RESULTS ARE IN

[Ratatosk]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Alyssa</b></i>

<b>Liza</b> ~ so I'm curious is that girl going to get a blood test now that she knows your son has a negative sweat test?
</end quote></div>

I hope they do. She doesn't have problems with weight --- always been a big girl -- or bowel issues. She's apparently outgrown her asthma problems, though they have mentioned if she comes down with a cold, it tends to turn into something worse. L

 

[candiebar76]

Okay so at this point the thing that annoys me the most.. It has been 3 days since the Dr. that ordered the DNA test has gotten the results. Unlike with the SWCL test I had signed a waiver to get the results over the phone and pick them up in person in addition to having them faxed to the Dr. It took him 2 days to return my call with the results for the SWCL test (49 according to him is normal) and he hasn't called to discuss the DNA test results with me. He has not even called to talk about another plan of action and will not refer me to the children's hospital CF clinic so I can have the tests ran properly. Thank goodness the ENT that he refered us to is on the ball. He already called to set up a meeting for Friday (he wanted it ASAP) to review the results of the CTscan and sleep therapy evaluation. Unfortunately because the other Dr. gave Max a bunch of meds to help his sinuses the ctscan shows the mucos to be minimal at that time. Just as we were afraid of the masking of the symptoms. However, the ENT has looked over the reports and is taking everything into consideration. He had already told us he would run the tests that he felt were needed so we wouldn't have to make so many trips and then figure out what Dr. to send us to at Children's.
Candace

 

[julie]

Cancace,

I'm so sorry to hear that you seem to be running into a brick wall with this dr. Can I ask??? Is he your family practice/primary care Dr? If so, might you consider switching to someone else?

I'm glad the ENT is willing to run tests and get to the bottom of this. I hope that he/she will send you to a Dr. at childrens for another test. As far as the DNA testing, it's not imperative that it be run at a CF accredited facility because if it's the extended panel test, it's going to go to quest or ambry. But it would help to have it drawn at a CF accredited facility because they are familiar with doing this day in and day out.

When I had my CF carrier test done through Ambry, I just had my blood drawn by my primary care dr's office. I did have to do my own reserach first though and get all the paperwork ready to send to ambry and get the insurance stuff settled, because my primary care dr. had never done this before. But I got it done sooner than if I would have waited for a CF clinic appointment.

Best of luck, and please keep us posted.

 

[candiebar76]

<div class="FTQUOTE"><begin quote>Is he your family practice/primary care Dr? If so, might you consider switching to someone else? </end quote></div>

He is not our PCP. I had originally requested our PCP refer us to Children's but she sent us to this Dr. allergy/immunoligist and he is not very on the ball. I have called and left several messages asking why he gave my son allergy meds, & nasal sprays at double the reccomended doses when he has no allergies and the dosage for the nasal spray is for adults w/ polyps. He has yet to return the call. We are thinking about switching just Maxwell PCP to a General Pediatrician at childrens for Maxwell that way it will be easier to get the proper referals.
Candace

 

[julie]

I think that what you guys are thinking about doing (switching maxwell to a pcp at childrens) is a great idea!!!!!!!

Keep truckin Candace, we're all behind you!!!!

 

[Seana30]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Alyssa</b></i>



fugikitten</b> ~ have you done the nasal potential difference test? Our doctor mentioned that it can help "prove" CF if both the sweat test and DNA test cannot.</end quote></div>



We were flown all the way to North Carolina just to get the nasal potential difference test. I do not believe in this test at all!! They rolled in a cart and sprayed some fluid into Courtney's nose. The whole thing looked like a kid had put it together. It looked like a lie detector test.

I personally do not feel this test has been studied enough to count. Courtney's test came back inconclusive. I was a LONG trip, and we got no results out of it.

Seana

 

[anonymous]

Candace,
That's great news on the ct scan<img src="i/expressions/face-icon-small-smile.gif" border="0"> Actually, you don't have to worry about the meds "masking" the symptoms. If a med masks the symptoms, the child will not have as many symptoms but diagnostic tests such as a CT scan will reveal the true extent of the disease. Since the ct scan shows improvement, the meds must actually be working to reverse the disease. That's great news<img src="i/expressions/face-icon-small-smile.gif" border="0"> Nasal steroid sprays are one of the main methods of treating sinus & nasal inflammation. A good ENT, however, knows that CT scans can understate the extent of the disease and will look at the "whole" picture - clinical manifestation (ie symptoms) and results of testing. Have they tried a nasal endoscopy on Max yet? Sometimes that's helpful, too. It's just basically where they take a long flexible or rigid rod with a light at the end and insert it way up the nose, to the sinus openings so they can actually "see" into the sinus openings. It can be done in the office and in a cooperative child does not require sedation (just a numbing agent sprayed up the nose).

As far as the testing goes, just keep pushing. If your insurance or the cf center requires a referral and you can't get it from your current doctor, find a doctor who will give it to you and change. You're on the right track.

 

[candiebar76]

<div class="FTQUOTE"><begin quote>Have they tried a nasal endoscopy on Max yet? Sometimes that's helpful, too. It's just basically where they take a long flexible or rigid rod with a light at the end and insert it way up the nose, to the sinus openings so they can actually "see" into the sinus openings. </end quote></div>

They did this when Max was 3 years old (a little over 2 yrs ago, he was almost 4). The ENT (different one then we have now as I specifically said I did not want the same one) said "the build up/blockage in the sinues were due to his adenoids, they are causing 80% blockage & if we remove them it will be all better". Ha, we had them removed and for the first week he showed signs of improvement, but after about a month same old, same old. All they did was put him on rhinocort and zyrtec for 2 years and it didn't help at all. The nasal flushes twice per day and the nasonex is helping quit a bit, but for how long? (that is the newest treatment.) If we skip it for a day or two he starts complaining about his sinuses, which seems to be quick for it to come back.

They haven't done it since then. They just look in his nose and say blockage. Duh, here we go again.. more antibiotics that don't work, more apointments.. Granted we only have a $10 copay, but we are a one income household with 6 members and those copays add up. In the last month we have spent almost $500 in copays and transfers of medical records. I still feel like we are in the same spot as we have been for the last 6 years as far as Maxwell goes.. Up in the air w/ no answers and Dr.'s that don't care.

Candace