Re: A difficult topic: Allegations while searching for answers/care

[Guest guest]

Thanks for sharing your issues, this concerns me very much. Since we

are still seeking answers, we too have been told things by certain

doctors which make us feel scared. I do have a question, how long

was it from the time a doctor suspected Munchausen to someone

actually contacting you and telling you of the investigation?

I keep all of our sons records and we are active in the search for

answers on a daily bases. Our newest pediatrician has opened our

eyes to many things to be aware of but I am still a little uneasy.

Patty and Cirilo

> I've prayed long and hard about posting this topic, and while it's

not a

> " warm and fuzzy " one, I truly feel that it needs to be openly

addressed. The

> catalyst for posting it now is not only my family's current

situation, but

> also the recent posts of others searching for answers, which

specialist to

> contact, etc.

>

> As I've mentioned, I'm currently under investigation by CPS because

a

> (non-treating) doctor reported possible Munchausen syndrome by

proxy (also

> known as MPB) because I've taken to multiple doctors and

that he has

> had a lot of doctor visits, hospitalizations. I was in shock,

since this has

> actually come up once before, and I thought it had " been put to

rest " the

> last time. But, while true child abuse is horrific and actually

makes me

> nauseated when I hear/read about it, there are a few health

professionals out

> there today trying to make a future for themselves (fame and

monetary wise)

> by saying that MBP is *not* rare and strongly encouraging doctors

to consider

> it whenever a child (and even more so when sick siblings are also

in the

> family) sees the doctor a lot for a variety of medical problems.

Sounds like

> mito right?

>

> I have heard that others on this list, others with mito children,

have been

> falsely accused of MBP also. Many are scared to talk, because

these

> allegations can rear their ugly head any time again. has

had many lab

> tests (and now genetic tests) which show there is something wrong

(and not

> anything that could be induced by another person), yet the

allegations

> continue. And, for those of you with a " proven " diagnosis of mito,

you're

> not safe either. Remember the recent posts regarding differences

of

> professional opinion between USCD and Atlanta? If a CPS referral

is done,

> and their is a difference of opinion, often only the " non-positive "

opinion

> is considered. Also, parents and foster parents of multi-

challenged children

> have also been accused.

>

> Finally, Dr. Marc Feldman (a psychiatrist and self professed MBP

expert) has

> recently published articles saying that many on the Internet,

members of

> groups such as ours, are really gathering information to fabricate

illness

> stories in their children, to get additional " unnecessary "

testing/procedures

> done. He is currently reviewing 's records, but has only

asked CPS for

> the ones of the 2 unfriendly institutions, and has not even

consulted the

> family pediatrician of 15 years, the neurologist who has confirmed

> neuropathy, the genetics research who has found the abnormal genes,

etc.

>

> What can you do about this? Be informed. Research care

providers/locations

> thoroughly before you consider a " second " or " third " opinion. Keep

a copy of

> all of the medical records yourself. Have a strong PCP (although

that

> doesn't always help) and inform him/her of any other appointments.

Check out

> www.msbp.com and read some of the stories there about false

allegations.

> Advocate for regulation of CPS in your state. Right now, they can

take your

> children out of the home without any due process initially. (My

children

> have not been removed from the home, but were interviewed by CPS at

their

> school without my consent/knowledge and without offering the

children the 3rd

> party presence which is required by law.)

>

> I'm sorry to bring up such a tough topic. But, if I can save even

one other

> family from going through the horror of what our family is

presently

> experiencing (and has been for 6 months), then it is worth it.

>

> Respectfully,

> Dena

[Guest guest]

In a message dated 11/25/01 5:49:20 PM Pacific Standard Time,

pattyandcirilo@... writes:

<< I do have a question, how long

was it from the time a doctor suspected Munchausen to someone

actually contacting you and telling you of the investigation? >>

That's what is really bizarre. The doc reported it to CPS in May and the

kids weren't interviewed until the beginning of October! Our pediatrician

said CPS contacted him at the beginning of June, asking for medical records

and he told them he didn't suspect anything, but he didn't tell me until I

called him in October. But, CPS had contacted all the treating doctors at

our local Children's hospital (the reporting doctor was from OHSU in

Portland, where Shriners referred us), and I had noticed a " difference " in

the way we were treated at 's Pulmonary visit in September. I now know

that our primary peds doc (we switched from our long term, 15 year peds doc

in SEattle to him a year ago because it was so hard to commute via ferry and

a long drive to Seattle) is a young doc, has been manipulated by CPS, Dr.

Feldman (IMO) into " wondering " since doesn't have a definitive

diagnosis. I prayed and prayed about changing docs (that wouldn't look good

to CPS) to another older doc in the same group or back to our old peds doc,

and our peds doc told me this past wk he is leaving the practice. So, that

was an answer to prayer so we can change to a peds doc who understands

mito/associated diseases and the uncertainty in obtaining a diagnosis.

Now, when it came up before, at Stanford 4 years ago, it was just brought up

immediately by the GI doc (because was cyclic vomiting with abnormal

labs...now we know it's organic acid problems) and they drew a drug tox

screen and it was all normal. The problem was that they didn't follow up

with what else may have been causing the cyclic vomiting/acidosis/ketosis, so

the focus went from taking care of to looking at me as the cause.

Obviously, that didn't do any good, and now 4 years later, we have

myopathy (I mistakenly said neuropathy earlier), more cognitive delays, etc.

From what I've heard, it can be an immediate " come and take your child "

scenario to the other extreme, as it is with us....

Dena

[Guest guest]

In a message dated 11/25/01 5:49:30 PM Pacific Standard Time,

dgeorg@... writes:

<< however I have been accused of making my other two boys sick by my own

family. Zachary (now five) had recurrent chest infections as a baby and

returned a positive cystic fibrosis test at eleven months of age but that

wasn't enough to convince them as I was then accused of shoving antibiotics

down his throat. My now three year old has severe asthma, severe language

disorder/aspergers syndrome and I cringe just thinking what they must be

saying. >>

Don't act in fear, be proactive. How about having a family conference and

sitting down and talking about their concerns/misunderstandings? It's better

to have it all out in the open, because their accusations could be passed on

to a neighbor, other doctor or whatever and you could end up in the same

situation. I'm not trying to scare anyone, but I know that I'm a good mom

(although I make mistakes like we all do), and if I can be under

investigation by CPS, then anyone can.....and my friends have echoed that

statement to me.

My prayers are with you too,

Dena

[Guest guest]

Dena,

I am really sorry to hear about what's happening to you. I Have never been

acused of such possibly because Lochie had obvious heart defect, etc -

however I have been accused of making my other two boys sick by my own

family. Zachary (now five) had recurrent chest infections as a baby and

returned a positive cystic fibrosis test at eleven months of age but that

wasn't enough to convince them as I was then accused of shoving antibiotics

down his throat. My now three year old has severe asthma, severe language

disorder/aspergers syndrome and I cringe just thinking what they must be

saying. My daughter is fine - no health issues at all except her attitude

may cause her some!!!! I know this is nothing compared to you but that

feeling of blame and basically abuse doesn't go away.

You are in my prayers.

Donna (mum to Lochie 7/20/00 - 7/20/01)

A difficult topic: Allegations while searching for

answers/care

> I've prayed long and hard about posting this topic, and while it's not a

> " warm and fuzzy " one, I truly feel that it needs to be openly addressed.

The

> catalyst for posting it now is not only my family's current situation, but

> also the recent posts of others searching for answers, which specialist to

> contact, etc.

>

> As I've mentioned, I'm currently under investigation by CPS because a

> (non-treating) doctor reported possible Munchausen syndrome by proxy (also

> known as MPB) because I've taken to multiple doctors and that he

has

> had a lot of doctor visits, hospitalizations. I was in shock, since this

has

> actually come up once before, and I thought it had " been put to rest " the

> last time. But, while true child abuse is horrific and actually makes me

> nauseated when I hear/read about it, there are a few health professionals

out

> there today trying to make a future for themselves (fame and monetary

wise)

> by saying that MBP is *not* rare and strongly encouraging doctors to

consider

> it whenever a child (and even more so when sick siblings are also in the

> family) sees the doctor a lot for a variety of medical problems. Sounds

like

> mito right?

>

> I have heard that others on this list, others with mito children, have

been

> falsely accused of MBP also. Many are scared to talk, because these

> allegations can rear their ugly head any time again. has had many

lab

> tests (and now genetic tests) which show there is something wrong (and not

> anything that could be induced by another person), yet the allegations

> continue. And, for those of you with a " proven " diagnosis of mito, you're

> not safe either. Remember the recent posts regarding differences of

> professional opinion between USCD and Atlanta? If a CPS referral is done,

> and their is a difference of opinion, often only the " non-positive "

opinion

> is considered. Also, parents and foster parents of multi-challenged

children

> have also been accused.

>

> Finally, Dr. Marc Feldman (a psychiatrist and self professed MBP expert)

has

> recently published articles saying that many on the Internet, members of

> groups such as ours, are really gathering information to fabricate illness

> stories in their children, to get additional " unnecessary "

testing/procedures

> done. He is currently reviewing 's records, but has only asked CPS

for

> the ones of the 2 unfriendly institutions, and has not even consulted the

> family pediatrician of 15 years, the neurologist who has confirmed

> neuropathy, the genetics research who has found the abnormal genes, etc.

>

> What can you do about this? Be informed. Research care

providers/locations

> thoroughly before you consider a " second " or " third " opinion. Keep a copy

of

> all of the medical records yourself. Have a strong PCP (although that

> doesn't always help) and inform him/her of any other appointments. Check

out

> www.msbp.com and read some of the stories there about false allegations.

> Advocate for regulation of CPS in your state. Right now, they can take

your

> children out of the home without any due process initially. (My children

> have not been removed from the home, but were interviewed by CPS at their

> school without my consent/knowledge and without offering the children the

3rd

> party presence which is required by law.)

>

> I'm sorry to bring up such a tough topic. But, if I can save even one

other

> family from going through the horror of what our family is presently

> experiencing (and has been for 6 months), then it is worth it.

>

> Respectfully,

> Dena

>

>

> Please contact mito-owner with any problems or questions.

>

>

[Guest guest]

Asperger groups:

asperger_autism_12up

asperger_autism

asperger_college

*********

On Mon, 26 Nov 2001 11:15:59 +1030 "Donna Georg" writes:

Dena,I am really sorry to hear about what's happening to you. I Have never beenacused of such possibly because Lochie had obvious heart defect, etc -however I have been accused of making my other two boys sick by my ownfamily. Zachary (now five) had recurrent chest infections as a baby andreturned a positive cystic fibrosis test at eleven months of age but thatwasn't enough to convince them as I was then accused of shoving antibioticsdown his throat. My now three year old has severe asthma, severe languagedisorder/aspergers syndrome and I cringe just thinking what they must besaying. My daughter is fine - no health issues at all except her attitudemay cause her some!!!! I know this is nothing compared to you but thatfeeling of blame and basically abuse doesn't go away.You are in my prayers.Donna (mum to Lochie 7/20/00 - 7/20/01) A difficult topic: Allegations while searching foranswers/care

[Guest guest]

Thanks for your advice Dena. I have tried explaining the boys issues with

them but when I finally questioned them as to how I could make up the

results of Zac's cystic fibrosis tst they replied with " I don't know " . When

I asked them how I could trick the head of the pulmonary medicine clinic

they replied that " Anyone can look convincing! " We were even sent to Sydney

(as we live in Australia - Adelaide) to have more tests which showed there

was something wrong the the cilia we still hit a brick wall. I have been

supportive of my family but I have decided to take a step back and deal with

it on my own. Other than my brother and sister-in-law who do actually

believe me, none of them ever took an interest in Lochie which was very sad.

Anyway - I'm getting off the track. I will keep in mind what you said and

even approach the local doctor. I did tell the pulm. med. doctor what they

said and he said there was nothing I could have done for Zac to return the

test results that he did. Somewhat comforting.

God Bless.

Donna.

Re: A difficult topic: Allegations while searching for

answers/care

> In a message dated 11/25/01 5:49:30 PM Pacific Standard Time,

> dgeorg@... writes:

>

> << however I have been accused of making my other two boys sick by my own

> family. Zachary (now five) had recurrent chest infections as a baby and

> returned a positive cystic fibrosis test at eleven months of age but that

> wasn't enough to convince them as I was then accused of shoving

antibiotics

> down his throat. My now three year old has severe asthma, severe language

> disorder/aspergers syndrome and I cringe just thinking what they must be

> saying. >>

>

> Don't act in fear, be proactive. How about having a family conference and

> sitting down and talking about their concerns/misunderstandings? It's

better

> to have it all out in the open, because their accusations could be passed

on

> to a neighbor, other doctor or whatever and you could end up in the same

> situation. I'm not trying to scare anyone, but I know that I'm a good mom

> (although I make mistakes like we all do), and if I can be under

> investigation by CPS, then anyone can.....and my friends have echoed that

> statement to me.

>

> My prayers are with you too,

> Dena

>

>

> Please contact mito-owner with any problems or questions.

>

>

[Guest guest]

In a message dated 11/26/01 5:43:27 AM Pacific Standard Time,

cutillo@... writes:

<< can you get a letter from

the doc saying that it's " probable " ? We had a letter like that before we

got the definitive dx. The geneticist listed all of 's problems and

stated that he had " probable mitochondrial encephalomyopathy. " Another

thought . . . what about hiring an attorney? There's a cause of action

there for intentional infliction of emotional distress at the very least.

>>

We have a clinic letter from the head of peds neurology that says

" mitochondrial or congenital myopathy " and written information that

has been diagnosed with an autonomic dysfunction problem (which is probably

mito related). That doesn't matter with MBP allegations! I used to think

that it did, but not after reading personal stories on www.msbp.com and other

Web searches and through my own personal experience. Like I said, the MBP

" expert " has only collected the information " favorable " to his building a

case for CPS and has not even talked to the doctors who have said there is

probable mito. I know this is hard to believe (I used to have trouble

believing others until it happened to me).

I have hired an atty, but I can't afford to pay him right now, so I'm

pursuing further proactive research/investigation by myself until the first

of the month, when I can pay him the retainer. But, even after my atty

contacting CPS and leaving 2 voicemail messages (with me also on the line),

they never even called him back! They have NO accountability!! Anyone that

speaks up against CPS is speaking up FOR chid abuse....which is not true of

course. But, that's how many in the public see it.

Finally, regarding legal action. I am pursuing action against Dr. Koeller at

OHSU. But, it's on the basis of false infomration, sending medical records

without my permission to other treating (past and current) facilities, etc.

It's NOT on the basis of his report to CPS, since that is covered/he is

protected by child abuse reporting laws. Many people sue CPS also, but few

recover and it takes years. That's not my purpose...my purpose in all of

this is to increase awareness about false allegations, and that by virtue of

having children with multi-organ system illness, we are at much greater risk

for MBP allegations. It would be wonderful if the UMDF could make a public

policy statement about MBP allegations, the number of false allegations

confronting parents of mito children and a cautionary statement to primary

peds docs, specialists about this problem.

Dena

[Guest guest]

Hi, I'm so sorry to hear you have gone through this. You know, I

distinctly remember coming across research about the fact that mito can be

mistaken for manchusen's and/or Sudden Infant Death syndrome. I don't have

the cite unfortunately . . . If I come across it again, I'll email it to

you. You said 's dx is still unknown . . . can you get a letter from

the doc saying that it's " probable " ? We had a letter like that before we

got the definitive dx. The geneticist listed all of 's problems and

stated that he had " probable mitochondrial encephalomyopathy. " Another

thought . . . what about hiring an attorney? There's a cause of action

there for intentional infliction of emotional distress at the very least.

Good luck. . . .Lori and (complex I and IV)

A difficult topic: Allegations while searching for

answers/care

> I've prayed long and hard about posting this topic, and while it's not a

> " warm and fuzzy " one, I truly feel that it needs to be openly addressed.

The

> catalyst for posting it now is not only my family's current situation, but

> also the recent posts of others searching for answers, which specialist to

> contact, etc.

>

> As I've mentioned, I'm currently under investigation by CPS because a

> (non-treating) doctor reported possible Munchausen syndrome by proxy (also

> known as MPB) because I've taken to multiple doctors and that he

has

> had a lot of doctor visits, hospitalizations. I was in shock, since this

has

> actually come up once before, and I thought it had " been put to rest " the

> last time. But, while true child abuse is horrific and actually makes me

> nauseated when I hear/read about it, there are a few health professionals

out

> there today trying to make a future for themselves (fame and monetary

wise)

> by saying that MBP is *not* rare and strongly encouraging doctors to

consider

> it whenever a child (and even more so when sick siblings are also in the

> family) sees the doctor a lot for a variety of medical problems. Sounds

like

> mito right?

>

> I have heard that others on this list, others with mito children, have

been

> falsely accused of MBP also. Many are scared to talk, because these

> allegations can rear their ugly head any time again. has had many

lab

> tests (and now genetic tests) which show there is something wrong (and not

> anything that could be induced by another person), yet the allegations

> continue. And, for those of you with a " proven " diagnosis of mito, you're

> not safe either. Remember the recent posts regarding differences of

> professional opinion between USCD and Atlanta? If a CPS referral is done,

> and their is a difference of opinion, often only the " non-positive "

opinion

> is considered. Also, parents and foster parents of multi-challenged

children

> have also been accused.

>

> Finally, Dr. Marc Feldman (a psychiatrist and self professed MBP expert)

has

> recently published articles saying that many on the Internet, members of

> groups such as ours, are really gathering information to fabricate illness

> stories in their children, to get additional " unnecessary "

testing/procedures

> done. He is currently reviewing 's records, but has only asked CPS

for

> the ones of the 2 unfriendly institutions, and has not even consulted the

> family pediatrician of 15 years, the neurologist who has confirmed

> neuropathy, the genetics research who has found the abnormal genes, etc.

>

> What can you do about this? Be informed. Research care

providers/locations

> thoroughly before you consider a " second " or " third " opinion. Keep a copy

of

> all of the medical records yourself. Have a strong PCP (although that

> doesn't always help) and inform him/her of any other appointments. Check

out

> www.msbp.com and read some of the stories there about false allegations.

> Advocate for regulation of CPS in your state. Right now, they can take

your

> children out of the home without any due process initially. (My children

> have not been removed from the home, but were interviewed by CPS at their

> school without my consent/knowledge and without offering the children the

3rd

> party presence which is required by law.)

>

> I'm sorry to bring up such a tough topic. But, if I can save even one

other

> family from going through the horror of what our family is presently

> experiencing (and has been for 6 months), then it is worth it.

>

> Respectfully,

> Dena

>

>

> Please contact mito-owner with any problems or questions.

>

>

[Guest guest]

Dena,

You have posted an excellent note to us all. As a parent who has been down that MBP route, I know exactly the anger and fear and confusion you have felt and probably still feel. It is so tremendously difficult for us to parent children with mito disorders, and the added burden of having someone watch every move you make, scrutinzing for mistakes, can often make it unbearable. Your point about being infomred is an excellent one.

ruth for the hilandgang

[Guest guest]

In a message dated 11/26/01 8:17:31 PM Pacific Standard Time,

hilandgang@... writes:

<< As a parent who has been down

that MBP route, I know exactly the anger and fear and confusion you have

felt

and probably still feel. >>

Thanks for the " public " support Ruth, and if you'd feel comfortable sharing,

either on the list or privately, about your own experience, and how you

survived/prevailed, I'd truly appreciate it! :-)

Blessings,

Dena

[Guest guest]

Dena,

I don't mind sharing our story, because I think it's really important that other people *know* it does happen. My husband, Steve, and I are the proud parents of Mitch, age 6 1/2 (developing normally) and Lexi, now 3 1/2 (mito disorder, suspected Compexes I and III, but still testing to find out for sure). Lexi was born without any indication of problem. She was 3 weeks early due to my high blood pressure, but all looked great....until she was born. Within 4 hours after her birth, she was struggling to breathe, and had been taken to the NICU. Four days later we went home with no idea there was an ongoing problem....until she kept turning purple when she would try to nurse. So thus began our odyssey of 23 hospital visits to date, with numerous tests and needle sticks and doctors who just didn't know (starting to sound familiar, right?). So I think it was about our 7th hospitalization, after being in there for 9 days and watching her heart and breathing stop over and over and over that I first encountered a problem. We were still waiting for an answer, and our pediatrician had told us that this time we weren't going home until he knew an answer as to what was causing all her problems. Then this pulmonologist came waltzing in the door. He said that all of his tests came back within normal (surprise surprise...so had every other test they had run to date) and that structurally there was just "no reason" for all of Lexi's problems. He then went on to say that, "OF COURSE" the next thing that needed to be looked at was MBP). I was stunned and shocked and outraged beyond measure. I felt like my world had just collapsed under me, because here I was struggling to keep my kid alive on a daily basis and some idiot blames it on me! I don't think I have ever felt lower than in that moment. But our case was really never investigated, because the idiot doctor then went on to say that "fortunately for you, Lexi's problems have been observed by other staff members". But it was in that moment that I realized how precariously we were hanging over the edge of the cliff. And from that moment on, I was extremely aware of the fact that people were looking over my shoulder at every single little thing. If I missed a doctor's appointment, if I made *too many* doctor's appointments, if I called 911 a little too often, if I seemed "too knowledgeable" about Lexi's condition....all of these were "red flags" that I was a nut case and causing my daughter's problems. Sorry if I still sound bitter, but I am. We have since moved to a new state (after my Dad died in March) and are encountering the same types of problems. I am STILL worried every time I have to call the doctor. Today, we are snowed in and I'm going to have to cancel a cardiology appointment...and I worry how THAT will look because we've cancelled it once before.

I think THAT is the worst part about a MBP allegation, is that it puts a TREMENDOUS mental burden on the family. I was already second guessing everything I was doing with Lexi before MBP was mentioned. Now I question every decision over and over. And even though we were cleared and all is safe for the time being, we now live with that thought always lurking in the back of our minds.

Sorry for the long post, but it is such an important issue.

ruth for the hilandgang

[Guest guest]

In a message dated 11/27/2001 9:50:58 AM Eastern Standard Time,

hilandgang@... writes:

<< I think THAT is the worst part about a MBP allegation, is that it puts a

TREMENDOUS mental burden on the family. I was already second guessing

everything I was doing with Lexi before MBP was mentioned. Now I question

every decision over and over. And even though we were cleared and all is

safe for the time being, we now live with that thought always lurking in the

back of our minds.

Sorry for the long post, but it is such an important issue >>

Hi all:

I also have been through this ordeal as so many of us have. Well said Ruth; I

couldn't put it into writing. I wish someone would publish something about

this.

Michele

[Guest guest]

In a message dated 11/27/01 9:25:31 AM Pacific Standard Time,

michsull@... writes:

<< I also have been through this ordeal as so many of us have. Well said

Ruth; I

couldn't put it into writing. I wish someone would publish something about

this.

Michele >>

Michele, could you please post your story too? This might be the first

" seed " being planted to interest someone in publishing about the

MISSedDiagnosis of mito disease and/or the UMDF publishing a statement about

doctors exercising caution about parents searching for a possible/definite

mito diagnosis being overly labeled as MBP.

Thanks to all the brave ones out there who are sharing their

stories...knowing how scary it is, and for all of those who are reading with

an open mind....

Blessings,

Dena

p.s. Jeff posted a very nice message, and while the offer of help meant so

much, I don't want to accept retainer help, etc., because I don't want it to

" muddy the waters " about my motivation for posting about this topic. Posting

your experiences, advocating through the UMDF and your local

communities--that's how we can all help each other. Do a web search for Marc

Feldman and see how subjective his information is (parents can be overly

protective or not caring enough, etc., etc...a no win situation)....don't

take my word for it....educate yourself. The truth will set us all

free....smile.

[Guest guest]

In a message dated 11/27/01 6:50:45 AM Pacific Standard Time,

hilandgang@... writes:

<< But our case was really never investigated,

because the idiot doctor then went on to say that " fortunately for you,

Lexi's problems have been observed by other staff members " . But it was in

that moment that I realized how precariously we were hanging over the edge

of

the cliff. >>

This sounds like what we went through at Stanford almost 4 years ago. It was

only brought up " in house " and I cooperated fully (although I was very upset

and scared) and obviously, nothing turned up, because there wasn't anything I

was doing! THe problem was that after ruling out anything I had done (drug

tox screens, interviews, etc.), they didn't look for the real cause of

's problems. He had bicarbs at the 10 to 12 level and blood sugars in

the 40s and 50s, (on two different admissions), yet they didn't do any

organic acid studies or any other investigations! So, almost 4 years later,

with worse (myopathy now, restrictive lung disease, decreased

cognitive and many more admissions during illness), I'm still openly

advocating/searching for answers and this time, the accusations are through

CPS and much more serious.

On a dysautonomia list I " m on, one mom told me that children with FD (a

genetic dysautonomia disease) used to be taken away from their parents (in

the early 50s before it was diagnosed as a genetic disease) because the

parents must be causing this disease. She said the same about autism-the

same thing used to happen. What a tragedy...especially when I hear of so

many children who are truly abused, beaten, neglected. Yet, MBP is the " fad

diagnosis " /witch hunt of our current history, and so many families are

suffering even more than they are already with a child with chronic/serious

illness.

But, I will not be defeated. I will still advocate, and I KNOW that the

truth will eventually prevail. We have this wonderful medium of the Internet

to share information, support, resources. If we speak up, are confident in

our love, care, advocacy for our children, and we speak up in numbers, we

will win....and so will our children.

Dena

[Guest guest]

I've wondered if the doctors, that know mito, could possibly do a write-up,

as doctor to doctor, to let the doctors( that don't know mito) know about

mito and to think twice before suspecting a parent of child abuse in this

manner. This way the doctors unfamiliar with mito will feel less threaten

by the info if it comes from a collegue (sp?). In the info, we should be

sure to stress the struggle to find a diagnosis. That people go thru

multiple suspected diagnosis before they might stumble on mito and finally

make the connection. We've been through Syndrome, Ehlers-Danlos

Syndrome, Marfans Syndrome, a possible variant of Marfans called

Shprintzen-Goldberg Syndrome, checked also for Homocystinuria and

Mitochondrial at an early age but symptoms were not strong enough to

indicate as so, checked for Lower Spinal Muscular Atrophy because of an

abnormal EMG and now we are back to the suspected mitochondrial. Needless

to say, Cassie has been through several tests, all because we wanted to know

what she has so we can hopefully have an answer or cure for it. Not

knowing, leaves you feeling like if you have to find out so you can help

your child, you can't sit around and watch her waste away. We've got to at

least feel like if we gave it our best shot in helping her. Always wanting

to be on top of it all, if not stop it, at least slow it down and hopefully

make the ride not so bumpy. In my opinion, sitting around and not trying

to find out what it is and what to do to ease it, is neglect! We have

questioned about the testing, 'where do you draw the line? One doctor

commented to me that the thing to ask yourself is " Will she benefit from

it? " Cassie is lined up for an EEG, I too started to wonder if a few of

Cassie's doctors might be questioning the testing we have done/ may consider

to do. The reason Cassie is set-up for an EEG, is because I've wondered if

the tremors that she has and lose of function is tied into possible siezures

that we are failing to see, maybe it is hitting at night when we won't

really see them. Not to get off the direct topic, but has anyone done an

EEG to find reasons for tremors and lose of function through this route? As

you can see, I too am second guessing if I'm doing the right thing, am I

sending her through a needless test?? The emotional roller coaster :-(

Love to you all

Re: A difficult topic: Allegations while searching for

answers/care

> In a message dated 11/27/2001 9:50:58 AM Eastern Standard Time,

> hilandgang@... writes:

>

> << I think THAT is the worst part about a MBP allegation, is that it puts

a

> TREMENDOUS mental burden on the family. I was already second guessing

> everything I was doing with Lexi before MBP was mentioned. Now I

question

> every decision over and over. And even though we were cleared and all is

> safe for the time being, we now live with that thought always lurking in

the

> back of our minds.

>

> Sorry for the long post, but it is such an important issue >>

> Hi all:

> I also have been through this ordeal as so many of us have. Well said

Ruth; I

> couldn't put it into writing. I wish someone would publish something

about

> this.

> Michele

>

>

> Please contact mito-owner with any problems or questions.

>

>

[Guest guest]

In a message dated 11/27/01 9:02:42 PM Central Standard Time,

mkeogh@... writes:

<< Not to get off the direct topic, but has anyone done an

EEG to find reasons for tremors and lose of function through this route? As

you can see, I too am second guessing if I'm doing the right thing, am I

sending her through a needless test?? The emotional roller coaster :-( >>

,

Our neuro says whenever there is a loss of functioning, or a significant

neurological change an EEG is warranted. While not always totally accurate,

and EEG can be helpful. It is pretty quick, and painless too. Can she

benefit from it? Yes, if there is seizure activity. If there is not, you

can benefit, knowing she's not seizing at night. I say do it.

My daughter has also been tested alot and we have been through several

syndromes (Landau Kleffner Syndrome, PNDD, Rett, etc) also landing at mito.

I always think about if it is something painful or invasive as well. I

always figure if it is blood or urine, go ahead, even if it is a long shot.

She is cathed frequently at home, and I usually get the urine this way, and

she has a CVL, so we usually combine the testing with routine labs. If it is

something more invasive, we'll only do it if there is a very clear

indication, or combine it with a time when she is under for something else.

[Guest guest]

,

Thank You So Much for your response. I am getting to the point where I am

looking over my shoulder to make sure I'm doing the right thing. GOD knows

how much I love my daughter--I surely don't want to put her through needless

tests. Would love to chat back and forth privately with you, comparing

journies and such. I did contact Cassie's neurologist and spoke to his

nurse expressing my concern about whether the tremors and lose of function

(could night seizures be causing the lose of function) was justifiable for

an EEG. She reassured me that with her having tremors and being concerned

if Cassie could be having seizures at night was enough to justify the test.

When we first placed the decision to go ahead with the plans for an EEG,

Cassie was showing some slight increase in the amount of tremors, but now

they have eased greatly, BUT she will still have them. I've also noticed

that they tend to show up more when she grows fatiqued. They are looking at

doing a " natural sleep EEG " . I hope if there is anything to be found, that

it will show itself. Wonder if it can be one of those situations of here

yesterday but gone today. I hope to be able to stop or at least slow down

this lose of function. Cassie is now losing function in her right hand and

she is really frustrated and sadden by this. This weakness is also

affecting her breathing function and now she is basicly just drinking,

eatting is out of the question. I hate it! I tell her that I wish I knew

what it is that is doing this to her and that I am sorry that this is

happening to her. It is so backward to think we want to find something on a

test, when we all wished that these problems didn't exist with our kids.

Thanks , for letting me know , also on your end, that the lose of

function does warrant an EEG.

Re: A difficult topic: Allegations while searching for

answers/care

> In a message dated 11/27/01 9:02:42 PM Central Standard Time,

> mkeogh@... writes:

>

> << Not to get off the direct topic, but has anyone done an

> EEG to find reasons for tremors and lose of function through this route?

As

> you can see, I too am second guessing if I'm doing the right thing, am I

> sending her through a needless test?? The emotional roller coaster :-(

>>

>

> ,

> Our neuro says whenever there is a loss of functioning, or a

significant

> neurological change an EEG is warranted. While not always totally

accurate,

> and EEG can be helpful. It is pretty quick, and painless too. Can she

> benefit from it? Yes, if there is seizure activity. If there is not, you

> can benefit, knowing she's not seizing at night. I say do it.

> My daughter has also been tested alot and we have been through several

> syndromes (Landau Kleffner Syndrome, PNDD, Rett, etc) also landing at

mito.

> I always think about if it is something painful or invasive as well. I

> always figure if it is blood or urine, go ahead, even if it is a long

shot.

> She is cathed frequently at home, and I usually get the urine this way,

and

> she has a CVL, so we usually combine the testing with routine labs. If it

is

> something more invasive, we'll only do it if there is a very clear

> indication, or combine it with a time when she is under for something

else.

>

>

>

>

> Please contact mito-owner with any problems or questions.

>

>

[Guest guest]

I

<< The reason Cassie is set-up for an EEG, is because I've wondered if

the tremors that she has and lose of function is tied into possible siezures

that we are failing to see, maybe it is hitting at night when we won't

really see them. Not to get off the direct topic, but has anyone done an

EEG to find reasons for tremors and lose of function through this route? >>

, This was the pattern with my daughter. During the summer of 99, she

began to wake up every nite about an hour after going to sleep, crying

inconsolably. This from a child who never cried. We were not sure what was

going on. The episodes tapered off, but when we mentioned it to her neuro

later that year at an appt, he ordered an EEG. A week later I recieved a 3

sentence letter telling me Chelsea was having significant seizure activity.

We were completly shocked, because we had observed nothing that seemed to be

a seizure. Shortly after, we did identify her seizures. They were like little

" power episodes " . Her eyes would get all wild and her limbs twitchy, and she

would actually sit well. She was also very stimulated and active afterwards.

Her seizures have changed quite a bit since then. In fact, the flu shot( I

think) sent her into a torrent of new seizures. They are finally tapering

off, but a therapy today, her OT was saying she isn't using her hands as

much, her grip is worse, and her head and trunk control is wobbly again,

where as she has been much more steady recently. So I guess the seizures can

cause damage/regression, but hopefully with a little effort, she'll be back

to her 'old' self soon! I also give Chelsea a small dose of Lecithin

everyday. It is an emulsified fatty acid that makes up the sheaths around the

neurons. I give Chelsea low cal granules, but saw a liquid version at the

health food store that is 130 cals/ tbsp!(for those looking for xtra cals).

I hope you find answers you are looking for.

e, Chelsea's mom(non-specific mito)

[Guest guest]

Dena,

I am a little behind here as I don't get to visit this board as much

as I would like. My almost 6 year old has a mito myopathy (of

unknown specific type due to lack of proper and thorough testing).

He was diagnosed a few months before his first birthday and boy do I

wish that back in early 1996 there was the internet info available

that there is now not to mention support groups like this. Most of

the med info on the net back then was in foreign languages...talk

about frustrating.

Anyway, I went through a similar experience although not to that far

of a degree. The doctors were stumped at Tx Childrens in Houston and

after many hospitalizations (alot of 3 weeks home 10 days in

hospital) I had one GI minority dwarf (literally a real dwarf I am

not being insulting here) question my " mothering " skills after

spending 10 minutes with me and Luke. He actually had the audacity

to ask me about " what was going on at home " and when I answered what

our home life was like he followed with " no what are you doing to

your son " . Since we were hospitalized at the time it followed with a

visit from Social Services. Thankfully all ended there....for the

inquiry but not for the marks it left on me.

Looking back I think that alot of it had to do with me being a young

(23) single mother with 3 sons. Put that with a doctor that I think

felt he had to make up for some of his short commings (okay that was

a direct and deliberate jab) by " being the all knowing " and since he

couldn't diagnose Luke it had to be something that I was doing. I

was quick to inform my lawyer although I did not " sic " him....just

kept him posed and ready. (didn't want them to think I had something

that needed to be defended). I also quickly pointed out to him that

by posing those questions and starting that inquest he was

questioning my ability and motives as a mother. I told him at NO

time had I inquired about his competancy to treat my son...never

asked where he went to med school, graduated in his class, how many

malpractices cases he had had filed, patients he had lost, etc etc

etc. I let him know that while he was a doctor at that hospital I

WAS MY SON'S MOM and I would be a very active participant in his care

and effective immediately his services would no longer be needed.

After social services met with me and informed me there would be no

need for follow up he showed up once more where I quickly reminded

him that he had been dismissed and if he came near my son's room or

my son's chart I would file a restraining order and press charges....

(after speaking to my attorney of course).....he was gone. The one

thing that got me though was that while we DID finally receive a

diagnosis and while the inquest was found unjustified it still was

and is in my son's medical records....no apology, no removal, no

nothing.

I found that many times after that incident that I had to monitor

persistance and active roll playing to make sure it didn't appear to

be misguided to the professionals that I know are put in a tough

position of drawing the fine line. Many times a comment would be

made or an eyebrow raised but then quickly dropped depending on my

response...I think one of the keys is letting the doctors think they

are the puppetmaster instead of the puppet if you know what I mean.

Another part of me...the motherly part that feels for all the abused

children says I would rather be inconvenienced by an inquest that is

unfounded than to have a child's parent that is guilty of this

overlooked.....but I guess that is easy for me to say because mine

didn't go as far as yours is.

My prayers go out to your and your family.....we all know that during

these trying times of trying to get a diagnosis this is the last

worry you need. Keep your head high and your faith strong.

[Guest guest]

Dear Dena,

Thankyou for being so brave bringing this topic out into the open. Two

years ago I was accused of making my son ill even thiugh he had been

diagnosed with cimpllex 4.At the time my son was extremely ill and it was

unexplained. A special was put in my sons room and I was nit allowed to be

alone with him even for a minute,the nrse accompanyed us even to the toilet.

I recieved legal advice and we demanded unless they came up with proof they

had to remove the nurse from he room.T hey removesd rghe nurse that

day. had unexplained dirrohea but since than we have found out he

actually had inflammatory bowel disease. I was also acused of lying about

gis urine output we found out two months later he had Diabetes

Insipidus.Lots of other things happened as well but i think i came close to

loosing custody of him. We have been lucky in some ways s symptoms

have ben explained eventually. I am in the situation now whereni have to

give him IM hYDRCORTISONE Injections at home when neesed ., and this

concerns me greatly. I am sorry about the long vent but we do ned to talk

about tgese things.

Therese(s Mum)

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

[Guest guest]

In a message dated 11/30/01 7:31:37 PM Pacific Standard Time, ryan4me@...

writes:

<< My prayers go out to your and your family.....we all know that during

these trying times of trying to get a diagnosis this is the last

worry you need. Keep your head high and your faith strong.

>>

Thanks so much for also bravely sharing your story..and for the

prayers! :-) I finally rec'd. copies of the CPS records on Friday, and if

this wasn't so serious and I wasn't so upset, I'd have to laugh. The doc

from OHSU contributed, but the main report came from a school counselor

(after I withdrew the kids from her divorce support group, because my kids

were the only kids in the group and I felt she was acting inappropriately.)

It turns out she filed the CPS report saying " Munchausen by Proxy " 2 wks

later. But, the report includes such items as: " Mom's body

language/behavior isn't that of a mother grieving for a sick child-she is too

upbeat and smiling " , Mom must be lying about her disability (sic) because she

volunteered as a cabin counselor for the school field trip and this is not

consistent with Chronic Fatigue Syndrome disabilty " , etc., etc. It it truly

a witch hunt of unbelievable proportion! The docs have basically said there

is not a MBP finding, but the gossip, misguided agenda of a school counselor

caused all of this. And, now the same school counselor has said that ALL of

her records are " priviliged work files " and aren't disclosable to me or any

other parties. I'm following up on this, but this is scary to all of us with

kids in school. This is the same counselor who wouldn't accept my daughter's

pediatricians letter saying she needed large print books (she has a cataract,

amblyopia and extreme far sightedness) and made me go to a pediatric eye

specialist, who wrote the same letter, but they still haven't implemented the

written 504, saying that the district doesn't have large print books and

na isn't complaining of any problems....sigh.

At least the truth is coming out, and through my faith, I KNOW that we will

survive...athough the light at the end of the tunnel still seems quite a ways

away. I did write our peds doc (who has been waffling a bit) a strong email,

after finding out that 's blood drawn for amino acids was never run

(and never followed up on) even after strongly abnormal organic acid test

results. I was cowered into not advocating for my son once before-I won't

allow that to happen again.

Thanks for ALL of your support!

Dena

[Guest guest]

You know it burns me that a school professional can act in this way. But in our

state we have access to our children's files. Not sure if that includes

counselors files but wouldn't it be the same format to obtain records by signing

a release? I know my oldest was having problems in school and I got to copy his

whole school record. Not much there, but I could. And don't schools have to

go

with what is given to them regarding a doctor's order? She may not be

complaining because she doesn't want to make waves and some kids don't know how

to express themselves if something is bothering them. How old is your daughter?

Some teachers just don't get it. Good luck and glad you found out something

Dena; except as you said all the whispers and gossip is just as bad because of

something like this getting started.

mom to Leah

waislandgirl@... wrote:

> In a message dated 11/30/01 7:31:37 PM Pacific Standard Time, ryan4me@...

> writes:

>

> << My prayers go out to your and your family.....we all know that during

> these trying times of trying to get a diagnosis this is the last

> worry you need. Keep your head high and your faith strong.

>

>

> >>

>

> Thanks so much for also bravely sharing your story..and for the

> prayers! :-) I finally rec'd. copies of the CPS records on Friday, and if

> this wasn't so serious and I wasn't so upset, I'd have to laugh. The doc

> from OHSU contributed, but the main report came from a school counselor

> (after I withdrew the kids from her divorce support group, because my kids

> were the only kids in the group and I felt she was acting inappropriately.)

> It turns out she filed the CPS report saying " Munchausen by Proxy " 2 wks

> later. But, the report includes such items as: " Mom's body

> language/behavior isn't that of a mother grieving for a sick child-she is too

> upbeat and smiling " , Mom must be lying about her disability (sic) because she

> volunteered as a cabin counselor for the school field trip and this is not

> consistent with Chronic Fatigue Syndrome disabilty " , etc., etc. It it truly

> a witch hunt of unbelievable proportion! The docs have basically said there

> is not a MBP finding, but the gossip, misguided agenda of a school counselor

> caused all of this. And, now the same school counselor has said that ALL of

> her records are " priviliged work files " and aren't disclosable to me or any

> other parties. I'm following up on this, but this is scary to all of us with

> kids in school. This is the same counselor who wouldn't accept my daughter's

> pediatricians letter saying she needed large print books (she has a cataract,

> amblyopia and extreme far sightedness) and made me go to a pediatric eye

> specialist, who wrote the same letter, but they still haven't implemented the

> written 504, saying that the district doesn't have large print books and

> na isn't complaining of any problems....sigh.

>

> At least the truth is coming out, and through my faith, I KNOW that we will

> survive...athough the light at the end of the tunnel still seems quite a ways

> away. I did write our peds doc (who has been waffling a bit) a strong email,

> after finding out that 's blood drawn for amino acids was never run

> (and never followed up on) even after strongly abnormal organic acid test

> results. I was cowered into not advocating for my son once before-I won't

> allow that to happen again.

>

> Thanks for ALL of your support!

> Dena

>

>

> Please contact mito-owner with any problems or questions.

>

>