Guest guest Posted May 17, 2011 Report Share Posted May 17, 2011 That's cold-blooded......anyone can accuse anyone of anything, but accusing a parent who cares about their children of hurting the children, must be especially horrible....God Bless them.... From: S <RobRose@...> Subject: Re: Teri Cerda Date: Tuesday, May 17, 2011, 10:52 PM  I'm telling you it doesn't matter. In these cases, here is what you are up against... States receive federal dollars for children placed in foster care -- there is a $ incentive. On top of what they get, they no longer have to pay for medical care (this family was on Medicaid at the time of the video) because they claim the symptoms are fabricated. Yes, they will go as far as to claim that labs are fabricated too -- I've heard it all. In 2 current cases in my state, they are claiming that a total of 6 children with autism diagnoses don't really have autism (this involves 2 separate families, BTW). The State's expert testified that their autistic behaviors were caused by the effect of having disturbed parents who pretend that their children are disabled (ie: learned helplessness). In one case, the " expert " claimed that an accused woman was able to cause herself to go into early labor in order to cause prematurity in one of her babies. She was in the hospital, being treated for preterm labor, when she was supposedly able to pull off this stunt. These are psychologists testifying, yet they are treated as if they have medical degrees. As far as PID, 4 kids currently in our state's care were on IVIG for ID and also one had the further case of Henoch-Schonlein Purpura. Their immunologist testified on their behalf. He was so upset by this case, he had a heart attack after it was over. The other incentive is for the psychologists I have mentioned. A small group of them in this country (15-20) have the desire to see MSBP listed in the DSM as a stand-alone diagnosis. In order to achieve that, they must show an increase in the amount of times it is diagnosed. These psychs are paid well. One that is currently being investigated by our state's psych board made $250K in part-time work diagnosing and testifying that parents have MSBP. Her contract with the state makes it clear what is going on. An attorney involved told me he has never seen such a contract before -- it pretty much states that her job is to find that both the mothers and fathers who are brought to her by CPS have MSBP. She has no problem with that as this person has no soul. > > 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-ma\ keover-dubious-claims-edition > > 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 17, 2011 Report Share Posted May 17, 2011 I will do that. Rule number one (until I can share what the attorney has to say) is do not piss off a doctor and think twice about filing a complaint at any medical facility. Most accusations start with something of that nature. > > > > > > > > > > I dont understand. Wouldn't she had to have had a diagnosis to get the > IVIG?? > > > > > > > > > > > > > > > > > > > > Byrd > > > > > > > > > > > > > > > __________________________________________________________ > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > ________________________________ > > > > > From: <bluetaelon@> > > > > > > > > > > Sent: Tue, May 17, 2011 5:57:29 PM > > > > > Subject: Re: Teri Cerda > > > > > > > > > > > > > > > > > > > > I just saw that and was about to post as well, this is crazy. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > ________________________________ > > > > > From: S <RobRose@> > > > > > > > > > > Sent: Tue, May 17, 2011 2:56:08 PM > > > > > Subject: Teri Cerda > > > > > > > > > > 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 > > > > > > > > > > > > > > > > > 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, > > > > > > > > > > > > > > > > > > > > ------------------------------------ > > > > > > > > > > This forum is open to parents and caregivers of children diagnosed with a > > > > > Primary Immune Deficiency. Opinions or medical advice stated here are the > >sole > > > > > > > responsibility of the poster and should not be taken as professional advice. > > > > > > > > > > To unsubscribe -unsubscribegroups (DOT) > > > > > To search group archives go to: > > > > > /messages Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2011 Report Share Posted May 17, 2011 I will do that. Rule number one (until I can share what the attorney has to say) is do not piss off a doctor and think twice about filing a complaint at any medical facility. Most accusations start with something of that nature. > > > > > > > > > > I dont understand. Wouldn't she had to have had a diagnosis to get the > IVIG?? > > > > > > > > > > > > > > > > > > > > Byrd > > > > > > > > > > > > > > > __________________________________________________________ > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > ________________________________ > > > > > From: <bluetaelon@> > > > > > > > > > > Sent: Tue, May 17, 2011 5:57:29 PM > > > > > Subject: Re: Teri Cerda > > > > > > > > > > > > > > > > > > > > I just saw that and was about to post as well, this is crazy. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > ________________________________ > > > > > From: S <RobRose@> > > > > > > > > > > Sent: Tue, May 17, 2011 2:56:08 PM > > > > > Subject: Teri Cerda > > > > > > > > > > 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 > > > > > > > > > > > > > > > > > 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, > > > > > > > > > > > > > > > > > > > > ------------------------------------ > > > > > > > > > > This forum is open to parents and caregivers of children diagnosed with a > > > > > Primary Immune Deficiency. Opinions or medical advice stated here are the > >sole > > > > > > > responsibility of the poster and should not be taken as professional advice. > > > > > > > > > > To unsubscribe -unsubscribegroups (DOT) > > > > > To search group archives go to: > > > > > /messages Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2011 Report Share Posted May 17, 2011 I've posted on both articles in support of Terri. I've know her for years and I believe their diagnosis is solid. Each individual families idea of how much isolation should be taken on is a very personal decision. There have been times that I have questioned the extreme nature of a child being isolated or even been concerned that one is being exposed too much but that's my own idea and not one I ever felt I needed to share with the family. the main thing I mention is let your children start developing relationships with their doctors as soon as they can. Even if they can't completely articulate their symptoms try to let them handle the majority of the interview. Only if you think their treatment would be in danger by offering a different view point than your child should you intervene. A child remembers if the thermometer says 99 as opposed to 104. Even at 5 or 6 years old. But they can relay that to the doc and it isn't always " Mom says " in the clinic note. The child is feeling the symptom. Ursula mom to Macey (16,CVID) On Tue, May 17, 2011 at 7:07 PM, Sue Bordelon <sudubo@...> wrote: > > > That's cold-blooded......anyone can accuse anyone of anything, but accusing > a parent who cares about their children of hurting the children, must be > especially horrible....God Bless them.... > > > > > From: S <RobRose@...> > Subject: Re: Teri Cerda > > Date: Tuesday, May 17, 2011, 10:52 PM > > > > > I'm telling you it doesn't matter. In these cases, here is what you are up > against... > > States receive federal dollars for children placed in foster care -- there > is a $ incentive. On top of what they get, they no longer have to pay for > medical care (this family was on Medicaid at the time of the video) because > they claim the symptoms are fabricated. Yes, they will go as far as to claim > that labs are fabricated too -- I've heard it all. In 2 current cases in my > state, they are claiming that a total of 6 children with autism diagnoses > don't really have autism (this involves 2 separate families, BTW). The > State's expert testified that their autistic behaviors were caused by the > effect of having disturbed parents who pretend that their children are > disabled (ie: learned helplessness). In one case, the " expert " claimed that > an accused woman was able to cause herself to go into early labor in order > to cause prematurity in one of her babies. She was in the hospital, being > treated for preterm labor, when she was supposedly able to pull off this > stunt. These are psychologists testifying, yet they are treated as if they > have medical degrees. As far as PID, 4 kids currently in our state's care > were on IVIG for ID and also one had the further case of Henoch-Schonlein > Purpura. Their immunologist testified on their behalf. He was so upset by > this case, he had a heart attack after it was over. > > The other incentive is for the psychologists I have mentioned. A small > group of them in this country (15-20) have the desire to see MSBP listed in > the DSM as a stand-alone diagnosis. In order to achieve that, they must show > an increase in the amount of times it is diagnosed. These psychs are paid > well. One that is currently being investigated by our state's psych board > made $250K in part-time work diagnosing and testifying that parents have > MSBP. Her contract with the state makes it clear what is going on. An > attorney involved told me he has never seen such a contract before -- it > pretty much states that her job is to find that both the mothers and fathers > who are brought to her by CPS have MSBP. She has no problem with that as > this person has no soul. > > > > > > > > > > From: S <RobRose@...> > > > Subject: Teri Cerda > > > > > > Date: Tuesday, May 17, 2011, 9:56 PM > > > > > > > > > > > > > > > > > > > > > > > > Â > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > 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-ma\ keover-dubious-claims-edition > > > > > > 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 17, 2011 Report Share Posted May 17, 2011 I've posted on both articles in support of Terri. I've know her for years and I believe their diagnosis is solid. Each individual families idea of how much isolation should be taken on is a very personal decision. There have been times that I have questioned the extreme nature of a child being isolated or even been concerned that one is being exposed too much but that's my own idea and not one I ever felt I needed to share with the family. the main thing I mention is let your children start developing relationships with their doctors as soon as they can. Even if they can't completely articulate their symptoms try to let them handle the majority of the interview. Only if you think their treatment would be in danger by offering a different view point than your child should you intervene. A child remembers if the thermometer says 99 as opposed to 104. Even at 5 or 6 years old. But they can relay that to the doc and it isn't always " Mom says " in the clinic note. The child is feeling the symptom. Ursula mom to Macey (16,CVID) On Tue, May 17, 2011 at 7:07 PM, Sue Bordelon <sudubo@...> wrote: > > > That's cold-blooded......anyone can accuse anyone of anything, but accusing > a parent who cares about their children of hurting the children, must be > especially horrible....God Bless them.... > > > > > From: S <RobRose@...> > Subject: Re: Teri Cerda > > Date: Tuesday, May 17, 2011, 10:52 PM > > > > > I'm telling you it doesn't matter. In these cases, here is what you are up > against... > > States receive federal dollars for children placed in foster care -- there > is a $ incentive. On top of what they get, they no longer have to pay for > medical care (this family was on Medicaid at the time of the video) because > they claim the symptoms are fabricated. Yes, they will go as far as to claim > that labs are fabricated too -- I've heard it all. In 2 current cases in my > state, they are claiming that a total of 6 children with autism diagnoses > don't really have autism (this involves 2 separate families, BTW). The > State's expert testified that their autistic behaviors were caused by the > effect of having disturbed parents who pretend that their children are > disabled (ie: learned helplessness). In one case, the " expert " claimed that > an accused woman was able to cause herself to go into early labor in order > to cause prematurity in one of her babies. She was in the hospital, being > treated for preterm labor, when she was supposedly able to pull off this > stunt. These are psychologists testifying, yet they are treated as if they > have medical degrees. As far as PID, 4 kids currently in our state's care > were on IVIG for ID and also one had the further case of Henoch-Schonlein > Purpura. Their immunologist testified on their behalf. He was so upset by > this case, he had a heart attack after it was over. > > The other incentive is for the psychologists I have mentioned. A small > group of them in this country (15-20) have the desire to see MSBP listed in > the DSM as a stand-alone diagnosis. In order to achieve that, they must show > an increase in the amount of times it is diagnosed. These psychs are paid > well. One that is currently being investigated by our state's psych board > made $250K in part-time work diagnosing and testifying that parents have > MSBP. Her contract with the state makes it clear what is going on. An > attorney involved told me he has never seen such a contract before -- it > pretty much states that her job is to find that both the mothers and fathers > who are brought to her by CPS have MSBP. She has no problem with that as > this person has no soul. > > > > > > > > > > From: S <RobRose@...> > > > Subject: Teri Cerda > > > > > > Date: Tuesday, May 17, 2011, 9:56 PM > > > > > > > > > > > > > > > > > > > > > > > > Â > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > 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-ma\ keover-dubious-claims-edition > > > > > > 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 17, 2011 Report Share Posted May 17, 2011 This is a balanced article -- especially the second half. She had records/labs from prominent PID experts showing illness but it is quoted that those records were not accepted into evidence for court. The Judge has the authority to decide. Thanks for this, . http://www.oregonlive.com/clackamascounty/index.ssf/2011/05/clackamas_county_a_c\ ase_of_med.html Sent from my Sprint® BlackBerry ~~~~~~~~~~~~~~~~~~~~~~ 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-ma\ keover-dubious-claims-edition 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 17, 2011 Report Share Posted May 17, 2011 This is a balanced article -- especially the second half. She had records/labs from prominent PID experts showing illness but it is quoted that those records were not accepted into evidence for court. The Judge has the authority to decide. Thanks for this, . http://www.oregonlive.com/clackamascounty/index.ssf/2011/05/clackamas_county_a_c\ ase_of_med.html Sent from my Sprint® BlackBerry ~~~~~~~~~~~~~~~~~~~~~~ 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-ma\ keover-dubious-claims-edition 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 17, 2011 Report Share Posted May 17, 2011 Yes, but I would not make anything of the fact that her doctors would not testify on her behalf. At our children's hosp. the doctors are told that testifying in these cases could cost them their jobs (that gives them an " out " even of they get subpoenaed). It is a known fact by the attorneys in my state that doctors at that our hospital are not permitted to testify. > > 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-ma\ keover-dubious-claims-edition > > > 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 17, 2011 Report Share Posted May 17, 2011 Yes, but I would not make anything of the fact that her doctors would not testify on her behalf. At our children's hosp. the doctors are told that testifying in these cases could cost them their jobs (that gives them an " out " even of they get subpoenaed). It is a known fact by the attorneys in my state that doctors at that our hospital are not permitted to testify. > > 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-ma\ keover-dubious-claims-edition > > > 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 17, 2011 Report Share Posted May 17, 2011 That is just horrible! I've heard of false MSBP (and neglect!) accusations by dcf alot in the autism community. They have even tried to remove children because their parents refused to further vaccinate. I'm sure that's what Jade's old PCP thought of me before she was finally dx'd with CVID. He kept telling me that all the specialists and tests were unnecessary, even questioned the CVID dx, and cautioned us against IVIG, proclaiming it to be " controversial " . I have received nasty emails and comments on youtube accusing me of msbp, people proclaiming " there is nothing wrong with that baby " as if they can diagnose autism from a 30 second video clip of my daughter. I'll never forget my disappointment when the doctor didn't diagnose me with Munchausen's 5 years ago, instead she said " I have to agree with you Ms Bice, I will be diagnosing Jade with autism today " . If only people understood how badly we really wish the problems were ours, and not theirs. So sad to hear about this family going through this. > > 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-ma\ keover-dubious-claims-edition > 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 17, 2011 Report Share Posted May 17, 2011 That is just horrible! I've heard of false MSBP (and neglect!) accusations by dcf alot in the autism community. They have even tried to remove children because their parents refused to further vaccinate. I'm sure that's what Jade's old PCP thought of me before she was finally dx'd with CVID. He kept telling me that all the specialists and tests were unnecessary, even questioned the CVID dx, and cautioned us against IVIG, proclaiming it to be " controversial " . I have received nasty emails and comments on youtube accusing me of msbp, people proclaiming " there is nothing wrong with that baby " as if they can diagnose autism from a 30 second video clip of my daughter. I'll never forget my disappointment when the doctor didn't diagnose me with Munchausen's 5 years ago, instead she said " I have to agree with you Ms Bice, I will be diagnosing Jade with autism today " . If only people understood how badly we really wish the problems were ours, and not theirs. So sad to hear about this family going through this. > > 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-ma\ keover-dubious-claims-edition > 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 17, 2011 Report Share Posted May 17, 2011 In my opinion, she should do what the president did with his birth certificate.....She should go straight to the press and let them publish the abnormal lab results......since they would not allow that in court. 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-ma\ keover-dubious-claims-edition 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 17, 2011 Report Share Posted May 17, 2011 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 17, 2011 Report Share Posted May 17, 2011 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 17, 2011 Report Share Posted May 17, 2011 It was mentions at the *bottom* of an article heather posted (not the one) that the case was dropped. http://www.oregonlive.com/clackamascounty/index.ssf/2011/05/clackamas_county_a_c\ ase_of_med.html I'm quoting... " Within days of regaining custody of Maggie and Molly, Terri Cerda left Oregon and resumed treatment with the children's UCLA and Las Vegas doctors, child welfare workers in Oregon learned. The agency went back to the Clackamas County courthouse, arguing that Chuck Cerda did not believe his daughters were at risk from unnecessary medical intervention. Clackamas County Circuit Judge K. Van Dyk denied the state's request to take the children back. On April 4, child-protection workers tried again, and again Van Dyk denied the motion. " " Asked to submit them to The Oregonian for review, Terri Cerda released more than a dozen pages of letters, treatment recommendations and lab analyses. " As you can see, these docs are all stamped as 'exhibits,' " she wrote in an note accompanying the documents. " However, we were not permitted to enter them as evidence. " In a letter dated June 6, 2007, a pediatrician with the Geffen School of Medicine at UCLA, wrote: " Both children as well as their mother have Primary Immune Deficiency Disease. This disorder leaves them unable to mount a normal response to antigens and causes infections that are difficult to clear. Primary Immune Deficiency Disease is considered a life threatening medical condition. " The pediatrician reiterated his diagnosis in an April 14, 2008, letter documenting his prescription for a medical grade air filtration system: " Both of the Cerda children have Primary Immune Deficiency Disease, " he wrote. " The children are homebound as a result of their disorder. " Another physician, the medical director of the laboratory at Arkansas Children's Hospital in Little Rock, reviewed 2010 test results on both children. " Maggie and Molly Cerda have evidence supporting " Specific Polysaccharide Antibody Deficiency, " the director wrote. " Both may be at risk of autoimmune disorders. " Sent from my Sprint® BlackBerry ~~~~~~~~~~~~~~~~~~~~~~ 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 17, 2011 Report Share Posted May 17, 2011 " Dropped " means different things in different states, and I'm not sure what it means in their case. Criminal charges are often dropped, but the family remains " in the system, " which places the family in a precarious place. That same article specifically states ID as a potential red flag for MSBP... " Claims of immune deficiency arise a lot in Munchausen by proxy cases along with other ailments that are difficult to diagnose, " said Dr. Marc D. Feldman, a clinical professor of psychiatry at the University of Alabama, author of " Playing Sick? Untangling the Web of Munchausen Syndrome, Munchausen by Proxy, Malingering, and Factitious Disorder. " " Both children as well as their mother have Primary Immune Deficiency Disease. This disorder leaves them unable to mount a normal response to antigens and causes infections that are difficult to clear. Primary Immune Deficiency Disease is considered a life threatening medical condition. " > > The pediatrician reiterated his diagnosis in an April 14, 2008, letter documenting his prescription for a medical grade air filtration system: " Both of the Cerda children have Primary Immune Deficiency Disease, " he wrote. " The children are homebound as a result of their disorder. " > > Another physician, the medical director of the laboratory at Arkansas Children's Hospital in Little Rock, reviewed 2010 test results on both children. " Maggie and Molly Cerda have evidence supporting " Specific Polysaccharide Antibody Deficiency, " the director wrote. " Both may be at risk of autoimmune disorders. " > > Sent from my Sprint® BlackBerry > ~~~~~~~~~~~~~~~~~~~~~~ > > 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 17, 2011 Report Share Posted May 17, 2011 The SADDEST part about our system is that she would have had to PAY expert witnesses to testify for her. How could the family ever pay for the appropriate support they needed to clear things. Ursula is there any way to contact her to let her know of our wish to support her? It is such a fine line when we choose to do things against the " NORM " . IF we go against " the experts " it leaves parents with these kinds of charges. My sister lost her license as a midwife because she helped a family allow their SEVERELY disabled premature infant die at home rather than be resuscitated and abused at the NICU. This was a baby with severe genetic issues that were known prenatally she had NO possibility of having a quality of life without life long supports. They just wanted to have sacred time with the baby. She was brought up on charges that she was neglectful etc etc. She paid over $200k for expert witnesses from around the world and still lost. IT was so sad. She is an incredible midwife but no longer can practice. I am not saying this is easy but I struggle with doctors and the state having this level of power in these situations. BARBIE ________________________________ From: S <RobRose@...> Sent: Tue, May 17, 2011 5:51:36 PM Subject: Re: Teri Cerda Yes, but I would not make anything of the fact that her doctors would not testify on her behalf. At our children's hosp. the doctors are told that testifying in these cases could cost them their jobs (that gives them an " out " even of they get subpoenaed). It is a known fact by the attorneys in my state that doctors at that our hospital are not permitted to testify. > > 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 17, 2011 Report Share Posted May 17, 2011 The SADDEST part about our system is that she would have had to PAY expert witnesses to testify for her. How could the family ever pay for the appropriate support they needed to clear things. Ursula is there any way to contact her to let her know of our wish to support her? It is such a fine line when we choose to do things against the " NORM " . IF we go against " the experts " it leaves parents with these kinds of charges. My sister lost her license as a midwife because she helped a family allow their SEVERELY disabled premature infant die at home rather than be resuscitated and abused at the NICU. This was a baby with severe genetic issues that were known prenatally she had NO possibility of having a quality of life without life long supports. They just wanted to have sacred time with the baby. She was brought up on charges that she was neglectful etc etc. She paid over $200k for expert witnesses from around the world and still lost. IT was so sad. She is an incredible midwife but no longer can practice. I am not saying this is easy but I struggle with doctors and the state having this level of power in these situations. BARBIE ________________________________ From: S <RobRose@...> Sent: Tue, May 17, 2011 5:51:36 PM Subject: Re: Teri Cerda Yes, but I would not make anything of the fact that her doctors would not testify on her behalf. At our children's hosp. the doctors are told that testifying in these cases could cost them their jobs (that gives them an " out " even of they get subpoenaed). It is a known fact by the attorneys in my state that doctors at that our hospital are not permitted to testify. > > 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 17, 2011 Report Share Posted May 17, 2011 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 I am in contact with Terri and have been through this, as has at least one other member of this board.  We will make sure to let her know of the support she is getting on the board.  I'm sure it will mean a lot to her.    I will say this, it appears that the articles written have been very one sided.  I was not in the courtroom, but from what I've been told, multiple pieces of evidence were not allowed to be admitted into evidence. I can't comment much beyond that, as I feel strongly that what I've been told, I think should be held in the strongest of confidence. A word of warning about the media.  Often times, the story is very one sided.  I've not spoken a lot about this, but two years ago, our youngest son was briefly kidnapped while we were in Seattle.  We intentionally gave no interviews until after the case was over, and would only grant the interview with the understanding that our son's name never be used - we do not want him to be " googled " as " the kid that got kidnapped. "  Not only were the majority of the stories false, but they also had some gross misrepresentations.  Additionally, and maybe most importantly, the commenters were BRUTAL.  Luckily they've since been removed, but we had people calls us " the irresponsible parents from CA who don't deserve to have kids. "  we had people blame us in ways you would not believe.  A mentally ill, paranoid schizophrenic walked off with my son while he was standing inches from my husband, by his side, while we were momentarily distracted as he took a rock out of the bottom of my cast.  The comments left were horrendous.  Our kids deserved better parents, we didn't teach our kids safety rules (comical based on the way their lives revolve around safety rules based on illness alone).We live in a society that is quick to cast " blame " with limited facts - and in the day and age of being nameless and faceless on the internet, people say some brutal things.  That being said, please, know that the media presents the side than they want to.  While the media was sympathetic with us, so many of the facts presented were false.  Thank you to those who have offered Terri support, I'll let her know.  I'm sure each of us can imagine being in her place.  Dayna From: Barbara Jimenez <mother5590@...> Subject: Re: Re: Teri Cerda Date: Wednesday, May 18, 2011, 4:30 AM  The SADDEST part about our system is that she would have had to PAY expert witnesses to testify for her. How could the family ever pay for the appropriate support they needed to clear things. Ursula is there any way to contact her to let her know of our wish to support her? It is such a fine line when we choose to do things against the " NORM " . IF we go against " the experts " it leaves parents with these kinds of charges. My sister lost her license as a midwife because she helped a family allow their SEVERELY disabled premature infant die at home rather than be resuscitated and abused at the NICU. This was a baby with severe genetic issues that were known prenatally she had NO possibility of having a quality of life without life long supports. They just wanted to have sacred time with the baby. She was brought up on charges that she was neglectful etc etc. She paid over $200k for expert witnesses from around the world and still lost. IT was so sad. She is an incredible midwife but no longer can practice. I am not saying this is easy but I struggle with doctors and the state having this level of power in these situations. BARBIE ________________________________ From: S <RobRose@...> Sent: Tue, May 17, 2011 5:51:36 PM Subject: Re: Teri Cerda Yes, but I would not make anything of the fact that her doctors would not testify on her behalf. At our children's hosp. the doctors are told that testifying in these cases could cost them their jobs (that gives them an " out " even of they get subpoenaed). It is a known fact by the attorneys in my state that doctors at that our hospital are not permitted to testify. > > 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 18, 2011 Report Share Posted May 18, 2011 I have always gotten a copy of drs dictation from any specialist visit...I wonder how much that will change once everything goes electronic.....This seems like a damned if you do and damned if you dont situation....if you dont fight to get your child medical help they need, you neglect them...if you DO fight to get the medical help they need, you are crazy.. I had a dr back just before my boys were diagnosed who called me at home and said he couldnt make something be wrong with my kids just bc I needed attention....two weeks later we had firm diagnoses with a different dr, very clear cut diagnoses...its scary that if the first dr had chosen to, he could have reported his " suspicion " about me and my boys may never have had the care they needed. I have a friend whose teenage daughter had a baby recently. The baby has reflux. The baby throws up so much she is consistently losing weight...they keep going back to the dr who keeps telling them that babies cant take meds for reflux, just feed the baby (4 weeks old) cereal to cure it.....Im worried that if the baby keeps losing weight, they will blame the mom...but she is doing all she can, short of getting a new dr, its such a shame. I feel bad for teri and the girls. valarie > > > > > > > > > > > > > > I dont understand. Wouldn't she had to have had a diagnosis to get the > > IVIG?? > > > > > > > > > > > > > > > > > > > > > > > > > > > > Byrd > > > > > > > > > > > > > > > > > > > > > __________________________________________________________ > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > ________________________________ > > > > > > > From: <bluetaelon@> > > > > > > > > > > > > > > Sent: Tue, May 17, 2011 5:57:29 PM > > > > > > > Subject: Re: Teri Cerda > > > > > > > > > > > > > > > > > > > > > > > > > > > > I just saw that and was about to post as well, this is crazy. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > ________________________________ > > > > > > > From: S <RobRose@> > > > > > > > > > > > > > > Sent: Tue, May 17, 2011 2:56:08 PM > > > > > > > Subject: Teri Cerda > > > > > > > > > > > > > > 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 > > > > > > > > > > > > > > > > > > > > > > > > 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, > > > > > > > > > > > > > > > > > > > > > > > > > > > > ------------------------------------ > > > > > > > > > > > > > > This forum is open to parents and caregivers of children diagnosed with a > > > > > > > Primary Immune Deficiency. Opinions or medical advice stated here are the > > >sole > > > > > > > > > > responsibility of the poster and should not be taken as professional advice. > > > > > > > > > > > > > > To unsubscribe -unsubscribegroups (DOT) > > > > > > > To search group archives go to: > > > > > > > /messages Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2011 Report Share Posted May 18, 2011 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 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 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 The Story was VERY one sided but put up another one that told BOTH sides. Thank You Dayna BARBIE ________________________________ From: Dayna Fladhammer <dfladhammer@...> Sent: Wed, May 18, 2011 4:41:23 AM Subject: Re: Re: Teri Cerda I am in contact with Terri and have been through this, as has at least one other member of this board. We will make sure to let her know of the support she is getting on the board. I'm sure it will mean a lot to her. I will say this, it appears that the articles written have been very one sided. I was not in the courtroom, but from what I've been told, multiple pieces of evidence were not allowed to be admitted into evidence. I can't comment much beyond that, as I feel strongly that what I've been told, I think should be held in the strongest of confidence. A word of warning about the media. Often times, the story is very one sided. I've not spoken a lot about this, but two years ago, our youngest son was briefly kidnapped while we were in Seattle. We intentionally gave no interviews until after the case was over, and would only grant the interview with the understanding that our son's name never be used - we do not want him to be " googled " as " the kid that got kidnapped. " Not only were the majority of the stories false, but they also had some gross misrepresentations. Additionally, and maybe most importantly, the commenters were BRUTAL. Luckily they've since been removed, but we had people calls us " the irresponsible parents from CA who don't deserve to have kids. " we had people blame us in ways you would not believe. A mentally ill, paranoid schizophrenic walked off with my son while he was standing inches from my husband, by his side, while we were momentarily distracted as he took a rock out of the bottom of my cast. The comments left were horrendous. Our kids deserved better parents, we didn't teach our kids safety rules (comical based on the way their lives revolve around safety rules based on illness alone).We live in a society that is quick to cast " blame " with limited facts - and in the day and age of being nameless and faceless on the internet, people say some brutal things. That being said, please, know that the media presents the side than they want to. While the media was sympathetic with us, so many of the facts presented were false. Thank you to those who have offered Terri support, I'll let her know. I'm sure each of us can imagine being in her place. Dayna From: Barbara Jimenez <mother5590@...> Subject: Re: Re: Teri Cerda Date: Wednesday, May 18, 2011, 4:30 AM The SADDEST part about our system is that she would have had to PAY expert witnesses to testify for her. How could the family ever pay for the appropriate support they needed to clear things. Ursula is there any way to contact her to let her know of our wish to support her? It is such a fine line when we choose to do things against the " NORM " . IF we go against " the experts " it leaves parents with these kinds of charges. My sister lost her license as a midwife because she helped a family allow their SEVERELY disabled premature infant die at home rather than be resuscitated and abused at the NICU. This was a baby with severe genetic issues that were known prenatally she had NO possibility of having a quality of life without life long supports. They just wanted to have sacred time with the baby. She was brought up on charges that she was neglectful etc etc. She paid over $200k for expert witnesses from around the world and still lost. IT was so sad. She is an incredible midwife but no longer can practice. I am not saying this is easy but I struggle with doctors and the state having this level of power in these situations. BARBIE ________________________________ From: S <RobRose@...> Sent: Tue, May 17, 2011 5:51:36 PM Subject: Re: Teri Cerda Yes, but I would not make anything of the fact that her doctors would not testify on her behalf. At our children's hosp. the doctors are told that testifying in these cases could cost them their jobs (that gives them an " out " even of they get subpoenaed). It is a known fact by the attorneys in my state that doctors at that our hospital are not permitted to testify. > > 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...
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