fighting for help

[McBaby]

My daughter is 9 1/2 months old now and she had a negative CF in her state screening. She's been sick frequently and every time I take her to urgent care or the ER, the doctor's suggest CF. My pedi insists that she's not CF, as she had a negative state screening. DD caught a cold when she was 3 weeks old that lasted about 2 weeks (standard saline/suction routine). At 3 1/2 months, RSV. Since the RSV, she's had bronchiolitis recurring about every 3 weeks. Sometimes 2. She's had confirmed pneumonia two times, atelectasis three times. She has dual ear infections each time she gets sick (we've not had any of these illnesses occur without ear infection. She has had clogged tear ducts since birth and we have an appointment with an opthamologist in 5 weeks, where we expect to have them scoped. She now has another ear infection (the third one in 6 weeks, 2 occurances of bronchilitis in the same 6 weeks) that has resulted in a perforated ear drum (her second perforated). In addition, she's had an active c diff infection since she was about 4 months old, so every time she's on antibiotics she also has to go on metronidizol to prevent the c diff from getting worse.
I don't want to sound awful, but my mother's instinct tells me there is something going on that is leading to all these infections and illnesses. EVERY visit we make to a doctor that is not my pedi suggests CF to us. My pedi has been resistant on it, and doesn't think it's necessary to test further because she doesn't present standard CF and had the negative state screening.
I've made an appointment with a pulmonologist to see if they can help us further, without having a referral, so they won't get us in very soon (not until May).
I guess I'm curious... am I barking up the wrong tree with pushing my pedi to do further tests before we see the pulm? I hate feeling like I'm persuing something that the pedi says no to, but it's troubling to me that when other doctor's (always through our Children's Hospital network), they ALL mention CF. I'm routinely asked questions about if she was premature (she wasn't) and if we've had sweat tests or genetic testing to rule it out (which we haven't).
So, I'm wondering, has anyone here had to fight with their doctor's to get further help? If you did, was the negative screening wrong? What questions do I need to ask the pedi and the pulm? I just want to help my child as much as possible. They now think she's resistent to the amoxicyllan they've given for the ear infections. Additionally, we've had so many antibiotics prescribed in the past month that my insurance is now denying covering the current antibiotic as I guess I've met some kind of max for the month. They won't cover filling it for another 5 days! That makes battling this kind of health issues even more frustrating since I do have pretty good private insurance coverage.
I'd really appreciate any help or advice you all may have. I realize that she doesn't have a CF diagnosis, but I want to be armed with information if I need to push my pedi or change pedis. Thank you in advance for any input you may have!

 

[McBaby]

My daughter is 9 1/2 months old now and she had a negative CF in her state screening. She's been sick frequently and every time I take her to urgent care or the ER, the doctor's suggest CF. My pedi insists that she's not CF, as she had a negative state screening. DD caught a cold when she was 3 weeks old that lasted about 2 weeks (standard saline/suction routine). At 3 1/2 months, RSV. Since the RSV, she's had bronchiolitis recurring about every 3 weeks. Sometimes 2. She's had confirmed pneumonia two times, atelectasis three times. She has dual ear infections each time she gets sick (we've not had any of these illnesses occur without ear infection. She has had clogged tear ducts since birth and we have an appointment with an opthamologist in 5 weeks, where we expect to have them scoped. She now has another ear infection (the third one in 6 weeks, 2 occurances of bronchilitis in the same 6 weeks) that has resulted in a perforated ear drum (her second perforated). In addition, she's had an active c diff infection since she was about 4 months old, so every time she's on antibiotics she also has to go on metronidizol to prevent the c diff from getting worse.
I don't want to sound awful, but my mother's instinct tells me there is something going on that is leading to all these infections and illnesses. EVERY visit we make to a doctor that is not my pedi suggests CF to us. My pedi has been resistant on it, and doesn't think it's necessary to test further because she doesn't present standard CF and had the negative state screening.
I've made an appointment with a pulmonologist to see if they can help us further, without having a referral, so they won't get us in very soon (not until May).
I guess I'm curious... am I barking up the wrong tree with pushing my pedi to do further tests before we see the pulm? I hate feeling like I'm persuing something that the pedi says no to, but it's troubling to me that when other doctor's (always through our Children's Hospital network), they ALL mention CF. I'm routinely asked questions about if she was premature (she wasn't) and if we've had sweat tests or genetic testing to rule it out (which we haven't).
So, I'm wondering, has anyone here had to fight with their doctor's to get further help? If you did, was the negative screening wrong? What questions do I need to ask the pedi and the pulm? I just want to help my child as much as possible. They now think she's resistent to the amoxicyllan they've given for the ear infections. Additionally, we've had so many antibiotics prescribed in the past month that my insurance is now denying covering the current antibiotic as I guess I've met some kind of max for the month. They won't cover filling it for another 5 days! That makes battling this kind of health issues even more frustrating since I do have pretty good private insurance coverage.
I'd really appreciate any help or advice you all may have. I realize that she doesn't have a CF diagnosis, but I want to be armed with information if I need to push my pedi or change pedis. Thank you in advance for any input you may have!

 

[Printer]

I have two suggestions. First call an APPROVED CF CENTER, tell them your story and let them call your primary for a referral. Second, when your child has a flare up, go to the hospital ER where your nearest APPROVED CF CLINIC is located. The attending will, with your assistance, call the CF department for a consult.

In the mean time, change your pedi.

Good luck,
Bill

 

[Printer]

I have two suggestions. First call an APPROVED CF CENTER, tell them your story and let them call your primary for a referral. Second, when your child has a flare up, go to the hospital ER where your nearest APPROVED CF CLINIC is located. The attending will, with your assistance, call the CF department for a consult.

In the mean time, change your pedi.

Good luck,
Bill

 

[McBaby]

Thank you, my plan of attack was the next occurrence she gets of wheezing is to bypass going to the pedi's office and head straight to the ER. The last time we went in, they told me that they wouldn't bring a specialist unless she was admitted and they didn't find her symptoms of pneumonia severe enough to admit. Instead they prescribed a nebulizer to use at home (we've had an aero chamber device since she was 4 months old).

I was just reading another post and hadn't occurred to me that her low weight could be a sign, too. She's under the 5th percentile and was born at 25th percentile. The pedi says it's not too alarming. A few months back, she had fallen off the chart, but gained it back up once she recovered in a week.

Is weight a significant factor in CF as well?

 

[McBaby]

Thank you, my plan of attack was the next occurrence she gets of wheezing is to bypass going to the pedi's office and head straight to the ER. The last time we went in, they told me that they wouldn't bring a specialist unless she was admitted and they didn't find her symptoms of pneumonia severe enough to admit. Instead they prescribed a nebulizer to use at home (we've had an aero chamber device since she was 4 months old).

I was just reading another post and hadn't occurred to me that her low weight could be a sign, too. She's under the 5th percentile and was born at 25th percentile. The pedi says it's not too alarming. A few months back, she had fallen off the chart, but gained it back up once she recovered in a week.

Is weight a significant factor in CF as well?

 

[dbsholes]

Yes - weight is a HUGE factor in CF. That's the reason I was diagnosed at 8mos in 1967. It's called "failure to thrive". Our inability to absorb the nutrients we consume means that we pass the food - largely undigested - right through our systems. This means that a second symptom is present: bulky, foul-smelling stools. What's going on in her diapers? Also, the simplest of all, does her skin taste salty? From what I can tell, the position your Pediatrician is taking is inexcusable. Is he offering any other options? Is he testing for anything else?? Find someone to test her. And definitely find a new Pediatrician if possible!
As always with new parents and "potential parents" - feel free to call me at 303-882-6070. This stuff is simply too complex to talk about only in writing.
Best, David Sholes Bennington Vermont

45yo male; DDF508; CFRD since '04; PFTs in mid 80s (could be higher but I'm in a lazy stage of life). Currently OVERWEIGHT at 5-10 185 pounds and needing to lose 20-25 pounds. So wierd.

 

[dbsholes]

Yes - weight is a HUGE factor in CF. That's the reason I was diagnosed at 8mos in 1967. It's called "failure to thrive". Our inability to absorb the nutrients we consume means that we pass the food - largely undigested - right through our systems. This means that a second symptom is present: bulky, foul-smelling stools. What's going on in her diapers? Also, the simplest of all, does her skin taste salty? From what I can tell, the position your Pediatrician is taking is inexcusable. Is he offering any other options? Is he testing for anything else?? Find someone to test her. And definitely find a new Pediatrician if possible!
As always with new parents and "potential parents" - feel free to call me at 303-882-6070. This stuff is simply too complex to talk about only in writing.
Best, David Sholes Bennington Vermont

45yo male; DDF508; CFRD since '04; PFTs in mid 80s (could be higher but I'm in a lazy stage of life). Currently OVERWEIGHT at 5-10 185 pounds and needing to lose 20-25 pounds. So wierd.

 

[Anomie]

My daughter passed state screening and was just diagnosed CF in September. All testing is sucseptible to false positives/negatives. The only way to be sure is to get the full genetic screening. If your child has CF then they need to be getting the proper treatments as soon as possible to avoid causing permanent damage like bronchiectasis and chronic pseudomonas infection.

 

[Anomie]

My daughter passed state screening and was just diagnosed CF in September. All testing is sucseptible to false positives/negatives. The only way to be sure is to get the full genetic screening. If your child has CF then they need to be getting the proper treatments as soon as possible to avoid causing permanent damage like bronchiectasis and chronic pseudomonas infection.

 

[McBaby]

They haven't classified her as failure to thrive, and apparently my pedi's office uses a different measurement than the hospitals do. I don't know what the thinking is. I've had hospital doctor's tell me here weight is FTT, but the pedi says, no, just low weight. Her stool is really hard to classify because of the c diff. She has MASSIVE blowouts, every time. We always have to change her outfits when she poops. They are usually very runny and tend to be flaky (typical with c diff). She's breastfed, so that lends to soft stool. I wouldn't say that her stool is that foul smelling at all. Even with introducing solids, she always has runny liquid stools. And as to her skin tasting salty, that's questionable. My husband doesn't think it does, I think so. But then I wonder if it's because I have it in my head that it would taste salty if it was CF. I've never seen any health care staff taste her, and my mom looked at me cross eyed when I asked her to lick her.

The pedi was willing to do the sweat test but told me she thought it wasn't going to yield positive. She thinks there is something going on, but thinks its ridiculous to call it CF.

I've called our nearest hospital with pediatric CF care and left message for the nurse to call me, but she's never returned my call (I've left three messages). I called the clinic again and they told me the nurse usually only responds to current patients. So I guess I have to wait until I get in with the pulm or push to have her admitted to the hospital next ER visit.

To top it all off, my employer has been giving me a hard time about taking off for her care, so that's posing an additional level of stress to the situation. So annoying.

Thank you kindly for your help! I greatly appreciate it. I'm going to push. I feel relieved to know that I don't sound off my rocker with pushing harder.

 

[McBaby]

They haven't classified her as failure to thrive, and apparently my pedi's office uses a different measurement than the hospitals do. I don't know what the thinking is. I've had hospital doctor's tell me here weight is FTT, but the pedi says, no, just low weight. Her stool is really hard to classify because of the c diff. She has MASSIVE blowouts, every time. We always have to change her outfits when she poops. They are usually very runny and tend to be flaky (typical with c diff). She's breastfed, so that lends to soft stool. I wouldn't say that her stool is that foul smelling at all. Even with introducing solids, she always has runny liquid stools. And as to her skin tasting salty, that's questionable. My husband doesn't think it does, I think so. But then I wonder if it's because I have it in my head that it would taste salty if it was CF. I've never seen any health care staff taste her, and my mom looked at me cross eyed when I asked her to lick her.

The pedi was willing to do the sweat test but told me she thought it wasn't going to yield positive. She thinks there is something going on, but thinks its ridiculous to call it CF.

I've called our nearest hospital with pediatric CF care and left message for the nurse to call me, but she's never returned my call (I've left three messages). I called the clinic again and they told me the nurse usually only responds to current patients. So I guess I have to wait until I get in with the pulm or push to have her admitted to the hospital next ER visit.

To top it all off, my employer has been giving me a hard time about taking off for her care, so that's posing an additional level of stress to the situation. So annoying.

Thank you kindly for your help! I greatly appreciate it. I'm going to push. I feel relieved to know that I don't sound off my rocker with pushing harder.

 

[Printer]

I really would find a new Pedi, TODAY.

 

[Printer]

I really would find a new Pedi, TODAY.

 

[dbsholes]

After reading up on c diff - I agree that the intestinal symptoms your daughter is experiencing could be explained by that condition. However, for a pediatrician to refuse to rule out all obvious potential causes of this situation is highly irresponsible - borderline physician incompetence. I agree with Printer, above, that you find a new Pediatrician immediately.

Salty does tend to be relative. It was easier 100 years ago, when we didn't have as much salt added to all our foods, for a parent or grandparent to identify salty skin on a baby (that was almost always destined to die young). Don't worry, treatments have come a long way, but you do have to find out for sure what's going on. And no, I'd be surprised if anyone in the medical profession actually tasted her - that would be considered unprofessional and subjective. A sweat test is certainly indicated, but as Anomie said, the only way to diagnose cf beyond a doubt in this day and age is a genetic screening.

Keep fighting. And welcome to the wonderful world of healthcare in "the best country in the world".

David Sholes

 

[dbsholes]

After reading up on c diff - I agree that the intestinal symptoms your daughter is experiencing could be explained by that condition. However, for a pediatrician to refuse to rule out all obvious potential causes of this situation is highly irresponsible - borderline physician incompetence. I agree with Printer, above, that you find a new Pediatrician immediately.

Salty does tend to be relative. It was easier 100 years ago, when we didn't have as much salt added to all our foods, for a parent or grandparent to identify salty skin on a baby (that was almost always destined to die young). Don't worry, treatments have come a long way, but you do have to find out for sure what's going on. And no, I'd be surprised if anyone in the medical profession actually tasted her - that would be considered unprofessional and subjective. A sweat test is certainly indicated, but as Anomie said, the only way to diagnose cf beyond a doubt in this day and age is a genetic screening.

Keep fighting. And welcome to the wonderful world of healthcare in "the best country in the world".

David Sholes

 

[seanyb719]

wow... we just went and had the sweat test done today and are awaiting the results. I didn't give our pediatrician a choice in the matter. Our daughter passed and then had an abnormal test on the second time. There was no way I was waiting 20 days for the next test results.

I'd be getting a new pediatrician straight away. Your pediatrician sounds irresponsible to me. Good luck and I hope you get everything resolved soon.

 

[seanyb719]

wow... we just went and had the sweat test done today and are awaiting the results. I didn't give our pediatrician a choice in the matter. Our daughter passed and then had an abnormal test on the second time. There was no way I was waiting 20 days for the next test results.

I'd be getting a new pediatrician straight away. Your pediatrician sounds irresponsible to me. Good luck and I hope you get everything resolved soon.

 

[McBaby]

Well, I had a lengthy conversation with the pedi yesterday. Headway was made!

We now have appointments for the following:
A gi, for recurring c diff infection, a bacteria of the intestines, that has shown resistance to antibiotic. we will likely have to have upper and lower gis done. C diff is quite complicated in infants.
An ent for recurring ear infections and perforated ear drums, likely resulting in tubes in her ears.
An opthamologist, for the blocked tear ducts. This will entail a procedure to scope the tear ducts into the sinuses and possibly put tubes in the ducts for drainage.
I'm hopeful we could have the two procedures done under one anesthetic.
We have a sweat test to see the response for cystic fibrosis. This is the precursor to the genetic testing, she wants to see the sweat test results before ordering the genetic testing.
We have an appointment with the pulmonologist to review the chronic lung infections, which include atelactasis, pneumonia, bronchiolitis, and frequent wheezing.
She said once we get through these, we will have additional tests that may include kidney and pancreatic tests, MRI and ct.scans.
And then, its likely we will need to see an immunologist. She told me she's much more concerned about her immunology rather than the possibility of CF. But she said we'll gather all of the above together before scheduling with the immunologist so that she can write a better report.

Yesterday, they started her on a twice daily inhaled (nebulized) steroid called pulmocort to try and build up her lung growth and hopefully try to prevent her getting severe and rapid infections. At the first sign of breathing issues, we have the albuterol to treat her with. We go for the sweat test on Thursday.

So, yay for some progress!

 

[McBaby]

Well, I had a lengthy conversation with the pedi yesterday. Headway was made!

We now have appointments for the following:
A gi, for recurring c diff infection, a bacteria of the intestines, that has shown resistance to antibiotic. we will likely have to have upper and lower gis done. C diff is quite complicated in infants.
An ent for recurring ear infections and perforated ear drums, likely resulting in tubes in her ears.
An opthamologist, for the blocked tear ducts. This will entail a procedure to scope the tear ducts into the sinuses and possibly put tubes in the ducts for drainage.
I'm hopeful we could have the two procedures done under one anesthetic.
We have a sweat test to see the response for cystic fibrosis. This is the precursor to the genetic testing, she wants to see the sweat test results before ordering the genetic testing.
We have an appointment with the pulmonologist to review the chronic lung infections, which include atelactasis, pneumonia, bronchiolitis, and frequent wheezing.
She said once we get through these, we will have additional tests that may include kidney and pancreatic tests, MRI and ct.scans.
And then, its likely we will need to see an immunologist. She told me she's much more concerned about her immunology rather than the possibility of CF. But she said we'll gather all of the above together before scheduling with the immunologist so that she can write a better report.

Yesterday, they started her on a twice daily inhaled (nebulized) steroid called pulmocort to try and build up her lung growth and hopefully try to prevent her getting severe and rapid infections. At the first sign of breathing issues, we have the albuterol to treat her with. We go for the sweat test on Thursday.

So, yay for some progress!