Shocking Story

[Gcbec]

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!

You are correct I think 95% of everyone here could be in the same situation if they had seen the wrong dr. Unfortunatly for me we did. BUt I am seeing light in my dark tunnel thanks to the supporrt from everyone here. We are not able to get him to dr for this nor are we allowed to suggest this in any way unless a dr actually will diagnose him. I dont think that is too many considering they have not seen him. They took 1 biopsie when they did endoscopy, but I have to ask has this dr ever diagnosed celiac, or the pathologist. If a biopsy was taken and they dont know what they are looking for how will they know if it is celiac.

Thankyou for your support, my son also has multiple problems as well. He was diagnosed with PDD at 3 then that was changed to adhd at 4 now they claim it wasnt adhd? he does have developmental delays as well since baby, and every dr says they think it is something neurological?

Thanks CIndy

[tiredofdoctors]

Cindy, I realize that you are reluctant to contact the media without "backing" from some type of organization. This is the first time I have read your thread . . . . my chest is tight, I can feel my jaw muscles clenching, and I don't know whether to scream or cry, quite frankly. Someone said this earlier, I think Carla . . . you HEAR of these things happening, but you don't actually hear it from the person to whom it happened. This is simply outrageous.

Please e-mail me at bodyworxinc@hotmail.com. I would like to discuss a couple of options with you, but would need your permission to proceed with them . . . .

Hugs and prayers to you,

Lynne

[Gcbec]

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.

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.

Thankyou

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.

I know what you mean, reading everyones responses I cant choke the tears back either. I have been saying I thought it was celiac since last September when they ruled out cancer, I just knew it would be celiac. But then they did endoscopy and it was negative so I just took it that this wasnt it. I think when the dr got the positive IGG he thought the same thing, I had endoscopy done so it couldnt possibly be celiac. Anyway, I am praying every day and every night that they will come home soon. I question all the time what things I could have done differently but that isnt going to change anything now. When I say that I mean differently, like when I thought it was celiac we should have just made the long trip to NYC instead of going the quick way to local GI Doc that peditrician sent us to. Which brings me to another point, eveyone make sure you go to a qualified celiac dr not just any GI dr. I am not saying that there is not good GI dr's out there I am just saying make sure they now how to treat & recognize celiac.

Thanks Cindy

[Nic]

They took 1 biopsie when they did endoscopy, but I have to ask has this dr ever diagnosed celiac, or the pathologist. If a biopsy was taken and they dont know what they are looking for how will they know if it is celiac.

If the biopsy shows negative for Celiac see if you can insist that they send it to the lab at Columbia University. My doctor did this because my son's original lab said it was a negative. If you e mail me I will tell you the name of the person at the lab that my doctor said is the best.

donahueni@yahoo.com

Nicole

[Gcbec]

If the biopsy shows negative for Celiac see if you can insist that they send it to the lab at Columbia University. My doctor did this because my son's original lab said it was a negative. If you e mail me I will tell you the name of the person at the lab that my doctor said is the best.

donahueni@yahoo.com

Nicole

I am trying to get into Columbia, thats where I should have went to begin with. The test was done last september do you think it could still be sent?

[Guest nini]

also according to most Celiac experts, ONE biopsy taken was not enough. There needed to be a minimum of 6-8 samples taken in order to get a better sampling rate. (even though I personally disagree with using biopsies as the only way to dx Celiac) if they only took one then they were most def. incomptetent. Damage can so easily be missed even with 6-8 samples, but you stand a better chance. Also, inflammation seen by the Dr. during the scope is also NOT NORMAL and indicitive of Celiac. This whole situation just stinks and I hope you get some resolution soon and get your children back asap.

[Gcbec]

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

Thanks Kendra,

I know it is so scary and shocking. I think its a good time to ask this question, How many people here go to dr with complaints and symptoms that they see at home, but when they are in Dr office they are not visable. In this I mean, stomache aches, headhaches ect. What sympotoms does everyone tell the dr their children are having, and what symptoms has the dr actually witnessed in the office for the 10-20 minutes they are seen? And has anyone ever read back what the dr wrote you said? I went in with complaints of my son being very tired, severe stomache pain, headhaches, big poops and cranky. What was written in report is I said, " Fatigue Pallor, Shivers, Malaise irritability, subclinical hypothyroidism and headaches" now, you tell me who is lying?

[Guest nini]

oh yeah, when I took my daughter to the ped. gi, when he palpated her tummy and she just giggled cos it tickled instead of screaming like she normally did at home if we just brushed against her belly... I know he wrote that I was "overimaginative" because I got a copy of that report from my daughters ped. later. I know he didn't believe me when I claimed that she had diarrhea alternating with constipation (but NEVER a formed stool)... he said that just wasn't possible. Um he wasn't the one changing her diapers or trying to potty train her. And this guy was supposed to be one of the Celiac experts in this area and he was so dismissive of me it wasn't even funny. When I asked him about her ftt and being underweight he told me that she was just petite and a perfect weight for a petite girl. (not according to the chart at her ped.s office, she was only in the 5th to 10th percentile for her age) 6 months after I put her on the gluten-free diet she was in the 50th percentile! Some of these Dr.s are just IDIOTS and it's a rare one that isn't. I'm sorry you got stuck with an idiot and that the ramifications of this are so serious.

[Gcbec]

also according to most Celiac experts, ONE biopsy taken was not enough. There needed to be a minimum of 6-8 samples taken in order to get a better sampling rate. (even though I personally disagree with using biopsies as the only way to dx Celiac) if they only took one then they were most def. incomptetent. Damage can so easily be missed even with 6-8 samples, but you stand a better chance. Also, inflammation seen by the Dr. during the scope is also NOT NORMAL and indicitive of Celiac. This whole situation just stinks and I hope you get some resolution soon and get your children back asap.

Yes it is horrible, and the more I think about it the more I wonder. He could never explain the inflamation he told us we would have to keep an eye on it. I wonder if he would speak to me about this and see if he will help get my son diagnosed. The worste part about this is the Dr that accused us, has contacted all the dr's and although most that know us didnt listen and stayed on our side there were some she was able to lie to and get them to think they did something wrong. She called up our GI dr in NC and told her that she is an expert in Munchausen Syndrom and I have it (did I mention she is on a pediatrician), then instead of asking her opinion on my sons past medical history all she wanted to know is if a test was supervised. She was told it was preformed in hospital but there was no guard or dr there in same room the whole 24 hours. This was a ph probe test in her report she wrote " treating physicians stated test preformed was unsupervised study and results could be tampered with" I swear this Dr is off her rocker, and I hope with everyones help she will be exposed to media and have to answer to all the lies she told.

CIndy

[Canadian Karen]

I can remember when Rhiannon had her constipation issues when she was younger (her bowels just plain didn't work, and she got impacted quite a few times). Anyway, one time, she was in so much pain, every 10 minutes, she would be screaming in pain to the point of almost waking the whole neighbourhood. But in between the bm urges that caused the pain, she was okay until the urge hit again. We took her to emerg, and while in a room, someone came in while she was "in between" the urges, and she was smiling and hugging me, and the nurse said, "She doesn't look like she belongs here.......", I said "Hey, just wait a few minutes, you'll see.........." Five minutes later, she was screaming blue murder writhing in pain. Just goes to show you, the medical establishment doesn't always see what we see........

[Guest nini]

I just went back and pulled out the letters that the idiot gi dr. sent to my daughter's ped. While the ped. charts put her in the 5th to 10th percentile, HIS chart put her in the 60th???? I am trying to figure out where he got that from? Also he put in statements like "mother claims" "but not visible on examination" ACK... again I shudder to think this could have happened to me. At least he did record that I had recently been dx'ed with Celiac.

[Gcbec]

oh yeah, when I took my daughter to the ped. gi, when he palpated her tummy and she just giggled cos it tickled instead of screaming like she normally did at home if we just brushed against her belly... I know he wrote that I was "overimaginative" because I got a copy of that report from my daughters ped. later. I know he didn't believe me when I claimed that she had diarrhea alternating with constipation (but NEVER a formed stool)... he said that just wasn't possible. Um he wasn't the one changing her diapers or trying to potty train her. And this guy was supposed to be one of the Celiac experts in this area and he was so dismissive of me it wasn't even funny. When I asked him about her ftt and being underweight he told me that she was just petite and a perfect weight for a petite girl. (not according to the chart at her ped.s office, she was only in the 5th to 10th percentile for her age) 6 months after I put her on the gluten-free diet she was in the 50th percentile! Some of these Dr.s are just IDIOTS and it's a rare one that isn't. I'm sorry you got stuck with an idiot and that the ramifications of this are so serious.

Yes I know,, They even claim my son was in 50% for weight, but on dr's reports they plotted him and 10-25% weight. WHich I know isnt terrable but his height he is 75% so we have a long skinny boy. All reports show very thin no body fat and some other long term I dont remember. Man I miss my babies so much, this is helping though.

I just went back and pulled out the letters that the idiot gi dr. sent to my daughter's ped. While the ped. charts put her in the 5th to 10th percentile, HIS chart put her in the 60th???? I am trying to figure out where he got that from? Also he put in statements like "mother claims" "but not visible on examination" ACK... again I shudder to think this could have happened to me. At least he did record that I had recently been dx'ed with Celiac.

You see what I mean.. this is what I am saying. And my question to the government is this.... How can you pick and choose 1 mother to do this to and not everyone. If I am guilty we are all guilty, and we know that is not the case here but it is true. Am I the only mother that ever tried to get her son tested, and they claim it is so I CAN HAVE ATTENTION!!!! OMG now I am getting so pissed off, you have proved my point... How can I or any of us be judged based on what a dr is writting that we have really no way of knowing. I didnt ask what are you writtig, and read it and make them correct what they write. I go in to dr and tell what is happening at the present time what they do with it I dont know. THen come home and tell family they did nothing today, and have them scream at me what are they waiting for him to die? We have teachers, family neighbors, even waitresses at Freindly's resturaunt that have seen him sick, yet they say I am lying. Where do they get off, and where are our rights.

[Guest nini]

hon, I truly truly feel for you and am just as angry... we have GOT to do something about this, and yes, I even had the Munchausen accusation thrown at me too... it's ridiculous what they will say. For YEARS before my dx, Dr.s thought my complaints were "all in my head" and kept sending me to psychiatrists who would examine me and ask "why are you here?"

It galls me that they can accuse a mother who is trying to help her children, of just trying to get attention for herself. Insane doesn't even begin to describe it. Hang in there, keep the faith and while I can understand your reluctance to get this to the media, SOMEONE needs to bring it to the attention of the media and that someone needs to be someone on your side, not on the side of cps. You wouldn't want someone from cps leaking the story to the media and therefore potentially making it much worse for you. Have you contacted a local support group yet?

[Gcbec]

hon, I truly truly feel for you and am just as angry... we have GOT to do something about this, and yes, I even had the Munchausen accusation thrown at me too... it's ridiculous what they will say. For YEARS before my dx, Dr.s thought my complaints were "all in my head" and kept sending me to psychiatrists who would examine me and ask "why are you here?"

It galls me that they can accuse a mother who is trying to help her children, of just trying to get attention for herself. Insane doesn't even begin to describe it. Hang in there, keep the faith and while I can understand your reluctance to get this to the media, SOMEONE needs to bring it to the attention of the media and that someone needs to be someone on your side, not on the side of cps. You wouldn't want someone from cps leaking the story to the media and therefore potentially making it much worse for you. Have you contacted a local support group yet?

I dont know if there is one, I dont mean to sound stupid but how do I find out? (support group here) Yes I was not acutaully accused when they were trying to find a diagnoses but thinking back I am sure that is what was going on. I was acussed of taking too much coumadin becasue my inr wouldnt go down, I left that dr and 3 months later found out it was celiac. When I called him and told him he actually apologized for ever doubting me and said he made a mistake not finding it. Made sence my # was so high because of the vitamin k issue or something like that. My sister in LAw that has my children is saying I have Munchausen because it took dr's so long to come up with diagnoses, she claims she felt I had msbp for a long time. She has never bothered to even check what celiac is, and has no idea of the pain and torment I went through before finally getting diagnosed. As I am sure everyone here has been through. I am trying to contact national celiac association and see if they will get involved. Ill let everyone know what happens.

Cindy

[Guest nini]

Open Original Shared Link

link to Celiac Support Groups in the US

I am a member of CSA celiacs... it's a great group...

https://www.celiac.com/st_main.html?p_catid=8

I just had another thought... Contact Dana Korn of R.O.C.K. (raising our celiac kids) she's really good about returning e-mails or phone calls if the situation warrants it. She might have some advice for you.

[Cheri A]

Just read this whole thread and I am simply shocked and angry!! I wish I could do something for you! I don't have copies of what is in my dd's files, but I'm sure it's filled with "mother claims xyz. My dd has not been officially diagnosed w/celiac disease either but is doing so much better since going gluten-free. I really related to Karen's post about her dd being fine in the ER one minute and then screaming in pain the next. That was the way my dd was too!

[ravenwoodglass]

My heart goes out to you. This almost happened to me also when I lived in another state. After my DS ped diagnosed him with failure to thrive he told me to expect that CPS would soon be knocking on my door and I ran to another state. I strongly agree with getting the enterolab tests done and also getting the media involved ASAP. I wonder how many other families have been in this situation. I am still hallmarked as mentally ill by the medical group in my Upstate NY town. You are not alone and I am so glad you found this board there are many here that will be terrified by your story. How many with young children are now going to be afraid to get help for them? I am praying for you through my tears and wish I could be of more help.

[Guest BERNESES]

Sending prayers your way.

[Gcbec]

Open Original Shared Link

link to Celiac Support Groups in the US

I am a member of CSA celiacs... it's a great group...

https://www.celiac.com/st_main.html?p_catid=8

I just had another thought... Contact Dana Korn of R.O.C.K. (raising our celiac kids) she's really good about returning e-mails or phone calls if the situation warrants it. She might have some advice for you.

Ok I got a support group, thankyou.. I contacted suffolk county celiacs a branch of gig and there is a meeting tonight and my husband and I are going to attend.

[Guest nini]

Ok I got a support group, thankyou.. I contacted suffolk county celiacs a branch of gig and there is a meeting tonight and my husband and I are going to attend.

good for you, let us know how it goes... remember, this is a very vocal bunch of Celiacs and Celiac parents and we can get your story out there when you are ready...

[Gcbec]

My heart goes out to you. This almost happened to me also when I lived in another state. After my DS ped diagnosed him with failure to thrive he told me to expect that CPS would soon be knocking on my door and I ran to another state. I strongly agree with getting the enterolab tests done and also getting the media involved ASAP. I wonder how many other families have been in this situation. I am still hallmarked as mentally ill by the medical group in my Upstate NY town. You are not alone and I am so glad you found this board there are many here that will be terrified by your story. How many with young children are now going to be afraid to get help for them? I am praying for you through my tears and wish I could be of more help.

I know what you are saying,, I have not been able to stop the tears since I began reading the overwhelming support here. My God when will these people open there eyes. I think I need to get my story out there just so dr's can be taught a lesson that they are not GOD they are only practicing medicine. And everyones prayers is the greatis help. Thankyou all..

How do you go to dr with fear they may suspect you again?

[ravenwoodglass]

I have just spoken with my DS and he gave some good advice. When he became ill in the service we were told to contact our Senator for assistance. Senator Schumer or another could be of great help to you with this. Contact their office today.

[Gcbec]

good for you, let us know how it goes... remember, this is a very vocal bunch of Celiacs and Celiac parents and we can get your story out there when you are ready...

I know, I just want to make sure all the information and support is there to ensure a positive outcome instead of negative. I dont want to risk loosing my children forever, although that is what this dr is trying to acomplish anyway so what do I have to lose. I love this vocal Bunch of Celiacs..

[Guest Robbin]

I CANNOT BELIEVE THIS. This is the most shocking -heartwrenching story on here yet. I am praying so hard for you. I cannot imagine the anguish you go through. I had problems with my oldest son and his pediatrician-I was accused of "wasting" drs. time and my son was "trying to get attention" --He had type 1 diabetes and his blood sugars were over 500 when they finally agreed to test him for it because I insisted. How easily it could have happened to me then. Now, my youngest is having so many problems and everytime I take him to see the dr. I get a sarcastic attitude, so I am changing drs. I think they think I am starving him or something, the last time I went the dr. said only Zack should answer his questions and asked me to leave the room! This kid is so shy he ended up saying to him -"mom already told you the problem"- I also had to fight for homeschooling with a school system in 1996 when I homeschooled my oldest child- Our whole system is riddled with corruption on every level.

Does your sister in law and her husband have children? Is there an ulterior motive on their part to take your children? You have it coming at you from all sides and hopefully all of us here together can level the playing field and get your babies back. I am crying as I write this in anger, sympathy and frustration for you. Keep your faith. We are all praying hard for you.

Just had an idea-Public Citizen -started by Ralph Nader might be able to help you. Check them out on the web-maybe they have a legal outreach-I know they have reports that they issue on "Bad Drs". Take care, and keep us posted.

[Gcbec]

I have just spoken with my DS and he gave some good advice. When he became ill in the service we were told to contact our Senator for assistance. Senator Schumer or another could be of great help to you with this. Contact their office today.

That is s great idea, but what do I tell them? I dont think it is that easy to get into them. Our Senator is Hilary Clinton.