Re: Carnitine being increased-vent

[Guest guest]

Hey - you are not rambling. Dealing with healthy kids is hard enough sometimes, but when there are issues and you have to start dealing with rules and regulations you could pull you hair out. My son has a g tube and the insurance company wont pay for the formula or the syringes to flush the tube. Do they think we had the tube put in because we were looking for something to do one day? Hang in there. Jill, mother of Matt, 2 1/2 scad,Zach 11 and Sara 7 1/2 unaffected

[Guest guest]

.

I am sorry that things are so stressful.

Do you have hyperammonemia? Here is a good article on OTC.

Ornithine Transcarbamylase Deficiency

http://www.emedicine.com/ped/topic2744.htm

[Guest guest]

.

I am sorry that things are so stressful.

Do you have hyperammonemia? Here is a good article on OTC.

Ornithine Transcarbamylase Deficiency

http://www.emedicine.com/ped/topic2744.htm

[Guest guest]

Hi :

Doesn't it feel good to let it all out? Yes, proctocol can be

a pain in the butt. What would have been nice is if Cleveland would

say either ahead of time that this is what you would need and fax it to

your pharmacy so they could get it in time for you....or.....provide you

with a few days supply to get you by until your other order comes in.

I can understand your frustration and I'm sure Fran doesn't understand

every thing going on when you think of how many patients Dr. Cohen has.

But may be Dr. Cohen wanted to have Fran call because he couldn't.

But it sounds like your case study is over her head; which was good of

Fran to admit instead of flubbing her way through. Remember when

I told you, you would be teaching them stuff because of your situation?

Well this is one example no matter how frustrating it was to you.

Yes, she should have looked things up in your chart ahead of time.

Where it was who knows. May be the next time this happens instead

of staying on the phone and feel like you are getting the run around; lay

your questions out and ask to be gotten back WHEN they have the answers.

And you could ask when you would be expecting their call. I like

how your mom asked that she has errands to do and would hate to miss their

important call. It will all work out. Glad to hear your incisions

are healing nicely and the soreness is getting better. We are here

to listen and some times we are on the other end and can help each other

work through a situation. I hope Fran learned some thing from this

and didn't roll her eyes as she was talking to you both. This is

important to you and you don't want to waste any one times over the phone.

We've all been there with this situation and not just with medical but

other things in life. It's just some times we don't have any one

to vent to and you know what? Some times just being able to vent

helps the situation and you see things in a whole different light.

Right now it is a red light; but may be it will be come a blue (relaxing

color) light. Good luck and keep us posted on what Fran learned about

what the tests are, etc.

Thinking of you.

Nerenhausen

mom to Leah

LILQT4U1984@... wrote:

Well

this has been a frustrating week. Like I said before in my post Dr. Cohen

asked us to call him this week. Each day my mom and I have called and then

sat and waited by the phone for him to call us back. This morning my mom

called again and asked for a more specific time as she has been afraid

to even go to the grocery that she would miss his call. Jane who is our

friend in Cohen's office said it would be after 11:30. Well at about 11:30

Fran his nurse calls. She says that Cohen isn't calling. She then proceeds

to ask if I've ever had a skin biopsy and where it was done. Hello! It

done there in March and Cohen gave us the results when we were there last

week. Then she asks what my carnitine dose is and how I recieve it. They

are who prescribes the carnitine and I follow their instructions to the

tee. Why didn't she look all that up in my chart??? Ok if that wasn't enough

she says that there was a meeting this morning with Cohen and the CIDEM

docs and that they discussed me going back on oral carnitine. I about hit

the fan! I JUST got this broviac implanted in me last week for the IV carnitine.

My mom asked Fran what came of the conference call about me on Mon night

and she knew nothing about a conference call. She didn't know anything

about my lab results, and said all the tests they were discussing running

on my skin biopsy were over her head. I'm sorry if this is mean...but why

did she even call? All it did was upset us and we still don't know anything.

My mom called Jane then and told her and she said she would check on things

and call back in 30 mins. Well Fran called back again instead and said

that before they switched me back to oral that they were going to increase

my IV carnitine to 2 grams 2x daily instead of 1 gram 3x daily. I think

that will actually be better as the 2 doses will be 12 hours apart and

I won't have to be up at 4:30 each morning to get 3 doses in. All I really

know about the testing being done now is a OCT2 gene test (I be lieve it's

the carnitine transporter gene) and then some blood test that Fran didn't

know what it was or how it was to be done or where the lab was that would

be running the test. I still don't have a supplier to get my dressing items

or IV lines. My local pharm is working on that now. Cleveland won't provide

me with the needleless caps and lines. That isn't their protocol. I'm so

sick of people's protocols..thats how I"m in this mess with no supplies

in the first place. Sorry for the rambling...I actually feel better now.

My incisions are healing nicely and the soreness is getting better. Thanks

for listening.

Please contact mito-owner with any problems or

questions.

[Guest guest]

,

Do you have a visiting nurse service? Can't they get your supplies

anywhere? How about calling the insurance co and asking who is in

network and having your primary doc order the supplies. Beleive it or

not this will soon be something you can do blind folded it just takes

a while to get started. I am so frustrated for you about this Cohen

stuff. My theory is this...If you can't take care of the patients you

have, then you have too many patients. I know that he must feel this

need to help everyone, but if he is stretched too far, who is he

really helping? I have had some of those conversations with Fran, how

annoying. I hope you get some answers soon.I am very glad you are

feeling better.

Dawn

[Guest guest]

Dear ,

How frustrating for you and your mom. I know how hard it is to sit by the

phone waiting for the call that never comes. I am glad that Fran did at

least call, but it must have been disappointing and frustrating to not have

it be Dr. Cohen himself. I am sure it was like someone else said that he was

swamped and wanted to at least make sure someone got back to you.

I like the idea of asking your chart be available when you call. I know I

was told once that right after the visit it goes back down to storage

somewhere off the floor. It seems it should be accessible by computer, but

maybe everything isn't logged in there. I also like the idea of having a

time. One time I missed his call because they said it would be after 5:30

and he called at 3:00. I was so mad. It sounded to me at that time that Fran

is sort of his nurse now. Maybe she always has been but she seems to be

taking more of a role in handling these calls first.

If you and your mom still want to talk to Dr. Cohen I would keep at it. I am

sure that he does not have answers to what he wants answers to and is

waiting to call till he does. But sometimes it gives you peace of mind to

just hear him say that, and to offer what answers he can. I always feel

better after talking to him, so I would encourage you to call if you want to

talk to him. He is swamped, this is true, but he is also interested. So many

would just say there is nothing they can do. I am sure that he is struggling

with what to do next. If they wish to go back on the carnitine to oral, I

would certainly want to hear from him, why...Maybe you could write out your

questions and mail or email them to him and say you want a call to address

these few issues.

I hope the venting helped. Keep us posted on what you learn.

Hugs,

Z

(13)

[Guest guest]

---

Hey ! Ramble all you want. You speak for all of us who

are frustrated with the confusing medical people and their

confusion!

Good Luck!

, mother to Eliza(2)

In Mito , LILQT4U1984@a... wrote:

> Well this has been a frustrating week. Like I said before in my

post Dr.

> Cohen asked us to call him this week. Each day my mom and I have

called and then

> sat and waited by the phone for him to call us back. This morning

my mom called

> again and asked for a more specific time as she has been afraid to

even go to

> the grocery that she would miss his call. Jane who is our friend in

Cohen's

> office said it would be after 11:30. Well at about 11:30 Fran his

nurse calls.

> She says that Cohen isn't calling. She then proceeds to ask if I've

ever had a

> skin biopsy and where it was done. Hello! It done there in March

and Cohen

> gave us the results when we were there last week. Then she asks

what my

> carnitine dose is and how I recieve it. They are who prescribes the

carnitine and I

> follow their instructions to the tee. Why didn't she look all that

up in my

> chart??? Ok if that wasn't enough she says that there was a meeting

this morning

> with Cohen and the CIDEM docs and that they discussed me going back

on oral

> carnitine. I about hit the fan! I JUST got this broviac implanted

in me last week

> for the IV carnitine. My mom asked Fran what came of the conference

call

> about me on Mon night and she knew nothing about a conference call.

She didn't

> know anything about my lab results, and said all the tests they

were discussing

> running on my skin biopsy were over her head. I'm sorry if this is

mean...but

> why did she even call? All it did was upset us and we still don't

know

> anything. My mom called Jane then and told her and she said she

would check on things

> and call back in 30 mins. Well Fran called back again instead and

said that

> before they switched me back to oral that they were going to

increase my IV

> carnitine to 2 grams 2x daily instead of 1 gram 3x daily. I think

that will

> actually be better as the 2 doses will be 12 hours apart and I

won't have to be up

> at 4:30 each morning to get 3 doses in. All I really know about the

testing

> being done now is a OCT2 gene test (I believe it's the carnitine

transporter

> gene) and then some blood test that Fran didn't know what it was or

how it was to

> be done or where the lab was that would be running the test. I

still don't

> have a supplier to get my dressing items or IV lines. My local

pharm is working

> on that now. Cleveland won't provide me with the needleless caps

and lines.

> That isn't their protocol. I'm so sick of people's protocols..thats

how I " m in

> this mess with no supplies in the first place. Sorry for the

rambling...I

> actually feel better now. My incisions are healing nicely and the

soreness is

> getting better. Thanks for listening.

[Guest guest]

and ,

I can feel your frustration in the words you write. Last January my daughter and SIL took Audrey to see Dr. Cohen and about all he told them was he had never seen the mitochondria do what Audrey's were doing, they were crystallizing and dying. He said they could try the cocktail but otherwise just take her home and enjoy her as long as they could. He didn't even want to see her again!!!!They tried the cocktal and it just made her seizures so much worse they had to stop it. I hope you find your answers, but I just feel so lost at the moment.

Kathy, grandma to Audrey, 2 years