Re: Re: Elize

[Guest guest]

Maddy is getting TPN it's all the fats and lipids that the body needs to

survive (she doesn't eat well enough right now to get that through feeding and

cannot handle tube feedings) through a port, picc or central line. She is very

malenutrition and needs this to help her gain weight.

She will need to be on the TPN for a month so she will be well enough to go

through surgery.

Chrissy

[Guest guest]

Silver Medal! She should be proud of herself!! I'm sure it must be

difficult to have doctors fluctuate on their diagnosis. Keep us all posted!

Dayna

_____

From: RSS-Support [mailto:RSS-Support ] On

Behalf Of Elize Visser

Sent: Sunday, September 11, 2005 6:35 AM

To: RSS-Support

Subject: Re: RE: Dayna Carney

Hi Dayna

I went through all my literature that I gathered

through the years, the post nasal drip is more prone

to one with the IgG2 difficiency, but can also be

related to RSS, because they are prone to chronic

fluid in the mid ear, anatomically the ear, nose and

throat are connected with tubes that handle fluid

drainage from these areas.

We visited a Endo on the 8th, and the news I got is

that he now says that has'nt got RSS and

wanted to know on what bass he diagnoses was made in

1998 by the Peadiatric Pulmonologest ( At the time she

was hospitallised for one week for tests.)

Now we have to go through all the cromozone studies

and Growth hormone studies again, mainly to get the

medical aid to pay for GH, If the levels are

acceptable. I wonder what the next diagnoses will be.

turns 13 on the 23 October, is as big as a

7year old at this stage. Had special Olympis on the

10th of September and received a silver medal for the

20m walk, she was very proud of herself.

Elize

--- Dayna Carney wrote:

> Elize,

>

>

>

> My goodness your daughter is a trooper!! I think I

> must have missed how old

> she was in an earlier post, can you tell us again

> how old she is? I too

> think good vitamins and minerals can make a world of

> difference in the

> immune system!! My 3 yr old Alyssa has her first

> day of preschool today and

> I was just thinking that I am not looking forward to

> all the colds etc, that

> come with a child first entering school!!

>

>

>

> I have never heard of post nasal drip as a

> characteristic of children with

> RSS. Can you tell me where you found that

> information? It's very

> interesting.

>

>

>

> Dayna

>

> _____

>

> From: RSS-Support

> [mailto:RSS-Support ] On

> Behalf Of Elize Visser

> Sent: Wednesday, September 07, 2005 7:09 AM

> To: RSS-Support

> Subject: Re: Tonya Bartlett

>

>

>

> Hi Tonya!

>

> Tonya use to get pneumonia so often bacause

> she had a highly selective IgG 2 Immune difficiency,

> only diagnosed when she was 5years old. We tried to

> give Berrygloben injections, with should better the

> immune system, without any success. From the age of

> 5, They prescribed Pollygam (Human immunoglobulin)

> once every 3 weaks IVI. Then she started to get

> better for 6 months, and then 1 year and till she

> was

> well enough to have a op to remove part of her right

> lung in which she contracted complications due to

> the

> chronic pneumonia. Polygam made the difference.

> And

> also vitamin supplements. I used vitamin C, all the

> B

> vitamins. cod liver oil, and vitamin A which clearly

> improved hes skin integraty. Vitamin a can only be

> given once every 6 months. 1 tablet a day for 14

> days.

> One ting that may contribute to the pneumonia is the

> fact that children with RSS tent to have a chronic

> post nasal drip, if infected can cause pneumonia.

> So

> one should try to prevent post nasal drip, your Dr

> can

> advise you on nasal sprays that will help, but not

> iIliadin nasal spray as it thins the mucus membrane

> if

> used in long term, causing nose bleeding.

> did not even had a could this year. And she is on

> no

> medication other than her vitamin supplements.

>

> Elize

>

> --- Tonya Bartlett

> wrote:

>

> > Aubrey is 3 1/2 now and finally weighs 23 lbs

> and

> > it has been a chore getting her there. I think she

> > last measured at 34 inches. I don't know how I all

> > of a sudden forgot that because I normally obsess

> > over her weight and what not. Aubrey, much like

> > , seems to get pneumonia pretty

> frequently.

> > Luckily, when she gets it the ped is pretty good

> > about letting her come back for her antibiotics in

> > the clinic and not admitting her. We've got the

> > nebulizer and everything at home so it works out

> > really well. However, there were about 4 times she

> > had to be admitted to get IV antibiotics to treat

> > it. Aubrey was born at 27 wks weighing 1lb. 3oz.

> > which was actually about the size of a 23 wkr. It

> > sounds like you have alot of helpful advice to

> > offer. I can't wait getting to hear more about you

> > and .

> > Tonya

> >

> > Elize Visser wrote:

> > Tonya!

> > Tonight I went through all my first Yahoo Mails

> 760

> > of

> > them, and I learned a lot and also related to a

> lot

> > of

> > incidents, some of which we have overcome. And

> > there

> > are also a few same qeustion's to ask. How old is

> > Aubrey now?

> >

> > Elize mom to

> >

> > --- Tonya Bartlett

>

> > wrote:

> >

> > > I know exactly how you feel, it's wonderful

> being

> > > able to talk to someone who can relate.

> > > sounds like a wonderful person as do you.

> Welcome

> > to

> > > the group.

> > > Tonya mom to Aubrey

> > >

> > > veronicavisser wrote:

> > > Hi! It is nice to eventialy be able to

> communicate

> > > about my child's

> > > condition. was born on 10 October 1992

> > at

> > > a birth weight of

> > > 900 grams and 52cm long. She was born

> > > dismenture(small for date

> > > baby), and looked horible I was disapointed,

> > because

> > > here I had this

> > > pink, pealing very skinney little baby.(In all I

> > was

> > > acused of being a

> > > alcoholic and or a chain-smoker to give reason

> for

> > > my childs birth

> > > condition.)

> > >

> > > was hospitalised for 2 and 1/2 months

> in

> > an

> > > icubator in a

> > > general hospital facility. She was tube fed and

> > did

> > > not move at all

> > > by herself. Luckely I am a registred nurse and

> > > could at least give

> > > her the tube feeds. Althoug I was not allowed

> to

> > > cuddle her or pick

> > > her up at all.

> > >

> > > At her first week she had a elevated temparature

> > of

> > > 40degrees, and I

> > > was shocked to see the big infusion in my childs

> > > head. It was said

> > > that she got sick because she was handled too

> > mutch.

> > > She was put on

> > > IV antibiotic treatment. She got better. After

> > > discharge at the

> > > wieght of 2kg she was only at home for 5days and

> > > needed to be admitted

> > > again. By then her peadiatrition had a Heart

> > attack

> > > and was not

> > > available. It was very difficult to explain to

> > the

> > > medical personnel

> > > that took 1 hour to drink her 20ml feed

> > (a

> > > 3 hour routine)

> > > They thought that my child was underfed and that

> I

> > > could not handle

> > > her well. Nobody took the time to listen to her

> > > history.

> > >

> > > So things wnet on for about 2 years, continously

> > > contracting

> > > pneumonia, admitted and treated with Iv

> > antibiotics.

> > > Then my general

> > > practitioner refered her to an Endocrine

> > Specialist

> > > in Pretoria South

> > > Africa, who just said " This child has just got a

> > > over Pigmentation

> > > (coulouring of her skin)and there is nothing

> wrong

>

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