Re: Waiting for DNA test results

[Guest guest]

I agree you are your child best advocate you know him/her better than anyone

else.I have 8 kids they have all been tested sweat and DNA .My last baby

almost starved to death as a result of a dr not listening Gabrial doesn't

have cf but he did have 3 sweat tests(he couldn't sweat enough he was a

preemie) he had severe refluxcommon in preemies he also had his lungs

collapsed at birth.I hope the tests help get the answer you need.Best wishes

BeckyB.

[Guest guest]

I agree you are your child best advocate you know him/her better than anyone

else.I have 8 kids they have all been tested sweat and DNA .My last baby

almost starved to death as a result of a dr not listening Gabrial doesn't

have cf but he did have 3 sweat tests(he couldn't sweat enough he was a

preemie) he had severe refluxcommon in preemies he also had his lungs

collapsed at birth.I hope the tests help get the answer you need.Best wishes

BeckyB.

[Guest guest]

I agree you are your child best advocate you know him/her better than anyone

else.I have 8 kids they have all been tested sweat and DNA .My last baby

almost starved to death as a result of a dr not listening Gabrial doesn't

have cf but he did have 3 sweat tests(he couldn't sweat enough he was a

preemie) he had severe refluxcommon in preemies he also had his lungs

collapsed at birth.I hope the tests help get the answer you need.Best wishes

BeckyB.

[Guest guest]

Hi Michell W

Wow you said it right here:

'I have realized that I am my child's advocate-- I have to

demand answers because there is no one else to speak for him.'

You have had a lot to struggle with .......... and wow, you are doing a

great job! You, in my opinion, are absolutely correct in asking for further

testing. The sooner you know the diagnosis, the better. Hang in there.

Try to be patient (especially with the doctors).

Cheri B., Mom to 8yo invitro baby wcf & Christian 3yo adopted nocf,

both Gifts from Heaven!

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[Guest guest]

Hi Michell W

Wow you said it right here:

'I have realized that I am my child's advocate-- I have to

demand answers because there is no one else to speak for him.'

You have had a lot to struggle with .......... and wow, you are doing a

great job! You, in my opinion, are absolutely correct in asking for further

testing. The sooner you know the diagnosis, the better. Hang in there.

Try to be patient (especially with the doctors).

Cheri B., Mom to 8yo invitro baby wcf & Christian 3yo adopted nocf,

both Gifts from Heaven!

-------------------------------------------

Introducing NetZero Long Distance

Unlimited Long Distance only $29.95/ month!

Sign Up Today! www.netzerolongdistance.com

[Guest guest]

Hi Michell W

Wow you said it right here:

'I have realized that I am my child's advocate-- I have to

demand answers because there is no one else to speak for him.'

You have had a lot to struggle with .......... and wow, you are doing a

great job! You, in my opinion, are absolutely correct in asking for further

testing. The sooner you know the diagnosis, the better. Hang in there.

Try to be patient (especially with the doctors).

Cheri B., Mom to 8yo invitro baby wcf & Christian 3yo adopted nocf,

both Gifts from Heaven!

-------------------------------------------

Introducing NetZero Long Distance

Unlimited Long Distance only $29.95/ month!

Sign Up Today! www.netzerolongdistance.com

[Guest guest]

You are right-- patience is the key, but we have seen so

many doctors. Many of them have just said " Wait and see " --

would they wait and see if it was their child? I get so

frustrated-- I have been treated like I am over reacting.

Have others had this experience? The first time we went to

the er at 2:00 am the nurse asked me if he was my first

baby- what difference does that make? I have 3 other

children so I realize babies breath funny sometimes-- she

would not believe that he had quit breathing because his

sat was 94-- it would be much lower she said if he had

quit breathing. I knew that was not true-- we are 30

minutes from the hospital. Needless to say, after several

similar and worse visits to this hospital I now go

elsewhere. The last visit there his sat was 89(he was on

oxygen and had been for 45 minutes and it was still only

89)-- she used 3 different machines (yes same nurse) and

said she didn't think any of them were working right

because last time he had been there his sat was not that

low?? Then they put him in a back room on oxygen to

observe him for awhile (2.5 hours later nobody had came

back in to look at him, so I went out and found the

nurse.) She refused to call my pediatrician (at a different

hospital) because my baby wasn't in danger. I went to the

phone in the lobby and called my pediatrician, who called

the er and had my baby transported to his hospital (he

was there for 4 days) I heard that nurse telling the

ambulance driver (for the transport) that he needed to be

transported because he was coughing and gagging-- then she

laughed! At that time we did not have the apnea monitor

yet, I had not slept in weeks and I had lost patince

with her. I filed a complaint with the hospital and with

the state about my treatment at that er. We have had

whooping cough, RSV and so many other tests because of his

cough-- so I do not understand why the reluctance to do

the DNA test? These doctors have not stayed educated-- they

are still in the mindset that the sweat test is, as they

have told me, the " gold standard " for cf testing. Patience

is in short supply after months of dealing with physicians

and nurses that have been working for 30 years and never

kept current with their medical knowledge.

> Hi Michell W

> Wow you said it right here:

>

> 'I have realized that I am my child's advocate-- I have

to

> demand answers because there is no one else to speak for

him.'

>

> You have had a lot to struggle with .......... and wow, you are

doing a

> great job! You, in my opinion, are absolutely correct in asking

for further

> testing. The sooner you know the diagnosis, the better. Hang in

there.

> Try to be patient (especially with the doctors).

>

> Cheri B., Mom to 8yo invitro baby wcf & Christian 3yo

adopted nocf,

> both Gifts from Heaven!

>

>

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

> Introducing NetZero Long Distance

> Unlimited Long Distance only $29.95/ month!

> Sign Up Today! www.netzerolongdistance.com