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Shocking Story #2


concerned-mom061

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concerned-mom061 Rookie

Hello! While in the process of looking for some much needed information I came across a story titled, "Shocking Story". I read the story and found that it was not very different from my own. People may not believe that what she told you in her story and what I am about to tell you is true, but it is......and we are just 2 out of thousands that can tell the same story. I had a little girl almost a year ago that was 7 weeks early. Initially, she did okay, but was really small and fragile. By 19 days old she was hospitalized and found to have severe GERD. At six weeks old she had a nissan-fundoplication and a g-tube placement performed. We stayed in the hospital for 4 months before we were allowed to bring her home. My baby weighed a measly 8 pounds when she was 4 months old. She started progressing and done well for a couple of months despite regular episodes of diarreha and constipation, stomach aches, spitting up, ear infections, and contant colds. She started gaining weight, and developed really well physically and mentally. Her diet consisted of Neocate and oatmeal cereal.

At the age of 8 months we started her on baby food. She then developed a case of diarreha that would not go away. We stayed in and out of the hospital due to dehydration caused by the runny stools and her developed ability to vomit. We battled this for 2 months and in the process my little baby girl lost 4 pounds and became very ill. She stopped playing, eating, walking.......all she did was sleep and cry. We went to a bigger hospital when she turned 10 months old, and stayed there for 3 weeks. In the process, she had a biopsy done from an endoscopy and numerous other tests preformed. They put her back on TPN to feed her through her veins and placed a broviac, which became infected 2 days later. All of her blood tests came back pointing at Celiac as the source of her problems. She had to have a blood transfusion while we were there since she didn't respond to the iron treatment. That transfusion made 5 that my little baby has had since she was born. Then the biopsy came back showing the villi in her stomach as non-existent, gastritis, and other inflammation. The GI doctor said it looked like Celiac. Her IGG tests also came back favorable for Celiac. She also had this terrible rash on her bottom that had been there for 1 month that even the dermatologist could not identify, and it did not respond to any type of treatment.

The GI doctor decided to put in a GJ tube to feed her through. However, the tube was put in a size too small and was only filled w/2 ccs of water. The tube rotated constantly, which posed a big threat since it was in her small bowel and could cause it to rupture. We had to keep a bandage over it to keep it in place. The tube came out one night while we were sleeping. She was on a continuous feed and the tube caught and pulled out. 4 days later I was taken by complete surprise when I was told to bring my baby back into the hospital room by the doctor and nurse who had not come into the room all day. They had me lay my baby on the bed, then unhooked her from everything and cornered me w/police officers and other staff as some lady I did not know grabbed my baby girl and ran out of the room. I was told I was to immediately leave the hospital and not return.....that the state now had custody. I was not given anymore information than that.

I found out 3 days later that I was being accused of Munchausen By Proxy by someone...though there was no physical evidence. It's been 1 month since my baby was taken from me, and it's been so hard. I have the support of my family, friends, church, my baby's pediatrician, and the doctors that did my daughter's surgery. However, CPS has made me out to be a monster, and has kept my baby in their care. They won't let anyone in my family have her. We go back to court on Friday, and I will hopefully get my baby back. I have seen her sveral times since her removal, and she has not improved much. If I had Munchausen, then she would have improved in every way after she was removed from my care. Now my daughter is out there somewhere not recieving the proper care or diet for what is wrong w/her. It has been a hard battle. What has happened to me has happened to so many others. We are all part of a modern day witch hunt. Any mother that cares about her child and does everything she can to protect her baby meets the criteria for this so called MSBP. It's scary what CPS can get away with. If anyone on here has any advice......please let me know!!! I want my baby back more than anything. Thankfully, they have let my little brothers, whom I have custody of, in my care. I am fortunate when it comes to that. Please, listen to my story and the other story that was told and take heed to what was told.

God Bless You All

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CarlaB Enthusiast

I homeschooled for 10 years, and when I started it was not as popular as it is today. This was very well-known in the home school community as it happened frequently to home schoolers. Now there is the Home School Legal Defense Fund (HSLDA), which was started for this and other problems home schoolers face. If you're a home schooler, I encourage you to join as it's like insurance in case you end up in a lawsuit with the CPS or the state about your rights to teach your children.

I'm sorry for you. It's really unbelievable that you are guilty until proven innocent. It's a system designed to help children in extreme situations, but is often abused.

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mommida Enthusiast

When my daughter was first diagnosed, we were told to buy a book, come to this website, and find a support group. (The hospital dietician cancelled the appointment we had and said that was all she could suggest for us.) The book, Danna Korn's Kids with Celiac, had a paragraph on a child that was taken from the parent's custody, put into foster care, and after two years was diagnosed with Celiac Disease.

We have got to get the information about Celiac Disease and gluten intolerance out there. If it were one of the first things doctors screened for, not one of the last, so many could be saved years of suffering. The new statistics of 1 in 133 clearly show early screening (with accurate test results) is needed.

Montel Williams has addressed this topic and may be able to help you.

My thoughts and prayers are with you.

L.

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penguin Community Regular

I don't have anything to say except that I'm very sorry for your situation. I hope you can get your baby back before she gets any worse. It seems like the MSBP accusation is sometimes made when the dr's do something wrong to lay the blame elsewhere.

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Luvs to Scrap Apprentice

I will add your situation to my prayer list too. It is just scary how someone who loves and cares for their baby can get them taken away by false accusations. Take care! Kendra

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Gcbec Newbie

My new dear friend,

I hope these wonderful people here will help and support you as they have done for me. I am praying for you and your babygirl that she will be home soon. I suppose it is so hard for people to really understand how things like this can happen. But the reality of the matter is, this is another example of how this can happen to anyone at anytime, and the fact that is has happened to 2 mothers now with celiac children how many more are out there, how many more families are being torn apart because no one can or knows how to diagnose celiac. The question is how can you get accross to the court system what the dr has ignored, that your daughter has celiac disease and needs medical care.

Again, you know I am there for you. You are in my prayers

CIndy

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Guest Mtndog

These stories absolutely blow my mind. I am praying for all of you and the health and safety of your children, B

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Guest Robbin

These stories are scaring the living daylights out of me. I am afraid to take my kid to the doctor--the doctor I take him to is already skeptical of everything I say to him. I am praying for you as well.

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kirst4588 Apprentice

I believe you and pray for you. I was accused of maunchasun syndrome by my exhusband and his mother during a custody battle. My son has celiac disease. It was only the grace of God that saved my son. Please keep us updated.

If you don't mind me saying - I promise this works - when you are ready, you fall to your knees. reach up to God and surrender. Give this situation and your daughter for him "God I know that only You know what is best, Your will be done"

The day after I did that -- my X signed over his rights!

I am so so sorry for this nightmare, I am covered in goosebumps writing to you. Be strong.

Hello! While in the process of looking for some much needed information I came across a story titled, "Shocking Story". I read the story and found that it was not very different from my own. People may not believe that what she told you in her story and what I am about to tell you is true, but it is......and we are just 2 out of thousands that can tell the same story. I had a little girl almost a year ago that was 7 weeks early. Initially, she did okay, but was really small and fragile. By 19 days old she was hospitalized and found to have severe GERD. At six weeks old she had a nissan-fundoplication and a g-tube placement performed. We stayed in the hospital for 4 months before we were allowed to bring her home. My baby weighed a measly 8 pounds when she was 4 months old. She started progressing and done well for a couple of months despite regular episodes of diarreha and constipation, stomach aches, spitting up, ear infections, and contant colds. She started gaining weight, and developed really well physically and mentally. Her diet consisted of Neocate and oatmeal cereal.

At the age of 8 months we started her on baby food. She then developed a case of diarreha that would not go away. We stayed in and out of the hospital due to dehydration caused by the runny stools and her developed ability to vomit. We battled this for 2 months and in the process my little baby girl lost 4 pounds and became very ill. She stopped playing, eating, walking.......all she did was sleep and cry. We went to a bigger hospital when she turned 10 months old, and stayed there for 3 weeks. In the process, she had a biopsy done from an endoscopy and numerous other tests preformed. They put her back on TPN to feed her through her veins and placed a broviac, which became infected 2 days later. All of her blood tests came back pointing at Celiac as the source of her problems. She had to have a blood transfusion while we were there since she didn't respond to the iron treatment. That transfusion made 5 that my little baby has had since she was born. Then the biopsy came back showing the villi in her stomach as non-existent, gastritis, and other inflammation. The GI doctor said it looked like Celiac. Her IGG tests also came back favorable for Celiac. She also had this terrible rash on her bottom that had been there for 1 month that even the dermatologist could not identify, and it did not respond to any type of treatment.

The GI doctor decided to put in a GJ tube to feed her through. However, the tube was put in a size too small and was only filled w/2 ccs of water. The tube rotated constantly, which posed a big threat since it was in her small bowel and could cause it to rupture. We had to keep a bandage over it to keep it in place. The tube came out one night while we were sleeping. She was on a continuous feed and the tube caught and pulled out. 4 days later I was taken by complete surprise when I was told to bring my baby back into the hospital room by the doctor and nurse who had not come into the room all day. They had me lay my baby on the bed, then unhooked her from everything and cornered me w/police officers and other staff as some lady I did not know grabbed my baby girl and ran out of the room. I was told I was to immediately leave the hospital and not return.....that the state now had custody. I was not given anymore information than that.

I found out 3 days later that I was being accused of Munchausen By Proxy by someone...though there was no physical evidence. It's been 1 month since my baby was taken from me, and it's been so hard. I have the support of my family, friends, church, my baby's pediatrician, and the doctors that did my daughter's surgery. However, CPS has made me out to be a monster, and has kept my baby in their care. They won't let anyone in my family have her. We go back to court on Friday, and I will hopefully get my baby back. I have seen her sveral times since her removal, and she has not improved much. If I had Munchausen, then she would have improved in every way after she was removed from my care. Now my daughter is out there somewhere not recieving the proper care or diet for what is wrong w/her. It has been a hard battle. What has happened to me has happened to so many others. We are all part of a modern day witch hunt. Any mother that cares about her child and does everything she can to protect her baby meets the criteria for this so called MSBP. It's scary what CPS can get away with. If anyone on here has any advice......please let me know!!! I want my baby back more than anything. Thankfully, they have let my little brothers, whom I have custody of, in my care. I am fortunate when it comes to that. Please, listen to my story and the other story that was told and take heed to what was told.

God Bless You All

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Guest nini

I am so sorry this is happening to you as well. I agree that we have GOT to get awareness into the media about Celiac and the things it does to our babies and then maybe just maybe these ignorant cruel egomaniacal Dr.s will stop being able to accuse loving mother's of a rare mental disorder. When one of my daughter's doctors threatened me with it before her dx, I was so scared and shocked that they could accuse me of THAT when I was just trying to find out why my child was so ill. When she was 3, I was finally dx'ed with Celiac and then after inconclusive (negative according to Dr.s) testing said she didn't have it, I got her pediatrician to agree to support me with trying the diet. Not doing more tests or any surgeries and lo and behold my daughter is now a healthy six year old. I shudder to think what would have happened if the Dr. that accused me of MSBP had pursued that course of action. I pray for your family that you can get the help you need to get this atrocity resolved post haste. This is ridiculous that they can get away with accusing mothers of this without any proof.

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concerned-mom061 Rookie

Yes...it is scary, and it's sad.....but it happens every day. I'm fortunate in my case, for I get to see my daughter twice a week, and my court day has been rushed. There are parents out there that have been away from their kids for months, the other mom on here being one of them, and they don't get to see their children at all. They have to sti in agony waiting for their court date that is many more months away.

Just be careful what you say and do, and document everything!!! Every doctor's appointment, every test and procedure, every bad day your child has, every medication he or she is on, every doctor and hospital your child has been to, and make the doctors take claim for what they say and do. If a doctor requests a test be done, have him write a letter explaing the test and why he feels it's necessary. Do the same for every hospital transfer, and make sure all of your child's doctor's visits are scheduled appointments.

Don't be afraid to get your child the necessary medical treatment he or she needs, though I know after hearing this story that may be hard to do. Just make sure you cover your grounds. Our children depend on us to take care of them and speak for them when they can't speak for themselves. If we don't stand up for them, who is going to? No one knows our children or loves them like we do!

So all you parents out there that care......good for you!! You all keep doing what you are doing and loving your children! I will make it through this, and I will get my baby back!

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gfp Enthusiast
I homeschooled for 10 years, and when I started it was not as popular as it is today. This was very well-known in the home school community as it happened frequently to home schoolers. Now there is the Home School Legal Defense Fund (HSLDA), which was started for this and other problems home schoolers face. If you're a home schooler, I encourage you to join as it's like insurance in case you end up in a lawsuit with the CPS or the state about your rights to teach your children.

I'm sorry for you. It's really unbelievable that you are guilty until proven innocent. It's a system designed to help children in extreme situations, but is often abused.

Even in the absense of a specific defense fund you must be able to find some legal aid to help you through this.

I really suggest turning your energy towards finding a lawyer with experience in MSBP...

This is probably down to a single person.... who has then convinced the others ...

Your lawyer will probably want to hire a PI to dig up dirt on this person.... so if you know who it is that would help.

Also Dr.s who habitually cover thier own mistakes by blaming parents do this to others.... you need to find other mothers from the same person and prove a pattern.

Forget all the "nambie pambie" stuff about being nice.... you need to go for this persons juglar. If they lose their job and whatever that is not your concern. Be prepared to do ANYTHING .... Your lawyer will also tell you this I imagine. You have to HURT this person so bad they will break down and see that there way of life is threatened. They may well be mentally ill themselves!

When I was 12-13 I was sent to child psychologists who spent several weeks trying to get me to say "My father touched me" it was a huge fashion at the time in the UK... thousands of kids were taken from parents and put into care homes to be abused by the carers.

I waited and I found her weakeness. Then I destroyed her ... until she was a quivering heap on the floor. She was mentally ill (my diagnosis) and had missed any and all contact with her father who had never touched her even to give her a hug or even to give her money.

Anyway... I was sent back to school, told never to go back and later told she had quit her job.

I was meant to feel guilty about this....????

I don't feel guilty, if she had commited suicide that night (and beleive me I suggested a few ways to her when she was weeping on the floor) I would not feel guitly because she was a bitter nasty person trying to seperate kids from their parents because of her own mental health issues.

I rather hope she was commited and never works again!

Screw this person.... they are not interested in the child... if they were they would have put the child into intensive care and not allowed any non medical staff access. What they did was let you take her home and then start the MSBP.proceedings.. this is not normal behaviour.... they have a problem ...you need to find it and exploit it!

If this sounds tough.. it is... they are playing with a dangeous thing ....

About 4 yrs ago in Norway a mother failed an IQ test and had her children taken away by the state.

In all respects she was actually above average intellegence (as attested by her GP, school and academic achievments), she just didn't put much effort into the test and was distracted... as i remember by her kids... and worrying about one of them at school or something.

Do whatever you must....

Another thing you need to be aware of is the CPS will try and convince you that maybe you did it....

They can be VERY convincing... they will suggest scenarios and say they understand.... they will say that you thought you were doing the best for your baby but ....

Do not attend any questioning without a lawyer.... !!!

Don't try and appear helpful.... it won't help.

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Canadian Karen Community Regular

It absolutely defies logic as to why these doctors are much more open to the idea of the mother having this extremely rare mental disorder RATHER than the child having a disease that affects 1 in 133.

I think gfp is onto something. Perhaps the hospital is trying to cover their tracks because they thought they were going to be sued for doing a poor job with the tube?

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chrissy Collaborator

gfp----you've GOT to tell us more of this story------you've only teased us! (but on another thread so as not to hijack this one) i think alot of people might be helped by how you were able to figure the woman out.

i think documenting everything and getting copies of any and all medical records is a really good idea.

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mommida Enthusiast

Please make formal complaints about these "doctors"!

L.

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Gcbec Newbie

Unfortunatly Dr's have immunity so there is nothing anyone can do. Especially since they have our kids.

Please make formal complaints about these "doctors"!

L.

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ravenwoodglass Mentor

All I can say is that you are in my prayers.

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Nancym Enthusiast

I've seen this time and again on Mystery Diagnosis. Some Mom with a sick kid get accused of this and it turns out it was the Dr's incompetence.

Here's an organization that helps people dealing with this: Open Original Shared Link

M.A.M.A. was begun in response to the fast growing number of false allegations of Munchausen Syndrome by Proxy (MSBP). Parents are being accused of making their own children ill. Increasingly, families across America, Britain, Australia, Canada and New Zealand are being destroyed by doctors and other professionals who make false and even malicious allegations against desperate mothers of chronically/critically ill children.

The inventor of this label/diagnosis, Sir Roy Meadow, has now been completely discredited in the UK courts and there is a tremendous public outcry for review of all cases in which he has ever been involved. (For more information see Published Articles) We believe there should be a review of all cases world-wide in which MSP label has been used.

The motives of the accusers can be multi-faceted. Often, allegations are used by a doctor or institution to evade a medical malpractice lawsuit, or to simply rid themselves of a troublesome mom when frustrated and unable to diagnose a child's condition. Increasingly, this label is being deliberately misused by opposing parents in child custody suits. Many nurses and even doctors have been accused. SIDS deaths are the new frontier of prosecution.

I think this might be a MD mental disorder. One doctor did this to 6 different families.

Open Original Shared Link

FALSE ACCUSATIONS OF

MUNCHAUSEN SYNDROME

presented by Dr Helen Hayward-Brown.

Based in Australia I completed my doctoral research in the social sciences (interdisciplinary: sociology, anthropology, psychology) on the subject of false accusations of Munchausen Syndrome by Proxy (MSBP). Accusations of MSBP have increased in the last ten years and many mothers are being falsely accused. Many of these accusations may occur after mothers make complaints about treatment, when children suffer side-effects from drugs, or when ex-husbands are accused of sexually abusing their children. Common patterns in these cases are fabrication of evidence against mothers, the tampering of files, inaccurate files or mixing of files with other children, and bad faith allegations following parental complaints.

If you would like further information or contact, please contact me on my email address: * heleneli@pnc.com.au

Open Original Shared Link

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GFBetsy Rookie

Nancym -

That Seattle PI article was enlightening (for lack of a better word . . . great/wonderful doesn't seem appropriate on such a serious subject). Thanks for the link.

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Guest nini
Bateman's case illustrates the dangers of "profiling" parents, experts said. Parents of very sick children, young or anxious parents, or those who advocate aggressively for their children all "fit" the profile of people suffering from Munchausen by proxy.

this is just so disturbing to me...

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gfp Enthusiast
gfp----you've GOT to tell us more of this story------you've only teased us! (but on another thread so as not to hijack this one) i think alot of people might be helped by how you were able to figure the woman out.

I'm afraid its only a short answer..(not worth a thread)...I guess its a knack. On second thoughts...I might try and explain...

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CarlaB Enthusiast
I'm afraid its only a short answer..(not worth a thread)...I guess its a knack. On second thoughts...I might try and explain...

Oh, c'mon, since when are you worried about giving the long answer!!?? :lol:

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gfp Enthusiast
Oh, c'mon, since when are you worried about giving the long answer!!?? :lol:

Open Original Shared Link

you win, hope I don't regret this...

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TCA Contributor

As a parent of a very ill child, my heart goes out to you. You and your daughter will be in my prayers.

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kalanfan Explorer

your story makes me feel sick....im a nursing student that plans to go into neonatal or pediatric medicine......i know its little comfort to you but i hope that i can help stop this kind of thing from happening in some way.....i tell you though...when i come in contact with sick children like yours....celiacs is gonna be one of the first things on my mind to rule out....

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