manchausen syndrome by proxy

[Guest guest]

Hey Guys,

I have posted on and off but read everyone postings everyday. My son

has an immune deficiency~hypogamma with specific antibody

deficiency. He has low IGG, IGA, IGM, poor titer responses to the

pneumococcyl and tetanus vaccines. The plan is to trial him off of

the IG this summer and retest everything since he will be turning 3

at the end of August. They are hoping that he will outgrow his

immune problems. has had frequent pansinusitis(all sinuses

infected)which required 4 sinuses surgeries to open him up and get

cultures. Then he is treated with various IV antibiotics and

antifungal to clear them. He has problems with his GI system.

Chronic diarrhea, GERD's, multiple ileus, abdominal distention with

pain. He also has some leftsided joint pain on and off. He recently

started having high blood sugars that was noted when he lost 3

pounds and was eating and drinking nonstop. His fasting glucose was

above 200. He saw the endocrine doctor who thought the steroids

might be the culprit and prescriped Metformin when he is on

steroids. does weekly SQIG infusions at home because of the

documented side effects of IVIG at the hospital. He is in the middle

of a genetic consult for CF because he is a carrier plus he has some

never seen before mutation that might be adding to his symptoms.

has been hospitalized with bronchilitis multiple times and

it is usually when he has a nasty sinus infection. 's doctor

decided Thursday afternoon to put him in the hospital because he had

a nasty sinus infection that wasn't getting better and it was

flaring up his lungs. She thought this way he could get a sinus CT,

have ID, ENT and pulmonology all involved at the sametime. She

thought maybe the ENT doctor could add him to her OR time to get

cultures and open him up if needed etc.. I really did not want to

have him admitted but thought maybe this would work instead of going

to each individual doctor etc... had a sinus CT which showed

a sinus infection particularly in his ethmoids and alittle in his

maxillary. The admitting resident and house doctor were not too

happy in doing his admission since he looked so well. always

looks good. The admitting doctors brought up to his regular doctor

the possibility of manchausen by proxy. She of course stopped that

conversation with them and later brought it up to me. I had just

read in IG living the article about Manchausen a few days prior. I

couldn't believe that they suggested that. She of course reassured

me that she doesn't think that. I called home and started to cry

when I told my husband. Then our regular doctor came back in the

room to tell me something. She saw me crying and I told her I was

telling my husband about the manchausen accusation. She grabbed the

phone from me and told my husband that she wished she had never said

anything because she really doesn't think that at all. Infact, she

said that all of regular doctors do not think that. She then

went on with what the plan was going to be. I am so depressed over

the whole situation. I try my best to advocate for my son and

instead I get accused of pontentially hurting him. I don't think it

is fair just because they don't truely know what is going on with

him that they jump to the conclusion that maybe it is me. Has anyone

else had this happen to them? What can I do to not have this happen

again? I am to the point of giving up with the doctors. Any thoughts

would be appreciated. God Bless!

Mom to 2 year old with a PID

hypogamma with spec antib defic.

newly suggested CVID and many other problems

www.caringbridge. org/visit/ matthewfranson

[Guest guest]

(((HUGS))) Just keep on advocating for your son. We were accused of not

feeding when he was little. In spite of a healthy son who was growing

and gaining and having neutropenia, constant illnesses, etc. Luckily,

like you, our regular doctors knew us and knew that we were feeding him and

they were able to read the lab reports!

I even told one hem that we saw, if you tell me what I am feeding him that

causes neutropenia, I'll change his diet. This doctor was a friend of the

other doctor who thought all of 's problems were lack of caloric intake.

Anyway.started enzymes and he gained weight - started growing and still has

neutropenia.

You are going to meet crazy doctors along the way-you just have to be

prepared. We've met them at every hospital we've been to.

Peace be with you,

Pattie

The Will of God will never take you where the Grace of God won't be with

you.

[Guest guest]

nataliefranson wrote:

The admitting resident and house doctor were not too

> happy in doing his admission since he looked so well. always

> looks good. The admitting doctors brought up to his regular doctor

> the possibility of manchausen by proxy.

She grabbed the

> phone from me and told my husband that she wished she had never said

> anything because she really doesn't think that at all. Infact, she

> said that all of regular doctors do not think that.

Dear , A simple answer is yes. And it can become quite nasty if

the doctors decide to pursue it. What reassures me is that your doctor

has assured you that she does not believe it and that other doctors

don't believe it. There still remains the problem with the admitting

doctors. And that's something that concerns me -- who is in charge

here? the resident and admitting doctor or your doctor? Such a charge

is very serious and I'm hoping that your doctor nipped it in the bud and

got it stopped. However, if you still feel that the admitting doctor is

suspicious of you, I would request that my child be taken away from his

care even if I had to check out of the hospital against advice.

If a doctor makes up his mind that it's Munchausen with as much medical

evidence as you've got of a genetic condition -- that's not a doctor I

want caring for my child! If however, it was just a passing comment

based on the multiple medical needs of your child, then let it go. As

the mother of a chronically ill child, you are going to need the support

of very good doctors. They are there to help you and guide you and take

some of the weight off of you. Alienating them in anger is not going to

get the help he needs. So, talk with your primary, make sure

she is in charge of 's care and let this one go.

I, too, was accused of Munchausen -- but the doctor didn't go so far as

calling Child Protection. He just kept telling me I needed to see a

Psychiatrist! I finally told him to make the appointment. He did. And

that was the first step for getting Katy some real help. The psyc told

me to " change doctors! " Duh!!! At that time I didn't know I could.

So, I'm praying for your peace right now. You've got enough to worry

about without a doctor on a tangent. You'll deal with this just like

you've dealt with everything else -- one day at a time. Stay calm and

continue to give his great care.

I'm glad you've just read the article on Munchausen. You already know

that Moms who really really care are the most likely accused.

And remember what the article says:

" Parents must realize that they -- and not the doctors -- are the people

who must make the decisions about treatment and care. Be patient,

persistent and document everything. "

I'll be praying for you until this is resolved.

In His service,

dale

[Guest guest]

hello ,

my

nataliefranson <nataliefranson@...> wrote:

Hey Guys,

I have posted on and off but read everyone postings everyday. My son

has an immune deficiency~hypogamma with specific antibody

deficiency. He has low IGG, IGA, IGM, poor titer responses to the

pneumococcyl and tetanus vaccines. The plan is to trial him off of

the IG this summer and retest everything since he will be turning 3

at the end of August. They are hoping that he will outgrow his

immune problems. has had frequent pansinusitis(all sinuses

infected)which required 4 sinuses surgeries to open him up and get

cultures. Then he is treated with various IV antibiotics and

antifungal to clear them. He has problems with his GI system.

Chronic diarrhea, GERD's, multiple ileus, abdominal distention with

pain. He also has some leftsided joint pain on and off. He recently

started having high blood sugars that was noted when he lost 3

pounds and was eating and drinking nonstop. His fasting glucose was

above 200. He saw the endocrine doctor who thought the steroids

might be the culprit and prescriped Metformin when he is on

steroids. does weekly SQIG infusions at home because of the

documented side effects of IVIG at the hospital. He is in the middle

of a genetic consult for CF because he is a carrier plus he has some

never seen before mutation that might be adding to his symptoms.

has been hospitalized with bronchilitis multiple times and

it is usually when he has a nasty sinus infection. 's doctor

decided Thursday afternoon to put him in the hospital because he had

a nasty sinus infection that wasn't getting better and it was

flaring up his lungs. She thought this way he could get a sinus CT,

have ID, ENT and pulmonology all involved at the sametime. She

thought maybe the ENT doctor could add him to her OR time to get

cultures and open him up if needed etc.. I really did not want to

have him admitted but thought maybe this would work instead of going

to each individual doctor etc... had a sinus CT which showed

a sinus infection particularly in his ethmoids and alittle in his

maxillary. The admitting resident and house doctor were not too

happy in doing his admission since he looked so well. always

looks good. The admitting doctors brought up to his regular doctor

the possibility of manchausen by proxy. She of course stopped that

conversation with them and later brought it up to me. I had just

read in IG living the article about Manchausen a few days prior. I

couldn't believe that they suggested that. She of course reassured

me that she doesn't think that. I called home and started to cry

when I told my husband. Then our regular doctor came back in the

room to tell me something. She saw me crying and I told her I was

telling my husband about the manchausen accusation. She grabbed the

phone from me and told my husband that she wished she had never said

anything because she really doesn't think that at all. Infact, she

said that all of regular doctors do not think that. She then

went on with what the plan was going to be. I am so depressed over

the whole situation. I try my best to advocate for my son and

instead I get accused of pontentially hurting him. I don't think it

is fair just because they don't truely know what is going on with

him that they jump to the conclusion that maybe it is me. Has anyone

else had this happen to them? What can I do to not have this happen

again? I am to the point of giving up with the doctors. Any thoughts

would be appreciated. God Bless!

Mom to 2 year old with a PID

hypogamma with spec antib defic.

newly suggested CVID and many other problems

www.caringbridge. org/visit/ matthewfranson

---------------------------------

Ahhh...imagining that irresistible " new car " smell?

Check outnew cars at Autos.

[Guest guest]

I am so sorry that you had to hear that and it is good

that your regular docs know that is not the case. I

hate it when a person judges you based on the

presenting facts and not the history, specially when

you tell them about the prior illness history.

Cassie

www.marykay.com/cassieredinger

[Guest guest]

I just wanted you to know that you have my hugs....accusations such as

those are SO sad.....and Dale is so right - Moms who care and are

attentive - well, they are the ones who get whacked with questions and

accusations that forever change the mother's heart. Be strong and

DOCUMENT DOCUMENT DOCUMENT......

It's a tragedy that parents who have CLEAR and Indisputable issues with

their children get put under the microscope....

I get so angry when I see things like this happening to people...

Stay strong and if you need to talk, email me.

HUGS

Stef

>

>

> I am so sorry that you had to hear that and it is good

> that your regular docs know that is not the case. I

> hate it when a person judges you based on the

> presenting facts and not the history, specially when

> you tell them about the prior illness history.

> Cassie

>

> www.marykay.com/cassieredinger

>

[Guest guest]

I'm sorry you had to deal with such a Dr, I would consider filing a

complaint against him. I had a similar issue and he did contact CPS and

thank god I had just gotten copies of all dd's records when they showed up

at my door and they were able to see that yes my dd had issues and no I was

not causing them. They went so far as to contact every last Dr we saw and

even the 0-3 program to get there opinion since we received services from

them too. Thankfully it was totally unfounded but man it strikes serious

fear and rage into the heart of every mother who gets accused. *hugs* hang

in there and at the very least get that Dr removed from your child's care!

[Guest guest]

,

I'm so sorry to hear what you've been through. Prior to my son being

diagnosed, I'd take in to the ER only to be greeted with a roll of the

eyes. As if we don't have enough to worry about and then have the people who's

job it is to help you and your child feel better making a situation worse. This

past week I my husband had to take in due to fever and labored breathing

and of course he was treated like we had no business being there, even after

telling the triage nurse about his IGAD. Turns he had pneumonia and we all

know the earlier you catch it the better. Better safe than sorry. If this were

to happen again I would speak up, you're doing your job as a mom and they need

to do their job as health care providers, end of story. Please know that you

are in my thoughts and prayers. Hugs to you and .

mom to :Selective IGA, GERD, Asthma, Dairy allergies

nataliefranson <nataliefranson@...> wrote:

Hey Guys,

I have posted on and off but read everyone postings everyday. My son

has an immune deficiency~hypogamma with specific antibody

deficiency. He has low IGG, IGA, IGM, poor titer responses to the

pneumococcyl and tetanus vaccines. The plan is to trial him off of

the IG this summer and retest everything since he will be turning 3

at the end of August. They are hoping that he will outgrow his

immune problems. has had frequent pansinusitis(all sinuses

infected)which required 4 sinuses surgeries to open him up and get

cultures. Then he is treated with various IV antibiotics and

antifungal to clear them. He has problems with his GI system.

Chronic diarrhea, GERD's, multiple ileus, abdominal distention with

pain. He also has some leftsided joint pain on and off. He recently

started having high blood sugars that was noted when he lost 3

pounds and was eating and drinking nonstop. His fasting glucose was

above 200. He saw the endocrine doctor who thought the steroids

might be the culprit and prescriped Metformin when he is on

steroids. does weekly SQIG infusions at home because of the

documented side effects of IVIG at the hospital. He is in the middle

of a genetic consult for CF because he is a carrier plus he has some

never seen before mutation that might be adding to his symptoms.

has been hospitalized with bronchilitis multiple times and

it is usually when he has a nasty sinus infection. 's doctor

decided Thursday afternoon to put him in the hospital because he had

a nasty sinus infection that wasn't getting better and it was

flaring up his lungs. She thought this way he could get a sinus CT,

have ID, ENT and pulmonology all involved at the sametime. She

thought maybe the ENT doctor could add him to her OR time to get

cultures and open him up if needed etc.. I really did not want to

have him admitted but thought maybe this would work instead of going

to each individual doctor etc... had a sinus CT which showed

a sinus infection particularly in his ethmoids and alittle in his

maxillary. The admitting resident and house doctor were not too

happy in doing his admission since he looked so well. always

looks good. The admitting doctors brought up to his regular doctor

the possibility of manchausen by proxy. She of course stopped that

conversation with them and later brought it up to me. I had just

read in IG living the article about Manchausen a few days prior. I

couldn't believe that they suggested that. She of course reassured

me that she doesn't think that. I called home and started to cry

when I told my husband. Then our regular doctor came back in the

room to tell me something. She saw me crying and I told her I was

telling my husband about the manchausen accusation. She grabbed the

phone from me and told my husband that she wished she had never said

anything because she really doesn't think that at all. Infact, she

said that all of regular doctors do not think that. She then

went on with what the plan was going to be. I am so depressed over

the whole situation. I try my best to advocate for my son and

instead I get accused of pontentially hurting him. I don't think it

is fair just because they don't truely know what is going on with

him that they jump to the conclusion that maybe it is me. Has anyone

else had this happen to them? What can I do to not have this happen

again? I am to the point of giving up with the doctors. Any thoughts

would be appreciated. God Bless!

Mom to 2 year old with a PID

hypogamma with spec antib defic.

newly suggested CVID and many other problems

www.caringbridge. org/visit/ matthewfranson

---------------------------------

Ahhh...imagining that irresistible " new car " smell?

Check outnew cars at Autos.

[Guest guest]

We were told that we needed parenting classes because we could not identify

a sick child and that we were, in fact, MAKING her sick by bringing her to

the doctor's office so often. GRRRRRR!!!!!

Hang in there!

[Guest guest]

---Im so sorry this happened to you.

I used to go to church with a family who actually had their child

taken away due to this--the state decided to see if anything changed

with the child in a different home--it didnt. But they lost her for

over 3 months. CPS came and took her on her and her twins second birthday.

I havent had the words used, but the intonation was there.

I once had a dr tell me that he was sorry, but he wasnt GOD, and he

couldnt make something be wrong with my boys just bc I needed

attention. I burst into tears on the phone--and he hung up on me.

Then you get things in your head, like--ok, I think the kid is getting

sick--do I take him in? or wait? if I take him in before he looks

REALLY sick, will they believe me? if I wait, he might get MORE sick.....

I hope your little guy is doing better.

valarie

In , Dale Weatherford <dale@...> wrote:

>

> nataliefranson wrote:

> The admitting resident and house doctor were not too

> > happy in doing his admission since he looked so well. always

> > looks good. The admitting doctors brought up to his regular doctor

> > the possibility of manchausen by proxy.

>

>

> She grabbed the

> > phone from me and told my husband that she wished she had never said

> > anything because she really doesn't think that at all. Infact, she

> > said that all of regular doctors do not think that.

>

>

> Dear , A simple answer is yes. And it can become quite

nasty if

> the doctors decide to pursue it. What reassures me is that your doctor

> has assured you that she does not believe it and that other doctors

> don't believe it. There still remains the problem with the admitting

> doctors. And that's something that concerns me -- who is in charge

> here? the resident and admitting doctor or your doctor? Such a

charge

> is very serious and I'm hoping that your doctor nipped it in the bud

and

> got it stopped. However, if you still feel that the admitting

doctor is

> suspicious of you, I would request that my child be taken away from his

> care even if I had to check out of the hospital against advice.

>

> If a doctor makes up his mind that it's Munchausen with as much medical

> evidence as you've got of a genetic condition -- that's not a doctor I

> want caring for my child! If however, it was just a passing comment

> based on the multiple medical needs of your child, then let it go. As

> the mother of a chronically ill child, you are going to need the

support

> of very good doctors. They are there to help you and guide you and

take

> some of the weight off of you. Alienating them in anger is not

going to

> get the help he needs. So, talk with your primary, make sure

> she is in charge of 's care and let this one go.

>

> I, too, was accused of Munchausen -- but the doctor didn't go so far as

> calling Child Protection. He just kept telling me I needed to see a

> Psychiatrist! I finally told him to make the appointment. He did.

And

> that was the first step for getting Katy some real help. The psyc told

> me to " change doctors! " Duh!!! At that time I didn't know I could.

>

> So, I'm praying for your peace right now. You've got enough to worry

> about without a doctor on a tangent. You'll deal with this just like

> you've dealt with everything else -- one day at a time. Stay calm and

> continue to give his great care.

>

> I'm glad you've just read the article on Munchausen. You already know

> that Moms who really really care are the most likely accused.

> And remember what the article says:

>

> " Parents must realize that they -- and not the doctors -- are the

people

> who must make the decisions about treatment and care. Be patient,

> persistent and document everything. "

>

> I'll be praying for you until this is resolved.

>

> In His service,

> dale

>

[Guest guest]

I totally understand where you are coming from-I had to hire a an attorney for

my child in a custody battle with my ex, because he kept saying nothing was

wrong with , that I had munchashen by proxy.

When the child's attorney spoke to every doc and finally got to the Infectious

disease doc-she said that the father says the child looks so well so the mother

must have munchashen by proxy-

He said, yes these children look absolutely wonderful even before they die of

infection-and how dare anyone question specialists, the Children's hospital and

the Mayo clinic who did the bloodwork of forging bloodwork results to placata a

mom with munchashen!!!

I fought this with the ex since the child was 6 months old and he is now 5 ½

years-I received full custody and decision making and eventually he even lost

his supervised visitation, but he still insists I am crazy and have

munchashen!!!

The first pediatrician had, which was the one that my 3 older children had

said I was just being overprotective as a now older mother!!!!

Natuyrally this was the same peditrician who said it was normal to have 10 ear

infections by 12 months-glue ear, multiple hospitalizations from vomiting and

diarheea for failure to thrive and who said my son talked late due to me having

older children (he has classic autism)

I would bet, if we took a nationwide poll of parents of PID kids, that we would

find that at least once, the majority of parents were treated as if their

children's illnesses 'were in their head' and thety were being overprotective,

if not worse.

Praying for you and totally understand!

mom to - autism, Magenis Syndrome, MR, mitral valve

insufficiency, PID, asthma, peripheral neuropathy, apraxia of speech, swallow

delays and dysphasia, hypotonia, G/J tube with Fundoplication coming soon, etc

,etc ,etc

________________________________

From: [mailto: ] On Behalf Of Pattie

Curran

Sent: Saturday, April 21, 2007 11:21 AM

Subject: RE: manchausen syndrome by proxy

(((HUGS))) Just keep on advocating for your son. We were accused of not

feeding when he was little. In spite of a healthy son who was growing

and gaining and having neutropenia, constant illnesses, etc. Luckily,

like you, our regular doctors knew us and knew that we were feeding him and

they were able to read the lab reports!

I even told one hem that we saw, if you tell me what I am feeding him that

causes neutropenia, I'll change his diet. This doctor was a friend of the

other doctor who thought all of 's problems were lack of caloric intake.

Anyway.started enzymes and he gained weight - started growing and still has

neutropenia.

You are going to meet crazy doctors along the way-you just have to be

prepared. We've met them at every hospital we've been to.

Peace be with you,

Pattie

The Will of God will never take you where the Grace of God won't be with

you.

[Guest guest]

,

I'm sorry that your child, and family, is going through such a rough time. Some

of the things you said about glucose irregularities, endocrine, GI, made me

think of another mother in our group who has been through something very similar

-- accusations and all (I believe her child has a metabolic problem and PID).

If you have not already connected with her, and want to talk, let me know and

I'll send her a note.

mom to CVIDer

[Guest guest]

I am sorry that this has been added to your already full " plate " of

things to deal with. Keep up the good fight. You know what is best

for your little guy.... even when you are confused, tired,

frustrated. God chose YOU to be 's mommy for a reason! You

CAN get through this....

Prayers and hugs to you,

[Guest guest]

Hello Guys,

I would like to thank everyone who replied to my posting. It is so

nice to feel supported and get good advice. I had a long talk with

our primary doctor today. I asked her how the subject came up in the

first place. Her remark was the other doctor thought I was too

organized and too involved in his care and knew more that the

average mom. And, plus looks so good. She said that I should

not stop doing what I am doing because this is why looks so

good. She apologized for everything and said she would make sure in

the future that it be known that she doesn't have any suspicion of

this with the newer doctors. She said she does not want me to be

afraid to seek care and worry if he is sick enough to be seen. She

reassured me that 's regular doctors (ID, ENT, and respir)

feel the same way she does. Infact, they had talked about this

awhile back. The ID doctor said if this was the case they would have

seen stuff like blood infections since he has a port or

gastrointestional bugs etc... She said to not give this another

worry or sleepless night because this subject was done. So,

hopefully this is the last time I have to think about it. But, I

will be pretty scared if he ever gets septic! Anyways, thanks again!

It was greatly appreciated!

Mom to 2 year old with a PID

hypogamma with spec antib defic.

newly suggested CVID and many other problems

www.caringbridge. org/visit/ matthewfranson

>

> Hey Guys,

> I have posted on and off but read everyone postings everyday. My

son

> has an immune deficiency~hypogamma with specific antibody

> deficiency. He has low IGG, IGA, IGM, poor titer responses to the

> pneumococcyl and tetanus vaccines. The plan is to trial him off of

> the IG this summer and retest everything since he will be turning

3

> at the end of August. They are hoping that he will outgrow his

> immune problems. has had frequent pansinusitis(all sinuses

> infected)which required 4 sinuses surgeries to open him up and get

> cultures. Then he is treated with various IV antibiotics and

> antifungal to clear them. He has problems with his GI system.

> Chronic diarrhea, GERD's, multiple ileus, abdominal distention

with

> pain. He also has some leftsided joint pain on and off. He

recently

> started having high blood sugars that was noted when he lost 3

> pounds and was eating and drinking nonstop. His fasting glucose

was

> above 200. He saw the endocrine doctor who thought the steroids

> might be the culprit and prescriped Metformin when he is on

> steroids. does weekly SQIG infusions at home because of

the

> documented side effects of IVIG at the hospital. He is in the

middle

> of a genetic consult for CF because he is a carrier plus he has

some

> never seen before mutation that might be adding to his symptoms.

> has been hospitalized with bronchilitis multiple times and

> it is usually when he has a nasty sinus infection. 's

doctor

> decided Thursday afternoon to put him in the hospital because he

had

> a nasty sinus infection that wasn't getting better and it was

> flaring up his lungs. She thought this way he could get a sinus

CT,

> have ID, ENT and pulmonology all involved at the sametime. She

> thought maybe the ENT doctor could add him to her OR time to get

> cultures and open him up if needed etc.. I really did not want to

> have him admitted but thought maybe this would work instead of

going

> to each individual doctor etc... had a sinus CT which

showed

> a sinus infection particularly in his ethmoids and alittle in his

> maxillary. The admitting resident and house doctor were not too

> happy in doing his admission since he looked so well.

always

> looks good. The admitting doctors brought up to his regular doctor

> the possibility of manchausen by proxy. She of course stopped that

> conversation with them and later brought it up to me. I had just

> read in IG living the article about Manchausen a few days prior. I

> couldn't believe that they suggested that. She of course reassured

> me that she doesn't think that. I called home and started to cry

> when I told my husband. Then our regular doctor came back in the

> room to tell me something. She saw me crying and I told her I was

> telling my husband about the manchausen accusation. She grabbed

the

> phone from me and told my husband that she wished she had never

said

> anything because she really doesn't think that at all. Infact, she

> said that all of regular doctors do not think that. She

then

> went on with what the plan was going to be. I am so depressed over

> the whole situation. I try my best to advocate for my son and

> instead I get accused of pontentially hurting him. I don't think

it

> is fair just because they don't truely know what is going on with

> him that they jump to the conclusion that maybe it is me. Has

anyone

> else had this happen to them? What can I do to not have this

happen

> again? I am to the point of giving up with the doctors. Any

thoughts

> would be appreciated. God Bless!

>

> Mom to 2 year old with a PID

> hypogamma with spec antib defic.

> newly suggested CVID and many other problems

>

> www.caringbridge. org/visit/ matthewfranson

>