Re: Question - Lactic Acid

[Guest guest]

-

I know you are not into the media, but I spoke with 48 hours recently and

they are looking for parents who have lost their child to this SICK

accusation of innocent people. My heart goes out to you. They are airing a

story in the fall, I am sure I can find 's number if you are interested.

You are in my thoughts and prayers. Pray for those nasty people who accused

you of this and have your precious child. Please let me know if I can help.

Michele

[Guest guest]

, I agree. I know it would add even more stress to do this, but it

sounds like these people could be a resource for you and thru doing this you

may help others too. Praying for you. S.

Re: Question - Lactic Acid

>From: MichSull@...

>

>-

>I know you are not into the media, but I spoke with 48 hours recently and

>they are looking for parents who have lost their child to this SICK

>accusation of innocent people. My heart goes out to you. They are airing a

>story in the fall, I am sure I can find 's number if you are

interested.

>You are in my thoughts and prayers. Pray for those nasty people who accused

>you of this and have your precious child. Please let me know if I can

help.

>Michele

>

>>Brought to you by www.imdn.org - an on-line support group for those

affected by mitochondrial disease.

>

[Guest guest]

, I agree. I know it would add even more stress to do this, but it

sounds like these people could be a resource for you and thru doing this you

may help others too. Praying for you. S.

Re: Question - Lactic Acid

>From: MichSull@...

>

>-

>I know you are not into the media, but I spoke with 48 hours recently and

>they are looking for parents who have lost their child to this SICK

>accusation of innocent people. My heart goes out to you. They are airing a

>story in the fall, I am sure I can find 's number if you are

interested.

>You are in my thoughts and prayers. Pray for those nasty people who accused

>you of this and have your precious child. Please let me know if I can

help.

>Michele

>

>>Brought to you by www.imdn.org - an on-line support group for those

affected by mitochondrial disease.

>

[Guest guest]

I would appreciate any help you could offer...and i suppose speaking to them

about this may help, I 'd be interested in seeong how they are going to

handle this.I wish I could get a doc who understands the spectrum of mito

disorders to review Jonah's medical records,it could clear us of this

charge, but it would need to be a doctor in the US as the hospital accusing

us here in Canada is so respected and revered that we could not get an

objective review if we tried.Thanks for writing, and let me know how it

goes!

>From: MichSull@...

>Reply-To: Mitoonelist

>To: Mitoonelist

>Subject: Re: Question - Lactic Acid

>Date: Fri, 8 Oct 1999 23:57:34 EDT

>

>-

>I know you are not into the media, but I spoke with 48 hours recently and

>they are looking for parents who have lost their child to this SICK

>accusation of innocent people. My heart goes out to you. They are airing a

>story in the fall, I am sure I can find 's number if you are

>interested.

>You are in my thoughts and prayers. Pray for those nasty people who accused

>you of this and have your precious child. Please let me know if I can

>help.

>Michele

>

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

>Brought to you by www.imdn.org - an on-line support group for those

>affected by mitochondrial disease.

><< text3.html >>

[Guest guest]

I would appreciate any help you could offer...and i suppose speaking to them

about this may help, I 'd be interested in seeong how they are going to

handle this.I wish I could get a doc who understands the spectrum of mito

disorders to review Jonah's medical records,it could clear us of this

charge, but it would need to be a doctor in the US as the hospital accusing

us here in Canada is so respected and revered that we could not get an

objective review if we tried.Thanks for writing, and let me know how it

goes!

>From: MichSull@...

>Reply-To: Mitoonelist

>To: Mitoonelist

>Subject: Re: Question - Lactic Acid

>Date: Fri, 8 Oct 1999 23:57:34 EDT

>

>-

>I know you are not into the media, but I spoke with 48 hours recently and

>they are looking for parents who have lost their child to this SICK

>accusation of innocent people. My heart goes out to you. They are airing a

>story in the fall, I am sure I can find 's number if you are

>interested.

>You are in my thoughts and prayers. Pray for those nasty people who accused

>you of this and have your precious child. Please let me know if I can

>help.

>Michele

>

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

>Brought to you by www.imdn.org - an on-line support group for those

>affected by mitochondrial disease.

><< text3.html >>

[Guest guest]

You may be right...it is just so scary.It gets to the point wher if you are

angry and yell at these people,you are a volatile parent or altenately if

you are calm and keep you cool, you are cold and calculating.We feel like

we can't do anything right and so every move we make and every word we utter

is under the microscope.Maybe public support could help, but perhaps it

could look bad too..itis hard to know.I just want Jonah home.

>

>Reply-To: Mitoonelist

>To: <Mitoonelist>

>Subject: Re: Question - Lactic Acid

>Date: Sat, 9 Oct 1999 09:14:23 -0700

>

>, I agree. I know it would add even more stress to do this, but it

>sounds like these people could be a resource for you and thru doing this

>you

>may help others too. Praying for you. S.

>

> Re: Question - Lactic Acid

>

>

> >From: MichSull@...

> >

> >-

> >I know you are not into the media, but I spoke with 48 hours recently and

> >they are looking for parents who have lost their child to this SICK

> >accusation of innocent people. My heart goes out to you. They are airing

>a

> >story in the fall, I am sure I can find 's number if you are

>interested.

> >You are in my thoughts and prayers. Pray for those nasty people who

>accused

> >you of this and have your precious child. Please let me know if I can

>help.

> >Michele

> >

> >>Brought to you by www.imdn.org - an on-line support group for those

>affected by mitochondrial disease.

> >

>

>

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

>Brought to you by www.imdn.org - an on-line support group for those

>affected by mitochondrial disease.

><< text3.html >>

[Guest guest]

You may be right...it is just so scary.It gets to the point wher if you are

angry and yell at these people,you are a volatile parent or altenately if

you are calm and keep you cool, you are cold and calculating.We feel like

we can't do anything right and so every move we make and every word we utter

is under the microscope.Maybe public support could help, but perhaps it

could look bad too..itis hard to know.I just want Jonah home.

>

>Reply-To: Mitoonelist

>To: <Mitoonelist>

>Subject: Re: Question - Lactic Acid

>Date: Sat, 9 Oct 1999 09:14:23 -0700

>

>, I agree. I know it would add even more stress to do this, but it

>sounds like these people could be a resource for you and thru doing this

>you

>may help others too. Praying for you. S.

>

> Re: Question - Lactic Acid

>

>

> >From: MichSull@...

> >

> >-

> >I know you are not into the media, but I spoke with 48 hours recently and

> >they are looking for parents who have lost their child to this SICK

> >accusation of innocent people. My heart goes out to you. They are airing

>a

> >story in the fall, I am sure I can find 's number if you are

>interested.

> >You are in my thoughts and prayers. Pray for those nasty people who

>accused

> >you of this and have your precious child. Please let me know if I can

>help.

> >Michele

> >

> >>Brought to you by www.imdn.org - an on-line support group for those

>affected by mitochondrial disease.

> >

>

>

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

>Brought to you by www.imdn.org - an on-line support group for those

>affected by mitochondrial disease.

><< text3.html >>

[Guest guest]

~The number for , the founder of MAMA, the Munchausen's

group is . I called and let her know that you would be in contact

with her. Good luck and please keep me posted on the situation. Michele

[Guest guest]

Thanks Michele,I will call her,I am aware of who she is,and let you know how

it goes.

>From: MichSull@...

>Reply-To: Mitoonelist

>To: Mitoonelist

>Subject: Re: Question - Lactic Acid

>Date: Sun, 10 Oct 1999 16:54:16 EDT

>

>~The number for , the founder of MAMA, the Munchausen's

>group is . I called and let her know that you would be in

>contact

>with her. Good luck and please keep me posted on the situation. Michele

>

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

>Brought to you by www.imdn.org - an on-line support group for those

>affected by mitochondrial disease.

><< text3.html >>

[Guest guest]

- Sorry for the delayed response - life has been challenging for a

few weeks but all is getting back to normal. I have 700 unread messages on

the mito queue - egads. At any rate, Kennedy has had no liver damage to our

knowledge, or any other organic damage. We believe that her sight has

failed significantly, although her hearing appears to be normal. Glad to

answer any questions at all - just e-ask.

Hairston

Kennedy's Dad

CIII

Re: Question - Lactic Acid

> From: MichSull@...

>

> Hairston-

> Thanks for the response. Alot of things are clicking in my brain now as it

> has been a long journey for us to even get a little info from the Dr.'s.

You

> are very lucky to have doctor friends.

> I read 's story, know a little about Kennedy, and have read the

Hirsh

> site and have been in contact with Dave Bonney.

> Nolan's history is LONG and complex but his infancy sounds familiar to

some

> extent. It used to take me at least an hour per feeding as he had a weak

> suck. He was switched from breast milk, a slew of formulas, and then to

> Pregestimil (sp?)-$25.00 a can-wow was that costly. He had severe colitis

at

> 3 months.

> Nolan also has turned blue at 5 weeks due to broncilitis and was in an O2

> tent for 4 days. Currently, he is " croupy " and I am sure he will end up at

> the pedi's soon as he is allergic to sorbitol, which is in cough medicine.

I

> am sure something is brewing. His blueness was quite substantial Sunday

but

> his O2 rate never dropped below 93 ( I am sure it was lower but he is so

> tactically defensive, we can only test his O2 level when he is sleeping.)

> He also became a floppy baby around 5 months.

> Now the additional hell we have been through is that we were accused of

> Munchausen's by proxy!!!!! I know they know now I am done with my verbal

> lashing of the " professionals " and now I will just go for the jugular!!

> With the skeletal atrophy, you say it it is due to poor energy

transport-part

> of Complex III? Nolan has had 3, maybe 4 regressions in muscle strength.

He

> becomes quite " colorful " and his arches are fallen quite a bit. This, I

take

> it, will get worse, would love to know where we go from here.

> Has Kennedy's liver been affected? Nolan was jaundiced for 4 months and

still

> is a tinge of yellow. The repeat LFT were sent out yesterday. Now, the

> waiting game we are all so good at. It took us 9 months for his muscle

biopsy

> results-they were lost!!!!

> I really wish I knew then about fresh vs. frozen as I am contemplating

> Atlanta or Cleveland and will know more in a week or 2 from results and

Dr.'s

> appts.

> We are moving to a ranch 2 streets from the beach to see if that helps

> Nolan's breathing and overall status. We need to limit beach time as he

gets

> quite colorful when cold but hope the ocean air helps. We think a ranch

will

> save our backs from carrying Nolan up and down the stairs.

> I know I am scattered, but Nolan has not slept well his whole life, mainly

> due to GI issues.

> Thanks. Michele

>

> > Brought to you by www.imdn.org - an on-line support group for those

affected by mitochondrial disease.

>