Re: Now even MORE confused...HEEEEELLLLPP

[Guest guest]

They are treating him for asthma and allergies but are still considering

cystic fibrosis, apparently having discarded his highest sweat chloride

test.

Most with asthma do NOT have significant gastrointestinal problems!!!!!

Are these people nuts! Let us hope that his next appointment is soon!

With highest hopes and a dose of suspicion of their ignorance,

Love,

n Rojas, wcf

Now even MORE confused...HEEEEELLLLPP

> Ok.. Jordan's sweat chloride tests have been 80,58,57, & 39. We go

> back to Columbus mid Jan. I got a letter from them today and this

> is how it reads. I dont understand this stuff!!!!!!

>

> " Cultures grew: Staphyloccus aureus(this has grown on EVERY one they

> have done so far)

>

> Medications include: Aerosols of Flovent 110mcg 2 puffs twice daily

> with spacer and Albuterol(Xopenex), and other medications of Zyrtec,

> 1 tsp every night, Singulair, 4mg packet every morning, Zantac, 4ml

> twice daily, and Rhinocort, 1 spray each nostril once daily at

> bedtime.

>

> Exam showed weight of 13.7 kg, height of 90.5 cm, temperature of

> 97.2, pulse rate of 105, respiratory rate of 30 and blood pressure

> of 89/73. nasal and throat symptoms are absent. Chest symptoms are

> absent. GI symptoms are controlled. HEENT exam revealed no acute

> abnormality. Thorax was normal. Chest exam showed no

> abnormalities. Other pertinent findings were not present.

> Additional testing performed at the time included a sweat chloride

> which was 39. Our overall impression is that we are pleased with

> his progress. He has had borderline sweat chlorides of 58,57, and

> 39. We are working to establish or rule out the diagnosis of CF.

> We will repeat a sweat chloride on both arms at his next visit. "

>

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

> OK...now they are going to test both arms? Separtely or at the same

> time? Why test both arms? Why is Staph always growing on his

> cultures? Why are they saying he's borderline CF? ARGH someone

> please try and help me here! :(

> Rhonda

>

>

>

>

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

> 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.

>

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

>

>

>

[Guest guest]

Dear Rhonda,

Have they suggested a genetic test? I think that would be the next step, I don;t

see the point of doing more sweat tests either. The one in the 80's is

definitely positive and the high 50's is close enough, I'd think. Ask them to

do the Ambry test, it screens for over 1000 cf mutations and we just recently

got a positive for cf from them for our daughter. Although now they want my

husband and myself to be tested to make sure the mutations are on different

chromosomes or something like that. by the way, if anyone understands this,

please explain if you can.

Anyway, I hope this helps you Rhonda!

love,

M

[Guest guest]

There is another test that a company called Ambry does and they check for over

1000 mutations. that one is the only one which finally found my daughter's rare

mutation. Ask about it.

good luck,

love,

[Guest guest]

> Ok.. Jordan's sweat chloride tests have been 80,58,57, & 39. We go

> back to Columbus mid Jan. I got a letter from them today and this

> is how it reads. I dont understand this stuff!!!!!!

It is very strange how the sweat cloride tests are all going down

over time.

If you can talk them into a genetic test, I would do so. My son had

sweat tests all in the range of 58-62. We ended up with two genetic

test .. the Genzyme caught the common mutation and second (Ambry)

found the second mutation to clinch the diagnois. His second mutation

is rare and known for having inconclusive sweat chloride values.

jan