MBP Syndrome

[Guest guest]

This question of MBP is very interesting and let us all try to think of this

way: it hinges on the

difference between what the medical profession claims is wrong with the child

and what the parent

perceives.

I recently switched insurance and therefore doctors, entirely. At Kaiser, they

told me my son had a

normal brain, he had ADD, and for 5 years they didn't treat his cyclic vomiting

syndrome, a really

horrible symptom. They consult with a metabolic doctor who doesn't really think

many people have mito and

if it can't be documented in the Southern blotting test (which Ken had and only

tested for 14 kids of

known mito defects), then it AIN'T mito and enough of all this expansion of the

disorder.

We switched to Children's LA and doctors and Ken is being medicated successfully

for cyclic vomiting, his

mito is being treated as best as can be by diet, no one is trying to get me to

do invasive testing (which

I oppose), the neurologist has given him a diagnosis of high functioning autism

and documented all kinds

of other neurological dysfunction, he had a very through OT exam indicating

severe motor dysfunction, and

the MRIs done at Kaiser were correctly read to reveal a very serious atrophy of

his basal ganglia

(abnormal brain). I could even see the missing part of his brain on the films.

He is now eligible for

services from a number of agencies whereas he was not form the inattentive

evaluations Kaiser gave him.

However, I was a thorn in their side, insisting he WAS ill, something was wrong;

I had taken them to

greivance. I refused to leave people's offices until they listened and did

things as I wanted (only

occasionally with any effect). Suppose they claimed this was the working of an

unhinged MBP mom and Ken

was taken away from me. They could have embarked on invasive, painful and

inconclusive testing (frozen

biopsy) and it would have taken many months for the medical evidence to prove

them wrong AND then I would

have to wade through the social services system.

MBP is generally (I say this only because there are documented cases of MBP) the

figment of ignorant

doctors and medical science isn't advanced enough to provided the " evidence " we

might need to document the

disease.

My sympathies to you . Hope everyone gets smart and your child can

rejoin the family soon.

Sue Ellen

________

" .L. " wrote:

>

>

> There seems to be more coverage on this now...there was also a 20/20 segment

> on a mom accused for the illness of her little boy... .She was

> falsely accused however..I know because I am living this nightmare right

> now.Her son became sicker and died inthe hospital's care after they accused

> her and denied her and her husband access to him.The hospital essentially

> killed that little boy and now the parents are suing the hospital for his

> death.For more info on this you can visiy www.msbp.com,as the s have

> become a support systen for all families falsely accused.Now, there are

> caregivers and parents who do actually do this to their children and when

> you see that a child all of a sudden doesn't have the feeding problems in

> her mom's care as in the hospital's care I would be suspicious that this was

> a real case of abuse.However,ANY parent of a child with a rare or chronic

> illness is at risk of being accused,as parents of children with mito

> diseases,which are often vague,hard to diagnose and where the symptoms are

> far ranging, it is a particularly scary possibility,if it can happen to me

> and my family it can happen to anyone.We adore our son and his problems are

> remaining the same in care as they did at home so we are sure he will be

> returned to us,but to have your family ripped apart like this is the worst

> thing imaginable.A lot of doctors and hospitals accuse the parents if they

> have trouble reaching a dignosis, the symptoms of the disease have unusual

> and repeated presentations,if the parent is always with the child ans seeks

> out information on the medical issues the child has,if the parent seems to

> have a good understanding of medical procedures,or if the parent is

> demanding and pushes for a diagnosis.How many of us on this list do all

> these things just as parents of an ill child with a misunderstood

> disorder?Looking for info on mito diseases is what led me to this list!How

> many of us know that this is probably the answer to what our child has but

> the biopsies sre inconclusive or normal, and you keep looking for

> answers?This makes you a prime candidate for a msbp accusation.Please be

> aware and do not judge others until you really know the truth.I always was

> holier than thou about the whole thing and when I would see or read

> something about it I thought then that well, the parents must have done

> something,why would a hospital do that?Now I am on the other side and see it

> for what it is.We were accused because we threatened to sue for the shoddy

> medical care Jonah recieved.Not by everyone at the hospital but by the one

> dept.So it can happen.We go to trial to fight for our little boy to come

> home next week.We are lucky inthat we have his pediatrician,hisnurses,his

> infant development workers,a psychologist who interviewed and tested us, and

> an msbp expert from the US coming to testify on our behalf.We are positive

> that Jonah will come home...but what about the families without as much

> support as us?Anyway...sorry for venting..I just want all of you to think

> about it and be careful so you never have to go through this too.

> (mom to Cadence 4,and Jonah 27mos(.Complex1 (2 abnormal

> biiopsies),Carnitine deficiency and Malabsorbtion)

>

> >

> >Reply-To: Mitoonelist

> >To: CA Mitochondrial list <mitochondrialonelist>, Mito List

> ><Mitoonelist>

> >Subject: MBP Syndrome

> >Date: Thu, 04 Nov 1999 08:04:14 -0600

> >

> >I know this topic has been discussed quite a bit lately, and I thought

> >some of you might be interested to know that the cover of this month's

> >people magazine features a mom near Ft. Lauderdale, Florida that has

> >been recently accused, (and convicted, I believe) of MBP for endangering

> >the life of her young daughter. The daughter has had numerous

> >hospitalizations, mom worked as an office manager in a pediatrics

> >office, and the child had numerous medical issues. Recently when the

> >case was finally brought to court, the child was removed from the family

> >and sent to a children's hospital in Ohio that specialized in feeding

> >disorders. After an extended stay and evaluation, it was documented

> >that the child was eating everything from pizza to hot dogs, and her

> >feeding tubes were removed.

> >

> >There is also a special report on 20/20 this evening on the same family.

> >

> >Jeannine

> >

> >

> >------------------------------------------------------------------------

> >Brought to you by www.imdn.org - an on-line support group for those

> >affected by mitochondrial disease.

> ><< text3.html >>

>

> > Brought to you by www.imdn.org - an on-line support group for those affected

by mitochondrial disease.

[Guest guest]

Kathy:

I was accused of this, fought for my child and asked for a polygraph and

psychiatric evaluation and was found not guilty. The medical " professionals "

analyzed my son's formula for poisoning, found nothing and realized we were

not damaging him. You have to understand when these children look typical,

have intermittent problems, and assertive parents they are quick to diagnose

this sickness.

I have been accused more than once-and it is overused when doctors are lost

for answers and treatment plans!!!!

Michele

[Guest guest]

I still say the best protection against MBP is to get a good relationship

with at least one reliable medical provider. *Any* of us *could* be accused

and some have been - and been immediately backed off on because it isn't a

valid situation. A poor doctor *could* decide it's all in he/her/our heads

but most don't -- most try like us to find out what is wrong with our kids.

>However, I was a thorn in their side, insisting he WAS ill, something was

wrong; I had taken them to

> greivance. I refused to leave people's offices until they listened and

did things as I wanted (only

> occasionally with any effect). Suppose they claimed this was the working

of an unhinged MBP mom and Ken

> was taken away from me. They could have embarked on invasive, painful and

inconclusive testing (frozen

> biopsy) and it would have taken many months for the medical evidence to

prove them wrong AND then I would

> have to wade through the social services system.

They certainly might have but they *didn't* because it was recognized that

you were advocating for your child, not poisoning him. A good doctor can

really tell the difference and there are more good doctors than bad. In

fact, it takes alot of guts to accuse someone of MBP and take a child away.

Very few doctors have that kind of guts, or for that matter, that kind of

willingness to get involved.

I object when you say:

> MBP is generally (I say this only because there are documented cases of

MBP) the

>figment of ignorant doctors and medical science isn't advanced enough to

provided the > " evidence " we might need to document the disease.

Generally, it is a parent escalating their child's illness to get

attention -- maybe to get a diagnosis of a difficult to diagnose disease.

Mothers have put all kinds of things into tubes and IVs trying to get action

taken for their child - tests or whatever. You don't read about the MBP

where mom actually *did* do something -- certainly not on the site you

mentioned.

It *is* a form of mental illness and the family needs help. Look at that

woman with nine babies who had SIDS -- it was *her* family that caused

scientists to " discover " the sids gene only to find out 20 years later that

she smothered them all on purpose! Don't -- please don't -- discount all

the _real_ MBP cases that cause needless suffering to children because of

untreated mental illness. Wouldn't you rather see a child safe and cared

for?? I'm sorry for every one of you who might have been suspected and I

doubt that each of us hasn't at least been considered MBP at least once in a

doctor's mind -- but I'm sorrier for those kids whose doctors don't make the

connection who's mommy's have them intubated and treated unnecessarily.

Just IMHO. Flame away.

Kathy

[Guest guest]

It's true Kathy that there are parents out there that harm their kids this

way,but there has to be amore careful and effective way of accusing them, to

protect parents from being falsely accused.I used to be on that side of the

fence.I had total faith in our medical system and the doctors.I rarely

questioned their intentions and when I would read about msbp oe hear about a

child being abused that way I always thought well, the parents must have

done something.A docotr wouldn't lie would they?My son has had 2 muscle

biopsies with the same defect(complex 1) showing each time.Everything he has

wrong with his health has been diagnosed and proven by the same hospital

where the doctor that is accusing us works.We have extensive support in our

community from medical and professional service providers,yet because of the

stature of the hospital and the rigamorole of the child protective services

system we have lost our son for 5 months now.

An allegation without proof is enough to have your child taken until it can

be proven in court yout child has a recognizable disease.We believe this

will occur but it will have taken 6 months by the time this is all

over.Imagine 6 months with your child out of your home.Jonah continues to

have the same issues as he did at home, nothing has changed and yet we still

have to wait and follow through the steps to get him back.That is why I say

anyone with a child with an unusual disorder is at risk.

>

>Reply-To: Mitoonelist

>To: <Mitoonelist>

>Subject: Re: MBP Syndrome

>Date: Thu, 4 Nov 1999 16:34:55 -0700

>

>I still say the best protection against MBP is to get a good relationship

>with at least one reliable medical provider. *Any* of us *could* be

>accused

>and some have been - and been immediately backed off on because it isn't a

>valid situation. A poor doctor *could* decide it's all in he/her/our heads

>but most don't -- most try like us to find out what is wrong with our kids.

>

> >However, I was a thorn in their side, insisting he WAS ill, something was

>wrong; I had taken them to

> > greivance. I refused to leave people's offices until they listened and

>did things as I wanted (only

> > occasionally with any effect). Suppose they claimed this was the

>working

>of an unhinged MBP mom and Ken

> > was taken away from me. They could have embarked on invasive, painful

>and

>inconclusive testing (frozen

> > biopsy) and it would have taken many months for the medical evidence to

>prove them wrong AND then I would

> > have to wade through the social services system.

>

>They certainly might have but they *didn't* because it was recognized that

>you were advocating for your child, not poisoning him. A good doctor can

>really tell the difference and there are more good doctors than bad. In

>fact, it takes alot of guts to accuse someone of MBP and take a child away.

>Very few doctors have that kind of guts, or for that matter, that kind of

>willingness to get involved.

>

>I object when you say:

>

> > MBP is generally (I say this only because there are documented cases of

>MBP) the

> >figment of ignorant doctors and medical science isn't advanced enough to

>provided the > " evidence " we might need to document the disease.

>

>Generally, it is a parent escalating their child's illness to get

>attention -- maybe to get a diagnosis of a difficult to diagnose disease.

>Mothers have put all kinds of things into tubes and IVs trying to get

>action

>taken for their child - tests or whatever. You don't read about the MBP

>where mom actually *did* do something -- certainly not on the site you

>mentioned.

>

>It *is* a form of mental illness and the family needs help. Look at that

>woman with nine babies who had SIDS -- it was *her* family that caused

>scientists to " discover " the sids gene only to find out 20 years later that

>she smothered them all on purpose! Don't -- please don't -- discount all

>the _real_ MBP cases that cause needless suffering to children because of

>untreated mental illness. Wouldn't you rather see a child safe and cared

>for?? I'm sorry for every one of you who might have been suspected and I

>doubt that each of us hasn't at least been considered MBP at least once in

>a

>doctor's mind -- but I'm sorrier for those kids whose doctors don't make

>the

>connection who's mommy's have them intubated and treated unnecessarily.

>

>Just IMHO. Flame away.

>

>Kathy

>

>

>------------------------------------------------------------------------

>Brought to you by www.imdn.org - an on-line support group for those

>affected by mitochondrial disease.

><< text3.html >>

[Guest guest]

Michele,I am on a list with other moms that have been falsely accused,the

list owner is careful about making sure it is a tryue false allegation and

the support is great.Lots of moms on the list have gotten their children

home and are stil on the list.Sadly the list is growing rapidly.It is a

onelist like the mitolist it is called Lances.Let the list owner you know me

from the mito list.We need more support and your story is a classic case of

a false allegation.

>From: MichSull@...

>Reply-To: Mitoonelist

>To: Mitoonelist

>Subject: Re: MBP Syndrome

>Date: Thu, 4 Nov 1999 21:30:31 EST

>

>Kathy:

>I was accused of this, fought for my child and asked for a polygraph and

>psychiatric evaluation and was found not guilty. The medical

> " professionals "

>analyzed my son's formula for poisoning, found nothing and realized we were

>not damaging him. You have to understand when these children look typical,

>have intermittent problems, and assertive parents they are quick to

>diagnose

>this sickness.

>I have been accused more than once-and it is overused when doctors are lost

>for answers and treatment plans!!!!

>Michele

>

>------------------------------------------------------------------------

>Brought to you by www.imdn.org - an on-line support group for those

>affected by mitochondrial disease.

><< text3.html >>

[Guest guest]

Kathy;

I'm having trouble understanding what you've written here and you must have

meant someone else and quoted

my email.

You have a more positive view of health care providers than my experience would

warrant. Kaiser was

stupid, obstructive, negligent and I have no doubt if it served someone's whim I

would have been accused.

But they seemed unwilling to care enough to pay attention to do the simple and

obvious in his health care

so it would have had to be an ego issue for MBP to come up. But then doctors are

very ego driven.

Kathy wrote:

> " I object when you say: MBP is generally (I say this only because there are

documented cases of MBP) the

> figment of ignorant doctors and medical science isn't advanced enough to

provided the " evidence " we

> might need to document the disease. "

Object away, but in most cases where someone is accused, the doctors feel if

they don't know then it must

be the parent's fault. I worked in a medical school with first year med

students (I don't have an special

medical knowledge) and I've never encountered a more obnoxious and immature

group of people. They already

felt they knew it all (with rare exceptions). Many doctors cannot accept that

they don't know. And I

will restate it, most cases of accused MBP are based on ignorance not actual

abuse.

> " You don't read about the MBP where mom actually *did* do something --

certainly not on the site you

> mentioned. "

Yes, you DO read about this. These are the rare cases and are usually well

documented. I didn't send any

information about a site. What site are you talking about?

> :It *is* a form of mental illness and the family needs help. "

Yes, it is, no one contests that. But MBP has been over used to blame innocent

people. I know parents

(more than one) who have been accused of MBP by medical staff just because the

medical staff didn't know

what this odd illness (mito) was. One woman actually was accused making up a

husband becuase the day

staff had never seen him when he visited in the evenings. Another friend had

her child subjected to full

body xrays costing over $3000 because the child had once had a broken leg which

is not related to mito in

any way. My friend didn't order or want the xrays but some doctor got it into

her head to look for

evidence of abuse in broken bones and then had the nerve to try to charge my

friend for the xrays. Pretty

stupid stuff and clearly based on ignorance. This happens VERY often to parents

of kids with chronic

illness.

Sue Ellen

[Guest guest]

I could not have expressed that it more clearer terms than you have an I am

so glad you did Jeannine.I must say the only things that are saving our

family from a formal charge and permanently losing Jonah are some of the

things you mentioned.I made sure I took time away from the hospital so that

I was not always there 24/7.This is good now as it shows Jonah was seriously

ill in my absence.Also,our pediatrician kept in close contact with the

hospital and also saw Jonah's setbacks first hand when they occurred in

hospital so it wasn't just my husband and me.Lots of family members have

witnessed Jonah's illnesses out of my absence so that is a saving grace as

well.The hospital did covertly videotape my son and I and saw nothing but a

mom being a mom,which they formally acknowledged and apologised for.However,

it only takes one dr. with the idea in her head to make an allegation,in our

case a SCAN team doc who spent 10-15 min interviewing my husband and I after

Jonah's last metabolic crisis.We had already threatened to sue and asked for

Jonah's removal from that hospital and then a couple of days

later...wham,they tell us this.The other specialists Jonah saw at the

hospital do not say this is a case of msbp but nor will they stand up for us

either,they are just hiding, not getting involved.We only saw a neurologist

for Jonah's mito diagnosis twice,so she did'nt really know us all that

well.Anyway, I guesss the whole point is to be aware and like you said be

prepared and protect yourself.I wish I had known, but I knew next to nothing

about things like that and trusted the docs implicitly.Bad move.I didn't

have the confidence to question whatthey told me about Jonah and what they

wanted to do, I was just so overwhelmed by having a sick child as my first

never got anything worse than a cold.I had never dealt with any doctor other

than a family one and never been sick.All of a sudden there were tubes and

Ivs and strange tests so I went along with it not knowing that they really

were not doing the best for him.You learn though.Well,I hope everyone

becomes more aware of this issue now and can watch for the signs and god

help you if you ever get accused.I will let you know how the trial goes for

us.

>

>Reply-To: Mitoonelist

>To: Mitoonelist

>Subject: Re: MBP Syndrome

>Date: Fri, 05 Nov 1999 09:33:25 -0600

>

>The story last night was on 48 hours not 20/20. Sorry about that. But

>if you missed it, you can go to www.cbs.com and check out their website

>for the story. It is fairly complete.

>

>One of the things that was mentioned last night was that, one of the

>best ways to confirm this diagnosis was to video tape the child and

>parent in the hospital. I was shocked to see one detectives collection

>of videos and even more shocked to see the contents of a couple of the

>videos.... Apparently it is much more common to video in the UK

>though... the US hasn't gotten as aggressive in this regard.

>

>The second most significant thing they mentioned in regard to confirming

>the diagnosis, was that if the child was removed from the parent and did

>well and only became sick when around that parent. I assume this is why

>child protective services is so eager to take custody of a child and

>place them in foster care if indeed there is a suspicion of MBP.

>

>On another note, I think that a child that is undiagnosed is at greater

>risk, because of the previous risk factors that I previously reported.

>These parents tend to be more aggressive about getting a diagnosis, and

>requesting further testing. We also bear the burden of " learning " about

>our child's disease ourselves when doctors are unable or unwilling to

>find the answers. But having a diagnosis does not protect anyone from

>being accused, nor does it preclude a parent from MBP. It seems that

>many of the legitimate cases, start with some sort of medical issue and

>then it is embellished or exaggerated, or aggravated.

>

>With the lack of knowledge in the medical community about mitochondrial

>diseases, this can't help but put these families at greater risk. Our

>children don't fit into the regular criteria and they, many times don't

>respond to " classic " treatments. But you can protect yourself and your

>child from this type of accusation by doing a couple things.

>

>1) Make sure that other people witness your child's uniqueness and

>unusual medical issues. Whether this be from grandparents, teachers,

>baby-sitters or health care professionals. Do your best to make sure

>that others are aware and observe the behaviors and illnesses. Then it

>is not just your word against everyone else, and it can't be said that

>it only happens when in the mom's care. We've even made unannounced

>trips to the ped's office when something bazaar was going on, just so he

>could see what I'd been talking about. I've called nurses into the room

>to witness and evaluate when things happened so that it is documented in

>her hospital record.... and although it is difficult to leave a sick

>child, it does the nursing staff a world of good to have to see and deal

>with what you do for a few minutes while you take a break. I've you

>never ever leave, then it's easily said that he is only sick when your

>around.

>

>2) It is crucial to have a primary care doc that follows and documents

>your child's episodes and problems. He can add his expertise as well as

>his confirmation from periodic visits that will lend credibility to you

>as the parent. If your in a hospital, it is crucial to have an

>attending that is willing to be responsible for your child while there.

>When you get lost in the shuffle of residents and seeing who ever is on

>service, they are more likely to jump to conclusions because they don't

>know you or your child. If your child has a rare metabolic disease,

>then you are certainly entitled to have a primary care doc at your

>children's hospital that will supervise their care. We use a Children's

>hospital that is 80 miles away, and our ped neuro is always the one that

>coordinates care, regardless of why she is admitted. This eliminates

>the need for a new doc to start all over and jump to any conclusions....

>although it doesn't always work that way.

>

>Fifteen years ago, when Genny was two years old, she was hospitalized at

>our local hospital for about two weeks with a paralytic illeus. She was

>very sick and was not taking any thing by mouth for most of that time,

>as well as having her stomach drained by a tube thru her nose until her

>gut kicked in again. Toward the end of her stay she developed profound

>bradycardia. She was discharged and referred for immediate

>hospitalization at our children's hospital for a cardiac evaluation.

>She was barely eating anything, as she had been NPO for days, but she

>was taking clear and thickened liquids well, although her diet was very

>restricted, because our ped want to go very slowly so as not to lose any

>ground. The resident that was assigned to her, accused me of trying to

>starve her, and I was furious. I'll never forget that day.... but

>fortunately for us, I called the ped at home, who contacted her GI at

>that hospital and the situation was clarified, and the resident removed

>from her case... But that's how easy it can happen - he didn't take the

>time to read her entire history, nor did he care to believe me. The

>attending and the ped put a stop to it, and for us, the issue was

>closed.

>

>From that time on, I requested that we have an attending that was

>familiar with my girls, on service during any admission. If that was

>not possible, then they ALWAYS spoke with the doc that was covering and

>made sure that the situation was clarified. Otherwise I suspect that it

>would have happened again and again, given the unique nature of

>mito/metabolic symptoms and the complexity of Caitlin's disease.

>

>If you can't work this out, then have your primary care doc write a

>protocol letter and summary about your child and their illness. Again,

>it's further documentation of his medical situation.

>

>I think it is too easy for some docs to assume that it must be the mom

>when they can't find any answer to the child's problems.... and this

>has to impact innocent people. But it is a fact that it (MBP) does

>happen, and it is no different than a doc assuming that your child

>doesn't have leukemia because he comes from a good family... and not

>pursuing an evaluation for that. I feel very bad for anyone that has

>been falsely accused, but I feel even worse for the innocent children

>that are victims of MBP.

>

>Protect yourself, and your child and be proactive now. Make sure that

>you have an adequate documentation of your child's condition in his

>chart. Have one doc to coordinate the care, and do what you can to make

>sure that others can confirm what you say. It's sad to think this way,

>but if you feel you are at risk, protect yourself now, and avoid trying

>to prove yourself innocent later....

>

>Jeannine

>

>

>------------------------------------------------------------------------

>Brought to you by www.imdn.org - an on-line support group for those

>affected by mitochondrial disease.

><< text3.html >>

[Guest guest]

The story last night was on 48 hours not 20/20. Sorry about that. But

if you missed it, you can go to www.cbs.com and check out their website

for the story. It is fairly complete.

One of the things that was mentioned last night was that, one of the

best ways to confirm this diagnosis was to video tape the child and

parent in the hospital. I was shocked to see one detectives collection

of videos and even more shocked to see the contents of a couple of the

videos.... Apparently it is much more common to video in the UK

though... the US hasn't gotten as aggressive in this regard.

The second most significant thing they mentioned in regard to confirming

the diagnosis, was that if the child was removed from the parent and did

well and only became sick when around that parent. I assume this is why

child protective services is so eager to take custody of a child and

place them in foster care if indeed there is a suspicion of MBP.

On another note, I think that a child that is undiagnosed is at greater

risk, because of the previous risk factors that I previously reported.

These parents tend to be more aggressive about getting a diagnosis, and

requesting further testing. We also bear the burden of " learning " about

our child's disease ourselves when doctors are unable or unwilling to

find the answers. But having a diagnosis does not protect anyone from

being accused, nor does it preclude a parent from MBP. It seems that

many of the legitimate cases, start with some sort of medical issue and

then it is embellished or exaggerated, or aggravated.

With the lack of knowledge in the medical community about mitochondrial

diseases, this can't help but put these families at greater risk. Our

children don't fit into the regular criteria and they, many times don't

respond to " classic " treatments. But you can protect yourself and your

child from this type of accusation by doing a couple things.

1) Make sure that other people witness your child's uniqueness and

unusual medical issues. Whether this be from grandparents, teachers,

baby-sitters or health care professionals. Do your best to make sure

that others are aware and observe the behaviors and illnesses. Then it

is not just your word against everyone else, and it can't be said that

it only happens when in the mom's care. We've even made unannounced

trips to the ped's office when something bazaar was going on, just so he

could see what I'd been talking about. I've called nurses into the room

to witness and evaluate when things happened so that it is documented in

her hospital record.... and although it is difficult to leave a sick

child, it does the nursing staff a world of good to have to see and deal

with what you do for a few minutes while you take a break. I've you

never ever leave, then it's easily said that he is only sick when your

around.

2) It is crucial to have a primary care doc that follows and documents

your child's episodes and problems. He can add his expertise as well as

his confirmation from periodic visits that will lend credibility to you

as the parent. If your in a hospital, it is crucial to have an

attending that is willing to be responsible for your child while there.

When you get lost in the shuffle of residents and seeing who ever is on

service, they are more likely to jump to conclusions because they don't

know you or your child. If your child has a rare metabolic disease,

then you are certainly entitled to have a primary care doc at your

children's hospital that will supervise their care. We use a Children's

hospital that is 80 miles away, and our ped neuro is always the one that

coordinates care, regardless of why she is admitted. This eliminates

the need for a new doc to start all over and jump to any conclusions....

although it doesn't always work that way.

Fifteen years ago, when Genny was two years old, she was hospitalized at

our local hospital for about two weeks with a paralytic illeus. She was

very sick and was not taking any thing by mouth for most of that time,

as well as having her stomach drained by a tube thru her nose until her

gut kicked in again. Toward the end of her stay she developed profound

bradycardia. She was discharged and referred for immediate

hospitalization at our children's hospital for a cardiac evaluation.

She was barely eating anything, as she had been NPO for days, but she

was taking clear and thickened liquids well, although her diet was very

restricted, because our ped want to go very slowly so as not to lose any

ground. The resident that was assigned to her, accused me of trying to

starve her, and I was furious. I'll never forget that day.... but

fortunately for us, I called the ped at home, who contacted her GI at

that hospital and the situation was clarified, and the resident removed

from her case... But that's how easy it can happen - he didn't take the

time to read her entire history, nor did he care to believe me. The

attending and the ped put a stop to it, and for us, the issue was

closed.

From that time on, I requested that we have an attending that was

familiar with my girls, on service during any admission. If that was

not possible, then they ALWAYS spoke with the doc that was covering and

made sure that the situation was clarified. Otherwise I suspect that it

would have happened again and again, given the unique nature of

mito/metabolic symptoms and the complexity of Caitlin's disease.

If you can't work this out, then have your primary care doc write a

protocol letter and summary about your child and their illness. Again,

it's further documentation of his medical situation.

I think it is too easy for some docs to assume that it must be the mom

when they can't find any answer to the child's problems.... and this

has to impact innocent people. But it is a fact that it (MBP) does

happen, and it is no different than a doc assuming that your child

doesn't have leukemia because he comes from a good family... and not

pursuing an evaluation for that. I feel very bad for anyone that has

been falsely accused, but I feel even worse for the innocent children

that are victims of MBP.

Protect yourself, and your child and be proactive now. Make sure that

you have an adequate documentation of your child's condition in his

chart. Have one doc to coordinate the care, and do what you can to make

sure that others can confirm what you say. It's sad to think this way,

but if you feel you are at risk, protect yourself now, and avoid trying

to prove yourself innocent later....

Jeannine