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have had to deal with doctors here that dont believe in the keto diet - thank goodness they were just in the emergency room. He listened to me but he was quite rude. I am sorry you are having problems like this and wish you luck in the future. I would keep insisting - the doctor might refer your daughter just to have you stop asking :)

Jenn,

You too? We have had doctors who have been horrible to us, as if we are abusing our daughter, by giving her "pats of butter and gobs of whipping cream with oil"......I've had to ask them right back, "Which would you consider abuse, letting a child hit her face on the cement 50 times a day, or restricting what she eats?".....

I get so fed up with those doctors who know nothing, and say an awful lot!

Love,

Kandy

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It must be hard to have to deal with a doctor who doesnt want parental

input. Does it work to invite your doctor over and let him see a

"typical" day in your home? Maybe then he would change his mind about

your input seeing as you are probably the most "in-tune" person with your

daughter.

Can you see any other doc to get a referal to a urologist? The

suggestion has been made that we see a kidney specialist for our son but

the neuro said we should be talking to our gp for the referal.

I have had to deal with doctors here that dont believe in the keto diet

- thank goodness they were just in the emergency room. He listened

to me but he was quite rude. I am sorry you are having problems like

this and wish you luck in the future. I would keep insisting - the

doctor might refer your daughter just to have you stop asking :)

Good luck!

Jenn

Jenn

Scot & Robyn wrote:

Hello list mates,

My Daughter Carlie Jae has been on the ketogenic diet for about

nine

months. she is four and g-tube fed nothing by mouth.

I have had a lot problems since I started the diet. She started

crying

in July and I have tried various solutions to treat the problem.

Carlie Jae's pediatrician decided that the problem was to due with

her

central nervous system causing her to be irritable and we put her

on a

sedative at night and risperdal during the day. She had also

developed

reflux possibly because of the high oil content on the diet. And

so she was put on losec (for acid reflux disease).

In September Carlie Jae got her very first UTI. A second

one followed

sometime in October and then maybe the second one had not cleared

up and

at the end of November another one appeared. While she has

these UTI's

(Urinary Tract Infections) Carlie Jae cries nonstop and is difficult

to

comfort. She screams really loud like something horrible

is being done

to her and then she pees. So I being the best Mom that I

can be decided

that i wanted a referral to an urologist. Because really

I do not want

Carlie to have another UTI. I came into his office wanting

a referral

to an urologist. Well he just blew up at me and said if I

was going to

bring in my own suggestions then i might as well look for another

DR.

For me I am caught in a very difficult position. Carlie is

on the

ketodiet and Dr M is the only Dr in town that will honour the ketodiet.

It is not recognized at the university hospital here where

I live. The

ketogenic diet has brought Carlie's life threatening seizures under

control. I do believe that his manner with me is totally

unprofessional

and unwarranted. I just do not want my daughter to suffer

so much

She is often miserable.

Right now she weighs about 16.8 kgs

is on eight hundrede calories a day

she gets a little more than 575mls of just water a day this is

not

including her water that is mixed with RFC

plus 4 feeds of 184.9 grams

Please Help me

or send me words of soothing advice

Robyn mom of Carlie Jae

"The Ketogenic Diet....a realistic treatment option, NOT

just a last resort!"

List is for parent to parent support only.

It is important to get medical advice from a professional keto team!

Subscribe: ketogenic-subscribe

Unsubscribe: ketogenic-unsubscribe

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I'm wondering what her ratio is? Still pretty high? I know my dietician mentioned that once kids have been on the diet for 6-8 months, they often need a lower ratio...... many will show increased irritability and will start getting sick (colds, flus, infections, etc) more frequently. Could be that the acidic condition their body is in at a high ratio brings the immune system under a lot of stress. That's my best guess.

Patti, mom to Katera

Problems with Pediatrician..need your advice please

Hello list mates,My Daughter Carlie Jae has been on the ketogenic diet for about ninemonths. she is four and g-tube fed nothing by mouth.I have had a lot problems since I started the diet. She started cryingin July and I have tried various solutions to treat the problem.Carlie Jae's pediatrician decided that the problem was to due with hercentral nervous system causing her to be irritable and we put her on asedative at night and risperdal during the day. She had also developedreflux possibly because of the high oil content on the diet. Andso she was put on losec (for acid reflux disease).In September Carlie Jae got her very first UTI. A second one followedsometime in October and then maybe the second one had not cleared up andat the end of November another one appeared. While she has these UTI's(Urinary Tract Infections) Carlie Jae cries nonstop and is difficult tocomfort. She screams really loud like something horrible is being doneto her and then she pees. So I being the best Mom that I can be decidedthat i wanted a referral to an urologist. Because really I do not wantCarlie to have another UTI. I came into his office wanting a referralto an urologist. Well he just blew up at me and said if I was going tobring in my own suggestions then i might as well look for another DR.For me I am caught in a very difficult position. Carlie is on theketodiet and Dr M is the only Dr in town that will honour the ketodiet.It is not recognized at the university hospital here where I live. Theketogenic diet has brought Carlie's life threatening seizures undercontrol. I do believe that his manner with me is totally unprofessionaland unwarranted. I just do not want my daughter to suffer so muchShe is often miserable.Right now she weighs about 16.8 kgsis on eight hundrede calories a dayshe gets a little more than 575mls of just water a day this is notincluding her water that is mixed with RFCplus 4 feeds of 184.9 gramsPlease Help meor send me words of soothing adviceRobyn mom of Carlie Jae

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Dear Robyn:

I am so sorry you are having such trouble. I just finished posting on another list about my history of UTI's. But the advice I was givin after years of drugs to try to stop them was. Never, ever bath-only showers. Cotton panties-no hot tubs-public pools and double rince her clothing. The UTI's are extremely painful-and the more you have the faster they progress and can even spread to her kidney's.

I have never had another UTI-here is hoping they become a thing of the past for Carlie-Rae.

Take Care

Hugs

Diane

Problems with Pediatrician..need your advice please

Hello list mates,My Daughter Carlie Jae has been on the ketogenic diet for about ninemonths. she is four and g-tube fed nothing by mouth.I have had a lot problems since I started the diet. She started cryingin July and I have tried various solutions to treat the problem.Carlie Jae's pediatrician decided that the problem was to due with hercentral nervous system causing her to be irritable and we put her on asedative at night and risperdal during the day. She had also developedreflux possibly because of the high oil content on the diet. Andso she was put on losec (for acid reflux disease).In September Carlie Jae got her very first UTI. A second one followedsometime in October and then maybe the second one had not cleared up andat the end of November another one appeared. While she has these UTI's(Urinary Tract Infections) Carlie Jae cries nonstop and is difficult tocomfort. She screams really loud like something horrible is being doneto her and then she pees. So I being the best Mom that I can be decidedthat i wanted a referral to an urologist. Because really I do not wantCarlie to have another UTI. I came into his office wanting a referralto an urologist. Well he just blew up at me and said if I was going tobring in my own suggestions then i might as well look for another DR.For me I am caught in a very difficult position. Carlie is on theketodiet and Dr M is the only Dr in town that will honour the ketodiet.It is not recognized at the university hospital here where I live. Theketogenic diet has brought Carlie's life threatening seizures undercontrol. I do believe that his manner with me is totally unprofessionaland unwarranted. I just do not want my daughter to suffer so muchShe is often miserable.Right now she weighs about 16.8 kgsis on eight hundrede calories a dayshe gets a little more than 575mls of just water a day this is notincluding her water that is mixed with RFCplus 4 feeds of 184.9 gramsPlease Help meor send me words of soothing adviceRobyn mom of Carlie Jae "The Ketogenic Diet....a realistic treatment option, NOT just a last resort!" List is for parent to parent support only. It is important to get medical advice from a professional keto team! Subscribe: ketogenic-subscribe Unsubscribe: ketogenic-unsubscribe

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My problem was with a rash my son had - we were told it could be a

side effect of the meds he was taking so I took him to get checked

out. Well the doctor was very rude and told me it was definitely not

the meds and what he was on doesnt cause a skin rash - when I talked

to the nurse an hour earlier she read from the book and skin rash was

listed. He wanted to give Mike an oral antihistimine (can

antihistimines even be given when on AED's - epilepsy is written on

my son's chart)- I asked him if it has carbs in it and he said yes

and I told him Mike couldnt take it and briefly explained the diet -

The doc looked at me like I lost my marbles. He just stared at me

for a few minutes and then wrote a prescrip for some cream, thrust it

at me and got up and opened the door for me to leave.

Jenn

> In a message dated 12/9/01 1:22:54 PM Mountain Standard Time,

> heppner1@m... writes:

>

>

> > have had to deal with doctors here that dont believe in the keto

diet -

> > thank goodness they were just in the emergency room. He listened

to me but

> > he was quite rude. I am sorry you are having problems like this

and wish

> > you luck in the future. I would keep insisting - the doctor

might refer

> > your daughter just to have you stop asking :)

>

> Jenn,

> You too? We have had doctors who have been horrible to us, as if we

are

> abusing our daughter, by giving her " pats of butter and gobs of

whipping

> cream with oil " ......I've had to ask them right back, " Which would

you

> consider abuse, letting a child hit her face on the cement 50 times

a day, or

> restricting what she eats? " .....

> I get so fed up with those doctors who know nothing, and say an

awful lot!

> Love,

> Kandy

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Don't they say UTIs are less likely if urine is more alkaline? I know cranberry

juice is good, does that acidize or alkanize urine? Anyway I am thinking

that if making it more alkaline is good, something like polycitra (a system

alkalyzer) should do the trick. Most kids on ketodiet do fine with

polycitra, but it has caused seizures for some. Of course if your

dr has no time or space for your input, I have no help there, except to

whack him up the side of the head!

Diane Wall wrote:

Dear Robyn: I

am so sorry you are having such trouble. I just finished posting

on another list about my history of UTI's. But the advice I was givin

after years of drugs to try to stop them was. Never, ever bath-only

showers. Cotton panties-no hot tubs-public pools and double rince

her clothing. The UTI's are extremely painful-and the more you have

the faster they progress and can even spread to her kidney's. I

have never had another UTI-here is hoping they become a thing of the past

for Carlie-Rae. Take

CareHugsDiane

Problems with

Pediatrician..need your advice please

Hello list mates,

My Daughter Carlie Jae has been on the ketogenic diet for about

nine

months. she is four and g-tube fed nothing by mouth.

I have had a lot problems since I started the diet. She started

crying

in July and I have tried various solutions to treat the problem.

Carlie Jae's pediatrician decided that the problem was to due with

her

central nervous system causing her to be irritable and we put her

on a

sedative at night and risperdal during the day. She had also

developed

reflux possibly because of the high oil content on the diet. And

so she was put on losec (for acid reflux disease).

In September Carlie Jae got her very first UTI. A second

one followed

sometime in October and then maybe the second one had not cleared

up and

at the end of November another one appeared. While she has

these UTI's

(Urinary Tract Infections) Carlie Jae cries nonstop and is difficult

to

comfort. She screams really loud like something horrible

is being done

to her and then she pees. So I being the best Mom that I

can be decided

that i wanted a referral to an urologist. Because really

I do not want

Carlie to have another UTI. I came into his office wanting

a referral

to an urologist. Well he just blew up at me and said if I

was going to

bring in my own suggestions then i might as well look for another

DR.

For me I am caught in a very difficult position. Carlie is

on the

ketodiet and Dr M is the only Dr in town that will honour the ketodiet.

It is not recognized at the university hospital here where

I live. The

ketogenic diet has brought Carlie's life threatening seizures under

control. I do believe that his manner with me is totally

unprofessional

and unwarranted. I just do not want my daughter to suffer

so much

She is often miserable.

Right now she weighs about 16.8 kgs

is on eight hundrede calories a day

she gets a little more than 575mls of just water a day this is

not

including her water that is mixed with RFC

plus 4 feeds of 184.9 grams

Please Help me

or send me words of soothing advice

Robyn mom of Carlie Jae

"The Ketogenic Diet....a realistic treatment option, NOT

just a last resort!"

List is for parent to parent support only.

It is important to get medical advice from a professional keto team!

Subscribe: ketogenic-subscribe

Unsubscribe: ketogenic-unsubscribe

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Share on other sites

Dear Patti,

Carlie Jae's ratio is 4:1 and her calories are 800 hundred a day. She

gets 184.9 grams each serving and four servings a day.

She seems to have no ketones right now. She is at school today so they

can check her ketones.

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Hi Robyn,

Wish I had some answers for you, and I am so sorry that you have to endure such rudeness from your doctor. How obnoxious he must be to think he knows it all, or that you should not have helpful suggestions about treating your child. Its not like there's only been one UTI, there have been too many to ignore, and Carlie Jae needs help. I applaud your proactive attitude and hope that this unreasonable man will listen to you. Pity you can't change doctors to another who supports the diet. Hang in there chum, and I hope things take a turn for the better real soon.

Hannah's UTI's have been treated successfully with antibiotics. I'm surprised she doesn't have more UTI's than she does, given that her BM's are most often liquid and the chances of infection are so much greater. I bath her in water without soap, never bubble baths (due to bad experience with her older sister's UTI's).

(Hannah's mum, Australia)

Problems with Pediatrician..need your advice please

Hello list mates,My Daughter Carlie Jae has been on the ketogenic diet for about ninemonths. she is four and g-tube fed nothing by mouth.I have had a lot problems since I started the diet. She started cryingin July and I have tried various solutions to treat the problem.Carlie Jae's pediatrician decided that the problem was to due with hercentral nervous system causing her to be irritable and we put her on asedative at night and risperdal during the day. She had also developedreflux possibly because of the high oil content on the diet. Andso she was put on losec (for acid reflux disease).In September Carlie Jae got her very first UTI. A second one followedsometime in October and then maybe the second one had not cleared up andat the end of November another one appeared. While she has these UTI's(Urinary Tract Infections) Carlie Jae cries nonstop and is difficult tocomfort. She screams really loud like something horrible is being doneto her and then she pees. So I being the best Mom that I can be decidedthat i wanted a referral to an urologist. Because really I do not wantCarlie to have another UTI. I came into his office wanting a referralto an urologist. Well he just blew up at me and said if I was going tobring in my own suggestions then i might as well look for another DR.For me I am caught in a very difficult position. Carlie is on theketodiet and Dr M is the only Dr in town that will honour the ketodiet.It is not recognized at the university hospital here where I live. Theketogenic diet has brought Carlie's life threatening seizures undercontrol. I do believe that his manner with me is totally unprofessionaland unwarranted. I just do not want my daughter to suffer so muchShe is often miserable.Right now she weighs about 16.8 kgsis on eight hundrede calories a dayshe gets a little more than 575mls of just water a day this is notincluding her water that is mixed with RFCplus 4 feeds of 184.9 gramsPlease Help meor send me words of soothing adviceRobyn mom of Carlie Jae

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  • 2 weeks later...

Dearest ,

Hi my dear Friend! I just wanted to take the time to say it always a

pleasure to hear from you.

Hope your Christmas is delightful.

I will write again soon

Love Robyn Mom of Carlie Jae 4

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