Hi everyone. I am hoping to gain some companionship and some information about my daughter, Samantha, age 13, diagnosed last year with CF. I am new to the site and posted a reply to someone and received a suggestion to start a new topic so here goes. My daughter had a positive sweat test, but genetics only found one rare mutation (G576A). I feel pretty sure that she does have CF, but she has symptoms that don't fit. She is pancreatic sufficient, but does not gain weight even with enzymes. (we are trying a new enzyme to see if that helps) She does not have salty skin. Her lung functiions are great, sinuse clear, but she had several URI's and pneumo. etc. when she was younger. She has weird things like strong nails, but brittle, won't grow hair. She is also on a growth hormone with little to no results. She is followed by a CF clinic, an endocronologist, and mental health specialists where she has been diagnosed ADHD and pediatric bipolar. As a mother you sometimes have a gut feeling about your child, and from the minute she was born I new she was different. I have been searching for the past 10 years to find answers to the mystery of Samantha. All I have is one diagnoses after another, but no real anwers. Does anyone know of CF patients with mental health issues or if there is a link between the two? I feel like I am living one of those myster diagnosis shows with no end yet. Any input would be great. Best wishes to all who read and remember, if your day is hemed in with prayer it is less likely to unravel.
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CF or something else???
- Thread starter Samsmom
- Start date
Hi everyone. I am hoping to gain some companionship and some information about my daughter, Samantha, age 13, diagnosed last year with CF. I am new to the site and posted a reply to someone and received a suggestion to start a new topic so here goes. My daughter had a positive sweat test, but genetics only found one rare mutation (G576A). I feel pretty sure that she does have CF, but she has symptoms that don't fit. She is pancreatic sufficient, but does not gain weight even with enzymes. (we are trying a new enzyme to see if that helps) She does not have salty skin. Her lung functiions are great, sinuse clear, but she had several URI's and pneumo. etc. when she was younger. She has weird things like strong nails, but brittle, won't grow hair. She is also on a growth hormone with little to no results. She is followed by a CF clinic, an endocronologist, and mental health specialists where she has been diagnosed ADHD and pediatric bipolar. As a mother you sometimes have a gut feeling about your child, and from the minute she was born I new she was different. I have been searching for the past 10 years to find answers to the mystery of Samantha. All I have is one diagnoses after another, but no real anwers. Does anyone know of CF patients with mental health issues or if there is a link between the two? I feel like I am living one of those myster diagnosis shows with no end yet. Any input would be great. Best wishes to all who read and remember, if your day is hemed in with prayer it is less likely to unravel.
Hi everyone. I am hoping to gain some companionship and some information about my daughter, Samantha, age 13, diagnosed last year with CF. I am new to the site and posted a reply to someone and received a suggestion to start a new topic so here goes. My daughter had a positive sweat test, but genetics only found one rare mutation (G576A). I feel pretty sure that she does have CF, but she has symptoms that don't fit. She is pancreatic sufficient, but does not gain weight even with enzymes. (we are trying a new enzyme to see if that helps) She does not have salty skin. Her lung functiions are great, sinuse clear, but she had several URI's and pneumo. etc. when she was younger. She has weird things like strong nails, but brittle, won't grow hair. She is also on a growth hormone with little to no results. She is followed by a CF clinic, an endocronologist, and mental health specialists where she has been diagnosed ADHD and pediatric bipolar. As a mother you sometimes have a gut feeling about your child, and from the minute she was born I new she was different. I have been searching for the past 10 years to find answers to the mystery of Samantha. All I have is one diagnoses after another, but no real anwers. Does anyone know of CF patients with mental health issues or if there is a link between the two? I feel like I am living one of those myster diagnosis shows with no end yet. Any input would be great. Best wishes to all who read and remember, if your day is hemed in with prayer it is less likely to unravel.
There have been many CFers with Mental Health issues, but what I dont know is if they are a direct cause of CF, vice versa or just a bad deal in life. In comparison to the # of CFers I would think its a bad deal in life. Depression can come with any chronic illness, but more than that I guess varies. As far as the gene mutation....being that the one that has been identified is rare there is a good chance that the other one is rare and hasnt been idenitified yet. Most of her symptoms sound like CF, but like everything in life. There is extras. I have epilepsy. My seizures didnt start until after my CF dx and treatment for it. A conincidence? Maybe! I wish there were black & white answers for you. I am glad you took the step to post your on thread.!!!
There have been many CFers with Mental Health issues, but what I dont know is if they are a direct cause of CF, vice versa or just a bad deal in life. In comparison to the # of CFers I would think its a bad deal in life. Depression can come with any chronic illness, but more than that I guess varies. As far as the gene mutation....being that the one that has been identified is rare there is a good chance that the other one is rare and hasnt been idenitified yet. Most of her symptoms sound like CF, but like everything in life. There is extras. I have epilepsy. My seizures didnt start until after my CF dx and treatment for it. A conincidence? Maybe! I wish there were black & white answers for you. I am glad you took the step to post your on thread.!!!
There have been many CFers with Mental Health issues, but what I dont know is if they are a direct cause of CF, vice versa or just a bad deal in life. In comparison to the # of CFers I would think its a bad deal in life. Depression can come with any chronic illness, but more than that I guess varies. As far as the gene mutation....being that the one that has been identified is rare there is a good chance that the other one is rare and hasnt been idenitified yet. Most of her symptoms sound like CF, but like everything in life. There is extras. I have epilepsy. My seizures didnt start until after my CF dx and treatment for it. A conincidence? Maybe! I wish there were black & white answers for you. I am glad you took the step to post your on thread.!!!
Childressj
New member
Since you were so nice to reply to my thread I guess I can let you know that although we are still not sure of my son's diagnosis, (He is 13) he is being treated for ADHD, OCD, and depression and rather successfully too. He is on Focalin and that has helped tremendously at school as for the OCD and Depression, that has good days and bad but what I have learned is that good therapy and great parenting helps with those. Good Luck!
Childressj
New member
Since you were so nice to reply to my thread I guess I can let you know that although we are still not sure of my son's diagnosis, (He is 13) he is being treated for ADHD, OCD, and depression and rather successfully too. He is on Focalin and that has helped tremendously at school as for the OCD and Depression, that has good days and bad but what I have learned is that good therapy and great parenting helps with those. Good Luck!
Childressj
New member
Since you were so nice to reply to my thread I guess I can let you know that although we are still not sure of my son's diagnosis, (He is 13) he is being treated for ADHD, OCD, and depression and rather successfully too. He is on Focalin and that has helped tremendously at school as for the OCD and Depression, that has good days and bad but what I have learned is that good therapy and great parenting helps with those. Good Luck!
How many mutations was she tested for last year? not all genetic tests are created equal. and they are finding more and more genes every year.
I would get her re-tested with the Ambry Full panel test that tests for 1500 genes. And keep doing it year after year until her other mutation is identified.
I would get her re-tested with the Ambry Full panel test that tests for 1500 genes. And keep doing it year after year until her other mutation is identified.
How many mutations was she tested for last year? not all genetic tests are created equal. and they are finding more and more genes every year.
I would get her re-tested with the Ambry Full panel test that tests for 1500 genes. And keep doing it year after year until her other mutation is identified.
I would get her re-tested with the Ambry Full panel test that tests for 1500 genes. And keep doing it year after year until her other mutation is identified.
How many mutations was she tested for last year? not all genetic tests are created equal. and they are finding more and more genes every year.
I would get her re-tested with the Ambry Full panel test that tests for 1500 genes. And keep doing it year after year until her other mutation is identified.
I would get her re-tested with the Ambry Full panel test that tests for 1500 genes. And keep doing it year after year until her other mutation is identified.
I can't stress enough the value of good therapy for mental health. We went through about 6 or 7 psychiatrists and councelors before we found the ones we have now and what a difference it made. I hope you don't have to wait too long to get a diagnosis for your son. I know the waiting can be hard. My daughter is being treated with concerta, depakote, and seroquel for mental health issues, growth hormone for growth, and several CF related drugs that vary from month to month. It seems like parenting a child with special needs like mine and yours is such a demanding job, but I feel blessed to have the children I have and wouldn't trade them for the world. Hope only good news comes your way today!!!
I can't stress enough the value of good therapy for mental health. We went through about 6 or 7 psychiatrists and councelors before we found the ones we have now and what a difference it made. I hope you don't have to wait too long to get a diagnosis for your son. I know the waiting can be hard. My daughter is being treated with concerta, depakote, and seroquel for mental health issues, growth hormone for growth, and several CF related drugs that vary from month to month. It seems like parenting a child with special needs like mine and yours is such a demanding job, but I feel blessed to have the children I have and wouldn't trade them for the world. Hope only good news comes your way today!!!
I can't stress enough the value of good therapy for mental health. We went through about 6 or 7 psychiatrists and councelors before we found the ones we have now and what a difference it made. I hope you don't have to wait too long to get a diagnosis for your son. I know the waiting can be hard. My daughter is being treated with concerta, depakote, and seroquel for mental health issues, growth hormone for growth, and several CF related drugs that vary from month to month. It seems like parenting a child with special needs like mine and yours is such a demanding job, but I feel blessed to have the children I have and wouldn't trade them for the world. Hope only good news comes your way today!!!
Childressj
New member
I have to tell you, it is great to speak to another parent about Mental health in my teenager. Everyone in the family keeps telling me that "it's just being a teen" and I cannot believe that at all. I too went through two psychiatrist before making a decision on one. We started therpay and meds for his diagnosis about 6 months ago and the improvement is tremendous so I feel good that I caught that early instead of waiting out "just being a teen" The OCD is really a huge stressor in our lives and therapy helps but there is only so much that you can do about it except be understanding and help him to recognize it.
I am taking him and a bunch of teens on a church trip tonight so that should keep our minds full. I have not really told him much about all this, he is so used to being poked and prodded that he just excepts it.
after reading all of the threads I am now concerned that I did not do the full genectic screening, so I hope that after the results come back that they will continue to follow-through with that.
Wow those psych meds are pretty strong ones, do they help out? I resisted Medications for Trevor because the side efffects worried me but I like Focalin very much. He is on chrinc sinus meds and AStham meds and Pain meds for Cramping too. He has also started getting migraines so he is constantly taking motrin-the peds doc is concerned about that. well enough for now. Thanks again.
I am taking him and a bunch of teens on a church trip tonight so that should keep our minds full. I have not really told him much about all this, he is so used to being poked and prodded that he just excepts it.
after reading all of the threads I am now concerned that I did not do the full genectic screening, so I hope that after the results come back that they will continue to follow-through with that.
Wow those psych meds are pretty strong ones, do they help out? I resisted Medications for Trevor because the side efffects worried me but I like Focalin very much. He is on chrinc sinus meds and AStham meds and Pain meds for Cramping too. He has also started getting migraines so he is constantly taking motrin-the peds doc is concerned about that. well enough for now. Thanks again.
Childressj
New member
I have to tell you, it is great to speak to another parent about Mental health in my teenager. Everyone in the family keeps telling me that "it's just being a teen" and I cannot believe that at all. I too went through two psychiatrist before making a decision on one. We started therpay and meds for his diagnosis about 6 months ago and the improvement is tremendous so I feel good that I caught that early instead of waiting out "just being a teen" The OCD is really a huge stressor in our lives and therapy helps but there is only so much that you can do about it except be understanding and help him to recognize it.
I am taking him and a bunch of teens on a church trip tonight so that should keep our minds full. I have not really told him much about all this, he is so used to being poked and prodded that he just excepts it.
after reading all of the threads I am now concerned that I did not do the full genectic screening, so I hope that after the results come back that they will continue to follow-through with that.
Wow those psych meds are pretty strong ones, do they help out? I resisted Medications for Trevor because the side efffects worried me but I like Focalin very much. He is on chrinc sinus meds and AStham meds and Pain meds for Cramping too. He has also started getting migraines so he is constantly taking motrin-the peds doc is concerned about that. well enough for now. Thanks again.
I am taking him and a bunch of teens on a church trip tonight so that should keep our minds full. I have not really told him much about all this, he is so used to being poked and prodded that he just excepts it.
after reading all of the threads I am now concerned that I did not do the full genectic screening, so I hope that after the results come back that they will continue to follow-through with that.
Wow those psych meds are pretty strong ones, do they help out? I resisted Medications for Trevor because the side efffects worried me but I like Focalin very much. He is on chrinc sinus meds and AStham meds and Pain meds for Cramping too. He has also started getting migraines so he is constantly taking motrin-the peds doc is concerned about that. well enough for now. Thanks again.