Re: need advice immediately

December 23, 2003

I agree, I would NOT LEAVE until they admitted him. Get your family doctor

on your side or another doctor you trust. Keep us posted and don't give

up...what is with those doctors???? 20lbs the guy has lost, that is NOT

normal...

Weir

Mom to Kennedy, 5 yr old CHARGEr, 14, 12 and wife to Graeme

New Brunswick, Canada

Visit our family web site: http://personal.nbnet.nb.ca/gweir

CHARGE Syndrome Canada: http://www.chargesyndrome.ca

need advice immediately

Message-ID:

My son ph is 21 and has cHaRGE. He began vomiting on Thanksgiving

Day.

We are now into day 27 of the vomiting, and he has lost 20 pounds. He is

now

skeletal in appearance. I have had him to the doctor and the emergency

department. Yet this boy has not been admitted to the hospital or checked

for

anything other than labs. His liver function is normal, enzymes on

pancreas is

normal, white cell count normal. These were done two weeks ago. He is

having

bowel movements so there is no blockage, no fever, and everything is

pointing to

his gallbladder, yet no one has bothered to do any tests for it. I have

begged the doctor to admit him, yet he says his labs don't merit an

admittance. I

have asked for a referral to another doctor and they are dragging their

feet

on this. If I take him back to the emergency department they will just

call

the doctor who is doing nothing. It will take weeks to get an

appointment with

a doctor at Riley in Indianapolis. This child does not have weeks. He

is not

even strong enough if it turns out to be his gallbladder to withstand the

surgery to correct it. This child is going to die without some help. He

is

starving to death. They won't even put in an IV feeding line because

they are

afraid he will pull it out, he has some SIB. He has never bothered an IV

line,

and he's had plenty. He is never left alone and always has had 24 hour

supervision. I have every intention of camping at the hospital with him

and doing

all of his care except what the nurses have to do. I can't seem to get

anyone

off their butts and do something for this child. It's almost as if they

are

just going to let him die. I am desperate. I need some advice as soon

as

possible. He can hold nothing down, we have been giving Phenergan

suppositories

since this started. When he gets those he's so weak, he sleeps and then

won't

take anything for nourishment. I am open to any suggestions. I am so

past mad

at the medical community. This boy is dying and they don't really seem

to

care. Thanks.

Crickmore Mom to ph () 21 year old cHaRGE

I have emailed Dr. Blake and she agrees that something needs to be done.

________________________________________________________________

The best thing to hit the internet in years - Juno SpeedBand!

Surf the web up to FIVE TIMES FASTER!

Only $14.95/ month - visit www.juno.com to sign up today!

Membership of this email support groups does not constitute membership in

the CHARGE Syndrome Foundation.

For information about the CHARGE Syndrome

Foundation or to become a member (and get the newsletter)

please contact marion@... or visit

the CHARGE Syndrome Foundation web page

at http://www.chargesyndrome.org

7th International

CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

Information will be available at our website

www.chargesyndrome.org or by calling 1-. In Canada, you may

contact CHARGE Syndrome Canada at 1- (families), visit

www.chargesyndrome.ca, or email info@.... Thank you!

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

--

December 23, 2003

Unfortunately, I have no suggestions--but I hope you find some answers

soon--you are in our thoughts and prayers.

, mom to timmy 8 ChARGE, keegan 5.5, liam 3, wife to pat

need advice immediately

> My son ph is 21 and has cHaRGE. He began vomiting on Thanksgiving

Day.

> We are now into day 27 of the vomiting, and he has lost 20 pounds. He is

now

> skeletal in appearance. I have had him to the doctor and the emergency

> department. Yet this boy has not been admitted to the hospital or checked

for

> anything other than labs. His liver function is normal, enzymes on

pancreas is

> normal, white cell count normal. These were done two weeks ago. He is

having

> bowel movements so there is no blockage, no fever, and everything is

pointing to

> his gallbladder, yet no one has bothered to do any tests for it. I have

> begged the doctor to admit him, yet he says his labs don't merit an

admittance. I

> have asked for a referral to another doctor and they are dragging their

feet

> on this. If I take him back to the emergency department they will just

call

> the doctor who is doing nothing. It will take weeks to get an appointment

with

> a doctor at Riley in Indianapolis. This child does not have weeks. He is

not

> even strong enough if it turns out to be his gallbladder to withstand the

> surgery to correct it. This child is going to die without some help. He

is

> starving to death. They won't even put in an IV feeding line because they

are

> afraid he will pull it out, he has some SIB. He has never bothered an IV

line,

> and he's had plenty. He is never left alone and always has had 24 hour

> supervision. I have every intention of camping at the hospital with him

and doing

> all of his care except what the nurses have to do. I can't seem to get

anyone

> off their butts and do something for this child. It's almost as if they

are

> just going to let him die. I am desperate. I need some advice as soon as

> possible. He can hold nothing down, we have been giving Phenergan

suppositories

> since this started. When he gets those he's so weak, he sleeps and then

won't

> take anything for nourishment. I am open to any suggestions. I am so

past mad

> at the medical community. This boy is dying and they don't really seem to

> care. Thanks.

> Crickmore Mom to ph () 21 year old cHaRGE

> I have emailed Dr. Blake and she agrees that something needs to be done.

>

December 23, 2003

Dear ,

i wanted to let you know i am thinking of you ...

i think you live in the states? - so i don't know if any of these thoughts

would be possible, can you go to your regular doctor and ask for a referral?

is there a patient advocate at your hospital you can contact? can you go to

the er at a different time of day so that you see someone else? go back to

the er and *refuse* to leave until you are satisfied that you have what you

need? i presume that the drs checked out other reasons for vomiting like ear

infections? can you turn up at the office of the dr you want to see and

refer ph yourself? i don't know what phenergan is for so this may be

unreasonable, but can you miss a dose and see if he will take a little

fluid? or is there another medication he could take instead? don't feel you

need to reply to these questions, just use or leave them!

You have already done so much ... i hope i can send you some strength to

carry on a little more so you can find that person that will help ph

feel better and get well, {{{{{{hugs}}}}}}

Jo

----- Original Message -----

> My son ph is 21 and has cHaRGE. He began vomiting on Thanksgiving

Day.

> We are now into day 27 of the vomiting, and he has lost 20 pounds. He is

now

> skeletal in appearance. I have had him to the doctor and the emergency

> department. Yet this boy has not been admitted to the hospital or checked

for

> anything other than labs

December 23, 2003

,

I am so sorry to hear what is happening with ph! I hope that Dr.

Blake can intervene on his behalf and make something happen soon. I

would call the hopsital and get the patient advocate to talk with you

right NOW. It seems incredible that they won't even put in an IV. It

seems criminal. Do you have any ability to change doctors? Possibly

during the next few days with Christmas holidays ph's doctor will

NOT be on call. Is there any chance you could talk with another doctor

at that time? Is your doctor the same as ph's? If not, could you

call your own doctor and implore them to do something? Can he tolerate

Pedialyte or water? What medicines if any is he on? Can you contact

LEGAL AID in the phone directory and have a legal advocate step in to

force the doctor and hospital to act?? Do we have any doctors or legal

advocates in Indiana here on this list who can help???

need advice immediately

My son ph is 21 and has cHaRGE. He began vomiting on Thanksgiving

Day.

We are now into day 27 of the vomiting, and he has lost 20 pounds. He

is now

skeletal in appearance. I have had him to the doctor and the emergency

department. Yet this boy has not been admitted to the hospital or

checked for

anything other than labs. His liver function is normal, enzymes on

pancreas is

normal, white cell count normal. These were done two weeks ago. He is

having

bowel movements so there is no blockage, no fever, and everything is

pointing to

his gallbladder, yet no one has bothered to do any tests for it. I have

begged the doctor to admit him, yet he says his labs don't merit an

admittance. I

have asked for a referral to another doctor and they are dragging their

feet

on this. If I take him back to the emergency department they will just

call

the doctor who is doing nothing. It will take weeks to get an

appointment with

a doctor at Riley in Indianapolis. This child does not have weeks. He

is not

even strong enough if it turns out to be his gallbladder to withstand

the

surgery to correct it. This child is going to die without some help.

He is

starving to death. They won't even put in an IV feeding line because

they are

afraid he will pull it out, he has some SIB. He has never bothered an

IV line,

and he's had plenty. He is never left alone and always has had 24 hour

supervision. I have every intention of camping at the hospital with him

and doing

all of his care except what the nurses have to do. I can't seem to get

anyone

off their butts and do something for this child. It's almost as if they

are

just going to let him die. I am desperate. I need some advice as soon

as

possible. He can hold nothing down, we have been giving Phenergan

suppositories

since this started. When he gets those he's so weak, he sleeps and then

won't

take anything for nourishment. I am open to any suggestions. I am so

past mad

at the medical community. This boy is dying and they don't really seem

to

care. Thanks.

Crickmore Mom to ph () 21 year old cHaRGE

I have emailed Dr. Blake and she agrees that something needs to be done.

December 23, 2003

: Instead of waitng for Riley If you r insurance accepts the

othe Hospitals Remember ST just opened a Childrens ospital on 82nd

street and also there is Methodist. GOOD LUCK If there is anything

Marilyn or I can do just call

need advice immediately

My son ph is 21 and has cHaRGE. He began vomiting on Thanksgiving Day.

We are now into day 27 of the vomiting, and he has lost 20 pounds. He is

now

skeletal in appearance. I have had him to the doctor and the emergency

department. Yet this boy has not been admitted to the hospital or checked

for

anything other than labs. His liver function is normal, enzymes on pancreas

is

normal, white cell count normal. These were done two weeks ago. He is

having

bowel movements so there is no blockage, no fever, and everything is

pointing to

his gallbladder, yet no one has bothered to do any tests for it. I have

begged the doctor to admit him, yet he says his labs don't merit an

admittance. I

have asked for a referral to another doctor and they are dragging their feet

on this. If I take him back to the emergency department they will just call

the doctor who is doing nothing. It will take weeks to get an appointment

with

a doctor at Riley in Indianapolis. This child does not have weeks. He is

not

even strong enough if it turns out to be his gallbladder to withstand the

surgery to correct it. This child is going to die without some help. He is

starving to death. They won't even put in an IV feeding line because they

are

afraid he will pull it out, he has some SIB. He has never bothered an IV

line,

and he's had plenty. He is never left alone and always has had 24 hour

supervision. I have every intention of camping at the hospital with him and

doing

all of his care except what the nurses have to do. I can't seem to get

anyone

off their butts and do something for this child. It's almost as if they are

just going to let him die. I am desperate. I need some advice as soon as

possible. He can hold nothing down, we have been giving Phenergan

suppositories

since this started. When he gets those he's so weak, he sleeps and then

won't

take anything for nourishment. I am open to any suggestions. I am so past

mad

at the medical community. This boy is dying and they don't really seem to

care. Thanks.

Crickmore Mom to ph () 21 year old cHaRGE

I have emailed Dr. Blake and she agrees that something needs to be done.

December 23, 2003

,

I have a friend whose child with CHARGE has has numerous bowel obstructions.

Her experience has been that they go in and out of the ER for a couple

weeks, the child is near death, they do surgery in the nick of time, and

fortunately she has pulled through each time. With all of this she has

gained a lot of experience in early symptoms, and how to handle all the

doctors when they tell her nothing can be done. I have called to tell her

your situation and have forwarded her your e-mail. Hopefully you will be

hearing from her. Her name is Lori.

Kim

> My son ph is 21 and has cHaRGE. He began vomiting on Thanksgiving Day.

> We are now into day 27 of the vomiting, and he has lost 20 pounds. He is now

> skeletal in appearance. I have had him to the doctor and the emergency

> department. Yet this boy has not been admitted to the hospital or checked for

> anything other than labs. His liver function is normal, enzymes on pancreas

> is

> normal, white cell count normal. These were done two weeks ago. He is having

> bowel movements so there is no blockage, no fever, and everything is pointing

> to

> his gallbladder, yet no one has bothered to do any tests for it. I have

> begged the doctor to admit him, yet he says his labs don't merit an

> admittance. I

> have asked for a referral to another doctor and they are dragging their feet

> on this. If I take him back to the emergency department they will just call

> the doctor who is doing nothing. It will take weeks to get an appointment

> with

> a doctor at Riley in Indianapolis. This child does not have weeks. He is not

> even strong enough if it turns out to be his gallbladder to withstand the

> surgery to correct it. This child is going to die without some help. He is

> starving to death. They won't even put in an IV feeding line because they are

> afraid he will pull it out, he has some SIB. He has never bothered an IV

> line,

> and he's had plenty. He is never left alone and always has had 24 hour

> supervision. I have every intention of camping at the hospital with him and

> doing

> all of his care except what the nurses have to do. I can't seem to get anyone

> off their butts and do something for this child. It's almost as if they are

> just going to let him die. I am desperate. I need some advice as soon as

> possible. He can hold nothing down, we have been giving Phenergan

> suppositories

> since this started. When he gets those he's so weak, he sleeps and then won't

> take anything for nourishment. I am open to any suggestions. I am so past

> mad

> at the medical community. This boy is dying and they don't really seem to

> care. Thanks.

> Crickmore Mom to ph () 21 year old cHaRGE

> I have emailed Dr. Blake and she agrees that something needs to be done.

>

December 24, 2003

There is obviously something very wrong if he is throwing up for 27 days and

has lost 20 lbs. First, why aren't they giving him medicine to stop the

throwing up. Second, regardless of bloodwork, if he can't hold anything

down, he needs an IV for fluids. Third, he needs to be in the hospital to

run every test there is known to figure out what is wrong with him. Are you

near or in a big city? If you aren't in a big city hospital and your son

has something they have never seen, chances are they won't know what to do.

I would get back to the hospital and demand to be admitted and demand tests

and fluids for your son and NOT leave until he is admitted even if you need

to call in a lawyer to help you. I don't get this, how can they keep

sending him home. If they are afraid of SIBS then they need to provide an

aide for him 24/7 to stay with him. This is outrangeous! If the hospital

can't handle him they should find somewhere who can and transfer him, even

if they have to transport him by helicopter!

Debbie Matasker

..

need advice immediately

Message-ID:

My son ph is 21 and has cHaRGE. He began vomiting on Thanksgiving

Day.

We are now into day 27 of the vomiting, and he has lost 20 pounds. He is

now

skeletal in appearance. I have had him to the doctor and the emergency

department. Yet this boy has not been admitted to the hospital or checked

for

anything other than labs. His liver function is normal, enzymes on

pancreas is

normal, white cell count normal. These were done two weeks ago. He is

having

bowel movements so there is no blockage, no fever, and everything is

pointing to

his gallbladder, yet no one has bothered to do any tests for it. I have

begged the doctor to admit him, yet he says his labs don't merit an

admittance. I

have asked for a referral to another doctor and they are dragging their

feet

on this. If I take him back to the emergency department they will just

call

the doctor who is doing nothing. It will take weeks to get an

appointment with

a doctor at Riley in Indianapolis. This child does not have weeks. He

is not

even strong enough if it turns out to be his gallbladder to withstand the

surgery to correct it. This child is going to die without some help. He

is

starving to death. They won't even put in an IV feeding line because

they are

afraid he will pull it out, he has some SIB. He has never bothered an IV

line,

and he's had plenty. He is never left alone and always has had 24 hour

supervision. I have every intention of camping at the hospital with him

and doing

all of his care except what the nurses have to do. I can't seem to get

anyone

off their butts and do something for this child. It's almost as if they

are

just going to let him die. I am desperate. I need some advice as soon

as

possible. He can hold nothing down, we have been giving Phenergan

suppositories

since this started. When he gets those he's so weak, he sleeps and then

won't

take anything for nourishment. I am open to any suggestions. I am so

past mad

at the medical community. This boy is dying and they don't really seem

to

care. Thanks.

Crickmore Mom to ph () 21 year old cHaRGE

I have emailed Dr. Blake and she agrees that something needs to be done.

________________________________________________________________

The best thing to hit the internet in years - Juno SpeedBand!

Surf the web up to FIVE TIMES FASTER!

Only $14.95/ month - visit www.juno.com to sign up today!

Membership of this email support groups does not constitute membership in

the CHARGE Syndrome Foundation.

For information about the CHARGE Syndrome

Foundation or to become a member (and get the newsletter)

please contact marion@... or visit

the CHARGE Syndrome Foundation web page

at http://www.chargesyndrome.org

7th International

CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

Information will be available at our website

www.chargesyndrome.org or by calling 1-. In Canada, you may

contact CHARGE Syndrome Canada at 1- (families), visit

www.chargesyndrome.ca, or email info@.... Thank you!

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

--

December 24, 2003

Oh, can you bring him to Riley (is this a hospital) to there ER? If you go

in through the ER then you will get to see one of there doctors without

waiting.

December 24, 2003

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December 27, 2003

I have come home for a few minutes. ph finally was admitted to the

hospital on the 23rd after I demanded a referral to the surgeon that did 's

hernia surgery when he was 5. was given an ultrasound and gallbladder

study

and endoscope. It was found that he has a hiatal hernia, and his gallbladder

is only emptying at a rate of 14% when it should be at least 30%. had

surgery this morning and they removed his gallbladder. His regular doctor is

mad that I went over his head. He was only doing what we had been doing for

the last month. is feeling better somewhat. He did get mad tonight that

there was no food on his tray tonight, only clear liquids. He has a lot of

irritation of his esophagus near his stomach. We will work on that next. He

will

be in the hospital for a while. The nurses are fussing over him, they think

he's just so cute. I feel so much better. We have a long road to travel yet

in his recovery, but we have at least taken care of one problem. I want to

truly thank everyone for their support. It means the world to me. I am sitting

here writing this and crying my eyes out. I have not been very good at

stopping the crying lately. I am leaving for the hospital again. He is in Ball

Memorial Hospital Muncie, Indiana. Our phone number to our room is

(I think) You can call the hospital at and ask for room 9126.

I would love to hear from you. The phones are shut off at 10pm (EST) and

turned back on at 8am (EST). The address is 2401 W. University Av Muncie, IN

47304. Again, thank all of you from the bottom of my heart. Our whole family

is holding off Christmas until comes home. We are all leaving up our

decorations and will really have something to celebrate. I hate that I had to

get

(excuse this) pissy, but I was fighting for my son's very life. I will check

my email again in a few days. I am staying in 's room with him. They

brought me in a cot. I always camp with him. My brother offered to stay with

him so I could come home for a short while. Thank you all. I will keep you

posted on his recovery. If anyone calls the hospital and wants to know about

him ask about ph Bolinger and the code word is " mom " so they will tell you

his condition. Love you all. You are the best. Will someone let Dr. Blake

know how he is doing? She has been so good to help me. Will update later.

Crickmore Mom to ph 21 year old cHaRGE

December 28, 2003

What a relief! I didn't post a reply to your first plea for help -- I didn't

know what to suggest. But I have worried and worried about ph and wondered

how things have come along. It was frightening when we didn't hear from you.

I'm so pleased that you found someone to help and are on the way to recovery.

Hugs across the miles to you and ph--

Michele W

mom to Aubrie (6 yrs) CHaRgE and (12 yrs)

Re: need advice immediately

I have come home for a few minutes. ph finally was admitted to the

hospital on the 23rd after I demanded a referral to the surgeon that did

's

hernia surgery when he was 5. was given an ultrasound and gallbladder

study

and endoscope. It was found that he has a hiatal hernia, and his gallbladder

is only emptying at a rate of 14% when it should be at least 30%. had

surgery this morning and they removed his gallbladder. His regular doctor is

mad that I went over his head. He was only doing what we had been doing for

the last month. is feeling better somewhat. He did get mad tonight that

there was no food on his tray tonight, only clear liquids. He has a lot of

irritation of his esophagus near his stomach. We will work on that next. He

will

be in the hospital for a while. The nurses are fussing over him, they think

he's just so cute. I feel so much better. We have a long road to travel yet

in his recovery, but we have at least taken care of one problem. I want to

truly thank everyone for their support. It means the world to me. I am

sitting

here writing this and crying my eyes out. I have not been very good at

stopping the crying lately. I am leaving for the hospital again. He is in

Ball