to when I
move it worng and it grabs whatever the hell it was grabbing... that felt like I
was hit with a bolt of lightening. he put one hand on my shoulder blade and
moved my arm with the other..'POP' went my shoulder. he said I heard and felt
that! i said you should be on this end of it, Doc! Again, he said that this was
a lot more than a pin hole ooperation and said yes, I know but something has to
be done but not till after I get back from Houston. he agreed and then told me
the best thing he could think to do would be remove the lower part of the blade
where the knot was.
I do belive that in the couple of weeks between my first visit and this
one the man must have done some research on MHE... he was a different
'specialist' from the on eI met the first time! Who knows, maybe we can teach
these old dogs new tricks!lol
God bless
Joel Davis

Kyle is doing pretty well. He still seems to tire pretty easily
though. Tomarrow both his leg casts are to be removed. He also has
an appointment with Genetic Counsling in the morning. This should make
for a long day!
The next step will be PT for his legs. Kyle has been walking around on
his casts for the last few weeks. He really enjoys being able to get
around although it is a chore to do so. I wonder how long it will be
before he is able to walk again. Is it pretty quick? School starts
here the 1st of September an he wants to be walking unaided by then.
Thanks again for the Care Package! He really enjoyed everything!

Dear Jennifer
I would love to call you and your husband David. Please email me your phone
number.
Regards
Sarah
Sarah Ziegler
National Director of Research
MHE Coalition
149-34 16th Road
Whitestone NY 11357
Email: dinosarah@...
Phone: 718-747-1701
Cell: 917-841-2217
Website: www.MHECoalition.com
Website: www.MHEANDME.com

Hi Joel!
I can relate to you bro! I think we all do some adjusting to pain and
limitations. Doesn't mean that it is okay. I saw Dr. B. today about the pain
and popping in my right wrist. He moved my wrist around, this way and that,
and I let him and didn't say anything. He looked at the x-ray and didn't see
anything abnormal for a MHE'er with malformation. So he said he thought it
was tendonitis, but I hadn't said it hurt when he tested me for it. He
showed me which movement was the 'test'. I said it did hurt, just not enough
to have said ouch. I did it a couple of times to myself and said, yep, it
hurts! All the time he was looking at me like I'm crazy! Apparently, lifting
them weights at the gym caused me to develop tendonitis in my thumb and I
will now have to wear a spica thumb support! No surgical fix except to cut
the tendon and they won't do that unless it gets severe. Back to adjusting
to pain and limitations.
So how did the appointment go??????
---Tessa
Olympia, WA

Thank you for responding to my post. My husband is a wonderful man,
but I swear he wants to deny his MHE. I know what he went through as
a child and I know it was beyond difficult for him. Not just the
pain from the surgeries, but the fact that he was only allowed to see
his parents 2 hours a week when he was in Shriners in MA for
sometimes 6 weeks plus at a time. We now have a son with MHE and I
can see how difficult it is for him to see Drew go through the things
he has in his first 14 months of life. Medicine has come a long way
since David and yourself had to go through, but it is still hard.
I wish someone would call him because I swear at times he thinks he
is the only person on this planet who has MHE. It hurts him to read
other people's stories, but he needs too.
I'd love to send you a calling card or if you could just call him for
30 seconds I could get your number because we have free long distance.
God bless, Jennifer
XXXXXX

Hey Joel,
I sympathize with your plight. I happen to read this article and I was thinking
of you and all the mhe people that are on disability.
However the new thing coming down the pike from the owners is to cap Medicaid
health care spending. Part of their ownership plan. See
http://www.cnn.com/2005/POLITICS/08/16/medicare.ap/index.html?section=cnn_latest
What they would do is give you x amount of dollars for you to spend on
healthcare anyway one chooses. This is in South Carolina but if they are
successful it will go nationwide in a flash. I would have thought there would be
disabled people camped in front of the statehouse. Unless this is nipped in the
bud everyone that has a chronic medical condition will feel the pinch. I don't
think writing to the politicians will do any good because it cannot overcome the
bribes and campaign contributions that determine their vote on each and every
action. My point Joel is to enjoy and make the best use of what you have cause
it may very well be taken away.
I hear the bushies have the same plan for Medicare.
This week my foot and leg seems to be better. If it continues till next week I
will book my Houson flight for Nov. I will prolly come in on Friday and leave on
Sunday.
Mike

WELCOME ALAN,
You have found the best place in the world for unique people like us. There
are amazing people here always ready to help.
Hugs from Texas,
Alida Korns

Hi Everybody.
My name is Alan and l am from Manchester England.
I have suffered with this for 45 years since l was 3 years old when
it
was first noticed, probaly all my life so the doctors say.
Its so nice to know I AM NOT UNIQUE

Thanks for the info, Alida. I hope your mother-in-law is doing better. My
mother had back surgery almost ten years ago to replace some herneated discs
that were caused by a car wreck. She was in bed afterwards for months, so I
know it's not easy.
Hopefully you can get all or at least most of your medical issues worked out
before the conference. I'm glad to hear your stomach is doing better though.
I'm still debating whether or not to fly or drive. I'm about fifteen hours
away from Houston, according to Mapquest. The cheapest ticket I found to fly
was almost three hundred fifty dollars roundtrip, so I'm not sure which would
be the best way to go yet. Will have to wait and see how the money goes....
Hoping to be at the conference,
Shelly in Kentucky

Jenni,
First, let me welcome you and David to the 'Family'! Glad you found us.
As fro a 'quick fix' Lord, don't we all wish there was such a thing! The only
quick fix I can think of is a hot shower, as hot as he can stand it. My right
shoulder causes me a lot of of pain. I have a 'knot' on the underneath side of
my shoulder blade, one of the small, sharp hook types. If I move my arm in the
right direction ( guess maybe I should rephrase that; in the wrong
direction!lol) it rubs on something and causes extream pain like an eletrical
shock that can travel down my arm. I don't see a doctor as much as I should but
I went to a 'shoulder specialist' several weeks ago. It was the first time in a
long time. I told him about my shoulder and showed him a set of x-rays I had
with me. After studying the x-ray he looked at me and said ' You know this isn't
am orthoscopic surgery, right'? I told yes, I had one on the other shoulder in
just about the same place when I was in my teens and that my Doctor at the time
had to remove the blade to get to it and I've got the scar to prove it. This man
just looked at me like I was asking for the impossible! 'I think you can lice
with it! Just don't lift any weight with your right hand, don't raise your arm.
You've had this (condition) all your life, you know you have to make
'adjustments' for it.'
At the time I agreed with him. Yes, I have had this all my life and yes, I
have had to make many 'adjustments' for it. I live with pain daily so what's a
nother pain? Well, I go back to the fool today. I plan on starting out being
nice but I have a feeling that 'nice' isn't going to last long. 'What's one more
pain?'... I'm going to tell him... it's one pain too many, that's what! I know
by this doctor's response to this a few other things (like telling me I'm
getting older and we all pop when I told him my knee pops with every step! He
didn't even think of getting an x-ray!) that this fool knows nothing about MHE
and is not educated enough to give me the help I need. I'm afraid that I am
going to have to insist that he realizes this fact and that he sends me to
someone who can.
David should call his doctor and explain to him that he is in pain and
that he needs to be seen befor 8/31. I wish there was a better 'quick fix' than
heat but I am afraid there isn't one at this time. I pray David has better luck
getting help than I have had of late.
God
Bless
Joel
Davis

The airport really does not matter they are both close so which ever flight
is cheaper.
Hobby & Bush Intercontinental.
Sorry I have not been on-line busy with the doctors. Taking my mother in law
who lives in Orange (Two hours away) to medical center she had back surgery in
March and not doing well so she came here to a specialist. It Is a long story.
I am doing better, just the normal aches and pain. But the stomach is
somewhat better. I go for a colonoscpy? on Tue next week. Still having
constipation
problems and left side pain(colon) maybe. Shit who knows, I am just sick of
doctors.
Love you all and can't wait to see everyone.
Trying to plan some other things.
Let me know what ya like to do.
We will have a great time as well as getting all the impute from the
conference.
Hugs,
Alida

Shelly
Head for Bush International
Chele Z

Hey Alida,
I've noticed in my searches of different travel sites that there are
two airports in Houston. Which one is closest to where the conference
is going to be held? Or maybe I should ask which airport you would
recommend. Thanks!
Shelly
Kentucky

I have files and files on my son. Doctors have been great at giving
me reports, findings, letters with their thoughts etc. He has had a
multiple procedures for multiple issues, not just MHE. I've lost
count of the number of specialists he's seen for both specific and
on-going problems. Yesterday I took him to see an opthamologist and
as I sat there, I couldn't tell the doctor which eye I was worried
about after a regular eye check at his annual physical because he
had been in to see his ped a couple of times since then for asthma
and illness. I can't keep his medical history all in my head anymore.
For the most part I am the link between all his specialists. They are
very good about sending each other copies of notes when I ask. His
ped is a fairly good "central location" where I try to make sure
everything ends up, but truthfully, we've moved three times since he
was born six years ago and I'm not entirely convinced his complete
records have followed. Additionally, there are all the interventions
that are going on at school. I have a great school and get reports
from special ed, counselors, his teachers, OT's, etc. Sometimes they
need copies of things from doctors and I have trouble finding them
depending on where we lived at the time and which box it's in.
Have any of you made any kind of summary for yourselves? Do you have
a filing system that works? Have you identified any patterns that are
useful through record keeping?
Head spinning~
Julie in Columbus, OH

Thank you, Melanie. We appreciate that!
- Brian

Susan,
Good questions. I know that Jeremy is a junior in high school and we have a
program here called Vocational Rehab. We have already been in touch with them
for when Jeremy graduates high school and heads off to college. As far as his
insurance goes, it won't change because he is on disability. Jeremy does have
mobility issues on his bad days; but most of his problems are with writing,
typing, and general stuff like that. I hope to get all the answers that I need
before he decides to head off to college; and putting together a handbook about
this is a great idea.
On another note; Jeremy and Sasha both had surgery last Wednesday; and both
of their surgeries went great. Sasha is expected to heal within a week; as she
has no pain now and the surgery didn't seem to bother her at all. Jeremy had
more work done; the doctor took 3 out of 5 tumors out of his shoulder and he is
still in pain and will miss the first few days of school. Jeremy also has to
go back to PT in a few weeks for about a month to work on ROM and
strengthening his shoulder back up. Sasha had her wrist done; and she doesn't
even go back
for a post op appointment anytime soon.
Krisite

Chele
Just wanted to let you know I have moved, I am no longer in Melbourne, but in
Brisbane which is in the state of Queensland.
The Ortho I had in Melbourne that just did my knee operation has referred me to
another here, Dr Jeremy Bartlett, who is familiar with HME. I have an
appointment to go see him in a few weeks.
Jodie
Brisbane
Australia
This message was sent through MyMail http://www.mymail.com.au

they've lost most of their social life due to frequent surgeries,
inability to participate in many activities due to fatigue,etc.
College, for me, was a new beginning. A new chance to meet people, a
new chance to have friends. I didn't have much of a social life
before college, and now I have more friends that I can count on one
hand, or even two. Whereas before college, my only support was my
family, now I have all of my friends supporting me. I made sure that
they knew what I was dealing with in terms of MHE, and so they were
the ones driving me to the doctors, sitting and chatting, finding
ways that I could hang out without too much activity. My sister's now
going to college, and though she doesn't have MHE, I tell her what I
tell everyone...be yourself at college and the rest will unfold.
Most college students are still dependent and can be covered by the
same insurence that they are throughout high school. If that isn't
the case, most, if not all colleges, have a college student insurence
plan that covers the 4 or more years, while at that college. One of
my friends has both the school insurence, as well as her family
insurence, because she felt more comfortable. Believe me, the options
for health insurence are endless.
also able to get accommodations in college? Including addressing
mobility issues, what about issues such as extra time for taking
tests, and other basics of an IEP?
Talk to the school. The clinic, the deans, everyone. Let them know
whats up. Thats the thing that helped me when I got a blood clot from
MHE my freshman year. They then arranged for a parking pass, rides to
the hospital, and even offerred me an option to take off a semester
with full reimbursement. I didn't take that offer, but it was still
more than I expected from the administration.
Alright, as I said, I'm moving my sister into college today (what an
appropriate subject to be writing about!) My little baby's all grown
up!
Jenna

I've been reading the posts about college with great interest... Nicole is going
into her junior year in high school and this is all info we're going to need.
All those kids who were dealing with problems in elementary and middle school
when we started MHE and Me are now entering college age and are faced with a
whole new set of challenges that we should address. There are lots of questions
that a lot of high school kids and their parents have, and it looks like we have
quite a few experts out there! I definitely would like to do a section on this
for MHE and Me and perhaps a newsletter article for the Coalition...
Some of my questions...
What do you look for in a college campus when your child suffers from severe
fatigue and has difficulty walking distances, dealing with lots of stairs, etc.?
If you've had an Individual Education Plan in high school, are you also able to
get accommodations in college? Including addressing mobility issues, what about
issues such as extra time for taking tests, and other basics of an IEP?
How do kids who are nearing college age deal with social issues, if they've lost
most of their social life due to frequent surgeries, inability to participate in
many activities due to fatigue,etc.
What about health insurance for college students?
These are just a few of my questions. I'm sure I'll have lots more ,and I would
love to see more issues presented, and more of our college kids and graduates
share their experiences and wisdom.
As a matter of fact, would someone out there like to take a crack at putting all
the info together? Would someone who is good at finding resources like to try
to put together a list of online resources to get info on these issues as well?
Let me know what you all think of the idea, and if there are any volunteers!
Thanks!
Susan
Susan Wynn, Vice President
The MHE Coalition
www.mhecoalition.com
Co-founder & Director,
MHE and Me
www.mheandme.com

Lee,
I'm 20 years old, and attending the University of the South, which is
a small liberal arts college. When I first got there, I immediately
talked to the school clinic, explaining the surgeries and
circumstances associated with MHE. They had "Temporary Handicapped
Passes" for students who broke their leg, or couldn't walk long
distances. You may want to look into what the school does for broken
legs or the such...because those students can't walk long distances
either. I had the pass for the entire year. It allowed me to park in
handicapped spaces only on campus, but then again, that was all I
needed it for. So my suggestion is to talk to health services at his
University...see how they would deal with the situation.
Jenna

Question? My LT forearm is bowed. My radius bowes due to the fact,
my
ulna is short. On my Lt hand my Middle finger is the same size as my
pointer and ring finger. I have pain all the time.
The question I have for you is, Is your Forearm bowed? And you
mention
something re; your radius, however, if you have what I have from what
I
found online is that what caused pain in your wrist. I can be wrong.
But, there are no specialist, and all the ortho's in my area will
not
take me on as a patient. So I turned to the internet for all my
answers.
Good Luck with your Surgery. I will say a pray for you! Hope you
have
a fast surg. and a speeding recovering!!
Karlyn

Hey, I am 22 Years Old. My name is Karlyn. I suffer from MHE and I have over 7
surgeries. I am also have some physical deformity to my legs and LT forearm. I
am also a junior in College. I worked in a doctors office for 4 years. So I
would love to give you so advise that I know you need, so your insurance company
will pay up. If you dont mind me asking, what is your health insurance? exp,
BCBS, Oxford? Only reason why I ask, is because I know what you will have to do
so they will approve it or refund you the money. Have someone at your son's doc
office whether, his primary doctor, or orthopedic doctor. Have them call your
insurance company and have them talk to your insurance company. Have the doctor
write on a prescribtion pad, (Rx) exactly it is you bought or need for you son.
With his dx. which is MHE, severe muscle pain, and most importantly decrease
inmobility etc... This should get them to approve. Don't worry, they will work
on it to get an approval. However, since you
already bought it out of your own pocket, also give the girls in the office a
copy of the bill, so they can summit the bill to the insurance company. You can
also call, however it would be better if you have the doctor's office call.
Most likely they should cover something. Let