Shocking Story

[Gcbec]

Hello,

My name is CIndy and last August I was diagnosed with Celiac disease. At the time I didnt think much about it but looking back I should have done alot of things differntly. I am a mom of 2 children 9 and 6. Last year while I was being diagnosed with Celiac my son began having difficulties as well, and he had problems since birth with severe reflux, diahreah, apnea. When he was 9 months old he ended up with g-tube and nissen fundo. He did well we moved and eventually he no longer required the g-tube. LAst year things were not looking right, he was placed on adderall becasue they claimed he has adhd. He began with headaches weight loss and fevers and continuous stomache aches and large bowl movements he was tired all the time and didnt even want to participate in sports anymore. We took him to dr, who sent us to another dr who sent us to another dr. One dr did endoscopy and said he didnt think it was celiac but showed lots of imflamation. In January we went to imunologist, we were told he had FMF a genetic disorder, then we were sent to a pediatrician to help with his care. This pediatrician came to the conclusion that I was lying and my son was not sick and had my children removed from there loving, safe home. This was June 10th, we recieved records last week from immunologist, in there it shows My son had positive IGG for Celiac 3 times the normal level. Since my son has been gone, they stopped adderall which has stopped him from having headhaches and (stated in side effects) fever, he has increased his pooping, it has been described as ALL OVER the bathroom and clothes with very bad smell. This was after he ate Pasta dinner and my parents were present. I spoke to Celiac disease center at COlumbia University Hospital, and they told me there is very few hospitals that give accurate diagnosis of Celiac, and based on blood test they would be sure my son has this. My question to everyone here, is if you were told child didnt have Celiac, and you have it, would you make sure the proper diagnosis be done? Is there anyone that has been to Center at COlumbia University in NY? Is there anyone that has ever been in this kind of situation? Basically Child Protective services is claiming that I lied about my sons medical history to get attention, and putting him through endoscopy and blood tests is child abuse. Yes everyone here that has had there children tested despite what we were told, and despite it being done by dr's orders is at risk for be accused of child abuse. I am in this fight of my life and have no control. Everyone please make sure to doccument everthing and if you go to dr make sure to know exactly what they are writting and always always have someone else go with you, a husband friend or relative. Because, what you say to them and what they write in there notes is not always the same thing. I am sorry I didnt mean to frighten anyone, I am just scared and hope that you all will be able to support me, imagine if they came and took your kids for trying to help them.

Is there anyone here in NY? You all know having celiac and being diagnosed is the hardest part. I myself went years with people not knowing what was wrong. I am sure you all can relate, but how do you deal with getting a diagnosis for a child? How do you get people to understand?

Cindy

[CarlaB]

Wow, I'm speechless. You hear these stories, but never straight from the source! It sure sounds like he has it! Can you get him back based on that?

[zip2play]

I am so sorry this has happened. Is there anyway to get him going on a gluten free diet?

Monica

[Gcbec]

Wow, I'm speechless. You hear these stories, but never straight from the source! It sure sounds like he has it! Can you get him back based on that?

Well, we spoke to Columbia and they told me this am that they need to see him. But they are willing to review his blood work and based on history blood work and me having it they are trying to see if they can send a letter to comirfm. I would think that if they have any (which they dont) morals at all they would IMEDIATLY realease my children. I can tell you that if my attorney tells me they wont, I will go to every news station and tell them what is happening until they release my children. I never heard of this until it happened to us, my husband and family and all neighbors even my sons teachers and his regular pediatrician all support us. But CPS and the judicial system is corrupt and we are guilty until a judge finds us innocent. I was also told by Columbia University (which is were Dr Peter Greene world renowed in celiac) that there are very very few places in United States that can give a posative diagnosis of celiac. So despite the fact that he had a negative endoscopy it means nothing at all becaseu that dr does not have specialty in celiac. She told me there were truley only 6 places in the US that can give acurate diagnosis. Thaks for the support I am going to attorney now. Please everyone here pray for my family....

Cindy

I am so sorry this has happened. Is there anyway to get him going on a gluten free diet?

Monica

Thanks Monica,

Unfortunatly no there is no way to get him on gluten free diet. We are not even allowed to talk to the kids on the phone. It has been 51 long days since I last hugged my babies and told them be strong I love them. I pray for there saftey and return.

Cindy

[rinne]

I would say it is unbelieveable except that my sister had a similar situation. This is truly terrible. I'm so sorry you are having to deal with this.

It sounds to me like you would benefit from an advocate, are you connected to a local Celiac Support group?

There are so many great people on this forum, hopefully someone will be able to help you more.

[AndreaB]

I am also shocked. I have heard of children taken from their parents based on supposed "neglect". There is also a case online that happened in Oregon, but these people were traveling homeschooling family. I do know parents rights are being stripped from them. Just look at the case of the 16 year old teen that is being refused his right to choose medical treatment. His parents have been charged with "medical neglect". I can't believe that they took your children away because you were searching for answers to health problems. I will definately add your family to our prayer list. Do you ever get to see your children?

So now we can be charged with "neglect" for medical testing, non-vaccinating, possible traveling homeschooling, kids falling from trees and being dirty. Did I miss anything. I'm becoming very upset about all this. Poor children are being taken from their secure families for the insane reasoning of those in power. My heart bleeds for you and your family.

[CarlaB]

On the one hand, I can understand why "guilty until proven innocent" with taking children away in time of REAL abuse! But in the case of the parents being charged with medical neglect when they did the research and made an informed decision with their son in deciding not to do traditional chemo ... and this case, where the parents went to doctor after doctor in the best interest of their son ... Having been a homeschooler for 10 years, this is something we all were very cautious of, especially back in 1994 when there just weren't as many homeschoolers as today, and I did hear stories, but secondhand, never from the person it happened to.

I sure hope that some documentation from the celiac expert will persuade the court you did the right thing. Maybe if Dr. Greene writes a letter outlining specifically what you said about there only being 6 places that can accurately diagnose will help.

I wish I had known that about the six places ... I wouldn't have wasted all that time on the gluten-challenge and all that money, etc. on my endosopy, which was inadequate.

I'll keep this intention in my prayers. Keep us posted.

[Guest nini]

OH MY GOSH... this is outrageous... I would fight tooth and nail if this were to happen to me. My daughter did not test positive for Celiac, however I put her on the diet with the help of her pediatrician after the pediatric GI told me I was just being an over protective mother with an active imagination and that she "just had IBS" and to feed her MORE whole wheat. The very thing that was causing her to break out in hives as well as numerous other symptoms.

It is unbelieveable to me that these govt. agencies have nothing better to do than to torment families who are trying to find out what is wrong with their children.

I hope you get an advocate that is on your side and can get your children back. The whole situation is ludicris (sp?) Anyway. A parent should be able to determine the testing needed or not needed with the support of the pediatricians. These Dr.s work FOR us, not us for them, they should not have the power to claim anything. Unless of course there is obvious abuse and neglect, but in this case where on earth did they come up with that theory?

ugh.

my heart is breaking for you and I really hope you find a solution quickly and even if his tests are negative you should still be able to insist that whoever has him in their care at least try the diet to see if it helps. OMG.

[penguin]

OhmyGod. That is the most awful thing I have heard, although the NY system is a bit, ok a lot, overactive. I hope you have a good representative and that you're able to get the help you need to fight this ludicrous battle. Did they think you had Munchausens-by-proxy? I don't even know on what planet it is reasonable to take away your child because you're trying to make them better.

[utdan]

Hi there. That's the kind of ridiculous you usually only see in Hollywood movies! I'm so sorry to hear this happening to you, and that this goes on at all.

One thing I don't understand is that you said you were only following Dr's orders. I could see if you didn't follow Dr.'s orders than maybe there would be a case for neglect. Since you were only following the expert's opinion it is the Dr.'s duty of care to provide the proper recommendation. If the reccomendation is wrong then he get's sued for mal-practice. I don't see your liability or unfitness in this situation. I agree with seeking another attorney if this one can't do something soon to get your kids back. BTW great idea about going to the media if nothing else works.

[Judyin Philly]

APPALLED & HORRIFIED ARE NOT STRONG ENOUGH WORDS FOR THIS SITUATION...

SAW THIS TERM EARLIER ---BUT DID YOU EVER GET THIS DX ON YOURSELF IN WRITING ANYWHERE IN THE DOCUMENTATION....THE "Did they think you had Munchausens-by-proxy?" i WOULD THINK COULD BE GROUNDS TO REALLY FIGHT THIS WITH A GOOD LAWYER...51 DAYS.. THIS IS ASTOUNDING TO ME..

OF COURSE I WILL KEEP YOU IN PRAYER.

PLEASE LET US KNOW HOW THE LAWYER APT WENT.

BOTTOM LINE...IF YOU WERE FOLLOWING PED. ADVICE ...I JUST DON'T GET THIS..

I TOO PRAY YOU TOOK DOCUMENTION OF EVERYTHING..

pLEASE KEEP US POSTED AND WE'LL SUPPORT YOUR EFFORTS

JUDY IN PHILLY

[Canadian Karen]

OMG! I am also speechless!

Ya know, I am NOT one usually to advocate suing someone's butt off, but in this instance, if it were me and they ripped my children away from me for such a ludicrous reason, I WOULD BE GETTING A TOP NOTCH LAWYER, CONTACTING THE MEDIA, AND SUING THEIR SORRY BUTTS RIGHT INTO NEXT WEEK. Then, the money you win in your lawsuit you can use to help your children and any health issues they have in the future and also help them with the obvious trauma they have gone through because of this!

[Nic]

This is really scary to me. Just 2 hours ago I was on the phone with my sister discussing my youngest sons medical problems and the possibility of further testing. I jokingly told her that I was afraid to talk to the doctor about it because I am worried that they will think I am making it up and then take my kids. I was joking. How shocking to read this post. I am so sorry for your troubles but it does give us all something else to worry about. I have 2 kids both with unexplainable problems that I have been on a quest to resolve since they were young (one has Celiac but still has symptoms, the other has unexplained hypotonia and developmental delays).

Also, my ped. GI sent my son's biopsy to Columbia University for testing. That is where I got my positive dx. The first lab gave us a negative.

Nicole

[lovegrov]

If you've been diagnosed with celiac then you'd be irresponsible NOT to have blood tests and endoscopies done. According to all celiac experts I know of, ALL first-dregree relatives should be tested.

richard

[Guhlia]

My heart goes out to you. I can't imagine going through what you're going through. I couldn't choke the tears back when I read your story. I hope to GOD that you get your kids back and I hope that you can get a proper diagnosis for your son because it sure sounds to me like he has Celiac.

[Gcbec]

I am sitting here with tears rolling down my face reading everyones response. My heart aches for my children, every breath I take hurts. My attorney is very good, he is also helping another mother accused of the same thing from the same dr. The only way to get my son tested and seen by Columbia is to get court order. When I spoke to Columbia this morning they were telling me positive things like I mentioned. Bring him in he needs to be tested through them, ect. He has a positive IGG antibody test. The attorney said the only way to get him in is with court order the only way to get a court order is get a letter from them stating that they need my son in for testing that it is probbable he has celiac based on mother's history and positive blood test and symptoms and it is serious to get diagnosis immediatly. Well I called and the girl is trying to be very helpful, but she said becasue my son is not a patient yet, they are too busy to get him seen, and dont even know if they can get in this situation. She is going to talk to Dr Greene and I am praying they will help us,, If we can get him seen and diagnosed (which we are almost 100% he has it) then we can get the whole thing out of court and my kids will come home. Otherwise, they will sit and he will go undiagnosed and they will have a Judge decide if I could lied about my sons symptoms. Where is justice,!

The kids were palced with my brother in law and sister in law, both in which we have not spoken to in almost a year. They are against me in every way. They are even trying to stop my parents from seeing the children. On June 10th, cps came to my house came in without a search warrant, and becasue we had no idea what they were there for we didnt ask. They told us my childrent were in imenent danger (my son was on way to baseball picnic w/husband, and daughter on way for pictures at music studio) and they were being taken into protective custody. The accusing dr, claimed I have Munchausen Syndrome by Proxy. You see, the month earlier when we saw her my son was sick in the office( i was with my mom) she said he was buring up w/ fever and gave him tylenol, she did not document this. I told immunologist on June 8th that he was sick in her office and she said I was lying, I told her no I am not Dr is lying. Well, didnt think anything about it, turns out this Dr that accused me is not only a peditrician but she is director of cps, she calls the shots whatever she says goes. She said my son was put through too many test and procedures that was emotional and put his life at risk. This year my son had a bone marrow test, becasue that is what they thought was wrong in the begining, becasue of weight loss, fever fatigue and our peditrician sent him. It was negative, then they did cat scan, which was negative, but lots of stool in intestines. then they did endoscopy, which there was alot of imflamation, then they did blood work. THIS IS ALL..

It is very hard to fight, we have a dr telling lies. We have records that show truth. What scares me the most is that this can happen to anyone, anytime, it could be becasue you get upset with dr, it even happens when a Dr is trying to cover up malpractice. As I said I never took my son anywhere without my dr telling me to go, I NEVER lied about my sons symptoms, and as most moms here know, most symptoms are seen at home ot in dr office. I am hoping to get into Columbia get my son diagnosed and BRING MY CHILDREN HOME.... The support I recieved here today is overwhelming and I pray for all families going through this, or even the exhaustion of having a child that is sick. I hope everyone here will help me in this fight.. Thankyou

CIndy

[Canadian Karen]

Could you possibly get an American Celiac association to be an advocate for you? NIH or something like that? Put it to them this way: They are currently trying to get a campaign off the ground to get celiac disease more recognizable, right? Well, if they take on your case and go to the media, I would think it would be a win/win situation for both of you. You get your children back AND vindication, and they get media publicity and it puts celiac disease on the front burner.....

I would think that someone like a major medical assocation going to bat for you would give you much more weight in your fight.......

Good Luck, my heart goes out to you......

Karen

[Guest nini]

you need to take this to the media immediately. Get your attorney to do a press release or leak the story to the press or anything... but get the media involved, get your local Celiac support groups involved, this whole situation just screams to be in the news...

you need as many people in high places on your side as possible, and when you do get your children back, get your attorney to sue that Dr. for all she is worth... I am so angry and upset for you at this situation, I agree with Richard, any first degree relative of a dx'ed Celiac needs to be tested for it, and honestly, if he has positive blood work he absolutely has it, just most Dr.s are still in the dark ages and are clinging to the outdated notion that the only way to dx Celiac is by biopsy.

You need to make cps aware that even if his final medical results are negative NOW that does not mean that he doesn't have it. But, you do have a positive blood test to back you up AND positive genetic predisposition (YOU) so therefore assume he has it and fight fight fight to get him on the diet regardless of what the test results say. I mean for cryin out loud, it's as simple as a dietary challenge to see if it helps the kid at this point, you've got to get someone in authority to see that and help you in any way possible.

This is so scary to me because it could've happened with me, no one believed me when I kept saying my daughter had something wrong with her, sheesh for years I was called a hypochondriac and almost died before being dx'ed with celiac. As I mentioned earlier, my daughter's pediatric gi DID NOT dx her with Celiac, he did not believe me and if I had listened to him and not insisted we try the diet with her regular pediatrician's support then she would have continued to decline as well. As it was she was anemic, hypoglycemic, underweight, dx'ed failure to thrive, dx'ed GERD, and having violent emotional episodes that were triggered by eating. I shudder to think what would have happened to my daughter if I had listened to the ped. GI...

[Gcbec]

Could you possibly get an American Celiac association to be an advocate for you? NIH or something like that? Put it to them this way: They are currently trying to get a campaign off the ground to get celiac disease more recognizable, right? Well, if they take on your case and go to the media, I would think it would be a win/win situation for both of you. You get your children back AND vindication, and they get media publicity and it puts celiac disease on the front burner.....

I would think that someone like a major medical assocation going to bat for you would give you much more weight in your fight.......

Good Luck, my heart goes out to you......

Karen

You are absolutly right OMG I feel like coming here was the best thing I could have ever done Thankyou.. How would I get in touch with them? Yes I think getting this to media would be great but my attorney feels we should not until a ruling or find can be made. He thinks that the judge would have to cover up for mistakes and find someting else to charge me with.

[Judyin Philly]

I'm to angry to make an intellegent post right now

Agree with Karen and Nini ..where do you live?

Let's see if we can find someone in your local celiac support group (if there is one) and get someone on thIs asap...Just your home town or if it is small, the biggest city close to you.

There is one woman I can call Alice Blast who spoke at our local celiac disease group...she's in touch with drs around the US and speaks their 'language and has 'gone to the hill' to present bills..so let me know asap and i'm make a call and have her read your post and get her imput. She's knows Dr Green and has worked with him on research ====if I remberer correctly from the meeting.

maybe you have your info on your blog..can't look now..as I have to cook dinner and keep busy because I'm in a FURY... AND NEED TO 'DO SOMETHING' HUBBY WILL APPRECIATE DINNER.

JUDY IN PHILLY

[CarlaB]

I agree that the media needs to be on top of this -- it is a news story and will receive public outrage! I don't really understand why your attorney says to wait. Since there are two families who have had their kids taken away, and since there is a HUGE conflict of interest with the ped. since she's chairman of cps, people in your area especially need to know to STAY AWAY FROM HER!!! If anyone here is a danger to children, it's a person filing false charges against parents.

PS For those of you who homeschool, this is an example of why you pay your dues to the Homeschool Legal Defense Fund!!! They represent homeschoolers in situations like this one. It's like an insurance policy for lawyer fees.

[eKatherine]

My attorney is very good, he is also helping another mother accused of the same thing from the same dr.

CLASS ACTION LAWSUIT

[CarlaB]

CLASS ACTION LAWSUIT

Yea, I'd DEFINATELY go after her. She should be put out of business so she doesn't tear apart other families! I can't imagine how traumatic this is on the kids!

[GFBetsy]

turns out this Dr that accused me is not only a peditrician but she is director of cps, she calls the shots whatever she says goes. She said my son was put through too many test and procedures that was emotional and put his life at risk.

Anyone wonder whether CPS has a quota of "children protected" they have to meet every year in order to maintain their funding levels? Can we say conflict of interest?

[imsohungry]

You and your family are in my thoughts and prayers. I will pray that everything works out for you and your children to be reunited. Blessings. -Julie