Re: venting....trust me..VERY LONG

[Guest guest]

I know where you are coming from concerning dealing with skeptical

doctors. I dealt with them for many years concerning my own health.

Anything from postpartum depression (a year and a half after giving

birth-LOL), stress, just lost too much weight too quickly, to Multiple

Sclerosis. They NEVER mentioned Mito, not once! I was tested for

everything else in the sun though! Then when Asenath began having issues,

all the docs said, just wait to see if she continues having strokes and

migraines, you don't need to do anything just yet... It wasn't until we did

seek further that we heard about Mito. We still deal with some skepticism

from some of the docs we see as they still want to look into other

conditions that can only answer why some of the medical problems are

occurring. It is very annoying when you ask them how to explain the other

issues and then watch them squirm and say they can't explain them and then

STILL persist to want to test for the thing they are looking at.

Thankfully, most of our docs believe Mito is the cause, the girls are on the

cocktail, and most all their medical needs are being addressed, so we live

with the suspected/assumed Mito diagnosis. I too wish we could have the

100% confirmed type of Mito, but it just doesn't seem feasible at this

point. Maybe some day we will do a fresh biopsy, but not any time soon...

Hope you are feeling better after being able to share with us your

frustration. It always seems to help to " get it out. " Take care... " _

See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org to see

a photo look into what Mito looks like

Darla: mommy to

Asenath (5) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomia, SID, global delays, asthma, cyclic vomiting,

bladder issues, wheelchair for distances, eye issues, autistic behaviors,

gastric emptying issues...

Zipporrah (17 months) Mito, strokes, neuro-motor planning dys., SID, GERD,

dysphasia, 100% G-tube fed, speech delays, extreme fatigue, excessive

phlegm, asthma, trach issues, aberrant subclavian artery, disautonomia,

hypertonicity, migraines, possible seizures, dumping syndrome, iron

deficiency...

[Guest guest]

Donna,

When I read your post, my heart just ached for you. I know exactly

how you feel. My daughter went until just this Jan. without a

diagnosis. She is on her 7th feeding tube and has a mediport for

tpn. We have gone threw the ringer trying to get someone to give us

answers. Last July Kierra had a muscle and skin biopsy. We now

know that she has mito and a metobolic disorder (SCADD). Life is

just as hard now as it was before we had that name on a paper of

what is wrong with Kierra. Having mito is like a roller coaster

ride. Last night we were up all night. Kierra was just so sick and

this afternoon when she got up she seemed fine. I don't know if I

am coming or going half of the time. My son is almost 14 and he is

only a carrier. I have come to a point in my life that I live min.

by min. Deal with Kierra's health issues as they come. Hooking up

to machines, mito cocktails, watching oral intake, looking everytime

she goes to the bathroom, flushing lines, tubes, nurses in the

house, tutors, theraphiest, it just so overwhelming. Remember, you

are never alone in this. Nothing about mito is simple. And to be

honest, half of the time I don't think the doctors know what to do

with our kids. God Bless you and your family. Email me any time.

kaempf10670@...

> I am at my wits end. Not sure what to feel or think or even say or

ask.

> For 15 years we have dealt with medical problems with no answers

as to why we have these strange medical issues...we have been told I

have maunchousins disorder, which offended me greatly. And we have

been told its a fluke in the systems....

> We went through genetic counseling after we were trying for

another child, only to be told " the child u have so many issues

with tried to miscarry itself and u fought to keep it viable,

sometimes the body knows best " ...in other words it is my fault.

> After our last child was born it was obvious there were immediate

issues..and after a few months it snowballed until one metabolic Dr

got involved and diagnosed possible mito. from that point it was

easy to look at all the kids and realize this was the case with them

all....and me! Once we began clinical visits and testing it was

obvious. EXCEPT no positive tests to show what type. blood work

looks questionable but never definite....way too many organs

involved, and too many medical issue to not be the answer, we get

told....now we come to this past month....

> one child goes into the hospital for G tube placement...never a

problem until past year! now all of a sudden seizures appear and

heat rates go crazy, blood pressure soars...etc. Mito Dr (Dr Korson)

is sure of the diagnosis now!! BUT..we still have no " proof " or

specific name....the treatment from other drs and staff is like we

are crazy. They say " well this is ok, so what if he has diarrhea, he

doesn't need to drink that much, its only a seizure post surgery

probably...... " ok...I get it can be normal for some kids....or even

not a real problem...but my child is different. I keep getting told

about cancer kids and their needs, but my kids get left to fall

through the cracks....social service people at the hospital tell us

to be vocal, when we do it is considered rude on our behalf....if we

don't, something goes wrong, we get asked why we didn't speak up. I

am starting to hate drs! Suddenly we went from medical problems

requiring medicine, to medical problems requiring the use of 3

wheelchairs, tubes, tubing, syringes, hospital beds, pumps and

cpaps.....yet there is no answer as to WHY we need this stuff

except " working diagnosis of Mito " and " we really believe fully

this is the case " ....well I want and need proof...for once I just

want to walk in to a hospital with certainty as to what is wrong and

get treated like we know what we are talking about. Only a few drs

understand and the rest are unwilling to be taught. Meanwhile how

can I be an advocate for the children if I am losing the fight

myself....some days I simply want to give up fighting and just let

them screw up and say " told u so " ! but it hurts my children not

them....

> we have had one child biopsied in Atlanta, nothing from

that....except to be told " if this test is negative your child does

not have MITO " . then to be told " o, that's not true... " ARGH what is

true?? we just had an exercise test done where u squeeze a ball and

draw lactic acid and carbon dioxide levels....one child was negative

and the other didn't do it long enough- so inconclusive! now we are

all on cocktails, so how do we accurately test for anything????

Please..is there anyone out there who really feels this way??

> I feel like a real failure to protect and failure for possibly

giving this to my kids...5 of them....when I see my son with a tube

out of his stomach I really feel like a failure.....and I know more

is coming....

> sorry for so long, I just need to know I am not alone....we have

lost ALL our friends due to this " disease " and feel very

abandoned....

> Donna

> wife to Rod, and 5 kids with " working diagnosis of mito " for all

of us....

[Guest guest]

Donna,

I gave you the wrong email address

jenniferkaempf@...

Sorry just got it

> > I am at my wits end. Not sure what to feel or think or even say

or

> ask.

> > For 15 years we have dealt with medical problems with no answers

> as to why we have these strange medical issues...we have been told

I

> have maunchousins disorder, which offended me greatly. And we have

> been told its a fluke in the systems....

> > We went through genetic counseling after we were trying for

> another child, only to be told " the child u have so many issues

> with tried to miscarry itself and u fought to keep it viable,

> sometimes the body knows best " ...in other words it is my fault.

> > After our last child was born it was obvious there were

immediate

> issues..and after a few months it snowballed until one metabolic

Dr

> got involved and diagnosed possible mito. from that point it was

> easy to look at all the kids and realize this was the case with

them

> all....and me! Once we began clinical visits and testing it was

> obvious. EXCEPT no positive tests to show what type. blood work

> looks questionable but never definite....way too many organs

> involved, and too many medical issue to not be the answer, we get

> told....now we come to this past month....

> > one child goes into the hospital for G tube placement...never a

> problem until past year! now all of a sudden seizures appear and

> heat rates go crazy, blood pressure soars...etc. Mito Dr (Dr

Korson)

> is sure of the diagnosis now!! BUT..we still have no " proof " or

> specific name....the treatment from other drs and staff is like we

> are crazy. They say " well this is ok, so what if he has diarrhea,

he

> doesn't need to drink that much, its only a seizure post surgery

> probably...... " ok...I get it can be normal for some kids....or

even

> not a real problem...but my child is different. I keep getting

told

> about cancer kids and their needs, but my kids get left to fall

> through the cracks....social service people at the hospital tell

us

> to be vocal, when we do it is considered rude on our behalf....if

we

> don't, something goes wrong, we get asked why we didn't speak up.

I

> am starting to hate drs! Suddenly we went from medical problems

> requiring medicine, to medical problems requiring the use of 3

> wheelchairs, tubes, tubing, syringes, hospital beds, pumps and

> cpaps.....yet there is no answer as to WHY we need this stuff

> except " working diagnosis of Mito " and " we really believe fully

> this is the case " ....well I want and need proof...for once I just

> want to walk in to a hospital with certainty as to what is wrong

and

> get treated like we know what we are talking about. Only a few drs

> understand and the rest are unwilling to be taught. Meanwhile how

> can I be an advocate for the children if I am losing the fight

> myself....some days I simply want to give up fighting and just let

> them screw up and say " told u so " ! but it hurts my children not

> them....

> > we have had one child biopsied in Atlanta, nothing from

> that....except to be told " if this test is negative your child

does

> not have MITO " . then to be told " o, that's not true... " ARGH what

is

> true?? we just had an exercise test done where u squeeze a ball

and

> draw lactic acid and carbon dioxide levels....one child was

negative

> and the other didn't do it long enough- so inconclusive! now we

are

> all on cocktails, so how do we accurately test for anything????

> Please..is there anyone out there who really feels this way??

> > I feel like a real failure to protect and failure for possibly

> giving this to my kids...5 of them....when I see my son with a

tube

> out of his stomach I really feel like a failure.....and I know

more

> is coming....

> > sorry for so long, I just need to know I am not alone....we have

> lost ALL our friends due to this " disease " and feel very

> abandoned....

> > Donna

> > wife to Rod, and 5 kids with " working diagnosis of mito " for all

> of us....

[Guest guest]

thank you all for writing. In my heart I know I am not alone, I just feel like that when all we do is fight to be heard and no one seems to listen to us. Then I feel like I must be dumb, stupid, ignorant of real life, overbearing or worse, paranoid. Only a handful of Dr's really understand and the others just say "sure...", or they ask How we know for sure...I am just tired of trying to prove myself or my kids illness. I guess what I need is onfidence that we are able to do what we need to do to get the care my kids and I deserve.

I feel guilty when my kids are healthy and others are sick, but at the same time feel blessed by that. It is an emotional rollercoaster that I am wanting to get off for a few days. Plus I am very tired and trying hard to stay healthy...5 weeks in a hospital EVERY day is too much....I am really exhausted.

Thank you all for listening and being supportive!

Donna

Mito mom of 5 mito kids.

[Guest guest]

Dear

Donna:

You are not

alone! We have two boys (Ben – 9 (today!)

and Seth 13). They both have mito

and I’ll bet that I do, too. I

have never been questioned or doubted (at least to my face) about their

problems or diagnosis. For that I

am grateful. However, for a long

time doctors told us that Seth’s problems were all unrelated. This was until 1997 when he lost muscle

strength, too. That combined with

his cognitive problems, seizures and other miscellaneous problems brought the

doc to wonder about mito. Ben was

a baby when Seth was diagnosed. As

small problems began to arise with Ben, no they can’t be related to Seth’s

problems. Well, when he started

seizures, no one would deny it any longer. It’s devastating to feel that you’ve passed it on and

devastating to feel that mito has infected these beautiful kids we love. It is only magnified by the love you

have for 5! I am sorry you have to

deal with this. Please know you

are not alone.

Cindy

·

I just need to know I am not

alone.... Donna.

[Guest guest]

My husband is my biggest supporter NOW. It took a few years but now after all the trouble I have had with Dr's, I make him go to the big appts with me..it has helped ALOT.

Although I have heard recently there are some Drs who are terrified of me when I am right! So maybe I am starting to win some respect as well..but boy do I understand the "meaningful discussions"...we have had plenty.

It has been nice talking with you as you seem to know my journey so well.

and I guess its nice to know I am normal, and I guess very "healthy"!

Donna

mito mom of 5 mito kids

Re: venting....trust me..VERY LONG Donna

Donna, I am glad what I shared didn't stress you out too much. I can remember spending nights in tears wondering why people thought the things I perceived they thought about me and the kids and their illness. It is a miracle that my poor husband has hung in there with all of the stress we have lived through. He tries to be supportive, but truly does not understand the kids illness to the point that I do. It was even a point of several "meaningful discussions" we have had in the past. If he would just learn a little more than maybe these doctors wouldn't think I was so crazy, we would both be crazy together! LOL I do know that when he was involved for some reason they the doctors tended to listen a heck of a lot more at first. It is definitely a long road with many a winding turns for sure this Mito Road we travel, some not so pleasant at all. I know when I found out we were not the only parents dealing with this rare disease was the day I began to return to some normalcy. Our oldest was however 6 almost 7 years old by then, and we had lived through some crazy stuff by then, including the munchousen accusation. But you know, we have survived and our kids are still with us, and for that I am eternally grateful for sure. Support groups of other parents who are going through the same things are definitely a help! So any time girl you are feeling frustrated you just vent away! The fact that you will vent is a very healthy sign you know! LOLHugs! O Please contact mito-owner with any problems or questions.