Shocking Story

[Gcbec]

This is nuts....I'm a social worker w/ experience in child mental health and DSS/CPS and this is absolutely absurd & the most insane thing i've ever seen. I am so sorry this is happening to you. I'm personally FURIOUS at the no visitation, not even supervised visitation.

If it were me i'd contact congressmen/women, senators, everyone and their brother in my area and voice my situation. I'd also seriously think about the media (Nancy Grace @ CNN, Greta V. at FoxNews, Bill O'Reilly @ Fox News, local stations, newspapers, etc). I also like the idea of contacting other celiac organizations that might be of some help or if nothing else a voice on your behalf. My hope is that the support group you've located will also be helpful.

I can also see if your attorney tells you not to go this route right now...but it makes me angry to watch this unfold and you feel so powerless...there has to be something....

You made reference to NC...are you living in NC or are you living in NY? I was never clear about that. If you are living in NC please PM me. I have a lot of connections in NC. Not guaranteeing they can help but hey, never hurts to try right?

Hang in there and keep us posted....we're behind you.

Yes I know the reason why we were given no visitation is because they are afraid we will send phsychological message to the kids and they will act sick. And becasue the county attorney made up statistics that there is 100% mortatlity rate for children in this kind of abuse, he claimed it was the worste case of child abuse. So you tell me there is a story in the paper that a 2 year old was killed by mothers boyfriend , this family was reported by neighbors, day care ect. the child had burns bruises all over. Cps goes and checks and leaves the child there. Now my children are always clean, happy , and never alone, and not one mark on them I made the police look at them yet they come in and take my kids. Convicted murderers have more rights thatn my husband and I have.

We use to live in NC we now live in NY. We have so so much support from NC from the dr that delivered my children the whole hospital, pediatrician and gi dr's church and friends. Here too but we dont have anyone that seems to be able to help.

You being a social worker, what would you do if the director of cps reported a case? Why wouldnt it be investigated first? this happened on June 10th they still have not finished investigating, and still NO ONE has spoken to us about the charges at all. the case worker was told we would speak to him with our attorney present but he has not tried to set up anything. They have not even checked on the children, although he was suppose to go today. The government pays alot of $ to support family reuinification and every state fails. There whole plan is to terminate our rights and this dr and cps and the judge and the attorney for county put another notch in their belt. We are only a # not a family.

I agree I am going to contact as many people as I can (although my attorney told me I shouldnt involve anyone else) he said we are on a boat and there are life boats telling me to jump into there boat and he fears I will end up sunk in the water. Yeah he doe alot of anologies.

I am going to try to go to other support groups, but I have gotten so comfortable here I dont want to leave. I thank you all for everything. Again anyone have a GI DR that they can talk to and ask for help???

This link doesn't work??????

Thats so funny that is not what I typed sorry...

it is www. my space . com / gcbec

take out the spaces it should work..

it is my space dot com / my screen name

[ravenwoodglass]

I agree I am going to contact as many people as I can (although my attorney told me I shouldnt involve anyone else) he said we are on a boat and there are life boats telling me to jump into there boat and he fears I will end up sunk in the water. Yeah he doe alot of anologies.

This is only my humble opinion of course but it sounds like you need an attorney that will fight for you. I would contact a child advocacy group and ask if they know of a good attorney. This one sounds like he may be a good one but you might need someone who is more agressive. Can you find out how many cases like this he has fought, and more importantly won? Is possible with some media attention another attorney might also help you gratis for the good publicity?

[Turtle]

GcBEC:

I have sent you a PM....

[eKatherine]

I presume that link is from a free webhost that is blocked by this site for spam, as I've seen happen with tripod links.

One more thing. If you ever meet with the doctor again, bring a concealed recording device.

[Gcbec]

GcBEC:

I have sent you a PM....

I sent you one back

I presume that link is from a free webhost that is blocked by this site for spam, as I've seen happen with tripod links.

One more thing. If you ever meet with the doctor again, bring a concealed recording device.

you mean the accusing dr? NEVER do I want to see her again, I gre up not knowing the word hate in my vocabulary, but I can honestly say I HATE THIS LADY

I think it is a good idea to take a device with us to any other dr we go to though thanks

Well we went to Celiac support meeting and it was really wonderful. I waited till the end to discuss my situation and there was not one person that could understand how and why this happened. There was a young mom there that has 2 children that they beleive to be celiac. I think she was most horrified at our story, her children are 18 months and 4 and have had some history but no definate diagnosis just like us. They were able to give me a name of pediatric GI dr in area that hactually has a son with celiac. So I assume if I can get in to see her she will have great understanding for what we are going through.

Thnkyou everyone for all the support and prayers. I will keep you all posted.

[Judyin Philly]

cINDY

JUST GOT A EMAIL POST WHERE YOU TALKED ABOUT GOING TO THE SUPPORT GROUP TONIGHT.

gOOD FOR YOU.

sO GLAD YOU GOT AT DR'S NAME.

I GOT YOUR PM AND GLAD YOU CALLED THE OFFICE OF ALICE BLAST...AGAIN, GOOD FOR YOU FOR TAKING ACTION..pATTI (jERSEYANGEL) TOLD ME TODAY THAT THE AUG, ISSUE OF GOOD HOUSEKEEPING HAS A ARTICLE ON HER.

JUST THOUGHT YOU'D LIKE TO KNOW.

GOOD LUCK CINDY.

jUDY IN PHILLY

[Rice Cakes]

One more thing. If you ever meet with the doctor again, bring a concealed recording device.

You will need to stay within legality Cindy, and Open Original Shared Link suggests you can indeed do this legally in both NC and NY (although I gather you would only consider doing this in NY).

I should point out I'm not sure how useful this tactic would be, but I maybe you want to anyway.

[Guest Robbin]

Cindy, I saw in your original post you had a report from an immunologist stating that your son's IGg levels were 3 x the normal for celiac. Why didn't they accept this report and look further into it? Isn't this, coupled with your diagnosis enough to at least investigate this further? I think that the "dr." who ordered your children removed must have seen that "House" television episode. I was afraid that episode would give celiac sufferers a bad rap. When I read that this "person" is the director --I was disheartened-but, she could not have gotten this far, with that attitude, without stepping on quite a few people, so I am thinking this may not be as bleak as it seems. I am praying for you and thinking of you so much today.

Carla had a good idea, Dr. Fine is a kind man and maybe could advise you. Try calling or emailing his lab. I hope you can rest and eat properly, your kids need you to be healthy and strong for them. You will get them back.

[plantime]

It sounds to me like your lawyer is just sitting on his glutes drawing pay. Fire him, get one that will work for YOU, not your opponent.

[utdan]

It seems that the dr's own ego and mouth will get her in trouble quicker than anything else right now so recording her might give you an edge in court.

[rinne]

What was your sisters outcome? I dont know if there is a support group on my area. But I know that everyone here has been wonderful.

My niece has Prader-Willi and so around six months of age she started to eat, prior to that she wasn't and Child and Family Services thought my sister was neglecting her. They never removed her.

I am wondering about your immediate community, you said your neighbours were shocked at the children being taken. Friends, co-workers, school teachers,....would they be willing to write letters, would any of them organize a letter writing evening? I have heard that each letter to a politician is taken to represent the views of a hundred voters so if you could get more letters going it would get them to pay attention and I would send the letters to your local media outlets. Also, if your neighbours were willing to come together to support you perhaps they could organize a social to help pay for your legal costs. I think if people are given specific things to do they are often more willing to help. You need a committee, you need to fight, and you have to take charge, at the end of the day the lawyer will walk away, you will not.

I would show up in court with all the support I could muster, letters testifying to my sanity and good mothering skills, and if I had friends who could come I would take them too.

[snapple]

I presume that link is from a free webhost that is blocked by this site for spam, as I've seen happen with tripod links.

One more thing. If you ever meet with the doctor again, bring a concealed recording device.

Be very careful about having a concealed recording device. Some states allow you to conceal a recording device as long as you know that it is concealed. Others will not allow any concealed device, even if one party knows about it. Be very careful! Look up the laws of your state before you decide to conceal a recording device!

[Turtle]

I'm so glad the support group was helpful!! That's great that you were able to make a new contact as well. Hang in there!

[Gcbec]

My niece has Prader-Willi and so around six months of age she started to eat, prior to that she wasn't and Child and Family Services thought my sister was neglecting her. They never removed her.

I am wondering about your immediate community, you said your neighbours were shocked at the children being taken. Friends, co-workers, school teachers,....would they be willing to write letters, would any of them organize a letter writing evening? I have heard that each letter to a politician is taken to represent the views of a hundred voters so if you could get more letters going it would get them to pay attention and I would send the letters to your local media outlets. Also, if your neighbours were willing to come together to support you perhaps they could organize a social to help pay for your legal costs. I think if people are given specific things to do they are often more willing to help. You need a committee, you need to fight, and you have to take charge, at the end of the day the lawyer will walk away, you will not.

I would show up in court with all the support I could muster, letters testifying to my sanity and good mothering skills, and if I had friends who could come I would take them too.

the day the children were taken someone suggested letters and another neighbor is notary, she sat in my house and every neighbor came in with letters and tears. Remember I live accross the street from my oarents, I grew up in this neighborhood. The next few weeks I recived more lettters even from freinds in other states, and dr's and church. I was told I could have a letter from every person in the world, does that prove anything? We have a list of over 20 people that are testifying on my behalf, these have to be people that can provide exact dates when my son was sick. This includes family friends, baseball coach football coach, even waitress at resturaunt (we have reciepts to show we were there) People want to help as much as they can, but with this there is not so much anyone can do. Although it would be very helpful if I could get someone here to help organise all the records and such. Thanks for the wonderful suggestions.

Cindy

[Gcbec]

Cindy, I saw in your original post you had a report from an immunologist stating that your son's IGg levels were 3 x the normal for celiac. Why didn't they accept this report and look further into it? Isn't this, coupled with your diagnosis enough to at least investigate this further? I think that the "dr." who ordered your children removed must have seen that "House" television episode. I was afraid that episode would give celiac sufferers a bad rap. When I read that this "person" is the director --I was disheartened-but, she could not have gotten this far, with that attitude, without stepping on quite a few people, so I am thinking this may not be as bleak as it seems. I am praying for you and thinking of you so much today.

Carla had a good idea, Dr. Fine is a kind man and maybe could advise you. Try calling or emailing his lab. I hope you can rest and eat properly, your kids need you to be healthy and strong for them. You will get them back.

Yeah well, thats what we want to know, they never even shared with us the fact that the # was elevated. LAst week when reviewing the records we saw it, it was circled and then + next to it. But this was also the same dr that sent us to the acusing dr, as someone else noted maybe they were trying to hide something maybe there is something else that we dont know? I didnt see the house episode what happened? I know I dont know how she has so much power, my friend that is in the same situation becaseu of the same dr told me but I didnt beleive her. Of course we met after our kids were taken but I still thought there is no way she is that powerful, I was wrong. She even had a security guard fired at the hospital, and a case worker removed from position (friends case) because she said there was no case. This is true it is in friends notes. She also talks to family(that has kids) every few days and tells them lies to keep them on her side. I mean this is really bizarre.

I am going to try to get through to Dr FIne, I would like to know if there is anyone that will review my sons slides from endoscopy, and records and give a diagnosis. That is what I really really need.

[rinne]

I worked as a social worker, at least I did until my supervisor told me to tell a woman that she could get a lawyer, we were apprehending her son, but it wouldn't make any difference. I supported taking him into care but not the power trip and too often that is what happens. If parents want control of the process they can be seen as being very difficult, too demanding, obviously angry ........because if they didn't start out that way they end up angry and irrational at the way their children and they are treated and there's the trap.

For the most part when people have their children taken away they are ashamed and intimidated and they don't want people to know what is going on. The system relies on this, it depends on people feeling powerless and humiliated. Those who uphold the system do not appreciate seeing it challenged so anyone who does challenge it, in my opinion, needs lots of support and lots of publicity. Publicity, particularly if it is clear it is going to be unfavourable can make them back off. This is why I say letters from your minister, teachers, neighbours .... to Child Protective Services, saying there must be a mistake.....

I'm glad you found this board and I hope your children will be returned to you soon.

[Gcbec]

I worked as a social worker, at least I did until my supervisor told me to tell a woman that she could get a lawyer, we were apprehending her son, but it wouldn't make any difference. I supported taking him into care but not the power trip and too often that is what happens. If parents want control of the process they can be seen as being very difficult, too demanding, obviously angry ........because if they didn't start out that way they end up angry and irrational at the way their children and they are treated and there's the trap.

For the most part when people have their children taken away they are ashamed and intimidated and they don't want people to know what is going on. The system relies on this, it depends on people feeling powerless and humiliated. Those who uphold the system do not appreciate seeing it challenged so anyone who does challenge it, in my opinion, needs lots of support and lots of publicity. Publicity, particularly if it is clear it is going to be unfavourable can make them back off. This is why I say letters from your minister, teachers, neighbours .... to Child Protective Services, saying there must be a mistake.....

I'm glad you found this board and I hope your children will be returned to you soon.

I agree, from the beginging I knew I did nothing wrong , and I knew what they were saying were all lies, I even asked if the accusing dr could take a lie detector test and I would agree as well. I was told NO not in family court. Then we began recieving all the records and I invited friends and family to come in and read what the dr wrote, and what the records show. People were amazed at how she turned words around and out right lied in her report. What I dont understand is if there is an investigator isnt he supposidly suppose to review all the records and how can he not see this? The investigation started on June9th they still have not shown it to be founded child abuse, so I am hoping that maybe maybe there is a small chance that he cant find it and cant even lie about it without getting caught. I mean if it was so obvious to us and non medical people how can he being a child abuse expert see any sort of child abuse.

Did you ever come across a case like this with acusations of Munchausen? When I mentioned this at the support meeting last night everyone was in shock, especially when I told them my sis in law doesnt think Celiac exhist and I made up. I want to go to media but like you said I want to get everything lined up first, I really want to get a dr to look at my son's records and be able to confirm celiac (to the best of there ability w/out seeing him) I know it woudnt be a final diagnosis but a start.

Do you have any suggestions on how to deal with social worker or case worker? He has not even interviewed us at all.

[mommida]

There was a case mentioned in Danna Korn's book, Kids with Celiac Disease, where an undiagnosed child was removed from the parents. The child's symptoms were the same in the foster home and then testing was done to diagnose Celiac. (Don't panic - it took two years to get the child back into their home. No one in that scenario knew about Celiac, so half of the battle is over in having the knowledge of Celiac.) Shouldn't your lawyer have found documentation on other cases? If not I think some computer savy members here can flood you with that type of documented errors of Celiac diagnoses and custody cases.

I hope you find comfort as I point out how strong you are...

You are a mother.

You grew life in your body. Your womb or your heart - life grew in another.

You will do what you must for your children. Stay strong and find the best experts to help you. The truth will be known - and the truth will set you free.

You also have a major lawsuit to win.

L.

[rinne]

Did you ever come across a case like this with acusations of Munchausen?

No I never did. I didn't work very long as a social worker, I couldn't support the actions I saw being taken.

I hope that you get a good worker and there are good social workers because that will make a difference. In any case I would say it is important to be as calm as you can be, don't give in to anger or emotion but at the same time you have to make it clear that you are heartbroken, you need to convey that naturally you are distressed about what has happened to your children but your primary concern is their health not the fact that they were taken away from you. I think it would be helpful to have information about Celiac for the worker, be organized, have copies to give them. If you can convey to them how difficult a diagnosis of Celiac is and that you appreciate that but given your son's health issues and your own diagnosis (documented) you think the priority is a correct diagnosis. This is where genetic testing may be critical. Perhaps the letters I mentioned before can't be presented in court but if you were able to show the social worker how much support you have it may make it clear to them that this might not be the usual "invisible" case and that perhaps a mistake has been made.

I don't know if this helps, I am thinking that finding someone who has been through a similar experience might be the most helpful.

[Gcbec]

I just wanted to let everyone know,,, spoke to my attorney...

I am going to dr in a little bit, for myself.My childrens good pediatrician's husband is a GI dr which my dr wants me to go see. My attorney asked me to bring the blood work results from my son and tell him, maybe together he and his wife(the peditrician) can give my son his diagnosis. You see his peditrician has not even seen the blood work we have, she isnt aware there is a positive blood test at all. So if we can get her since she has seen my son enough to give diagnosis based on gi dr and symptoms and lab work then we have a great thing.. EVRYONE Please say some prayers this might not be that easy or as quick as it sounds. I am going to my regular dr today who has to refer me to GI dr (which he will) then make appointment and see him, so it will take a few days at least but hey this is great news. There is a glimmer of hope!!!!!!!!!!!!!!!!

Cindy

Oh yeah and if I get positive celiac diagnosis for my son you bet I am going straight to media with the information you bet!!!!!!!!

[Turtle]

That's encouraging news!!!

Praying for you! Keep us posted!

HUGS!

[Gcbec]

I will keep everyone posted. I still have not heard back from my Dr at Columbia University. And I called the dr the support group suggested, I left a message with nurse. She was not sure what could be done but was going to have the dr call me if she could do anything. It is scary becasue she probably knows this dr and who knows maybe they heard about the story in a meeting or something I am worried my phone call might make things worse for me. I dont know too many decisions to make.

[Turtle]

I can certainly see how you would be nervous about drs talking with one another...BUT one word HIPPA! So technically, the dr who made the allegations should not be disclosing your/your children's medical information or situation with anyone that YOU have not signed a release for. That's my 2 cents for the afternoon!!

Don't give up....KEEP ON PUSHIN'

[2kids4me]

I hope that you can get someone to help you. A suggestion though - you keep talking about "the lies" in the reports etc. I am not doubting you at all - words have been twisted and for whatever reason, things were written in reports that have no basis.

Maybe keep to the facts - show the results of testing so far, and that appts with other doctors were referrals not you going from doctor to doctor. When challenged with the so called "evidence" (the lies in the report)...say that you are tired of your son being ill and only want to find out what's wrong with him and, like anyone under stress you may not have been well understood, that the there were misunderstandigs and that is why there are reports are misleading.

When you accuse someone (esp professiopnals ) of lying - it hurts your case, if you use the word misunderstanding - it is less hostile but gets the point across.

Think of times when you may have seen people confront each other:

You lied about this! .......first reaction from the other person is , I did not, you have it all wrong! and the defenses/barriers go up for anything good to happen.

You cant prove they lied - because it was the doctor's opinion at the time (a screwed up opinion).

But you can prove your reactions and determination to confirm celiac were based on lab results and your own medcial history...and your love for your child. Not Munchausen. I do find it interesting that, if they are so concerned that you have this disorder, they have not had you seen by a psychiatrist to validate their claims. The only one qualified to make that diagnosis is a psychiatrist........ a pediatrician can ask that it be investigated ....but to make the diagnosis is reckless, damaging to all and without merit in this case.

At least that is my thoughts, I may not be right, but I am still falbergasted that - in spite of test results and the fact that you were referred - this happened!

[CDFAMILY]

Very good point 2Kids

Using non accusing words is the best route to take now except at home and here of course then anything goes. I do hope your visit to the doctor goes well and this will soon become a distant nightmare!

This may be a little late but I do hope you take any and all blood tests etc with you today and would question any blood work that is low normal and high normal because they all can tell a story if the doctor is smart.

Here are some areas to look at for clues

Does your son have any other bloodwork that points to celiac for example

Low normal ferritin

Low Lymphocytes

High TIBC

Low Iron

Low normal Vitamin D

Low vitamin K

Low B12

Below is a pubmed link in case he does have low ferritin.

Open Original Shared Link

An AGA IgG is the least specific of all Celiac tests but people have still been diagnosed with Celiac with only that as a positive. Did he have the tTG IgA and the Total IgA test. If the total IgA is low that means the other tests are useless and the IgG is the most accurate.

Just posted this about IgG and thought you might want to read it too,

"Hadjivassiliou says, in "Gluten sensitivity as a neurological illness"

"IgG anti-gliadin antibodies have been the best diagnostic marker in the neurological population we have studied. IgG anti-gliadin antibodies have a very high sensitivity for celiac disease but they are said to lack specificity. In the context of a range of mucosal abnormalities and the concept of potential celiac disease, they may be the only available immunological marker for the whole range of gluten sensitivity of which celiac disease is only a part. Further support for our contention comes from our HLA studies. Within the group of patients with neurological disease and gluten sensitivity (defined by the presence of anti-gliadin antibodies) we have found a similar HLA association to that seen in patients with celiac disease: 70% of patients have the HLA DQ2 (30% in the general population), 9% have the HLA DQ8, and the remainder have HLA DQ1. The finding of an additional HLA marker (DQ1) seen in the remaining 20% of our patients may represent an important difference between the genetic susceptibility of patients with neurological presentation to those with gastrointestinal presentation within the range of gluten sensitivity.

Both Dr. Fine, a leading celiac disease researcher, and Dr. Hadjivassiliou have identified the DQ1 marker as predisposing one to a non-celiac gluten sensitivity...which can include all the same symptoms and risks as celiac disease, except there will usually not be villous atrophy on biopsy which is required for a celiac diagnosis. (Dr. Fine suggests DQ1 may be seen in 1-2% of biopsy proven celiac disease.)"

Wishing you a quick resolve to this horrible situation and many prayers.

Celiac Mom