New Here

September 27, 2002

I guess I should introduce myself. My name is and I had RNY surgery

9/00. I was on these lists initially and then lost my computer in the

divorce(so to speak). I really have felt the need to reconnect again, so I am

back on the lists. I began to live like a " normal " person and subsequently have

regained a little. I have about 30 more pounds or so to go. I need to be

reminded that I am not alone out there. I'm mostly a lurker, but will chime in

from time to time. Thanks

RNY 9/00

295/190

November 24, 2002

,

I hope that he doesn't have CF, but if he does, then you are in the right

place. Share along with us as we travel the road.

Much love,

-

Mum to Cate 10yrs wocf and Sian 6yrs wcf, asthma, GERD and ADD?

Canberra Australia-

November 24, 2002

,

I hope that he doesn't have CF, but if he does, then you are in the right

place. Share along with us as we travel the road.

Much love,

-

Mum to Cate 10yrs wocf and Sian 6yrs wcf, asthma, GERD and ADD?

Canberra Australia-

November 24, 2002

,

I hope that he doesn't have CF, but if he does, then you are in the right

place. Share along with us as we travel the road.

Much love,

-

Mum to Cate 10yrs wocf and Sian 6yrs wcf, asthma, GERD and ADD?

Canberra Australia-

November 26, 2002

no he isnt on the emzymes yet and they have not done any of those

other tests yet and to the other question about the sweat i have no

idea on that someone else asked me that and i asked them what am i

suppose to taste it and they didn't answear me on that one we have

the sweat test on wednesday with some blood work also but there was

some good news since last monday he gained 13 ounces biggest weight

gain ever woo woo

> Hi ,

>

> welcome to the list! Is your son on enzymes already? And have they

done a

> throat swab on him to find out what kind of bacteria he harbours

in his

> airways? Regardless whether he has CF or not those steps could be

helpful to

> solve some of his problems. I hope that you'll get a dx soon and

your son

> will receive the correct treatments. There are other preemies on

this list

> too and some who are also in limbo with the diagnosis.

>

> Peace

> Torsten, dad of Fiona 5wcf

> e-mail: torstenkrafft@w...

> new here

>

> > hi

> > they have not yet done the test on my son to see if he has cf or

not

> > but they do want to do it seeing that he has alot of the signs of

> > having it. he has the loose stools all the time failure to gain

> > weight the breathing troubles he has colds all the time or lungs

> > infections in and out of the hospital he is 11 months old but

seeing

> > that he was born 11 weeks early he should only be 9 months old.

he

> > has a g-tube he got it in august and has stayed at 14 pounds or

> > around there since then. he is on 24 cal an ounce formula and

that

> > isnt helping with weight issues either he has had about 12

surgeries

> > already and i just dont want him to have any more it at all

possible

> > he also has cp

> > there was a quick introduction

> > heather

> >

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

> > The opinions and information exchanged on this list should IN NO

WAY

> > be construed as medical advice.

> >

> > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

> TREATMENTS.

> >

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

> >

November 26, 2002

no he isnt on the emzymes yet and they have not done any of those

other tests yet and to the other question about the sweat i have no

idea on that someone else asked me that and i asked them what am i

suppose to taste it and they didn't answear me on that one we have

the sweat test on wednesday with some blood work also but there was

some good news since last monday he gained 13 ounces biggest weight

gain ever woo woo

> Hi ,

>

> welcome to the list! Is your son on enzymes already? And have they

done a

> throat swab on him to find out what kind of bacteria he harbours

in his

> airways? Regardless whether he has CF or not those steps could be

helpful to

> solve some of his problems. I hope that you'll get a dx soon and

your son

> will receive the correct treatments. There are other preemies on

this list

> too and some who are also in limbo with the diagnosis.

>

> Peace

> Torsten, dad of Fiona 5wcf

> e-mail: torstenkrafft@w...

> new here

>

> > hi

> > they have not yet done the test on my son to see if he has cf or

not

> > but they do want to do it seeing that he has alot of the signs of

> > having it. he has the loose stools all the time failure to gain

> > weight the breathing troubles he has colds all the time or lungs

> > infections in and out of the hospital he is 11 months old but

seeing

> > that he was born 11 weeks early he should only be 9 months old.

he

> > has a g-tube he got it in august and has stayed at 14 pounds or

> > around there since then. he is on 24 cal an ounce formula and

that

> > isnt helping with weight issues either he has had about 12

surgeries

> > already and i just dont want him to have any more it at all

possible

> > he also has cp

> > there was a quick introduction

> > heather

> >

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

> > The opinions and information exchanged on this list should IN NO

WAY

> > be construed as medical advice.

> >

> > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

> TREATMENTS.

> >

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

> >

November 26, 2002

no he isnt on the emzymes yet and they have not done any of those

other tests yet and to the other question about the sweat i have no

idea on that someone else asked me that and i asked them what am i

suppose to taste it and they didn't answear me on that one we have

the sweat test on wednesday with some blood work also but there was

some good news since last monday he gained 13 ounces biggest weight

gain ever woo woo

> Hi ,

>

> welcome to the list! Is your son on enzymes already? And have they

done a

> throat swab on him to find out what kind of bacteria he harbours

in his

> airways? Regardless whether he has CF or not those steps could be

helpful to

> solve some of his problems. I hope that you'll get a dx soon and

your son

> will receive the correct treatments. There are other preemies on

this list

> too and some who are also in limbo with the diagnosis.

>

> Peace

> Torsten, dad of Fiona 5wcf

> e-mail: torstenkrafft@w...

> new here

>

> > hi

> > they have not yet done the test on my son to see if he has cf or

not

> > but they do want to do it seeing that he has alot of the signs of

> > having it. he has the loose stools all the time failure to gain

> > weight the breathing troubles he has colds all the time or lungs

> > infections in and out of the hospital he is 11 months old but

seeing

> > that he was born 11 weeks early he should only be 9 months old.

he

> > has a g-tube he got it in august and has stayed at 14 pounds or

> > around there since then. he is on 24 cal an ounce formula and

that

> > isnt helping with weight issues either he has had about 12

surgeries

> > already and i just dont want him to have any more it at all

possible

> > he also has cp

> > there was a quick introduction

> > heather

> >

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

> > The opinions and information exchanged on this list should IN NO

WAY

> > be construed as medical advice.

> >

> > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

> TREATMENTS.

> >

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

> >

November 26, 2002

,

about 90% of the people with CF have elevated numbers of sodium and

chloride in their sweat. That's why a sweat test (if positive) is a

very good indicator of CF and that's why pwcf often taste really

salty. Unfortunately the sweat test isn't able to rule out CF, so

when it comes back negative that doesn't mean that a child doesn't

have CF. Many docs who don't deal with CF every day don't know that

and their lack of information causes a lot of trouble. I hope that

you'll attend a certified CF center.

Anyway, congrats to the weight gain, that's a good sign that he may

have something else than CF.

Peace

Torsten

> > Hi ,

> >

> > welcome to the list! Is your son on enzymes already? And have

they

> done a

> > throat swab on him to find out what kind of bacteria he harbours

> in his

> > airways? Regardless whether he has CF or not those steps could be

> helpful to

> > solve some of his problems. I hope that you'll get a dx soon and

> your son

> > will receive the correct treatments. There are other preemies on

> this list

> > too and some who are also in limbo with the diagnosis.

> >

> > Peace

> > Torsten, dad of Fiona 5wcf

> > e-mail: torstenkrafft@w...

> > new here

> >

> > > hi

> > > they have not yet done the test on my son to see if he has cf

or

> not

> > > but they do want to do it seeing that he has alot of the signs

of

> > > having it. he has the loose stools all the time failure to gain

> > > weight the breathing troubles he has colds all the time or lungs

> > > infections in and out of the hospital he is 11 months old but

> seeing

> > > that he was born 11 weeks early he should only be 9 months old.

> he

> > > has a g-tube he got it in august and has stayed at 14 pounds or

> > > around there since then. he is on 24 cal an ounce formula and

> that

> > > isnt helping with weight issues either he has had about 12

> surgeries

> > > already and i just dont want him to have any more it at all

> possible

> > > he also has cp

> > > there was a quick introduction

> > > heather

> > >

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

> > > The opinions and information exchanged on this list should IN

NO

> WAY

> > > be construed as medical advice.

> > >

> > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

> > TREATMENTS.

> > >

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

> > >

November 26, 2002

,

about 90% of the people with CF have elevated numbers of sodium and

chloride in their sweat. That's why a sweat test (if positive) is a

very good indicator of CF and that's why pwcf often taste really

salty. Unfortunately the sweat test isn't able to rule out CF, so

when it comes back negative that doesn't mean that a child doesn't

have CF. Many docs who don't deal with CF every day don't know that

and their lack of information causes a lot of trouble. I hope that

you'll attend a certified CF center.

Anyway, congrats to the weight gain, that's a good sign that he may

have something else than CF.

Peace

Torsten

> > Hi ,

> >

> > welcome to the list! Is your son on enzymes already? And have

they

> done a

> > throat swab on him to find out what kind of bacteria he harbours

> in his

> > airways? Regardless whether he has CF or not those steps could be

> helpful to

> > solve some of his problems. I hope that you'll get a dx soon and

> your son

> > will receive the correct treatments. There are other preemies on

> this list

> > too and some who are also in limbo with the diagnosis.

> >

> > Peace

> > Torsten, dad of Fiona 5wcf

> > e-mail: torstenkrafft@w...

> > new here

> >

> > > hi

> > > they have not yet done the test on my son to see if he has cf

or

> not

> > > but they do want to do it seeing that he has alot of the signs

of

> > > having it. he has the loose stools all the time failure to gain

> > > weight the breathing troubles he has colds all the time or lungs

> > > infections in and out of the hospital he is 11 months old but

> seeing

> > > that he was born 11 weeks early he should only be 9 months old.

> he

> > > has a g-tube he got it in august and has stayed at 14 pounds or

> > > around there since then. he is on 24 cal an ounce formula and

> that

> > > isnt helping with weight issues either he has had about 12

> surgeries

> > > already and i just dont want him to have any more it at all

> possible

> > > he also has cp

> > > there was a quick introduction

> > > heather

> > >

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

> > > The opinions and information exchanged on this list should IN

NO

> WAY

> > > be construed as medical advice.

> > >

> > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

> > TREATMENTS.

> > >

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

> > >

November 26, 2002

,

about 90% of the people with CF have elevated numbers of sodium and

chloride in their sweat. That's why a sweat test (if positive) is a

very good indicator of CF and that's why pwcf often taste really

salty. Unfortunately the sweat test isn't able to rule out CF, so

when it comes back negative that doesn't mean that a child doesn't

have CF. Many docs who don't deal with CF every day don't know that

and their lack of information causes a lot of trouble. I hope that

you'll attend a certified CF center.

Anyway, congrats to the weight gain, that's a good sign that he may

have something else than CF.

Peace

Torsten

> > Hi ,

> >

> > welcome to the list! Is your son on enzymes already? And have

they

> done a

> > throat swab on him to find out what kind of bacteria he harbours

> in his

> > airways? Regardless whether he has CF or not those steps could be

> helpful to

> > solve some of his problems. I hope that you'll get a dx soon and

> your son

> > will receive the correct treatments. There are other preemies on

> this list

> > too and some who are also in limbo with the diagnosis.

> >

> > Peace

> > Torsten, dad of Fiona 5wcf

> > e-mail: torstenkrafft@w...

> > new here

> >

> > > hi

> > > they have not yet done the test on my son to see if he has cf

or

> not

> > > but they do want to do it seeing that he has alot of the signs

of

> > > having it. he has the loose stools all the time failure to gain

> > > weight the breathing troubles he has colds all the time or lungs

> > > infections in and out of the hospital he is 11 months old but

> seeing

> > > that he was born 11 weeks early he should only be 9 months old.

> he

> > > has a g-tube he got it in august and has stayed at 14 pounds or

> > > around there since then. he is on 24 cal an ounce formula and

> that

> > > isnt helping with weight issues either he has had about 12

> surgeries

> > > already and i just dont want him to have any more it at all

> possible

> > > he also has cp

> > > there was a quick introduction

> > > heather

> > >

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

> > > The opinions and information exchanged on this list should IN

NO

> WAY

> > > be construed as medical advice.

> > >

> > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

> > TREATMENTS.

> > >

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

> > >

March 12, 2003

Hi group,

I would be very interested in any responses to 's questions as Barra

(aged 16) is probably facing surgery for the first time in the summer. He

has no immediate symptoms apart from scoliosis (mild) and now possible

reflux.

Cheers, Nicola.

>

>To: " chiari " chiari >

>Subject: new here

>Date: Tue, 11 Mar 2003 19:18:12 -0700

>

>Hi,

> My name is , I have a 4 1/2 year old son who has chiari. I

>found this website from a friend on another support group for a condition

>my other son has called craniosynostosis. My son Andy has chiari as a

>result of his spina bifida. He doesn't have any major problems with the

>chiari as far as breathing goes, but he does have a lot of oral

>hypersensitivity, which over the years he has gotten much better at. The

>biggest problems with him are fine motor control, he doesn't have much, he

>is very weak in his hands and arms, he does not have very good coordination

>or motor planning. He recently got glasses but his evaluation for school

>indicated that his visual processing is not good. Also he seems to be

>having a problem with auditory processing as well although our other son's

>speech therapist noted that in order to test the auditory processing at

>school they use pictures so if his visual processing is off that would have

>an effect on the test, so I'm not sure. Our pedi mentioned that sometimes

>with chiari it can pull on the optical nerve making things look blurry and

>this isn't seen by the eye exam done in the doctors office unless it is

>really bad. My son is having surgery for tethering on his spinal cord on

>Apr 18th. The doctor feels that he should have at least some relief of his

>chiari symptoms after this, because the spinal cord being pulled is pulling

>on the chiari making it worse. As soon as the spinal cord is released he

>should get at least a little better. He said if he isn't then we need to

>start talking about a decompression. This is the main reason I am here. I

>know that the decompression is a dangerous surgery. The tethering is risky

>because it can damage the spinal cord more than it already is, but the

>decompression is working with the brain stem which I know can have very

>serious effects. I am wondering if it would be necessary to do a

>decompression with no breathing problems and he is doing fairly well with

>the oral sensitivity. What I am really asking is in all your opinions what

>warrants a decompression. I know with the adults if the symptoms are

>interfering with life you consider it, but with a child it isn't like doing

>it on me I am making decisions for a child who can't decide for himself. I

>welcome the opinions of the adults who have had or considered having the

>decompression, but I am really looking for parents of children who have

>chiari. Particularly those who have not had problems with pain or

>breathing. At this point I don't even want to consider it, and of course

>we will wait until after this upcoming surgery to see how much improvement

>he has, but I had always thought that he had to be having a lot more

>problems until the doctor mentioned it, and if it causes problems with

>vision and he does have a LOT of problems with his hands I just don't know

>if it would be worth the risk. Anyway thanks for any input on this that

>you can give.

>

March 12, 2003