Guest guest Posted May 18, 2011 Report Share Posted May 18, 2011 Just wanted to comment on the baby and reflux. Unfortunatlely the most common med in the US available for reflux is Reglan and it has LOTS of side effects that are hard to know with a baby. I would do more research if they suggest Reglan before giving it to any child. Domperidone is available in the rest of the world but American RX companies do not want to make it because they cannot make any money on it due to patents overseas. I use it for severe gastroparesis and it is a LIFE SAVER. I have to order it from New Zealand but pay less than 1/2% of what I would pay if I got it here being formulated at a custom RX. BARBIE ________________________________ From: osdbmom <osdbmom@...> Sent: Wed, May 18, 2011 5:40:24 AM Subject: Re: Teri Cerda I agree. When my kids were little, their pulmo would talk to me and then to each child individually, asking how they had been, how this or that felt, asking them to name the meds they take daily and if they had skipped any, and at first, it kind of ticked me off, bc I thought she didnt trust me or something, but then I realized this is exactly whst she is doing, she is developing a good relationship with them, letting them take responsibility for their problems and medicines and its really good thing, now as they get older they are very concise and clear with the dr, very very good relationship with her and able to explain their concerns. valarie mom to 3 w/cvid > > Although I don't think it was mentioned in the posted article, the girls were >eventually returned to their parents. This is really just starting to hit the >media and I hope it blows over quickly for their sake. Unfortunately, I've heard >this happening to more and more people recently. In most of the cases I'm aware >of, they have documented immune deficiencies and are still being accused (either >the patient themselves or caregivers). I think Ursula made a good point about >helping our kids to take a more active role in their communication with their >physicians, even at a young age. It's important for them for take on some >responsiblity for their health, but it's not always easy for us parents to let >them. I have to force myself to sit quietly to give my kids a chance to share >things from their perspectives - I only intervene when necessary :-) > > By the way, I have wondered if there were docs along our journey who thought I >had gone off the deep end... I sure felt like I had at times! > > (NEMO carrier) > Mom to Hayden (16-unknown PID) > Evan (16-unknown PID) > Conner (16-NEMO; bone marrow transplant 8/17/07) > Kelsey (15-unknown PID and NEMO carrier) > Wife to (unknown PID) > www.caringbridge.org/visit/smithkids > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2011 Report Share Posted May 18, 2011 Just wanted to comment on the baby and reflux. Unfortunatlely the most common med in the US available for reflux is Reglan and it has LOTS of side effects that are hard to know with a baby. I would do more research if they suggest Reglan before giving it to any child. Domperidone is available in the rest of the world but American RX companies do not want to make it because they cannot make any money on it due to patents overseas. I use it for severe gastroparesis and it is a LIFE SAVER. I have to order it from New Zealand but pay less than 1/2% of what I would pay if I got it here being formulated at a custom RX. BARBIE ________________________________ From: osdbmom <osdbmom@...> Sent: Wed, May 18, 2011 5:40:24 AM Subject: Re: Teri Cerda I agree. When my kids were little, their pulmo would talk to me and then to each child individually, asking how they had been, how this or that felt, asking them to name the meds they take daily and if they had skipped any, and at first, it kind of ticked me off, bc I thought she didnt trust me or something, but then I realized this is exactly whst she is doing, she is developing a good relationship with them, letting them take responsibility for their problems and medicines and its really good thing, now as they get older they are very concise and clear with the dr, very very good relationship with her and able to explain their concerns. valarie mom to 3 w/cvid > > Although I don't think it was mentioned in the posted article, the girls were >eventually returned to their parents. This is really just starting to hit the >media and I hope it blows over quickly for their sake. Unfortunately, I've heard >this happening to more and more people recently. In most of the cases I'm aware >of, they have documented immune deficiencies and are still being accused (either >the patient themselves or caregivers). I think Ursula made a good point about >helping our kids to take a more active role in their communication with their >physicians, even at a young age. It's important for them for take on some >responsiblity for their health, but it's not always easy for us parents to let >them. I have to force myself to sit quietly to give my kids a chance to share >things from their perspectives - I only intervene when necessary :-) > > By the way, I have wondered if there were docs along our journey who thought I >had gone off the deep end... I sure felt like I had at times! > > (NEMO carrier) > Mom to Hayden (16-unknown PID) > Evan (16-unknown PID) > Conner (16-NEMO; bone marrow transplant 8/17/07) > Kelsey (15-unknown PID and NEMO carrier) > Wife to (unknown PID) > www.caringbridge.org/visit/smithkids > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2011 Report Share Posted May 18, 2011 Sadly the only way to know is to look up your state codes to see what they say. Laws change frequently and I stay up on what I can about children in particular. When I looked at the law and was speaking to an attorney they were the ones that used that number. I guess I should research it further to give my claim validity. You can go to your state legislative page and search children and medical care if you cannot find it you can ask them to search for you to find what you are looking for. ( I am talking about the Legislative librarians. ) The search can be done in the library or online. BARBIE ________________________________ From: Terri Cahill <terric2000@...> PEDPID < > Sent: Wed, May 18, 2011 6:18:48 AM Subject: RE: Re: Teri Cerda I am still very new to this group as well as a PID diagnosis... Can you tell me where I can get the info or a list of the 15 states Barbie was mentioning below? I started my quest a while back to obtain as much info " of all kinds " as possible and this would be a good area for me to start gaining additional info as well. Also, if you have any websites or any reference material that you could suggest, i would greatly appreciate it. In respose to Teri Cerda - Oh my, my heart goes out to her and her family. I started to cryas I was reading everything... yes, i can definitely feel like i or anyone could be in her situation... how painful and awful. Something like that affects every single thing i your life ~ children, work, money, sanity, relationships, the list is endless. I know I am so greatful to have the pediatrician that my son has and I feel like he is a partner in this diagnosis and general care for him. If someone doesn't have that, I recommend finding a Dr. that you are confident in and they believe in you, your quest and your children. There are so many Dr.s out there, some great, some good and some not so good (being polite). If you ask them for help, they should help you... If they don't, they are not following the oath they agreed to (in my opinion) and you need to find someone else. Like posted in several situations and topics - go with your gut. You guys post so many things that are relevant to me, my situation, potential future situations, and things I need to keep in mind and see if and how it fits for us-- thank you. Terri Mom to , age 3 - with Brutons & history of ulcerated Colitis, 10 and 11 months. From: mother5590@... Date: Tue, 17 May 2011 21:43:03 -0700 Subject: Re: Re: Teri Cerda The other issue is one that I have worked on for several years that is in reference to kids having TOO much say in their care. In 15 states kids starting at 13 have the right to choose what care they want and do not want. This means that if the refuse to have care they have the " right " to do so without their parents. I lost the right to have access to all medical records or care when my kids turned 13. My teenage daughter was allowed to sign for surgery at 14 and I could do NOTHING. If a child is angry and wants to the leave the parent out completely the Dr. can ONLY talk to the child about things and not the parents. This is real! My daughter had surgery {unnecessary} without my knowledge. I took her to the appointment and she had the procedure in the Dr. office while I was in the waiting room but I had NO IDEA> She later hemorrhaged and came to me is how I found out. That is one of the reasons I left WA state several years ago because my son did not want to do his infusions after they took him off to retest after the summer. I felt like I had NO choice but to get to a state that it was MY choice that he stay on infusions til he could mature enough to understand things better. Last year someone brought a bill to the Legislature to change the age to 10 but it failed. It is important that you know this about your state. Fortunately here in WA there is a special exception for kids that have mental health issues. I had to go to court to get a waiver to continue being able to make choices for my son. BARBIE ________________________________ From: kristinz4 <kristin-smith@...> Sent: Tue, May 17, 2011 6:20:53 PM Subject: Re: Teri Cerda Although I don't think it was mentioned in the posted article, the girls were eventually returned to their parents. This is really just starting to hit the media and I hope it blows over quickly for their sake. Unfortunately, I've heard this happening to more and more people recently. In most of the cases I'm aware of, they have documented immune deficiencies and are still being accused (either the patient themselves or caregivers). I think Ursula made a good point about helping our kids to take a more active role in their communication with their physicians, even at a young age. It's important for them for take on some responsiblity for their health, but it's not always easy for us parents to let them. I have to force myself to sit quietly to give my kids a chance to share things from their perspectives - I only intervene when necessary :-) By the way, I have wondered if there were docs along our journey who thought I had gone off the deep end... I sure felt like I had at times! (NEMO carrier) Mom to Hayden (16-unknown PID) Evan (16-unknown PID) Conner (16-NEMO; bone marrow transplant 8/17/07) Kelsey (15-unknown PID and NEMO carrier) Wife to (unknown PID) www.caringbridge.org/visit/smithkids Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2011 Report Share Posted May 18, 2011 Thank you so much for the reference information. I really need to be up on my states laws. We just moved here 3 years ago so I feel new to everything, including their laws. Thanks again! Terri From: mother5590@... Date: Wed, 18 May 2011 07:46:34 -0700 Subject: Re: Re: Teri Cerda Sadly the only way to know is to look up your state codes to see what they say. Laws change frequently and I stay up on what I can about children in particular. When I looked at the law and was speaking to an attorney they were the ones that used that number. I guess I should research it further to give my claim validity. You can go to your state legislative page and search children and medical care if you cannot find it you can ask them to search for you to find what you are looking for. ( I am talking about the Legislative librarians. ) The search can be done in the library or online. BARBIE ________________________________ From: Terri Cahill <terric2000@...> PEDPID < > Sent: Wed, May 18, 2011 6:18:48 AM Subject: RE: Re: Teri Cerda I am still very new to this group as well as a PID diagnosis... Can you tell me where I can get the info or a list of the 15 states Barbie was mentioning below? I started my quest a while back to obtain as much info " of all kinds " as possible and this would be a good area for me to start gaining additional info as well. Also, if you have any websites or any reference material that you could suggest, i would greatly appreciate it. In respose to Teri Cerda - Oh my, my heart goes out to her and her family. I started to cryas I was reading everything... yes, i can definitely feel like i or anyone could be in her situation... how painful and awful. Something like that affects every single thing i your life ~ children, work, money, sanity, relationships, the list is endless. I know I am so greatful to have the pediatrician that my son has and I feel like he is a partner in this diagnosis and general care for him. If someone doesn't have that, I recommend finding a Dr. that you are confident in and they believe in you, your quest and your children. There are so many Dr.s out there, some great, some good and some not so good (being polite). If you ask them for help, they should help you... If they don't, they are not following the oath they agreed to (in my opinion) and you need to find someone else. Like posted in several situations and topics - go with your gut. You guys post so many things that are relevant to me, my situation, potential future situations, and things I need to keep in mind and see if and how it fits for us-- thank you. Terri Mom to , age 3 - with Brutons & history of ulcerated Colitis, 10 and 11 months. From: mother5590@... Date: Tue, 17 May 2011 21:43:03 -0700 Subject: Re: Re: Teri Cerda The other issue is one that I have worked on for several years that is in reference to kids having TOO much say in their care. In 15 states kids starting at 13 have the right to choose what care they want and do not want. This means that if the refuse to have care they have the " right " to do so without their parents. I lost the right to have access to all medical records or care when my kids turned 13. My teenage daughter was allowed to sign for surgery at 14 and I could do NOTHING. If a child is angry and wants to the leave the parent out completely the Dr. can ONLY talk to the child about things and not the parents. This is real! My daughter had surgery {unnecessary} without my knowledge. I took her to the appointment and she had the procedure in the Dr. office while I was in the waiting room but I had NO IDEA> She later hemorrhaged and came to me is how I found out. That is one of the reasons I left WA state several years ago because my son did not want to do his infusions after they took him off to retest after the summer. I felt like I had NO choice but to get to a state that it was MY choice that he stay on infusions til he could mature enough to understand things better. Last year someone brought a bill to the Legislature to change the age to 10 but it failed. It is important that you know this about your state. Fortunately here in WA there is a special exception for kids that have mental health issues. I had to go to court to get a waiver to continue being able to make choices for my son. BARBIE ________________________________ From: kristinz4 <kristin-smith@...> Sent: Tue, May 17, 2011 6:20:53 PM Subject: Re: Teri Cerda Although I don't think it was mentioned in the posted article, the girls were eventually returned to their parents. This is really just starting to hit the media and I hope it blows over quickly for their sake. Unfortunately, I've heard this happening to more and more people recently. In most of the cases I'm aware of, they have documented immune deficiencies and are still being accused (either the patient themselves or caregivers). I think Ursula made a good point about helping our kids to take a more active role in their communication with their physicians, even at a young age. It's important for them for take on some responsiblity for their health, but it's not always easy for us parents to let them. I have to force myself to sit quietly to give my kids a chance to share things from their perspectives - I only intervene when necessary :-) By the way, I have wondered if there were docs along our journey who thought I had gone off the deep end... I sure felt like I had at times! (NEMO carrier) Mom to Hayden (16-unknown PID) Evan (16-unknown PID) Conner (16-NEMO; bone marrow transplant 8/17/07) Kelsey (15-unknown PID and NEMO carrier) Wife to (unknown PID) www.caringbridge.org/visit/smithkids Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2011 Report Share Posted May 19, 2011 One family in our state paid for the following experts: a ped GI who is on staff at NYU med as well as in private practice, a forensic child abuse expert with an expertise in MSBP, a developmental pediatrican and a DAN doctor. 2 of the 4 were flown in, so travel expenses were also incurred. The rest of the experts (including an immunologist) thankfully volunteered their medical reviews and testimonies. Even with all of the volunteers, the family incurred over $50K in expenses for the dependency hearing. The lawyer slashed her fees considerably. The judge ordered reunification. It's been a year, and they are not even close to that being achieved, plus they have to reimburse the expenses associated with their kids' foster care. Their kids haven't received medical care in a year (except for the psych meds the State almost always gets permission to use on kids in " care. " ). PS -- I am so sorry to hear about your sister's situation. > > > > From: S <RobRose@> > > Subject: Teri Cerda > > > > Date: Tuesday, May 17, 2011, 9:56 PM > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > I haven't posted here in years, but when I saw the story on News > >http://news./s/yblog_thecutline/20110517/ts_yblog_thecutline/extreme-m\ akeover-dubious-claims-edition > >n > > > > > > I felt compelled to inquire here to find out if anybody knows about this family > > > > (they are members of the list) and knows what is currently going on. > > > > > > > > > > I live in a state that is a hot bed for false accusations of medical abuse (aka > > > > Munchausen Syndrome By Proxy). Generally the parents of GI and Immuno kids are > > > targeted. While the tendency of the general public is to assume they must be > > guilty of something, I do not make the assumption, because in the cases I know > > > of, the parents were guilty of nothing. I am currently in the process of > > arranging for a training for parents in my city led by lawyers who are expert > >in > > > > this area, so that parents know how to protect themselves from this type of > > accusation and/or defend themselves when it happens. I am wondering if this > > family has reached out to the PID community or if they have gotten proper legal > > > > council. > > > > > > > > Thx, > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2011 Report Share Posted May 19, 2011 One family in our state paid for the following experts: a ped GI who is on staff at NYU med as well as in private practice, a forensic child abuse expert with an expertise in MSBP, a developmental pediatrican and a DAN doctor. 2 of the 4 were flown in, so travel expenses were also incurred. The rest of the experts (including an immunologist) thankfully volunteered their medical reviews and testimonies. Even with all of the volunteers, the family incurred over $50K in expenses for the dependency hearing. The lawyer slashed her fees considerably. The judge ordered reunification. It's been a year, and they are not even close to that being achieved, plus they have to reimburse the expenses associated with their kids' foster care. Their kids haven't received medical care in a year (except for the psych meds the State almost always gets permission to use on kids in " care. " ). PS -- I am so sorry to hear about your sister's situation. > > > > From: S <RobRose@> > > Subject: Teri Cerda > > > > Date: Tuesday, May 17, 2011, 9:56 PM > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > I haven't posted here in years, but when I saw the story on News > >http://news./s/yblog_thecutline/20110517/ts_yblog_thecutline/extreme-m\ akeover-dubious-claims-edition > >n > > > > > > I felt compelled to inquire here to find out if anybody knows about this family > > > > (they are members of the list) and knows what is currently going on. > > > > > > > > > > I live in a state that is a hot bed for false accusations of medical abuse (aka > > > > Munchausen Syndrome By Proxy). Generally the parents of GI and Immuno kids are > > > targeted. While the tendency of the general public is to assume they must be > > guilty of something, I do not make the assumption, because in the cases I know > > > of, the parents were guilty of nothing. I am currently in the process of > > arranging for a training for parents in my city led by lawyers who are expert > >in > > > > this area, so that parents know how to protect themselves from this type of > > accusation and/or defend themselves when it happens. I am wondering if this > > family has reached out to the PID community or if they have gotten proper legal > > > > council. > > > > > > > > Thx, > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2011 Report Share Posted May 19, 2011 That's because States are trying to slip in these " children's rights " initiatives that are really not about the rights of the child, but about the power of the government to parent our children. > > The other issue is one that I have worked on for several years that is in > reference to kids having TOO much say in their care. In 15 states kids starting > at 13 have the right to choose what care they want and do not want. This means > that if the refuse to have care they have the " right " to do so without their > parents. I lost the right to have access to all medical records or care when my > kids turned 13. My teenage daughter was allowed to sign for surgery at 14 and I > could do NOTHING. If a child is angry and wants to the leave the parent out > completely the Dr. can ONLY talk to the child about things and not the parents. > This is real! My daughter had surgery {unnecessary} without my knowledge. I took > her to the appointment and she had the procedure in the Dr. office while I was > in the waiting room but I had NO IDEA> She later hemorrhaged and came to me is > how I found out. > > That is one of the reasons I left WA state several years ago because my son did > not want to do his infusions after they took him off to retest after the summer. > I felt like I had NO choice but to get to a state that it was MY choice that he > stay on infusions til he could mature enough to understand things better. Last > year someone brought a bill to the Legislature to change the age to 10 but it > failed. It is important that you know this about your state. > > Fortunately here in WA there is a special exception for kids that have mental > health issues. I had to go to court to get a waiver to continue being able to > make choices for my son. > > > > > BARBIE > > > > > ________________________________ > From: kristinz4 <kristin-smith@...> > > Sent: Tue, May 17, 2011 6:20:53 PM > Subject: Re: Teri Cerda > > > Although I don't think it was mentioned in the posted article, the girls were > eventually returned to their parents. This is really just starting to hit the > media and I hope it blows over quickly for their sake. Unfortunately, I've heard > this happening to more and more people recently. In most of the cases I'm aware > of, they have documented immune deficiencies and are still being accused (either > the patient themselves or caregivers). I think Ursula made a good point about > helping our kids to take a more active role in their communication with their > physicians, even at a young age. It's important for them for take on some > responsiblity for their health, but it's not always easy for us parents to let > them. I have to force myself to sit quietly to give my kids a chance to share > things from their perspectives - I only intervene when necessary :-) > > By the way, I have wondered if there were docs along our journey who thought I > had gone off the deep end... I sure felt like I had at times! > > (NEMO carrier) > Mom to Hayden (16-unknown PID) > Evan (16-unknown PID) > Conner (16-NEMO; bone marrow transplant 8/17/07) > Kelsey (15-unknown PID and NEMO carrier) > Wife to (unknown PID) > www.caringbridge.org/visit/smithkids > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2011 Report Share Posted May 19, 2011 That's because States are trying to slip in these " children's rights " initiatives that are really not about the rights of the child, but about the power of the government to parent our children. > > The other issue is one that I have worked on for several years that is in > reference to kids having TOO much say in their care. In 15 states kids starting > at 13 have the right to choose what care they want and do not want. This means > that if the refuse to have care they have the " right " to do so without their > parents. I lost the right to have access to all medical records or care when my > kids turned 13. My teenage daughter was allowed to sign for surgery at 14 and I > could do NOTHING. If a child is angry and wants to the leave the parent out > completely the Dr. can ONLY talk to the child about things and not the parents. > This is real! My daughter had surgery {unnecessary} without my knowledge. I took > her to the appointment and she had the procedure in the Dr. office while I was > in the waiting room but I had NO IDEA> She later hemorrhaged and came to me is > how I found out. > > That is one of the reasons I left WA state several years ago because my son did > not want to do his infusions after they took him off to retest after the summer. > I felt like I had NO choice but to get to a state that it was MY choice that he > stay on infusions til he could mature enough to understand things better. Last > year someone brought a bill to the Legislature to change the age to 10 but it > failed. It is important that you know this about your state. > > Fortunately here in WA there is a special exception for kids that have mental > health issues. I had to go to court to get a waiver to continue being able to > make choices for my son. > > > > > BARBIE > > > > > ________________________________ > From: kristinz4 <kristin-smith@...> > > Sent: Tue, May 17, 2011 6:20:53 PM > Subject: Re: Teri Cerda > > > Although I don't think it was mentioned in the posted article, the girls were > eventually returned to their parents. This is really just starting to hit the > media and I hope it blows over quickly for their sake. Unfortunately, I've heard > this happening to more and more people recently. In most of the cases I'm aware > of, they have documented immune deficiencies and are still being accused (either > the patient themselves or caregivers). I think Ursula made a good point about > helping our kids to take a more active role in their communication with their > physicians, even at a young age. It's important for them for take on some > responsiblity for their health, but it's not always easy for us parents to let > them. I have to force myself to sit quietly to give my kids a chance to share > things from their perspectives - I only intervene when necessary :-) > > By the way, I have wondered if there were docs along our journey who thought I > had gone off the deep end... I sure felt like I had at times! > > (NEMO carrier) > Mom to Hayden (16-unknown PID) > Evan (16-unknown PID) > Conner (16-NEMO; bone marrow transplant 8/17/07) > Kelsey (15-unknown PID and NEMO carrier) > Wife to (unknown PID) > www.caringbridge.org/visit/smithkids > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2011 Report Share Posted May 19, 2011 You are so right -- I used to work as a publicist and I always tell my friends and family, " do not talk to the media about anything unless I prep you! " > > > > > > From: S <RobRose@> > > > Subject: Teri Cerda > > > > > > Date: Tuesday, May 17, 2011, 9:56 PM > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > I haven't posted here in years, but when I saw the story on News > > >http://news./s/yblog_thecutline/20110517/ts_yblog_thecutline/extreme-m\ akeover-dubious-claims-edition > > >n > > > > > > > > > I felt compelled to inquire here to find out if anybody knows about this family > > > > > > (they are members of the list) and knows what is currently going on. > > > > > > > > > > > > > > > I live in a state that is a hot bed for false accusations of medical abuse (aka > > > > > > Munchausen Syndrome By Proxy). Generally the parents of GI and Immuno kids are > > > > > targeted. While the tendency of the general public is to assume they must be > > > guilty of something, I do not make the assumption, because in the cases I know > > > > > of, the parents were guilty of nothing. I am currently in the process of > > > arranging for a training for parents in my city led by lawyers who are expert > > >in > > > > > > this area, so that parents know how to protect themselves from this type of > > > accusation and/or defend themselves when it happens. I am wondering if this > > > family has reached out to the PID community or if they have gotten proper legal > > > > > > council. > > > > > > > > > > > > Thx, > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2011 Report Share Posted May 19, 2011 You are so right -- I used to work as a publicist and I always tell my friends and family, " do not talk to the media about anything unless I prep you! " > > > > > > From: S <RobRose@> > > > Subject: Teri Cerda > > > > > > Date: Tuesday, May 17, 2011, 9:56 PM > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > I haven't posted here in years, but when I saw the story on News > > >http://news./s/yblog_thecutline/20110517/ts_yblog_thecutline/extreme-m\ akeover-dubious-claims-edition > > >n > > > > > > > > > I felt compelled to inquire here to find out if anybody knows about this family > > > > > > (they are members of the list) and knows what is currently going on. > > > > > > > > > > > > > > > I live in a state that is a hot bed for false accusations of medical abuse (aka > > > > > > Munchausen Syndrome By Proxy). Generally the parents of GI and Immuno kids are > > > > > targeted. While the tendency of the general public is to assume they must be > > > guilty of something, I do not make the assumption, because in the cases I know > > > > > of, the parents were guilty of nothing. I am currently in the process of > > > arranging for a training for parents in my city led by lawyers who are expert > > >in > > > > > > this area, so that parents know how to protect themselves from this type of > > > accusation and/or defend themselves when it happens. I am wondering if this > > > family has reached out to the PID community or if they have gotten proper legal > > > > > > council. > > > > > > > > > > > > Thx, > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2011 Report Share Posted May 19, 2011 Here in WA I think there was OTHER motivation and as a nurse working with Pregnant women I GET IT ! the reason is that 13yo girls were getting pregnant and but live in less than appropriate homes with abuse or neglect. I have seen it many times. The girls get pregnant because they should not be having sex and do not have access to medical care for birth control or after they get pregnant. ( it is different now that pregnancy tests are available at the $$ stores) Many of them try to stop the pregnancy on their own or their parents kick them out. It is a TOUGH problem and it too is real. But..... when we have chronically ill kids it puts us in a MAJOR problem if we cannot access records or talk to the Dr. without the child' permission or they refuse care or go in on their own for procedures . Particularly if they have emotional issues or NORMAL teenage angst going on. Or they are trying to figure out how to accept their illness and want more power that may be inappropriate for their maturity. Some doctors do not really like it either because they feel caught in the middle. But they have to enforce the law the way it is interpreted. I have tried to work with lawmakers in our state and it has not been effective as of yet since the state denies there is a problem or that it is being interpreted in the way that it is. I am not sure where it I am going to go with the issue next. BARBIE ________________________________ From: S <RobRose@...> Sent: Wed, May 18, 2011 11:52:32 PM Subject: Re: Teri Cerda That's because States are trying to slip in these " children's rights " initiatives that are really not about the rights of the child, but about the power of the government to parent our children. > > The other issue is one that I have worked on for several years that is in > reference to kids having TOO much say in their care. In 15 states kids >starting > > at 13 have the right to choose what care they want and do not want. This means > that if the refuse to have care they have the " right " to do so without their > parents. I lost the right to have access to all medical records or care when my > > kids turned 13. My teenage daughter was allowed to sign for surgery at 14 and I > > could do NOTHING. If a child is angry and wants to the leave the parent out > completely the Dr. can ONLY talk to the child about things and not the parents. > > This is real! My daughter had surgery {unnecessary} without my knowledge. I >took > > her to the appointment and she had the procedure in the Dr. office while I was > in the waiting room but I had NO IDEA> She later hemorrhaged and came to me is > how I found out. > > That is one of the reasons I left WA state several years ago because my son did > > not want to do his infusions after they took him off to retest after the >summer. > > I felt like I had NO choice but to get to a state that it was MY choice that he > > stay on infusions til he could mature enough to understand things better. Last > year someone brought a bill to the Legislature to change the age to 10 but it > failed. It is important that you know this about your state. > > Fortunately here in WA there is a special exception for kids that have mental > health issues. I had to go to court to get a waiver to continue being able to > make choices for my son. > > > > > BARBIE > > > > > ________________________________ > From: kristinz4 <kristin-smith@...> > > Sent: Tue, May 17, 2011 6:20:53 PM > Subject: Re: Teri Cerda > > > Although I don't think it was mentioned in the posted article, the girls were > eventually returned to their parents. This is really just starting to hit the > media and I hope it blows over quickly for their sake. Unfortunately, I've >heard > > this happening to more and more people recently. In most of the cases I'm aware > > of, they have documented immune deficiencies and are still being accused >(either > > the patient themselves or caregivers). I think Ursula made a good point about > helping our kids to take a more active role in their communication with their > physicians, even at a young age. It's important for them for take on some > responsiblity for their health, but it's not always easy for us parents to let > them. I have to force myself to sit quietly to give my kids a chance to share > things from their perspectives - I only intervene when necessary :-) > > By the way, I have wondered if there were docs along our journey who thought I > had gone off the deep end... I sure felt like I had at times! > > (NEMO carrier) > Mom to Hayden (16-unknown PID) > Evan (16-unknown PID) > Conner (16-NEMO; bone marrow transplant 8/17/07) > Kelsey (15-unknown PID and NEMO carrier) > Wife to (unknown PID) > www.caringbridge.org/visit/smithkids > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2011 Report Share Posted May 19, 2011 Here in WA I think there was OTHER motivation and as a nurse working with Pregnant women I GET IT ! the reason is that 13yo girls were getting pregnant and but live in less than appropriate homes with abuse or neglect. I have seen it many times. The girls get pregnant because they should not be having sex and do not have access to medical care for birth control or after they get pregnant. ( it is different now that pregnancy tests are available at the $$ stores) Many of them try to stop the pregnancy on their own or their parents kick them out. It is a TOUGH problem and it too is real. But..... when we have chronically ill kids it puts us in a MAJOR problem if we cannot access records or talk to the Dr. without the child' permission or they refuse care or go in on their own for procedures . Particularly if they have emotional issues or NORMAL teenage angst going on. Or they are trying to figure out how to accept their illness and want more power that may be inappropriate for their maturity. Some doctors do not really like it either because they feel caught in the middle. But they have to enforce the law the way it is interpreted. I have tried to work with lawmakers in our state and it has not been effective as of yet since the state denies there is a problem or that it is being interpreted in the way that it is. I am not sure where it I am going to go with the issue next. BARBIE ________________________________ From: S <RobRose@...> Sent: Wed, May 18, 2011 11:52:32 PM Subject: Re: Teri Cerda That's because States are trying to slip in these " children's rights " initiatives that are really not about the rights of the child, but about the power of the government to parent our children. > > The other issue is one that I have worked on for several years that is in > reference to kids having TOO much say in their care. In 15 states kids >starting > > at 13 have the right to choose what care they want and do not want. This means > that if the refuse to have care they have the " right " to do so without their > parents. I lost the right to have access to all medical records or care when my > > kids turned 13. My teenage daughter was allowed to sign for surgery at 14 and I > > could do NOTHING. If a child is angry and wants to the leave the parent out > completely the Dr. can ONLY talk to the child about things and not the parents. > > This is real! My daughter had surgery {unnecessary} without my knowledge. I >took > > her to the appointment and she had the procedure in the Dr. office while I was > in the waiting room but I had NO IDEA> She later hemorrhaged and came to me is > how I found out. > > That is one of the reasons I left WA state several years ago because my son did > > not want to do his infusions after they took him off to retest after the >summer. > > I felt like I had NO choice but to get to a state that it was MY choice that he > > stay on infusions til he could mature enough to understand things better. Last > year someone brought a bill to the Legislature to change the age to 10 but it > failed. It is important that you know this about your state. > > Fortunately here in WA there is a special exception for kids that have mental > health issues. I had to go to court to get a waiver to continue being able to > make choices for my son. > > > > > BARBIE > > > > > ________________________________ > From: kristinz4 <kristin-smith@...> > > Sent: Tue, May 17, 2011 6:20:53 PM > Subject: Re: Teri Cerda > > > Although I don't think it was mentioned in the posted article, the girls were > eventually returned to their parents. This is really just starting to hit the > media and I hope it blows over quickly for their sake. Unfortunately, I've >heard > > this happening to more and more people recently. In most of the cases I'm aware > > of, they have documented immune deficiencies and are still being accused >(either > > the patient themselves or caregivers). I think Ursula made a good point about > helping our kids to take a more active role in their communication with their > physicians, even at a young age. It's important for them for take on some > responsiblity for their health, but it's not always easy for us parents to let > them. I have to force myself to sit quietly to give my kids a chance to share > things from their perspectives - I only intervene when necessary :-) > > By the way, I have wondered if there were docs along our journey who thought I > had gone off the deep end... I sure felt like I had at times! > > (NEMO carrier) > Mom to Hayden (16-unknown PID) > Evan (16-unknown PID) > Conner (16-NEMO; bone marrow transplant 8/17/07) > Kelsey (15-unknown PID and NEMO carrier) > Wife to (unknown PID) > www.caringbridge.org/visit/smithkids > > > > > Quote Link to comment Share on other sites More sharing options...
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