Re: Nervous about moving and B Cepacia

[Guest guest]

Were you dealing with the CF Care Center when you were in LA before?

If not, you should see a big difference. The CF Care Center here in

Ohio do a lot of preventative testing. It must be hard to leave

Hawaii, but Californina is beautiful too.

Take care,

Gale

> Hello,

> I'm very glad I found this chat bc I've never before heard of B

> Cepacia. Wy goes to CF Clinic sometime in the next couple of weeks

> and I definately have questions for his doc. Thing is, we are

> military (US Navy Seabees)and are leaving Hawaii to go back to

> California Dec 2nd. In Cali we have to go to LA Children's

Hospital.

> I loved my Dr there before and the nurses and dietician. They were

> great. Problem, Wyatt had this awful cough (he rarely ever coughs).

> He'd cough all night long and none of us ever stop. Initially we

> tried regular antibiotics for a cold and it helped. Two weeks after

> we were done the cough would return. Then they said it was his

> sinuses and allergies. We came here and I told my Dr we had a CT

scan

> done on his sinuses and we found out a week before leaving Cali he

> was allergic to Cat Dander so we gave our cat away before moving.

He

> still had this cough. First thing out of my Doc's mouth was has he

> been tested for PA. NO! I never heard the words! So he tested him

and

> what do you know he has it! After months of trying to get rid of it

> we called it a day and he is colonized w/ it now. So now I'm

nervous

> about going back to the same place that TOTALLY missed this

> diagnosis! I have no other choice of where to go, plus, it's

> considereed one of the best. So should I talk w/ someone at the LA

> Clinic and tell them what happened and my concerns? Should I ask

for

> a new doctor if his old one is still there? I don't know..

> Oh, and as far as the overeating thing... I hear you loud and

> clear. My husband and I both have gained weight and I'm currently

on

> Weight Watchers to lose it. So I have two versions of everthing in

> the house!

> Christy mom of Wyatt 7wcf and Hunter 2wocf

[Guest guest]

We live in . I'm sure that you are familiar with . My

husband works in Westerville. Abby, our Granddaughter, goes to

Children's Hospital in Columbus. Children's has been really great.

Example:

Abby has a number of tests on the 29th. Her Pulmonary clinic isn't

open for appointments on the 29th, but her doctor is making a special

trip in to see Abby. We didn't realise that the cf clinic was not

open on the 29th until a nurse mentioned it to us. Toni called to

make sure that she had recorder the correct day on her calandar and

was told that this is the only appointment scheduled at the cf clinic

on the 29th and it was per the doctor's request. Dr. Shell didn't

want Abby to make an extra trip to Children's.

Abby is also scheduled for an immunization shot on that same day.

Toni called to see if she could move the time of the immunization

appointment closer to the time of the other tests. They said, " We'll

just come up to the area that is doing the test and give her the

immunization there. " Wow! That's really nice.

We feel like the doctors at this CF Care Center REALLY care about

thier patients. Dr. Shell has a child close to Abby's age. Abby's

pediatrician has an office here in . Dr. Shell, Abby's

pulmonary doctor, sends a written summary of every one of Abby's

appointments at the cf clinic, to her pediatrician.

Maybe you will get transferred to Petterson AFB??? (probably

not since he's in the Navy) That would put you close to family.

Let us know how your move goes and good luck!

Gale

> > > Hello,

> > > I'm very glad I found this chat bc I've never before heard of

B

> > > Cepacia. Wy goes to CF Clinic sometime in the next couple of

> weeks

> > > and I definately have questions for his doc. Thing is, we are

> > > military (US Navy Seabees)and are leaving Hawaii to go back to

> > > California Dec 2nd. In Cali we have to go to LA Children's

> > Hospital.

> > > I loved my Dr there before and the nurses and dietician. They

> were

> > > great. Problem, Wyatt had this awful cough (he rarely ever

> coughs).

> > > He'd cough all night long and none of us ever stop. Initially

we

> > > tried regular antibiotics for a cold and it helped. Two weeks

> after

> > > we were done the cough would return. Then they said it was his

> > > sinuses and allergies. We came here and I told my Dr we had a

CT

> > scan

> > > done on his sinuses and we found out a week before leaving Cali

> he

> > > was allergic to Cat Dander so we gave our cat away before

moving.

> > He

> > > still had this cough. First thing out of my Doc's mouth was has

> he

> > > been tested for PA. NO! I never heard the words! So he tested

him

> > and

> > > what do you know he has it! After months of trying to get rid

of

> it

> > > we called it a day and he is colonized w/ it now. So now I'm

> > nervous

> > > about going back to the same place that TOTALLY missed this

> > > diagnosis! I have no other choice of where to go, plus, it's

> > > considereed one of the best. So should I talk w/ someone at the

> LA

> > > Clinic and tell them what happened and my concerns? Should I

ask

> > for

> > > a new doctor if his old one is still there? I don't know..

> > > Oh, and as far as the overeating thing... I hear you loud

and

> > > clear. My husband and I both have gained weight and I'm

currently

> > on

> > > Weight Watchers to lose it. So I have two versions of everthing

> in

> > > the house!

> > > Christy mom of Wyatt 7wcf and Hunter 2wocf