Re: standard keto blood tests

[Guest guest]

De...

I just bout peed my pants reading your post! Knowing the lack of

detail our normal nonketo team seems to embrace, I can only imagine

sub human's input! I had an unfortunate conversation with him today

as well...bet he thinks B's patients are a bunch of demanding flakes!

Just had to let you know how much I enjoyed your post! Nan

[Guest guest]

Hey, you. . .there you are! How's things? I just

left you a voice mail message about an hour ago to

tell you this whole story. I know Sevi was on a

carnitine supplement early on. . . had they tested for

carnitine?

Man. . .sub-human is such a good term. . .

When are you moving?

How's out little Sev-meister and the rest of the crew?

From one demanding flake to another. . . --D

=====

DeEtte -- Mom to (, 6, keto-kid since 1/01, med-free, seizures greatly

reduced) and (, 4), sdale, AZ

" I know God would never give me more than I can handle. . .I just wish he didn't

trust me so much. " -- Mother Theresa

__________________________________________________

[Guest guest]

De,

Katera's carnitine level has never been checked. I was told by my "real" keto team (LOL) dietician that they don't like to order the test because it is really expensive...... just to check that one thing is like $400..... and sometimes insurance companies don't like to pay for it. They wanted to just put her on it without having the level checked..... and we did try it for a while but it gave her diarrhea so I insisted we stop.... unless they ran the test. Then they changed their mind and decided it wasn't that big of a deal if she wasn't symptomatic of low carnitine. Just goes to show that even the best of keto teams can be kinda flakey themselves at times...... at least they aren't sub-human! I think I've seen a few neuros in the past that came from the same planet yours did, though! LOL

Patti

standard keto blood tests

For those of you who have real keto-teams or anywayhave the diet monitored, can you let me know whattests are standard and how frequently? Am I wrong inassuming that carnitine seems to be a fairlyfrequently tested thing?Here's why I'm asking. . .My non-keto-team is really on my nerves. Our neurohas a partner who is the most sub-human (this is myhusband's term for him) MD I've ever met. Anytimewe've called and he's been on call -- it's beentrouble. He's rude, insensitive and condesending.Anyway. . . we need to have some bloodwork redonebecause a couple months ago we had a draw that cameback high on liver enzymes. I had had to request thatblood be drawn -- this was nearly 6 months into thediet. I was surprised by the lack of detail that cameback -- just basic stuff -- CBC, lipid profile, etc. Since we need to run these again, I called the ketonurse and asked for a prescription for carnitinelevel. Just curious, since it seems that many of youhave this done and I keep seeing carnitine come up asa question mark for many of our kids. The nursecalled back today and said that my neuro is onvacation and that the doctor on call (the sub-human)refused the test saying there was no reason to have itrun. My husband went through the ceiling and calledhim back -- the sub-human neuro hung up on him (noware you getting the picture of where the derogatoryterm sub-human comes in?). Anyway, this isn't the first time we've had anencounter like this and I think we're going to reporthim to the hospital and possible to the state medicalboard. I'd just like to be armed with someinformation before we take these steps. Plus -- Ireally think these tests are important and I want tomake sure that 's being monitored appropriately. I know I can get our family practice doc to prescribetests -- but she doesn't know enough about the diet toknow what should be done.Any info would be appreciated! Thanks!--D=====DeEtte -- Mom to (, 6, keto-kid since 1/01, med-free, seizures greatly reduced) and (, 4), sdale, AZ"I know God would never give me more than I can handle. . .I just wish he didn't trust me so much." -- Mother Theresa__________________________________________________

[Guest guest]

De,

The carnitine level is important if 's been on depakote.

Rohan's levels were low and he was almost grinding to a

halt (doing things painfully slowly) until it was supplemented.

We have resistance to getting it here in the UK too. It is

probably the cost. Our keto dr. orders tests (we usually have

to request/remind about carnitine levels) but does not do anything

to correct deficiencies. They might as well save the costs of the

tests!

I like your term - sub-human. Our term for the school matron

is -alien. Rohan actually dreamt she was one - and it could very

well be the case!

Saro....Rohan's mum

DeEtte Person wrote:

For those of you who have real keto-teams or

anyway

have the diet monitored, can you let me know what

tests are standard and how frequently? Am I wrong in

assuming that carnitine seems to be a fairly

frequently tested thing?

Here's why I'm asking. . .

My non-keto-team is really on my nerves. Our neuro

has a partner who is the most sub-human (this is my

husband's term for him) MD I've ever met. Anytime

we've called and he's been on call -- it's been

trouble. He's rude, insensitive and condesending.

Anyway. . . we need to have some bloodwork redone

because a couple months ago we had a draw that came

back high on liver enzymes. I had had to request that

blood be drawn -- this was nearly 6 months into the

diet. I was surprised by the lack of detail that came

back -- just basic stuff -- CBC, lipid profile, etc.

Since we need to run these again, I called the keto

nurse and asked for a prescription for carnitine

level. Just curious, since it seems that many of you

have this done and I keep seeing carnitine come up as

a question mark for many of our kids. The nurse

called back today and said that my neuro is on

vacation and that the doctor on call (the sub-human)

refused the test saying there was no reason to have it

run. My husband went through the ceiling and called

him back -- the sub-human neuro hung up on him (now

are you getting the picture of where the derogatory

term sub-human comes in?).

Anyway, this isn't the first time we've had an

encounter like this and I think we're going to report

him to the hospital and possible to the state medical

board. I'd just like to be armed with some

information before we take these steps. Plus -- I

really think these tests are important and I want to

make sure that 's being monitored appropriately.

I know I can get our family practice doc to prescribe

tests -- but she doesn't know enough about the diet to

know what should be done.

Any info would be appreciated! Thanks!--D

=====

DeEtte -- Mom to (, 6, keto-kid since 1/01, med-free, seizures

greatly reduced) and (, 4), sdale, AZ

"I know God would never give me more than I can handle. . .I just

wish he didn't trust me so much." -- Mother Theresa

__________________________________________________

[Guest guest]

Dear De

I am sorry to hear about the trouble your having with your neuro. I know

the last thing you have time or energy for is to write complaint letters but

nobody should be treated the way you and your husband have beend by this

man.

As I now have the time to reflect after Kian's death, I have much anger

towards some of the people who made our journey more difficult.

Good luck.

Louise of NZ, Mother to Kian now an Angel.

> standard keto blood tests

>

>

> For those of you who have real keto-teams or anyway

> have the diet monitored, can you let me know what

> tests are standard and how frequently? Am I wrong in

> assuming that carnitine seems to be a fairly

> frequently tested thing?

>

> Here's why I'm asking. . .

>

> My non-keto-team is really on my nerves. Our neuro

> has a partner who is the most sub-human (this is my

> husband's term for him) MD I've ever met. Anytime

> we've called and he's been on call -- it's been

> trouble. He's rude, insensitive and condesending.

>

> Anyway. . . we need to have some bloodwork redone

> because a couple months ago we had a draw that came

> back high on liver enzymes. I had had to request that

> blood be drawn -- this was nearly 6 months into the

> diet. I was surprised by the lack of detail that came

> back -- just basic stuff -- CBC, lipid profile, etc.

> Since we need to run these again, I called the keto

> nurse and asked for a prescription for carnitine

> level. Just curious, since it seems that many of you

> have this done and I keep seeing carnitine come up as

> a question mark for many of our kids. The nurse

> called back today and said that my neuro is on

> vacation and that the doctor on call (the sub-human)

> refused the test saying there was no reason to have it

> run. My husband went through the ceiling and called

> him back -- the sub-human neuro hung up on him (now

> are you getting the picture of where the derogatory

> term sub-human comes in?).

>

> Anyway, this isn't the first time we've had an

> encounter like this and I think we're going to report

> him to the hospital and possible to the state medical

> board. I'd just like to be armed with some

> information before we take these steps. Plus -- I

> really think these tests are important and I want to

> make sure that 's being monitored appropriately.

> I know I can get our family practice doc to prescribe

> tests -- but she doesn't know enough about the diet to

> know what should be done.

>

> Any info would be appreciated! Thanks!--D

>

>

> =====

> DeEtte -- Mom to (, 6, keto-kid since 1/01, med-free,

> seizures greatly reduced) and (, 4), sdale, AZ

>

> " I know God would never give me more than I can handle. . .I just

> wish he didn't trust me so much. " -- Mother Theresa

>

> __________________________________________________

>

[Guest guest]

DeEtte,

I just took my daughter for her 6 month keto follow-up at Hopkins. We had the bloodwork done prior to going, and I have a copy of that was ordered. It's a long list. I would be happy to fax it to you. Then you could have something to "show" to the sub-human neuro. For my daughter, we will repeat the bloodwork in 3 months.

Sandy, 's mom

standard keto blood tests

For those of you who have real keto-teams or anywayhave the diet monitored, can you let me know whattests are standard and how frequently? Am I wrong inassuming that carnitine seems to be a fairlyfrequently tested thing?Here's why I'm asking. . .My non-keto-team is really on my nerves. Our neurohas a partner who is the most sub-human (this is myhusband's term for him) MD I've ever met. Anytimewe've called and he's been on call -- it's beentrouble. He's rude, insensitive and condesending.Anyway. . . we need to have some bloodwork redonebecause a couple months ago we had a draw that cameback high on liver enzymes. I had had to request thatblood be drawn -- this was nearly 6 months into thediet. I was surprised by the lack of detail that cameback -- just basic stuff -- CBC, lipid profile, etc. Since we need to run these again, I called the ketonurse and asked for a prescription for carnitinelevel. Just curious, since it seems that many of youhave this done and I keep seeing carnitine come up asa question mark for many of our kids. The nursecalled back today and said that my neuro is onvacation and that the doctor on call (the sub-human)refused the test saying there was no reason to have itrun. My husband went through the ceiling and calledhim back -- the sub-human neuro hung up on him (noware you getting the picture of where the derogatoryterm sub-human comes in?). Anyway, this isn't the first time we've had anencounter like this and I think we're going to reporthim to the hospital and possible to the state medicalboard. I'd just like to be armed with someinformation before we take these steps. Plus -- Ireally think these tests are important and I want tomake sure that 's being monitored appropriately. I know I can get our family practice doc to prescribetests -- but she doesn't know enough about the diet toknow what should be done.Any info would be appreciated! Thanks!--D=====DeEtte -- Mom to (, 6, keto-kid since 1/01, med-free, seizures greatly reduced) and (, 4), sdale, AZ"I know God would never give me more than I can handle. . .I just wish he didn't trust me so much." -- Mother Theresa__________________________________________________

[Guest guest]

Sometimes these doctors need to be put in their place. They hold themselves a higher level than the rest of us. If you feel the need for additional tests insist on them would suggest to start looking for a new doctor. Good luck and hope all works out well for you.

[Guest guest]

Sandy,

We tried to contact Hopkins so we knew for sure what to ask our Dr's to monitor while is on the diet. (We are in NZ) I haven't heard back, (and don't really expect to)but if we can bypass the contact prolem through someone like you that is fortunate enough to be under their care, our task would be a whole lot easier. I don't expect you to foot the cost of faxing to New Zealand, but is there anyway you can somehow summarise via email??

Love to have something concrete to take to them, not just my own theories!!

Hill (mother to , nearly 5)

standard keto blood tests

For those of you who have real keto-teams or anywayhave the diet monitored, can you let me know whattests are standard and how frequently? Am I wrong inassuming that carnitine seems to be a fairlyfrequently tested thing?Here's why I'm asking. . .My non-keto-team is really on my nerves. Our neurohas a partner who is the most sub-human (this is myhusband's term for him) MD I've ever met. Anytimewe've called and he's been on call -- it's beentrouble. He's rude, insensitive and condesending.Anyway. . . we need to have some bloodwork redonebecause a couple months ago we had a draw that cameback high on liver enzymes. I had had to request thatblood be drawn -- this was nearly 6 months into thediet. I was surprised by the lack of detail that cameback -- just basic stuff -- CBC, lipid profile, etc. Since we need to run these again, I called the ketonurse and asked for a prescription for carnitinelevel. Just curious, since it seems that many of youhave this done and I keep seeing carnitine come up asa question mark for many of our kids. The nursecalled back today and said that my neuro is onvacation and that the doctor on call (the sub-human)refused the test saying there was no reason to have itrun. My husband went through the ceiling and calledhim back -- the sub-human neuro hung up on him (noware you getting the picture of where the derogatoryterm sub-human comes in?). Anyway, this isn't the first time we've had anencounter like this and I think we're going to reporthim to the hospital and possible to the state medicalboard. I'd just like to be armed with someinformation before we take these steps. Plus -- Ireally think these tests are important and I want tomake sure that 's being monitored appropriately. I know I can get our family practice doc to prescribetests -- but she doesn't know enough about the diet toknow what should be done.Any info would be appreciated! Thanks!--D=====DeEtte -- Mom to (, 6, keto-kid since 1/01, med-free, seizures greatly reduced) and (, 4), sdale, AZ"I know God would never give me more than I can handle. . .I just wish he didn't trust me so much." -- Mother Theresa__________________________________________________

[Guest guest]

,

Looks like Coole just posted it!

Sandy

standard keto blood tests

For those of you who have real keto-teams or anywayhave the diet monitored, can you let me know whattests are standard and how frequently? Am I wrong inassuming that carnitine seems to be a fairlyfrequently tested thing?Here's why I'm asking. . .My non-keto-team is really on my nerves. Our neurohas a partner who is the most sub-human (this is myhusband's term for him) MD I've ever met. Anytimewe've called and he's been on call -- it's beentrouble. He's rude, insensitive and condesending.Anyway. . . we need to have some bloodwork redonebecause a couple months ago we had a draw that cameback high on liver enzymes. I had had to request thatblood be drawn -- this was nearly 6 months into thediet. I was surprised by the lack of detail that cameback -- just basic stuff -- CBC, lipid profile, etc. Since we need to run these again, I called the ketonurse and asked for a prescription for carnitinelevel. Just curious, since it seems that many of youhave this done and I keep seeing carnitine come up asa question mark for many of our kids. The nursecalled back today and said that my neuro is onvacation and that the doctor on call (the sub-human)refused the test saying there was no reason to have itrun. My husband went through the ceiling and calledhim back -- the sub-human neuro hung up on him (noware you getting the picture of where the derogatoryterm sub-human comes in?). Anyway, this isn't the first time we've had anencounter like this and I think we're going to reporthim to the hospital and possible to the state medicalboard. I'd just like to be armed with someinformation before we take these steps. Plus -- Ireally think these tests are important and I want tomake sure that 's being monitored appropriately. I know I can get our family practice doc to prescribetests -- but she doesn't know enough about the diet toknow what should be done.Any info would be appreciated! Thanks!--D=====DeEtte -- Mom to (, 6, keto-kid since 1/01, med-free, seizures greatly reduced) and (, 4), sdale, AZ"I know God would never give me more than I can handle. . .I just wish he didn't trust me so much." -- Mother Theresa__________________________________________________

[Guest guest]

Sandy,

Thanks, I asked for it from both of you, as to convince our Dr's they're necessary, I wanted to be able to say that more than one 'reputable' keto centre found all these tests necessary, we (as most) have to battle many funding issues in our wee country, blood work included. As 's list seems to be fairly extensive, and is recommended by Hopkins as well, I'm sure that should be enough ammunition. Thanks a lot to both of you.

Louise, if you read this, we are getting there, are we not??

On another quick note, previous posts re checking PH on 'pool sticks', I have uncovered some, but am not sure they are the right ones for our situation. They test PH, alkalinity, and chlorine,(yeah, yeah, I know this one does not apply!). I dipped the stick in 's urine, and the PH colour was not mentioned (bright yellow) in the readings on the container, the alkalinity showed as '120', miidle of the road on the stick, but I have no idea what this means. Shouldn't 's urine have no signs of alkalinity? If I ask this one at our appt today, I will probably be committed to the neuro ward myself!! Any clues?

On a brighter note, our nightmarish 2 weeks of (hopefully) withdrawl seizures from the last lamictal decrease seems to be coming to an end. We are going to push on, we are dying to give a good break, but he is still exhibiting toxicity signs, and I think we have to step in again now. Give me strength!!!

Hill (mother to in NZ)

standard keto blood tests

For those of you who have real keto-teams or anywayhave the diet monitored, can you let me know whattests are standard and how frequently? Am I wrong inassuming that carnitine seems to be a fairlyfrequently tested thing?Here's why I'm asking. . .My non-keto-team is really on my nerves. Our neurohas a partner who is the most sub-human (this is myhusband's term for him) MD I've ever met. Anytimewe've called and he's been on call -- it's beentrouble. He's rude, insensitive and condesending.Anyway. . . we need to have some bloodwork redonebecause a couple months ago we had a draw that cameback high on liver enzymes. I had had to request thatblood be drawn -- this was nearly 6 months into thediet. I was surprised by the lack of detail that cameback -- just basic stuff -- CBC, lipid profile, etc. Since we need to run these again, I called the ketonurse and asked for a prescription for carnitinelevel. Just curious, since it seems that many of youhave this done and I keep seeing carnitine come up asa question mark for many of our kids. The nursecalled back today and said that my neuro is onvacation and that the doctor on call (the sub-human)refused the test saying there was no reason to have itrun. My husband went through the ceiling and calledhim back -- the sub-human neuro hung up on him (noware you getting the picture of where the derogatoryterm sub-human comes in?). Anyway, this isn't the first time we've had anencounter like this and I think we're going to reporthim to the hospital and possible to the state medicalboard. I'd just like to be armed with someinformation before we take these steps. Plus -- Ireally think these tests are important and I want tomake sure that 's being monitored appropriately. I know I can get our family practice doc to prescribetests -- but she doesn't know enough about the diet toknow what should be done.Any info would be appreciated! Thanks!--D=====DeEtte -- Mom to (, 6, keto-kid since 1/01, med-free, seizures greatly reduced) and (, 4), sdale, AZ"I know God would never give me more than I can handle. . .I just wish he didn't trust me so much." -- Mother Theresa__________________________________________________