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Dr. H's Email??

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Mark,

Dr. H.'s email address is mdharbis@.... In the subject

area, let her know that it is important.

How is ? I am so concerned about her. I understand the ketone

business...we went through it with Max, but it was so many years ago, I

don't remember the tests that they ran. Dr. H. just knew what to do and we

did it.

Please let me know what happens and what Dr. H. says!

Jodi

P.S. I also have her private email, so if you don't hear from her right

away, let me know and I will let her know you are trying to reach her.

Dr. H's Email??

> I know its been given many times but Dr.H Email address would be

greatly

> appreciated!! Thank You!!

>

> To my friends,

> Peace and Prayers

> Mark dad to 5, G-tube

>

>

>

>

>

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Jodi,

is doing OK!! She has had few bouts of hospitalizations. All

revolving around ketones. She is being seen by some Metabolic people who are

very puzzled by her. She has ketones regardless of blood sugar levels. Her

blood sugar did drop to 48 shortly after several vomitting episodes, other

than that she has been normal. Right now it seems her doctors are trying to

make the distiction between a ketone production or a ketone processing

problem. We are very confident in her care right now but just wanted to touch

base with Dr. Harrbison about metabolic issues she has seen in RSS patients.

She will have a skin biopsy today and then hopefully discharged.

I will be online this weekend with many questions for the list.

To my friends,

Peace and Prayers

Mark dad to 5, G-tube

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Mark,

I will be interested to hear what they have to say. Max, too, produces

ketones regardless of blood sugar levels. No one has ever questioned that,

though. Please keep me informed.

In the meantime, I heard from the gastro-enterologist that Max's H Pylori

level is still high - as high as it was in September when he was in the

hospital. In particular, his CO2 levels are high. The doctor is not sure

why. For some strange reason, he is choosing not to treat Max just yet. I

don't know anything else yet because he emailed me and I have not had a

reply.

These kids sure keep us puzzled!

Jodi

Re: Dr. H's Email??

> Jodi,

>

> is doing OK!! She has had few bouts of hospitalizations. All

> revolving around ketones. She is being seen by some Metabolic people who

are

> very puzzled by her. She has ketones regardless of blood sugar levels. Her

> blood sugar did drop to 48 shortly after several vomitting episodes, other

> than that she has been normal. Right now it seems her doctors are trying

to

> make the distiction between a ketone production or a ketone processing

> problem. We are very confident in her care right now but just wanted to

touch

> base with Dr. Harrbison about metabolic issues she has seen in RSS

patients.

>

> She will have a skin biopsy today and then hopefully discharged.

>

> I will be online this weekend with many questions for the list.

>

> To my friends,

> Peace and Prayers

> Mark dad to 5, G-tube

>

>

>

>

>

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Share on other sites

,

Elyse's symptoms sound just like Max's! And this H Pylori thing is making

us all crazy!!! I don't think it has anything to do with RSS, though. The

difficulty with Max has been in getting it to go away. Yes, it is the same

thing that causes ulcers, however, we don't think Max has one just yet. But

he does produce an abnormally large amount of CO2, something that I am not

too educated about just yet. I just know that his H Pylori levels are just

as high as they were months ago and he is still symptomatic. I am waiting

to hear from the doctor, hopefully tonight, and I will pass along anything I

do learn.

There were three tests that Max had to diagnose this condition. One was a

blood test, but he does not produce antibodies to this bacteria, so it does

not show up in bloodwork. It is the same for strep with him. No one knows

why. The next thing the doctor did was an endoscopy. It was relatively

easy for Max to go through, but he did have a sore throat for a few days

after. The last thing they did was a breath test. Max had to eat some high

fat food and then breathe into a plastic bag a few times. They then study

the breath that is collected.

As for your question about other gastro problems that RSS kids may have, I

don't know of anything other than reflux. It is amazing how many have it

now. When Max was an infant, no one thought that reflux was common among

RSS kids, but it does not seem that way now. I'm not sure if it really is a

characteristic or if doctors are getting better at diagnosing it all around

now.

Let me know what happens with the doctor tomorrow. I will let you know if I

hear from Dr. Levy tonight.

Jodi

Re: Dr. H's Email??

>

>

> > Jodi,

> >

> > is doing OK!! She has had few bouts of hospitalizations. All

> > revolving around ketones. She is being seen by some Metabolic people who

> are

> > very puzzled by her. She has ketones regardless of blood sugar levels.

Her

> > blood sugar did drop to 48 shortly after several vomitting episodes,

other

> > than that she has been normal. Right now it seems her doctors are trying

> to

> > make the distiction between a ketone production or a ketone processing

> > problem. We are very confident in her care right now but just wanted to

> touch

> > base with Dr. Harrbison about metabolic issues she has seen in RSS

> patients.

> >

> > She will have a skin biopsy today and then hopefully discharged.

> >

> > I will be online this weekend with many questions for the list.

> >

> > To my friends,

> > Peace and Prayers

> > Mark dad to 5, G-tube

> >

> >

> >

> >

> >

>

>

>

>

>

>

>

>

>

>

>

>

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