questions

May 12, 1999

Hi Ken,

The article you are looking for can be obtained by calling MAGIC and asking

for article #126A. In the meantime, if you have the Spring 1999 MAGIC

newsletter you can read the abstract from the article. I included it in the

RSS section of the newsletter. The abstract is a summary of the article's

content. The article discusses RSS and growth hormone. One of the

observations I found very interesting in the article is the mention of bone

age advancing inappropriately during middle childhood years. This is

something many of us have been aware of for some time. However, now there is

published information about this.

June 19, 1999

,

From an article called " Craniofacial and Dental Characteristics of

Silver- Syndrome " from the American Journal of Medical Genetics

56:229-236, they said " Occlusion was deep, with crowded lower and vertical

maxillary incisors. "

Our son is 4 and has very crowded teeth. His dentist says he has more

coming! He said that Tim's teeth are big for his mouth size. The article

said some RSS have small teeth and that there is a large variation of

characteristics...

RSS also can have problems with acidosis - something the endocrinologist

may have checked out. Do you know if Trey may be a bit dehydrated? This

may be easy if he doesn't like drinking much.

Inga

At 03:35 PM 6/21/99 -0700, you wrote:

>

>Hi, this is " Grandma " again. (My grandson Trey was diagnosed with RSS

>at 15 months) Trey is going to his pediatric gastroenterologist tomorrow so

>please say a little prayer for his weight gain. I have a couple of

>questions. Since almost day one, Trey has had terrible constipation. Is

>this common with RSS? He is on Pediasure with fiber which does help a lot,

>but is not always available for his mom to buy. Next question, his teeth are

>helter skelter in his little mouth and his top gum line seems slanted. I

>read that growth deficiency also effects the growth of teeth. Do any of

>your children have braces or surgery to correct this? Third question, when

>do the growth hormone shots usually start? Last question,(for now) is his

>urine supposed to smell so strong? This scares me because on the Dr. Koop

>health website it says that RSS children have a slight increased risk to

>Wilm's tumor of the kidney. I also want to say that I enjoy reading

>everyone's notes. You all seem so loving and caring and very, very

>supportive. I am trying to encourage my daughter to get on this thing and

>write to all of you. I print out almost everything for her. Until later,

>Grandma

>

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

>How has ONElist changed your life?

>Share your story with us at http://www.onelist.com

>

June 21, 1999

Hi ,

We asked our son's geneticist about the increased risk of Wilm's tumor for

RSS children. He did a literature search and found that there was 1 ( one )

case of an RSS child developing Wilm's tumor. So his conclusion that this is

not really an issue to worry about. In my own review of articles I have

found no other mention of the increased risk of Wilm's tumor. It was

mentioned only in a very old article.

I hope this helps

Ken M

(Dad to 26 months )

----------

>

>To: RSS-Supportonelist

>Subject: questions

>Date: Mon, Jun 21, 1999, 6:35 PM

>

> Hi, this is " Grandma " again. (My grandson Trey was diagnosed with RSS

> at 15 months) Trey is going to his pediatric gastroenterologist tomorrow so

> please say a little prayer for his weight gain. I have a couple of

> questions. Since almost day one, Trey has had terrible constipation. Is

> this common with RSS? He is on Pediasure with fiber which does help a lot,

> but is not always available for his mom to buy. Next question, his teeth are

> helter skelter in his little mouth and his top gum line seems slanted. I

> read that growth deficiency also effects the growth of teeth. Do any of

> your children have braces or surgery to correct this? Third question, when

> do the growth hormone shots usually start? Last question,(for now) is his

> urine supposed to smell so strong? This scares me because on the Dr. Koop

> health website it says that RSS children have a slight increased risk to

> Wilm's tumor of the kidney. I also want to say that I enjoy reading

> everyone's notes. You all seem so loving and caring and very, very

> supportive. I am trying to encourage my daughter to get on this thing and

> write to all of you. I print out almost everything for her. Until later,

> Grandma

>

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

> How has ONElist changed your life?

> Share your story with us at http://www.onelist.com

>

June 21, 1999

Howdy Grandma , I'm a newbie, but in the case of teeth, my 6-year old has

tiny teeth all helter-skelter. When he lost his first one, it was so tiny, we

almost lost it. My other kids (all normal) don't have this problem. In the

brochure from the Magic Foundation, it lists this as one of the " optional "

problems RSS kids face. - Hawkins

June 21, 1999

If the pediasure w/ fiber helps (as it does for our son), order it directly from

Ross. Their toll-free phone # is 1-. They'll ship it right to your

door. You are right though - hardly any store carries any real inventory of the

stuff w/ fiber.

Our son, , also gets constipated and dehydrated whenever he goes into one

of his " bad periods. " On doc's recommendation, we are giving him about 1.5 tsp

of mineral oil a day which has made a BIG difference in the duration and

frequency of these bad periods.

Mark

Dad to (RSS, MIC-Key, Nissen)

June 22, 1999

THANKS KEN>

June 22, 1999

Dear Grandma ,

I am the mother of RSS identical twin girls. Both of the girls have had

constipation since they were born. Initially we put dark Karo in their

formula and used pediatric glycerin suppositories. As they got older, they

are now 11, we just tried various dietary intervention. Prunes, etc. One

pediatric endo advised us to use Citracil. Since their bodies have matured

so has their digestive system. We have constipation once in a great while

but not on a consistent basis. We also have " dental " issues. The girls have

mottled enamel and teeth that are way too big for their bone structure. The

x-rays are a nightmare. We have had our first ortho consult and will be

starting phase 1 in the next month or two. We have watched their dental

sturcture since they were 3. I would suggest going to a pediatric dentist.

Just wanted to let you know these are things that I have has with the girls.

Le

August 5, 1999

Let me know if you want any other questions relating to RSS answering.

Cheers

Steph Young

August 7, 1999

Hello All,

- your guess was correct - I am from the North East of England, I

live about 10 miles from a town called Middlesbrough. I have a slight

assymetry problem - but not to the extent that I need one shoe raised. My

left side of my body is slightly bigger than the right. I can remember as a

child putting my hands straight together whenever a Junior Doctor was being

examined at the hospital!! I used to try and shock them by wearing bright

purple nail varnish!! I didn't mind helping out as it helps the medical

profession become more aware of this condition. I think potatoe chips are

the same as crisps, I'm always in wonder at how American English and English

English (!!!!) differ.

Katy - I used to sweat alot as a baby, especially on my forehead and it

used to take my Mum about 2 hours to feed me one bottle - then it would be

nearly time to feed me again!! I grew out of the sweating profusively, but

find that I am still a slow eater and need to have regular meals and snacks

to keep going. It is all about management and knowing your limits.

Ken thank you for the tip about eating meat for breakfast.

Speak to you all later

Steph Young aged 20 with RSS

August 8, 1999

Dear Joanne,

I'm afraid I do not know anything about the CGF in Coventry. Do you have any

details that you could send me?

Thanks

Steph

August 8, 1999

To

are you coming to the CGF conference on the 9th of october in Coventry.I no

that many of the parents of children with RSS [including myself]would love

to meet adults with RSS

joanne mum to -christian-3 years-rss

Re: Questions

>

> Hello All,

>

> - your guess was correct - I am from the North East of England, I

> live about 10 miles from a town called Middlesbrough. I have a slight

> assymetry problem - but not to the extent that I need one shoe raised. My

> left side of my body is slightly bigger than the right. I can remember as

a

> child putting my hands straight together whenever a Junior Doctor was

being

> examined at the hospital!! I used to try and shock them by wearing bright

> purple nail varnish!! I didn't mind helping out as it helps the medical

> profession become more aware of this condition. I think potatoe chips are

> the same as crisps, I'm always in wonder at how American English and

English

> English (!!!!) differ.

> Katy - I used to sweat alot as a baby, especially on my forehead and it

> used to take my Mum about 2 hours to feed me one bottle - then it would be

> nearly time to feed me again!! I grew out of the sweating profusively, but

> find that I am still a slow eater and need to have regular meals and

snacks

> to keep going. It is all about management and knowing your limits.

>

> Ken thank you for the tip about eating meat for breakfast.

>

> Speak to you all later

> Steph Young aged 20 with RSS

>

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

August 8, 1999

Joanne - What is CGF conference??

brenda Mom to tte RSS 4yrs

August 9, 1999

Hi ,

I agree, the difference between the Queen's English and American English is

very interesting.

I just wanted to clarify the advice I gave you. it doesn't have to be meat

just a high protein breakfast like eggs, peanut butter, or a high protein

drink. I know when I eat a high protein breakfast, I do not have that crash

around 10 Am and I usually eat less at lunch and dinner.

Hope this helps

Ken M.

----------

>

>To: RSS-Supportonelist

>Subject: Re: Questions

>Date: Sat, Aug 7, 1999, 9:14 AM

>

> Hello All,

>

> - your guess was correct - I am from the North East of England, I

> live about 10 miles from a town called Middlesbrough. I have a slight

> assymetry problem - but not to the extent that I need one shoe raised. My

> left side of my body is slightly bigger than the right. I can remember as a

> child putting my hands straight together whenever a Junior Doctor was being

> examined at the hospital!! I used to try and shock them by wearing bright

> purple nail varnish!! I didn't mind helping out as it helps the medical

> profession become more aware of this condition. I think potatoe chips are

> the same as crisps, I'm always in wonder at how American English and English

> English (!!!!) differ.

> Katy - I used to sweat alot as a baby, especially on my forehead and it

> used to take my Mum about 2 hours to feed me one bottle - then it would be

> nearly time to feed me again!! I grew out of the sweating profusively, but

> find that I am still a slow eater and need to have regular meals and snacks

> to keep going. It is all about management and knowing your limits.

>

> Ken thank you for the tip about eating meat for breakfast.

>

> Speak to you all later

> Steph Young aged 20 with RSS

>

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

August 10, 1999

To

Are you a member of the Child Growth Foundation?If not ,they have a yearly

conference and this years is in Coventry on the 9th and 10th of october.The

saturday is medical meetings and sunday is research updates and inter-group

sessions.The CGF will have details[bookings have to be made by 17/9/99]

Joanne-hertforshire

Re: Questions

>

> Dear Joanne,

> I'm afraid I do not know anything about the CGF in Coventry. Do you have

any

> details that you could send me?

> Thanks

> Steph

>

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

August 11, 1999

Hi Ken,

I think I'll be getting my Mum to go shopping for some peanut butter - yum

yum!!

Bye for now

Steph

May 9, 2000

I sent them to the list and I have more if you would like them.

Nanceet wrote:

, Yes,

i would be very interested in the links, if you would send them to me. Thank

you very, very much! Are any of the people on

this list expiencing vision problems? Are any

in wheelchairs? Hugs, Nancee

Re: questions

Nancee,

I am going to send some links to the list for you.

Nanceet wrote:

Hi, I

have some questions, if someone has a few minutes. With

all of the conditions that I have, sometimes it is hard to know what to

do.....or which symptom goes to which condition...... Is

tingling and numbness, but pain too in hands a feet a symptom of fibro?How

about painful, very stiff legs.....upon waking mostly...I limp...for a

few hours...and if sitting too long...and as the day goes on it gets worse

again.How about pain in your body like flu....achy?Blurry vision/vision

loss?Total tiredness? Is there a site where I can

read about fibro? Thank you, sorry if that was too

many questions for one note!! Hugs, Nancee

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May 9, 2000

Hi Nancee

Hands: I have tingling pain, numbness and since my carpal tunnel surgery I

also have

lost strength

Legs: Stiffness upon rising is one of the first mentioned symptoms of

fibro. I also limp if I sit too long

and I find if I over do it one day I may be stiff for several

days.

Achiness: Another symptom that is usually first mentioned to the doctor as

it is often described

as having the flu every day

Vision : the optometrist recently told my 15 year old daughter that with

Fibro her vision will

change often , sometimes getting better sometimes worsening

Tiredness: yes, suddenly a wave of exhaustion may come over you or you may

wake up with it.

Thinking, moving, making decisions are very difficult.

This is when I avoid driving.

Hope these answers help. I will also send you some links.

Hugs

----------

To: egroups

Subject: questions

Date: Tuesday, 09 May, 2000 7:39 AM

Hi,

I have some questions, if someone has a few minutes.

With all of the conditions that I have, sometimes it is hard to know what

to do.....or which symptom goes to which condition......

Is tingling and numbness, but pain too in hands a feet a symptom of fibro?

How about painful, very stiff legs.....upon waking mostly...I limp...for a

few hours...and if sitting too long...and as the day goes on it gets worse

again.

How about pain in your body like flu....achy?

Blurry vision/vision loss?

Total tiredness?

Is there a site where I can read about fibro?

Thank you, sorry if that was too many questions for one note!!

Hugs, Nancee

May 9, 2000

This was the best yet.......thank you very, very much.

All of you have been so very helpful.

You guys are the best.

Hugs, Nancee

Re: questions

Hi NanceeHands: I have tingling pain, numbness and since my carpal tunnel surgery Ialso have lost strengthLegs: Stiffness upon rising is one of the first mentioned symptoms offibro. I also limp if I sit too long and I find if I over do it one day I may be stiff for severaldays.Achiness: Another symptom that is usually first mentioned to the doctor asit is often described as having the flu every day Vision : the optometrist recently told my 15 year old daughter that withFibro her vision will change often , sometimes getting better sometimes worseningTiredness: yes, suddenly a wave of exhaustion may come over you or you maywake up with it. Thinking, moving, making decisions are very difficult.This is when I avoid driving.Hope these answers help. I will also send you some links.Hugs----------To: egroupsSubject: questionsDate: Tuesday, 09 May, 2000 7:39 AMHi,I have some questions, if someone has a few minutes.With all of the conditions that I have, sometimes it is hard to know whatto do.....or which symptom goes to which condition......Is tingling and numbness, but pain too in hands a feet a symptom of fibro?How about painful, very stiff legs.....upon waking mostly...I limp...for afew hours...and if sitting too long...and as the day goes on it gets worseagain.How about pain in your body like flu....achy?Blurry vision/vision loss?Total tiredness?Is there a site where I can read about fibro?Thank you, sorry if that was too many questions for one note!!Hugs, Nancee

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May 10, 2000

Thank you for writing Toni.............do you have disability from your job...........or the govt?

do you work on the side??? I have always worked.......I am not sure how to stop......except that it is getting harder and harder to keep on.......

Sometimes I wonder if I am helping this along by not slowing down.....

Oh well, Thank you for writing.

Hugs, Nancee

questions

Nancee, Hi there.i am Toni, and I too have pain and numbness, as well asstiffness due to the fibromyalgia........as a matter of fact, both of myhands are constantly numb, and 6 of my fingers are totally numb.yes, Itype with just four fingers. As for the flu achy, yes, that too can befrom the fibromyalgia, as well as vision loss, and blurry vision, andmost definately the tiredness. You see, fibro affects the muscles, andevery par tof our body is controled with muscles in one way or another,and when we don't get rem sleep, which i sthe most restful sleep, ourmuscles don't get the nutrients and vitamins needed to be healthy and soon.........I take an herbal medication from my chiropractor calledfibroplex........it helps to restore the vitamins and nutrients yourmuscles need. You can find a similiar type of pill at any nutritionalstore, but it is not the same ............you may want to give that atry. If you want more info, please feel free to email me personnally. Ido know all that you are feeling...and because of all that youmentioned, I qualified for total disability. Huggles.........Toni

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August 23, 2002

Dear v,

I too have an adult BP daughter with 2 siblings. My daughter is almost 30 &

married with twin sons, her brother is 27 and sister almost 17. The brother has

never sided with her sister because he grew up watching what she did to the

family and me. But the youngest actually got very close to her sister while

they were living near us recently. That was until she stepped over that line

from good to bad. I am not exactly sure what happened but now the sister

doesn't want anything to do with the BP sister. She says she never wants to see

her again. But she will miss her nephews. The BP and family then moved away

because I would not side with her over her younger sister... therefore I did not

love her and she was the black sheep.

Luckily, the siblings have never blamed me for the problems. I wish I knew what

to tell you, but hang in there. I know what you are going through. I doubt

very much that M believes everything that L tells her. She is close enough in

age to have seen that you raised them well. They are smarter than that. Good

luck!

Nana

August 27, 2002

Thanks for the responses. Today I was tested again by L, and remembered

to breath, add my opinion more frequently, and set a modest limit.

After we spoke, I started haranging myself for not being assertive

enough, and was able to stop it, and keep track of what I did right.

You all know how, when you've " done the sponge " for years, it's hard to

believe you can change, but I'm determined to at least stop my

collusion in my child's problems. Thanks so much for your words of

encouragement.

> Dear v,

>

> I too have an adult BP daughter with 2 siblings. My daughter is almost 30 &