Hi! It has been forever since I got so much support from this forum for my son. So much has happened since then I have a sense of positive obligation to bring awareness to an issue that happened with us.
Let me first start off by saying that my son is doing well. He is off his tube. He lost weight initially but has evened out. He still takes creon after a severe bout of constipation with intermittant diarrhea on a short trial without. He has had a few lung infections that responded well to abx. His FEV1 has dropped to 78% recently but we are working with meds to help that. At his pulmo appt this week we were also made aware that his adenoids may be growing back, had never heard that before! Without his amazing doctors, his pediatrician, his pulmonologist and his GI, he would not be doing so well. They are responsive, caring and intelligent which is all we can ask for in our doctors.
When I was last here, May of 2011, I was frantic. My son was suffering and no one seemed to know what to do for him. It was my full-time job to research, ask questions and seek the best doctor in hopes that he or she could answer the mystery question of what was going on with Owen. I was supported here despite my son not being diagnosed with CF. I laugh to remember my signature which stated all of his symptoms and NOT CF! I was never sure what to think but this felt like the right place to be with all he had/has going on.
On the advice (much appreciated) of people from here, we went to a CF center. We had been all over the country prior, in desperate search of elusive answers. When we waivered with who to continue care with, we would just keep seeking help. We saw one doctor during this time who had a different set of ideas about my son, my husband and myself. After ONE visit with this doctor and a couple of follow-up phone calls, this doctor decided I was mentally ill and had Munchausen by proxy. I shake as I write this. Anyway, even after this doctor had diagnosed a staph infection from a sputum culture and prescribed CPT, the claim was that I relayed information about my son to elicit attention. Because of where I live, my two children were taken from me and my husband and placed into foster care. On that fateful night, I thought I would die. I won't even describe this horror much more because I trust you can all imagine.
In our county, any case like this currently requires immediate removal of all children. Only because God is there and does have power, the system worked as it should and my kids were returned but it took over three weeks. NONE of our other doctors endorsed the accusation. Each of them supported us through it all and worked with Child Protection to prove that I am a good mom who tried to get my child help. Again, I could go on and on about what was said, how wrong it was, and what should be changed in our system but I will restrain because, frankly, it is too much. There is too much wrong with a system that gives one person so much power. There is too much wrong with a system that invokes trauma and apologizes later when the mistake is uncovered. I would only like to say one thing about the court process. When the case was dismissed, the judge did apologized in such a sincere way, I actually accepted it, coming from him.
We will never, ever be the same again, not ever. It was a tradgedy for my family that should never have happened. My children are doing so amazingly well now. They have a resilience that even carried me through as well! We are such a team, in my family, and we know by experience that nothing can knock us down. Nothing. The strength of our love, our family and our friends and truth prevailing are the only reasons we survived this. It was a fight for all of our lives. Ironically, we became very good friends with the foster parents who claim they knew when my kids walked through the door that this was a mistake. I even watch their children since I am one of the few weirdo moms who wants a housefull of excited, happy 5-10 year olds!
I wanted to share this and some lessons learned here because, all along, in my mind, I have replayed similar posts of desperation from other parents here. I am fully aware that we are and were no different than many other parents with a lack of diagnosis for their child. I wanted to let people here know that while this is a crazy rare event, it does happen. When you are in this situation, there are people who will not understand.
We had stopped looking for a diagnosis long before "it" happened. We wanted doctors to treat our son when he was sick. We wanted them to be open to preventative measures since he is prone to lung infections,etc. We were more terrified of waking up one day only to learn he had gotten worse because of something we should have been doing for him but didn't because no one knew to do it. What happens when there is no diagnosis is that doctors don't know what to do and often then nothing is done. Our "real" pulmonologist is an amazing man. He cares for all of his patients. Something I did learn is that doctors need a history with a patient, especially a child. They need to see them through the good (to get baselines) and the bads (to know when to treat symptoms aggressively). This is my BIGGEST regret in our journey. We now know that doctors need the chance to get to know our son and then his issues become glaring on their own, no need to describe them, the doctors see them. That is also why I say shame on the doctor who reported us. It is a doctor's responsibility to know this even when a parent doesn't. That we were reported after one visit with this doctor has just recently become laughable. Maybe you wonder what I think of this doctor. I will not lie, I have said very hateful things and have had my own well-being challenged when filled with that hate. But, time has taught me that even this doctor needs some sympathy. You cannot willingly tear a beautiful family (if I do say so myself) apart without something being terribly wrong in your own life, head, heart.I hope someday this person finds peace in order to carry out the compassionate responsibilites of the job of being a doctor.
Posting here now is kind of the last part of my healing journey (well, not really since some wounds never heal) but I stayed awake worrying others could find themselves in this position too. I am not saying anyone should change what they do. Parents shouuld be allowed to be frantic when their child is not well. But the world is a crazy place sometimes and if you only tuck this story in the back of your mind, I will feel I have made a difference and maybe even helped someone. For the last year plus, we have had what we wanted all along, doctors to help our son. Wanting this is not a crime. But having good doctors is priceless and I thank the stars above we are in this position we are in now. Now, the focus is returned to my son, who never should have been lost in the picture.
I won't probably post on this forum in the future because we have what we need to care for our son. We can let his doctors tell us what needs to be done. I think about the amazing people here and I will always have hope for everyone to get the help they need to love life, feel healthy, and have emotional support. You are an amazing group of people and you have taught me soooooo much. I owe so much of my knowledge to you. I am only grateful now to be allowed to just be mommy and have doctors to rely on so my son is living the best life he can.
Thank you for reading this and honoring my need to bring it up. I will never disclose the name of this doctor for many reasons but if I can help in any other ways, let me know. I want to be a survivor who makes the world a better place instead of living in a defeated puddle on the floor.
Sincerely,
Katy
Let me first start off by saying that my son is doing well. He is off his tube. He lost weight initially but has evened out. He still takes creon after a severe bout of constipation with intermittant diarrhea on a short trial without. He has had a few lung infections that responded well to abx. His FEV1 has dropped to 78% recently but we are working with meds to help that. At his pulmo appt this week we were also made aware that his adenoids may be growing back, had never heard that before! Without his amazing doctors, his pediatrician, his pulmonologist and his GI, he would not be doing so well. They are responsive, caring and intelligent which is all we can ask for in our doctors.
When I was last here, May of 2011, I was frantic. My son was suffering and no one seemed to know what to do for him. It was my full-time job to research, ask questions and seek the best doctor in hopes that he or she could answer the mystery question of what was going on with Owen. I was supported here despite my son not being diagnosed with CF. I laugh to remember my signature which stated all of his symptoms and NOT CF! I was never sure what to think but this felt like the right place to be with all he had/has going on.
On the advice (much appreciated) of people from here, we went to a CF center. We had been all over the country prior, in desperate search of elusive answers. When we waivered with who to continue care with, we would just keep seeking help. We saw one doctor during this time who had a different set of ideas about my son, my husband and myself. After ONE visit with this doctor and a couple of follow-up phone calls, this doctor decided I was mentally ill and had Munchausen by proxy. I shake as I write this. Anyway, even after this doctor had diagnosed a staph infection from a sputum culture and prescribed CPT, the claim was that I relayed information about my son to elicit attention. Because of where I live, my two children were taken from me and my husband and placed into foster care. On that fateful night, I thought I would die. I won't even describe this horror much more because I trust you can all imagine.
In our county, any case like this currently requires immediate removal of all children. Only because God is there and does have power, the system worked as it should and my kids were returned but it took over three weeks. NONE of our other doctors endorsed the accusation. Each of them supported us through it all and worked with Child Protection to prove that I am a good mom who tried to get my child help. Again, I could go on and on about what was said, how wrong it was, and what should be changed in our system but I will restrain because, frankly, it is too much. There is too much wrong with a system that gives one person so much power. There is too much wrong with a system that invokes trauma and apologizes later when the mistake is uncovered. I would only like to say one thing about the court process. When the case was dismissed, the judge did apologized in such a sincere way, I actually accepted it, coming from him.
We will never, ever be the same again, not ever. It was a tradgedy for my family that should never have happened. My children are doing so amazingly well now. They have a resilience that even carried me through as well! We are such a team, in my family, and we know by experience that nothing can knock us down. Nothing. The strength of our love, our family and our friends and truth prevailing are the only reasons we survived this. It was a fight for all of our lives. Ironically, we became very good friends with the foster parents who claim they knew when my kids walked through the door that this was a mistake. I even watch their children since I am one of the few weirdo moms who wants a housefull of excited, happy 5-10 year olds!
I wanted to share this and some lessons learned here because, all along, in my mind, I have replayed similar posts of desperation from other parents here. I am fully aware that we are and were no different than many other parents with a lack of diagnosis for their child. I wanted to let people here know that while this is a crazy rare event, it does happen. When you are in this situation, there are people who will not understand.
We had stopped looking for a diagnosis long before "it" happened. We wanted doctors to treat our son when he was sick. We wanted them to be open to preventative measures since he is prone to lung infections,etc. We were more terrified of waking up one day only to learn he had gotten worse because of something we should have been doing for him but didn't because no one knew to do it. What happens when there is no diagnosis is that doctors don't know what to do and often then nothing is done. Our "real" pulmonologist is an amazing man. He cares for all of his patients. Something I did learn is that doctors need a history with a patient, especially a child. They need to see them through the good (to get baselines) and the bads (to know when to treat symptoms aggressively). This is my BIGGEST regret in our journey. We now know that doctors need the chance to get to know our son and then his issues become glaring on their own, no need to describe them, the doctors see them. That is also why I say shame on the doctor who reported us. It is a doctor's responsibility to know this even when a parent doesn't. That we were reported after one visit with this doctor has just recently become laughable. Maybe you wonder what I think of this doctor. I will not lie, I have said very hateful things and have had my own well-being challenged when filled with that hate. But, time has taught me that even this doctor needs some sympathy. You cannot willingly tear a beautiful family (if I do say so myself) apart without something being terribly wrong in your own life, head, heart.I hope someday this person finds peace in order to carry out the compassionate responsibilites of the job of being a doctor.
Posting here now is kind of the last part of my healing journey (well, not really since some wounds never heal) but I stayed awake worrying others could find themselves in this position too. I am not saying anyone should change what they do. Parents shouuld be allowed to be frantic when their child is not well. But the world is a crazy place sometimes and if you only tuck this story in the back of your mind, I will feel I have made a difference and maybe even helped someone. For the last year plus, we have had what we wanted all along, doctors to help our son. Wanting this is not a crime. But having good doctors is priceless and I thank the stars above we are in this position we are in now. Now, the focus is returned to my son, who never should have been lost in the picture.
I won't probably post on this forum in the future because we have what we need to care for our son. We can let his doctors tell us what needs to be done. I think about the amazing people here and I will always have hope for everyone to get the help they need to love life, feel healthy, and have emotional support. You are an amazing group of people and you have taught me soooooo much. I owe so much of my knowledge to you. I am only grateful now to be allowed to just be mommy and have doctors to rely on so my son is living the best life he can.
Thank you for reading this and honoring my need to bring it up. I will never disclose the name of this doctor for many reasons but if I can help in any other ways, let me know. I want to be a survivor who makes the world a better place instead of living in a defeated puddle on the floor.
Sincerely,
Katy