Re: Doc's and the proverbial Right Shoe, Left Shoe

[Guest guest]

ken

as always your insight is wonderful. your unique experiences give you

perspective most of the rest of us don't have. thanks for the whole

horses/zebras/forrest/trees analogy...it is SOOO true.

ruth

aka mitch and lexi's over tired but ever optimistic mom

[Guest guest]

Excellent points ken! Some others have heard me say this but I will say it

again - Tell your doctors that the most helpful thing they can do is

publish. They do not have to know everything about what they are

describing but detail it for the public. Many of our doctors are

prescribing treatments empirically and they work!!!! But unless they take

the time to describe that in writing it is luck whether or not that

treatment becomes available to others. Without communication we will never

go forward. I firmly believe that.

Our hematologist gives the example of Dr. Pearson who first described

Pearson syndrome, (bone marrow failure). He apparently did not have a clue

what it was or why or that it was a type of Mito. Yet he took the time to

write about it and that paved the way understanding.

Right now my kids are starting on IVIG infusions. There are other children

that have used this for years and years for their Mito disease and the

results have been good. But there is not one published thing about it. So

the fact we heard about it was chance. the fact our insurance is paying

for it in the absence of any literature is luck. The fact our doctors are

going along with this is luck too. Not everyone is as lucky as my kids are

to have doctors willing to try something without any supporting literature

especially when it is as expensive as IVIG is. One of our doctors will

publish on this **if** he sees it helps my kids - I guarantee that. This

because he feels strongly that this is BS that no one has taken the time to

look at it in a scientific way. And the same can be said for scores of

treatments out there for Mito.

So my advice is to start asking the doctors to document what they are doing

and communicate it to the rest of the world. They need to make a list of

things they can measure objectively to measure the efficacy of what is

being done and if they can prove that something is efficacious then take

the time to publish it. I realize that it may not be that easy or simple

but it can't be that hard either if some of these doctors start putting

their minds to it.

Anne

[Guest guest]

Anne,

Please email me about ivig... we recently had a doc talk to us about it and

I am not in the know..

thanks

Matty's mom

Re: Doc's and the proverbial Right Shoe, Left Shoe

>

>Excellent points ken! Some others have heard me say this but I will say it

>again - Tell your doctors that the most helpful thing they can do is

>publish. They do not have to know everything about what they are

>describing but detail it for the public. Many of our doctors are

>prescribing treatments empirically and they work!!!! But unless they take

>the time to describe that in writing it is luck whether or not that

>treatment becomes available to others. Without communication we will never

>go forward. I firmly believe that.

>

>Our hematologist gives the example of Dr. Pearson who first described

>Pearson syndrome, (bone marrow failure). He apparently did not have a clue

>what it was or why or that it was a type of Mito. Yet he took the time to

>write about it and that paved the way understanding.

>

>Right now my kids are starting on IVIG infusions. There are other children

>that have used this for years and years for their Mito disease and the

>results have been good. But there is not one published thing about it. So

>the fact we heard about it was chance. the fact our insurance is paying

>for it in the absence of any literature is luck. The fact our doctors are

>going along with this is luck too. Not everyone is as lucky as my kids are

>to have doctors willing to try something without any supporting literature

>especially when it is as expensive as IVIG is. One of our doctors will

>publish on this **if** he sees it helps my kids - I guarantee that. This

>because he feels strongly that this is BS that no one has taken the time to

>look at it in a scientific way. And the same can be said for scores of

>treatments out there for Mito.

>

>So my advice is to start asking the doctors to document what they are doing

>and communicate it to the rest of the world. They need to make a list of

>things they can measure objectively to measure the efficacy of what is

>being done and if they can prove that something is efficacious then take

>the time to publish it. I realize that it may not be that easy or simple

>but it can't be that hard either if some of these doctors start putting

>their minds to it.

>

>Anne

>

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

[Guest guest]

feel free to email me at juhlmann@...

I am just learning about IVIG but will be happy to answer anything that I

can for you. bet I know exactly which doc recommended this to you too. So

far Sam has had 2 infusions and Zach will start with his first on 1/17.

Anyway - let me know what questions you have and I will try to help.

Anne

----------

>

> Anne,

> Please email me about ivig... we recently had a doc talk to us about it

and

> I am not in the know..

> thanks

> Matty's mom

>

[Guest guest]

Ken,

Very well said! I agree with you that much of the time

parents put docs up on pedestals and expect them to have

expertise in areas that are not necessarily medical. I work

with new moms and babies and I can't tell you how many of

them look to their peds to tell them how to parent. Not how

to care for the health of their child, but general parenting

philosophy. They don't seem to understand that much of this

is just opinion. They expect the docs to have the answers

for every issue involving their child. Sorry to go on about

this, it is one of my pet peeves! Let doctors specialize in

the areas they need to and let's not expect them to be

parenting advisors or fortune tellers!

, Mom to Adelaine and Baby ?

--

The s

, , Adelaine and Baby?

Ann Arbor, MI

http://www.mich/com/~jaj

[Guest guest]

<But, until people start studying us, docs will forever think it is rare and

only transmitted through the mother (in reality only about 5% of the time>

This snip has my interest, since I contemplate trying for a second baby. Where

can I find / read more about this?

BTW, eight weeks ago had a fresh muscle bio in Atlanta and I am

waiting....

Amy, Bucks County, PA (mom to (2yrs), possible mito, seizures, global

developmental delay, microcepaly, GI reflux and GI delay in emptying, CVI, ?

Hearing, and the best smile and giggle)

[Guest guest]

When you get the results back from Atlanta, they may be able to tell you

whether the problem (if there is one) is in the mitochondrial DNA or the

nuclear DNA. As I understand it, it is only inherited solely from the mother

if the problem is with the mitochondrial DNA.