More than CF

pnhuffman · May 23, 2008

Has anyone else been diagnosed with other things along with their Cystic Fibrosis. Such as Austin has Cystic Fibrosis, Arnold Chiari Malformation, VP shunted hydrocephalus and now in the process of ADHD.

I don't want him to have anything else but I am really leaning towards the ADHD with him. He went to The Developemental Pediatrics yesterday for his yearly follow-up and after a long discussion with his Doctor we are going to fill out the questionairres and have the school fill it out and go from there. I told her that his teacher before that she ahs had worse. But the Doctor said "I have seen a lot worse too but that doesn't mean he doesn't have it." She also told me that his teacher might be sugar coating it and kind of letting things go because of the CF. The feeling sorry for him! and that she should try not to do that.

I kept telling the Doctor that I didn't know if it was me not being able to handle things or if it was him. She kept reassuring me that it wasn't me. But I would have rather that she would have told me yes it's you and here's what you can do. LOL!

He has been doing fairly well with his grades but that was with a lot of one on one since he missed so much school this year.

He goes to see the The Doctors nurse practioner on May 13th. I just realized Friday the 13th. Oh No! <img src="i/expressions/face-icon-small-wink.gif" border="0">

pnhuffman · May 23, 2008

Has anyone else been diagnosed with other things along with their Cystic Fibrosis. Such as Austin has Cystic Fibrosis, Arnold Chiari Malformation, VP shunted hydrocephalus and now in the process of ADHD.

I don't want him to have anything else but I am really leaning towards the ADHD with him. He went to The Developemental Pediatrics yesterday for his yearly follow-up and after a long discussion with his Doctor we are going to fill out the questionairres and have the school fill it out and go from there. I told her that his teacher before that she ahs had worse. But the Doctor said "I have seen a lot worse too but that doesn't mean he doesn't have it." She also told me that his teacher might be sugar coating it and kind of letting things go because of the CF. The feeling sorry for him! and that she should try not to do that.

I kept telling the Doctor that I didn't know if it was me not being able to handle things or if it was him. She kept reassuring me that it wasn't me. But I would have rather that she would have told me yes it's you and here's what you can do. LOL!

He has been doing fairly well with his grades but that was with a lot of one on one since he missed so much school this year.

He goes to see the The Doctors nurse practioner on May 13th. I just realized Friday the 13th. Oh No! <img src="i/expressions/face-icon-small-wink.gif" border="0">

pnhuffman · May 23, 2008

Has anyone else been diagnosed with other things along with their Cystic Fibrosis. Such as Austin has Cystic Fibrosis, Arnold Chiari Malformation, VP shunted hydrocephalus and now in the process of ADHD.

I don't want him to have anything else but I am really leaning towards the ADHD with him. He went to The Developemental Pediatrics yesterday for his yearly follow-up and after a long discussion with his Doctor we are going to fill out the questionairres and have the school fill it out and go from there. I told her that his teacher before that she ahs had worse. But the Doctor said "I have seen a lot worse too but that doesn't mean he doesn't have it." She also told me that his teacher might be sugar coating it and kind of letting things go because of the CF. The feeling sorry for him! and that she should try not to do that.

I kept telling the Doctor that I didn't know if it was me not being able to handle things or if it was him. She kept reassuring me that it wasn't me. But I would have rather that she would have told me yes it's you and here's what you can do. LOL!

He has been doing fairly well with his grades but that was with a lot of one on one since he missed so much school this year.

He goes to see the The Doctors nurse practioner on May 13th. I just realized Friday the 13th. Oh No! <img src="i/expressions/face-icon-small-wink.gif" border="0">

pnhuffman · May 23, 2008

Has anyone else been diagnosed with other things along with their Cystic Fibrosis. Such as Austin has Cystic Fibrosis, Arnold Chiari Malformation, VP shunted hydrocephalus and now in the process of ADHD.

I don't want him to have anything else but I am really leaning towards the ADHD with him. He went to The Developemental Pediatrics yesterday for his yearly follow-up and after a long discussion with his Doctor we are going to fill out the questionairres and have the school fill it out and go from there. I told her that his teacher before that she ahs had worse. But the Doctor said "I have seen a lot worse too but that doesn't mean he doesn't have it." She also told me that his teacher might be sugar coating it and kind of letting things go because of the CF. The feeling sorry for him! and that she should try not to do that.

I kept telling the Doctor that I didn't know if it was me not being able to handle things or if it was him. She kept reassuring me that it wasn't me. But I would have rather that she would have told me yes it's you and here's what you can do. LOL!

He has been doing fairly well with his grades but that was with a lot of one on one since he missed so much school this year.

He goes to see the The Doctors nurse practioner on May 13th. I just realized Friday the 13th. Oh No! <img src="i/expressions/face-icon-small-wink.gif" border="0">

pnhuffman · May 23, 2008

Has anyone else been diagnosed with other things along with their Cystic Fibrosis. Such as Austin has Cystic Fibrosis, Arnold Chiari Malformation, VP shunted hydrocephalus and now in the process of ADHD.
 
 I don't want him to have anything else but I am really leaning towards the ADHD with him. He went to The Developemental Pediatrics yesterday for his yearly follow-up and after a long discussion with his Doctor we are going to fill out the questionairres and have the school fill it out and go from there. I told her that his teacher before that she ahs had worse. But the Doctor said "I have seen a lot worse too but that doesn't mean he doesn't have it." She also told me that his teacher might be sugar coating it and kind of letting things go because of the CF. The feeling sorry for him! and that she should try not to do that.
 
 I kept telling the Doctor that I didn't know if it was me not being able to handle things or if it was him. She kept reassuring me that it wasn't me. But I would have rather that she would have told me yes it's you and here's what you can do. LOL!
 
 He has been doing fairly well with his grades but that was with a lot of one on one since he missed so much school this year.
 
 He goes to see the The Doctors nurse practioner on May 13th. I just realized Friday the 13th. Oh No! <img src="i/expressions/face-icon-small-wink.gif" border="0">

zeeannie · May 23, 2008

Yeah, Sophie has ADD, too. With all the meds she's currently taking, we had no qualms about starting another! <img src="i/expressions/face-icon-small-wink.gif" border="0"> She's taking Strattera, which I think was originally an antidepressant. We stayed away from the stimulant ADD drugs as they suppress appetite. It took about three months to really see results, as opposed to immediate results with the stimulants, but of course she's still hungry!
One thing that helped for school was coffee. I used to give her a cup of sweet milky coffee with breakfast in the morning before school. The caffeine helped her focus, so as long as it was in her system she operated a little better.
Life is a lot less stressful now that we've got it handled. Keep on it, everything you can do that helps your day to day is priceless. At this point, what's one more med??

zeeannie · May 23, 2008

Yeah, Sophie has ADD, too. With all the meds she's currently taking, we had no qualms about starting another! <img src="i/expressions/face-icon-small-wink.gif" border="0"> She's taking Strattera, which I think was originally an antidepressant. We stayed away from the stimulant ADD drugs as they suppress appetite. It took about three months to really see results, as opposed to immediate results with the stimulants, but of course she's still hungry!
One thing that helped for school was coffee. I used to give her a cup of sweet milky coffee with breakfast in the morning before school. The caffeine helped her focus, so as long as it was in her system she operated a little better.
Life is a lot less stressful now that we've got it handled. Keep on it, everything you can do that helps your day to day is priceless. At this point, what's one more med??

zeeannie · May 23, 2008

Yeah, Sophie has ADD, too. With all the meds she's currently taking, we had no qualms about starting another! <img src="i/expressions/face-icon-small-wink.gif" border="0"> She's taking Strattera, which I think was originally an antidepressant. We stayed away from the stimulant ADD drugs as they suppress appetite. It took about three months to really see results, as opposed to immediate results with the stimulants, but of course she's still hungry!
One thing that helped for school was coffee. I used to give her a cup of sweet milky coffee with breakfast in the morning before school. The caffeine helped her focus, so as long as it was in her system she operated a little better.
Life is a lot less stressful now that we've got it handled. Keep on it, everything you can do that helps your day to day is priceless. At this point, what's one more med??

zeeannie · May 23, 2008

Yeah, Sophie has ADD, too. With all the meds she's currently taking, we had no qualms about starting another! <img src="i/expressions/face-icon-small-wink.gif" border="0"> She's taking Strattera, which I think was originally an antidepressant. We stayed away from the stimulant ADD drugs as they suppress appetite. It took about three months to really see results, as opposed to immediate results with the stimulants, but of course she's still hungry!
One thing that helped for school was coffee. I used to give her a cup of sweet milky coffee with breakfast in the morning before school. The caffeine helped her focus, so as long as it was in her system she operated a little better.
Life is a lot less stressful now that we've got it handled. Keep on it, everything you can do that helps your day to day is priceless. At this point, what's one more med??

zeeannie · May 23, 2008

Yeah, Sophie has ADD, too. With all the meds she's currently taking, we had no qualms about starting another! <img src="i/expressions/face-icon-small-wink.gif" border="0"> She's taking Strattera, which I think was originally an antidepressant. We stayed away from the stimulant ADD drugs as they suppress appetite. It took about three months to really see results, as opposed to immediate results with the stimulants, but of course she's still hungry!
 One thing that helped for school was coffee. I used to give her a cup of sweet milky coffee with breakfast in the morning before school. The caffeine helped her focus, so as long as it was in her system she operated a little better.
 Life is a lot less stressful now that we've got it handled. Keep on it, everything you can do that helps your day to day is priceless. At this point, what's one more med??

Huntersmom · May 23, 2008

My son Hunter was born with Bi-lateral cleft lip and palate and we didn't know he had CF until he was about 5 months he was already in the PICU at children's for respiratory failure and had at 3 months had a Fundo and G-Tube placed because he was failure to thrive .Unfortunately his neonatologist at that time keep saying he was okay but at 3months and not even birth wieght I finaly called a gastroenlogist and they got me in fast they said if I hadn't called he would have died soon .Overall he was born okay until he went into cardiac arrest then he sustained brain damage which caused Cerebral Palsy and global developmental delay, along with Cf ,and Microcephaly,and severe crossed was just diagnosed but that was good news because they thought he had optical atrophy which could have caused him to lose his eye eventually so crossyed we will take . Hunter is 5 years old will be 6 in December. He just graduated from developmental pre-school and will be going into Kindergaden but will be homebound for this year and also went through homebound devolpmental pre-k . Our main concern was getting all his things done and going to school cannot be done he also has therapist PT,OT and Speech he cannot talk and still doesn't eat by mouth he is tube feed every 2 hours . So we have more than CF to deal with but everyday seems to be more a battle with insurance and school than with taking care of his medical regimen. Hope things' go well for you though sounds like you have your hands full as well ..

Sonya mom of Hunter 5/CF and Kayla 10/no Cf

Huntersmom · May 23, 2008

My son Hunter was born with Bi-lateral cleft lip and palate and we didn't know he had CF until he was about 5 months he was already in the PICU at children's for respiratory failure and had at 3 months had a Fundo and G-Tube placed because he was failure to thrive .Unfortunately his neonatologist at that time keep saying he was okay but at 3months and not even birth wieght I finaly called a gastroenlogist and they got me in fast they said if I hadn't called he would have died soon .Overall he was born okay until he went into cardiac arrest then he sustained brain damage which caused Cerebral Palsy and global developmental delay, along with Cf ,and Microcephaly,and severe crossed was just diagnosed but that was good news because they thought he had optical atrophy which could have caused him to lose his eye eventually so crossyed we will take . Hunter is 5 years old will be 6 in December. He just graduated from developmental pre-school and will be going into Kindergaden but will be homebound for this year and also went through homebound devolpmental pre-k . Our main concern was getting all his things done and going to school cannot be done he also has therapist PT,OT and Speech he cannot talk and still doesn't eat by mouth he is tube feed every 2 hours . So we have more than CF to deal with but everyday seems to be more a battle with insurance and school than with taking care of his medical regimen. Hope things' go well for you though sounds like you have your hands full as well ..

Sonya mom of Hunter 5/CF and Kayla 10/no Cf

Huntersmom · May 23, 2008

My son Hunter was born with Bi-lateral cleft lip and palate and we didn't know he had CF until he was about 5 months he was already in the PICU at children's for respiratory failure and had at 3 months had a Fundo and G-Tube placed because he was failure to thrive .Unfortunately his neonatologist at that time keep saying he was okay but at 3months and not even birth wieght I finaly called a gastroenlogist and they got me in fast they said if I hadn't called he would have died soon .Overall he was born okay until he went into cardiac arrest then he sustained brain damage which caused Cerebral Palsy and global developmental delay, along with Cf ,and Microcephaly,and severe crossed was just diagnosed but that was good news because they thought he had optical atrophy which could have caused him to lose his eye eventually so crossyed we will take . Hunter is 5 years old will be 6 in December. He just graduated from developmental pre-school and will be going into Kindergaden but will be homebound for this year and also went through homebound devolpmental pre-k . Our main concern was getting all his things done and going to school cannot be done he also has therapist PT,OT and Speech he cannot talk and still doesn't eat by mouth he is tube feed every 2 hours . So we have more than CF to deal with but everyday seems to be more a battle with insurance and school than with taking care of his medical regimen. Hope things' go well for you though sounds like you have your hands full as well ..

Sonya mom of Hunter 5/CF and Kayla 10/no Cf

Huntersmom · May 23, 2008

My son Hunter was born with Bi-lateral cleft lip and palate and we didn't know he had CF until he was about 5 months he was already in the PICU at children's for respiratory failure and had at 3 months had a Fundo and G-Tube placed because he was failure to thrive .Unfortunately his neonatologist at that time keep saying he was okay but at 3months and not even birth wieght I finaly called a gastroenlogist and they got me in fast they said if I hadn't called he would have died soon .Overall he was born okay until he went into cardiac arrest then he sustained brain damage which caused Cerebral Palsy and global developmental delay, along with Cf ,and Microcephaly,and severe crossed was just diagnosed but that was good news because they thought he had optical atrophy which could have caused him to lose his eye eventually so crossyed we will take . Hunter is 5 years old will be 6 in December. He just graduated from developmental pre-school and will be going into Kindergaden but will be homebound for this year and also went through homebound devolpmental pre-k . Our main concern was getting all his things done and going to school cannot be done he also has therapist PT,OT and Speech he cannot talk and still doesn't eat by mouth he is tube feed every 2 hours . So we have more than CF to deal with but everyday seems to be more a battle with insurance and school than with taking care of his medical regimen. Hope things' go well for you though sounds like you have your hands full as well ..

Sonya mom of Hunter 5/CF and Kayla 10/no Cf

Huntersmom · May 23, 2008

My son Hunter was born with Bi-lateral cleft lip and palate and we didn't know he had CF until he was about 5 months he was already in the PICU at children's for respiratory failure and had at 3 months had a Fundo and G-Tube placed because he was failure to thrive .Unfortunately his neonatologist at that time keep saying he was okay but at 3months and not even birth wieght I finaly called a gastroenlogist and they got me in fast they said if I hadn't called he would have died soon .Overall he was born okay until he went into cardiac arrest then he sustained brain damage which caused Cerebral Palsy and global developmental delay, along with Cf ,and Microcephaly,and severe crossed was just diagnosed but that was good news because they thought he had optical atrophy which could have caused him to lose his eye eventually so crossyed we will take . Hunter is 5 years old will be 6 in December. He just graduated from developmental pre-school and will be going into Kindergaden but will be homebound for this year and also went through homebound devolpmental pre-k . Our main concern was getting all his things done and going to school cannot be done he also has therapist PT,OT and Speech he cannot talk and still doesn't eat by mouth he is tube feed every 2 hours . So we have more than CF to deal with but everyday seems to be more a battle with insurance and school than with taking care of his medical regimen. Hope things' go well for you though sounds like you have your hands full as well ..
 
 Sonya mom of Hunter 5/CF and Kayla 10/no Cf

Cherylwithone · May 23, 2008

OK. I had to answer to this one. Only because I was to much of a chicken to even ask the question. Glade someone else did<img src="i/expressions/face-icon-small-smile.gif" border="0">

Malora looks like a basket case on paper but I guess we are just use to everything. She is followed by 8 doctors.
Gasroenterology (no to very little motility to her stomach and GI track) Urology (Twin duplex collecting system w/urine reflux, bladder dysmotility, urine frequency) Pulomnary (CF and asthma) Allergist (allergies) Neurology (migrains) Endocrinology (hypothroidism hypogonadism) Cardiology (tachycardia) ENT (sinus/CF) Orthopaedic (scoliosis/kyphosis, low one density) Oh and she has ADHD and OCD. And she also has chronic urticaria (nice way of saying problems with auto immune) Lord knows what went wrong when she was in my stomach. Mind you I don't smoke, drink or do drugs. My son is in perfect health.

Yes, she is a walking drug store. It is who she is and we just keep going. Now, if they find anything wrong she just says "go figure"

Cheryl mom to Malora 15 w/cf

Cherylwithone · May 23, 2008

OK. I had to answer to this one. Only because I was to much of a chicken to even ask the question. Glade someone else did<img src="i/expressions/face-icon-small-smile.gif" border="0">

Malora looks like a basket case on paper but I guess we are just use to everything. She is followed by 8 doctors.
Gasroenterology (no to very little motility to her stomach and GI track) Urology (Twin duplex collecting system w/urine reflux, bladder dysmotility, urine frequency) Pulomnary (CF and asthma) Allergist (allergies) Neurology (migrains) Endocrinology (hypothroidism hypogonadism) Cardiology (tachycardia) ENT (sinus/CF) Orthopaedic (scoliosis/kyphosis, low one density) Oh and she has ADHD and OCD. And she also has chronic urticaria (nice way of saying problems with auto immune) Lord knows what went wrong when she was in my stomach. Mind you I don't smoke, drink or do drugs. My son is in perfect health.

Yes, she is a walking drug store. It is who she is and we just keep going. Now, if they find anything wrong she just says "go figure"

Cheryl mom to Malora 15 w/cf

Cherylwithone · May 23, 2008

OK. I had to answer to this one. Only because I was to much of a chicken to even ask the question. Glade someone else did<img src="i/expressions/face-icon-small-smile.gif" border="0">

Malora looks like a basket case on paper but I guess we are just use to everything. She is followed by 8 doctors.
Gasroenterology (no to very little motility to her stomach and GI track) Urology (Twin duplex collecting system w/urine reflux, bladder dysmotility, urine frequency) Pulomnary (CF and asthma) Allergist (allergies) Neurology (migrains) Endocrinology (hypothroidism hypogonadism) Cardiology (tachycardia) ENT (sinus/CF) Orthopaedic (scoliosis/kyphosis, low one density) Oh and she has ADHD and OCD. And she also has chronic urticaria (nice way of saying problems with auto immune) Lord knows what went wrong when she was in my stomach. Mind you I don't smoke, drink or do drugs. My son is in perfect health.

Yes, she is a walking drug store. It is who she is and we just keep going. Now, if they find anything wrong she just says "go figure"

Cheryl mom to Malora 15 w/cf

Cherylwithone · May 23, 2008

OK. I had to answer to this one. Only because I was to much of a chicken to even ask the question. Glade someone else did<img src="i/expressions/face-icon-small-smile.gif" border="0">

Malora looks like a basket case on paper but I guess we are just use to everything. She is followed by 8 doctors.
Gasroenterology (no to very little motility to her stomach and GI track) Urology (Twin duplex collecting system w/urine reflux, bladder dysmotility, urine frequency) Pulomnary (CF and asthma) Allergist (allergies) Neurology (migrains) Endocrinology (hypothroidism hypogonadism) Cardiology (tachycardia) ENT (sinus/CF) Orthopaedic (scoliosis/kyphosis, low one density) Oh and she has ADHD and OCD. And she also has chronic urticaria (nice way of saying problems with auto immune) Lord knows what went wrong when she was in my stomach. Mind you I don't smoke, drink or do drugs. My son is in perfect health.

Yes, she is a walking drug store. It is who she is and we just keep going. Now, if they find anything wrong she just says "go figure"

Cheryl mom to Malora 15 w/cf

Cherylwithone · May 23, 2008

OK. I had to answer to this one. Only because I was to much of a chicken to even ask the question. Glade someone else did<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
 Malora looks like a basket case on paper but I guess we are just use to everything. She is followed by 8 doctors.
 Gasroenterology (no to very little motility to her stomach and GI track) Urology (Twin duplex collecting system w/urine reflux, bladder dysmotility, urine frequency) Pulomnary (CF and asthma) Allergist (allergies) Neurology (migrains) Endocrinology (hypothroidism hypogonadism) Cardiology (tachycardia) ENT (sinus/CF) Orthopaedic (scoliosis/kyphosis, low one density) Oh and she has ADHD and OCD. And she also has chronic urticaria (nice way of saying problems with auto immune) Lord knows what went wrong when she was in my stomach. Mind you I don't smoke, drink or do drugs. My son is in perfect health.
 
 Yes, she is a walking drug store. It is who she is and we just keep going. Now, if they find anything wrong she just says "go figure"
 
 Cheryl mom to Malora 15 w/cf

More than CF

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