yet another test..does it ever end

[candiebar76]

Yet another appointment new Dr. different recommendations. Maxwell was seen by an ENT sleep therapist today. He has a sleep therapy evaluation on the 26th of June. This Dr. flat out said I do not know a lot about treating CF, but I have been trained to spot signs and the Allergist is on the right track. "I am ordering more test to help with the diagnosis, but with the unusual circumstances with Max I can tell you right now that I will read them and then will refer you to Denver Children's hospital.

Maxwell's sinus' are clearing up but questions from the Dr. like "when did he have tubes in his ears?" (Never) Have left even the Dr. baffled. The "allergic shiners" under his eyes when he has no allergies. The sinus' flushes are expelling the build up in the sinus', but the underlying problem is yet to be figured out. The Dr. today has ordered a no contrast CT scan of the sinus' to find out the "shiner" part. He said it will be one step closer to diagnosis of the CF and lead us in the right direction.

Candace-facing the possibility of having a child diagnosed w/CF

Finding the answer is what is hard. A diagnosis will be a relief no matter what the outcome!

 

[Jem]

I hope you find out soon. Hang in there! <img src="i/expressions/heart.gif" border="0"> & Prayers

 

[Mockingbird]

I live in Denver. Though I have never been to the children's hospital, I have heard it is excellent. Perhaps you can tell your doctor to just do a sweat test and get done with it already. He probably doesn't know how, though, so tell him to send you off to Denver Children's and have them do a sweat test. That will be a lot quicker than messing about with the sinuses.

<b>Edit:</b> ooops, sorry. i didn't see your previous posts! Anyway, I'll say a prayer.

 

[Seana30]

I was told by Courtney's gastro doc that the BEST CF clinics are in Denver.

Candace....I feel for you! It took 4 years of searching for a doc that would listen to me to finally get Courtney diagnosed. Once we got a doc to listen it took about 2 months to finally get the diagnoses. Courtney was 10 years old when we finally found out she had CF.

You and your family and in my thoughts!!

Seana

 

[candiebar76]

<div class="FTQUOTE"><begin quote>I feel for you! It took 4 years of searching for a doc that would listen to me to finally get Courtney diagnosed. Once we got a doc to listen it took about 2 months to finally get the diagnoses. Courtney was 10 years old when we finally found out she had CF. </end quote></div>

Why is it that doctors are missing such a big thing? I look at signs and symptoms on several sites over & over. Everything just keeps playing in my head. The memories of him in the hospital, what I must have looked like when the Dr. said had I waited any longer he would not have lived.. The constant infections, illnesses, etc. Why is it so hard to get Dr's to listen. Nobody knows a child like their mother, yet evryone just goes by the book. Sometimes the book isn't right! Thank you for the encouragement.

Candace & Bill
3 children perfectly healthy (as far as we can tell)
1 waiting for a diagnosis of some sort.