Re: Tonya Bartlett

[Guest guest]

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

> > with her " althoug

> > I had to give her medication for a Fever that day.

> >

> > So anoter 2 years went by till a wonderfull person

> > came into my life A

> > peadiatrition Dr Elna Gibson she understood me,

> she

> > evaluated my child

> > and her condition, we tried various treatments to

> > build 's

> > Immune system and to prevent the chronic

> pneumonia.

> > We were refered

> > to HF Verwoerd Hospital, where under the care of

> > Prof Witteberg and Dr

> > Andre van Niekerk, 's diagnoses were made

> at

> > the age of 5

> > years. She has a highly IGg2 difficiency,

> developed

> > bronchiectasis

> > from the chronic pneumonia and of course Russal

> > Silver syndrome.

> >

> > They started her on monthley Polygam infusions

> > (Human Imunoglobolin)

> > which helped not to get sick so often.

> We

> > treated her wirh

> > the Polygam till she was 8 years old, where she

> had

> > a

> > lobectomy(partial removal of her one lung)to

> remove

> > the affected part.

> > Since then she never had Pneumonia again.

>

> > is now 13 years

> > old and weigs 15kg, and stil wears 6 to 8 years

> > clothes. She is a

> > sweet little one and always have a smile to give.

> > If it was not for

> > that smile I would have not made it throug this

> > years. In all this

> > time I maintained a steady job, never took of

> work.

> > Thanks to my

> > dearest Mom, I even tought her to administer

> > 's Iv medication.

> > Otherwise I went and give her treatment at lunch

> > breaks, after work

> > and in the middle of the night.

> >

> > had to undergo bilateral Osteotomies to

> > straighten her legs,

> > and since 1 Jan 2004 her left leg did not heal,

> the

> > internal

> > ficksation had to be replaced twice, and she was

> in

> > a spica splint for

> > 8 months. Now the only thing we can do is to hold

> > thumbs for her leg

> > to heal.

> >

> > We made it, and are trying to get permision form

> our

> > Medical Aid to

> > start growth hormone treatment. has got

> all

> > the clinical

> > signs of the Syndrome and is actually a

> > beatifull child, and I

> > love her to death. It was hard to have depression

> > and handling it

> > myself. Sometimes dificult to handle people's

> rude

> > comments, just

> > bacause they did not ask qeustions and did not

> > listen. If anyone has

> > qeustions where I can assist you, feel free to do

> > so. My child is

> > over the worst and now we can breathe I needed

> help

> > a long time ago,

> > and the support groups and various countries

> should

> > be more reachable.

> >

> > I only got all the information of the Syndrome in

> > 2003. That is a

> > shame I could have done a lot more!

>

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