RE: Re: HELP mom accused of abuse, suspect metabolic disorder()

[Guest guest]

Sharon,

Do not be nervous I just hit 41 on Nov. 9th. We can not remember everything about all the kids on this list, our own kids have so much going on I think we are doing well remembering all their problems. Cameron has confirmed GERD, esophageal dismotility, low tone, dysphasia, esophagitis, right aberrant subclavin artery, failure to thrive, skeletal anomalies, severe speech delay, and SCAD gene mutations with elevated ethylmalonic acid. He has suspected mitochondrial cytopathy. We have not had a fresh muscle biopsy and he is responding well to COQ10 and Riboflavin.

-----Original Message----- Sent: Saturday, December 14, 2002 6:00 PMTo: Mito Subject: Re: HELP mom accused of abuse, suspect metabolic disorder(),Does your son have a diagnosis? I apologize that I can't remember. I have a hard time remembering details about individuals in this group. Maybe I should be nervous. I have a birthday this week and will hit the big 4-O!!Sharon > > > > I'm hoping someone may be able to provide some information or > > assistance. I have a nephew who is almost 2, has been failure to > > thrive since birth with food aversion, instigating a 3-month NICU > > stay. He has developmental delay and joint laxity. He has a history > > of reflux with PEG tube placement. He has cyclical weight gain and > > loss, and cyclical vomiting. The doctors say that this is non-> organic > > failure to thrive and mom, my sis-in-law, is going through a horrid > > CPS investigation. > > On Sunday, things went from way bad to worse. No one could wake my > > nephew, , and after a 911 call and transportation to the ER, > > was found to have a blood clot in his left brain with > swelling, > > and was having seizure after seizure after seizure. They have > managed > > to stablize the seizures, but his bp is still low and he has been > > running intermittent fevers and we have been told that if he makes > > it, he will likely have irreversible brain damage. > > The doctors said initially that the blood clot was the result of > > blunt force trauma, and the police investigated my sis-in-law. > There > > were no external signs of head injury and CT of the neck was > > negative. Eyes are ok. Spinal tap was negative for meningitis. > Blood > > work normal. He is showing no response to painful stimuli on the > > right, but some on the left. > > We had just convinced the pediatrician to allow to see a > > metabolic physician in Seattle on Friday before this happened. I'm > > afraid we were too late. If any of you have any suggestions, > > thoughts, tests you might feel are indicated, etc. Please please > let > > me know. You can email me at abrahamson6@a... Thanks so much. > > > > > > > >

[Guest guest]

Sharon,

Do not be nervous I just hit 41 on Nov. 9th. We can not remember everything about all the kids on this list, our own kids have so much going on I think we are doing well remembering all their problems. Cameron has confirmed GERD, esophageal dismotility, low tone, dysphasia, esophagitis, right aberrant subclavin artery, failure to thrive, skeletal anomalies, severe speech delay, and SCAD gene mutations with elevated ethylmalonic acid. He has suspected mitochondrial cytopathy. We have not had a fresh muscle biopsy and he is responding well to COQ10 and Riboflavin.

-----Original Message----- Sent: Saturday, December 14, 2002 6:00 PMTo: Mito Subject: Re: HELP mom accused of abuse, suspect metabolic disorder(),Does your son have a diagnosis? I apologize that I can't remember. I have a hard time remembering details about individuals in this group. Maybe I should be nervous. I have a birthday this week and will hit the big 4-O!!Sharon > > > > I'm hoping someone may be able to provide some information or > > assistance. I have a nephew who is almost 2, has been failure to > > thrive since birth with food aversion, instigating a 3-month NICU > > stay. He has developmental delay and joint laxity. He has a history > > of reflux with PEG tube placement. He has cyclical weight gain and > > loss, and cyclical vomiting. The doctors say that this is non-> organic > > failure to thrive and mom, my sis-in-law, is going through a horrid > > CPS investigation. > > On Sunday, things went from way bad to worse. No one could wake my > > nephew, , and after a 911 call and transportation to the ER, > > was found to have a blood clot in his left brain with > swelling, > > and was having seizure after seizure after seizure. They have > managed > > to stablize the seizures, but his bp is still low and he has been > > running intermittent fevers and we have been told that if he makes > > it, he will likely have irreversible brain damage. > > The doctors said initially that the blood clot was the result of > > blunt force trauma, and the police investigated my sis-in-law. > There > > were no external signs of head injury and CT of the neck was > > negative. Eyes are ok. Spinal tap was negative for meningitis. > Blood > > work normal. He is showing no response to painful stimuli on the > > right, but some on the left. > > We had just convinced the pediatrician to allow to see a > > metabolic physician in Seattle on Friday before this happened. I'm > > afraid we were too late. If any of you have any suggestions, > > thoughts, tests you might feel are indicated, etc. Please please > let > > me know. You can email me at abrahamson6@a... Thanks so much. > > > > > > > >

[Guest guest]

Sharon,

Do not be nervous I just hit 41 on Nov. 9th. We can not remember everything about all the kids on this list, our own kids have so much going on I think we are doing well remembering all their problems. Cameron has confirmed GERD, esophageal dismotility, low tone, dysphasia, esophagitis, right aberrant subclavin artery, failure to thrive, skeletal anomalies, severe speech delay, and SCAD gene mutations with elevated ethylmalonic acid. He has suspected mitochondrial cytopathy. We have not had a fresh muscle biopsy and he is responding well to COQ10 and Riboflavin.

-----Original Message----- Sent: Saturday, December 14, 2002 6:00 PMTo: Mito Subject: Re: HELP mom accused of abuse, suspect metabolic disorder(),Does your son have a diagnosis? I apologize that I can't remember. I have a hard time remembering details about individuals in this group. Maybe I should be nervous. I have a birthday this week and will hit the big 4-O!!Sharon > > > > I'm hoping someone may be able to provide some information or > > assistance. I have a nephew who is almost 2, has been failure to > > thrive since birth with food aversion, instigating a 3-month NICU > > stay. He has developmental delay and joint laxity. He has a history > > of reflux with PEG tube placement. He has cyclical weight gain and > > loss, and cyclical vomiting. The doctors say that this is non-> organic > > failure to thrive and mom, my sis-in-law, is going through a horrid > > CPS investigation. > > On Sunday, things went from way bad to worse. No one could wake my > > nephew, , and after a 911 call and transportation to the ER, > > was found to have a blood clot in his left brain with > swelling, > > and was having seizure after seizure after seizure. They have > managed > > to stablize the seizures, but his bp is still low and he has been > > running intermittent fevers and we have been told that if he makes > > it, he will likely have irreversible brain damage. > > The doctors said initially that the blood clot was the result of > > blunt force trauma, and the police investigated my sis-in-law. > There > > were no external signs of head injury and CT of the neck was > > negative. Eyes are ok. Spinal tap was negative for meningitis. > Blood > > work normal. He is showing no response to painful stimuli on the > > right, but some on the left. > > We had just convinced the pediatrician to allow to see a > > metabolic physician in Seattle on Friday before this happened. I'm > > afraid we were too late. If any of you have any suggestions, > > thoughts, tests you might feel are indicated, etc. Please please > let > > me know. You can email me at abrahamson6@a... Thanks so much. > > > > > > > >

[Guest guest]

He made it clear that he believed either Ariana was faking or it was me that had a problem (presumably he meant Munchausen's by proxy). I was just stunned

We went Friday to see our Metabolicist in town...first off , let me say I know some very confident woman docs but this one is older and I think somewhere along the line, she must have taken on this air of 'I have to prove myself even harder' kinda attitude.

anyway, they happened to put us in the room next to the where the docs do thier stuff (b/c it is a floating sort of clinic) and I heard her telling the residents about us. She said 'he is THOUGHT to have mitochondrial disease, even tho his labs are normal and his enzyme are normal (not true) and there is no identified deletion" and then I didn't hear the rest. Then when the resident came in to do the visit before her, she said something like "since we are treating this like mitochondrial disease"...so one bad attitude passed on to another potentially very good doctor. Then when the main doc was in the room and we were talking about the CoQ not working and not SEEING any results from the carnitor, she was like...well since we don't really have

an identified defect, it could be a problem knowing what things will help the most. So then I said well, we know he doens't move CoQ through the electron transport chain in complexes I+III and II+III so it seems to me it is possibly all sitting there somewhere and she didn't say a thing.

Then I asked her what she made of this heart problem and she was like...'thats why I had you sign a release so we can get the report from him'...When I told the resident what the problem was, I was reading what t he cardiologist wrote on my paper...the head doc was still like, well I will have to see it before I could say anything...she even went so far as to get me to see one of the cardiologist at her floating group...and I was like--what would be the point of that and she said, well a better pair of eyes. The guy we have is great...20 years in it...she still might n ot believe it!!!

I am like WHATEVER...the bottom line is...if SHE didn't SEE the muscle biopsy or the echo, then it must not exist ...she is the same one that when, I dropped off Dr Shoffners report said to me...If I concur, I will call you back and talk to you! If you concur...If you concur!!! Dr Shoffner is the leading diagnostic doc in the country (maybe the world) for mito and she has had one pt who died shortly after she started treating him...just whatever...she is super-ticked that we go to Boston...I am thinking of n ot using her anymore but don't want to look like one of those crazy moms. I absolutely dread seeing her...we are supposed to go back in five months...yuck yuck yuck!

didn't mean to write a book,,,

deb (mom to andrew...COMPLEX I AND IV, I+III AND II+III...ha ha)

[Guest guest]

He made it clear that he believed either Ariana was faking or it was me that had a problem (presumably he meant Munchausen's by proxy). I was just stunned

We went Friday to see our Metabolicist in town...first off , let me say I know some very confident woman docs but this one is older and I think somewhere along the line, she must have taken on this air of 'I have to prove myself even harder' kinda attitude.

anyway, they happened to put us in the room next to the where the docs do thier stuff (b/c it is a floating sort of clinic) and I heard her telling the residents about us. She said 'he is THOUGHT to have mitochondrial disease, even tho his labs are normal and his enzyme are normal (not true) and there is no identified deletion" and then I didn't hear the rest. Then when the resident came in to do the visit before her, she said something like "since we are treating this like mitochondrial disease"...so one bad attitude passed on to another potentially very good doctor. Then when the main doc was in the room and we were talking about the CoQ not working and not SEEING any results from the carnitor, she was like...well since we don't really have

an identified defect, it could be a problem knowing what things will help the most. So then I said well, we know he doens't move CoQ through the electron transport chain in complexes I+III and II+III so it seems to me it is possibly all sitting there somewhere and she didn't say a thing.

Then I asked her what she made of this heart problem and she was like...'thats why I had you sign a release so we can get the report from him'...When I told the resident what the problem was, I was reading what t he cardiologist wrote on my paper...the head doc was still like, well I will have to see it before I could say anything...she even went so far as to get me to see one of the cardiologist at her floating group...and I was like--what would be the point of that and she said, well a better pair of eyes. The guy we have is great...20 years in it...she still might n ot believe it!!!

I am like WHATEVER...the bottom line is...if SHE didn't SEE the muscle biopsy or the echo, then it must not exist ...she is the same one that when, I dropped off Dr Shoffners report said to me...If I concur, I will call you back and talk to you! If you concur...If you concur!!! Dr Shoffner is the leading diagnostic doc in the country (maybe the world) for mito and she has had one pt who died shortly after she started treating him...just whatever...she is super-ticked that we go to Boston...I am thinking of n ot using her anymore but don't want to look like one of those crazy moms. I absolutely dread seeing her...we are supposed to go back in five months...yuck yuck yuck!

didn't mean to write a book,,,

deb (mom to andrew...COMPLEX I AND IV, I+III AND II+III...ha ha)

[Guest guest]

He made it clear that he believed either Ariana was faking or it was me that had a problem (presumably he meant Munchausen's by proxy). I was just stunned

We went Friday to see our Metabolicist in town...first off , let me say I know some very confident woman docs but this one is older and I think somewhere along the line, she must have taken on this air of 'I have to prove myself even harder' kinda attitude.

anyway, they happened to put us in the room next to the where the docs do thier stuff (b/c it is a floating sort of clinic) and I heard her telling the residents about us. She said 'he is THOUGHT to have mitochondrial disease, even tho his labs are normal and his enzyme are normal (not true) and there is no identified deletion" and then I didn't hear the rest. Then when the resident came in to do the visit before her, she said something like "since we are treating this like mitochondrial disease"...so one bad attitude passed on to another potentially very good doctor. Then when the main doc was in the room and we were talking about the CoQ not working and not SEEING any results from the carnitor, she was like...well since we don't really have

an identified defect, it could be a problem knowing what things will help the most. So then I said well, we know he doens't move CoQ through the electron transport chain in complexes I+III and II+III so it seems to me it is possibly all sitting there somewhere and she didn't say a thing.

Then I asked her what she made of this heart problem and she was like...'thats why I had you sign a release so we can get the report from him'...When I told the resident what the problem was, I was reading what t he cardiologist wrote on my paper...the head doc was still like, well I will have to see it before I could say anything...she even went so far as to get me to see one of the cardiologist at her floating group...and I was like--what would be the point of that and she said, well a better pair of eyes. The guy we have is great...20 years in it...she still might n ot believe it!!!

I am like WHATEVER...the bottom line is...if SHE didn't SEE the muscle biopsy or the echo, then it must not exist ...she is the same one that when, I dropped off Dr Shoffners report said to me...If I concur, I will call you back and talk to you! If you concur...If you concur!!! Dr Shoffner is the leading diagnostic doc in the country (maybe the world) for mito and she has had one pt who died shortly after she started treating him...just whatever...she is super-ticked that we go to Boston...I am thinking of n ot using her anymore but don't want to look like one of those crazy moms. I absolutely dread seeing her...we are supposed to go back in five months...yuck yuck yuck!

didn't mean to write a book,,,

deb (mom to andrew...COMPLEX I AND IV, I+III AND II+III...ha ha)

[Guest guest]

Why in the WORLD would she run anyone through the ringer like that???

If she concurs, my butt . . . !

Makes me want to smack her! Or maybe just strangle her! At least a good kick in the shins!

If she concurs . . . . . .

Too bad you don't live in town...we would become inseperable friend I am sure and then we would tag-team all the idiots out there...townspeople and physicians alike!

I am sure i nher case, that she hasn't a clue! She obviously has diagnosed all her other pts with precision and perfection and therefore they have an easy life...lol...

My thought exactly on the expletives and the physical force she deserves...good thing some people have learned self-control...wish everyone would...what a wonderful world that would be!

ha ha ha

deb

[Guest guest]

Why in the WORLD would she run anyone through the ringer like that???

If she concurs, my butt . . . !

Makes me want to smack her! Or maybe just strangle her! At least a good kick in the shins!

If she concurs . . . . . .

Too bad you don't live in town...we would become inseperable friend I am sure and then we would tag-team all the idiots out there...townspeople and physicians alike!

I am sure i nher case, that she hasn't a clue! She obviously has diagnosed all her other pts with precision and perfection and therefore they have an easy life...lol...

My thought exactly on the expletives and the physical force she deserves...good thing some people have learned self-control...wish everyone would...what a wonderful world that would be!

ha ha ha

deb

[Guest guest]

Why in the WORLD would she run anyone through the ringer like that???

If she concurs, my butt . . . !

Makes me want to smack her! Or maybe just strangle her! At least a good kick in the shins!

If she concurs . . . . . .

Too bad you don't live in town...we would become inseperable friend I am sure and then we would tag-team all the idiots out there...townspeople and physicians alike!

I am sure i nher case, that she hasn't a clue! She obviously has diagnosed all her other pts with precision and perfection and therefore they have an easy life...lol...

My thought exactly on the expletives and the physical force she deserves...good thing some people have learned self-control...wish everyone would...what a wonderful world that would be!

ha ha ha

deb

[Guest guest]

I am like WHATEVER...the bottom line is...if SHE didn't SEE the muscle biopsy or the echo, then it must not exist

good lord, Deb, what kind of lousy docs do you guys have down there anyway??? This is just totally ridiculous. Like you need one more stress in your life to be dealing with a yoyo like this.

I'm indignant just reading about it.

Maggie

[Guest guest]

I am like WHATEVER...the bottom line is...if SHE didn't SEE the muscle biopsy or the echo, then it must not exist

good lord, Deb, what kind of lousy docs do you guys have down there anyway??? This is just totally ridiculous. Like you need one more stress in your life to be dealing with a yoyo like this.

I'm indignant just reading about it.

Maggie

[Guest guest]

I am like WHATEVER...the bottom line is...if SHE didn't SEE the muscle biopsy or the echo, then it must not exist

good lord, Deb, what kind of lousy docs do you guys have down there anyway??? This is just totally ridiculous. Like you need one more stress in your life to be dealing with a yoyo like this.

I'm indignant just reading about it.

Maggie

[Guest guest]

good lord, Deb, what kind of lousy docs do you guys have down there anyway???

I know what you mean...I keep trying to talk my friend Shamayn into moving down here...she also has a child with Mito and she says 'heck no with those doctors you have'...they aren't all bad...our nephro, neuro, gastro, opto and cardiologist are all excellent docs but they also freely admit they don't know much about this and are great at taking cues from Dr Korson...

no wonder there aren't any other known mito kids in our city of over a Million...they are probably all sent to our metabolicist first...lol...

I actually found a girl from the list who just moved about an hour and a half from here and is using that same awful pediatrician we had when we got the diagnosis...her child has a known seizure disorder and he wont give her a neurology referral...and she sees this metabolicist and that's all she has...at least I have a few good ones...

deb

[Guest guest]

good lord, Deb, what kind of lousy docs do you guys have down there anyway???

I know what you mean...I keep trying to talk my friend Shamayn into moving down here...she also has a child with Mito and she says 'heck no with those doctors you have'...they aren't all bad...our nephro, neuro, gastro, opto and cardiologist are all excellent docs but they also freely admit they don't know much about this and are great at taking cues from Dr Korson...

no wonder there aren't any other known mito kids in our city of over a Million...they are probably all sent to our metabolicist first...lol...

I actually found a girl from the list who just moved about an hour and a half from here and is using that same awful pediatrician we had when we got the diagnosis...her child has a known seizure disorder and he wont give her a neurology referral...and she sees this metabolicist and that's all she has...at least I have a few good ones...

deb

[Guest guest]

good lord, Deb, what kind of lousy docs do you guys have down there anyway???

I know what you mean...I keep trying to talk my friend Shamayn into moving down here...she also has a child with Mito and she says 'heck no with those doctors you have'...they aren't all bad...our nephro, neuro, gastro, opto and cardiologist are all excellent docs but they also freely admit they don't know much about this and are great at taking cues from Dr Korson...

no wonder there aren't any other known mito kids in our city of over a Million...they are probably all sent to our metabolicist first...lol...

I actually found a girl from the list who just moved about an hour and a half from here and is using that same awful pediatrician we had when we got the diagnosis...her child has a known seizure disorder and he wont give her a neurology referral...and she sees this metabolicist and that's all she has...at least I have a few good ones...

deb

[Guest guest]

Well then, , according to physician logic, you too must surely be abusing your child! (absolutely kidding) I'm sorry for the sarcasm. The longer I've thought about this, the madder I've gotten.

Ariana has atypical absence status. She gets Ativan in very large doses nearly daily. After a certain point, she must be taken to the hospital so they can observe for respiratory affects (never has happened). The children's hospital is over an hour away from us, so we take her to the nearest hospital. The last time we were there, I pulled the physician aside to ask him some questions. He made it clear that he believed either Ariana was faking or it was me that had a problem (presumably he meant Munchausen's by proxy). I was just stunned. All the video EEG's easily proving all this seizure activity, and he has seen her for five minutes and makes THIS evaluation without asking for a full history. Even when I told him, he looked like he thought I was making it up.

This whole subject just thoroughly irritates me. Not a good attitude early on a Sunday morning, I know, but it just does.

Sorry for the ranting,

RE: Re: HELP mom accused of abuse, suspect metabolic disorder()

Sharon,

Do not be nervous I just hit 41 on Nov. 9th. We can not remember everything about all the kids on this list, our own kids have so much going on I think we are doing well remembering all their problems. Cameron has confirmed GERD, esophageal dismotility, low tone, dysphasia, esophagitis, right aberrant subclavin artery, failure to thrive, skeletal anomalies, severe speech delay, and SCAD gene mutations with elevated ethylmalonic acid. He has suspected mitochondrial cytopathy. We have not had a fresh muscle biopsy and he is responding well to COQ10 and Riboflavin.

-----Original Message----- Sent: Saturday, December 14, 2002 6:00 PMTo: Mito Subject: Re: HELP mom accused of abuse, suspect metabolic disorder(),Does your son have a diagnosis? I apologize that I can't remember. I have a hard time remembering details about individuals in this group. Maybe I should be nervous. I have a birthday this week and will hit the big 4-O!!Sharon > > > > I'm hoping someone may be able to provide some information or > > assistance. I have a nephew who is almost 2, has been failure to > > thrive since birth with food aversion, instigating a 3-month NICU > > stay. He has developmental delay and joint laxity. He has a history > > of reflux with PEG tube placement. He has cyclical weight gain and > > loss, and cyclical vomiting. The doctors say that this is non-> organic > > failure to thrive and mom, my sis-in-law, is going through a horrid > > CPS investigation. > > On Sunday, things went from way bad to worse. No one could wake my > > nephew, , and after a 911 call and transportation to the ER, > > was found to have a blood clot in his left brain with > swelling, > > and was having seizure after seizure after seizure. They have > managed > > to stablize the seizures, but his bp is still low and he has been > > running intermittent fevers and we have been told that if he makes > > it, he will likely have irreversible brain damage. > > The doctors said initially that the blood clot was the result of > > blunt force trauma, and the police investigated my sis-in-law. > There > > were no external signs of head injury and CT of the neck was > > negative. Eyes are ok. Spinal tap was negative for meningitis. > Blood > > work normal. He is showing no response to painful stimuli on the > > right, but some on the left. > > We had just convinced the pediatrician to allow to see a > > metabolic physician in Seattle on Friday before this happened. I'm > > afraid we were too late. If any of you have any suggestions, > > thoughts, tests you might feel are indicated, etc. Please please > let > > me know. You can email me at abrahamson6@a... Thanks so much. > > > > > > > >

[Guest guest]

Well then, , according to physician logic, you too must surely be abusing your child! (absolutely kidding) I'm sorry for the sarcasm. The longer I've thought about this, the madder I've gotten.

Ariana has atypical absence status. She gets Ativan in very large doses nearly daily. After a certain point, she must be taken to the hospital so they can observe for respiratory affects (never has happened). The children's hospital is over an hour away from us, so we take her to the nearest hospital. The last time we were there, I pulled the physician aside to ask him some questions. He made it clear that he believed either Ariana was faking or it was me that had a problem (presumably he meant Munchausen's by proxy). I was just stunned. All the video EEG's easily proving all this seizure activity, and he has seen her for five minutes and makes THIS evaluation without asking for a full history. Even when I told him, he looked like he thought I was making it up.

This whole subject just thoroughly irritates me. Not a good attitude early on a Sunday morning, I know, but it just does.

Sorry for the ranting,

RE: Re: HELP mom accused of abuse, suspect metabolic disorder()

Sharon,

Do not be nervous I just hit 41 on Nov. 9th. We can not remember everything about all the kids on this list, our own kids have so much going on I think we are doing well remembering all their problems. Cameron has confirmed GERD, esophageal dismotility, low tone, dysphasia, esophagitis, right aberrant subclavin artery, failure to thrive, skeletal anomalies, severe speech delay, and SCAD gene mutations with elevated ethylmalonic acid. He has suspected mitochondrial cytopathy. We have not had a fresh muscle biopsy and he is responding well to COQ10 and Riboflavin.

-----Original Message----- Sent: Saturday, December 14, 2002 6:00 PMTo: Mito Subject: Re: HELP mom accused of abuse, suspect metabolic disorder(),Does your son have a diagnosis? I apologize that I can't remember. I have a hard time remembering details about individuals in this group. Maybe I should be nervous. I have a birthday this week and will hit the big 4-O!!Sharon > > > > I'm hoping someone may be able to provide some information or > > assistance. I have a nephew who is almost 2, has been failure to > > thrive since birth with food aversion, instigating a 3-month NICU > > stay. He has developmental delay and joint laxity. He has a history > > of reflux with PEG tube placement. He has cyclical weight gain and > > loss, and cyclical vomiting. The doctors say that this is non-> organic > > failure to thrive and mom, my sis-in-law, is going through a horrid > > CPS investigation. > > On Sunday, things went from way bad to worse. No one could wake my > > nephew, , and after a 911 call and transportation to the ER, > > was found to have a blood clot in his left brain with > swelling, > > and was having seizure after seizure after seizure. They have > managed > > to stablize the seizures, but his bp is still low and he has been > > running intermittent fevers and we have been told that if he makes > > it, he will likely have irreversible brain damage. > > The doctors said initially that the blood clot was the result of > > blunt force trauma, and the police investigated my sis-in-law. > There > > were no external signs of head injury and CT of the neck was > > negative. Eyes are ok. Spinal tap was negative for meningitis. > Blood > > work normal. He is showing no response to painful stimuli on the > > right, but some on the left. > > We had just convinced the pediatrician to allow to see a > > metabolic physician in Seattle on Friday before this happened. I'm > > afraid we were too late. If any of you have any suggestions, > > thoughts, tests you might feel are indicated, etc. Please please > let > > me know. You can email me at abrahamson6@a... Thanks so much. > > > > > > > >

[Guest guest]

Ditch her!!! She is not going to help if she does not believe something is wrong with him

I have thought of this too...she is the only metabolicist in town...I am going to ask Korson (who by degree is a metabolicist) if he thinks I need her...I am going to explain the situation and see what he says...I trust him completely so if he says keep her I will and if he says ditch her I will be cheering inside...

deb

[Guest guest]

Ditch her!!! She is not going to help if she does not believe something is wrong with him

I have thought of this too...she is the only metabolicist in town...I am going to ask Korson (who by degree is a metabolicist) if he thinks I need her...I am going to explain the situation and see what he says...I trust him completely so if he says keep her I will and if he says ditch her I will be cheering inside...

deb

[Guest guest]

You took the words right out of mouth: IF I CONCUR?????? What an arrogant bit*h!!!! How dare she??? If she knows even a nickel's worth of information on mito, she has to know the hell we go through!!! Why in the WORLD would she run anyone through the ringer like that???

If she concurs, my butt . . . !

Makes me want to smack her! Or maybe just strangle her! At least a good kick in the shins!

If she concurs . . . . . .

Ha!

Re: Re: HELP mom accused of abuse, suspect metabolic disorder()

He made it clear that he believed either Ariana was faking or it was me that had a problem (presumably he meant Munchausen's by proxy). I was just stunnedWe went Friday to see our Metabolicist in town...first off , let me say I know some very confident woman docs but this one is older and I think somewhere along the line, she must have taken on this air of 'I have to prove myself even harder' kinda attitude. anyway, they happened to put us in the room next to the where the docs do thier stuff (b/c it is a floating sort of clinic) and I heard her telling the residents about us. She said 'he is THOUGHT to have mitochondrial disease, even tho his labs are normal and his enzyme are normal (not true) and there is no identified deletion" and then I didn't hear the rest. Then when the resident came in to do the visit before her, she said something like "since we are treating this like mitochondrial disease"...so one bad attitude passed on to another potentially very good doctor. Then when the main doc was in the room and we were talking about the CoQ not working and not SEEING any results from the carnitor, she was like...well since we don't really havean identified defect, it could be a problem knowing what things will help the most. So then I said well, we know he doens't move CoQ through the electron transport chain in complexes I+III and II+III so it seems to me it is possibly all sitting there somewhere and she didn't say a thing. Then I asked her what she made of this heart problem and she was like...'thats why I had you sign a release so we can get the report from him'...When I told the resident what the problem was, I was reading what t he cardiologist wrote on my paper...the head doc was still like, well I will have to see it before I could say anything...she even went so far as to get me to see one of the cardiologist at her floating group...and I was like--what would be the point of that and she said, well a better pair of eyes. The guy we have is great...20 years in it...she still might n ot believe it!!!I am like WHATEVER...the bottom line is...if SHE didn't SEE the muscle biopsy or the echo, then it must not exist ...she is the same one that when, I dropped off Dr Shoffners report said to me...If I concur, I will call you back and talk to you! If you concur...If you concur!!! Dr Shoffner is the leading diagnostic doc in the country (maybe the world) for mito and she has had one pt who died shortly after she started treating him...just whatever...she is super-ticked that we go to Boston...I am thinking of n ot using her anymore but don't want to look like one of those crazy moms. I absolutely dread seeing her...we are supposed to go back in five months...yuck yuck yuck!didn't mean to write a book,,,deb (mom to andrew...COMPLEX I AND IV, I+III AND II+III...ha ha) Please contact mito-owner with any problems or questions.

[Guest guest]

You took the words right out of mouth: IF I CONCUR?????? What an arrogant bit*h!!!! How dare she??? If she knows even a nickel's worth of information on mito, she has to know the hell we go through!!! Why in the WORLD would she run anyone through the ringer like that???

If she concurs, my butt . . . !

Makes me want to smack her! Or maybe just strangle her! At least a good kick in the shins!

If she concurs . . . . . .

Ha!

Re: Re: HELP mom accused of abuse, suspect metabolic disorder()

He made it clear that he believed either Ariana was faking or it was me that had a problem (presumably he meant Munchausen's by proxy). I was just stunnedWe went Friday to see our Metabolicist in town...first off , let me say I know some very confident woman docs but this one is older and I think somewhere along the line, she must have taken on this air of 'I have to prove myself even harder' kinda attitude. anyway, they happened to put us in the room next to the where the docs do thier stuff (b/c it is a floating sort of clinic) and I heard her telling the residents about us. She said 'he is THOUGHT to have mitochondrial disease, even tho his labs are normal and his enzyme are normal (not true) and there is no identified deletion" and then I didn't hear the rest. Then when the resident came in to do the visit before her, she said something like "since we are treating this like mitochondrial disease"...so one bad attitude passed on to another potentially very good doctor. Then when the main doc was in the room and we were talking about the CoQ not working and not SEEING any results from the carnitor, she was like...well since we don't really havean identified defect, it could be a problem knowing what things will help the most. So then I said well, we know he doens't move CoQ through the electron transport chain in complexes I+III and II+III so it seems to me it is possibly all sitting there somewhere and she didn't say a thing. Then I asked her what she made of this heart problem and she was like...'thats why I had you sign a release so we can get the report from him'...When I told the resident what the problem was, I was reading what t he cardiologist wrote on my paper...the head doc was still like, well I will have to see it before I could say anything...she even went so far as to get me to see one of the cardiologist at her floating group...and I was like--what would be the point of that and she said, well a better pair of eyes. The guy we have is great...20 years in it...she still might n ot believe it!!!I am like WHATEVER...the bottom line is...if SHE didn't SEE the muscle biopsy or the echo, then it must not exist ...she is the same one that when, I dropped off Dr Shoffners report said to me...If I concur, I will call you back and talk to you! If you concur...If you concur!!! Dr Shoffner is the leading diagnostic doc in the country (maybe the world) for mito and she has had one pt who died shortly after she started treating him...just whatever...she is super-ticked that we go to Boston...I am thinking of n ot using her anymore but don't want to look like one of those crazy moms. I absolutely dread seeing her...we are supposed to go back in five months...yuck yuck yuck!didn't mean to write a book,,,deb (mom to andrew...COMPLEX I AND IV, I+III AND II+III...ha ha) Please contact mito-owner with any problems or questions.

[Guest guest]

You took the words right out of mouth: IF I CONCUR?????? What an arrogant bit*h!!!! How dare she??? If she knows even a nickel's worth of information on mito, she has to know the hell we go through!!! Why in the WORLD would she run anyone through the ringer like that???

If she concurs, my butt . . . !

Makes me want to smack her! Or maybe just strangle her! At least a good kick in the shins!

If she concurs . . . . . .

Ha!

Re: Re: HELP mom accused of abuse, suspect metabolic disorder()

He made it clear that he believed either Ariana was faking or it was me that had a problem (presumably he meant Munchausen's by proxy). I was just stunnedWe went Friday to see our Metabolicist in town...first off , let me say I know some very confident woman docs but this one is older and I think somewhere along the line, she must have taken on this air of 'I have to prove myself even harder' kinda attitude. anyway, they happened to put us in the room next to the where the docs do thier stuff (b/c it is a floating sort of clinic) and I heard her telling the residents about us. She said 'he is THOUGHT to have mitochondrial disease, even tho his labs are normal and his enzyme are normal (not true) and there is no identified deletion" and then I didn't hear the rest. Then when the resident came in to do the visit before her, she said something like "since we are treating this like mitochondrial disease"...so one bad attitude passed on to another potentially very good doctor. Then when the main doc was in the room and we were talking about the CoQ not working and not SEEING any results from the carnitor, she was like...well since we don't really havean identified defect, it could be a problem knowing what things will help the most. So then I said well, we know he doens't move CoQ through the electron transport chain in complexes I+III and II+III so it seems to me it is possibly all sitting there somewhere and she didn't say a thing. Then I asked her what she made of this heart problem and she was like...'thats why I had you sign a release so we can get the report from him'...When I told the resident what the problem was, I was reading what t he cardiologist wrote on my paper...the head doc was still like, well I will have to see it before I could say anything...she even went so far as to get me to see one of the cardiologist at her floating group...and I was like--what would be the point of that and she said, well a better pair of eyes. The guy we have is great...20 years in it...she still might n ot believe it!!!I am like WHATEVER...the bottom line is...if SHE didn't SEE the muscle biopsy or the echo, then it must not exist ...she is the same one that when, I dropped off Dr Shoffners report said to me...If I concur, I will call you back and talk to you! If you concur...If you concur!!! Dr Shoffner is the leading diagnostic doc in the country (maybe the world) for mito and she has had one pt who died shortly after she started treating him...just whatever...she is super-ticked that we go to Boston...I am thinking of n ot using her anymore but don't want to look like one of those crazy moms. I absolutely dread seeing her...we are supposed to go back in five months...yuck yuck yuck!didn't mean to write a book,,,deb (mom to andrew...COMPLEX I AND IV, I+III AND II+III...ha ha) Please contact mito-owner with any problems or questions.

[Guest guest]

Deb,

Ditch her!!! She is not going to help if she does not believe something is wrong with him and she can and probably will taint the other doctors in the clinic. Some of these docs are just out of their league and can't handle not being the all powerful, all knowing wizards of OZ!!! I dealt with that one guy like that and moved on ASAP. It is people like that that get the idea that since they don't know, you should not know either and if you think you do, you must be some phycho looking for problems. Oh, that irritates me to the bone.

-----Original Message-----From: VisibleWorship@... Sent: Sunday, December 15, 2002 7:29 AMTo: Mito Subject: Re: Re: HELP mom accused of abuse, suspect metabolic disorder()

He made it clear that he believed either Ariana was faking or it was me that had a problem (presumably he meant Munchausen's by proxy). I was just stunnedWe went Friday to see our Metabolicist in town...first off , let me say I know some very confident woman docs but this one is older and I think somewhere along the line, she must have taken on this air of 'I have to prove myself even harder' kinda attitude. anyway, they happened to put us in the room next to the where the docs do thier stuff (b/c it is a floating sort of clinic) and I heard her telling the residents about us. She said 'he is THOUGHT to have mitochondrial disease, even tho his labs are normal and his enzyme are normal (not true) and there is no identified deletion" and then I didn't hear the rest. Then when the resident came in to do the visit before her, she said something like "since we are treating this like mitochondrial disease"...so one bad attitude passed on to another potentially very good doctor. Then when the main doc was in the room and we were talking about the CoQ not working and not SEEING any results from the carnitor, she was like...well since we don't really havean identified defect, it could be a problem knowing what things will help the most. So then I said well, we know he doens't move CoQ through the electron transport chain in complexes I+III and II+III so it seems to me it is possibly all sitting there somewhere and she didn't say a thing. Then I asked her what she made of this heart problem and she was like...'thats why I had you sign a release so we can get the report from him'...When I told the resident what the problem was, I was reading what t he cardiologist wrote on my paper...the head doc was still like, well I will have to see it before I could say anything...she even went so far as to get me to see one of the cardiologist at her floating group...and I was like--what would be the point of that and she said, well a better pair of eyes. The guy we have is great...20 years in it...she still might n ot believe it!!!I am like WHATEVER...the bottom line is...if SHE didn't SEE the muscle biopsy or the echo, then it must not exist ...she is the same one that when, I dropped off Dr Shoffners report said to me...If I concur, I will call you back and talk to you! If you concur...If you concur!!! Dr Shoffner is the leading diagnostic doc in the country (maybe the world) for mito and she has had one pt who died shortly after she started treating him...just whatever...she is super-ticked that we go to Boston...I am thinking of n ot using her anymore but don't want to look like one of those crazy moms. I absolutely dread seeing her...we are supposed to go back in five months...yuck yuck yuck!didn't mean to write a book,,,deb (mom to andrew...COMPLEX I AND IV, I+III AND II+III...ha ha) Please contact mito-owner with any problems or questions.

[Guest guest]

Deb,

Ditch her!!! She is not going to help if she does not believe something is wrong with him and she can and probably will taint the other doctors in the clinic. Some of these docs are just out of their league and can't handle not being the all powerful, all knowing wizards of OZ!!! I dealt with that one guy like that and moved on ASAP. It is people like that that get the idea that since they don't know, you should not know either and if you think you do, you must be some phycho looking for problems. Oh, that irritates me to the bone.

-----Original Message-----From: VisibleWorship@... Sent: Sunday, December 15, 2002 7:29 AMTo: Mito Subject: Re: Re: HELP mom accused of abuse, suspect metabolic disorder()

He made it clear that he believed either Ariana was faking or it was me that had a problem (presumably he meant Munchausen's by proxy). I was just stunnedWe went Friday to see our Metabolicist in town...first off , let me say I know some very confident woman docs but this one is older and I think somewhere along the line, she must have taken on this air of 'I have to prove myself even harder' kinda attitude. anyway, they happened to put us in the room next to the where the docs do thier stuff (b/c it is a floating sort of clinic) and I heard her telling the residents about us. She said 'he is THOUGHT to have mitochondrial disease, even tho his labs are normal and his enzyme are normal (not true) and there is no identified deletion" and then I didn't hear the rest. Then when the resident came in to do the visit before her, she said something like "since we are treating this like mitochondrial disease"...so one bad attitude passed on to another potentially very good doctor. Then when the main doc was in the room and we were talking about the CoQ not working and not SEEING any results from the carnitor, she was like...well since we don't really havean identified defect, it could be a problem knowing what things will help the most. So then I said well, we know he doens't move CoQ through the electron transport chain in complexes I+III and II+III so it seems to me it is possibly all sitting there somewhere and she didn't say a thing. Then I asked her what she made of this heart problem and she was like...'thats why I had you sign a release so we can get the report from him'...When I told the resident what the problem was, I was reading what t he cardiologist wrote on my paper...the head doc was still like, well I will have to see it before I could say anything...she even went so far as to get me to see one of the cardiologist at her floating group...and I was like--what would be the point of that and she said, well a better pair of eyes. The guy we have is great...20 years in it...she still might n ot believe it!!!I am like WHATEVER...the bottom line is...if SHE didn't SEE the muscle biopsy or the echo, then it must not exist ...she is the same one that when, I dropped off Dr Shoffners report said to me...If I concur, I will call you back and talk to you! If you concur...If you concur!!! Dr Shoffner is the leading diagnostic doc in the country (maybe the world) for mito and she has had one pt who died shortly after she started treating him...just whatever...she is super-ticked that we go to Boston...I am thinking of n ot using her anymore but don't want to look like one of those crazy moms. I absolutely dread seeing her...we are supposed to go back in five months...yuck yuck yuck!didn't mean to write a book,,,deb (mom to andrew...COMPLEX I AND IV, I+III AND II+III...ha ha) Please contact mito-owner with any problems or questions.

[Guest guest]

Deb,

Ditch her!!! She is not going to help if she does not believe something is wrong with him and she can and probably will taint the other doctors in the clinic. Some of these docs are just out of their league and can't handle not being the all powerful, all knowing wizards of OZ!!! I dealt with that one guy like that and moved on ASAP. It is people like that that get the idea that since they don't know, you should not know either and if you think you do, you must be some phycho looking for problems. Oh, that irritates me to the bone.

-----Original Message-----From: VisibleWorship@... Sent: Sunday, December 15, 2002 7:29 AMTo: Mito Subject: Re: Re: HELP mom accused of abuse, suspect metabolic disorder()

He made it clear that he believed either Ariana was faking or it was me that had a problem (presumably he meant Munchausen's by proxy). I was just stunnedWe went Friday to see our Metabolicist in town...first off , let me say I know some very confident woman docs but this one is older and I think somewhere along the line, she must have taken on this air of 'I have to prove myself even harder' kinda attitude. anyway, they happened to put us in the room next to the where the docs do thier stuff (b/c it is a floating sort of clinic) and I heard her telling the residents about us. She said 'he is THOUGHT to have mitochondrial disease, even tho his labs are normal and his enzyme are normal (not true) and there is no identified deletion" and then I didn't hear the rest. Then when the resident came in to do the visit before her, she said something like "since we are treating this like mitochondrial disease"...so one bad attitude passed on to another potentially very good doctor. Then when the main doc was in the room and we were talking about the CoQ not working and not SEEING any results from the carnitor, she was like...well since we don't really havean identified defect, it could be a problem knowing what things will help the most. So then I said well, we know he doens't move CoQ through the electron transport chain in complexes I+III and II+III so it seems to me it is possibly all sitting there somewhere and she didn't say a thing. Then I asked her what she made of this heart problem and she was like...'thats why I had you sign a release so we can get the report from him'...When I told the resident what the problem was, I was reading what t he cardiologist wrote on my paper...the head doc was still like, well I will have to see it before I could say anything...she even went so far as to get me to see one of the cardiologist at her floating group...and I was like--what would be the point of that and she said, well a better pair of eyes. The guy we have is great...20 years in it...she still might n ot believe it!!!I am like WHATEVER...the bottom line is...if SHE didn't SEE the muscle biopsy or the echo, then it must not exist ...she is the same one that when, I dropped off Dr Shoffners report said to me...If I concur, I will call you back and talk to you! If you concur...If you concur!!! Dr Shoffner is the leading diagnostic doc in the country (maybe the world) for mito and she has had one pt who died shortly after she started treating him...just whatever...she is super-ticked that we go to Boston...I am thinking of n ot using her anymore but don't want to look like one of those crazy moms. I absolutely dread seeing her...we are supposed to go back in five months...yuck yuck yuck!didn't mean to write a book,,,deb (mom to andrew...COMPLEX I AND IV, I+III AND II+III...ha ha) Please contact mito-owner with any problems or questions.