stressed and still unsure (a bit long)

C

CJsmom

New member
Hello all, I introduced myself a bit before <a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=6&threadid=32384&enterthread=y">http://forums.cysticfibrosis.c...id=32384&enterthread=y</a> but I'm really stressed and looking for some advice.
My son possibly has CF, his doc is fairly certain and he is scheduled for a sweat test June 5 and any borderline or higher tests will be followed with a full Ambrey. We also have a consult at the CF center that day, following the test.
Lately he is just so tired all the time. He complains of headaches and a sick stomach and rarely wants to get out of bed for anything. He would be happy to lay in bed all day if I let him and he sleeps about 10 hours at night plus about 4 hours during the day. He also has a runny/stuffy nose that just won't give him a break. He makes this throat clearing sound all the time, almost like a gulp, but deep in his throat. he has a great appetite but never seems to put on weight. At last check he was 95lbs, same as he has been the past almost 2 years. He is 13 and 5'4". I should also add that he is home tutored (actually done at a neighbors house cause I'm at work)and has missed almost every day with the tutor the past 2 weeks because he hasn't felt well enough. Has anyone had any experience with a child with all of this? I fear he is getting depressed but his psychologist reassures me that when they talk, CJ seems to be content with everything and is comfortable with the way things are. I'm at my wits end trying to help him and his doctors are fantastic but I just feel so helpless, like there is nothing I can do for him. I know he is scared and I try to comfort him the best I can but I'm just so lost as to what I can do to help him.
The stress of it all is affecting everyone in the house, myself and his siblings. They feel like they need to tiptoe around to not disturb him and I know they aren't getting the attention they deserve because I am so focused on trying to make him well.
Any advice would be greatly appreciated.
 
C

CJsmom

New member
Hello all, I introduced myself a bit before <a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=6&threadid=32384&enterthread=y">http://forums.cysticfibrosis.c...id=32384&enterthread=y</a> but I'm really stressed and looking for some advice.
My son possibly has CF, his doc is fairly certain and he is scheduled for a sweat test June 5 and any borderline or higher tests will be followed with a full Ambrey. We also have a consult at the CF center that day, following the test.
Lately he is just so tired all the time. He complains of headaches and a sick stomach and rarely wants to get out of bed for anything. He would be happy to lay in bed all day if I let him and he sleeps about 10 hours at night plus about 4 hours during the day. He also has a runny/stuffy nose that just won't give him a break. He makes this throat clearing sound all the time, almost like a gulp, but deep in his throat. he has a great appetite but never seems to put on weight. At last check he was 95lbs, same as he has been the past almost 2 years. He is 13 and 5'4". I should also add that he is home tutored (actually done at a neighbors house cause I'm at work)and has missed almost every day with the tutor the past 2 weeks because he hasn't felt well enough. Has anyone had any experience with a child with all of this? I fear he is getting depressed but his psychologist reassures me that when they talk, CJ seems to be content with everything and is comfortable with the way things are. I'm at my wits end trying to help him and his doctors are fantastic but I just feel so helpless, like there is nothing I can do for him. I know he is scared and I try to comfort him the best I can but I'm just so lost as to what I can do to help him.
The stress of it all is affecting everyone in the house, myself and his siblings. They feel like they need to tiptoe around to not disturb him and I know they aren't getting the attention they deserve because I am so focused on trying to make him well.
Any advice would be greatly appreciated.
 
C

CJsmom

New member
Hello all, I introduced myself a bit before <a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=6&threadid=32384&enterthread=y">http://forums.cysticfibrosis.c...id=32384&enterthread=y</a> but I'm really stressed and looking for some advice.
My son possibly has CF, his doc is fairly certain and he is scheduled for a sweat test June 5 and any borderline or higher tests will be followed with a full Ambrey. We also have a consult at the CF center that day, following the test.
Lately he is just so tired all the time. He complains of headaches and a sick stomach and rarely wants to get out of bed for anything. He would be happy to lay in bed all day if I let him and he sleeps about 10 hours at night plus about 4 hours during the day. He also has a runny/stuffy nose that just won't give him a break. He makes this throat clearing sound all the time, almost like a gulp, but deep in his throat. he has a great appetite but never seems to put on weight. At last check he was 95lbs, same as he has been the past almost 2 years. He is 13 and 5'4". I should also add that he is home tutored (actually done at a neighbors house cause I'm at work)and has missed almost every day with the tutor the past 2 weeks because he hasn't felt well enough. Has anyone had any experience with a child with all of this? I fear he is getting depressed but his psychologist reassures me that when they talk, CJ seems to be content with everything and is comfortable with the way things are. I'm at my wits end trying to help him and his doctors are fantastic but I just feel so helpless, like there is nothing I can do for him. I know he is scared and I try to comfort him the best I can but I'm just so lost as to what I can do to help him.
The stress of it all is affecting everyone in the house, myself and his siblings. They feel like they need to tiptoe around to not disturb him and I know they aren't getting the attention they deserve because I am so focused on trying to make him well.
Any advice would be greatly appreciated.
 
C

CJsmom

New member
Hello all, I introduced myself a bit before <a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=6&threadid=32384&enterthread=y">http://forums.cysticfibrosis.c...id=32384&enterthread=y</a> but I'm really stressed and looking for some advice.
My son possibly has CF, his doc is fairly certain and he is scheduled for a sweat test June 5 and any borderline or higher tests will be followed with a full Ambrey. We also have a consult at the CF center that day, following the test.
Lately he is just so tired all the time. He complains of headaches and a sick stomach and rarely wants to get out of bed for anything. He would be happy to lay in bed all day if I let him and he sleeps about 10 hours at night plus about 4 hours during the day. He also has a runny/stuffy nose that just won't give him a break. He makes this throat clearing sound all the time, almost like a gulp, but deep in his throat. he has a great appetite but never seems to put on weight. At last check he was 95lbs, same as he has been the past almost 2 years. He is 13 and 5'4". I should also add that he is home tutored (actually done at a neighbors house cause I'm at work)and has missed almost every day with the tutor the past 2 weeks because he hasn't felt well enough. Has anyone had any experience with a child with all of this? I fear he is getting depressed but his psychologist reassures me that when they talk, CJ seems to be content with everything and is comfortable with the way things are. I'm at my wits end trying to help him and his doctors are fantastic but I just feel so helpless, like there is nothing I can do for him. I know he is scared and I try to comfort him the best I can but I'm just so lost as to what I can do to help him.
The stress of it all is affecting everyone in the house, myself and his siblings. They feel like they need to tiptoe around to not disturb him and I know they aren't getting the attention they deserve because I am so focused on trying to make him well.
Any advice would be greatly appreciated.
 
C

CJsmom

New member
Hello all, I introduced myself a bit before <a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=6&threadid=32384&enterthread=y">http://forums.cysticfibrosis.c...id=32384&enterthread=y</a> but I'm really stressed and looking for some advice.
<br />My son possibly has CF, his doc is fairly certain and he is scheduled for a sweat test June 5 and any borderline or higher tests will be followed with a full Ambrey. We also have a consult at the CF center that day, following the test.
<br />Lately he is just so tired all the time. He complains of headaches and a sick stomach and rarely wants to get out of bed for anything. He would be happy to lay in bed all day if I let him and he sleeps about 10 hours at night plus about 4 hours during the day. He also has a runny/stuffy nose that just won't give him a break. He makes this throat clearing sound all the time, almost like a gulp, but deep in his throat. he has a great appetite but never seems to put on weight. At last check he was 95lbs, same as he has been the past almost 2 years. He is 13 and 5'4". I should also add that he is home tutored (actually done at a neighbors house cause I'm at work)and has missed almost every day with the tutor the past 2 weeks because he hasn't felt well enough. Has anyone had any experience with a child with all of this? I fear he is getting depressed but his psychologist reassures me that when they talk, CJ seems to be content with everything and is comfortable with the way things are. I'm at my wits end trying to help him and his doctors are fantastic but I just feel so helpless, like there is nothing I can do for him. I know he is scared and I try to comfort him the best I can but I'm just so lost as to what I can do to help him.
<br />The stress of it all is affecting everyone in the house, myself and his siblings. They feel like they need to tiptoe around to not disturb him and I know they aren't getting the attention they deserve because I am so focused on trying to make him well.
<br />Any advice would be greatly appreciated.
 
J

JORDYSMOM

New member
The waiting is so hard! I know you have the sweat test scheduled for next week, with a CF consult to follow. I'm thinking that no matter what the test results, your son could benefit from digestive enzymes. His low energy could very well be caused from vitamin deficiency.

As I stated in your first post, my son is not considered PI, but he does not easily gain weight, and he does need supplements to keep his vitamin levels up. He and I both are "borderline anemic", and I'm hypoglycemic. It has a huge impact on energy level. The CF clinic will most likely draw blood to check your son's vit. levels, and act accordingly..

Jordan would sleep all day too if we let him. I know it's hard, but encourage your son to get up and exercise some. Our bodies react to exercise in positive ways. It causes us to produce the chemicals we need for our organs to function properly. Even a short walk each day will be beneficial. If I may be a little bold here, please don't tiptoe around your son. Treat him as you would your other kids, with the exception that he gets the extra meds/treatments he may need. He will appreciate it, trust me. Even if he doesn't have CF, he has some medical issue, and that alone will make him feel different. Try to make the rest of his life as "normal" as possible.

I know it's hard to spread yourself around to all of the kids. There are times when Jordan required more of my attention, but I try to make up for it with special outings with my younger son. All kids need some one on one time with their parents. It will get easier, I promise.

Take care, and keep us posted.

Stacey
 
J

JORDYSMOM

New member
The waiting is so hard! I know you have the sweat test scheduled for next week, with a CF consult to follow. I'm thinking that no matter what the test results, your son could benefit from digestive enzymes. His low energy could very well be caused from vitamin deficiency.

As I stated in your first post, my son is not considered PI, but he does not easily gain weight, and he does need supplements to keep his vitamin levels up. He and I both are "borderline anemic", and I'm hypoglycemic. It has a huge impact on energy level. The CF clinic will most likely draw blood to check your son's vit. levels, and act accordingly..

Jordan would sleep all day too if we let him. I know it's hard, but encourage your son to get up and exercise some. Our bodies react to exercise in positive ways. It causes us to produce the chemicals we need for our organs to function properly. Even a short walk each day will be beneficial. If I may be a little bold here, please don't tiptoe around your son. Treat him as you would your other kids, with the exception that he gets the extra meds/treatments he may need. He will appreciate it, trust me. Even if he doesn't have CF, he has some medical issue, and that alone will make him feel different. Try to make the rest of his life as "normal" as possible.

I know it's hard to spread yourself around to all of the kids. There are times when Jordan required more of my attention, but I try to make up for it with special outings with my younger son. All kids need some one on one time with their parents. It will get easier, I promise.

Take care, and keep us posted.

Stacey
 
J

JORDYSMOM

New member
The waiting is so hard! I know you have the sweat test scheduled for next week, with a CF consult to follow. I'm thinking that no matter what the test results, your son could benefit from digestive enzymes. His low energy could very well be caused from vitamin deficiency.

As I stated in your first post, my son is not considered PI, but he does not easily gain weight, and he does need supplements to keep his vitamin levels up. He and I both are "borderline anemic", and I'm hypoglycemic. It has a huge impact on energy level. The CF clinic will most likely draw blood to check your son's vit. levels, and act accordingly..

Jordan would sleep all day too if we let him. I know it's hard, but encourage your son to get up and exercise some. Our bodies react to exercise in positive ways. It causes us to produce the chemicals we need for our organs to function properly. Even a short walk each day will be beneficial. If I may be a little bold here, please don't tiptoe around your son. Treat him as you would your other kids, with the exception that he gets the extra meds/treatments he may need. He will appreciate it, trust me. Even if he doesn't have CF, he has some medical issue, and that alone will make him feel different. Try to make the rest of his life as "normal" as possible.

I know it's hard to spread yourself around to all of the kids. There are times when Jordan required more of my attention, but I try to make up for it with special outings with my younger son. All kids need some one on one time with their parents. It will get easier, I promise.

Take care, and keep us posted.

Stacey
 
J

JORDYSMOM

New member
The waiting is so hard! I know you have the sweat test scheduled for next week, with a CF consult to follow. I'm thinking that no matter what the test results, your son could benefit from digestive enzymes. His low energy could very well be caused from vitamin deficiency.

As I stated in your first post, my son is not considered PI, but he does not easily gain weight, and he does need supplements to keep his vitamin levels up. He and I both are "borderline anemic", and I'm hypoglycemic. It has a huge impact on energy level. The CF clinic will most likely draw blood to check your son's vit. levels, and act accordingly..

Jordan would sleep all day too if we let him. I know it's hard, but encourage your son to get up and exercise some. Our bodies react to exercise in positive ways. It causes us to produce the chemicals we need for our organs to function properly. Even a short walk each day will be beneficial. If I may be a little bold here, please don't tiptoe around your son. Treat him as you would your other kids, with the exception that he gets the extra meds/treatments he may need. He will appreciate it, trust me. Even if he doesn't have CF, he has some medical issue, and that alone will make him feel different. Try to make the rest of his life as "normal" as possible.

I know it's hard to spread yourself around to all of the kids. There are times when Jordan required more of my attention, but I try to make up for it with special outings with my younger son. All kids need some one on one time with their parents. It will get easier, I promise.

Take care, and keep us posted.

Stacey
 
J

JORDYSMOM

New member
The waiting is so hard! I know you have the sweat test scheduled for next week, with a CF consult to follow. I'm thinking that no matter what the test results, your son could benefit from digestive enzymes. His low energy could very well be caused from vitamin deficiency.
<br />
<br />As I stated in your first post, my son is not considered PI, but he does not easily gain weight, and he does need supplements to keep his vitamin levels up. He and I both are "borderline anemic", and I'm hypoglycemic. It has a huge impact on energy level. The CF clinic will most likely draw blood to check your son's vit. levels, and act accordingly..
<br />
<br />Jordan would sleep all day too if we let him. I know it's hard, but encourage your son to get up and exercise some. Our bodies react to exercise in positive ways. It causes us to produce the chemicals we need for our organs to function properly. Even a short walk each day will be beneficial. If I may be a little bold here, please don't tiptoe around your son. Treat him as you would your other kids, with the exception that he gets the extra meds/treatments he may need. He will appreciate it, trust me. Even if he doesn't have CF, he has some medical issue, and that alone will make him feel different. Try to make the rest of his life as "normal" as possible.
<br />
<br />I know it's hard to spread yourself around to all of the kids. There are times when Jordan required more of my attention, but I try to make up for it with special outings with my younger son. All kids need some one on one time with their parents. It will get easier, I promise.
<br />
<br />Take care, and keep us posted.
<br />
<br />Stacey
<br />
 
C

chipie12

New member
My son is 13 also. He as diagnosised at birth, but he is a small guy. he is about 98 pounds and 4'11' I would think maybe a thyroid problem or Lymes disease before CF. I know we knew about my son's CF since birth, but I do not think I have ever seen him that tired. I will keep all of you in my prayers. I know it must be difficult for everyone. If you need to talk, this is the best place to be.
 
C

chipie12

New member
My son is 13 also. He as diagnosised at birth, but he is a small guy. he is about 98 pounds and 4'11' I would think maybe a thyroid problem or Lymes disease before CF. I know we knew about my son's CF since birth, but I do not think I have ever seen him that tired. I will keep all of you in my prayers. I know it must be difficult for everyone. If you need to talk, this is the best place to be.
 
C

chipie12

New member
My son is 13 also. He as diagnosised at birth, but he is a small guy. he is about 98 pounds and 4'11' I would think maybe a thyroid problem or Lymes disease before CF. I know we knew about my son's CF since birth, but I do not think I have ever seen him that tired. I will keep all of you in my prayers. I know it must be difficult for everyone. If you need to talk, this is the best place to be.
 
C

chipie12

New member
My son is 13 also. He as diagnosised at birth, but he is a small guy. he is about 98 pounds and 4'11' I would think maybe a thyroid problem or Lymes disease before CF. I know we knew about my son's CF since birth, but I do not think I have ever seen him that tired. I will keep all of you in my prayers. I know it must be difficult for everyone. If you need to talk, this is the best place to be.
 
C

chipie12

New member
My son is 13 also. He as diagnosised at birth, but he is a small guy. he is about 98 pounds and 4'11' I would think maybe a thyroid problem or Lymes disease before CF. I know we knew about my son's CF since birth, but I do not think I have ever seen him that tired. I will keep all of you in my prayers. I know it must be difficult for everyone. If you need to talk, this is the best place to be.
 
C

CJsmom

New member
Thanks <img src="">
Chipie, he has been tested for his thyroid and Lyme disease. We do have family history of CF and with his asthma and other gi issues, his docs are almost positive its CF.
Stacey, thanks for the encouraging words.I try to treat CJ, as much as possible, like normal. His younger brother and sister (ages 12 and 8) are overly courteous to him, always letting him have everything first, and always asking him if he is ok. I also try to get some one on one time with all of the kids at least once a week, even if its just a trip to the store or for a quick ice cream cone.
I took him to the doc today (his general ped) and he did a full cbc chem and bmp blood works-ups just to double check everything. He wanted to specifically look for anemia, as you had mentioned, and his enzyme levels. He also sent him for an xray to look further into why CJ is having knee problems. The xrays showed a curve in his spine (scoliosis) so we are waiting for the full reading to come back.
All in all its just this crazy rollercoaster that just won't stop to let us get the heck off it. Thanks for the support, it helps ya get thru the day sometimes, ya know?!
 
C

CJsmom

New member
Thanks <img src="">
Chipie, he has been tested for his thyroid and Lyme disease. We do have family history of CF and with his asthma and other gi issues, his docs are almost positive its CF.
Stacey, thanks for the encouraging words.I try to treat CJ, as much as possible, like normal. His younger brother and sister (ages 12 and 8) are overly courteous to him, always letting him have everything first, and always asking him if he is ok. I also try to get some one on one time with all of the kids at least once a week, even if its just a trip to the store or for a quick ice cream cone.
I took him to the doc today (his general ped) and he did a full cbc chem and bmp blood works-ups just to double check everything. He wanted to specifically look for anemia, as you had mentioned, and his enzyme levels. He also sent him for an xray to look further into why CJ is having knee problems. The xrays showed a curve in his spine (scoliosis) so we are waiting for the full reading to come back.
All in all its just this crazy rollercoaster that just won't stop to let us get the heck off it. Thanks for the support, it helps ya get thru the day sometimes, ya know?!
 
C

CJsmom

New member
Thanks <img src="">
Chipie, he has been tested for his thyroid and Lyme disease. We do have family history of CF and with his asthma and other gi issues, his docs are almost positive its CF.
Stacey, thanks for the encouraging words.I try to treat CJ, as much as possible, like normal. His younger brother and sister (ages 12 and 8) are overly courteous to him, always letting him have everything first, and always asking him if he is ok. I also try to get some one on one time with all of the kids at least once a week, even if its just a trip to the store or for a quick ice cream cone.
I took him to the doc today (his general ped) and he did a full cbc chem and bmp blood works-ups just to double check everything. He wanted to specifically look for anemia, as you had mentioned, and his enzyme levels. He also sent him for an xray to look further into why CJ is having knee problems. The xrays showed a curve in his spine (scoliosis) so we are waiting for the full reading to come back.
All in all its just this crazy rollercoaster that just won't stop to let us get the heck off it. Thanks for the support, it helps ya get thru the day sometimes, ya know?!
 
C

CJsmom

New member
Thanks <img src="">
Chipie, he has been tested for his thyroid and Lyme disease. We do have family history of CF and with his asthma and other gi issues, his docs are almost positive its CF.
Stacey, thanks for the encouraging words.I try to treat CJ, as much as possible, like normal. His younger brother and sister (ages 12 and 8) are overly courteous to him, always letting him have everything first, and always asking him if he is ok. I also try to get some one on one time with all of the kids at least once a week, even if its just a trip to the store or for a quick ice cream cone.
I took him to the doc today (his general ped) and he did a full cbc chem and bmp blood works-ups just to double check everything. He wanted to specifically look for anemia, as you had mentioned, and his enzyme levels. He also sent him for an xray to look further into why CJ is having knee problems. The xrays showed a curve in his spine (scoliosis) so we are waiting for the full reading to come back.
All in all its just this crazy rollercoaster that just won't stop to let us get the heck off it. Thanks for the support, it helps ya get thru the day sometimes, ya know?!
 
C

CJsmom

New member
Thanks <img src="">
<br />Chipie, he has been tested for his thyroid and Lyme disease. We do have family history of CF and with his asthma and other gi issues, his docs are almost positive its CF.
<br />Stacey, thanks for the encouraging words.I try to treat CJ, as much as possible, like normal. His younger brother and sister (ages 12 and 8) are overly courteous to him, always letting him have everything first, and always asking him if he is ok. I also try to get some one on one time with all of the kids at least once a week, even if its just a trip to the store or for a quick ice cream cone.
<br />I took him to the doc today (his general ped) and he did a full cbc chem and bmp blood works-ups just to double check everything. He wanted to specifically look for anemia, as you had mentioned, and his enzyme levels. He also sent him for an xray to look further into why CJ is having knee problems. The xrays showed a curve in his spine (scoliosis) so we are waiting for the full reading to come back.
<br />All in all its just this crazy rollercoaster that just won't stop to let us get the heck off it. Thanks for the support, it helps ya get thru the day sometimes, ya know?!
 
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