mdmom Posted February 25, 2013 Report Share Posted February 25, 2013 It’s been a beautiful, soft, snowy day here in Maine, and my house is resting in the middle of a winter wonderland. But it is with a heavy heart that I tell you Boston Children's Hospital has snatched two more children from their medically attentive and appropriate parents. The hospital had them taken into the state's "emergency" custody because it does not agree with the children's diagnoses made by physicians at Tufts. This time it is Mitochondrial Disease. Both children - one five years old and the other fourteen - were under the care of a team at Tuft's Floating Hospital. The children are not related, but they share the same diagnosis and the same doctors. Both children were having GI issues. Both children went to BCH upon advice of their Tuft's physician who wanted the children seen by a GI doctor there. The children’s GI doctor had left Tufts for BCH with promises of a research team and money. Tuft's new GI team is not arriving until June 1st, and the children needed immediate help. The parents followed the advice of their Tufts physician and brought their children to the BCH emergency room. The GI doctor was not permitted to see either child. The families were told he was being kept at arm's length because others within Children's do not agree with the diagnosis. The five years old's mother was essentially accused of Munchausen's by Proxy. The fourteen year old's family was told it's all psychological, that the girl has anorexia, and that she belongs in the locked psych unit. All of the fourteen year old's medication was stopped. The parents are permitted to visit their child for one hour, once a week, supervised by BCH staff. Guards were called to surround the family and friends and remove them from the hospital. Non-family members witnessed the fourteen year old's abduction...the parents were not even permitted to say goodbye. Meetings were held this past week with U.S. Congressman Stephen Lynch's office regarding the situation at BCH. His office has taken an interest in the fact that a hospital in his district is causing the parents of very sick children, who seek help in good faith, to lose custody of their children. Attached is a list of the towns in Congressman Lynch's district. If you live within one of these towns, will you please contact his office to share your own BCH horror story. The number is 617-428-2000. I know many of you are terrified to speak up because of the threat of BCH/DCF, but unless you begin to speak out publicly this travesty will not stop. When powerful institutions secretly collaborate and then act without public accountability the result is always abuse. Do NOT go to Boston Children's. You have no civil rights once you do. You are not entitled to a second opinion. If you challenge their opinion or seek to take your child to a different hospital, you risk that Children's will have your child taken by DCF. I cannot overemphasize the seriousness of the situation at BCH. No child, ever, should be taken there for ANY reason. If you have managed to escape from BCH with your child, I recommend that you immediately notify the hospital in writing that you withdraw any consents you signed when your child was admitted. This is not legal advice. I am simply telling you what I, as a parent, would do for my own child - knowing what I know now. Generally, those medical consents remain outstanding for at least six months, often longer, and enable BCH to continue to probe all of your child's providers, teachers, and so forth for months. Believe me: they do it long after you've left the hospital. Do you want BCH in your life after you leave? If not, send your letter to Stuart Novick, the hospital's general counsel informing him in writing that any and all consents you signed are hereby immediately revoked and void. Make sure the letter states your child's name and date of birth and that you are the child's parent or legal guardian. Keep a copy. Give one to your child's providers. If BCH then continues to try to get information, it will be a HIPAA violation. For those of you who have already lost custody, I would immediately notify the child's DCF social worker in writing, with a copy to the hospital's general counsel, that your child is not to be a participant in any medical or psychological research. You do have that right even when the state has custody. Write that your notice is being delivered pursuant to 110: CMR Department of Children and Families § 11:23. Make certain you keep a copy. I thank God every day that we never made it to that place when Sammy was desperately ill. I believe in my heart they would have taken him from me. I am asking the thousands of people on this email blast list to please tell everyone you know to stay away from BCH unless they are willing to risk losing their child. We have succeeded in stopping PANDAS parents from going there. We need to cast a wider net. I can only imagine how extensive this problem is because - obviously - not every child's parent who is in this situation manages to reach me. Link to comment Share on other sites More sharing options...
peglem Posted February 25, 2013 Report Share Posted February 25, 2013 Is there a place where all the horror stories are being collected? I have a friend who was terrorized by them when her NT child fell and broke her arm. They did finally release her child back into her custody, but probably would not have if it had been her special needs child. Anyway, she is still traumatized by this, after several years and would like to contribute her story if it would help. Link to comment Share on other sites More sharing options...
MamaOnAMission Posted February 25, 2013 Report Share Posted February 25, 2013 What can we do to help if we DON'T live in the towns you listed? Link to comment Share on other sites More sharing options...
Hopeny Posted February 25, 2013 Report Share Posted February 25, 2013 This is a supreme abuse of power, the government needs to intervene. I am wondering if the medical review boards have been notified? complaints filed? what about contacting human rights organizations? organizations for protection of children? child abduction organizations? I must say, these people are so silly, they jump to Munchausen by proxy as a diagnosis which is extremely, extremely rare and discount other illnesses which are exceedingly more common! Link to comment Share on other sites More sharing options...
ChrissyD Posted February 25, 2013 Report Share Posted February 25, 2013 I posted this elsewhere but found it important enough to share. While reading up on BCH I found this lawyer's blog. I think it's important to all have our eyes open when accessing care for our children. http://jmilaw.net/blog/?p=70 Link to comment Share on other sites More sharing options...
nicklemama Posted February 26, 2013 Report Share Posted February 26, 2013 I think a news reporter with an excellent reputation should get on this and see just how many children's parent are being reported to CPS at BCH. This might turn into a big story. Link to comment Share on other sites More sharing options...
airial95 Posted February 26, 2013 Report Share Posted February 26, 2013 Bored at work this afternoon - I also decided to search for other publicized cases regarding BCH - and found this: It seems BCH's MO is to have uniformed guards play thug for them Link to comment Share on other sites More sharing options...
nicklemama Posted February 27, 2013 Report Share Posted February 27, 2013 Sickening. Link to comment Share on other sites More sharing options...
SurfMom Posted March 1, 2013 Report Share Posted March 1, 2013 Thank you for this information. I am bumping it to ensure it is on everyone's radar. Link to comment Share on other sites More sharing options...
nicklemama Posted March 1, 2013 Report Share Posted March 1, 2013 I hope they blow BCH wide open and expose them. I have no knowledge of anyone actually working on a story. I'm just a lowly parent in MI hoping someone takes the reins and does something. Link to comment Share on other sites More sharing options...
ajcire Posted March 1, 2013 Report Share Posted March 1, 2013 I'm so naive I don't even understand how these things can happen. I can not even imagine. Link to comment Share on other sites More sharing options...
philamom Posted March 5, 2013 Report Share Posted March 5, 2013 I'm so naive I don't even understand how these things can happen. I can not even imagine. Same here. This is so sad and so very scary! It breaks my heart. Link to comment Share on other sites More sharing options...
Allie Posted March 14, 2013 Report Share Posted March 14, 2013 If this is happening at any hospital you need to file an OCR complaint. Anyone can file one against any hospital, clinic, school, college that receives federal funds. Its no cost to you to file this. Here is the information how to do this below. ( I have been trying to get the word out about this all week regarding another issues with a child being in restraints in a hospital for 3 weeks because he has gut issues and autism and the hospital refuses to treat him! ) How to file an OCR report : http://www.hhs.gov/ocr/office/file/index.html I also want to add another agency that should be contacted is the Joint Commission hospitals have to be accredited through the Joint commission and must meet certain standards, they can loose accredation if they do not live up to the guidelines. Anyway, its important that you also file a complaint to this agency as well. http://www.jointcommission.org/standards_information/npsgs.aspx The more people who file the better when there are serious issues, as it will draw attention to a serious problem. ** and please do not do this because you got ticked off with one nurse, and it was something that was resolved. I'm so naive I don't even understand how these things can happen. I can not even imagine. Same here. This is so sad and so very scary! It breaks my heart. Link to comment Share on other sites More sharing options...
pr40 Posted March 14, 2013 Report Share Posted March 14, 2013 allie: could you please explain how we can file a complaint? OCR protects against discrimination. how can I connect poor treatment or wrong diagnosis my child got at CH to it? (my dd9 was actually treated there by a neurologist who put her on nurontin, if I remember that correctly.) Link to comment Share on other sites More sharing options...
Allie Posted March 17, 2013 Report Share Posted March 17, 2013 PR40 Have you looked at the links I provided above? Here's the direct pages or you can call them and they will send you a packet.http: //www.hhs.gov/ocr/civilrights/complaints/discrimhowtofile.pdf I really think from what you mentioned, it sounds like you need to file a complaint against the DR, go to the Medical board in your state. If there is more than that, your child was discriminated or maltreatments, refused treatment, than OCR below is your next step. The other thing is it must be filed within 180 days since the event - leaving the hospital, or DR's office. Also check out which region your in, each region seems to cover 4-10 states - so you need to contact your regional OCR office. Regional Office Addresses Region I - Boston (Connecticut, Maine, Massachusetts, New Hampshire, Rhode Island, Vermont) Peter Chan, Regional Manager Office for Civil Rights U.S. Department of Health and Human Services Government Center J.F.Kennedy Federal Building - Room 1875 Boston, MA 02203 Voice phone (800) 368-1019 FAX (617) 565-3809 TDD (800) 537-7697 Region II - New York (New Jersey, New York, Puerto Rico, Virgin Islands) Linda Colon, Regional Manager Office for Civil Rights U.S. Department of Health and Human Services Jacob Javits Federal Building 26 Federal Plaza - Suite 3312 New York, NY 10278 Voice Phone (800) 368-1019 FAX (212) 264-3039 TDD (800) 537-7697 Region III - Philadelphia (Delaware, District of Columbia, Maryland, Pennsylvania, Virginia, West Virginia) Barbara Holland, Regional Manager Office for Civil Rights U.S. Department of Health and Human Services 150 S. Independence Mall West Suite 372, Public Ledger Building Philadelphia, PA 19106-9111 Main Line (800) 368-1019 FAX (215) 861-4431 TDD (800) 537-7697 Region IV - Atlanta (Alabama, Florida, Georgia, Kentucky, Mississippi, North Carolina, South Carolina, Tennessee) Roosevelt Freeman, Regional Manager Office for Civil Rights U.S. Department of Health and Human Services Sam Nunn Atlanta Federal Center, Suite 16T70 61 Forsyth Street, S.W. Atlanta, GA 30303-8909 Voice Phone (800) 368-1019 FAX (404) 562-7881 TDD (800) 537-7697 Region V - Chicago (Illinois, Indiana, Michigan, Minnesota, Ohio, Wisconsin) Celeste Davis, Regional Manager Office for Civil Rights U.S. Department of Health and Human Services 233 N. Michigan Ave., Suite 240 Chicago, IL 60601 Voice Phone (800) 368-1019 FAX (312) 886-1807 TDD (800) 537-7697 Region VI - Dallas (Arkansas, Louisiana, New Mexico, Oklahoma, Texas) Jorge Lozano, Regional Manager Office for Civil Rights U.S. Department of Health and Human Services 1301 Young Street, Suite 1169 Dallas, TX 75202 Voice Phone (800) 368-1019 FAX (214) 767-0432 TDD (800) 537-7697 Region VII - Kansas City (Iowa, Kansas, Missouri, Nebraska) Frank Campbell, Regional Manager Office for Civil Rights U.S. Department of Health and Human Services 601 East 12th Street - Room 353 Kansas City, MO 64106 Voice Phone (800) 368-1019 FAX (816) 426-3686 TDD (800) 537-7697 Region VIII - Denver (Colorado, Montana, North Dakota, South Dakota, Utah, Wyoming) Velveta Howell, Regional Manager Office for Civil Rights U.S. Department of Health and Human Services 999 18th Street, Suite 417 Denver, CO 80202 Voice Phone (800) 368-1019 FAX (303) 844-2025 TDD (800) 537-7697 Region IX - San Francisco (American Samoa, Arizona, California, Guam, Hawaii, Nevada) Michael Leoz, Regional Manager Office for Civil Rights U.S. Department of Health and Human Services 90 7th Street, Suite 4-100 San Francisco, CA 94103 Voice Phone (800) 368-1019 FAX (415) 437-8329 TDD (800) 537-7697 Region X - Seattle (Alaska, Idaho, Oregon, Washington) Linda Yuu Connor, Regional Manager Office for Civil Rights U.S. Department of Health and Human Services 2201 Sixth Avenue - M/S: RX-11 Seattle, WA 98121-1831 Voice Phone (800) 368-1019 FAX (206) 615-2297 TDD (800) 537-7697 Link to comment Share on other sites More sharing options...
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