need help with finding a metabolic/genetics doctor

[Guest guest]

Hi everyone,

I am currently dealing with a lot of issues with my son with occasional good

days and mostly rough days. We have started treatment for Pandas with zithromax

with some improvement in symptoms but he is in a lot oxidative stress proven

both clinically and by test results. I was waiting for an appointment at CHOP

for a metobolic workup but the autism center got back to me and they will only

give my son a 2 hour appointment with a developmental pediatrician and if that

doctor feels convinced, only then he will refer to a metabolic/genetic doctor.

My pediatrician recommended making a direct appointment with a metobolic

specialist at CHOP but I am not sure which one is good. I have checked

mitoaction.org and they talk a lot about Kennedy Kreiger institute but that is

out of network for us and the whole evaluation there is several thousad dollars.

My question is for those who have got the whole workup done for mito dysfunction

for their kids. Where did you get the workup done? The test that Dr

recommends needs to be done in step by step manner and I am not sure if a

regular lab will do that. If these tests can be done through the pediatrician,

please let me know. I am also looking for a good neurologist in NJ who will be

able to help me with the testing. My son urine porphyrin profile shows extreme

oxidative stress and there are some other signs that suggest mito dysfunction.

While I am working on all the biomedical treatments, I don't want to ignore if

my son has more serious mito issues. Any help would be appreciated.

Thanks

is

[Guest guest]

I would check out Dr rio Trifiletti in NJ for the neurologist. I have heard very good things about him. He treats a lot of PAndAS patients & seems to get the bigger picture. RuthSent from my iPhone

Hi everyone,

I am currently dealing with a lot of issues with my son with occasional good days and mostly rough days. We have started treatment for Pandas with zithromax with some improvement in symptoms but he is in a lot oxidative stress proven both clinically and by test results. I was waiting for an appointment at CHOP for a metobolic workup but the autism center got back to me and they will only give my son a 2 hour appointment with a developmental pediatrician and if that doctor feels convinced, only then he will refer to a metabolic/genetic doctor. My pediatrician recommended making a direct appointment with a metobolic specialist at CHOP but I am not sure which one is good. I have checked mitoaction.org and they talk a lot about Kennedy Kreiger institute but that is out of network for us and the whole evaluation there is several thousad dollars. My question is for those who have got the whole workup done for mito dysfunction for their kids. Where did you get the workup done? The test that Dr recommends needs to be done in step by step manner and I am not sure if a regular lab will do that. If these tests can be done through the pediatrician, please let me know. I am also looking for a good neurologist in NJ who will be able to help me with the testing. My son urine porphyrin profile shows extreme oxidative stress and there are some other signs that suggest mito dysfunction. While I am working on all the biomedical treatments, I don't want to ignore if my son has more serious mito issues. Any help would be appreciated.

Thanks

is

[Guest guest]

oh alexis im sorry you goin thru this now....i dont know much about rx stuff...but.....

what i did thou for my son when he was havin a hard time is i started dropping supps....he was havin to much detox i think with what i was using....i know we use diffrent stuff....but maybe all the fighters has been to ruff on the body....for you son?

not saying it is the case but was the case with mine....also no doubt my son had still has bacteria issues....but finding somthing to help fight the bacteria and not cause stress to the body is key....

i was considering before the mmms...to give my son just mass doses of probiotic he does well on....and no fighters at all...

mito issues can be caused by all the stress to the body and not necessarily the other way around ...just a thought...

channa

To: mb12valtrex Sent: Monday, March 26, 2012 2:25 PMSubject: need help with finding a metabolic/genetics doctor

Hi everyone,I am currently dealing with a lot of issues with my son with occasional good days and mostly rough days. We have started treatment for Pandas with zithromax with some improvement in symptoms but he is in a lot oxidative stress proven both clinically and by test results. I was waiting for an appointment at CHOP for a metobolic workup but the autism center got back to me and they will only give my son a 2 hour appointment with a developmental pediatrician and if that doctor feels convinced, only then he will refer to a metabolic/genetic doctor. My pediatrician recommended making a direct appointment with a metobolic specialist at CHOP but I am not sure which one is good. I have checked mitoaction.org and they talk a lot about Kennedy Kreiger institute but that is out of network for us and the whole evaluation there is several thousad dollars. My question is for those who have got

the whole workup done for mito dysfunction for their kids. Where did you get the workup done? The test that Dr recommends needs to be done in step by step manner and I am not sure if a regular lab will do that. If these tests can be done through the pediatrician, please let me know. I am also looking for a good neurologist in NJ who will be able to help me with the testing. My son urine porphyrin profile shows extreme oxidative stress and there are some other signs that suggest mito dysfunction. While I am working on all the biomedical treatments, I don't want to ignore if my son has more serious mito issues. Any help would be appreciated. Thanksis

[Guest guest]

Thanks Ruth! I havn't called his office yet but when I checked, it seems like he

doesn't accept our insurance. But will try anyways. If anyone has more

suggestions, I will appreciate the help.

Thanks

is

>

> > Hi everyone,

> >

> > I am currently dealing with a lot of issues with my son with occasional good

days and mostly rough days. We have started treatment for Pandas with zithromax

with some improvement in symptoms but he is in a lot oxidative stress proven

both clinically and by test results. I was waiting for an appointment at CHOP

for a metobolic workup but the autism center got back to me and they will only

give my son a 2 hour appointment with a developmental pediatrician and if that

doctor feels convinced, only then he will refer to a metabolic/genetic doctor.

My pediatrician recommended making a direct appointment with a metobolic

specialist at CHOP but I am not sure which one is good. I have checked

mitoaction.org and they talk a lot about Kennedy Kreiger institute but that is

out of network for us and the whole evaluation there is several thousad dollars.

My question is for those who have got the whole workup done for mito dysfunction

for their kids. Where did you get the workup done? The test that Dr

recommends needs to be done in step by step manner and I am not sure if a

regular lab will do that. If these tests can be done through the pediatrician,

please let me know. I am also looking for a good neurologist in NJ who will be

able to help me with the testing. My son urine porphyrin profile shows extreme

oxidative stress and there are some other signs that suggest mito dysfunction.

While I am working on all the biomedical treatments, I don't want to ignore if

my son has more serious mito issues. Any help would be appreciated.

> >

> > Thanks

> > is

> >

> >

>

[Guest guest]

Hi is,Have you ever looked into Mass General? I have only checked out their "ladders" site very briefly bc i cant make a trip out there but maybe that is an option -- i know it isnt super close but may be worth it if they are good? I think Dr. Buie works there (one of the autism GI specialists) as well as other specialists.....Has anyone else had any good luck there? To: mb12valtrex Sent: Tuesday, March 27, 2012 2:45 AM Subject: Re: need help with finding a metabolic/genetics doctor

Thanks Ruth! I havn't called his office yet but when I checked, it seems like he doesn't accept our insurance. But will try anyways. If anyone has more suggestions, I will appreciate the help.

Thanks

is

>

> > Hi everyone,

> >

> > I am currently dealing with a lot of issues with my son with occasional good days and mostly rough days. We have started treatment for Pandas with zithromax with some improvement in symptoms but he is in a lot oxidative stress proven both clinically and by test results. I was waiting for an appointment at CHOP for a metobolic workup but the autism center got back to me and they will only give my son a 2 hour appointment with a developmental pediatrician and if that doctor feels convinced, only then he will refer to a metabolic/genetic doctor. My pediatrician recommended making a direct appointment with a metobolic specialist at CHOP but I am not sure which one is good. I have checked mitoaction.org and they talk a lot about Kennedy Kreiger institute but that is out of network for us and the whole evaluation there is several thousad dollars. My question is for those who have got the whole

workup done for mito dysfunction for their kids. Where did you get the workup done? The test that Dr recommends needs to be done in step by step manner and I am not sure if a regular lab will do that. If these tests can be done through the pediatrician, please let me know. I am also looking for a good neurologist in NJ who will be able to help me with the testing. My son urine porphyrin profile shows extreme oxidative stress and there are some other signs that suggest mito dysfunction. While I am working on all the biomedical treatments, I don't want to ignore if my son has more serious mito issues. Any help would be appreciated.

> >

> > Thanks

> > is

> >

> >

>

[Guest guest]

Hi ,

I briefly checked ladders also but didn't find much info on mito testing and

genetics. If you know any details or if you've heard from someone who had good

experience their in terms of diagnostics (both metabolic and genetic), please

let me know.

Thanks

is

> >

> > > Hi everyone,

> > >

> > > I am currently dealing with a lot of issues with my son with occasional

good days and mostly rough days. We have started treatment for Pandas with

zithromax with some improvement in symptoms but he is in a lot oxidative stress

proven both clinically and by test results. I was waiting for an appointment at

CHOP for a metobolic workup but the autism center got back to me and they will

only give my son a 2 hour appointment with a developmental pediatrician and if

that doctor feels convinced, only then he will refer to a metabolic/genetic

doctor. My pediatrician recommended making a direct appointment with a metobolic

specialist at CHOP but I am not sure which one is good. I have checked

mitoaction.org and they talk a lot about Kennedy Kreiger institute but that is

out of network for us and the whole evaluation there is several thousad dollars.

My question is for those who have got the whole workup done for mito dysfunction

for their kids. Where did you

> get the workup done? The test that Dr recommends needs to be

done in step by step manner and I am not sure if a regular lab will do that. If

these tests can be done through the pediatrician, please let me know. I am also

looking for a good neurologist in NJ who will be able to help me with the

testing. My son urine porphyrin profile shows extreme oxidative stress and there

are some other signs that suggest mito dysfunction. While I am working on all

the biomedical treatments, I don't want to ignore if my son has more serious

mito issues. Any help would be appreciated.

> > >

> > > Thanks

> > > is

> > >

> > >

> >

>