More than CF

jena · May 25, 2008

OMG... when I saw this thread I just had to reply. I was just going to come on here quickly to research tune ups... my son is having his first next week.

What a year we've had. For issues in addition to CF he sees: a speech therapist, an orthopedic doctor, a neurologist, a urologist, and are awaiting an evaluation by an occupational therapist. He has issues with balance and coordination (walking on tiptoes... I posted on this and opened up this can of worms this past December). It's nothing drastic... he's just a little "off" with his gross motor skills. He had a surgery in November to widen the opening of his uretha (completely bad luck and unrelated to anything else). Fully recovered but now he's peeing too frequently with no obvious cause.... so more testing to figure that out (already checked the diabetes thing and we are clear). The neurologist was concerned enough about his evaluation to run an MRI (came back clear) and to test for Muscular Dystrophy (also came back clear). Our occupational evaluation will test him for Sensory Integration Disorder, which I think may finally give us an answer.

This has been such a frustrating roller coaster ride. Why can't he just be dealing with CF? You guys totally see where I am coming from. It's nice not to feel alone, BUT I am sorry that you have to go through it too. Sometimes I wonder if people think I'm crazy (Munchousen by proxy - I know I misspelled that) and trying to get attention.

OK - on to researching tune ups! I would like to talk to you guys more about this later!

Jena
son with CF - age 7
daughter age 4 - no CF

jena · May 25, 2008

OMG... when I saw this thread I just had to reply. I was just going to come on here quickly to research tune ups... my son is having his first next week.

What a year we've had. For issues in addition to CF he sees: a speech therapist, an orthopedic doctor, a neurologist, a urologist, and are awaiting an evaluation by an occupational therapist. He has issues with balance and coordination (walking on tiptoes... I posted on this and opened up this can of worms this past December). It's nothing drastic... he's just a little "off" with his gross motor skills. He had a surgery in November to widen the opening of his uretha (completely bad luck and unrelated to anything else). Fully recovered but now he's peeing too frequently with no obvious cause.... so more testing to figure that out (already checked the diabetes thing and we are clear). The neurologist was concerned enough about his evaluation to run an MRI (came back clear) and to test for Muscular Dystrophy (also came back clear). Our occupational evaluation will test him for Sensory Integration Disorder, which I think may finally give us an answer.

This has been such a frustrating roller coaster ride. Why can't he just be dealing with CF? You guys totally see where I am coming from. It's nice not to feel alone, BUT I am sorry that you have to go through it too. Sometimes I wonder if people think I'm crazy (Munchousen by proxy - I know I misspelled that) and trying to get attention.

OK - on to researching tune ups! I would like to talk to you guys more about this later!

Jena
son with CF - age 7
daughter age 4 - no CF

jena · May 25, 2008

OMG... when I saw this thread I just had to reply. I was just going to come on here quickly to research tune ups... my son is having his first next week.

What a year we've had. For issues in addition to CF he sees: a speech therapist, an orthopedic doctor, a neurologist, a urologist, and are awaiting an evaluation by an occupational therapist. He has issues with balance and coordination (walking on tiptoes... I posted on this and opened up this can of worms this past December). It's nothing drastic... he's just a little "off" with his gross motor skills. He had a surgery in November to widen the opening of his uretha (completely bad luck and unrelated to anything else). Fully recovered but now he's peeing too frequently with no obvious cause.... so more testing to figure that out (already checked the diabetes thing and we are clear). The neurologist was concerned enough about his evaluation to run an MRI (came back clear) and to test for Muscular Dystrophy (also came back clear). Our occupational evaluation will test him for Sensory Integration Disorder, which I think may finally give us an answer.

This has been such a frustrating roller coaster ride. Why can't he just be dealing with CF? You guys totally see where I am coming from. It's nice not to feel alone, BUT I am sorry that you have to go through it too. Sometimes I wonder if people think I'm crazy (Munchousen by proxy - I know I misspelled that) and trying to get attention.

OK - on to researching tune ups! I would like to talk to you guys more about this later!

Jena
son with CF - age 7
daughter age 4 - no CF

jena · May 25, 2008

OMG... when I saw this thread I just had to reply. I was just going to come on here quickly to research tune ups... my son is having his first next week.

What a year we've had. For issues in addition to CF he sees: a speech therapist, an orthopedic doctor, a neurologist, a urologist, and are awaiting an evaluation by an occupational therapist. He has issues with balance and coordination (walking on tiptoes... I posted on this and opened up this can of worms this past December). It's nothing drastic... he's just a little "off" with his gross motor skills. He had a surgery in November to widen the opening of his uretha (completely bad luck and unrelated to anything else). Fully recovered but now he's peeing too frequently with no obvious cause.... so more testing to figure that out (already checked the diabetes thing and we are clear). The neurologist was concerned enough about his evaluation to run an MRI (came back clear) and to test for Muscular Dystrophy (also came back clear). Our occupational evaluation will test him for Sensory Integration Disorder, which I think may finally give us an answer.

This has been such a frustrating roller coaster ride. Why can't he just be dealing with CF? You guys totally see where I am coming from. It's nice not to feel alone, BUT I am sorry that you have to go through it too. Sometimes I wonder if people think I'm crazy (Munchousen by proxy - I know I misspelled that) and trying to get attention.

OK - on to researching tune ups! I would like to talk to you guys more about this later!

Jena
son with CF - age 7
daughter age 4 - no CF

jena · May 25, 2008

OMG... when I saw this thread I just had to reply. I was just going to come on here quickly to research tune ups... my son is having his first next week.
 
 What a year we've had. For issues in addition to CF he sees: a speech therapist, an orthopedic doctor, a neurologist, a urologist, and are awaiting an evaluation by an occupational therapist. He has issues with balance and coordination (walking on tiptoes... I posted on this and opened up this can of worms this past December). It's nothing drastic... he's just a little "off" with his gross motor skills. He had a surgery in November to widen the opening of his uretha (completely bad luck and unrelated to anything else). Fully recovered but now he's peeing too frequently with no obvious cause.... so more testing to figure that out (already checked the diabetes thing and we are clear). The neurologist was concerned enough about his evaluation to run an MRI (came back clear) and to test for Muscular Dystrophy (also came back clear). Our occupational evaluation will test him for Sensory Integration Disorder, which I think may finally give us an answer.
 
 This has been such a frustrating roller coaster ride. Why can't he just be dealing with CF? You guys totally see where I am coming from. It's nice not to feel alone, BUT I am sorry that you have to go through it too. Sometimes I wonder if people think I'm crazy (Munchousen by proxy - I know I misspelled that) and trying to get attention.
 
 OK - on to researching tune ups! I would like to talk to you guys more about this later!
 
 Jena
 son with CF - age 7
 daughter age 4 - no CF

Buckeye · May 26, 2008

My son was born ten weeks prematurely and due to common complications of his early birth he has Cerebral Palsy, Cortical Visual Impairment, Bronchial Pulmonary Dysplasia (from being on the vent as a preemie), seizures, he's non-verbal and uses a computerized communication device to talk. He has a baclofen pump to reduce his muscle tone and a g-tube for night time extra calories. He's had hip surgery to correct his hip that was drifting out of socket on his one leg and he's supposed to have the other hip done the first week of June. He is in a wheelchair. On a regular basis we see Physical Medicine, Neurology, Neuro Surgery, Ophthalmology, Orthopedics, Gastroenterology and now the CF team.As for CF he was not diagnosed until he was 7 years old. He had always been Failure to Thrive - from day one he was always way under the charts (as in -5% to -10% percentile) and we constantly took him to a GI doctor trying to figure out why. He could eat fairly well by mouth, but still wasn't gaining weight so they wanted to put a g-tube in to get him some extra calories at night when he was about 2 ½. Of course he started not eating as well after that and we were constantly upping his g-tube food to account for the fact that he wasn't eating as much by mouth and it was a vicious circle. Anyhow, even after the g-tube he was still failure to thrive. About a year and a half ago I got fed up with the GI doctor we had been going to and drove 150 miles away to get a new opinion. Well the first day we saw the new doctor she ran a whole battery of tests - the first one being a sweat test for CF and he tested positive.By the time we got the CF diagnosis I was pretty much used to life altering medical surprises. I know a lot of the new Moms on here go through the whole grieving process and such, but with my son I had done that years ago when we found out he had Cerebral Palsy, again when we got the Cortical Visual Impairment diagnosis, and by the time we got the CF diagnosis it was just another thing to add to the list.I do find that his CF doctors don't quite know how to deal with his other disabilities. I think it freaks them out. For instance he can't do a PFT, not that he can't follow direction - he just doesn't have the control of his muscles necessary to blow air out of his lungs with any force. So we will never know what his lung function is which totally scares me. Also he can't cough well enough to cough out what's in his lungs, again due to control over his muscles, so all that stuff is just going to sit in his lungs and ferment.For those of us whose kids have other diagnoses other than just CF, there is a whole lot more to consider and a whole lot more to deal with and I know (with me at least) CF is not always the most important problem of the day. Some days it is and some days other medical problems jump to the front of the list.

Buckeye · May 26, 2008

My son was born ten weeks prematurely and due to common complications of his early birth he has Cerebral Palsy, Cortical Visual Impairment, Bronchial Pulmonary Dysplasia (from being on the vent as a preemie), seizures, he's non-verbal and uses a computerized communication device to talk. He has a baclofen pump to reduce his muscle tone and a g-tube for night time extra calories. He's had hip surgery to correct his hip that was drifting out of socket on his one leg and he's supposed to have the other hip done the first week of June. He is in a wheelchair. On a regular basis we see Physical Medicine, Neurology, Neuro Surgery, Ophthalmology, Orthopedics, Gastroenterology and now the CF team.As for CF he was not diagnosed until he was 7 years old. He had always been Failure to Thrive - from day one he was always way under the charts (as in -5% to -10% percentile) and we constantly took him to a GI doctor trying to figure out why. He could eat fairly well by mouth, but still wasn't gaining weight so they wanted to put a g-tube in to get him some extra calories at night when he was about 2 ½. Of course he started not eating as well after that and we were constantly upping his g-tube food to account for the fact that he wasn't eating as much by mouth and it was a vicious circle. Anyhow, even after the g-tube he was still failure to thrive. About a year and a half ago I got fed up with the GI doctor we had been going to and drove 150 miles away to get a new opinion. Well the first day we saw the new doctor she ran a whole battery of tests - the first one being a sweat test for CF and he tested positive.By the time we got the CF diagnosis I was pretty much used to life altering medical surprises. I know a lot of the new Moms on here go through the whole grieving process and such, but with my son I had done that years ago when we found out he had Cerebral Palsy, again when we got the Cortical Visual Impairment diagnosis, and by the time we got the CF diagnosis it was just another thing to add to the list.I do find that his CF doctors don't quite know how to deal with his other disabilities. I think it freaks them out. For instance he can't do a PFT, not that he can't follow direction - he just doesn't have the control of his muscles necessary to blow air out of his lungs with any force. So we will never know what his lung function is which totally scares me. Also he can't cough well enough to cough out what's in his lungs, again due to control over his muscles, so all that stuff is just going to sit in his lungs and ferment.For those of us whose kids have other diagnoses other than just CF, there is a whole lot more to consider and a whole lot more to deal with and I know (with me at least) CF is not always the most important problem of the day. Some days it is and some days other medical problems jump to the front of the list.

Buckeye · May 26, 2008

My son was born ten weeks prematurely and due to common complications of his early birth he has Cerebral Palsy, Cortical Visual Impairment, Bronchial Pulmonary Dysplasia (from being on the vent as a preemie), seizures, he's non-verbal and uses a computerized communication device to talk. He has a baclofen pump to reduce his muscle tone and a g-tube for night time extra calories. He's had hip surgery to correct his hip that was drifting out of socket on his one leg and he's supposed to have the other hip done the first week of June. He is in a wheelchair. On a regular basis we see Physical Medicine, Neurology, Neuro Surgery, Ophthalmology, Orthopedics, Gastroenterology and now the CF team.As for CF he was not diagnosed until he was 7 years old. He had always been Failure to Thrive - from day one he was always way under the charts (as in -5% to -10% percentile) and we constantly took him to a GI doctor trying to figure out why. He could eat fairly well by mouth, but still wasn't gaining weight so they wanted to put a g-tube in to get him some extra calories at night when he was about 2 ½. Of course he started not eating as well after that and we were constantly upping his g-tube food to account for the fact that he wasn't eating as much by mouth and it was a vicious circle. Anyhow, even after the g-tube he was still failure to thrive. About a year and a half ago I got fed up with the GI doctor we had been going to and drove 150 miles away to get a new opinion. Well the first day we saw the new doctor she ran a whole battery of tests - the first one being a sweat test for CF and he tested positive.By the time we got the CF diagnosis I was pretty much used to life altering medical surprises. I know a lot of the new Moms on here go through the whole grieving process and such, but with my son I had done that years ago when we found out he had Cerebral Palsy, again when we got the Cortical Visual Impairment diagnosis, and by the time we got the CF diagnosis it was just another thing to add to the list.I do find that his CF doctors don't quite know how to deal with his other disabilities. I think it freaks them out. For instance he can't do a PFT, not that he can't follow direction - he just doesn't have the control of his muscles necessary to blow air out of his lungs with any force. So we will never know what his lung function is which totally scares me. Also he can't cough well enough to cough out what's in his lungs, again due to control over his muscles, so all that stuff is just going to sit in his lungs and ferment.For those of us whose kids have other diagnoses other than just CF, there is a whole lot more to consider and a whole lot more to deal with and I know (with me at least) CF is not always the most important problem of the day. Some days it is and some days other medical problems jump to the front of the list.

Buckeye · May 26, 2008

My son was born ten weeks prematurely and due to common complications of his early birth he has Cerebral Palsy, Cortical Visual Impairment, Bronchial Pulmonary Dysplasia (from being on the vent as a preemie), seizures, he's non-verbal and uses a computerized communication device to talk. He has a baclofen pump to reduce his muscle tone and a g-tube for night time extra calories. He's had hip surgery to correct his hip that was drifting out of socket on his one leg and he's supposed to have the other hip done the first week of June. He is in a wheelchair. On a regular basis we see Physical Medicine, Neurology, Neuro Surgery, Ophthalmology, Orthopedics, Gastroenterology and now the CF team.As for CF he was not diagnosed until he was 7 years old. He had always been Failure to Thrive - from day one he was always way under the charts (as in -5% to -10% percentile) and we constantly took him to a GI doctor trying to figure out why. He could eat fairly well by mouth, but still wasn't gaining weight so they wanted to put a g-tube in to get him some extra calories at night when he was about 2 ½. Of course he started not eating as well after that and we were constantly upping his g-tube food to account for the fact that he wasn't eating as much by mouth and it was a vicious circle. Anyhow, even after the g-tube he was still failure to thrive. About a year and a half ago I got fed up with the GI doctor we had been going to and drove 150 miles away to get a new opinion. Well the first day we saw the new doctor she ran a whole battery of tests - the first one being a sweat test for CF and he tested positive.By the time we got the CF diagnosis I was pretty much used to life altering medical surprises. I know a lot of the new Moms on here go through the whole grieving process and such, but with my son I had done that years ago when we found out he had Cerebral Palsy, again when we got the Cortical Visual Impairment diagnosis, and by the time we got the CF diagnosis it was just another thing to add to the list.I do find that his CF doctors don't quite know how to deal with his other disabilities. I think it freaks them out. For instance he can't do a PFT, not that he can't follow direction - he just doesn't have the control of his muscles necessary to blow air out of his lungs with any force. So we will never know what his lung function is which totally scares me. Also he can't cough well enough to cough out what's in his lungs, again due to control over his muscles, so all that stuff is just going to sit in his lungs and ferment.For those of us whose kids have other diagnoses other than just CF, there is a whole lot more to consider and a whole lot more to deal with and I know (with me at least) CF is not always the most important problem of the day. Some days it is and some days other medical problems jump to the front of the list.

Buckeye · May 26, 2008

My son was born ten weeks prematurely and due to common complications of his early birth he has Cerebral Palsy, Cortical Visual Impairment, Bronchial Pulmonary Dysplasia (from being on the vent as a preemie), seizures, he's non-verbal and uses a computerized communication device to talk. He has a baclofen pump to reduce his muscle tone and a g-tube for night time extra calories. He's had hip surgery to correct his hip that was drifting out of socket on his one leg and he's supposed to have the other hip done the first week of June. He is in a wheelchair. On a regular basis we see Physical Medicine, Neurology, Neuro Surgery, Ophthalmology, Orthopedics, Gastroenterology and now the CF team.As for CF he was not diagnosed until he was 7 years old. He had always been Failure to Thrive - from day one he was always way under the charts (as in -5% to -10% percentile) and we constantly took him to a GI doctor trying to figure out why. He could eat fairly well by mouth, but still wasn't gaining weight so they wanted to put a g-tube in to get him some extra calories at night when he was about 2 ½. Of course he started not eating as well after that and we were constantly upping his g-tube food to account for the fact that he wasn't eating as much by mouth and it was a vicious circle. Anyhow, even after the g-tube he was still failure to thrive. About a year and a half ago I got fed up with the GI doctor we had been going to and drove 150 miles away to get a new opinion. Well the first day we saw the new doctor she ran a whole battery of tests - the first one being a sweat test for CF and he tested positive.By the time we got the CF diagnosis I was pretty much used to life altering medical surprises. I know a lot of the new Moms on here go through the whole grieving process and such, but with my son I had done that years ago when we found out he had Cerebral Palsy, again when we got the Cortical Visual Impairment diagnosis, and by the time we got the CF diagnosis it was just another thing to add to the list.I do find that his CF doctors don't quite know how to deal with his other disabilities. I think it freaks them out. For instance he can't do a PFT, not that he can't follow direction - he just doesn't have the control of his muscles necessary to blow air out of his lungs with any force. So we will never know what his lung function is which totally scares me. Also he can't cough well enough to cough out what's in his lungs, again due to control over his muscles, so all that stuff is just going to sit in his lungs and ferment.For those of us whose kids have other diagnoses other than just CF, there is a whole lot more to consider and a whole lot more to deal with and I know (with me at least) CF is not always the most important problem of the day. Some days it is and some days other medical problems jump to the front of the list.

chrissyd · May 26, 2008

Cystic Fibrosis
2 rare mitochondrial mutations (one is rare but seen before; the other is completely unique to me so far. So in other words, the have no clue what it's going to cause. But they believe the both cause Mitochondrial cytopathy...right now I have alot of muscle cramps and weakness.)
<a target=_blank class=ftalternatingbarlinklarge href="http://www.clevelandclinic.org/health/health-info/docs/2600/2603.asp?index=9493&src=news">Mitochondrial Cytopathies</a>

and

<a target=_blank class=ftalternatingbarlinklarge href="http://www.ccjm.org/pdffiles/COHEN701.PDF">What we know so far</a>
describe them better than I can...

Mild AI (leaky valve in my heart)
Blood clotting disorder (blood clots too quickly sometimes)

Hypothyroid
Reflux

My little bro was dx'd with ADHD. They gave hime meds, and he actualy spent a good bit of his childhood on them. He had a rough time, but they have so many different meds for it now...and some cases can even be controlled with dietary changes.

<img src="i/expressions/rose.gif" border="0">

chrissyd · May 26, 2008

Cystic Fibrosis
2 rare mitochondrial mutations (one is rare but seen before; the other is completely unique to me so far. So in other words, the have no clue what it's going to cause. But they believe the both cause Mitochondrial cytopathy...right now I have alot of muscle cramps and weakness.)
<a target=_blank class=ftalternatingbarlinklarge href="http://www.clevelandclinic.org/health/health-info/docs/2600/2603.asp?index=9493&src=news">Mitochondrial Cytopathies</a>

and

<a target=_blank class=ftalternatingbarlinklarge href="http://www.ccjm.org/pdffiles/COHEN701.PDF">What we know so far</a>
describe them better than I can...

Mild AI (leaky valve in my heart)
Blood clotting disorder (blood clots too quickly sometimes)

Hypothyroid
Reflux

My little bro was dx'd with ADHD. They gave hime meds, and he actualy spent a good bit of his childhood on them. He had a rough time, but they have so many different meds for it now...and some cases can even be controlled with dietary changes.

<img src="i/expressions/rose.gif" border="0">

chrissyd · May 26, 2008

Cystic Fibrosis
2 rare mitochondrial mutations (one is rare but seen before; the other is completely unique to me so far. So in other words, the have no clue what it's going to cause. But they believe the both cause Mitochondrial cytopathy...right now I have alot of muscle cramps and weakness.)
<a target=_blank class=ftalternatingbarlinklarge href="http://www.clevelandclinic.org/health/health-info/docs/2600/2603.asp?index=9493&src=news">Mitochondrial Cytopathies</a>

and

<a target=_blank class=ftalternatingbarlinklarge href="http://www.ccjm.org/pdffiles/COHEN701.PDF">What we know so far</a>
describe them better than I can...

Mild AI (leaky valve in my heart)
Blood clotting disorder (blood clots too quickly sometimes)

Hypothyroid
Reflux

My little bro was dx'd with ADHD. They gave hime meds, and he actualy spent a good bit of his childhood on them. He had a rough time, but they have so many different meds for it now...and some cases can even be controlled with dietary changes.

<img src="i/expressions/rose.gif" border="0">

chrissyd · May 26, 2008

Cystic Fibrosis
2 rare mitochondrial mutations (one is rare but seen before; the other is completely unique to me so far. So in other words, the have no clue what it's going to cause. But they believe the both cause Mitochondrial cytopathy...right now I have alot of muscle cramps and weakness.)
<a target=_blank class=ftalternatingbarlinklarge href="http://www.clevelandclinic.org/health/health-info/docs/2600/2603.asp?index=9493&src=news">Mitochondrial Cytopathies</a>

and

<a target=_blank class=ftalternatingbarlinklarge href="http://www.ccjm.org/pdffiles/COHEN701.PDF">What we know so far</a>
describe them better than I can...

Mild AI (leaky valve in my heart)
Blood clotting disorder (blood clots too quickly sometimes)

Hypothyroid
Reflux

My little bro was dx'd with ADHD. They gave hime meds, and he actualy spent a good bit of his childhood on them. He had a rough time, but they have so many different meds for it now...and some cases can even be controlled with dietary changes.

<img src="i/expressions/rose.gif" border="0">

chrissyd · May 26, 2008

Cystic Fibrosis
 2 rare mitochondrial mutations (one is rare but seen before; the other is completely unique to me so far. So in other words, the have no clue what it's going to cause. But they believe the both cause Mitochondrial cytopathy...right now I have alot of muscle cramps and weakness.)
 <a target=_blank class=ftalternatingbarlinklarge href="http://www.clevelandclinic.org/health/health-info/docs/2600/2603.asp?index=9493&src=news">Mitochondrial Cytopathies</a>
 
 and
 
 <a target=_blank class=ftalternatingbarlinklarge href="http://www.ccjm.org/pdffiles/COHEN701.PDF">What we know so far</a>
 describe them better than I can...
 
 Mild AI (leaky valve in my heart)
 Blood clotting disorder (blood clots too quickly sometimes)
 
 Hypothyroid
 Reflux
 
 
 
 My little bro was dx'd with ADHD. They gave hime meds, and he actualy spent a good bit of his childhood on them. He had a rough time, but they have so many different meds for it now...and some cases can even be controlled with dietary changes.
 
 <img src="i/expressions/rose.gif" border="0">

JustDucky · May 26, 2008

Hm...Besides the CF...I too have Ehlers Danlos, not to mention a funky muscular disorder that the docs are still trying to figure out (I live on a vent because of this..I have matchstick arms and legs, my diaphragm waved bye bye about 5 years ago), collagen problems besides the Ehlers, Hashimoto's, the list goes on. YOu are right Pam, sometimes it isn't always CF that causes the greatest concern on any particular day. I too have problems with doctors who have a hard time dealing with my other extensive medical problems. Hugs, Jenn

JustDucky · May 26, 2008

Hm...Besides the CF...I too have Ehlers Danlos, not to mention a funky muscular disorder that the docs are still trying to figure out (I live on a vent because of this..I have matchstick arms and legs, my diaphragm waved bye bye about 5 years ago), collagen problems besides the Ehlers, Hashimoto's, the list goes on. YOu are right Pam, sometimes it isn't always CF that causes the greatest concern on any particular day. I too have problems with doctors who have a hard time dealing with my other extensive medical problems. Hugs, Jenn

JustDucky · May 26, 2008

Hm...Besides the CF...I too have Ehlers Danlos, not to mention a funky muscular disorder that the docs are still trying to figure out (I live on a vent because of this..I have matchstick arms and legs, my diaphragm waved bye bye about 5 years ago), collagen problems besides the Ehlers, Hashimoto's, the list goes on. YOu are right Pam, sometimes it isn't always CF that causes the greatest concern on any particular day. I too have problems with doctors who have a hard time dealing with my other extensive medical problems. Hugs, Jenn

JustDucky · May 26, 2008

Hm...Besides the CF...I too have Ehlers Danlos, not to mention a funky muscular disorder that the docs are still trying to figure out (I live on a vent because of this..I have matchstick arms and legs, my diaphragm waved bye bye about 5 years ago), collagen problems besides the Ehlers, Hashimoto's, the list goes on. YOu are right Pam, sometimes it isn't always CF that causes the greatest concern on any particular day. I too have problems with doctors who have a hard time dealing with my other extensive medical problems. Hugs, Jenn

JustDucky · May 26, 2008

Hm...Besides the CF...I too have Ehlers Danlos, not to mention a funky muscular disorder that the docs are still trying to figure out (I live on a vent because of this..I have matchstick arms and legs, my diaphragm waved bye bye about 5 years ago), collagen problems besides the Ehlers, Hashimoto's, the list goes on. YOu are right Pam, sometimes it isn't always CF that causes the greatest concern on any particular day. I too have problems with doctors who have a hard time dealing with my other extensive medical problems. Hugs, Jenn

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