New with questions

[HM3Taylor]

HI,

My daughter had Chiari 1 Malformation (decompressed Aug'05), failure to thrive, feeding disorder, nissinfunduplication with feeding tube, slow GI motility, and asthma. She had whooping cough as a baby and an on going cough, periodically, ever since. Over the last 6 months to a year I don't remember her not having the cough. We moved on to a cough variant asthma, but the cough persists except when on oral steroids. Periodically she gets high fevers with the cough that goes away after 2-3 days. We are waiting on an MRI because she is now showing symptoms that her Chiari may have gone bad again. She had a coughing fit that gave her a high fever and they sent her to a pulmonologist. They needed to be sure that she is safe to sedate when we can get her in for the MRI. He did a lot of tests on her and scheduled her for a sweat test. He said that since she was born in another state and he didn't know their screenings he would feel better just having that negative test in her chart. Well we did the sweat test today and her numbers were 44. He said we will retest her in 1 month. He also said that an immunization that she had as a baby did not seem to take. She needed a HIB booster and a Pneumovax to immediatly protect her lungs. I don't understand why it didn't take. Can anyone explain this to me? Any of this sound like CF to anyone? What are our chances of adding CF to her list of conditions? Thanks

Carey
Alexa 5
AJ 8

 

[HM3Taylor]

HI,

My daughter had Chiari 1 Malformation (decompressed Aug'05), failure to thrive, feeding disorder, nissinfunduplication with feeding tube, slow GI motility, and asthma. She had whooping cough as a baby and an on going cough, periodically, ever since. Over the last 6 months to a year I don't remember her not having the cough. We moved on to a cough variant asthma, but the cough persists except when on oral steroids. Periodically she gets high fevers with the cough that goes away after 2-3 days. We are waiting on an MRI because she is now showing symptoms that her Chiari may have gone bad again. She had a coughing fit that gave her a high fever and they sent her to a pulmonologist. They needed to be sure that she is safe to sedate when we can get her in for the MRI. He did a lot of tests on her and scheduled her for a sweat test. He said that since she was born in another state and he didn't know their screenings he would feel better just having that negative test in her chart. Well we did the sweat test today and her numbers were 44. He said we will retest her in 1 month. He also said that an immunization that she had as a baby did not seem to take. She needed a HIB booster and a Pneumovax to immediatly protect her lungs. I don't understand why it didn't take. Can anyone explain this to me? Any of this sound like CF to anyone? What are our chances of adding CF to her list of conditions? Thanks

Carey
Alexa 5
AJ 8

 

[HM3Taylor]

HI,

My daughter had Chiari 1 Malformation (decompressed Aug'05), failure to thrive, feeding disorder, nissinfunduplication with feeding tube, slow GI motility, and asthma. She had whooping cough as a baby and an on going cough, periodically, ever since. Over the last 6 months to a year I don't remember her not having the cough. We moved on to a cough variant asthma, but the cough persists except when on oral steroids. Periodically she gets high fevers with the cough that goes away after 2-3 days. We are waiting on an MRI because she is now showing symptoms that her Chiari may have gone bad again. She had a coughing fit that gave her a high fever and they sent her to a pulmonologist. They needed to be sure that she is safe to sedate when we can get her in for the MRI. He did a lot of tests on her and scheduled her for a sweat test. He said that since she was born in another state and he didn't know their screenings he would feel better just having that negative test in her chart. Well we did the sweat test today and her numbers were 44. He said we will retest her in 1 month. He also said that an immunization that she had as a baby did not seem to take. She needed a HIB booster and a Pneumovax to immediatly protect her lungs. I don't understand why it didn't take. Can anyone explain this to me? Any of this sound like CF to anyone? What are our chances of adding CF to her list of conditions? Thanks

Carey
Alexa 5
AJ 8

 

[HM3Taylor]

HI,

My daughter had Chiari 1 Malformation (decompressed Aug'05), failure to thrive, feeding disorder, nissinfunduplication with feeding tube, slow GI motility, and asthma. She had whooping cough as a baby and an on going cough, periodically, ever since. Over the last 6 months to a year I don't remember her not having the cough. We moved on to a cough variant asthma, but the cough persists except when on oral steroids. Periodically she gets high fevers with the cough that goes away after 2-3 days. We are waiting on an MRI because she is now showing symptoms that her Chiari may have gone bad again. She had a coughing fit that gave her a high fever and they sent her to a pulmonologist. They needed to be sure that she is safe to sedate when we can get her in for the MRI. He did a lot of tests on her and scheduled her for a sweat test. He said that since she was born in another state and he didn't know their screenings he would feel better just having that negative test in her chart. Well we did the sweat test today and her numbers were 44. He said we will retest her in 1 month. He also said that an immunization that she had as a baby did not seem to take. She needed a HIB booster and a Pneumovax to immediatly protect her lungs. I don't understand why it didn't take. Can anyone explain this to me? Any of this sound like CF to anyone? What are our chances of adding CF to her list of conditions? Thanks

Carey
Alexa 5
AJ 8

 

[HM3Taylor]

HI,
<br />
<br />My daughter had Chiari 1 Malformation (decompressed Aug'05), failure to thrive, feeding disorder, nissinfunduplication with feeding tube, slow GI motility, and asthma. She had whooping cough as a baby and an on going cough, periodically, ever since. Over the last 6 months to a year I don't remember her not having the cough. We moved on to a cough variant asthma, but the cough persists except when on oral steroids. Periodically she gets high fevers with the cough that goes away after 2-3 days. We are waiting on an MRI because she is now showing symptoms that her Chiari may have gone bad again. She had a coughing fit that gave her a high fever and they sent her to a pulmonologist. They needed to be sure that she is safe to sedate when we can get her in for the MRI. He did a lot of tests on her and scheduled her for a sweat test. He said that since she was born in another state and he didn't know their screenings he would feel better just having that negative test in her chart. Well we did the sweat test today and her numbers were 44. He said we will retest her in 1 month. He also said that an immunization that she had as a baby did not seem to take. She needed a HIB booster and a Pneumovax to immediatly protect her lungs. I don't understand why it didn't take. Can anyone explain this to me? Any of this sound like CF to anyone? What are our chances of adding CF to her list of conditions? Thanks
<br />
<br />Carey
<br />Alexa 5
<br />AJ 8

 

[Ratatosk]

Some of her symptoms are similar to CF. Does she have any digestive issues? Another consideration is Primary Immune Deficiency -- hypogammaglobulinemia -- based on the vaccination info. However, the one person I know with those types of issues also has a variant form of CF.

 

[Ratatosk]

Some of her symptoms are similar to CF. Does she have any digestive issues? Another consideration is Primary Immune Deficiency -- hypogammaglobulinemia -- based on the vaccination info. However, the one person I know with those types of issues also has a variant form of CF.

 

[Ratatosk]

Some of her symptoms are similar to CF. Does she have any digestive issues? Another consideration is Primary Immune Deficiency -- hypogammaglobulinemia -- based on the vaccination info. However, the one person I know with those types of issues also has a variant form of CF.

 

[Ratatosk]

Some of her symptoms are similar to CF. Does she have any digestive issues? Another consideration is Primary Immune Deficiency -- hypogammaglobulinemia -- based on the vaccination info. However, the one person I know with those types of issues also has a variant form of CF.

 

[Ratatosk]

Some of her symptoms are similar to CF. Does she have any digestive issues? Another consideration is Primary Immune Deficiency -- hypogammaglobulinemia -- based on the vaccination info. However, the one person I know with those types of issues also has a variant form of CF.

 

[hmw]

Given all the respiratory symptoms & asthma dx, it sounds like standard practice that your dd is getting the Pneumovax shot even if she got the Prevnar ones as a baby/toddler. According to the recommended vaccination schedule, babies/toddlers get the Prevnar one early, which protects against about 5 strains of pneumonia and then kids with chronic health conditions only should get the Pneumovax when they get a little older. This adds protection against about 23 strains and will be repeated again in 5yrs.

Did she get all 4 of the HIB shots by the time she was 2 and if so, did the dr. do labwork to check her antibodies? I hope the booster works to get her immune response where it should be.

All that said, I'm so sorry she's had to go through so much already. If the Chiari was bad enough to require being drained she must have been really been going through a lot... what an ordeal for a baby. <img src="i/expressions/face-icon-small-sad.gif" border="0"> I hope she doesn't need more surgery; I'm sorry she is having more symptoms again. My dd has neuro and developmental issues as well as the cf; I can empathize with raising a child with multiple special needs.

I hope you've been able to take her to a good lab for the sweat tests: one accredited by the Cystic Fibrosis Foundation (part of a CF clinic) is one that is most likely to give you accurate results vs. a place that rarely does the test and has little experience interpreting it. I am glad that you are repeating the test with the borderline result you got.

 

[hmw]

Given all the respiratory symptoms & asthma dx, it sounds like standard practice that your dd is getting the Pneumovax shot even if she got the Prevnar ones as a baby/toddler. According to the recommended vaccination schedule, babies/toddlers get the Prevnar one early, which protects against about 5 strains of pneumonia and then kids with chronic health conditions only should get the Pneumovax when they get a little older. This adds protection against about 23 strains and will be repeated again in 5yrs.

Did she get all 4 of the HIB shots by the time she was 2 and if so, did the dr. do labwork to check her antibodies? I hope the booster works to get her immune response where it should be.

All that said, I'm so sorry she's had to go through so much already. If the Chiari was bad enough to require being drained she must have been really been going through a lot... what an ordeal for a baby. <img src="i/expressions/face-icon-small-sad.gif" border="0"> I hope she doesn't need more surgery; I'm sorry she is having more symptoms again. My dd has neuro and developmental issues as well as the cf; I can empathize with raising a child with multiple special needs.

I hope you've been able to take her to a good lab for the sweat tests: one accredited by the Cystic Fibrosis Foundation (part of a CF clinic) is one that is most likely to give you accurate results vs. a place that rarely does the test and has little experience interpreting it. I am glad that you are repeating the test with the borderline result you got.

 

[hmw]

Given all the respiratory symptoms & asthma dx, it sounds like standard practice that your dd is getting the Pneumovax shot even if she got the Prevnar ones as a baby/toddler. According to the recommended vaccination schedule, babies/toddlers get the Prevnar one early, which protects against about 5 strains of pneumonia and then kids with chronic health conditions only should get the Pneumovax when they get a little older. This adds protection against about 23 strains and will be repeated again in 5yrs.

Did she get all 4 of the HIB shots by the time she was 2 and if so, did the dr. do labwork to check her antibodies? I hope the booster works to get her immune response where it should be.

All that said, I'm so sorry she's had to go through so much already. If the Chiari was bad enough to require being drained she must have been really been going through a lot... what an ordeal for a baby. <img src="i/expressions/face-icon-small-sad.gif" border="0"> I hope she doesn't need more surgery; I'm sorry she is having more symptoms again. My dd has neuro and developmental issues as well as the cf; I can empathize with raising a child with multiple special needs.

I hope you've been able to take her to a good lab for the sweat tests: one accredited by the Cystic Fibrosis Foundation (part of a CF clinic) is one that is most likely to give you accurate results vs. a place that rarely does the test and has little experience interpreting it. I am glad that you are repeating the test with the borderline result you got.

 

[hmw]

Given all the respiratory symptoms & asthma dx, it sounds like standard practice that your dd is getting the Pneumovax shot even if she got the Prevnar ones as a baby/toddler. According to the recommended vaccination schedule, babies/toddlers get the Prevnar one early, which protects against about 5 strains of pneumonia and then kids with chronic health conditions only should get the Pneumovax when they get a little older. This adds protection against about 23 strains and will be repeated again in 5yrs.

Did she get all 4 of the HIB shots by the time she was 2 and if so, did the dr. do labwork to check her antibodies? I hope the booster works to get her immune response where it should be.

All that said, I'm so sorry she's had to go through so much already. If the Chiari was bad enough to require being drained she must have been really been going through a lot... what an ordeal for a baby. <img src="i/expressions/face-icon-small-sad.gif" border="0"> I hope she doesn't need more surgery; I'm sorry she is having more symptoms again. My dd has neuro and developmental issues as well as the cf; I can empathize with raising a child with multiple special needs.

I hope you've been able to take her to a good lab for the sweat tests: one accredited by the Cystic Fibrosis Foundation (part of a CF clinic) is one that is most likely to give you accurate results vs. a place that rarely does the test and has little experience interpreting it. I am glad that you are repeating the test with the borderline result you got.

 

[hmw]

Given all the respiratory symptoms & asthma dx, it sounds like standard practice that your dd is getting the Pneumovax shot even if she got the Prevnar ones as a baby/toddler. According to the recommended vaccination schedule, babies/toddlers get the Prevnar one early, which protects against about 5 strains of pneumonia and then kids with chronic health conditions only should get the Pneumovax when they get a little older. This adds protection against about 23 strains and will be repeated again in 5yrs.
<br />
<br />Did she get all 4 of the HIB shots by the time she was 2 and if so, did the dr. do labwork to check her antibodies? I hope the booster works to get her immune response where it should be.
<br />
<br />All that said, I'm so sorry she's had to go through so much already. If the Chiari was bad enough to require being drained she must have been really been going through a lot... what an ordeal for a baby. <img src="i/expressions/face-icon-small-sad.gif" border="0"> I hope she doesn't need more surgery; I'm sorry she is having more symptoms again. My dd has neuro and developmental issues as well as the cf; I can empathize with raising a child with multiple special needs.
<br />
<br />I hope you've been able to take her to a good lab for the sweat tests: one accredited by the Cystic Fibrosis Foundation (part of a CF clinic) is one that is most likely to give you accurate results vs. a place that rarely does the test and has little experience interpreting it. I am glad that you are repeating the test with the borderline result you got.

 

[HM3Taylor]

Yes she is seen at Hershey Medical Center in Hershey, PA. She does have a lot of GI issues! Slow GI motility, she had severe reflux that required a surgical fix and she had a feeding tube placed for the recovery of that. Then they learned that she doesn't gain weight so they will not remove it and she has a feeding pump to assist in adding calories to what little she does eat by mouth and to help with stretching her tiny tummy. The pulmonologist is going to redo her labs in a month to insure that her booster took. She did recieve all 4 HIB vaccines as a baby. So I guess that maybe the good side of this, if she does have a form of CF, then maybe all they need to do is give her some enzymes and extra vitamins and she will start eatting better and gaining weight??? She will have her MRI on Dec 7th to determine if her Chiari is bad again and we will see what needs done. But she is so sick right now and so full of symptoms that I kinda hope that her Chiari is bad. We have delt with that in the past, her brother has had his redone, and atleast it won't be something new...like this. But I am Thankful for my kids, that they can attend school and be ahead in their classes. That they can go play with their friends and be "normal" children. There are many that are worse off and I count my blessings everyday.

 

[HM3Taylor]

Yes she is seen at Hershey Medical Center in Hershey, PA. She does have a lot of GI issues! Slow GI motility, she had severe reflux that required a surgical fix and she had a feeding tube placed for the recovery of that. Then they learned that she doesn't gain weight so they will not remove it and she has a feeding pump to assist in adding calories to what little she does eat by mouth and to help with stretching her tiny tummy. The pulmonologist is going to redo her labs in a month to insure that her booster took. She did recieve all 4 HIB vaccines as a baby. So I guess that maybe the good side of this, if she does have a form of CF, then maybe all they need to do is give her some enzymes and extra vitamins and she will start eatting better and gaining weight??? She will have her MRI on Dec 7th to determine if her Chiari is bad again and we will see what needs done. But she is so sick right now and so full of symptoms that I kinda hope that her Chiari is bad. We have delt with that in the past, her brother has had his redone, and atleast it won't be something new...like this. But I am Thankful for my kids, that they can attend school and be ahead in their classes. That they can go play with their friends and be "normal" children. There are many that are worse off and I count my blessings everyday.

 

[HM3Taylor]

Yes she is seen at Hershey Medical Center in Hershey, PA. She does have a lot of GI issues! Slow GI motility, she had severe reflux that required a surgical fix and she had a feeding tube placed for the recovery of that. Then they learned that she doesn't gain weight so they will not remove it and she has a feeding pump to assist in adding calories to what little she does eat by mouth and to help with stretching her tiny tummy. The pulmonologist is going to redo her labs in a month to insure that her booster took. She did recieve all 4 HIB vaccines as a baby. So I guess that maybe the good side of this, if she does have a form of CF, then maybe all they need to do is give her some enzymes and extra vitamins and she will start eatting better and gaining weight??? She will have her MRI on Dec 7th to determine if her Chiari is bad again and we will see what needs done. But she is so sick right now and so full of symptoms that I kinda hope that her Chiari is bad. We have delt with that in the past, her brother has had his redone, and atleast it won't be something new...like this. But I am Thankful for my kids, that they can attend school and be ahead in their classes. That they can go play with their friends and be "normal" children. There are many that are worse off and I count my blessings everyday.

 

[HM3Taylor]

Yes she is seen at Hershey Medical Center in Hershey, PA. She does have a lot of GI issues! Slow GI motility, she had severe reflux that required a surgical fix and she had a feeding tube placed for the recovery of that. Then they learned that she doesn't gain weight so they will not remove it and she has a feeding pump to assist in adding calories to what little she does eat by mouth and to help with stretching her tiny tummy. The pulmonologist is going to redo her labs in a month to insure that her booster took. She did recieve all 4 HIB vaccines as a baby. So I guess that maybe the good side of this, if she does have a form of CF, then maybe all they need to do is give her some enzymes and extra vitamins and she will start eatting better and gaining weight??? She will have her MRI on Dec 7th to determine if her Chiari is bad again and we will see what needs done. But she is so sick right now and so full of symptoms that I kinda hope that her Chiari is bad. We have delt with that in the past, her brother has had his redone, and atleast it won't be something new...like this. But I am Thankful for my kids, that they can attend school and be ahead in their classes. That they can go play with their friends and be "normal" children. There are many that are worse off and I count my blessings everyday.

 

[HM3Taylor]

Yes she is seen at Hershey Medical Center in Hershey, PA. She does have a lot of GI issues! Slow GI motility, she had severe reflux that required a surgical fix and she had a feeding tube placed for the recovery of that. Then they learned that she doesn't gain weight so they will not remove it and she has a feeding pump to assist in adding calories to what little she does eat by mouth and to help with stretching her tiny tummy. The pulmonologist is going to redo her labs in a month to insure that her booster took. She did recieve all 4 HIB vaccines as a baby. So I guess that maybe the good side of this, if she does have a form of CF, then maybe all they need to do is give her some enzymes and extra vitamins and she will start eatting better and gaining weight??? She will have her MRI on Dec 7th to determine if her Chiari is bad again and we will see what needs done. But she is so sick right now and so full of symptoms that I kinda hope that her Chiari is bad. We have delt with that in the past, her brother has had his redone, and atleast it won't be something new...like this. But I am Thankful for my kids, that they can attend school and be ahead in their classes. That they can go play with their friends and be "normal" children. There are many that are worse off and I count my blessings everyday.