Topic: WILL NOT BELIEVE WHAT THE ER DID TO MY DAUGHTER AND I! ACCUSED OF HAVING MUNCHAUSEN!!
echostef
Unregistered
posted
I HAVE to post this, because I am so appalled, irritated, angry, shocked, and disgusted at what my local Emergency Room has done to my daughter and myself!!!!
My 8 year old daughter and I both have Lyme and Babesia(I have Bart as well). BOTH of us have positive Western Blots, mine from LabCorp and hers from Igenex. She also tested + for Babs through Igenex.
We have both been ill for about a year and a half. She has been so ill that she was unable to attend the last half of her 2nd grade year at school, and she will be continuing with homebound schooling for her 3rd grade year, since she is too sick to attend regularly.
Her babesia causes her to have terrible, severe nightly headaches. Being a healthcare worker myself, we have a system where she rates her headache pain on a 1-10 basis, depending on severity, so I know how much pain medication to give her.
Her headaches are usually about an "8" right before bed. I have always told her that, should her headache ever reach a "10" status, meaning unbearable, that I would take her to the ER and have them give her IV pain meds. Although she is deathly afraid of needles.
Well, her headache reached a "10" last Sunday. She begged me to please hurry and take her to the hospital because she felt like she was dying, even knowing that she was going to have to get an IV. She was in so much pain that I took off out the door with no shoes on either of us...
We arrived at the ER and, after waiting around for what seemed like forever, the triage nurse called us back. I tried to explain to her that my daughter had Lyme and Babesia and needed pain meds for her severe headache.
Her reply was "Bab-what? I've never heard of that." Of course she hasn't. Her and 99% of the medical field.
Of course, when I first became ill, I was misdiagnosed 10 times before I actually figured out on my own what I had.
When my daughter starting having symptoms identical to mine, her physician tried to convince me that she a "little bit of 'I want to stay at home with my sick mom' syndrome."
He refused to even consider that she may have Lyme. I ended up taking her to my LLMD, who thankfully ordered her Igenex testing.
Needless to say, I have had very little faith in the general healthcare system for a long time now.
Anyway, I told the nurse that I didn't expect her to understand anything about my daughter's illness. She asked my daughter how she felt and my little girl, holding her head in her hands, cried, "My headache is a 10. I can't stand it."
The nurse asked me if I had given her tylenol and I replied, not very nicely, that tylenol does absolutely nothing for a babesia induced headache.
We were taken into a room and they sent an EMT in to start her IV. I explained to him that my child was very scared of needles, and, as she has her blood drawn every two months per her LLMD, my husband and I always have to restrain her when she is being stuck, because she absolutely shrieks when she sees a needle.
He rolled his eyes and called a nurse into the room with him to help hold her down while he started her IV.
After she got through that, the doc ordered her morphine and phenergan and she began to feel better fairly quickly.
End of story??? That's what I thought! We went home, went to bed, and the drama was over...
Until the next day, when I got a call from Child Protective Services, from a lady stating that a complaint had been filed against me by the ER.
FOR MUNCHAUSEN BY PROXY SYNDROME!!!!
As their complaint read, I brought my shoeless daughter to the ER and instructed her to say that she had a headache. The triage nurse wrote that my daughter responses to her questions were "scripted" and that NO CHILD describes their pain on a 1-10 scale.
The EMT who started my child's IV wrote that I was "emotionless" as I watched my daughter scream as her IV was being started, although I was shaking and sobbing as my child my shreiking.
The ER doc stated that "Lyme Disease IS NOT KNOWN to exist in Texas" and that I was "MAKING UP my daughter's illness in an attempt to draw attention to myself."
He ended by stating that there was absolutely nothing wrong with my child, and that I needed to be investigated for Munchausen by Proxy syndrome.
CAN YOU BELIEVE THIS???? My child has been essentially stuck in bed in horrible pain for the last year of her young life and I am being accused of making it up? For God's sake, I would take every bit of her pain and go through Lyme all over again if I could make her feel better....
The CPS worker came to my house and interviewed me...I gave her all my daughter's positive test results, her medical records, the name of both her and my LLMDS...She spoke with my child also and, by the time she left, told me that my daughter was clearly ill and that the ER was obviously mistaken. OBVIOUSLY!
I am so disgusted by this that I really don't know what to do. Scream, cry, protest? How could anyone POSSIBLY think that I, or anyone else, would take their child to the ER and get her IV narcotic pain meds if she wasn't ill???
I called my own LLMD to tell him about my outrage, and, to my surprise, he told me that his wife had been accused of the same thing!
His wife, children (now grown), and himself have all had Lyme. He told me that, before he knew his whole family was infected with Lyme, that his wife was accused of having Munchausen Syndrome and making his own children ill.
What else can I say?
Now I have to worry that I cannot seek emergency medical treatment for my child without being accused of making up her symptoms?
I thought my daughter contracting Lyme in the first place was the most horrible thing that could ever happen in my life. But it just keeps getting worse and worse....
Bugg
Frequent Contributor (1K+ posts)
Member # 8095
posted
My heart goes out to you. I am so incredibly sorry to hear this. I cannot imagine how angry and upset you must feel.
A woman in my lyme group had a similar experience where her husband was questioned for abusing her because she had welts on her from the co-infections....
Did you see the recent news (in fact I think someone from Texas just posted it on lymenet) that the NIH is going to do a study of tick-borne disease/STARI in Texas? You might want to send a copy of that to the very uneducated doctor....
So sorry you had to go through this....You are a great mom and you did the right thing by seeking ER care for your daughter....
Posts: 1155 | From Southeast | Registered: Oct 2005
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
I'm so sorry you had to go through this. Completely unnecessary and shocking.
Some doctors really have something up their you-know-what. It must take a lot of ego to be that blinded from the truth.
I hope the caseworker's evaluation afterwards brought some sort of vindication for you.
It enrages me; no mother should have to go through those accusations when she is clearly doing the right thing for her daughter. I hope your daughter gets better! I believe this illness CAN be treated and get better.
Posts: 4590 | From Midwest | Registered: Jun 2008
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I am so sorry you and your daughter had to go through that.
-------------------- "We must be willing to get rid of the life we've planned, so as to have the life that is waiting for us" - e.m. forster Posts: 921 | From PA | Registered: Jan 2004
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posted
Why do so many of us get treated like this?? I'm so sorry...I can't even imagine going through what you did the other night.
When you and your daughter are better, you both can use all the extra energy to fight the lyme battle!!
The only good thing about being treated like that is it makes us mad as heck and all the more up for the fight. I know I'll never forget how I was treated which just makes me determined to try to make a difference so that others may be spared in the future....it's good therapy too:)
Posts: 561 | From mass | Registered: Jul 2007
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savebabe
Frequent Contributor (1K+ posts)
Member # 9847
posted
I believe our own President Bush got bit in Texas and infected with lyme disease. What is wrong with these people?
Personally, I live on Long Island where we are swimming in TBD's, but still hospital staff, GP's and other community members have no clue what our ticks are carrying. It just drives me crazy.
I am sorry for your experience, CPS should close your case and move on.
Hope you daughter feels better soon, babs headaches are the worst.
Posts: 1603 | From ny | Registered: Aug 2006
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Echostef-
I agree that is a horrible thing to happen to your family - Sad - Jay
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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posted
Wow! I am so sorry to hear this! I'm shocked! I have a 4 year old daughter, who has Lyme and Babesia also. I have Lyme/Bart/Babs...same as your family. I can't imagine this happening. My prayers are with you!
Posts: 371 | From CT | Registered: Jun 2008
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
SOOOOOOOOOOOO sorry you had this happen.
Darn DUCKS! Darn EVIL DUCKS!
Just so you know.. the most stupid and evil of all the ducks go down the Munch road because they are too STUPID to read... and/or too lazy.
You are far from the first one with Lyme to have this traumatic experience... bless your heart... and you won't... unfortunately... be the last.
Anything you can do to help educate the IDiots would be a start toward getting them out of their holes and into the light.
This one sounds too stupid to train or educate... and much too arrogant to bother with... but others in that hospital might be able to be salvaged?
Once you calm down.. if you ever do.. and it will be a hard thing to do....
You might want to make a VERY polite call to the hospital administrator... and tell them of your experience.
Let THEM take a look at what their ducks are doing and saying.
Usually a duck will listen to the boss.. but usually never a patient.
Your Congressional reps may also want to hear the story... and/or your state legislators... and be sure to "cc" that duck if you write your reps a letter about that HORRIBLE treatment you had.
My heart goes out to you dear.. and your little one too.
posted
This is surreal -- I have no ideas about what to do next! That said, maybe legal-minded people could PM you with some ideas -- this is just nuts.
-------------------- My biofilm film: www.whyamistillsick.com 2004 Mycoplasma Pneumonia 2006 Positive after 2 years of hell 2006-08 Marshall Protocol. Killed many bug species 2009 - Beating candida, doing better Lahey Clinic in Mass: what a racquet! Posts: 830 | From Mass. | Registered: Aug 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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This might be a start to help educate those at that hospital:
Infectious Diseases Division, Massachusetts General Hospital, Boston 02114, USA. [email protected]
In the past decade, cases of babesiosis in humans have been reported with increasing frequency, especially in the northeastern United States.
Babesia microti (in the United States) and bovine strains (in Europe) cause most infections in humans. Most cases are tick-borne, although cases of transfusion-associated and transplacental/perinatal transmission have also been reported.
Factors associated with more severe disease include advanced age, previous splenectomy and immunodeficient states. Symptoms include high fever, chills, diaphoresis, weakness, anorexia and headache.
Later in the course of the illness, the patient may develop jaundice.
Congestive heart failure, renal failure and acute respiratory distress syndrome are the most common complications.
Therapy using the combination of quinine sulfate and clindamycin was the most commonly used treatment; however, atovaquone suspension plus azithromycin was recently reported an equally effective and less toxic therapy.
Exchange transfusion, together with antibabesial chemotherapy, may be necessary in critically ill patients.
BABESIOSIS: AN UNDERDIAGNOSED DISEASE OF CHILDREN.
Krause PJ, Telford SR 3rd, Pollack RJ, Ryan R, Brassard P, Zemel L, Spielman A.
Department of Pediatrics, University of Connecticut School of Medicine, Farmington.
Babesiosis is a malaria-like illness caused by the intraerythrocytic parasite Babesia microti and is transmitted by the same tick that transmits Borrelia burgdorferi, the causative agent of Lyme disease.
Babesiosis is well recognized in adult residents of southern New England and New York but has been described in only five children.
To determine whether children are infected with B microti less often than are adults, a prospective serosurvey was carried out on Block Island, RI, where babesiosis is endemic.
Randomly recruited subjects completed a questionnaire and provided a blood sample.
Antibodies against B microti and B burgdorferi were measured using a standard indirect immunofluorescence assay and enzyme-linked immunosorbent assay, respectively.
Of 574 subjects, 9% tested positive for B microti, including 12% of the 52 children (7 months through 16 years) and 8% of the 522 adults (not significant, P less than .6).
Although babesiosis had not been diagnosed in any of the Babesia-seropositive subjects, 25% of the children and 20% of the adults reported symptoms compatible with this infection during the previous year.
Of the 6 children and 45 adults seropositive for B burgdorferi, 17% and 14%, respectively, were also seropositive for B microti.
It is concluded that children are infected with B microti no less frequently than are adults and that this infection is underdiagnosed in all age groups.
Physicians who practice where Lyme disease is endemic should become familiar with the clinical presentation and diagnosis of babesiosis, both in adults and children.
[Epub ahead of print] - No abstract available. - Links
FATAL TRANSFUSION-TRANSMITTED BABESIA MICROTI IN THE MIDWEST.
Blue D, Graves V, McCarthy L, Cruz J, Gregurek S, Smith D.
Indiana University Medical Center, Clarian Health, and the Indiana Blood Center, Indianapolis, Indiana, USA.
PMID: 18694463
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you might be able to find more through Indiana press accounts or the hospital staff, authors.
The American Red Cross, too, may be a big help as anyone with a history of babesia is not allowed to donate blood.
I Googled: Babesia "American Red Cross" - 13,700 hits.
------
It is about time hospital employees - the ones we pay for our care - learn about this. It's too bad that we have to work so hard to learn about our own (and family members') illness and then to have to educate doctors . . . .
Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
What a horrible story!! So sorry you and your daughter had to go through such a thing.
Posts: 1366 | From Southeast | Registered: Sep 2005
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posted
I'm so sorry this happened. Yes, it's an outrage!!! Has it happened before to Lyme patients... OH YES.
We have a former prominent member of Lymenet who cannot post here anymore. She is staying away to protect her child. [she was not anonymous here]
Thank goodness you had positive test results for her!!!!
I wish there was a way to sue hospitals for falsely accusing someone of Munchausen's. Maybe you should check into it.
I sure hope you both have a full recovery VERY soon. You deserve it.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
What a terrible story. I guess it would help to educate this E.R. in case you go again, and I would keep a handy file folder with pertinent records of your daughter, her tests and treatment and LLMD's name so next time you go to the E.R., if you do, you have some backup.
More to the point, your daughter's terrible headaches. I had crushing "lyme/babesia" headaches about 2-3 years into lyme. They would lay me up twice a week in such pain. Hyperbaric oxygen treatments have been very helpful to me (I'm a good responder) but they are known to help migraines, anyway. I have a mild hyperbaric chamber. The first time I tried one (down in Atlanta) I didn't get one for 18 days. By the time I got my own chamber, I found if I did get a migraine, the chamber would help take it away. It is terrible for your little girl to be in such pain and I recommend looking into hbot. Many docs have these mild chambers. PM me if you need more info.
Posts: 2276 | From united states | Registered: Jun 2004
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posted
So sorry for you! but at same time not surprised.
I wonder where in Texas this happened.
This is reason I have explored the alternative route. The other way is fraught with expense and misinformation and uncaring people.
Since I've been taking plenty of Vit C and magnesium (Naturally Calm by Peter Gillham) I haven't had the curl up in a fetal curl, stomach wrenching migraines.
Hope this might help. Good luck on educating the ducks though... Their hubris is usually blinding especially if you don't have their same credentials. Even if it comes from a respected, medical source, I've had them attack because "who do you think you are?, a doctor??"
Actually I think some of people here are beyond that. We've seen that the emperor has no clothes. Evident from incidences as your unfortunate one and the fact that we have a low infancy survival rate. I'm sure you've seen the stats on life expectancy rises when doctors/hospitals go on strike...
Posts: 78 | From SW | Registered: Jul 2008
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adamm
Unregistered
posted
I am so sorry to hear this,
and hope with all m heart that nothing comes of it.
It is likely, however, that the personnel at this hospital were told by the authorities to
register
such a complaint whenever a parent brings a child in to be treated
for Lyme sx--we are, quite literally, up against military men,
and they are using psychological warfare tactics.
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Okay. Now this is the important part.
What does your / your daughter's medical file say about this?
From what I know, NOTHING can ever be deleted or erased from your file. EVER.
A letter of correction can go in, but it will not erase the error.
So - you need to prevent this from being in your charts.
I think you do need to see an attorney to be certain that your chart is clear and that this will NEVER happen again.
quote:Originally posted by echostef: How could anyone POSSIBLY think that I, or anyone else, would take their child to the ER and get her IV narcotic pain meds if she wasn't ill???
Because some people do exactly that. That's why.
Perhaps in the future, if you need to take your daughter to an ER again for her pain or other emergency, you should bring her positive test results and her LLMD's contact information with you.
It may (or may not) make a difference with the attitudes of the ER staff if you have some EVIDENCE that the child is in fact sick.
I understand this was a dire emergency and you didn't have time to go dig out her records. So make copies and keep them in the car or near the door where you can grab them on the way out.
This time, they at least did treat her pain before they called CPS. Next time, they may refuse to, and still call CPS.
Thank you for posting about this. I can't even imagine how you must feel.
Posts: 21 | From Texas | Registered: Jun 2008
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Dawnee
Unregistered
posted
Ditto to what Spiderlily said.
I'm so sorry you and your daughter got treated that way. And how scary to have them sic CPS on you like that!
Makes me so mad!!!
Unfortunately, that kind of treatment from ER and most any duck has become almost expected by most Lymies.
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
If anyone ever tries to pull that crap again, at least you already have a CPS investigation clearing you. I would not be afraid of taking her for treatment in the future, because of that. They already know and have on record it is NOT Munchausen's by proxy.
Definitely file a complaint with the hospital administrator. Chief of Staff, if it was a doctor who filed this.
I would also personally go down there and confront the doctor in a non threatening, educational manner. He will probably be mortified, and think twice the next time.
By the way, if they thought your daughter wasn't really sick, what the hell were they giving her morphine for???? Wouldnt' that make THEM subject to malpractice? Giving morphine to a seven year old who doesn't need it can't be ok!!!
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Tracy -
very nice quote: Courage doesn't always roar. Sometimes courage is that little voice at the end of the day that says: "I'll try again tomorrow."
posted
I'm sorry this happened to you & your daughter.
I haven't been accused on MBP, but we have been turned over to CPS by the school.
I requested copies of Jordan's records when I could tell a difference in the way doctors treated him. An ENT had written in his file that I thought Jordan was sick but he really wasn't. The ENT cultured Jordan's nose and found a strep infection.
That's when I decided I don't care what anyone else says, I know Jordan was sick and I would keep looking for answers.
-------------------- Peggy
~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
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quote:Originally posted by Tracy9: Definitely file a complaint with the hospital administrator. Chief of Staff, if it was a doctor who filed this.
I would also personally go down there and confront the doctor in a non threatening, educational manner. He will probably be mortified, and think twice the next time.
By the way, if they thought your daughter wasn't really sick, what the hell were they giving her morphine for???? Wouldnt' that make THEM subject to malpractice? Giving morphine to a seven year old who doesn't need it can't be ok!!!
Amen to that!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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echostef
Unregistered
posted
Many thanks for everyone's posts.
Yes, I am filing a complaint with the Hospital Administrator. My LLMD also recommended, with a few well- put obscenities, that I file a large lawsuit against the doctor and hospital.
He is just as appalled as I am. He is all too familiar with my daughter and I and the hell we have endured over the last year. As many of you can relate to, especially those of us Lymies who also have LD+ children.
In fact, he has asked me to speak in front of a group of ER docs and nurses next month regarding the immense lack of knowledge that the healthcare field has regarding Lyme Disease.
He said that he has been having a great deal of difficulties with the ERs in the area who are trying to discount his Lyme patient's diagnoses and convince his patients that he doesn't know what he's talking about. Again, with the "Lyme doesn't exist in Texas" thing. I am SO tired of hearing that!!!
The CPS worker that came to my home told me the case has been closed. She has noted in the file that this is not the first instance in which parents have been accused of having Munchausen when their child is suffering from LD. (I believe she spoke with my LLMD after I gave her his contact info).
In the meantime, as much as it absolutely disgusts me to have to do, I have made copies of all my daughter's medical records from her LLMD, as well as her + Igenex results, to carry with me, just in case I have to defend myself again against some other ignorant doctor.
And yes, as soon as I get to feeling better, I am going to use my healthcare background and all the contacts I have in the Dallas/ Fort Worth medical field to make sure that this NEVER happens to another parent or child suffering with Lyme.
It might take the rest of my life, but these kind of horrendous, erroneous accusations should never be something that an already seriously ill family has to endure.
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Beverly
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Member # 1271
posted
What an awful experience!!!! So sorry you had to go through that!
Many times my son was sick enough to go to the ER, but we didn't go.....because of exactly what happened to you. Those were my fears and I didn't want to go through it.
I think it's awful how much pain we lymies have to endure, that part of this illness makes me wish we all had cancer instead.. then we would get better treatment.
Hope things get better for you both.
-------------------- God Bless You! Everything..is just my opinion. Posts: 6638 | From Michigan | Registered: Jun 2001
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bettyg
Unregistered
posted
quote:Originally posted by echostef:
Yes, I am filing a complaint with the Hospital Administrator.
My LLMD also recommended, with a few well- put obscenities, that I file a large lawsuit against the doctor and hospital.
He is just as appalled as I am. He is all too familiar with my daughter and I and the hell we have endured over the last year. As many of you can relate to, especially those of us Lymies who also have LD+ children.
In fact, he has asked me to speak in front of a group of ER docs and nurses next month regarding the immense lack of knowledge that the healthcare field has regarding Lyme Disease.
STEF, I HOPE YOU TAKE YOUR LLMD UP ON THIS!!! GIVE THEM A BUNCH OF GOOD LYME LINKS: examples:
... dr. burrascano's 05 ILADS lyme guidelines; **********************************************
He said that he has been having a great deal of difficulties with the ERs in the area who are trying to discount his Lyme patient's diagnoses and convince his patients that he doesn't know what he's talking about.
Again, with the "Lyme doesn't exist in Texas" thing. I am SO tired of hearing that!!!
I'D GET A LETTER FROM CASE WORKER ON WHAT WAS PUT IN HER FILE, AND A COPY OF "ALL OF IT" FOR LAWSUIT.
WOULD BE NICE IF YOU COULD FIND OUT WHO ELSE THIS HAPPENED TO FOR A CLASS LAWSUIT!!
The CPS worker that came to my home told me the case has been closed. ************************
She has noted in the file that this is not the first instance in which parents have been accused of having Munchausen when their child is suffering from LD. ****************************
(I believe she spoke with my LLMD after I gave her his contact info).
In the meantime, as much as it absolutely disgusts me to have to do, I have made copies of all my daughter's medical records from her LLMD, as well as her + Igenex results, to carry with me, just in case I have to defend myself again against some other ignorant doctor.
And yes, as soon as I get to feeling better, I am going to use my healthcare background and all the contacts I have in the Dallas/ Fort Worth medical field to make sure that this NEVER happens to another parent or child suffering with Lyme.
It might take the rest of my life, but these kind of horrendous, erroneous accusations should never be something that an already seriously ill family has to endure.
STEF, HIPPA law allows us to have OUR VERSION of things put into our medical files!!!
i didn't have your example, but ER dr. wrote i tripped over my shoes when i fell in hospital; it took me 4 months involving getting CEO/PRES. of hospital involved, and he sent me a brief 1-sentence correction ... still was WORDED TERRIBLY!!
I also had complaints on a knee/hip surgeon for lying to me, etc. i typed up my notes; head of medical records sat down with this dr. and he DENIED everything.
bottom line: his notes and MINE are in my medical file. IF ANYONE OUT OF CLINIC ASKS FOR THEM, MINE WILL BE SENT TOO!!!
so i'd get your notes added to hospital's ER records too and get copies of caseworker's file on you/daughter!!
BEST WISHES TO YOU I'm so sorry this happened.
if you do a SEARCH AT TOP and type munchusens in and show medical, subject line, leave everything else blank; hit send ... you can read what happened to others in your situation here!
this happened to wisc. author, PJ LANGHOFF, and she talks about it in i believe her 1st lyme book!!
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posted
What a terrible story. At a time when you really need the medical help. Am wondering if your LLMD can help out in the future at all in any way?
One idea: what about getting the hospital some info about Lyme/co's in Texas? I just checked the support groups listed for Texas. Three are listed. Maybe some info could be gathered from them and others about the facts of these diseases there and given to the hospital admin.
Also, it might be easier emotionally for you if some other Texan Lyme activists help out with this. Maybe to also write letters to the hospital on your behalf. Sometimes it hurts real bad but it can be an opportunity to educate people, once we get through the emotional shock.
Posts: 13116 | From San Francisco | Registered: May 2006
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pmerv
Frequent Contributor (1K+ posts)
Member # 1504
This is an issue patients in Texas should get together and seek a solution for.
-------------------- Phyllis Mervine LymeDisease.org Posts: 1808 | From Ukiah, California, USA | Registered: Aug 2001
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Cass A
Frequent Contributor (1K+ posts)
Member # 11134
posted
Anyone being accused of Munchausen Syndrome by Proxy should contact the Citizens Commission on Human Rights for help with this.
It is a bogus psychiatric diagnosis that can lead to having your child(ren) taken away from you. Truly.
You are lucky that you got a CPS worker who could see the truth. In one county of California, they actually take kids away and then claim they've taken more than they got to get the Federal $$$$.
This is not a joke--I've seen the documentation.
And, life is not fun for a high percentage of kids in foster care. Being labeled with psychiatric problems and put on multiple drugs, sexual abuse, restraints, seclusion, and worse.
Best,
Cass A
Posts: 1245 | From Thousand Oaks, CA | Registered: Feb 2007
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posted
I think education is definitely called for in this situation, if you are up to it. Maybe enlisting the management and/or patient advocate.
There are a number of published articles and the CDC's own flawed count of cases which show lyme + babesia in TX. Hollar if you need help compiling a short list.
Plus, there are articles dissing Munchausen. Here are a few:
Med Hypotheses. 2005;65(3):440-7.
Munchausen's syndrome by proxy and Lyme disease: medical misogyny or diagnostic mystery?
Sherr VT.
Chronic, tertiary Lyme disease, a vector-borne infection most accurately designated neuroborreliosis, is often misdiagnosed. Infectors of the human brain, Lyme borrelial spirochetes are neurotropic, similar to the spirochetes of syphilis. Symptoms of either disease may be stable and persistent, transient and inconsistent or severe yet fleeting. Characteristics may be incompatible with established knowledge of neurological dermatomes, appearing to conventional medical eyes as anatomically impossible, thus creating confusion for doctors, parents and child patients. Physicians unfamiliar with Lyme patients' shifting, seemingly vague, emotional, and/or bizarre-sounding complaints, frequently know little about late-stage spirochetal disease. Consequently, they may accuse mothers of fabricating their children's symptoms--the so-called Munchausen's by proxy (MBP) "diagnoses." Women, following ancient losses of feminine authority in provinces of religion, ethics, and healing - disciplines comprising known fields of early medicine, have been scapegoated throughout history. In the Middle Ages, women considered potentially weak-minded devil's apprentices became victims of witch-hunts throughout Europe and America. Millions of women were burned alive at the stake. Modern medicine's tendency to trivialize women's "offbeat" concerns and the fact that today's hurried physicians of both genders tend to seek easy panaceas, frequently result in the misogyny of mother-devaluation, especially by doctors who are spirochetally na�ve. These factors, when involving cases of cryptic neuroborreliosis, may lead to accusations of MBP. Thousands of children, sick from complex diseases, have been forcibly removed from mothers who insist, contrary to customary evaluations, that their children are ill. The charges against these mothers relate to the idea they believe their children sick to satisfy warped internal agendas of their own. "MBP mothers" are then vilified, frequently jailed and publicly shamed for the "sins" of advocating for their children. In actuality, many such cases involve an unrecognized Lyme borreliosis causation that mothers may insist is valid despite negative tests. Doctors who have utilized MBP tactics against mothers are likely to be unaware that in advanced borreliosis, seronegativity is often the rule, a principle disagreed upon by its two extant, published, peer-reviewed, Standards of Care. These are guidelines for Lyme disease management--the older system questioning the existence of persistent Lyme and the newer system relying on established clinical criteria. Mothers must be free to obtain the family's preferred medical care by choosing between physicians practicing within either system without fear of reprisal. Doctors and mothers together may then explore medical options with renewed mutual respect toward the best interest of children's health.
Call them the Munchausen mothers. A growing number of women stand accused of deliberately sickening their children for attention from doctors. In an era of patient advocacy and hard-charging moms, there's no end in sight to this hotly contested diagnosis.
And here is a British law professor's report which deconstructs Munchausen diagnosis. This diagnosis got its start in the UK, and spread like a virus to the U.S.
hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
Hi Echostef,
I'm so sorry your family is going throught this.
You may have already done this, but if not...
Go to Medical Records and request a copy of all the information in your daughter's medical file.
They have to give it to you. It's the law.
Make a copy of the report and highlight every error. Go through it sentence by sentence and note the error and what was really said or done.
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
When my daughter started getting sick, she and I were questioned separately many times. I was very afraid I would be accused of this. Fortunately, my daughter was in her teens and could articulate the best she could for cognitive issues.
I'm so sorry you had to go through that. As for being "emotionless" when your daughter gets an IV, a mother's job is to stay calm FOR your child! What good does it do to be hysterical?!
I work at a school and do attendance, and I can tell you a true Munchausen's case. The mother was mentally ill. Her kids continually had "food poisoning". They would miss over 100 days of school, ALL food poisoning.
After watching this for eight years, these kids were FINALLY taken from their parents. I was sure this woman was mixing anti-freeze in their juice, or rat poison in their food.
We had plenty of teachers watching, but no one could make that accusation without concrete evidence, or complaint from the children.
(After being accused myself, I have to be pretty darn sure before accusing someone else).
I'm glad you complained to the administration. Definitely send back up material, and tell them if you have to make a visit to the ER again, you will EXPECT better treatment.
Take care of yourself, mom.
Posts: 2903 | From AZ | Registered: Feb 2006
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posted
I'd say Texans have something to organize around now. If any help is needed from the rest of us, let us know.
Posts: 13116 | From San Francisco | Registered: May 2006
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bettyg
Unregistered
posted
breaking this up below; too important not to be able to use this info against ER folks, etc!! betty
quote:Originally posted by lou:
I think education is definitely called for in this situation, if you are up to it. Maybe enlisting the management and/or patient advocate.
There are a number of published articles and the CDC's own flawed count of cases which show lyme + babesia in TX.
Hollar if you need help compiling a short list.
Plus, there are articles dissing Munchausen. Here are a few:
Med Hypotheses. 2005;65(3):440-7.
Munchausen's syndrome by proxy and Lyme disease: medical misogyny or diagnostic mystery?
Sherr VT.
Chronic, tertiary Lyme disease, a vector-borne infection most accurately designated neuroborreliosis, is often misdiagnosed.
Infectors of the human brain, Lyme borrelial spirochetes are neurotropic, similar to the spirochetes of syphilis.
Symptoms of either disease may be stable and persistent, transient and inconsistent or severe yet fleeting.
Characteristics may be incompatible with established knowledge of neurological dermatomes, appearing to conventional medical eyes as anatomically impossible, thus creating confusion for doctors, parents and child patients.
Physicians unfamiliar with Lyme patients' shifting, seemingly vague, emotional, and/or bizarre-sounding complaints, frequently know little about late-stage spirochetal disease.
Consequently, they may accuse mothers of fabricating their children's symptoms--the so-called Munchausen's by proxy (MBP) "diagnoses."
Women, following ancient losses of feminine authority in provinces of religion, ethics, and healing - disciplines comprising known fields of early medicine, have been scapegoated throughout history.
In the Middle Ages, women considered potentially weak-minded devil's apprentices became victims of witch-hunts throughout Europe and America.
Millions of women were burned alive at the stake.
Modern medicine's tendency to trivialize women's "offbeat" concerns and the fact that today's hurried physicians of both genders tend to seek easy panaceas, frequently result in the misogyny of mother-devaluation, especially by doctors who are spirochetally na�ve.
These factors, when involving cases of cryptic neuroborreliosis, may lead to accusations of MBP.
Thousands of children, sick from complex diseases, have been forcibly removed from mothers who insist, contrary to customary evaluations, that their children are ill.
The charges against these mothers relate to the idea they believe their children sick to satisfy warped internal agendas of their own.
"MBP mothers" are then vilified, frequently jailed and publicly shamed for the "sins" of advocating for their children.
In actuality, many such cases involve an unrecognized Lyme borreliosis causation that mothers may insist is valid despite negative tests.
Doctors who have utilized MBP tactics against mothers are likely to be unaware that in advanced borreliosis, seronegativity is often the rule, a principle disagreed upon by its two extant, published, peer-reviewed, Standards of Care.
These are guidelines for Lyme disease management--the older system questioning the existence of persistent Lyme and the newer system relying on established clinical criteria.
Mothers must be free to obtain the family's preferred medical care by choosing between physicians practicing within either system without fear of reprisal.
Doctors and mothers together may then explore medical options with renewed mutual respect toward the best interest of children's health.
PMID: 15925450 [PubMed - indexed for MEDLINE ------------------------------------------------
Munchausen: Unusual Suspects
Call them the Munchausen mothers.
A growing number of women stand accused of deliberately sickening their children for attention from doctors.
In an era of patient advocacy and hard-charging moms, there's no end in sight to this hotly contested diagnosis.
lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
Since there has been so much about Lyme in the media recently it might not hurt to contact the media about this.
My ex has a long-time friend (35+ years) who is on the editorial staff of Ft. Worth Star-Telegram. The Dallas/Ft Worth papers, and/or TV stations might be interested in this story, too.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
So sorry this happened to you, but you aren't alone it is happening to many mother's across the country relating to Lyme.
Because these mainstream Md idiots don't know a thing about lyme, they have to come up with something absurd. I avoid ER like the plague, best just to make an emergency call to her LLMD next time I guess...it is a shame.
Or if you end up in the ER again, call you LLMD ahead of time and have him call them to clue them in to what she is being treated for.
My LLMD told us (son,husband I all have LD) that if we end up in ER have the doctor's call him immediately.
I was in excruciating nerve pain scalp to feet, ER was one of my visits, the Md on duty said, "You obviously have a chronic stomach issue, follow up with your primary". Okay, that makes sense
I am telling you, I won't go now to ER unless I was unconscious and had no say in the matter.
We put up with so much garbage from Md's, it is absolutely ridiculous.
posted
Turn the situation right around and make a complaint against the hospital staff right away. Within the letter also include any positive tests and articles you can get your hands on. The hospital staff has to be aware of these diseases and treat people with respect.
When I went to over 15 docs and maybe 4-5 ER visits with hospitals I always felt hospitals really didn't listen to me and treated me as if I was making up my symptoms. This cannot go on because then more people will go on not diagnosed. I ended up having Lyme and many of the coinfections.
I urge you to take action and make the complaint against the hospital for faling to take your case seriously. Please look into legal advice also.
Posts: 238 | From Bethlehem, PA | Registered: Oct 2004
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
Whatever you do, I would urge caution. Your daughter is more important than any statement you could make about Lyme disease.
-- Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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