Re: MDA clinic and doctors Need som advice

[Guest guest]

,

>Anyway, do I have to leave Rick and Bruce to

>go

>to the MDA doc? Does anyone know? Or can I use the MDA doc more like the

>pediatrician? I love our Pediatrician and really don't want to leave her

>either, but we are talking about 1000,00's of dollars of services we would

>be

>getting help with if we were MDA.

Where we live, at least, the MDA clinic doctor is just an additional

resource. We did not need to leave our specialists or even pediatrician.

Honestly, because there are no specialists at our local MDA clinic, we

only take Emilie so she will be eligible for any services they cover; we

were told the MDA doctor has to write the order for anything MDA is going

to pay for, hence the need to go to clinic. Even the doctor at our

clinic, who is a semi-retired family practioner, says we should keep

taking Emilie to her mito doctor because the mito doc knows more about

mito than he does.

BTW, what services (besides camp) did they say you could receive? I'm

just wondering if there are some things I'm not aware of that would

benefit Emilie.

-- Mom to:

Emilie (17), mito--complex IV, cp, ld

Kaitlin (17), cp, asthma, a few autonomic symptoms

Ian (22) migraines

....and wife to Tim, who has a heart of gold

[Guest guest]

It is too my belief that you do not have to change any of your doctors. You just have to add a MDA doctor to the list. I guess if, for example, Dr. Cohen wants to start a new med or try a different test the MDA doctor will have to approve it and then actually prescribe it. It is alot more work, but if it saves you that much money it may be worth it. I don't know where you live, but they have doctors everywhere, and usually at major hospitals. It may even benefit having that extra person close for a just in case situation. MDA doctors specialize in these types of disorders so they should be knowledgeable and able to help when you need them. We have thought about it for Grace, but right now we have the medical handicap wavier which pays what our insurance will not. I firmly believe if we ever loose it, we will be going to MDA also.

[Guest guest]

It is too my belief that you do not have to change any of your doctors. You just have to add a MDA doctor to the list. I guess if, for example, Dr. Cohen wants to start a new med or try a different test the MDA doctor will have to approve it and then actually prescribe it. It is alot more work, but if it saves you that much money it may be worth it. I don't know where you live, but they have doctors everywhere, and usually at major hospitals. It may even benefit having that extra person close for a just in case situation. MDA doctors specialize in these types of disorders so they should be knowledgeable and able to help when you need them. We have thought about it for Grace, but right now we have the medical handicap wavier which pays what our insurance will not. I firmly believe if we ever loose it, we will be going to MDA also.

[Guest guest]

It is too my belief that you do not have to change any of your doctors. You just have to add a MDA doctor to the list. I guess if, for example, Dr. Cohen wants to start a new med or try a different test the MDA doctor will have to approve it and then actually prescribe it. It is alot more work, but if it saves you that much money it may be worth it. I don't know where you live, but they have doctors everywhere, and usually at major hospitals. It may even benefit having that extra person close for a just in case situation. MDA doctors specialize in these types of disorders so they should be knowledgeable and able to help when you need them. We have thought about it for Grace, but right now we have the medical handicap wavier which pays what our insurance will not. I firmly believe if we ever loose it, we will be going to MDA also.

[Guest guest]

,

You do not have to leave your Mito doctors to be seen at the MDA Clinic and send your children to MDA camp. Walk, don't run and get your kids into this camp program. It's terrific

Our next MDA chat will feature the following and I'm hoping a lot of Mito parents come to chat so please pass the word around.

nne Associate Director of Health Care ServicesMDA Summer Camp ProgramApr. 19, Mon., 9-10 PM Eastern

Alice

[Guest guest]

,

You do not have to leave your Mito doctors to be seen at the MDA Clinic and send your children to MDA camp. Walk, don't run and get your kids into this camp program. It's terrific

Our next MDA chat will feature the following and I'm hoping a lot of Mito parents come to chat so please pass the word around.

nne Associate Director of Health Care ServicesMDA Summer Camp ProgramApr. 19, Mon., 9-10 PM Eastern

Alice

[Guest guest]

,

You do not have to leave your Mito doctors to be seen at the MDA Clinic and send your children to MDA camp. Walk, don't run and get your kids into this camp program. It's terrific

Our next MDA chat will feature the following and I'm hoping a lot of Mito parents come to chat so please pass the word around.

nne Associate Director of Health Care ServicesMDA Summer Camp ProgramApr. 19, Mon., 9-10 PM Eastern

Alice

[Guest guest]

>I guess if, for example, Dr.

>Cohen

>wants to start a new med or try a different test the MDA doctor will have to

>approve it and then actually prescribe it. It is alot more work, but if it

>saves you that much money it may be worth it.

I could be missing something, but I don't think there's any reason to

have an MDA doctor rewrite prescriptions since MDA won't pay for meds.

Testing for mito may be a different matter, since MDA will pay for that,

at least under some circumstances. I don't think our MDA doctor actually

wrote an order for the testing Emilie needed but simply put in Emilie's

chart that he was recommending it (after I told him Em's mito doc wanted

it done).

-- Mom to:

Emilie (17), mito--complex IV, cp, ld

Kaitlin (17), cp, asthma, a few autonomic symptoms

Ian (22) migraines

....and wife to Tim, who has a heart of gold

[Guest guest]

Hi ;

I think I would be checking with the offices of Drs Boles and Cohen to see

if either of them are recognized by MDA. If not ..... I would phone the

branch of the MDA which you would be dealing with for the camp and ask that

they recognize either of these doctors since MDA has Mito under their umbrella

of services and Mito medicine is pretty specific!

Jean

mitooggo@... wrote:

Hi guys,

I need some advice. I have been checking into the summer camp stuff

for the kids as I am finally willing to let them try this adventure, maybe.

Anyway, I got a call from Camp Cuyamaca here in Ca who are an MDA camp.

They said the kids diagnoses qualifies them to go to camp for free. I almost

fell over as every other camp I have checked into that they fit, has been

1000.00 or more for the week. Which is way out of what we can do times 3.

Here is my question. They said that I needed to register the kids with MDA,

and then they needed to see an MDA doctor. We have always just seen Rick

Boles and Bruce Cohen because of their MIDS diagnoses and the kids being

part of the research Rick is doing. I was amazed at the services that would

become available to us if we go the MDA route as well. Anyway, do I have

to leave Rick and Bruce to go to the MDA doc? Does anyone know? Or can

I use the MD

Thanks

O

Please contact mito-owner with any problems or questions.

[Guest guest]

Hi ;

I think I would be checking with the offices of Drs Boles and Cohen to see

if either of them are recognized by MDA. If not ..... I would phone the

branch of the MDA which you would be dealing with for the camp and ask that

they recognize either of these doctors since MDA has Mito under their umbrella

of services and Mito medicine is pretty specific!

Jean

mitooggo@... wrote:

Hi guys,

I need some advice. I have been checking into the summer camp stuff

for the kids as I am finally willing to let them try this adventure, maybe.

Anyway, I got a call from Camp Cuyamaca here in Ca who are an MDA camp.

They said the kids diagnoses qualifies them to go to camp for free. I almost

fell over as every other camp I have checked into that they fit, has been

1000.00 or more for the week. Which is way out of what we can do times 3.

Here is my question. They said that I needed to register the kids with MDA,

and then they needed to see an MDA doctor. We have always just seen Rick

Boles and Bruce Cohen because of their MIDS diagnoses and the kids being

part of the research Rick is doing. I was amazed at the services that would

become available to us if we go the MDA route as well. Anyway, do I have

to leave Rick and Bruce to go to the MDA doc? Does anyone know? Or can

I use the MD

Thanks

O

Please contact mito-owner with any problems or questions.

[Guest guest]

Hi ;

I think I would be checking with the offices of Drs Boles and Cohen to see

if either of them are recognized by MDA. If not ..... I would phone the

branch of the MDA which you would be dealing with for the camp and ask that

they recognize either of these doctors since MDA has Mito under their umbrella

of services and Mito medicine is pretty specific!

Jean

mitooggo@... wrote:

Hi guys,

I need some advice. I have been checking into the summer camp stuff

for the kids as I am finally willing to let them try this adventure, maybe.

Anyway, I got a call from Camp Cuyamaca here in Ca who are an MDA camp.

They said the kids diagnoses qualifies them to go to camp for free. I almost

fell over as every other camp I have checked into that they fit, has been

1000.00 or more for the week. Which is way out of what we can do times 3.

Here is my question. They said that I needed to register the kids with MDA,

and then they needed to see an MDA doctor. We have always just seen Rick

Boles and Bruce Cohen because of their MIDS diagnoses and the kids being

part of the research Rick is doing. I was amazed at the services that would

become available to us if we go the MDA route as well. Anyway, do I have

to leave Rick and Bruce to go to the MDA doc? Does anyone know? Or can

I use the MD

Thanks

O

Please contact mito-owner with any problems or questions.

[Guest guest]

Jean,

This does not matter. 's children can go to camp if they have

been seen by the MDA Clinic in their area. They can go to the MDA

doctor for bi-annual checkups and this does not affect their

relationship with Dr's Boles and Cohen. The MDA requires a rigid

medical informational form for their files and although it's not

normal, there may be camps that don't have the medical teams needed

to take care of some of the more involved MD patients. The local

camp director will be the one who can advise on this but they

normally have medical personnel on site who deal with all the needs

of a child with any form of MD. They aren't going to take a child

they don't feel they are equipt to handle.

Mattie attends camp yearly. He has some very severe Mito

difficulties but this doesn't hold him back. If any child can be

accepted by their local MDA camp.. they should go. I have heard

that alternate camps are being made for children with higher medical

needs but I'm not familiar with them enough to give any

information. This is one of the reasons I have invited the National

Medical Director of MDA Camp to be our guest in the chat next month

so that questions like these can be answered.

If anyone cannot attend the chat - please forward questions to me

and I will do my best to get them answered by forwarding them to the

responsible parties at the MDA.

Alice

>

> > Hi guys,

> > I need some advice. I have been checking into the summer

camp

> > stuff for the kids as I am finally willing to let them try this

> > adventure, maybe. Anyway, I got a call from Camp Cuyamaca here

in Ca

> > who are an MDA camp. They said the kids diagnoses qualifies

them to

> > go to camp for free. I almost fell over as every other camp I

have

> > checked into that they fit, has been 1000.00 or more for the

week.

> > Which is way out of what we can do times 3. Here is my

question.

> > They said that I needed to register the kids with MDA, and then

they

> > needed to see an MDA doctor. We have always just seen Rick

Boles and

> > Bruce Cohen because of their MIDS diagnoses and the kids being

part of

> > the research Rick is doing. I was amazed at the services that

would

> > become available to us if we go the MDA route as well. Anyway,

do I

> > have to leave Rick and Bruce to go to the MDA doc? Does anyone

know?

> > Or can I use the MD

> > Thanks

> > O

> >

> > Please contact mito-owner with any problems or

questions.

> >

> >

> > -----------------------------------------------------------------

-------

> >

[Guest guest]

,

There are additional services which include items from their lending

closet and repairs and funds toward wheelchair repairs and

purchases. Some areas have local support groups and activities also.

Here - there is a Holiday party every year and of course everyone is

treated like royalty the day of the telethon.

Alice

> BTW, what services (besides camp) did they say you could receive?

I'm

> just wondering if there are some things I'm not aware of that

would

> benefit Emilie.

>

>

> --

>

[Guest guest]

,

There are additional services which include items from their lending

closet and repairs and funds toward wheelchair repairs and

purchases. Some areas have local support groups and activities also.

Here - there is a Holiday party every year and of course everyone is

treated like royalty the day of the telethon.

Alice

> BTW, what services (besides camp) did they say you could receive?

I'm

> just wondering if there are some things I'm not aware of that

would

> benefit Emilie.

>

>

> --

>

[Guest guest]

,

There are additional services which include items from their lending

closet and repairs and funds toward wheelchair repairs and

purchases. Some areas have local support groups and activities also.

Here - there is a Holiday party every year and of course everyone is

treated like royalty the day of the telethon.

Alice

> BTW, what services (besides camp) did they say you could receive?

I'm

> just wondering if there are some things I'm not aware of that

would

> benefit Emilie.

>

>

> --

>

[Guest guest]

For new equipment - The MDA pays $2000 toward whatever your

insurance won't pay yearly. They also have lending closets which

have many items for your use and they do not limit the time of use.

I know people who have wheelchairs and power chairs from these

lending closets at absolutely no cost.

Repairs on equipment is offered each client at the amount of $500

per year. This goes for children and adults alike.

Alice

> ,

>

> For us they said there is the services that Alice mentioned

plus there

> are monthly activities for the kids, a kids club kind of thing,

they take them

> to the movies and theme parks museums ect. For us right now we

need the help

> getting their scooters paid for as our stupid insurance has deemed

them not

> medically necessary, if you can believe that! 6,000.00 is a whole

lot more than

> we have laying around right now. LOL Both Kira and need

one for

> school, but Kira the most right now. We do not get any

governmental services

> financial help at all because I am a teacher and rolling in the

money! LOL Yea

> right! So as you can see this new information for us is a

Blessing! We finally

> qualify for something! Yippee!!!!!! Thanks for all your

information

> everyone! I am so excited! I am praying this doesn't go bellie

up for us like so

> many other things have.

>

>

> big hugs to you,

>

> O

>

> When the door of happiness closes, another opens, but often times

we spend so

> much time looking at the closed door, we don't see the open door.

Look for

> the open doors!

[Guest guest]

,

You are absolutely right. The MDA docs can write scripts but your

regular doctors are usually the ones who take care of this.

No one from the MDA needs to write anything for camp though. That's

taken care of long before the kids go. As I said, there is a very

complete medical form to complete which your own medical doctor

signs.

Alice

> >I guess if, for example, Dr.

> >Cohen

> >wants to start a new med or try a different test the MDA doctor

will have to

> >approve it and then actually prescribe it. It is alot more work,

but if it

> >saves you that much money it may be worth it.

>

> I could be missing something, but I don't think there's any reason

to

> have an MDA doctor rewrite prescriptions since MDA won't pay for

meds.

>

> Testing for mito may be a different matter, since MDA will pay for

that,

> at least under some circumstances. I don't think our MDA doctor

actually

> wrote an order for the testing Emilie needed but simply put in

Emilie's

> chart that he was recommending it (after I told him Em's mito doc

wanted

> it done).

>

>

>

> -- Mom to:

> Emilie (17), mito--complex IV, cp, ld

> Kaitlin (17), cp, asthma, a few autonomic symptoms

> Ian (22) migraines

> ...and wife to Tim, who has a heart of gold