nephrologist/endocrinologist?

[Guest guest]

I just brought Allie home from another stay at

the hospital for severe metabolic acidosis that

appears to, once again, have been brought on from

vomitting. This time the ER doc asked about

metabolic testing & suggested a geneticist. Then

the next doc suggested a nephrologist, then my

SIL, the ER resident, suggested an

endocrinologist. I feel that the geneticist was

suggested because of the autism label, despite

there being no " autism gene " . The doc who

suggested the nephrologist said that he believes

the continual abnormal creatinine and BUN/Creat

ratio could be indicative of a metabolic

condition regarding the kidneys. He also stated

that he would suspect there to be " other symptoms

present " for other metabolic conditions. I asked

him how many symptoms he needed, I could go down

the list of presenting symptoms, but knew it

would do no good.

So, here's my question: Can any of you recommend

a GOOD nephrologist and/or endocrinologist? I'm

not against seeing a geneticist, but my bottom

line is that I'm sick and (%*%*$) of seeing one

specialist after another, only to be poo-pooed

and have no answers. More than that, Allie's sick

of seeing them. I'd like to find a few good

recommendations and try to speak by phone to

narrow it down. I'm also not against traveling to

anywhere in the nation, as my region seems to

score a big fat zero on having people who

understand autism, despite the possibility of

Vanderbilt, but I hear good/bad about them.

In addition, we're supposed to see Dr. on

Mar 21, don't know if he can help, gonna try to

send him an email and get his input. Below is a

condensed listing of her issues, just for

brainstorming. If anything jumps out, please post

or email me, maybe if the entire internet gets

involved we can find some answers.

Allie was gfcf for 1.5 yrs, started talking 5

days after casein was removed. Tested mildIgG

elevation to gluten, now has much higher

elevation IgG to rice, stopped diet due to lack

of eating, supplement with 1-2 peptizyde SCD

version/daily. She also gets Kirkman calcium,

zinc, vit E, sometimes Emer-gen-C, sometimes

others, nothing real regular. She also takes

25mg/daily zoloft.

In addition, she has had chronic viral-type

illness since shortly going gfcf in Oct 2001. It

mostly manifests itself as cold, where she will

run high fevers, cough a little, runny nose. Used

to last about 5 day stretches, last few months

has gotten better in duration and severity,

probably displays illness once every 6-8 weeks.

She also has vomitting episodes probably once

every 2-3 months, has required hospitalization 3

times, 7/2004, 7/2005, 3.2006. I feel that it's

probably not a virus because when rotavirus went

through our home about a year ago, she acted

differently and never got dehydrated, despite

having diarrhea for 1 week, and vomitting for 2-3

days.

When Allie has these episodes, it's typically

green/brown, sometimes antifreeze green color.

I've been told it's probably bile, I've wondered

if she's having bowel impactions. This particular

time it was clear liquid with white flecks, then

the last time was green/brown. The hospital said

this time it was not impaction because her

stomach was soft--I tried to explain that did not

mean she couldn't have it, but you know trying to

explain technical medical issues to stupid

doctors. At any rate, they refused to

ultrasound/x-ray, guess what, tonight she was

popping tiny little drops. I'm gonna give some

mag citrate. She's also had some diarrhea last

few months, making me wonder if she does have

some impaction or infection. They wanted a stool

culture but she didn't poop the time we were at

hospital.

If you made it this far, thanks. I'll be happy to

gab more about it, just searching for answers.

Debi

's Little Sister ISBN 1-4137-1724-1

Wanna know my latest praises and gripes? Check out my blog

http://debityree.blogspot.com/

[Guest guest]

>

> I just brought Allie home from another stay at

> the hospital for severe metabolic acidosis that

> appears to, once again, have been brought on from

> vomitting.

What ARE the bun and creatinine numbers?

No abdominal imaging studies ever?

I don't think you need those doc's, I think you need to start with a

gastroenterologist. They sort out vomiting.

There is no point seeing an endocrinologist, there are no good ones.

To get good endocrine help you find someone who is not an

endocrinologist but will try to figure it out.

What do they do for her in the hospital?

Andy

[Guest guest]

My first thought was to have her scoped by one of the few good

gastroenterologists (spelling?). Maybe you can contact Thoughtful

House?

http://www.thoughtfulhouse.org/

Pam

>

> I just brought Allie home from another stay at

> the hospital for severe metabolic acidosis that

> appears to, once again, have been brought on from

> vomitting. This time the ER doc asked about

> metabolic testing & suggested a geneticist. Then

> the next doc suggested a nephrologist, then my

> SIL, the ER resident, suggested an

> endocrinologist. I feel that the geneticist was

> suggested because of the autism label, despite

> there being no " autism gene " . The doc who

> suggested the nephrologist said that he believes

> the continual abnormal creatinine and BUN/Creat

> ratio could be indicative of a metabolic

> condition regarding the kidneys. He also stated

> that he would suspect there to be " other symptoms

> present " for other metabolic conditions. I asked

> him how many symptoms he needed, I could go down

> the list of presenting symptoms, but knew it

> would do no good.

>

> So, here's my question: Can any of you recommend

> a GOOD nephrologist and/or endocrinologist? I'm

> not against seeing a geneticist, but my bottom

> line is that I'm sick and (%*%*$) of seeing one

> specialist after another, only to be poo-pooed

> and have no answers. More than that, Allie's sick

> of seeing them. I'd like to find a few good

> recommendations and try to speak by phone to

> narrow it down. I'm also not against traveling to

> anywhere in the nation, as my region seems to

> score a big fat zero on having people who

> understand autism, despite the possibility of

> Vanderbilt, but I hear good/bad about them.

>

> In addition, we're supposed to see Dr. on

> Mar 21, don't know if he can help, gonna try to

> send him an email and get his input. Below is a

> condensed listing of her issues, just for

> brainstorming. If anything jumps out, please post

> or email me, maybe if the entire internet gets

> involved we can find some answers.

>

> Allie was gfcf for 1.5 yrs, started talking 5

> days after casein was removed. Tested mildIgG

> elevation to gluten, now has much higher

> elevation IgG to rice, stopped diet due to lack

> of eating, supplement with 1-2 peptizyde SCD

> version/daily. She also gets Kirkman calcium,

> zinc, vit E, sometimes Emer-gen-C, sometimes

> others, nothing real regular. She also takes

> 25mg/daily zoloft.

>

> In addition, she has had chronic viral-type

> illness since shortly going gfcf in Oct 2001. It

> mostly manifests itself as cold, where she will

> run high fevers, cough a little, runny nose. Used

> to last about 5 day stretches, last few months

> has gotten better in duration and severity,

> probably displays illness once every 6-8 weeks.

> She also has vomitting episodes probably once

> every 2-3 months, has required hospitalization 3

> times, 7/2004, 7/2005, 3.2006. I feel that it's

> probably not a virus because when rotavirus went

> through our home about a year ago, she acted

> differently and never got dehydrated, despite

> having diarrhea for 1 week, and vomitting for 2-3

> days.

>

> When Allie has these episodes, it's typically

> green/brown, sometimes antifreeze green color.

> I've been told it's probably bile, I've wondered

> if she's having bowel impactions. This particular

> time it was clear liquid with white flecks, then

> the last time was green/brown. The hospital said

> this time it was not impaction because her

> stomach was soft--I tried to explain that did not

> mean she couldn't have it, but you know trying to

> explain technical medical issues to stupid

> doctors. At any rate, they refused to

> ultrasound/x-ray, guess what, tonight she was

> popping tiny little drops. I'm gonna give some

> mag citrate. She's also had some diarrhea last

> few months, making me wonder if she does have

> some impaction or infection. They wanted a stool

> culture but she didn't poop the time we were at

> hospital.

>

> If you made it this far, thanks. I'll be happy to

> gab more about it, just searching for answers.

>

> Debi

>

> 's Little Sister ISBN 1-4137-1724-1

>

> Wanna know my latest praises and gripes? Check out my blog

http://debityree.blogspot.com/

>

[Guest guest]

> In addition, she has had chronic viral-type

> illness since shortly going gfcf in Oct 2001. It

> mostly manifests itself as cold, where she will

> run high fevers, cough a little, runny nose. Used

> to last about 5 day stretches, last few months

> has gotten better in duration and severity,

> probably displays illness once every 6-8 weeks.

> She also has vomitting episodes probably once

> every 2-3 months, has required hospitalization 3

> times, 7/2004, 7/2005, 3.2006. I feel that it's

> probably not a virus because when rotavirus went

> through our home about a year ago, she acted

> differently and never got dehydrated, despite

> having diarrhea for 1 week, and vomitting for 2-3

> days.

As each virus " breaks " on my anti-viral protocol, my #2 will throw up.

So what you are describing does sound like possibly a viral issue, at

least if it was my son.

Dana

[Guest guest]

Hi Here is a recommendation for an endocrinologist from the ck2 list. I have no first hand experience, but many ASD parents have been very pleased. She does initial phone consults. Porte, M.D. 500 East 32nd Street #4 Joplin, Missouri 64804 417-624-1203 (office) 417-624-6547 (fax) Quote "She has about 50 children on the spectrum with a variety of conditions. She is willing to schedule initial telephone consultations to discuss treatment. She is particularly concerned about endocrine dysfunctions and their effects on behavior."Vera"Debi H." <fightingautism@...> wrote: I just brought Allie

home from another stay atthe hospital for severe metabolic acidosis thatappears to, once again, have been brought on fromvomitting. This time the ER doc asked aboutmetabolic testing & suggested a geneticist. Thenthe next doc suggested a nephrologist, then mySIL, the ER resident, suggested anendocrinologist. I feel that the geneticist wassuggested because of the autism label, despitethere being no "autism gene". The doc whosuggested the nephrologist said that he believesthe continual abnormal creatinine and BUN/Creatratio could be indicative of a metaboliccondition regarding the kidneys. He also statedthat he would suspect there to be "other symptomspresent" for other metabolic conditions. I askedhim how many symptoms he needed, I could go downthe list of presenting symptoms, but knew itwould do no good.So, here's my question: Can any of you recommenda GOOD nephrologist and/or endocrinologist?

I'mnot against seeing a geneticist, but my bottomline is that I'm sick and (%*%*$) of seeing onespecialist after another, only to be poo-pooedand have no answers. More than that, Allie's sickof seeing them. I'd like to find a few goodrecommendations and try to speak by phone tonarrow it down. I'm also not against traveling toanywhere in the nation, as my region seems toscore a big fat zero on having people whounderstand autism, despite the possibility ofVanderbilt, but I hear good/bad about them. In addition, we're supposed to see Dr. onMar 21, don't know if he can help, gonna try tosend him an email and get his input. Below is acondensed listing of her issues, just forbrainstorming. If anything jumps out, please postor email me, maybe if the entire internet getsinvolved we can find some answers.Allie was gfcf for 1.5 yrs, started talking 5days after casein was removed. Tested

mildIgGelevation to gluten, now has much higherelevation IgG to rice, stopped diet due to lackof eating, supplement with 1-2 peptizyde SCDversion/daily. She also gets Kirkman calcium,zinc, vit E, sometimes Emer-gen-C, sometimesothers, nothing real regular. She also takes25mg/daily zoloft. In addition, she has had chronic viral-typeillness since shortly going gfcf in Oct 2001. Itmostly manifests itself as cold, where she willrun high fevers, cough a little, runny nose. Usedto last about 5 day stretches, last few monthshas gotten better in duration and severity,probably displays illness once every 6-8 weeks.She also has vomitting episodes probably onceevery 2-3 months, has required hospitalization 3times, 7/2004, 7/2005, 3.2006. I feel that it'sprobably not a virus because when rotavirus wentthrough our home about a year ago, she acteddifferently and never got dehydrated, despitehaving diarrhea for

1 week, and vomitting for 2-3days. When Allie has these episodes, it's typicallygreen/brown, sometimes antifreeze green color.I've been told it's probably bile, I've wonderedif she's having bowel impactions. This particulartime it was clear liquid with white flecks, thenthe last time was green/brown. The hospital saidthis time it was not impaction because herstomach was soft--I tried to explain that did notmean she couldn't have it, but you know trying toexplain technical medical issues to stupiddoctors. At any rate, they refused toultrasound/x-ray, guess what, tonight she waspopping tiny little drops. I'm gonna give somemag citrate. She's also had some diarrhea lastfew months, making me wonder if she does havesome impaction or infection. They wanted a stoolculture but she didn't poop the time we were athospital. If you made it this far, thanks. I'll be happy togab more about it, just

searching for answers. Debi's Little Sister ISBN 1-4137-1724-1 Wanna know my latest praises and gripes? Check out my blog http://debityree.blogspot.com/

[Guest guest]

Pam, you're awesome, email just sent!

Debi

>

> My first thought was to have her scoped by one of the few good

> gastroenterologists (spelling?). Maybe you can contact Thoughtful

> House?

>

> http://www.thoughtfulhouse.org/

>

> Pam

[Guest guest]

The creatine numbers upon entry for dehydration were creat .5 (.5-.8)

and BUN/creat ratio 48.2 (7-25). This was after a day of vomiting, the

day prior she had pigged out on Gerber Meat Sticks, probably ate about

10 jars throughout the day, so she had plenty of protein in her. about

36 hrs later and 7 IV bags her creat was .2 and BUN/Creat was 15.8, but

her urea nitrogen was also low. Her creat is always low, no matter when

we've tested.

We've been to a gastro, she did nothing for the vomiting. Scoped her to

her duodenum, said everything looked perfect, no chance of celiac. I

can't remember if there have ever been other imaging or not, I know not

recently. They treated her symptoms and sent her home, despite my pleas

for additional testing.

I have found a geneticist who does metabolic testing, she sounds to

have some sort of sense, asked about her size, rate of growth, etc. She

also said she wanted to get all the testing that's been done so she

doesn't have to repeat testing or put child through unneccessary

testing. That alone makes me think she might be a descent one, gonna

make appointment. BTW, her anion gap was also high upon admission, high

when leaving, though closer to normal. Her glucose, about 12 hrs after

IV begun was 176.

TIA,

Debi

> What ARE the bun and creatinine numbers?

>

> No abdominal imaging studies ever?

>

> I don't think you need those doc's, I think you need to start with a

> gastroenterologist. They sort out vomiting.

>

> There is no point seeing an endocrinologist, there are no good ones.

> To get good endocrine help you find someone who is not an

> endocrinologist but will try to figure it out.

>

> What do they do for her in the hospital?

>

> Andy

>

[Guest guest]

for Max WALKER

MERCURY TOXICVITY can cause RENAL FAILURE

A GOOD GENETICIST INTERESTED in autism is Professor J. Pandey, Dept.

Microbiology, Med. U. South Carolina, ton SC He will want one teaspoon of

bloof for his genetic studies.

He is not anM.FD. but will recommend several who are, and who specialize in autism, andbelieve it requires 2 things, namely

1. a genetic predisposition to impaired heavy metal excretion.

2 a triggering agent, e.g. mercury

Sincerely,

H.H. Fudenberg, M.D., D.D.G., I.O.M.

226 Edgewater Road

Inman, SC 29349

864-592-8076

nitrf@hotmailcom

From: "max walker" <max.walker@...>Reply-EOHarm To: <EOHarm >Subject: Re: nephrologist/endocrinologist?Date: Mon, 06 Mar 2006 07:38:28 -0800Go see a Homeopath. nephrologist/endocrinologist?> I just brought Allie home from another stay at> the hospital for severe metabolic acidosis that> appears to, once again, have been brought on from> vomitting. This time the ER doc asked about> metabolic testing & suggested a geneticist. Then> the next doc suggested a nephrologist, then my> SIL, the ER resident, suggested an> endocrinologist. I feel that the geneticist was> suggested because of the autism label, despite> there being no "autism gene". The doc who> suggested the nephrologist said that he believes> the continual abnormal creatinine and BUN/Creat> ratio could be indicative of a metabolic> condition regarding the kidneys. He also stated> that he would suspect there to be "other symptoms> present" for other metabolic conditions. I asked> him how many symptoms he needed, I could go down> the list of presenting symptoms, but knew it> would do no good.>> So, here's my question: Can any of you recommend> a GOOD nephrologist and/or endocrinologist? I'm> not against seeing a geneticist, but my bottom> line is that I'm sick and (%*%*$) of seeing one> specialist after another, only to be poo-pooed> and have no answers. More than that, Allie's sick> of seeing them. I'd like to find a few good> recommendations and try to speak by phone to> narrow it down. I'm also not against traveling to> anywhere in the nation, as my region seems to> score a big fat zero on having people who> understand autism, despite the possibility of> Vanderbilt, but I hear good/bad about them.>> In addition, we're supposed to see Dr. on> Mar 21, don't know if he can help, gonna try to> send him an email and get his input. Below is a> condensed listing of her issues, just for> brainstorming. If anything jumps out, please post> or email me, maybe if the entire internet gets> involved we can find some answers.>> Allie was gfcf for 1.5 yrs, started talking 5> days after casein was removed. Tested mildIgG> elevation to gluten, now has much higher> elevation IgG to rice, stopped diet due to lack> of eating, supplement with 1-2 peptizyde SCD> version/daily. She also gets Kirkman calcium,> zinc, vit E, sometimes Emer-gen-C, sometimes> others, nothing real regular. She also takes> 25mg/daily zoloft.>> In addition, she has had chronic viral-type> illness since shortly going gfcf in Oct 2001. It> mostly manifests itself as cold, where she will> run high fevers, cough a little, runny nose. Used> to last about 5 day stretches, last few months> has gotten better in duration and severity,> probably displays illness once every 6-8 weeks.> She also has vomitting episodes probably once> every 2-3 months, has required hospitalization 3> times, 7/2004, 7/2005, 3.2006. I feel that it's> probably not a virus because when rotavirus went> through our home about a year ago, she acted> differently and never got dehydrated, despite> having diarrhea for 1 week, and vomitting for 2-3> days.>> When Allie has these episodes, it's typically> green/brown, sometimes antifreeze green color.> I've been told it's probably bile, I've wondered> if she's having bowel impactions. This particular> time it was clear liquid with white flecks, then> the last time was green/brown. The hospital said> this time it was not impaction because her> stomach was soft--I tried to explain that did not> mean she couldn't have it, but you know trying to> explain technical medical issues to stupid> doctors. At any rate, they refused to> ultrasound/x-ray, guess what, tonight she was> popping tiny little drops. I'm gonna give some> mag citrate. She's also had some diarrhea last> few months, making me wonder if she does have> some impaction or infection. They wanted a stool> culture but she didn't poop the time we were at> hospital.>> If you made it this far, thanks. I'll be happy to> gab more about it, just searching for answers.>> Debi>> 's Little Sister ISBN 1-4137-1724-1>> Wanna know my latest praises and gripes? Check out my bloghttp://debityree.blogspot.com/>>>>

[Guest guest]

for Max WALKER

MERCURY TOXICVITY can cause RENAL FAILURE

A GOOD GENETICIST INTERESTED in autism is Professor J. Pandey, Dept.

Microbiology, Med. U. South Carolina, ton SC He will want one teaspoon of

bloof for his genetic studies.

He is not anM.FD. but will recommend several who are, and who specialize in autism, andbelieve it requires 2 things, namely

1. a genetic predisposition to impaired heavy metal excretion.

2 a triggering agent, e.g. mercury

Sincerely,

H.H. Fudenberg, M.D., D.D.G., I.O.M.

226 Edgewater Road

Inman, SC 29349

864-592-8076

nitrf@hotmailcom

From: "max walker" <max.walker@...>Reply-EOHarm To: <EOHarm >Subject: Re: nephrologist/endocrinologist?Date: Mon, 06 Mar 2006 07:38:28 -0800Go see a Homeopath. nephrologist/endocrinologist?> I just brought Allie home from another stay at> the hospital for severe metabolic acidosis that> appears to, once again, have been brought on from> vomitting. This time the ER doc asked about> metabolic testing & suggested a geneticist. Then> the next doc suggested a nephrologist, then my> SIL, the ER resident, suggested an> endocrinologist. I feel that the geneticist was> suggested because of the autism label, despite> there being no "autism gene". The doc who> suggested the nephrologist said that he believes> the continual abnormal creatinine and BUN/Creat> ratio could be indicative of a metabolic> condition regarding the kidneys. He also stated> that he would suspect there to be "other symptoms> present" for other metabolic conditions. I asked> him how many symptoms he needed, I could go down> the list of presenting symptoms, but knew it> would do no good.>> So, here's my question: Can any of you recommend> a GOOD nephrologist and/or endocrinologist? I'm> not against seeing a geneticist, but my bottom> line is that I'm sick and (%*%*$) of seeing one> specialist after another, only to be poo-pooed> and have no answers. More than that, Allie's sick> of seeing them. I'd like to find a few good> recommendations and try to speak by phone to> narrow it down. I'm also not against traveling to> anywhere in the nation, as my region seems to> score a big fat zero on having people who> understand autism, despite the possibility of> Vanderbilt, but I hear good/bad about them.>> In addition, we're supposed to see Dr. on> Mar 21, don't know if he can help, gonna try to> send him an email and get his input. Below is a> condensed listing of her issues, just for> brainstorming. If anything jumps out, please post> or email me, maybe if the entire internet gets> involved we can find some answers.>> Allie was gfcf for 1.5 yrs, started talking 5> days after casein was removed. Tested mildIgG> elevation to gluten, now has much higher> elevation IgG to rice, stopped diet due to lack> of eating, supplement with 1-2 peptizyde SCD> version/daily. She also gets Kirkman calcium,> zinc, vit E, sometimes Emer-gen-C, sometimes> others, nothing real regular. She also takes> 25mg/daily zoloft.>> In addition, she has had chronic viral-type> illness since shortly going gfcf in Oct 2001. It> mostly manifests itself as cold, where she will> run high fevers, cough a little, runny nose. Used> to last about 5 day stretches, last few months> has gotten better in duration and severity,> probably displays illness once every 6-8 weeks.> She also has vomitting episodes probably once> every 2-3 months, has required hospitalization 3> times, 7/2004, 7/2005, 3.2006. I feel that it's> probably not a virus because when rotavirus went> through our home about a year ago, she acted> differently and never got dehydrated, despite> having diarrhea for 1 week, and vomitting for 2-3> days.>> When Allie has these episodes, it's typically> green/brown, sometimes antifreeze green color.> I've been told it's probably bile, I've wondered> if she's having bowel impactions. This particular> time it was clear liquid with white flecks, then> the last time was green/brown. The hospital said> this time it was not impaction because her> stomach was soft--I tried to explain that did not> mean she couldn't have it, but you know trying to> explain technical medical issues to stupid> doctors. At any rate, they refused to> ultrasound/x-ray, guess what, tonight she was> popping tiny little drops. I'm gonna give some> mag citrate. She's also had some diarrhea last> few months, making me wonder if she does have> some impaction or infection. They wanted a stool> culture but she didn't poop the time we were at> hospital.>> If you made it this far, thanks. I'll be happy to> gab more about it, just searching for answers.>> Debi>> 's Little Sister ISBN 1-4137-1724-1>> Wanna know my latest praises and gripes? Check out my bloghttp://debityree.blogspot.com/>>>>