Update to My son and CF testing.

[Vampy]

I previously posted about the possibility of lukey having cf. I gave his odd symptoms that resemble cystic fibrosis. Here are they again, tell me im paranoid or not.
*Hard, large stools that stink worse and float.
*Constant eating (no end in sight)
*constant infections such as respitory, and sinus.
*Bloated stomach and constapation.
The dr told me before he had a "Increased central markings of the bronicatic process, or active airway disease. Also, that he had a "Gaseous Distention of the upper abdomen and bowel.

Heres the update, i took him to a pediatrician today, and the dr noticed his stomach, i told him about the stools and constant hunger and always being sick. I told him lucas was tested as a newborn and they found out he didn't have the gene, but the gene that can manifest itself and mutate. well he said that lucas may have a mild form of CF and that he should be tested by the nearest childrens hospital. I called up there and they pulled his record from being tested, they said that he had the gene (Thought before they told me he didn't) So he will be tested on the 14th, thats if the 13th is the final court date for custody arrangement and he stays with me and not going back to his fathers. Please pray for us and any comments would be greatly appreciated.

 

[Vampy]

I previously posted about the possibility of lukey having cf. I gave his odd symptoms that resemble cystic fibrosis. Here are they again, tell me im paranoid or not.
*Hard, large stools that stink worse and float.
*Constant eating (no end in sight)
*constant infections such as respitory, and sinus.
*Bloated stomach and constapation.
The dr told me before he had a "Increased central markings of the bronicatic process, or active airway disease. Also, that he had a "Gaseous Distention of the upper abdomen and bowel.

Heres the update, i took him to a pediatrician today, and the dr noticed his stomach, i told him about the stools and constant hunger and always being sick. I told him lucas was tested as a newborn and they found out he didn't have the gene, but the gene that can manifest itself and mutate. well he said that lucas may have a mild form of CF and that he should be tested by the nearest childrens hospital. I called up there and they pulled his record from being tested, they said that he had the gene (Thought before they told me he didn't) So he will be tested on the 14th, thats if the 13th is the final court date for custody arrangement and he stays with me and not going back to his fathers. Please pray for us and any comments would be greatly appreciated.

 

[Vampy]

I previously posted about the possibility of lukey having cf. I gave his odd symptoms that resemble cystic fibrosis. Here are they again, tell me im paranoid or not.
<br />*Hard, large stools that stink worse and float.
<br />*Constant eating (no end in sight)
<br />*constant infections such as respitory, and sinus.
<br />*Bloated stomach and constapation.
<br />The dr told me before he had a "Increased central markings of the bronicatic process, or active airway disease. Also, that he had a "Gaseous Distention of the upper abdomen and bowel.
<br />
<br />Heres the update, i took him to a pediatrician today, and the dr noticed his stomach, i told him about the stools and constant hunger and always being sick. I told him lucas was tested as a newborn and they found out he didn't have the gene, but the gene that can manifest itself and mutate. well he said that lucas may have a mild form of CF and that he should be tested by the nearest childrens hospital. I called up there and they pulled his record from being tested, they said that he had the gene (Thought before they told me he didn't) So he will be tested on the 14th, thats if the 13th is the final court date for custody arrangement and he stays with me and not going back to his fathers. Please pray for us and any comments would be greatly appreciated.

 

[LouLou]

Yes, Lucus is born from you so he got one of your two genes no doubt. The question is did he also get one from his father. He'll need to be extensively tested in order to rule out any chance. Do not settle for anything with the world PANEL associated with it or sweat test alone. If I were you I would want a sweat test and genetic sequencing done in the same day by an accredited cf center. This will rule out that he doens't have a second mutation and if they do find another in addition to the one of yours he has the sweat test results will give them more knowledge about his chloride channel disfunction. I would bring a letter from the cf center stating you are having genetic testing completed on the 14th to the court date. Go momma!! Fight! Fight for the answer! Luke and you deserve to know.

 

[LouLou]

Yes, Lucus is born from you so he got one of your two genes no doubt. The question is did he also get one from his father. He'll need to be extensively tested in order to rule out any chance. Do not settle for anything with the world PANEL associated with it or sweat test alone. If I were you I would want a sweat test and genetic sequencing done in the same day by an accredited cf center. This will rule out that he doens't have a second mutation and if they do find another in addition to the one of yours he has the sweat test results will give them more knowledge about his chloride channel disfunction. I would bring a letter from the cf center stating you are having genetic testing completed on the 14th to the court date. Go momma!! Fight! Fight for the answer! Luke and you deserve to know.

 

[LouLou]

Yes, Lucus is born from you so he got one of your two genes no doubt. The question is did he also get one from his father. He'll need to be extensively tested in order to rule out any chance. Do not settle for anything with the world PANEL associated with it or sweat test alone. If I were you I would want a sweat test and genetic sequencing done in the same day by an accredited cf center. This will rule out that he doens't have a second mutation and if they do find another in addition to the one of yours he has the sweat test results will give them more knowledge about his chloride channel disfunction. I would bring a letter from the cf center stating you are having genetic testing completed on the 14th to the court date. Go momma!! Fight! Fight for the answer! Luke and you deserve to know.

 

[hmw]

<div class="FTQUOTE"><begin quote>I told him lucas was tested as a newborn and they found out he didn't have the gene, but the gene that can manifest itself and mutate. well he said that lucas may have a mild form of CF and that he should be tested by the nearest childrens hospital. I called up there and they pulled his record from being tested, they said that he had the gene (Thought before they told me he didn't)</end quote></div>
I would call back and ask, very specifically, <b>"How many mutations came back on Lucas' test and WHICH ONES are they?"</b> since they are being very roundabout/confusing in what they are telling you. If they are vague or repeat 'mild' or whatever, ask again "I am not asking what you think about them, I am asking what they are called and if there was one of them or two." If you ask what mutations, have a pen and paper handy to write them down exactly... I am sure there will be people here who will be familiar with them, given how many people are here with so many different ones and maybe there will be some experience we can share with you. He will have one of your mutations for sure- since you had to pass him one of your genes, so it's really just a matter of whether or not he has a 2nd one.

Yes, his symptoms are of great concern... I am glad he's being tested. I assume the test he's having is a sweat test? It concerns me greatly that they've been sitting on the fact that he has mutation(s) and a potential dx and seeing all these illnesses over the last several years and have taken no action- but they are doing it now, so that's what's important.

A couple more thoughts: PLEASE make sure they follow through on a comprehensive genetic test (i.e. Ambry Amplified for CF) if only one mutation was found on his newborn screen and/or his sweat test is considered to be "normal." His symptoms are too concerning to let go. Obviously, if his NBS found 2 mutations, that plus his symptoms = a CF dx no matter what the results of his sweat test are. I also hope his upcoming testing/appt, etc will be at an accredited center.

Wishing the best for your upcoming custody hearing... hope it goes well. <img src="i/expressions/rose.gif" border="0">

 

[hmw]

<div class="FTQUOTE"><begin quote>I told him lucas was tested as a newborn and they found out he didn't have the gene, but the gene that can manifest itself and mutate. well he said that lucas may have a mild form of CF and that he should be tested by the nearest childrens hospital. I called up there and they pulled his record from being tested, they said that he had the gene (Thought before they told me he didn't)</end quote>
I would call back and ask, very specifically, <b>"How many mutations came back on Lucas' test and WHICH ONES are they?"</b> since they are being very roundabout/confusing in what they are telling you. If they are vague or repeat 'mild' or whatever, ask again "I am not asking what you think about them, I am asking what they are called and if there was one of them or two." If you ask what mutations, have a pen and paper handy to write them down exactly... I am sure there will be people here who will be familiar with them, given how many people are here with so many different ones and maybe there will be some experience we can share with you. He will have one of your mutations for sure- since you had to pass him one of your genes, so it's really just a matter of whether or not he has a 2nd one.

Yes, his symptoms are of great concern... I am glad he's being tested. I assume the test he's having is a sweat test? It concerns me greatly that they've been sitting on the fact that he has mutation(s) and a potential dx and seeing all these illnesses over the last several years and have taken no action- but they are doing it now, so that's what's important.

A couple more thoughts: PLEASE make sure they follow through on a comprehensive genetic test (i.e. Ambry Amplified for CF) if only one mutation was found on his newborn screen and/or his sweat test is considered to be "normal." His symptoms are too concerning to let go. Obviously, if his NBS found 2 mutations, that plus his symptoms = a CF dx no matter what the results of his sweat test are. I also hope his upcoming testing/appt, etc will be at an accredited center.

Wishing the best for your upcoming custody hearing... hope it goes well. <img src="i/expressions/rose.gif" border="0">

 

[hmw]

<div class="FTQUOTE"><begin quote>I told him lucas was tested as a newborn and they found out he didn't have the gene, but the gene that can manifest itself and mutate. well he said that lucas may have a mild form of CF and that he should be tested by the nearest childrens hospital. I called up there and they pulled his record from being tested, they said that he had the gene (Thought before they told me he didn't)</end quote>
<br />I would call back and ask, very specifically, <b>"How many mutations came back on Lucas' test and WHICH ONES are they?"</b> since they are being very roundabout/confusing in what they are telling you. If they are vague or repeat 'mild' or whatever, ask again "I am not asking what you think about them, I am asking what they are called and if there was one of them or two." If you ask what mutations, have a pen and paper handy to write them down exactly... I am sure there will be people here who will be familiar with them, given how many people are here with so many different ones and maybe there will be some experience we can share with you. He will have one of your mutations for sure- since you had to pass him one of your genes, so it's really just a matter of whether or not he has a 2nd one.
<br />
<br />Yes, his symptoms are of great concern... I am glad he's being tested. I assume the test he's having is a sweat test? It concerns me greatly that they've been sitting on the fact that he has mutation(s) and a potential dx and seeing all these illnesses over the last several years and have taken no action- but they are doing it now, so that's what's important.
<br />
<br />A couple more thoughts: PLEASE make sure they follow through on a comprehensive genetic test (i.e. Ambry Amplified for CF) if only one mutation was found on his newborn screen and/or his sweat test is considered to be "normal." His symptoms are too concerning to let go. Obviously, if his NBS found 2 mutations, that plus his symptoms = a CF dx no matter what the results of his sweat test are. I also hope his upcoming testing/appt, etc will be at an accredited center.
<br />
<br />Wishing the best for your upcoming custody hearing... hope it goes well. <img src="i/expressions/rose.gif" border="0">

 

[Vampy]

for the past near three years his father has had custody of him, but due to the suspicisons of abuse and neglect and medical neglect i had recently gotten him back, seeing his medical records, there are some great concerns of this. his father never took care of him and never took lucas's being sick very serious. basically it comes down to hes a tax raise for him and that his gfs kids and there new baby was more important then lucas, it made it apparent since hes souly convince i "Kidnapped" my child he hasnt called or contacted us once about him. I refuses to believe that i have had legal help in all of this. Now i don't care about his father and i have court coming up on the 13th. All i care about is seeing if my baby is ok or not.

 

[Vampy]

for the past near three years his father has had custody of him, but due to the suspicisons of abuse and neglect and medical neglect i had recently gotten him back, seeing his medical records, there are some great concerns of this. his father never took care of him and never took lucas's being sick very serious. basically it comes down to hes a tax raise for him and that his gfs kids and there new baby was more important then lucas, it made it apparent since hes souly convince i "Kidnapped" my child he hasnt called or contacted us once about him. I refuses to believe that i have had legal help in all of this. Now i don't care about his father and i have court coming up on the 13th. All i care about is seeing if my baby is ok or not.

 

[Vampy]

for the past near three years his father has had custody of him, but due to the suspicisons of abuse and neglect and medical neglect i had recently gotten him back, seeing his medical records, there are some great concerns of this. his father never took care of him and never took lucas's being sick very serious. basically it comes down to hes a tax raise for him and that his gfs kids and there new baby was more important then lucas, it made it apparent since hes souly convince i "Kidnapped" my child he hasnt called or contacted us once about him. I refuses to believe that i have had legal help in all of this. Now i don't care about his father and i have court coming up on the 13th. All i care about is seeing if my baby is ok or not.

 

[hmw]

I am so sorry that Lucas' health was ignored during the time he was with his father. I would make sure that you bring whatever medical records you have with you when you see the cf dr.

Now, with a court date coming up~ you may want to ask the pediatrician that question about which mutations were found on the newborn screen, or have whoever is representing you at the hearing look at those records. A strong possibility of CF or a positive NBS that was never followed up on is something the judge should be made aware of before custody is decided, I think.

 

[hmw]

I am so sorry that Lucas' health was ignored during the time he was with his father. I would make sure that you bring whatever medical records you have with you when you see the cf dr.

Now, with a court date coming up~ you may want to ask the pediatrician that question about which mutations were found on the newborn screen, or have whoever is representing you at the hearing look at those records. A strong possibility of CF or a positive NBS that was never followed up on is something the judge should be made aware of before custody is decided, I think.

 

[hmw]

I am so sorry that Lucas' health was ignored during the time he was with his father. I would make sure that you bring whatever medical records you have with you when you see the cf dr.
<br />
<br />Now, with a court date coming up~ you may want to ask the pediatrician that question about which mutations were found on the newborn screen, or have whoever is representing you at the hearing look at those records. A strong possibility of CF or a positive NBS that was never followed up on is something the judge should be made aware of before custody is decided, I think.

 

[Vampy]

yea i know, i am so nervous about court. I know and everyone who knows me knows i am a good mommy except the courts they don't see what goes on, i have at least 4 people writing statements for me and against his father for the crap he put my son through. he only got custody bc through our divorce, i was homeless bc disability shut me off. WHICH btw they sent me a letter yesterday saying that they are reopening my case for a reconsideration of my disability determination bc i have a lawyer. And when it comes through i'm buying a house off sheriffs auction. before my son lived with me, he couldnt talk, and he wasn't the same, really shut down and everything, now hes normal, he runs talks plays. he can say his abcs, 123s, we are working on him with everything, teeth gets brushed every night, he gets his medicine every single time he needs it and rarely do we miss one. i take better care of him then i do myself. i work more then fourty hours a week and i'm in college for my associates degree in psychology. i hope the courts takes this into consideration and sees that lucas doesn't want to go back to his dad, he never says anything about his father, and never wants to even talk to his daddy on the phone. Nor has his father even called about lucas since i have gotten him. I look at him and all i can do is shake my head because i know what i have went through he may be going through the same thing right now, we don't really know. i am doing the best i can and thats all i can really do ya know.

 

[Vampy]

yea i know, i am so nervous about court. I know and everyone who knows me knows i am a good mommy except the courts they don't see what goes on, i have at least 4 people writing statements for me and against his father for the crap he put my son through. he only got custody bc through our divorce, i was homeless bc disability shut me off. WHICH btw they sent me a letter yesterday saying that they are reopening my case for a reconsideration of my disability determination bc i have a lawyer. And when it comes through i'm buying a house off sheriffs auction. before my son lived with me, he couldnt talk, and he wasn't the same, really shut down and everything, now hes normal, he runs talks plays. he can say his abcs, 123s, we are working on him with everything, teeth gets brushed every night, he gets his medicine every single time he needs it and rarely do we miss one. i take better care of him then i do myself. i work more then fourty hours a week and i'm in college for my associates degree in psychology. i hope the courts takes this into consideration and sees that lucas doesn't want to go back to his dad, he never says anything about his father, and never wants to even talk to his daddy on the phone. Nor has his father even called about lucas since i have gotten him. I look at him and all i can do is shake my head because i know what i have went through he may be going through the same thing right now, we don't really know. i am doing the best i can and thats all i can really do ya know.

 

[Vampy]

yea i know, i am so nervous about court. I know and everyone who knows me knows i am a good mommy except the courts they don't see what goes on, i have at least 4 people writing statements for me and against his father for the crap he put my son through. he only got custody bc through our divorce, i was homeless bc disability shut me off. WHICH btw they sent me a letter yesterday saying that they are reopening my case for a reconsideration of my disability determination bc i have a lawyer. And when it comes through i'm buying a house off sheriffs auction. before my son lived with me, he couldnt talk, and he wasn't the same, really shut down and everything, now hes normal, he runs talks plays. he can say his abcs, 123s, we are working on him with everything, teeth gets brushed every night, he gets his medicine every single time he needs it and rarely do we miss one. i take better care of him then i do myself. i work more then fourty hours a week and i'm in college for my associates degree in psychology. i hope the courts takes this into consideration and sees that lucas doesn't want to go back to his dad, he never says anything about his father, and never wants to even talk to his daddy on the phone. Nor has his father even called about lucas since i have gotten him. I look at him and all i can do is shake my head because i know what i have went through he may be going through the same thing right now, we don't really know. i am doing the best i can and thats all i can really do ya know.

 

[AleksandraKaczynska]

Hi,
I'm sorry this hapend to you and your son but please - take care of yourself also! Your son needs you healthy and so may the court look into this also. I don't know how the things look like in U.S concerning custoty and so on - but here - the court looks into the fact if the parent can provide for a long time - for her child. if the judge thinks not - the child often ends up taken away since the parent is sick - no matter how well you try and how good a mother you are....
have the test and results of your son also.
Good luck and be strong

 

[AleksandraKaczynska]

Hi,
I'm sorry this hapend to you and your son but please - take care of yourself also! Your son needs you healthy and so may the court look into this also. I don't know how the things look like in U.S concerning custoty and so on - but here - the court looks into the fact if the parent can provide for a long time - for her child. if the judge thinks not - the child often ends up taken away since the parent is sick - no matter how well you try and how good a mother you are....
have the test and results of your son also.
Good luck and be strong