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Unsure need advice

jaazavala

New member
Cystic Fibrosis has just came up as a possible explination of why my 11 month old daughter is alway sick. I have been reading this forum for about 3hrs now and I have a lot of questions that I am hoping you guys can help me with.

First let me give you a heath history of my daughter. When she was 5 weeks old she started to spit up a little bit of blood. I took her to the doctors right away and we did stool samples to see if she was passing blood all the way through. They came back positive for blood. We then did an ultrasound of her abdomin which was normal and another test that I'm not sure what is called where she drank a thick white liquid (barrium?) and then they scaned her in a kind of x-ray looking machine and we wached the liquid go down into her stomic on a monitor. That was also fine. I was told that she had acid reflux and that the acid caused the bleeding in her esophigus. She was then put on zantac and she hasnt spit up blood since. But she never seemed to be in any pain.

When she was 4months old she had wheezing bronchitis. She was on antibiotics and almost as soon as she was done she developed an ear infection that lasted for 3 months. It took I think 5 different oral anitbioticis and 2 different set of shots to get rid of it. Meanwile she had wheezing bronchitis I think it was 5 times in 4 months. She was hospitalized at 9 months with ashma. At the same time she also had a uti and pharengitis. She has had pharengitis 3 or 4 time also.

She also has a hard time with bm's they are not hard so it does not make sence to me why she has such a hard time going. Alot of the time she throws up from pushing so hard then I change her and it is soft??? I have also notice that a lot of time when she eats I will change her 2 or 3 hrs later and if she ate for example peachs you can tell they where peaches in her diaper like she is not digesting anything.

She only goes 2 to 3 weeks without getting sick. I was going to say with the exception of this last time where she went for almost 6 weeks but she had the flu during that time.

OK so my sister knows someone who has a child with cf and they were talking about him when my sister said that sounds like my daughter so I did some reserch and here I am. The more I read the more I'm convince that my Daughter has cf and posibly my son. I would like to know what you think. The last time I was at the doctor a week ago I asked for a referal to an ashma alergist for my daughter so that she could get on the children with special need insurance to help with doctor bills. Her pediatrician suggested a pulmotologist due to the fact that we already had alergy testing done and it was all negative. So I do not know when her apt will be but it is being set up. I also called my ob today to see if I had the test when I was pregnant to see if I was a carrier and I declined the test so that did me no good but I also called her doc to ask if we could get the sweat test done befor we go to the pulmonoglgist which is about 1 and 1/2 hrs from where we live and so is the facility where they do the testing at. So hopefully she will call me back tomorrow.

My son on the other hand has always been heathy except for sever constant sinus infections. He had his adnoids out 6 weeks ago and had had 2 sinus infections duing that time. He also always complains of his stomic hurting EVERY time he eats. He is on previcid now and that seemes to be helping a little bit but I still cannot get him to eat.

I think the hardest part is waiting. Any advice or info or anything would be great. Thanks
 

jaazavala

New member
Cystic Fibrosis has just came up as a possible explination of why my 11 month old daughter is alway sick. I have been reading this forum for about 3hrs now and I have a lot of questions that I am hoping you guys can help me with.

First let me give you a heath history of my daughter. When she was 5 weeks old she started to spit up a little bit of blood. I took her to the doctors right away and we did stool samples to see if she was passing blood all the way through. They came back positive for blood. We then did an ultrasound of her abdomin which was normal and another test that I'm not sure what is called where she drank a thick white liquid (barrium?) and then they scaned her in a kind of x-ray looking machine and we wached the liquid go down into her stomic on a monitor. That was also fine. I was told that she had acid reflux and that the acid caused the bleeding in her esophigus. She was then put on zantac and she hasnt spit up blood since. But she never seemed to be in any pain.

When she was 4months old she had wheezing bronchitis. She was on antibiotics and almost as soon as she was done she developed an ear infection that lasted for 3 months. It took I think 5 different oral anitbioticis and 2 different set of shots to get rid of it. Meanwile she had wheezing bronchitis I think it was 5 times in 4 months. She was hospitalized at 9 months with ashma. At the same time she also had a uti and pharengitis. She has had pharengitis 3 or 4 time also.

She also has a hard time with bm's they are not hard so it does not make sence to me why she has such a hard time going. Alot of the time she throws up from pushing so hard then I change her and it is soft??? I have also notice that a lot of time when she eats I will change her 2 or 3 hrs later and if she ate for example peachs you can tell they where peaches in her diaper like she is not digesting anything.

She only goes 2 to 3 weeks without getting sick. I was going to say with the exception of this last time where she went for almost 6 weeks but she had the flu during that time.

OK so my sister knows someone who has a child with cf and they were talking about him when my sister said that sounds like my daughter so I did some reserch and here I am. The more I read the more I'm convince that my Daughter has cf and posibly my son. I would like to know what you think. The last time I was at the doctor a week ago I asked for a referal to an ashma alergist for my daughter so that she could get on the children with special need insurance to help with doctor bills. Her pediatrician suggested a pulmotologist due to the fact that we already had alergy testing done and it was all negative. So I do not know when her apt will be but it is being set up. I also called my ob today to see if I had the test when I was pregnant to see if I was a carrier and I declined the test so that did me no good but I also called her doc to ask if we could get the sweat test done befor we go to the pulmonoglgist which is about 1 and 1/2 hrs from where we live and so is the facility where they do the testing at. So hopefully she will call me back tomorrow.

My son on the other hand has always been heathy except for sever constant sinus infections. He had his adnoids out 6 weeks ago and had had 2 sinus infections duing that time. He also always complains of his stomic hurting EVERY time he eats. He is on previcid now and that seemes to be helping a little bit but I still cannot get him to eat.

I think the hardest part is waiting. Any advice or info or anything would be great. Thanks
 

jaazavala

New member
Cystic Fibrosis has just came up as a possible explination of why my 11 month old daughter is alway sick. I have been reading this forum for about 3hrs now and I have a lot of questions that I am hoping you guys can help me with.

First let me give you a heath history of my daughter. When she was 5 weeks old she started to spit up a little bit of blood. I took her to the doctors right away and we did stool samples to see if she was passing blood all the way through. They came back positive for blood. We then did an ultrasound of her abdomin which was normal and another test that I'm not sure what is called where she drank a thick white liquid (barrium?) and then they scaned her in a kind of x-ray looking machine and we wached the liquid go down into her stomic on a monitor. That was also fine. I was told that she had acid reflux and that the acid caused the bleeding in her esophigus. She was then put on zantac and she hasnt spit up blood since. But she never seemed to be in any pain.

When she was 4months old she had wheezing bronchitis. She was on antibiotics and almost as soon as she was done she developed an ear infection that lasted for 3 months. It took I think 5 different oral anitbioticis and 2 different set of shots to get rid of it. Meanwile she had wheezing bronchitis I think it was 5 times in 4 months. She was hospitalized at 9 months with ashma. At the same time she also had a uti and pharengitis. She has had pharengitis 3 or 4 time also.

She also has a hard time with bm's they are not hard so it does not make sence to me why she has such a hard time going. Alot of the time she throws up from pushing so hard then I change her and it is soft??? I have also notice that a lot of time when she eats I will change her 2 or 3 hrs later and if she ate for example peachs you can tell they where peaches in her diaper like she is not digesting anything.

She only goes 2 to 3 weeks without getting sick. I was going to say with the exception of this last time where she went for almost 6 weeks but she had the flu during that time.

OK so my sister knows someone who has a child with cf and they were talking about him when my sister said that sounds like my daughter so I did some reserch and here I am. The more I read the more I'm convince that my Daughter has cf and posibly my son. I would like to know what you think. The last time I was at the doctor a week ago I asked for a referal to an ashma alergist for my daughter so that she could get on the children with special need insurance to help with doctor bills. Her pediatrician suggested a pulmotologist due to the fact that we already had alergy testing done and it was all negative. So I do not know when her apt will be but it is being set up. I also called my ob today to see if I had the test when I was pregnant to see if I was a carrier and I declined the test so that did me no good but I also called her doc to ask if we could get the sweat test done befor we go to the pulmonoglgist which is about 1 and 1/2 hrs from where we live and so is the facility where they do the testing at. So hopefully she will call me back tomorrow.

My son on the other hand has always been heathy except for sever constant sinus infections. He had his adnoids out 6 weeks ago and had had 2 sinus infections duing that time. He also always complains of his stomic hurting EVERY time he eats. He is on previcid now and that seemes to be helping a little bit but I still cannot get him to eat.

I think the hardest part is waiting. Any advice or info or anything would be great. Thanks
 

jaazavala

New member
Cystic Fibrosis has just came up as a possible explination of why my 11 month old daughter is alway sick. I have been reading this forum for about 3hrs now and I have a lot of questions that I am hoping you guys can help me with.

First let me give you a heath history of my daughter. When she was 5 weeks old she started to spit up a little bit of blood. I took her to the doctors right away and we did stool samples to see if she was passing blood all the way through. They came back positive for blood. We then did an ultrasound of her abdomin which was normal and another test that I'm not sure what is called where she drank a thick white liquid (barrium?) and then they scaned her in a kind of x-ray looking machine and we wached the liquid go down into her stomic on a monitor. That was also fine. I was told that she had acid reflux and that the acid caused the bleeding in her esophigus. She was then put on zantac and she hasnt spit up blood since. But she never seemed to be in any pain.

When she was 4months old she had wheezing bronchitis. She was on antibiotics and almost as soon as she was done she developed an ear infection that lasted for 3 months. It took I think 5 different oral anitbioticis and 2 different set of shots to get rid of it. Meanwile she had wheezing bronchitis I think it was 5 times in 4 months. She was hospitalized at 9 months with ashma. At the same time she also had a uti and pharengitis. She has had pharengitis 3 or 4 time also.

She also has a hard time with bm's they are not hard so it does not make sence to me why she has such a hard time going. Alot of the time she throws up from pushing so hard then I change her and it is soft??? I have also notice that a lot of time when she eats I will change her 2 or 3 hrs later and if she ate for example peachs you can tell they where peaches in her diaper like she is not digesting anything.

She only goes 2 to 3 weeks without getting sick. I was going to say with the exception of this last time where she went for almost 6 weeks but she had the flu during that time.

OK so my sister knows someone who has a child with cf and they were talking about him when my sister said that sounds like my daughter so I did some reserch and here I am. The more I read the more I'm convince that my Daughter has cf and posibly my son. I would like to know what you think. The last time I was at the doctor a week ago I asked for a referal to an ashma alergist for my daughter so that she could get on the children with special need insurance to help with doctor bills. Her pediatrician suggested a pulmotologist due to the fact that we already had alergy testing done and it was all negative. So I do not know when her apt will be but it is being set up. I also called my ob today to see if I had the test when I was pregnant to see if I was a carrier and I declined the test so that did me no good but I also called her doc to ask if we could get the sweat test done befor we go to the pulmonoglgist which is about 1 and 1/2 hrs from where we live and so is the facility where they do the testing at. So hopefully she will call me back tomorrow.

My son on the other hand has always been heathy except for sever constant sinus infections. He had his adnoids out 6 weeks ago and had had 2 sinus infections duing that time. He also always complains of his stomic hurting EVERY time he eats. He is on previcid now and that seemes to be helping a little bit but I still cannot get him to eat.

I think the hardest part is waiting. Any advice or info or anything would be great. Thanks
 

jaazavala

New member
Cystic Fibrosis has just came up as a possible explination of why my 11 month old daughter is alway sick. I have been reading this forum for about 3hrs now and I have a lot of questions that I am hoping you guys can help me with.
<br />
<br />First let me give you a heath history of my daughter. When she was 5 weeks old she started to spit up a little bit of blood. I took her to the doctors right away and we did stool samples to see if she was passing blood all the way through. They came back positive for blood. We then did an ultrasound of her abdomin which was normal and another test that I'm not sure what is called where she drank a thick white liquid (barrium?) and then they scaned her in a kind of x-ray looking machine and we wached the liquid go down into her stomic on a monitor. That was also fine. I was told that she had acid reflux and that the acid caused the bleeding in her esophigus. She was then put on zantac and she hasnt spit up blood since. But she never seemed to be in any pain.
<br />
<br />When she was 4months old she had wheezing bronchitis. She was on antibiotics and almost as soon as she was done she developed an ear infection that lasted for 3 months. It took I think 5 different oral anitbioticis and 2 different set of shots to get rid of it. Meanwile she had wheezing bronchitis I think it was 5 times in 4 months. She was hospitalized at 9 months with ashma. At the same time she also had a uti and pharengitis. She has had pharengitis 3 or 4 time also.
<br />
<br />She also has a hard time with bm's they are not hard so it does not make sence to me why she has such a hard time going. Alot of the time she throws up from pushing so hard then I change her and it is soft??? I have also notice that a lot of time when she eats I will change her 2 or 3 hrs later and if she ate for example peachs you can tell they where peaches in her diaper like she is not digesting anything.
<br />
<br />She only goes 2 to 3 weeks without getting sick. I was going to say with the exception of this last time where she went for almost 6 weeks but she had the flu during that time.
<br />
<br />OK so my sister knows someone who has a child with cf and they were talking about him when my sister said that sounds like my daughter so I did some reserch and here I am. The more I read the more I'm convince that my Daughter has cf and posibly my son. I would like to know what you think. The last time I was at the doctor a week ago I asked for a referal to an ashma alergist for my daughter so that she could get on the children with special need insurance to help with doctor bills. Her pediatrician suggested a pulmotologist due to the fact that we already had alergy testing done and it was all negative. So I do not know when her apt will be but it is being set up. I also called my ob today to see if I had the test when I was pregnant to see if I was a carrier and I declined the test so that did me no good but I also called her doc to ask if we could get the sweat test done befor we go to the pulmonoglgist which is about 1 and 1/2 hrs from where we live and so is the facility where they do the testing at. So hopefully she will call me back tomorrow.
<br />
<br />My son on the other hand has always been heathy except for sever constant sinus infections. He had his adnoids out 6 weeks ago and had had 2 sinus infections duing that time. He also always complains of his stomic hurting EVERY time he eats. He is on previcid now and that seemes to be helping a little bit but I still cannot get him to eat.
<br />
<br />I think the hardest part is waiting. Any advice or info or anything would be great. Thanks
 

Alyssa

New member
both kids certainly sound like good candidates for testing...as I'm sure you have already seen over and over on this sight...sweat tests can very often give a false negative...always ask for follow up with FULL genetic testing...searching for ALL known CF genes...which is something in the neighborhood of 1,560....so don't let them check for 98 of them (that is their favorite screening to do)...and it is just that..a screening or sample... it leaves out so many genes that it is hardly reassuring to have a negative result from a screening.

Sounds like you are on the right track so far...keep plugging away..you'll get it sorted out.

Keep in mind that, while CF has some very distinctive symptoms, not everyone presents with classic symptoms ...so do not let a doctor tell you "it doesn't look like CF"...demand full testing.

If you have time, please read my blog for more details about my kids.... they are not your typical case, and it took a lot of years to figure out that they did have CF.

Best wishes, and please keep us updated.
 

Alyssa

New member
both kids certainly sound like good candidates for testing...as I'm sure you have already seen over and over on this sight...sweat tests can very often give a false negative...always ask for follow up with FULL genetic testing...searching for ALL known CF genes...which is something in the neighborhood of 1,560....so don't let them check for 98 of them (that is their favorite screening to do)...and it is just that..a screening or sample... it leaves out so many genes that it is hardly reassuring to have a negative result from a screening.

Sounds like you are on the right track so far...keep plugging away..you'll get it sorted out.

Keep in mind that, while CF has some very distinctive symptoms, not everyone presents with classic symptoms ...so do not let a doctor tell you "it doesn't look like CF"...demand full testing.

If you have time, please read my blog for more details about my kids.... they are not your typical case, and it took a lot of years to figure out that they did have CF.

Best wishes, and please keep us updated.
 

Alyssa

New member
both kids certainly sound like good candidates for testing...as I'm sure you have already seen over and over on this sight...sweat tests can very often give a false negative...always ask for follow up with FULL genetic testing...searching for ALL known CF genes...which is something in the neighborhood of 1,560....so don't let them check for 98 of them (that is their favorite screening to do)...and it is just that..a screening or sample... it leaves out so many genes that it is hardly reassuring to have a negative result from a screening.

Sounds like you are on the right track so far...keep plugging away..you'll get it sorted out.

Keep in mind that, while CF has some very distinctive symptoms, not everyone presents with classic symptoms ...so do not let a doctor tell you "it doesn't look like CF"...demand full testing.

If you have time, please read my blog for more details about my kids.... they are not your typical case, and it took a lot of years to figure out that they did have CF.

Best wishes, and please keep us updated.
 

Alyssa

New member
both kids certainly sound like good candidates for testing...as I'm sure you have already seen over and over on this sight...sweat tests can very often give a false negative...always ask for follow up with FULL genetic testing...searching for ALL known CF genes...which is something in the neighborhood of 1,560....so don't let them check for 98 of them (that is their favorite screening to do)...and it is just that..a screening or sample... it leaves out so many genes that it is hardly reassuring to have a negative result from a screening.

Sounds like you are on the right track so far...keep plugging away..you'll get it sorted out.

Keep in mind that, while CF has some very distinctive symptoms, not everyone presents with classic symptoms ...so do not let a doctor tell you "it doesn't look like CF"...demand full testing.

If you have time, please read my blog for more details about my kids.... they are not your typical case, and it took a lot of years to figure out that they did have CF.

Best wishes, and please keep us updated.
 

Alyssa

New member
both kids certainly sound like good candidates for testing...as I'm sure you have already seen over and over on this sight...sweat tests can very often give a false negative...always ask for follow up with FULL genetic testing...searching for ALL known CF genes...which is something in the neighborhood of 1,560....so don't let them check for 98 of them (that is their favorite screening to do)...and it is just that..a screening or sample... it leaves out so many genes that it is hardly reassuring to have a negative result from a screening.
<br />
<br />Sounds like you are on the right track so far...keep plugging away..you'll get it sorted out.
<br />
<br />Keep in mind that, while CF has some very distinctive symptoms, not everyone presents with classic symptoms ...so do not let a doctor tell you "it doesn't look like CF"...demand full testing.
<br />
<br />If you have time, please read my blog for more details about my kids.... they are not your typical case, and it took a lot of years to figure out that they did have CF.
<br />
<br />Best wishes, and please keep us updated.
 

kaylasdad

New member
Hi Ashley,
Let me start by giving you a big cyber ((((hug)))) , sorry you are going through all of this, my heart goes out to you. It sounds like your on the right track getting them a sweat test. Just so you know there are alot of people on here with normal sweat test numbers with cf. Sometimes they don't get a good reading. So you should push for full genetic testing with the full panel. There are over 1500 mutations .But the sweat test is a good start, there are alot of false neg but not to many false pos.
You came to the right place , there are alot of great people here that are going to give you alot of good advice. Hang in there kiddo
you will be my prayers.
 

kaylasdad

New member
Hi Ashley,
Let me start by giving you a big cyber ((((hug)))) , sorry you are going through all of this, my heart goes out to you. It sounds like your on the right track getting them a sweat test. Just so you know there are alot of people on here with normal sweat test numbers with cf. Sometimes they don't get a good reading. So you should push for full genetic testing with the full panel. There are over 1500 mutations .But the sweat test is a good start, there are alot of false neg but not to many false pos.
You came to the right place , there are alot of great people here that are going to give you alot of good advice. Hang in there kiddo
you will be my prayers.
 

kaylasdad

New member
Hi Ashley,
Let me start by giving you a big cyber ((((hug)))) , sorry you are going through all of this, my heart goes out to you. It sounds like your on the right track getting them a sweat test. Just so you know there are alot of people on here with normal sweat test numbers with cf. Sometimes they don't get a good reading. So you should push for full genetic testing with the full panel. There are over 1500 mutations .But the sweat test is a good start, there are alot of false neg but not to many false pos.
You came to the right place , there are alot of great people here that are going to give you alot of good advice. Hang in there kiddo
you will be my prayers.
 

kaylasdad

New member
Hi Ashley,
Let me start by giving you a big cyber ((((hug)))) , sorry you are going through all of this, my heart goes out to you. It sounds like your on the right track getting them a sweat test. Just so you know there are alot of people on here with normal sweat test numbers with cf. Sometimes they don't get a good reading. So you should push for full genetic testing with the full panel. There are over 1500 mutations .But the sweat test is a good start, there are alot of false neg but not to many false pos.
You came to the right place , there are alot of great people here that are going to give you alot of good advice. Hang in there kiddo
you will be my prayers.
 

kaylasdad

New member
Hi Ashley,
<br />Let me start by giving you a big cyber ((((hug)))) , sorry you are going through all of this, my heart goes out to you. It sounds like your on the right track getting them a sweat test. Just so you know there are alot of people on here with normal sweat test numbers with cf. Sometimes they don't get a good reading. So you should push for full genetic testing with the full panel. There are over 1500 mutations .But the sweat test is a good start, there are alot of false neg but not to many false pos.
<br />You came to the right place , there are alot of great people here that are going to give you alot of good advice. Hang in there kiddo
<br />you will be my prayers.
 

jaazavala

New member
Alyssa

I just wanted to let you know that I have already read your blog. I am going to push this with the doctors because there is obviously something going on that is making my daughter soooo sick. I would not have the apt. with the pulmonologist if I had not asked for it. I belive that sometimes a mother can be a childs best doctor.
 

jaazavala

New member
Alyssa

I just wanted to let you know that I have already read your blog. I am going to push this with the doctors because there is obviously something going on that is making my daughter soooo sick. I would not have the apt. with the pulmonologist if I had not asked for it. I belive that sometimes a mother can be a childs best doctor.
 

jaazavala

New member
Alyssa

I just wanted to let you know that I have already read your blog. I am going to push this with the doctors because there is obviously something going on that is making my daughter soooo sick. I would not have the apt. with the pulmonologist if I had not asked for it. I belive that sometimes a mother can be a childs best doctor.
 

jaazavala

New member
Alyssa

I just wanted to let you know that I have already read your blog. I am going to push this with the doctors because there is obviously something going on that is making my daughter soooo sick. I would not have the apt. with the pulmonologist if I had not asked for it. I belive that sometimes a mother can be a childs best doctor.
 

jaazavala

New member
Alyssa
<br />
<br />I just wanted to let you know that I have already read your blog. I am going to push this with the doctors because there is obviously something going on that is making my daughter soooo sick. I would not have the apt. with the pulmonologist if I had not asked for it. I belive that sometimes a mother can be a childs best doctor.
 
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