Question about drs/ Holland trip

[Guest guest]

HI all,

I'm just starting to think a bit more about what we're going to do AFTER the diagnosis comes in from Shoffner (hopefully, there will be a dx or at least a "non-specific" one that will point us in one direction or another!). I expect to hear from him, now that I clarified it with his office, sometime in middle of May. Anyhow, IF we get a mito or metabolic dx, what did you do in terms of doctors who treat? I know that a number of you see Cohen or Whiteman and that they specialize in mito. How many of you see them? How many of your local doctors work with them to help your mito/metabolic disorder child? How many of you just work with your local doctors? Will Cohen or Whiteman consult with local docs even if Cohen/Whiteman do not see the child. I have lots of anxiety about the diagnosis, but I also have anxiety about what we do AFTER we, hopefully (isn't it weird to pray for a diagnosis? I guess this state of limbo and confusion just drives us all nuts) get a diagnosis. I'm hoping Asher's neurologist will know what to do next....... I mean, Asher's not currently in any state of crisis given that he now is tube feeding.... And I hear that Whiteman and Cohen are so so so busy that it takes a long time to get in.

Have you ever heard the Holland story about what it's like raising a child with Down's? How it's quieter, not as flashy, but a journey worth itself anyhow. Sometimes, I feel like raising a Mito/Metabolic kid is like taking a trip to Israel. You know a bomb is going to go off somewhere at some time but you don't know when or where, you just have to be at a heightened state of vigilance all the time. Pessimistic, maybe... , but, then again, my one actual trip to Israel almost 10 years ago was the most interesting, satisfying, and eye-opening experience I've ever had.

Let me know about what you do regarding doctors.

Anne R

[Guest guest]

Grace is a patient of Dr. Cohen. While we only live 20 minuets from the Cleveland Clinic, he is in constant communication with our pediatrician. Although, she is also a CCF doctor, he has met with her for lunch to help her treat her mito kids better. Due to Cohens hectic schedule, if we have a problem that needs to be addressed sooner than our next appointment, we can either call his nurse (who is great) or go to our pediatrician. For example, Grace just saw Cohen about two months ago, and was doing great at the time. Since her appointment we have noticed a drop in her gross motor skills. I took her to my pediatrician, she knew what labs to do at that time, then emaild Cohen. By 8:30 the next day she called me back after talking to Cohen and had an MRI scheduled in about 4 days (including the weekend). Best wishes,

[Guest guest]

Hi Anne:

We work closely with our regular ped. He stays on top of things

and if he would have any questions would not hesitate to call our metabolic

doctor. In fact, our ped was the one who felt something wasn't quite

right and because the only ped. neurologist was out of town he came in

(on his day off, too) on a Saturday and placed a call down to Madison to

a specialist down there to ask questions and get us set up to call for

an appointment when we were to have gone down for Leah's cleft palate surgery.

Leah doesn't have a lot of medical issues. So we only see her ped

now when necessary, her ped.neurologist every six months and her metabolic

doctor once a year. But they all work together as a team. Leah

is going to have eye surgery in June, so we are getting a letter from her

metabolic doctor to take in to the eye doctor so he knows what precautions

to take for Leah. Our ped. has in Leah's file what to do if Leah

needs to be admitted to the hospital and other doctors handles her case.

Even what blood work needs to be done. My one big worry is when my

husband gets a new job and it may be an HMO, I'm worried that we will need

to change doctors and how that new doctor will handle things because our

ped has been soooooo wonderful and supportive for us. We take it

day by day and try not to worry about what doctors to see; for now.

Nerenhausen

mom to Leah

AReckling@... wrote:

HI all,

I'm just starting to think a bit more

about what we're going to do AFTER the diagnosis comes in from Shoffner

(hopefully, there will be a dx or at least a "non-specific" one that will

point us in one direction or another!). I expect to hear from him, now

that I clarified it with his office, sometime in middle of May. Anyhow,

IF we get a mito or metabolic dx, what did you do in terms of doctors who

treat? I know that a number of you see Cohen or Whiteman and that they

specialize in mito. How many of you see them? How many of your local doctors

work with them to help your mito/metabolic disorder child? How many of

you just work with your local doctors? Will Cohen or Whiteman consult with

local docs even if Cohen/Whiteman do not see the child. I have lots of

anxiety about the diagnosis, but I also have anxiety about what we do AFTER

we, hopefully (isn't it weird to pray for a diagnosis? I guess this state

of limbo and confusion just drives us all nuts) get a diagnosis. I'm hopi!

ng Asher's neurologist will know what to do next....... I mean, Asher's

not currently in any state of crisis given that he now is tube feeding....

And I hear that Whiteman and Cohen are so so so busy that it takes a long

time to get in.

Have you ever heard the Holland story

about what it's like raising a child with Down's? How it's quieter, not

as flashy, but a journey worth itself anyhow. Sometimes, I feel like raising

a Mito/Metabolic kid is like taking a trip to Israel. You know a bomb is

going to go off somewhere at some time but you don't know when or where,

you just have to be at a heightened state of vigilance all the time. Pessimistic,

maybe... , but, then again, my one actual trip to Israel almost 10 years

ago was the most interesting, satisfying, and eye-opening experience I've

ever had.

Let me know about what you do regarding

doctors.

Anne R

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with any problems or questions.

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