Sorry to go missing for so long- update on the kids!

H

hmw

New member
Thank you so much everyone. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Becca'smom, thanks for more input on the NO testing. It's interesting how much testing is available out there and I'll keep it in mind to ask about if we need to keep looking.

Christine, you are the only other person I've come across who has a child on Amitiza. I was so nervous about putting Emily on it due to all of the warnings against it's use in children etc but it really has done Emily so much good. And of course for the way it's prescribed for a 'typical' adult with bowel issues, it's completely contraindicated whenever obstruction is suspected- but our kids break the rules, you know?! Her GI feels that activating that chloride channel is really helping. Repeated xrays over the last year+ showed so much thickened stool in the small bowel, and nothing else we were doing was helping that. Emily was on Periactin at one time in the past but unfortunately she had a severe reaction to it.
 
H

hmw

New member
Thank you so much everyone. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Becca'smom, thanks for more input on the NO testing. It's interesting how much testing is available out there and I'll keep it in mind to ask about if we need to keep looking.

Christine, you are the only other person I've come across who has a child on Amitiza. I was so nervous about putting Emily on it due to all of the warnings against it's use in children etc but it really has done Emily so much good. And of course for the way it's prescribed for a 'typical' adult with bowel issues, it's completely contraindicated whenever obstruction is suspected- but our kids break the rules, you know?! Her GI feels that activating that chloride channel is really helping. Repeated xrays over the last year+ showed so much thickened stool in the small bowel, and nothing else we were doing was helping that. Emily was on Periactin at one time in the past but unfortunately she had a severe reaction to it.
 
J

JennifersHope

New member
Becca's Mom, what did the Nasal Pd show? I also had one done at UNC, which my old clinic used to undiagnose me with CF in spite of positive sweat tests, one known CF gene and one gene that that has never been described yet. They totally undiagnosed me based on that one test.

I was left floundering for about a year giving BS diagnoses of asthma, VCD and latex allergies.. I hung with them for a yar but last September I went to a new place, where I had my first culture done in over two years, I was culturing two different bacterias, my oxygen sats were in the 80's on exertion and come to find out my many many complaints about being tired, night sweats low grade fevers etc were directly related to MAC.

I recently emailed my old center to get a copy of the nasal PD because I need it and I was told that it was not done for clinical purposes buy for clinical trials.. Well that is not what they told me, they undiagnosed me based on that one test and took me off my CF medications.

I recently found out the the Nasal PD has been coming up more and more inaccurate. I am so frustrated with my old center and there are so many things I would like to say, but can not at this time. Believe me when I can, I will.

RIght now, after all I have been through, I am back on all my old CF medications including the vest, but it is an up hill battle since I essentiallt went an entire year really sick without any proper pulmonary care.

I am in a diagnoses limbo right now, but will have answers in the next month or so. Sorry to hi jack your thread Harriet.
 
J

JennifersHope

New member
Becca's Mom, what did the Nasal Pd show? I also had one done at UNC, which my old clinic used to undiagnose me with CF in spite of positive sweat tests, one known CF gene and one gene that that has never been described yet. They totally undiagnosed me based on that one test.

I was left floundering for about a year giving BS diagnoses of asthma, VCD and latex allergies.. I hung with them for a yar but last September I went to a new place, where I had my first culture done in over two years, I was culturing two different bacterias, my oxygen sats were in the 80's on exertion and come to find out my many many complaints about being tired, night sweats low grade fevers etc were directly related to MAC.

I recently emailed my old center to get a copy of the nasal PD because I need it and I was told that it was not done for clinical purposes buy for clinical trials.. Well that is not what they told me, they undiagnosed me based on that one test and took me off my CF medications.

I recently found out the the Nasal PD has been coming up more and more inaccurate. I am so frustrated with my old center and there are so many things I would like to say, but can not at this time. Believe me when I can, I will.

RIght now, after all I have been through, I am back on all my old CF medications including the vest, but it is an up hill battle since I essentiallt went an entire year really sick without any proper pulmonary care.

I am in a diagnoses limbo right now, but will have answers in the next month or so. Sorry to hi jack your thread Harriet.
 
B

Beccamom

New member
JennifersHope,
I sent you a PM. If I remember correctly your diagnosis was changed by the same pulmonologist that originally mis-diagnosed my daughter at the age of 1 with asthma.
 
B

Beccamom

New member
JennifersHope,
I sent you a PM. If I remember correctly your diagnosis was changed by the same pulmonologist that originally mis-diagnosed my daughter at the age of 1 with asthma.
 
H

hmw

New member
Oh that is just awful. It sounds like both of you have suffered a whole lot more than necessary due to this dr. My daughter went through some very bad experiences as a toddler/preschooler due to misdiagnosis (in her case it was a neurologist) and it became a dangerous situation before I was able to get her appropriate care with someone else. Some drs truly do not understand the power they hold over individual lives and just how enormous the repercussions can be. In Emily's case she now has permanent developmental disabilities due to inadequate care- we will never really be able to completely move on from what happened all those years ago.
 
H

hmw

New member
Oh that is just awful. It sounds like both of you have suffered a whole lot more than necessary due to this dr. My daughter went through some very bad experiences as a toddler/preschooler due to misdiagnosis (in her case it was a neurologist) and it became a dangerous situation before I was able to get her appropriate care with someone else. Some drs truly do not understand the power they hold over individual lives and just how enormous the repercussions can be. In Emily's case she now has permanent developmental disabilities due to inadequate care- we will never really be able to completely move on from what happened all those years ago.
 
J

JennifersHope

New member
Yes, it was the same doctor. I can't say too much especially until I get the final word on a few things. I really like the doctor that undiagnosed me, he is a nice guy. I just think he failed to do best by me by not doing cultures and not doing a few other things.

Even if the undiagnoses is correct, as a pulmonologist he should have at least have done a sputum culture with all the complaints I had.

I am now five months into doing seven IV infusions a day... and I can't help but feel if this was caught sooner, I would not be so bad off.. but that is neither here nor there.

He is a great CF doctor if you fit the typical CF mold, he was super great with his patients, very kind, very caring. I had a huge issue not with him, but with his partner, which was in the personal nature beyond anything it should have been and unfortunately that too effected my care.
 
J

JennifersHope

New member
Yes, it was the same doctor. I can't say too much especially until I get the final word on a few things. I really like the doctor that undiagnosed me, he is a nice guy. I just think he failed to do best by me by not doing cultures and not doing a few other things.

Even if the undiagnoses is correct, as a pulmonologist he should have at least have done a sputum culture with all the complaints I had.

I am now five months into doing seven IV infusions a day... and I can't help but feel if this was caught sooner, I would not be so bad off.. but that is neither here nor there.

He is a great CF doctor if you fit the typical CF mold, he was super great with his patients, very kind, very caring. I had a huge issue not with him, but with his partner, which was in the personal nature beyond anything it should have been and unfortunately that too effected my care.
 
J

JustDucky

New member
I feel bad for you guys as well....went through similar issues and have said this on many threads. I also don't fit the typical CF mold and was not treated adequately at one CF center, I was pretty much brushed off. Fortunately, I have found good care and am treated aggressively. I only hope that both of you finally get the care that you deserve..Jenn, I pray that Nat'l Jewish will have answers for you. I find it nuts that UNC undiagnosed you based on one NPD test even though you have the genetics and sweat tests that say otherwise. The fact that you are doing better on CF treatments tells me that they acted way too prematurely in your case.
Harriet, I am so sorry your family has had such a hard time....I really hope that your son bounces back soon and that Emily's GI system behaves.. Keeping all of you in my thoughts and prayers....

Hugs all around,
Jenn 40 w/CF
 
J

JustDucky

New member
I feel bad for you guys as well....went through similar issues and have said this on many threads. I also don't fit the typical CF mold and was not treated adequately at one CF center, I was pretty much brushed off. Fortunately, I have found good care and am treated aggressively. I only hope that both of you finally get the care that you deserve..Jenn, I pray that Nat'l Jewish will have answers for you. I find it nuts that UNC undiagnosed you based on one NPD test even though you have the genetics and sweat tests that say otherwise. The fact that you are doing better on CF treatments tells me that they acted way too prematurely in your case.
Harriet, I am so sorry your family has had such a hard time....I really hope that your son bounces back soon and that Emily's GI system behaves.. Keeping all of you in my thoughts and prayers....

Hugs all around,
Jenn 40 w/CF
 
J

JennifersHope

New member
UNC did not undiagnose me, my old CF center at MUSC undiagnosed me, UNC did the Nasal PD, Dr Donaldson did, I was never seen in their clinic, just the clinical trail building, so it is not fair to say they undiagnosed me. Come to find out over a year later that they had no intention of doing it to diagnose or undiagnose but as a clinical trial. I do not know, Thank God there are still good centers, with doctors that are open to a-typical cases of CF and hopefully they will get me a diagnoses. I am frustrated with my old center as they left me flopping in the wind with out trying to help me, culture me, or do anything really, all work was done on my own intiative. There is a lot more to the story, that I can not share on the internet yet... but I will be able to one day. Right now we are focusing on trying to catch up the delay of treatment for the bugs in my lungs. I will get to the bottom of it, my family is determined.
 
J

JennifersHope

New member
UNC did not undiagnose me, my old CF center at MUSC undiagnosed me, UNC did the Nasal PD, Dr Donaldson did, I was never seen in their clinic, just the clinical trail building, so it is not fair to say they undiagnosed me. Come to find out over a year later that they had no intention of doing it to diagnose or undiagnose but as a clinical trial. I do not know, Thank God there are still good centers, with doctors that are open to a-typical cases of CF and hopefully they will get me a diagnoses. I am frustrated with my old center as they left me flopping in the wind with out trying to help me, culture me, or do anything really, all work was done on my own intiative. There is a lot more to the story, that I can not share on the internet yet... but I will be able to one day. Right now we are focusing on trying to catch up the delay of treatment for the bugs in my lungs. I will get to the bottom of it, my family is determined.
 
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