Shocking Story

[schuyler]

Wow. My skin is crawling because I'm so outraged. I feel so bad for you and your family. I agree with the people who said that the media needs to be involved; the public will be as outraged as we all are. What has happened to you and your children is horrible and uncalled for. I am so sorry that you had had to go through this. I just hope that it all ends soon, and that your children will be returned to you (where they really belong). I'll be saying lots of prayers.

[rumbles]

Cindy,

I don't know if it will reach him directly or not, but I just sent an email to Dr. Peter H.R. Green, M.D. at Columbia University advising him of your posts, and requesting his assistance.

In the meantime, please discuss with your attorneys about your attorneys engaging the media and your lpolitical representatives. Also please contact your local Celiac support chapter and the national chapter for their assistance. This is outrageous.

Keep us posted, - you have definitely touched everyone that reads this, and we are here for you however we can be.

[GFBetsy]

Anyone out there a gluten-free NY lawyer? It would certainly help to have someone who really understands this illness testifying on her behalf . . .

[Lymetoo]

On the one hand, I can understand why "guilty until proven innocent" with taking children away in time of REAL abuse!

NO kidding!! The same thing has happened to parents of children with chronic Lyme disease. Several times that I know of. It's really sick on the part of these "drs"!!

I will pray you get your children back....and I'm betting you WILL!

Hang in there!!

[Nic]

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..

Aren't these test, maybe with the exception of the bone marrow test, the same tests that most of us "put our kids through" trying to come up with a diagnosis? For my poor son you can add a barium enima to the list. It was tough on him but he is ok now.

Nicole

[penguin]

Anyone out there a gluten-free NY lawyer? It would certainly help to have someone who really understands this illness testifying on her behalf . . .

Where in NY are you? The CUNY School of Law in Queens is highly rated for their clinical program, and have a good sized aide practice. This school is very progressive and are easily outraged, I would contact them if you're in/near the city. I think they even have a health law clinic. I would also call every patient advocacy organization that will listen. This is insane!!!

[aprilh]

I cannot believe this! Did they have any other reason for taking your children away? Any prior history? It is just unbelievable but yet believable that this could happen. I would be sick without my babies! That is neglect by the justice system.

Can you get the the positive blood test and show them, maybe get some documented research together along with it and take it to court or to the attorney as proof? Sounds like the dr. who did the blood work, that came back positive, but said it was negative needs to be SUED!!!! That is outrageously WRONG!!!

Ooh, I am praying for you. Please get all your documents in order. Try to get some Medical studies, you can probably find some on the internet. Dangerous Grains, the book, recommends this.

If I run across anything that I think will help, I will post.

[Rikki Tikki]

Is this the only reason the children were taken? What does the paperwork say exactly? What were the reasons for the detainment?

The other important question would be is their health improving out of your care? Not trying to be rude, just asking for factual information so maybe can give you advice.

[Luvs to Scrap]

I am so shocked and outraged that something this ridiculous can be allowed! As a mother who just spent the afternoon at the lab "abusing my daughter by having lots of blood drawn for celiac testing per drs orders" I don't understand how they would think you would have tests done for the fun of it. My DH has celiac and so does my DS and Kirsten is showing the same symptoms so that is why we are having her tested. You were doing the same thing as us because of your diagnosis and are getting accused of child abuse and having your kids taken away. Why don't they spend their time taking care of kids who are really abused not ones whose parents love them enough to try to get them the diagnosis and help they need. I will definitely keep this situation in my prayers. I agree this situation needs media attention. Kendra

[Judyin Philly]

Is this the only reason the children were taken? What does the paperwork say exactly? What were the reasons for the detainment?

************************************8

This is an important question... make sure you find this paper work and have it out in case Alice Blast calls you...I got your PM and thank you.

sending another email to you

Judy in Philly

this is a quote from Dr. Peter Green---

sent you the link ---This should sure be something in your 'corner' of the fight.

*******************

"Because the disease is hereditary, family members of people who have been diagnosed should be tested for the disease, says Dr. Green. "About 10 percent of an affected person's first-degree relatives (parents, siblings,

children) will also have the disease," he says. "The longer a person goes undiagnosed and untreated, the greater the chance of developing malnutrition and other complications." Untreated people can incur a higher risk of additional autoimmune disorders, neurological problems, osteoporosis and even cancer".

[chrissy]

like tavi, i am wondering what the actual charges were? i don't think that lying is grounds for removing children from a home.

[Canadian Karen]

Anyone remember the reporter's name David __________ at the Wall Street Journal who has gone to bat for us before? I think Peter (Sawyer) has his e-mail addy........

Karen

[Gcbec]

Again, I must say I am overwhelmed with everyones responses. For weeks my husband and I have been trying to figure out what to do. I am going to try to answer as many questions as I can.

Dr Greene was sent a message by his administrator at Columbia, she said there is a long waiting list and because my son was not a patient and becasue of the situation they were unsure if they would be able to help. She sympathized with me and took our information and was sending it to Dr Peter Greene to see what he could do. I also left a message with for my dr, but have gotten no return calls yet. I take that back I just got email response from Dr Greens office, she said it appears the tests were negative? I am not sure what she is talking about but I DO know I am looking at blood tests that show IGG positive, does that mean anything to anyone? It says Celiac Antibodies and IGG says 24.2 and flagged as High. Anyone help?

I must say my heart has dropped with this email because it sounded as if they really cant help because they havnt seen my son. Please anyone what can I do? I would love to go to media but I have no proof to back up the theory, and the acusing dr will use the defense of me lying. My only hope was to get him in and diagnosed and get support in getting my children home.

As far as other reasons for taking our children,, NO there were no other reasons at all. NONE they claim I lied about his symtpoms and medical history. Which when you read all medical records you can clearly see is not true. This Dr has got to be stopped before any more innocent families are destroyed. Yeah I know most of your children have probably had more tests done then my son. And we even had a dr take my son out of school for the year in September becasue they felt he was too sick. He has been on Home Tutoring.

Cindy

[Judyin Philly]

Cindy--

1. As far as other reasons for taking our children,, NO there were no other reasons at all. NONE they claim I lied about his symtpoms and medical history. Which when you read all medical records you can clearly see is not true.

TERRIFIC..THIS SHOULD BE GREAT EVIDENCE IN YOUR FAVOR AS WELL AS THIS---.

2. And we even had a dr take my son out of school for the year in September becasue they felt he was too sick. He has been on Home Tutoring.

Cindy

The forward didn't seem to go through the dang PM..so will try to put it here.

I would sure think that Dr. Greens opinion would have more clout...than your dr's...Just pulled this off a link i tried to forward to you in pm

********************************

"Because the disease is hereditary, family members of people who have been diagnosed should be tested for the disease, says Dr. Green. "About 10 percent of an affected person's first-degree relatives (parents, siblings,

children) will also have the disease," he says. "The longer a person goes undiagnosed and untreated, the greater the chance of developing malnutrition and other complications." Untreated people can incur a higher risk of additional autoimmune disorders, neurological problems, osteoporosis and even cancer".

good luck Cindy. I still think you need some Celiac expert to help your lawyer pursure this esp if your going to the media..I'm sure this Alice Blast will know the 'ropes.

judy

EDIT--I WAS HAVING TROUBLE SENDING LINKS TO CINDY

HERE ARE THE WEB SITES WHERE I GOT THE QUOTE FOR DR. GREEN.

Shortcut to: Open Original Shared Link

AND THE DR. GREEN QUOTE WAS FROM A LINK FOR THIS WEB SITE.

Open Original Shared Link & Open Original Shared Link

If Dr Green wrote the article I would think he wouldn't mind being quoted but Cindy's personal Dr's names should be left out..I agree.

[Gcbec]

like tavi, i am wondering what the actual charges were? i don't think that lying is grounds for removing children from a home.

No there were no "charges" but allegations. They claim I have Munchausen Syndrome By Proxy which is that I lied about my sons symptoms to get attention from Dr's. Basically I took him to to many dr's for attention and as a result of my "lies" my son recieved unnessisary and potential harmful medical tests.

Now as everyone here knows, Celiac is so hard to diagnose it took me several years before I got diagnosed. That didnt mean I didnt suffer and have symptoms before I was diagnosed.

[Guest nini]

I would talk with your GI dr. about this situation. Ask the office to have her/him? call you as soon as possible and maybe your Dr. would have some ideas.

[Rikki Tikki]

Again, what are the reasons as stated on the paperwork in Court for the detainment of your children? You should of already had at least one court date? What was the decision? Why has it been 51 days since you have seen your children? You haven't had any visitation, if not why? They are placed with family? What exactly were the allegations that were made? And most of all what is the health of your son now since he has been out of the home?

[Gcbec]

Is this the only reason the children were taken? What does the paperwork say exactly? What were the reasons for the detainment?

The other important question would be is their health improving out of your care? Not trying to be rude, just asking for factual information so maybe can give you advice.

Hi Tavi,

My son was also on Adderall, and when he was taken they stopped this medication. As far as his headaches and fevers they have stopped. As far as his poops and belly aches they have not. The problem is we have no contact and cant be for sure of how things really are. My parents were there and wittnessed his severe poopy episode after he had pasta dinner.

I know how strange this sounds to everyone believe me, our family freinds neighbors and teachers could not beleive it either. Everyone has wittnessed my son sick especially this past year, yes we feel the adderall also had a big effect on him. But I swear on my children, what they are "charging" me and my husband with is that I lied about my sons symptoms and he went under too many medical tests as a result. We have even hired Expert Witness Physchologist to review all his medical records to show my innocence. That is when we noticed the posative antibody test when we were reviewing notes. I have been saying all along this is what it is, Celiac disease. Like I said the other part is adderall effect on him as well.

I hope this clears up any questions if not I dont mind answering anything else. I know how unbeleivable it sounds and that is why we are still in shock.

Thanks CIndy

[Lymetoo]

Just to be safe, I would suggest NOT giving drs' full names here, coupled with what they said. Perhaps it's OK to quote Dr Greene....but any correspondence with any drs should be kept private for your and THEIR protection.

[Gcbec]

Again, what are the reasons as stated on the paperwork in Court for the detainment of your children? You should of already had at least one court date? What was the decision? Why has it been 51 days since you have seen your children? You haven't had any visitation, if not why? They are placed with family? What exactly were the allegations that were made? And most of all what is the health of your son now since he has been out of the home?

Yes we had 2 court appearances, the first one we recieved petition. The second time we were denied any contact with my children they even placed an order of protection against my husband and I. They claim if we see the children we might phychologically make them sick. We are dealing with a Dr and a judge that are trying to get another notch in there belt. We are not even allowed to send my daughter a birthday card next week. If anyone wants to read about this the best place to read about Munchausen Syndrome is to go to www.msbp.com

[Judyin Philly]

EDIT--I WAS HAVING TROUBLE SENDING LINKS TO CINDY

HERE ARE THE WEB SITES WHERE I GOT THE QUOTE FOR DR. GREEN.

Shortcut to: Open Original Shared Link

AND THE DR. GREEN QUOTE WAS FROM A LINK FOR THIS WEB SITE.

Open Original Shared Link & Open Original Shared Link

If Dr Green wrote the article I would think he wouldn't mind being quoted but Cindy's personal Dr's names should be left out..I agree.

Judy

[Gcbec]

EDIT--I WAS HAVING TROUBLE SENDING LINKS TO CINDY

HERE ARE THE WEB SITES WHERE I GOT THE QUOTE FOR DR. GREEN.

Shortcut to: Open Original Shared Link

AND THE DR. GREEN QUOTE WAS FROM A LINK FOR THIS WEB SITE.

Open Original Shared Link & Open Original Shared Link

If Dr Green wrote the article I would think he wouldn't mind being quoted but Cindy's personal Dr's names should be left out..I agree.

Judy

I agree the only Dr name I used was Dr Green no personal dr names were mentioned not even the accusing dr name was mentioned as far as I see.

[2kids4me]

My heart goes out to you, I have seen stories on 20/20 about children with medical conditions that were taken from families - authorities were convinced that the family was making the kids ill, only to find out months later that the child HAD a rare condition (or sometimes not so rare).

These are some sites I found - google: munchausen misdiagnosis and lots of sites come up.

Open Original Shared Link

Open Original Shared Link

Get the media involved, call 20/20 and ask them if they have an archived show about misdiagnosis of munchausen by proxy. Heck, call Oprah!

Is it possible to ask the lawyers or CPS to have celiac ruled out while the child is under their care? or they will be liable for not giving appropriate medical care.

I am so upset for you, it must be painful every day. I hope you have lawyer who can fight tooth and nail for you

Also , when they did the endoscopy, did they take biopsies or was it just a subjective visual exam? - even so inflammation is not normal in the small intestine without a cause! My daughter's endoscopy looked fairly normal (quote from GI) visually and her antibody levels were not that high - yet the GI doc phoned me 3 days later to say the biopsy confirmed celiac sprue. So "looking' alone doesnt cut it.

Lordy, if anyone had looked at the bloodwork and biopsies and psychological tests and scans and xrays done on my daughter with her multiple problems - I could just have easily been in the same boat if the wrong doctor had seen me!

[eKatherine]

You need a celiac specialist doctor for an expert witness, not just a psychologist. Just because a doctor can't see your children doesn't mean he can't talk authoritatively about proper treatment of celiac and the difficulties in getting a diagnosis. Have you done Enterolab on yourself and your husband? Knowing what genes you carry will show what risks the children are likely to have inherited. In fact, a family tree showing who has what genes would make a nice piece of evidence. It might convince your family to give you a little more cooperation, too. I'm thinking a "poopiness" episode might have provided a sample for an Enterolab test...

You can always find doctors who are willing to serve as expert witnesses if you are willing to pay standard rates, and if you can find someone who is looking to advance the cause, you might get a break on that.

[Gcbec]

You need a celiac specialist doctor for an expert witness, not just a psychologist. Just because a doctor can't see your children doesn't mean he can't talk authoritatively about proper treatment of celiac and the difficulties in getting a diagnosis. Have you done Enterolab on yourself and your husband? Knowing what genes you carry will show what risks the children are likely to have inherited. In fact, a family tree showing who has what genes would make a nice piece of evidence. It might convince your family to give you a little more cooperation, too. I'm thinking a "poopiness" episode might have provided a sample for an Enterolab test...

You can always find doctors who are willing to serve as expert witnesses if you are willing to pay standard rates, and if you can find someone who is looking to advance the cause, you might get a break on that.

That is a very good idea. My hopes were to get him in to be checked at Columbia but that doesnt seem very possible. So what would be the next best thing I suppose would be to get involved with expert wittness or expert dr in the feild that can review all his medical charts and if anything give the probability of my son having Celiac. I know it wouldnt be the quickest way to get them back and this way we will have to wait till the end of September for our trial. I will look into this thankyou.

As far as getting on TV it is not as easy as it sounds. Remember I am being accussed of lying about my sons symptoms, so if I go to media what sounds normal to people with Celiac is not always normal to people without celiac. I am going to contact National Celiac Association and see if they can help today. Maybe with there helpand everyone here can approach this the rigt way. I wil l keep everyone posted.

Thanks again for everyone, you have all provided me with strength and courage to get through another long day without my babies. I truely appreciate it.

Cindy