when should I second guess a Dr.?

[candiebar76]

I was doing research on webmd about the current meds our Dr. has our son on yesterday. He was tested for allergies and had none yet the doctor gave him more perscription allergy meds. As I was looking it up (Nasonex) the dr. has perscribeb my son twice the normal/known safe dosage for a child his age. It also stated the spray is used to shrink polyps at this dosage for adults over 18. I feel the dr. isn't telling me everything or is giving the meds just because at wrong dosage amounts. Also the oral dallergy is used for allergies and sometimes colds and lung infections none of which my son appeared to have at the time all this stuff given to us the oral med again was twice the amount for a child of his age and size. The only thing I feel comfortable giving him is the sinus flush because it is just a saline solution. I am begining to think this Dr. is a quack and my son's health is being jepordised even more. Am I loosing my mind, should I trust the Dr. or the info about the meds?
Candace

 

[CFHockeyMom]

One of the mistakes we made early on with Sean was misunderstanding why he was on a particular med. Sometimes in the case of CF drugs aren't being used for the traditional indications. For example, we had decided that Singulair wasn't for Sean. He had no asthmatic symptoms so why give him more drugs than he needed. Well, we eventually asked the Dr. about why we should give it to him and she explained that it acts as an anti-inflamatory. Duh! Now we make sure Sean is on Singulair. When Sean was first diagnosed with CF @ 12weeks old, Pulmozyme hadn't yet been approved for children under 6, yet he was on it anyway to try and improve his health at the time. He was also on inhaled Tobramyacin which, at that point in time, TOBI hadn't even been developed. Sean is on Nasonex now; not for allergies but nasal polyps. I guess my point is, you should ask your Dr. why he's perscribed the med. Most mainstream drug reference material doesn't include "special cases" like CF. Also remember that every Dr. treats CF a little differently based on their own experiences and knowledge.

Is your Dr. a CF Dr. at a CF clinic?

 

[anonymous]

You should trust your instincts - just as they led to the CF diagnosis. Last I heard they weren't sure it was CF in your son yet but that one gene had been found and that he had all the symptoms. My memory could serve me wrong and I apologize if this is the situation. Either way, CF or not seeing a CF doctor wouldn't hurt and then at least the doctor would be treating him with meds/dosages relevent to CF.

I think you should be going to a CF doctor. Just an FYI, in case you don't already know this, CF doctors never just do CF (at least not in most cities) they are either a pediatrician or pulmonologist as well because there are not enough of us CFers out there for them to make a living on our disease alone. With your son having so many CF symptoms even if it's not CF those doctors will have such knowledge of the med's, etc. that they will probably be the best treatment until a different diagnosis is given.

When I was little my mom tried to keep a relationship with a local GP as well as my CF clinic which was a 2 hrs. drive. She had her first hard lesson when she followed the GP advice and gave me penecillin for an infection regarding mucus. A few days later when the CF clinic had been notified they promptly told my mom that she needed to get me on another medicine and to stop penecillin because it wouldn't do anything for my CF flare up.

LouLou 27f w cf - not signed in

 

[candiebar76]

We haven't got the results of the DNA test it was done today. So we don't know plus they are only testing the 36 most common. Our Dr. is not a CF Dr., our insurance will not let us take him to a CF Dr. with out more results. The SWCL level at 49 isn't enough because the family history thing. Even though Maxwell has had many of the health problems related to CF.
Candace

 

[anonymous]

DS had an allergic reaction of some sort a couple of years ago. We suspect it was from mosquito bites -- he developed a red rash and had a bit of a wheeze. We took him to the walk in clinic because his daycare was concerned he had chicken pox. DH came home with zyrtec, prenisol (liquid prednisone) and some topical ointment. I called our CF doctor in the city about the prednisol 'cuz I remembered something about CFers and that med and he said absolutely NOT. DS was too little and it could affect his blood sugar levels. At some point he might need that medication later on in life, but was very concerned that it was prescribed to such a young child for such a minor symptom. One dose of zyrtec did the trick.

Sometimes I get a little edgy when a new drug is prescribed 'cuz I always get out the patient literature and read up on it or look it up on the internet. Lots of times they indications aren't for children under the age of 6 or in the case of cipro last spring, under the age of 18.

And medications for cfers are used differently. Zithromax for inflammation, not necessarily as an antibiotic.

I too would suggest a CF doctor. A friend of mine had a teenage daughter with an undiagnosed lung ailment -- interstitial lung disease. Had tons of testing, but never could determine the cause. The began going to CF clinic at U of MN for treatment even though the diagnosis was never clear. Their child did much better -- fewer sick days off from school, fewer hospitalizations, etc. Liza aka ratatosk

 

[anonymous]

Our insurance will only cover in network medical providers and we have to pay a higher copay, higher percentage of charges if we go out of network. We can't get a referral to an accreditted CF clinic because BCBS considers the medical care in town adequate, as does the referring clinic. So 2-4 times a year, we go 250 miles away to an accredited facility. We feel it's well worth the costs. We realize at some point we're going to have to get a referral, but will most likely have to obtain an attorney to make any leeway.

 

[anonymous]

I am never shy about asking my son's pediatrician and CF doctors why the are prescribing something and I've often made specific questions like yours when I read something that scares me about the medicines. They've always been willing to discuss or explain and a couple times ended up deciding to forgo a particular medicine and keep an eye on things or use something else. I know that not all Dr.s are as good as mine about dealing with assertive patients/parents - I think it helps by framing the questions / concerns so that they feel like you're asking to be educated rather than like you're trying to educate them. Usually I just tell them that when I read the prescribing/side effects information about the medicine it made me worried about "x" and can they tell me what they think about it...

 

[candiebar76]

<div class="FTQUOTE"><begin quote>Our insurance will only cover in network medical providers and we have to pay a higher copay, higher percentage of charges if we go out of network. We can't get a referral to an accreditted CF clinic because BCBS considers the medical care in town adequate, as does the referring clinic. So 2-4 times a year, we go 250 miles away to an accredited facility. We feel it's well worth the costs. We realize at some point we're going to have to get a referral, but will most likely have to obtain an attorney to make any leeway. </end quote></div>
Ultimately that is what we will do. Thankfully our CF clinic is only 100 miles away. We have finally located all of his medical records and aside from each Dr. charging to get them sent dirrectly to us we are prparing to go see the CF clinic. We want to wait for the records so we have all our ducks in a row. That way there is no question as to what his health has been in the past. I read every post on this forum and with what I have learned (things like Max has not had a lung infection in 2 1/2 years) seem rather normal and or lucky as the case may be. We had kind of slacked of for a while because of the sinus stuff and with that we never knew because it was always there. He just delt with it and life went on. Now that we know I have gone back into my proactive state and will not stop until every possible thing is explored! I have a feeling we have found our answer and although it may be a tough one we will deal with it as possitive as possible. My "gut" instinct tells me we have found our answer and it may be a difficult one, but we are happy that we are so close to having it. I just find it odd that since he was a baby our meds have been treated like with this Dr. I have to question why because if CF is the answer why did they treat him like he had it but gave no indication to us and never tested before now.
Sorry so long.
Candace

 

[anonymous]

Candiebar, my ds does not have cf. He has many characteristics of cf. Asthma, chronic sinusitis (1st sinus surgery at 4 and has needed a 2nd one since only months after the first), repeated pneumonia, dropped from top of growth chart to bottom in 1-1/2 yrs although he now maintains at the 5-10%. He's been on antibiotics rougly 60 times (including 1 round of IV) in just over 8 years. The first several years were the worst. Anyway, ds's sweat test was neg but all drs felt like there was a good chance he still had cf (pulmo, a/a, ENT) so they did the gene test for 87 mutations - all neg so he's considered neg (my sister is now due with a baby who has echogenic bowel and they assume her baby is neg because my sister tested neg to a carrier test of 36. We'll see if that all changes when the baby's born). Anyway, my ds does have allergies, asthma, and chronic sinusitis. Because of the chronic sinusitis he has been on nasal steroid sprays for years. He started on rhinocort aqua one spray each nostril twice a day but is now on nasonex twice a day. He was 3 when he started rhinocort. At the beg of his treatment, he tested negative for ALL allergies, 2 years later, he tested positive for a bunch of allergies. Nasonex is not just used for allergies, it's used for polyps and inflammation/swelling in the nostrils. It really does help. The antihistamines I'd be a little more leery about using without known allergies because they can dry out the mucous and cause worsening of the sinusitis but I wouldn't worry about the steroid spray. I do have a question for you. What happens if the 36 carrier test is negative? Will your insurance pay for additional testing or will he be considered negative?? I ask because our insurance will not pay for Ambry or the Quest extended panel for our peace of mind even though the Genzyme panel even stated that if the child still had characteristics, we should have the Ambry extended panel. Just wondering if yours is the same way? Good luck, I hope you get answers soon.

 

[candiebar76]

<div class="FTQUOTE"><begin quote>What happens if the 36 carrier test is negative? Will your insurance pay for additional testing or will he be considered negative?? I ask because our insurance will not pay for Ambry or the Quest extended panel for our peace of mind even though the Genzyme panel even stated that if the child still had characteristics, we should have the Ambry extended panel. Just wondering if yours is the same way? Good luck, I hope you get answers soon. </end quote></div>
Thus far our insurance has been somewhat willing to do what they can. My husband is employed at UPS so our benefits are pretty good. If we push the issue and the PCP will refer us to Children's (CF Dr.) and he finds reason to do it they are likely to approve it. I envision the insurance company having a list of people they classafy as the members not to mess with and I am on that list. If the CF Dr. finds reason to do the extended panel and insurances refuses we go in front of the UPS panel and they can force the insurance if they don't UPS offers us attornys to fight it and if all else fails we go to the Federal Department of Labor as we already have a contact there. We have had issues in the past dispite what UPS told the insurance to do and that is how we got it resolved. They don't like us much for it, but they can't do anything about it.
Candace