new member

[Guest guest]

>

Mark dad to wrote:

> When she understands that she has to eat

> to maintain growth then she will not need her Gtube. The whole concept of no

> appetite is hard to grasp. I for one cannot imagine not wanting to eat!!!

>

>

>

>

I'm not sure what a Gtube is, but I know Jerry doesn't have one, and from the

sounds of it, I can be thankful for that at least.

Robin

[Guest guest]

,

We live in a small town in southern central Virginia. (I can't say where,

although I'm sure everyone on this list is legit, it's still usenet and these

posts are available to every crazy on the planet..lol)

She goes to a hospital in Richmond. CHKD would be a 2 to 3 hour drive for her

and she has to go twice a week so with work and all that wouldn't be very

feasible.

I'm steadily forwarding posts to my mother (who prints them for my sister) so

I'm sure she will ask if he can get a specialist at CHKD. )

PS

How old is your child? Just out of curiousity. I keep trying to compare Jerry to

other kids on the list to see how his size averages out.

Thanks,

Robin

[Guest guest]

I, too, had Max taken away from me - but only for a day. He was in the

hospital for a failure to thrive workup and the covering pediatrician

decided that I was the cause of Max's not eating and he arranged for the

nurses to do all of his feedings. Being the naive person that I was, I did

not realize what was going on, but when I did, I was like " hell on wheels "

until I was able to reach our own pediatrician and make things right again.

Here it is, 12 years later, and I still remember it like it was yesterday.

I understand in this day and age that we are all much more aware of neglect

and abuse of children; however, some people are so quick to get on the

bandwagon that they don't always stop and think about what they are doing.

Especially when there really are things like RSS that make our children look

tiny, underfed, and weak. I just know that I have never, NEVER felt so

alone and helpless as when that nurse came and took Max away.

Please know that there are many of us who understand what you are going

through and what you and your family have been through. Believe me, this is

the most supportive group of people I have ever " met. " It is for things

like this that the internet is a godsend. For what we are going through

with Max now, it is what gets me through the day. More on that later....

Jodi

[Guest guest]

Thank you so much, I have already found that Cheyenne (20 months - 13lbs. 8

oz) has a lot of problems hitting her head too. With the Department of

Family and Children Services constantly watching our every move (they come by

twice a week to check on everything), it makes us react unnaturally to a

certain degree, and I don't want her to be overly concerned about her

condition. I want her to live as normal a life as possible, and be as normal

a child as possible. She has an amazing amount of strong will and strong

personality, already. Hopefully, that will help her throughout her tiny

life.

Cheyenne was born with cataracts, is this something that goes along with RSS?

She was full term, she weighed 4lbs. 5 oz. when she was born. I was in the

room with her Mom and dad while she was born. She has an older half-brother

4 years old Dakota, and a younger brother Hunter 1 month old.

I've made a notebook of all the information that I can find on RSS, we kept

it with us to show doctors, etc. The last time DFACS came by, they took it.

It really 'ticked me off'. My daughter-in-law is so intimidated by them,

because of what they have done, she won't say anything to them, out of fear

for what they may do next. The caseworker even took all three children's

birth certificates, and won't return them, said they needed them. I am so

frustrated I don't know what to do, or whom to go to. Please, somebody, tell

me what to do.

Neva in Georgia

Nanna to Dakota 7, Cheyenne 20 months RSS, and Hunter 1 month.

[Guest guest]

Dear Neva,

I'm terribly sorry for your family. I cannot even believe what I just

read!! Please tell me your daughter has switched doctors & contacted a

lawyer!! Obviously this doctor did not research causes of failure to

thrive! I'm no attorney but it sure seems negligent to me. I definately

would contact MAGIC to see what they have to say about it. I have also

heard that Little People of America is a very supportive group!!

( 18 mons, 14 lbs & starts GH on Friday!!)

[Guest guest]

Neva,

If I were you I would contact a lawyer and see if you can sew child

protective services, and possibly the Dr. for not trying to find a

reason for what he did, and just doing it. Also sew for return of

your belongings. They do not have the right to take the birth

certificates!!!!! They also should not be coming to the house every

two weeks. I get soooo angry about the way they do things!!! They

lets kids stay with parents that beat the living tar out of them and

pick on good parents with special needs kids!!!

Please call a lawyer and ask what you can do. Your poor little

daughter-in-law is probably scared to death they will not only take

the one child again, but all her children.

The lawyer can get the case file closed! A letter from the Doctor

that diagnosed should be added to the file in the mean time!!!

Good luck and God Bless,

Carmen, Mom to Storm, 5, RSS, 26#, 37 " tall

[Guest guest]

Neva,

One other idea I have! Call the News and tell them your story!!!

I think it would be great and I think they would listen!

Sorry, Social Work is my field of study and I get so irate when

ignorant people screw up a good thing!

Carmen

[Guest guest]

Neva,

I can't believe the treatment your family has received!! It's crazy to

think harassing a family that is doing the best it can to love and protect

its children can be treated in such a manner. RSS IS A MEDICAL CONDITION,

HELLO!!! My heart goes out to your family.

Danna

Re: New Member

>

> Thanks for the support. DFACS had Cheyenne for 4 months, during

> which time I was not allowed to have any contact with her.... I'm just her

> grandmother. Her father (my son) and her mother were allowed one 30

minute

> visit at the DFACS office each week. My son and his wife were devastated

by

> this, when they came to get Cheyenne, the caseworker brought a a deputy

> sheriff with her, because my son questioned them, he was arrested, for

> disorderly conduct.

>

> So not only did we have my granddaughter snatched away, my son thrown in

> jail, my daughter-in-law was also pregnant at the time, and went into

> premature labor. Instead of being able to go to my son, I had to rush her

to

> the hospital, call my other son to go bail his brother out of jail. Then

I

> had to come up with the money to bail him out of jail, and the money to

hire

> an attorney to help him. (My son is the only one working in his family,

and

> is on a very limited budget). It has been a most expensive year.

>

> Then after I harassed DFACS, I got in touch with the Supervisor, who asked

me

> why Cheyenne hadn't been placed with me, and I didn't know. So then we

found

> out in order for her to be placed with my husband and me, we had to go

> through MAPPS training and become Parents - 10 weeks long. They

did

> however, place her with us while we were going through the training. This

> has been the most screwed up mess I have ever lived through.

>

> The file is still open, they are going to continue to watch my son and

> daughter in law for 3 months. Like I said, they come to there house twice

a

> week to 'inspect it', and council them.

>

> Neva in Georgia

>

>

>

>

[Guest guest]

Welcome Dawn,

We're glad to hear from you. I have a 4 year-old also. We probably have

lots in common

Danna,

Character cannot be developed in ease and quiet. Only through the

experience of trial and suffering can the soul be strengthened , ambition

inspired and success achieved.

Helen Killer

Re: New member

>

> Hello Group,

>

> I'm a new list member. I have a 4 year old son with RSS. I always tell

people

> Yes, he's little but he's mighty. And usually inform the rude one's with

yes

> he is little but he does'nt know that. I had a man shout across a

restaurant

> one day (literally) Hey lady was he born premature or something. I gave

him

> one of my classic dont make me hurt you looks and said with a resounding

> voice NOPE and we walked out the door. Crazy the extremes some people will

go

> to sometimes. I took every-oppurtunity to fill my friends & family in on

RSS.

> But found that all of them fell madly in love with him.He is definitly

not

> lacking in the handsome department. We started pre-school a week ago and

> there is a definite difference. I figure as long as I can keep him

un-aware

> that he is any different we will be OK. The realist in me knows that wont

> always be the case, but for now I want him to enjoy himself. His eyes were

> just as full of wonder on the first day of school as the big kids..Warmed

my

> heart..

>

> One day at a time.....

> Dawn & Foxall

> Unseen to the naked eye the crown of jewels he wears on his head

>

>

>

>

[Guest guest]

I am a grandmother of an RSS child also. I've been on this list since my

grandson was 15 months old (Thanks to wonderful Jodi). Neva, my daughter

was also turned into DCFS by, of all people, Trey's physical therapist!!

was investigated, humiliated, and it literally put our family through

HECK! Thank God almighty all of Trey's doctors - 5 at that time - backed my

daughter up 100%. They were wonderful and made the PT look like a fool.

Needless to say, she is no longer involved with Trey's therapy in any way.

Hang in there, the terrific people on this list told me it would get better

and they were right. Best regards to all, , Grandmother of Trey!!

>

>Reply-To: RSS-Supportegroups

>To: RSS-Supportegroups

>Subject: Re: New Member

>Date: Mon, 11 Sep 2000 18:54:38 -0400

>

>Oh Neva how awful for you and your family. It is just disgraceful that

>doctors

>are not up to date on conditions like RSS and make the decision to call in

>children's aid.

>

>The only thing I could suggest is you check out the web site at the magic

>foundation. www.magicfoundation.com Click onto the area that describes the

>syndromes and find RSS. Then I would print out the page. It is a good list

>of

>symptoms, causes (which are unknown) and it nicely summarizes with " parents

>have

>done NOTHING to cause it. " Then make sure the parents of your grandchild

>carry

>this with them at all times. Whenever you have to go to a doctor or clinic

>that

>is not familiar with your grandchild you can show them the sheet.

>

>Hope that helps.

>

>Debby

>

>munchnt@... wrote:

>

> >

> > I have a few questions for the list, since I'm a new member I don't

>really

> > know if this has been discussed before.

> >

> > My granddaughter has been diagnosed with RSS. She is now 20 months old.

> > Before she was diagnosed her pediatrician reported her parents to DFCS

>for

> > child neglect, (they said she wasn't feeding her properly, etc.), they

>took

> > her from them, and we've only had her back now for about 6 months. No

>more

> > problems, yet.

> >

> > I was just wondering if anyone else has had this type of experience, and

>what

> > can be done about it. I find it hard to believe that this kind of thing

>goes

> > on.

> >

> > Neva in Georgia

>

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[Guest guest]

Neva,

I have a suggestion for your daughter and granddaughter. THere is

a doctor in New York (Dr. Madeline Harbison) who works with many RSS

patients. She is a very aggressive doctor and although many of us

complain about her attitude toward us as parents, she is an amazing

advocate for kids with RSS. I don't know if you would be able to

afford going to see her, but I think she might be able to help your

daughter gain some confidnece when it comes to the social services

people. If Dr. Harbison agrees witht the RSS diagnosis, she will be

able to lend credit to the diagnosis and also back you up when it

comes to Social services. SHe is also very pushy and your daughter

may feel better having the Doctor in her corner.

Pattie

> Thanks for letting me know about the RSSkids website. It is great,

also to

> have somewhere to tell these people where to look for information.

Maybe

> then they'll give me my information I've searched for back.

>

> Sorry, for being so nasty.

>

> Neva

[Guest guest]

Danna,

We're not too far apart we live close to Chatsworth Georgia, I have a sister

that lives in Ellijay and one that lives in Blue Ridge. I'm taking Cheyenne

to the pediatrician tomorrow, I hope she's gained some weight.

Neva

[Guest guest]

Neva,

This is so AWSOME!!! We used to live in Fannin County. I worked for

Levi Strauss for 7 year in Blue Ridge. I have sister-in-laws that live in

Ellijay and Blue Ridge. We moved to Hiawassee to be closer to my family

when was around 5 months old. I'd love to meet you and your family

some time.

I hope Cheyenne has gained weight too, is this THE pediatrician? Where

is she/he located at? I'm thinking about seeing a pediatrician, we take

to our family MD. We take him to Chattanooga, TN for his major stuff.

He is over all of his surgeries (6 in all for different things) and now we

can focus on size and general health.

Keep me posted on how the visit goes.

Danna mom to , Carol and .

Re: New Member

>

> Danna,

>

> We're not too far apart we live close to Chatsworth Georgia, I have a

sister

> that lives in Ellijay and one that lives in Blue Ridge. I'm taking

Cheyenne

> to the pediatrician tomorrow, I hope she's gained some weight.

>

> Neva

>

>

>

>

[Guest guest]

,

As the mom of a boy who is now 12 and has RSS, I can understand what you are

going through. Max also has learning disabilities, mostly in the auditory

processing area.

Although he has been " in the system " since he was 3, Max's learning issues

have become more complex to the point where we had to put him in a private

school. He was being teased by his classmates because he was pulled out of

class so often and was a bit disorganized and could not keep up. Now he is

as happy as can be and feels great about himself.

That being said, I also want to let you know about the possibility of early

puberty for your daughter. Max has this and it is being treated medically

for this. There are two medications you can use. I can go into more detail

if you want, so just let me know.

I hope this helps, just to know that someone, actually lots of people, know

what you are going through. Welcome to this list. The people are great.

Jodi

[Guest guest]

Hi

You will probably get a ton of info--everyone is so helpful here.

First--welcome. You've come to the right place. Where do you live?

I want to just address one part of your email...others will help I'm sure with

other areas. My 8 year old son, Adam, has had school problems as well. I believe

it is a maturity thing. I teach at the same school and see him throughout the

day (I go in for a half hour once a day this year to help the teacher with a lot

of my special ed. kids in the room--so I have a real chance to observe). Anyway,

I had the central auditory test done in Sept. It seems to me that he always

doesn't " fully understand " what is said to him. His hearing was fine, and so was

the central auditory. But I didn't stop there. I had a speech and language

assessment done. He tested 2 years above for speaking (oral language--no

surprise to any one who knows Adam) but on one small subtest the pathologist was

able to pick up that he doesn't seem to understand some vocabulary (especially

nouns). She had a whole list of recommendations for the teacher to aid Adam.

There is no " fix " . Hopefully as he matures he will just learn to attend much

harder than other kids must and ask for clarification. But right now he is a

silly boy who wants to horse around all day and not work!! It's so frustrating!!

Basically Adam will do really well when given a textbook to read and comprehend

but if he's given a lecture...he won't get it!! Interesting!!

So if you want that list of recommendations to get added to your child's 504 (we

call them IEP's here in Canada) I can type it up and email it to you.

Again, welcome and ask any question you may have!!!

Debby

[Guest guest]

Hello and welcome to the group! It seems you fit into a pattern that some of

us share - the initial onset of hives following some sort of infection (I

assume that's why you took the dicloxycillin). Have you found that you don't

get sick when you are hiving; colds, flu, that sort of thing? It seems that

some of us are triggered by infection, in some cases by " occult " or hidden

infection. Has the bacterial problem in the colon been fully taken care of,

confirmed with testing? If it hasn't, this may be why you still have hives.

I think what is happening in some cases is that the immune system goes into

overdrive to fight an infection and forgets to back off, resulting in

attacking the body (hives). The reason prednisone works is that it

suppresses the immune system. However, there are just way too many side

effects of prednisone to warrant its use except in extreme cases, such as

anaphylaxis (allergic shock). Besides packing around extra, unhealthy

weight, prednisone causes weakening of bone and teeth, which can result in

osteoporosis and tooth breakage or loss. Pred also thins the skin, making it

easier to damage with scratching and making it harder for your body to heal

properly. The pred can also cause Cushing's Syndrome (excessive adrenal

hormones - that's one of the reasons those of us on pred get the " moon "

face). Sudden withdrawal from pred can result in 's disease. So, I

guess what I'm trying to say is, although prednisone is wonderful in some

cases for controlling our symptoms, the trade-off is something that really

has to be considered. I know - been there, done that.

Regarding the Epstein-Barr: I also had that a few years ago, resulting in

Chronic Fatigue. Wheat-grass juice helped a lot, and was in fact prescribed

by my allergist/immunologist. You can get it at many health-food stores and

juice bars.

Hope some of this helps. Hang in there!

Jackie

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[Guest guest]

Carmen

I seem to be budding in on another conversation...who is ? Is it the

Archie's ??

If it is, will be disappointed because Adam has already spoken for her!!!

LOL

Debby

Rawley wrote:

> Carmen,

>

> my son, , is 5 y.o. (June 30) and 26#, 39 inches tall - much like

> Storm. and is " going to marry today " ! LOL!

>

> Sue R. :-)

>

> >>Storm is 38 " tall and 27lbs. He is the smalles in his class and seems

> >>smaller than a lot of the kids on this list that are close to his age and

> >>even younger.<<

>

> _________________________________________________________________________

> Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com.

>

> Share information about yourself, create your own public profile at

> http://profiles.msn.com.

>

[Guest guest]

Dear Ann

Hello and welcome to the group. Have you looked at the ICUS website and

Myra's newbie notes, etc? You will find that a lot of people are taking a

combination of antihistamines, which target both H1 and H2 receptors, and

this seems to work better than just taking a single thing for a lot of us.

I live in the UK and take loratidine 10 mg twice a day and cemetidine 400 mg

twice a day. I am just about to change the loratidine to 10mg cetirizine

per day, after reading postings from Myra.

Once you have had urticaria for more than six weeks, it is considered to be

" chronic " , and usually allergies are not the cause.

The cause is unfortunately a very elusive thing for most of us, and coming

around to accepting that is one of the hardest things. On the other hand,

some people have tracked down their cause, so there's hope for us all.

Looking forward to hearing more from you, Carol

New member

>

> Hi everyone,

>

> I have been recieving these emails from this group for the last week or so

> and although its terrible that so many people suffer from this, I'm glad

> to know others can relate to my problem. I am almost 22 and I have had

> these hives for about 2 months now. I have been to 2 different doctors at

> my on campus health center, but they can't tell me anything. I can not

> think of anything new in my life that could be causing this.I have never

> been allergic to anything or had hives before. I have been on 3 types of

> medicine, none of which work very well.They are different types of

> Allegra, does any one else take these?? I don't know why this is happening

> to any of us, but thanks for the support and advice.

>

> Ann

>

>

>

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

> If you do wish to unsubscribe then you can click on the following link:

> <mailto:urticaria-unsubscribeegroups>

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

>

> This list is in the service of those who suffer from Chronic Urticaria

(hives). We strive to support and lift each other as a worldwide

cyber-family.

>

> We share whatever needs to be shared to help one another in our struggle

with Chronic Urticria.

>

> Any posting that is off the main topic of Chronic Urticaria, we post with

a prefix of NCU -. This is done out of respect for those who do not wish to

read such postings.

>

[Guest guest]

Hi, my name is Cheryl and I have a son named who will be 3 on

Dec. 1. He has not been diagnosed with RSS, but after discovering

this group and the Magic site, I know in my heart. We just had a bone

age done, and are waiting on results. I just wanted to introduce

myself, and let you know that I am getting to know a little about

many of you from the messages here. I would like to hear from anyone

in Canada to find out who the " good " endos are, and anything else I

might need to know that is different in Canada than in the US. Thanks.

[Guest guest]

Hi Cheryl

Sault Ste Marie is a nice town. On my honeymoon, my husband (now ex) and I

camped at Pancake

Bay. We ended up in " the Soo " one day when it rained. We kicked around in a

mall.

Anyway, my son was 5-3 when he was born. I smoked when I was pregnant but had

also smoked

with my daughter and she was 7-11. But with Adam I had some bleeding at 32 weeks

of

pregnancy and was hospitalized for a week. During that week the ultrasound

showed Adam to be

5 lbs and 6 weeks later when he was born, he hadn't grown much since that time.

The doctors figured it was a combination of the smoking and a possible tear or

something in

the placenta that restricted food getting to him.

The doctors felt he was initially growing and " catching up " fine until around 9

months when

his weight gain seemed to plateau. By a year he was a skeleton. So began the

rounds to see

why he wasn't growing.

I tell you this because, in the end, he was given the RSS diagnosis. No one can

prove for

sure the kids have it. It's basically one of elimination of any other problems

coupled with

some visual characteristics.

What doctor were you supposed to see at Sick Kids. Dr. Ehrlick by any chance??

He was the

one who told me Adam had RSS but he couldn't do anything for us and I wasn't to

come back.

(that was in and around 1996 or 1997). He has since retired and the head of

endo. now is Dr.

Daneman, who has examined Adam, has agreed with the RSS diagnosis and is

starting the

process to get GH.

Unfortunately this process is proving to be very slow. I am teacher and have a

good

insurance/health care plan with the school. He has been " applying " for approval

from my

insurance for--oh 2 months or so now (but then again I don't know for

sure--maybe he hasn't

even started the paperwork yet all I know is when I call, his assistant says

they are

working on it and won't say anything else).

Dr. Daneman did assure me that if my insurance will not cover the growth hormone

treatments

he can still get it, from the drug company, without my paying. He says that the

company

needs the " stats " of GH working for RSS kids so they can widen their base of

approved

treatment options through OHIP.

I know it's not easy to get down to Toronto from where you are. And with the

winter coming

it's even more difficult to think of. But if you decide you would like to try

again and see

what the doc's at sick kids have to say...just let me know.

You know from experience that even if you were to get a referral tomorrow, it

would take 4-6

months for you to get an appointment anyway. So you'd be looking at the spring

anyhow

(better driving weather).

If you want, keep it in mind that I am out here and I can always help out

(recommend hotels,

how to drive down there, a free meal at my place etc.) I live in Scarborough

(which is a

suburb of downtown Toronto--it takes me about 1/2 hour to drive to sick kids)

but my house

is only 5 minutes off the 401 (which is the eventual highway you would end up on

to get into

Toronto anyway).

Give it some thought. I am a firm believer (after many mistakes!!) of getting

second

opinions. That way, either you get things confirmed or you have someone else's

opinion on

options.

Please write back and let me know how things are and I'm interested in which

doctor you were

supposed to see at Sick Kids.

Ps I would strongly recommend Dr. Daneman (over Dr. Ehrlick) as he was very

straight forward

and honest with us. He seemed to know what he was talking about and had a good

" bed side

manner " . I also have a endo. pediatric specialist that sees Adam for the

" regular " things.

She's excellent too and is involved in on going research through sick kids but

has her own

" regular " practice. But you wouldn't want to get into having to drive down here

every time

you needed to see the doctor. Although, if you'd like, I could call her and ask

her if she

could recommend a good doctor comparable to her credentials up in the " soo " . She

also has a

daughter with a growth disorder, so she is wonderful and caring.

Let me know.

Thanks

Debby

kevinandcheryl.vanderheyden@... wrote:

> Hi Debby,

>

> I think I am figuring out how to use this message board thing!

> Anyway, we live near Sault Ste Marie in Ontario. I am starting to

> think I may have over reacted to right away think that my son may have

> RSS. He has lots of the characteristics, but there are lots he

> doesn't have too. He was 8lbs at birth and grew well for the first

> few months. Aside from not growing and not wanting to eat, he is too

> healthy. How do they actually diagnose RSS, since the cause isn't

> understood and symptoms vary so much? What is involved in getting

> approved for GHt? Our pediatrician mentioned getting Gh pretty

> casually 1.5 years ago and sent us to Sick kids, but our appointment

> gat cancelled and I never got around to going back. I guess I didn't

> realize we might be dealing with something serious. Oh well, there's

> still lots of time.

>

> Cheryl

>

> >

> > > Hi, my name is Cheryl and I have a son named who will be 3

> on

> > > Dec. 1. He has not been diagnosed with RSS, but after discovering

> > > this group and the Magic site, I know in my heart. We just had a

> bone

> > > age done, and are waiting on results. I just wanted to introduce

> > > myself, and let you know that I am getting to know a little about

> > > many of you from the messages here. I would like to hear from

> anyone

> > > in Canada to find out who the " good " endos are, and anything else

> I

> > > might need to know that is different in Canada than in the US.

> Thanks.

> > >

>

[Guest guest]

Cheryl -

These may be repetitive questions (I haven't done email for a couple days), but

has your son been checked for allergies, for malabsorption, for shoot, I can't

remember the name but chronic inflammation of the bowels, etc. In our rounds of

GI and Endos, I have met several children similar to your son - unlike most RSS

kids who are born small and still don't grow, these children were born normal or

above-average, and then around 3-4 months, their weight plummets, and then

several months after that, their height slows (height slows after weight stops

naturally). From my memory, one child ended up being allergic to all milk

protein ( meaning any dairy casings - its a tough one because so many foods have

milk casings in them). Another child went through a lot of studies before

finding out that she had the one I can't remember - it's a chronic inflamation

and she now takes medicine every day (and will take forever). The third child

has some type of malabsorption.

Anyways. Just wondering if you have already had all these tests?

Salem

[Guest guest]

Hi Cheryl

It is scary what happened at Sick Kids but I keep telling myself that it was on

the same ward with the

same nurses!! The mind needs to play games to survive!

The first girl (I believe she was 9 or 10) had leg pain. The doctors admitted

her and put her on morphine

The doctor's orders were to have her hooked up to a machine to monitor her

vitals incase she reacted to

the pain killers. The monitor was on when the mom went to sleep (she stayed with

her daughter) but with

the nurse shift change, a different nurse turned the machine off because it was

" noisy " and when the

mother awoke in the morning her daughter was dead.

So during the inquest, the nurses said the monitor had been on the whole

time--it malfunctioned. When they

went to examine the machine it had been mysteriously " fixed " . It took some time,

but the fact that the

doctor's orders had not been written onto the charts (they were logged on a

computer) and the nurses

failed to check the computer for information--lead to her death. It was

determined the hospital definitely

tried to cover up their blame and hence, the death was not deemed accidental but

instead homicide. What

happens now, hasn't been decided.

About a year or so after that, a young black girl (possibly the same age) had

routine surgery (I forget

for what) and she had sickle cell anemia. No one monitored her properly given

that she had this disease

and complications arose from the surgery while she was on the ward recuperating

and she died (the same

floor).

So again, I just say to myself (because I have to rely on Sick Kids for Adam's

care) 'well that's only for

kids who are hospitalized there'. But I tell you, if my kids ever were--I

wouldn't sleep or leave their

side and I'd be second guessing everyone!!!

It is an awful thing.

Debby

and Cheryl Vanderheyden wrote:

> Hey, I'm really happy to hear your wonderful news today! I just want to

clarify that McMaster is in

> Hamilton, not London, but I think it is London they want to send us to. You

have scared me away from

> Sick Kids - What happened to those kids that died? Anyway, I have to go to

bed. I keep staying up

> late to play on my computer, and the tiredness is catching up with me!

>

> Cheryl

>

> Debra Baillargeon wrote:

>

> > Hi Cheryl

> > I know what you mean about sick kids and their cancellations!! I had an

appointment for Adam to

> > have a sleep study last December. That day I went crazy, organized his

overnight bag, mine, and my

> > daughter's. Arranged for my daughter to stay at my parents and get to school

the next day. Which

> > meant making next day's lunch in advance. Then, I had to organize my plans

for the supply teacher

> > because I knew the " morning after " would be wicked and I wouldn't be able to

go into work.

> >

> > All that said, I dropped off Colette at my mom's (with dinner for her) then

Adam and I came home.

> > We didn't have to be at the hospital until close to bed time, so we had

dinner (bought--so I had

> > time for everything) and settled in for the wait. Suddenly, I get a

call--the tech. was sick and

> > they had to cancel us!! Literally within an hour of our leaving home. They

were dam lucky I hadn't

> > decided to go out for dinner and then straight down town or they'd have had

one mean, angry mother

> > on their hands!!

> >

> > Well talk about throwing everything in reverse fast. Called the daughter

back home, got Adam down

> > off the ceiling (he'd packed every stuff animal he owns 8 times over) and

unpacked all the bags,

> > canceled the supply who was to take my class the next day etc. I was major

MAJOR peeved that

> > night!!!

> >

> > But we were re scheduled for January 4th 2000. I had to laugh-- Adam is

famous down there now

> > because he was the first kid to " test " their computer Y2K business--the

first patient of the new

> > year (in the sleep lab anyway).

> >

> > Well, I'm trying to think where McMaster's University is. I think that's

London--which is probably

> > where you are planning to go. I hear they are 2nd best in the areas of

treating children. It's so

> > frustrating when we go to these arrangements and then get canceled.

Especially for you doing all

> > that distance driving.

> >

> > However, at least when you do come down here, you get to stay with

relatives. And so you know the

> > area better.

> >

> > If you don't like what you hear in London (I really think it is McMaster's

you'll go to) be sure to

> > keep in mind a second opinion at Sick Kids. Their bed side manner in regards

to treating us parents

> > is not the best, but they do seem to know what they are doing for kids (with

the exception of that

> > ward where two kids have died--was it ward 5?? Did you hear about that up

there??) Actually in the

> > first case, the coroner has decided to rule it homicide (as in murder) since

the nurses were so

> > negligent. But the second one is still being investigated. Scary eh??

> >

> > Oh well, that's enough. Keep in touch and keep the brain going on those

biology lessons LOL

> >

> > Debby

> > PS How's the snow?? We were belted last night with news reports of the 1-2

cm. we were expected to

> > get today. Oh leave for work real early etc. etc.they were cautioning us!!

And it was probably

> > about a 1/2 a cm when I got up--man we are wimps here in T.O. when it comes

to snow!!!!!

> >

> > and Cheryl Vanderheyden wrote:

> >

> > > Hi Debby,

> > >

> > > Sorry it takes forever to get around to answering sometimes. We went to

Pancake Bay for the

> > > first time this summer and had fun on the beautiful beach except that it

was cold. We are

> > > actually from Milton, and moved here 3.5 years ago. We make numerous

trips to the Toronto area

> > > every year...including Christmas this year. That's how I got started

re-opening this can of

> > > worms...In the spring of '99 we had an immediate referal to sick kids only

5 or 6 weeks after

> > > the appointment was made. I don't know who we were going to see. It was

a weight gain clinic

> > > and there would be a panel of doctors and dieticians etc. who would

determine if further tests

> > > were necessary, and GH had been mentioned by our doctor. They really

inconvenienced us by

> > > cancelling on short notice so I said " don't bother rescheduling " . I

thought it would easy to

> > > get in again when we were planning a trip " home " . I guess it isn't that

easy, and now our ped.

> > > has sent a photo of to somebody in London(an endo?). I will find

out who on Wed at our

> > > appt. And just for the record, there aren't any doctors in the SOO with

credentials!!!

> > >

> > > Cheryl

> > >

> > > Debra Baillargeon wrote:

> > >

> > > > Hi Cheryl

> > > > Sault Ste Marie is a nice town. On my honeymoon, my husband (now ex) and

I camped at Pancake

> > > > Bay. We ended up in " the Soo " one day when it rained. We kicked around

in a mall.

> > > >

> > > > Anyway, my son was 5-3 when he was born. I smoked when I was pregnant

but had also smoked

> > > > with my daughter and she was 7-11. But with Adam I had some bleeding at

32 weeks of

> > > > pregnancy and was hospitalized for a week. During that week the

ultrasound showed Adam to be

> > > > 5 lbs and 6 weeks later when he was born, he hadn't grown much since

that time.

> > > > The doctors figured it was a combination of the smoking and a possible

tear or something in

> > > > the placenta that restricted food getting to him.

> > > > The doctors felt he was initially growing and " catching up " fine until

around 9 months when

> > > > his weight gain seemed to plateau. By a year he was a skeleton. So began

the rounds to see

> > > > why he wasn't growing.

> > > > I tell you this because, in the end, he was given the RSS diagnosis. No

one can prove for

> > > > sure the kids have it. It's basically one of elimination of any other

problems coupled with

> > > > some visual characteristics.

> > > > What doctor were you supposed to see at Sick Kids. Dr. Ehrlick by any

chance?? He was the

> > > > one who told me Adam had RSS but he couldn't do anything for us and I

wasn't to come back.

> > > > (that was in and around 1996 or 1997). He has since retired and the head

of endo. now is Dr.

> > > > Daneman, who has examined Adam, has agreed with the RSS diagnosis and is

starting the

> > > > process to get GH.

> > > >

> > > > Unfortunately this process is proving to be very slow. I am teacher and

have a good

> > > > insurance/health care plan with the school. He has been " applying " for

approval from my

> > > > insurance for--oh 2 months or so now (but then again I don't know for

sure--maybe he hasn't

> > > > even started the paperwork yet all I know is when I call, his assistant

says they are

> > > > working on it and won't say anything else).

> > > > Dr. Daneman did assure me that if my insurance will not cover the growth

hormone treatments

> > > > he can still get it, from the drug company, without my paying. He says

that the company

> > > > needs the " stats " of GH working for RSS kids so they can widen their

base of approved

> > > > treatment options through OHIP.

> > > >

> > > > I know it's not easy to get down to Toronto from where you are. And with

the winter coming

> > > > it's even more difficult to think of. But if you decide you would like

to try again and see

> > > > what the doc's at sick kids have to say...just let me know.

> > > > You know from experience that even if you were to get a referral

tomorrow, it would take 4-6

> > > > months for you to get an appointment anyway. So you'd be looking at the

spring anyhow

> > > > (better driving weather).

> > > > If you want, keep it in mind that I am out here and I can always help

out (recommend hotels,

> > > > how to drive down there, a free meal at my place etc.) I live in

Scarborough (which is a

> > > > suburb of downtown Toronto--it takes me about 1/2 hour to drive to sick

kids) but my house

> > > > is only 5 minutes off the 401 (which is the eventual highway you would

end up on to get into

> > > > Toronto anyway).

> > > >

> > > > Give it some thought. I am a firm believer (after many mistakes!!) of

getting second

> > > > opinions. That way, either you get things confirmed or you have someone

else's opinion on

> > > > options.

> > > >

> > > > Please write back and let me know how things are and I'm interested in

which doctor you were

> > > > supposed to see at Sick Kids.

> > > >

> > > > Ps I would strongly recommend Dr. Daneman (over Dr. Ehrlick) as he was

very straight forward

> > > > and honest with us. He seemed to know what he was talking about and had

a good " bed side

> > > > manner " . I also have a endo. pediatric specialist that sees Adam for the

" regular " things.

> > > > She's excellent too and is involved in on going research through sick

kids but has her own

> > > > " regular " practice. But you wouldn't want to get into having to drive

down here every time

> > > > you needed to see the doctor. Although, if you'd like, I could call her

and ask her if she

> > > > could recommend a good doctor comparable to her credentials up in the

" soo " . She also has a

> > > > daughter with a growth disorder, so she is wonderful and caring.

> > > >

> > > > Let me know.

> > > >

> > > > Thanks

> > > > Debby

> > > >

> > > > kevinandcheryl.vanderheyden@... wrote:

> > > >

> > > > > Hi Debby,

> > > > >

> > > > > I think I am figuring out how to use this message board thing!

> > > > > Anyway, we live near Sault Ste Marie in Ontario. I am starting to

> > > > > think I may have over reacted to right away think that my son may have

> > > > > RSS. He has lots of the characteristics, but there are lots he

> > > > > doesn't have too. He was 8lbs at birth and grew well for the first

> > > > > few months. Aside from not growing and not wanting to eat, he is too

> > > > > healthy. How do they actually diagnose RSS, since the cause isn't

> > > > > understood and symptoms vary so much? What is involved in getting

> > > > > approved for GHt? Our pediatrician mentioned getting Gh pretty

> > > > > casually 1.5 years ago and sent us to Sick kids, but our appointment

> > > > > gat cancelled and I never got around to going back. I guess I didn't

> > > > > realize we might be dealing with something serious. Oh well, there's

> > > > > still lots of time.

> > > > >

> > > > > Cheryl

> > > > >

> > > > > >

> > > > > > > Hi, my name is Cheryl and I have a son named who will be 3

> > > > > on

> > > > > > > Dec. 1. He has not been diagnosed with RSS, but after discovering

> > > > > > > this group and the Magic site, I know in my heart. We just had a

> > > > > bone

> > > > > > > age done, and are waiting on results. I just wanted to introduce

> > > > > > > myself, and let you know that I am getting to know a little about

> > > > > > > many of you from the messages here. I would like to hear from

> > > > > anyone

> > > > > > > in Canada to find out who the " good " endos are, and anything else

> > > > > I

> > > > > > > might need to know that is different in Canada than in the US.

> > > > > Thanks.

> > > > > > >

> > > > >

> > > >

> > >

> > >

[Guest guest]

Hi , when my daughter first broke out almost a year ago I wondered if

it was an infection that could be treated with antibiotics. The doctors

didn't believe this was the problem because there were no other symptoms so

she wasn't prescribed any. During the summer my daughter had 2 cases of

strep throat and 1 urinary tract infection. All were treated with

antibiotics so in her case these antibiotics didn't help with her CU. Hope

you have better luck and stay hive free. Donna

[Guest guest]

New member

>

> I just ran across this mailing list and was delighted to find it. I have

had

> chronic hives for 3 years. Basically woke up one day and there they were.

> What a sight! They never go away, but are controlled by Zyrtec enough to

> tolerate. I turned to the Internet about a year ago and have found some

> great information, as I know you all have, but still nothing seems to

help.

> I have had the allergy tests. I am getting blood work done next Tuesday

to

> check my thyroid. Sad thing is, I am almost hoping there is something

wrong

> with my thyroid just to have an answer! The most frustrating thing is not

> knowing what causes the problem. I have come to terms that it is a

problem I

> have and it appears I will for a while. Anyway, I think this list is

great!

> We can all use some support with something so frustrating. I am open to

> hearing all of your stories and maybe we can help each other find comfort.

>

> in Michigan

>

>

> ______________________________________________________________________

> To unsubscribe, write to urticaria-unsubscribe@...

>

[Guest guest]

Hi Shona,

Welcome to the group!

You mentioned the contraceptive pill. I used to be able to take it no

problem, but after the urticaria kicked in I was unable to take any form of

it at all. A lot of people on the list have little confidence in their

doctors! I'd be interested to know which dermatologist you're seeing in

London. I remember when my doctor told me I had classic urticaria. He

seemed quite chuffed with himself, but my mother, who writes greek

dictionaries, told me that 'urticaria' is basically the word for itchy

irritated skin! So this doctor was simply telling me what I already knew,

and so has every single one of them since!

The main urticaria list actually changed location a while back, to

urticariaegroups The lady who started up listbot moved on and took

with her all the administrative access so we had no control at all. There

are well over 300 people at egroups. I've forwarded your message along

there, but would you like me to subscribe you as well? You can do this

yourself by visiting the egroups site, but I'm more than happy to do this on

your

behalf if you would like.

Whereabouts in Scotland are you from? I'm in Edinburgh

Best regards

----- Original Message ----

> Dear all

>

> Well I am a new member, and not very sure what to say. I live in London,

but I

> am originally from Scotland.

>

> My itching started around 9 months ago and I have had 9 months of my

doctor

> refusing to send me to a dermatologist and telling me to change my soap,

> washing powder etc etc. I told him numerous times that I was using the

same

> soap I always had, the same washing powder I always had and it made

absolutely

> no difference at all. The rash was completely random and seemed to have

no

> common cause.

>

> Finally I refused to leave until he sent me to a dermatologist which

appeared to

> work. I went off to the hospital imagining that I was going to be put on

various

> diets, and given allergy tests and it would be another six months before

anyone

> agreed what I was allergic to. The very nice dermatologist took one look

and

> said " classic urticaria " .

>

> It was such a relief. After 8 months of itching I was beginning to think

it was all

> in my imagination. The only thing that I can pin it down to was it

started when

> I began to take the contraceptive pill. My GP, the one who changed my

washing

> powder, told me that had nothing to do with it, but I wondered if anyone

else

> had had the same experience. (My confidence in my current GP is quite low

at

> the moment)

>

> Anyway I think I have gone on long enough, and look forward to hearing

more.

> By the way has anyone got any good homeopathic remedies?

>

> Shona

>

> --------------------------------

> Shona Haslam

> Parlimentary Officer

> Evangelical Alliance UK

> email: shaslam@...

> --------------------------------

>

> =

>

>

> ______________________________________________________________________

> To unsubscribe, write to urticaria-unsubscribe@...

>