Mito : Messages : 103655-103687 of 104814

#103658

From: m poole <mbpudd@...>
Date: Wed Mar 2, 2011 5:28 pm
Subject: Re: Pediatrician in FL

mbpudd

We live in Ocala, Fl and just went through the Mayo Clinic in Jacksonville for a mito specialist. We saw Dr. Dimburg who is a neor. with a specialty in mito. My daughter is 21 he might see everyone because that is his field. We liked him, but he did not agree on the findings of the Cleveland Clilnic in OH about the dx of mito for my daughter. We are seeing Dr.. Carney in Gainesville who was trained by Dr.Cohen and knows quite a few doctors in OH who specialize in mito. He is a pediatric neorologist but sees all ages, including my daughter, we really like him, his wait time is rediculous but he does not hurry. I have never had any luck with the primary care doctors to help with the mito, so I usually follow-up with neoro. dept. for most things and have the pediatrician follow the recommendations.

From: Sylvia Mangsen <syl_m333@...>
To: Mito@yahoogroups.com
Sent: Tue, March 1, 2011 9:21:59 PM
Subject: Re: [Mito] Pediatrician in FL

Hope this helps,

Sylvia mother of triplets almost 8 yrs old

From: michele pelfrey <mbeesonkids@...>
To: Mito@yahoogroups.com
Sent: Tue, March 1, 2011 8:57:56 PM
Subject: [Mito] Pediatrician in FL

Hi. We are relocating to Jacksonville, Florida this summer. Does anyone know of a good pediatrician who understands Mito?

Thanks,

Michele

#103659

From: "LNerenhausen" <LNerenhausen@...>
Date: Wed Mar 2, 2011 8:26 pm
Subject: Re: Pediatrician in FL

MaryBeth:

Not sure why, but my email didn't go through the last time. I'm going to try calling you with the number you left me. I know when I type in your yahoo account it says something totally different on my server when it comes back to me. I will let you know what it says when I call you.

Lisa Nerenhausen

P.S. Is there a good time to call you? I believe you are an hour ahead of our time zone in Wisconsin.

----- Original Message -----

From: m poole

To: Mito@yahoogroups.com

Sent: Wednesday, March 02, 2011 11:28 AM

Subject: Re: [Mito] Pediatrician in FL

We live in Ocala, Fl and just went through the Mayo Clinic in Jacksonville for a mito specialist. We saw Dr. Dimburg who is a neor. with a specialty in mito. My daughter is 21 he might see everyone because that is his field. We liked him, but he did not agree on the findings of the Cleveland Clilnic in OH about the dx of mito for my daughter. We are seeing Dr.. Carney in Gainesville who was trained by Dr.Cohen and knows quite a few doctors in OH who specialize in mito. He is a pediatric neorologist but sees all ages, including my daughter, we really like him, his wait time is rediculous but he does not hurry. I have never had any luck with the primary care doctors to help with the mito, so I usually follow-up with neoro. dept. for most things and have the pediatrician follow the recommendations.

From: Sylvia Mangsen <syl_m333@...>
To: Mito@yahoogroups.com
Sent: Tue, March 1, 2011 9:21:59 PM
Subject: Re: [Mito] Pediatrician in FL

Hi, we live in Orlando, FL my daughter is seen by Nemours in Orlando they are specialist in various areas in the medical field. I have been referred to go to the Nemours in Jacksonville (believe this is a hub for Florida). Call them ask for the Genetics doctor as I believe they also have Pediaticians.

Hope this helps,

Sylvia mother of triplets almost 8 yrs old

From: michele pelfrey <mbeesonkids@...>
To: Mito@yahoogroups.com
Sent: Tue, March 1, 2011 8:57:56 PM
Subject: [Mito] Pediatrician in FL

Hi. We are relocating to Jacksonville, Florida this summer. Does anyone know of a good pediatrician who understands Mito?

Thanks,

Michele

#103660

From: Alyssa Davi <johnalyssa43@...>
Date: Thu Mar 3, 2011 8:15 pm
Subject: MitoAction tele-conference- the "mito cocktail"

johnalyssa43

Are you wondering what type of supplements and medications are frequently used to treat mitochondrial disease?

Please join MitoAction on Tuesday, March 8th, 2012 at 12:30 pm EST for an informal discussion about the “mito cocktail”. We will discuss what supplements and medications are most frequently used to treat mitochondrial disease.

The connection between autism and mitochondrial disease, although recognized for over a decade, is rapidly gaining traction and attention. This is especially true with the recent publication of an article linking mitochondrial dysfunction and autism in the Journal of American Medical Association (JAMA).

Calls on the link between ASD and mitochondrial disease take place every 2nd Tuesday of the month at 12:30 pm EST. To participate in this resource-share by telephone, please call, 1-866-414-2828 and enter code 017921# at the prompt.

This meeting will be recorded and posted on MitoAction along with a summary following the meeting. To find summaries from other presentations, visit www.mitoaction.org

All are welcome. Please feel free to forward this announcement to other interested families.

For more information on mitochondrial disease and autism, please visit www.mitoaction.org

Email your questions to:

Autism@...

#103661

From: michele pelfrey <mbeesonkids@...>
Date: Thu Mar 3, 2011 10:01 pm
Subject: Re: Pediatrician in FL

mbeesonkids

Thank you to everyone for the replies and information.

Michele

From: Sylvia Mangsen <syl_m333@...>
To: Mito@yahoogroups.com
Sent: Tue, March 1, 2011 9:21:59 PM
Subject: Re: [Mito] Pediatrician in FL

Hope this helps,

Sylvia mother of triplets almost 8 yrs old

From: michele pelfrey <mbeesonkids@...>
To: Mito@yahoogroups.com
Sent: Tue, March 1, 2011 8:57:56 PM
Subject: [Mito] Pediatrician in FL

Hi. We are relocating to Jacksonville, Florida this summer. Does anyone know of a good pediatrician who understands Mito?

Thanks,

Michele

#103662

From: "Erin McKenzie-Christensen" <erinmck@...>
Date: Sat Mar 5, 2011 6:26 am
Subject: sleep apnea

erinmck64

My husband Jeff has sleep apnea and last night i had a sleep study done and I have to wait til end of march for results. I was lucky to get in on that apmt as it was a cancellation apparently good job we were both available that day and time!!!

In any case one of the sleep techs was very nice and we were just chatting last night a bit and i happened to ask him where can you get a cheaper machine from cause we were quoted $2000 for the machine plus the mask and he said it was cheaper on the net probably from US or NZ and so i am wondering for anyone who knows do you know of a cheap place to get a CPAP machine preferably an auto adjusting one thats whats been recommended for my husband we have put it off for so long because we dont ave $2000 and basically the chemist which is a CPAP supplier did not have any other ideas where to get them. The public system takes 2 years for people to get in and only provides a free machine to those who have a concession card which my husband does not. I did a google search and ive come up with machines that are as little as $600 in comparison to $2000 thats a pretty big saving. Jeff will have to work out what one is best for him and we can assume that when he goes to the sleep dr in May that he will want him to have another sleep study done and that will provide the prescription i reckon he actually rung up for that apmt last year but couldn't get in til may!!!

Any websites would be appreciated i am so happy i decided to ask! I dont know if i need one yet but at least i am on a concession card therefore mine will be free if i need it have to wait til end of march to find out. It was OK apart from making my face red from the micropore tape that they used which im allegic to. I didn't realise how red my face was til my aunt came over. I do the whole "dont say anything about medical stuff unless its life or death or an actual diagnosis" type thing and ive done that for over a year now so of course i didn't mention that i had had a sleep study and she came over today on her way to the library and gave me an early easter present cause she couldn't wait til then to give it to me and i wanted to show her the crochet earrings i made and the beading stuff i made too.

anyway she was like why is your face red is it still from the allergy rash (from the antibiotics) and i sorta choked cause i haven't looked in the mirror!!!! I knew it was from the tape but i didn't want to tell her. If the result is negative then she doesn't need to know and if i need a machine well she doesn't really need to know either!!!! its so much easier not saying anything. She only worries which makes me worry which is not good for me so i just dont say anything. She is one of those "pain cant be that bad you shouldn't need meds and you should and you should do x y and z to fix everything" people and cause my mum her sister had strokes and kept squeezing a ball to increase her hand strength julie always comments on how if my mum could do x then so could i. So the less i tell her the better. If i ever get a confirmed dx of mito of course i will tell her and keep it very very simple and possibly give her something to read. And make sure that she knows that all the drs are doing their best to manage the condition. i think she gets it that i cant walk but she has never understood anything that was wrong and when i was in Uni with chronic fatigue syndrome she kept telling me i should get out of bed and do this and that i was incredibly ill and could hardly do anythign at all at that point and she would say you will fail uni if you dont go of course i DID fail some subjects at uni but bec i was so ill there really was nothingi could do about it!!!!! So these days i dont say much she doesn't ask and instead of getting a phone call every 2 days to ask what x dr is doing to "fix me" i dont get that bec she doesn't know anything about anything, i did tell her i was seeing a geneticist and that they were doing blood genetic testing and thats it and i said i will let you know when i get the results. Well the first lot the mtDNA they were neg but its hard to explain that that is only 37 diseases out of 400 and therefore its definately NOT ruled out so i dont think i even told her the results or that i have to wait til july for the mito dx medomics test to become available in Adelaide. It is a bit hard but this way i can still have a relationship with her and its less worry for me.

Erin

Reply | Messages in this Topic (9)

#103663

From: mom2colemankidz3@...
Date: Sun Mar 6, 2011 10:35 am
Subject: Scholarship for youth with Mito or child of adult with Mito

heidicoleman...

It's Scholarship Application Time!

I will pass along info as I receive it; most scholarships have deadlines between March and May for the Fall 2011 semester. This is an application for a group of about a dozen individual scholarships offered to students under age 25 who either have cancer or other life-threatening illnesses or have a parent with such an illness. Here's the link to more detailed information: http://www.patientadvocate.org/index.php?p=69

Good Luck!

HeidiC

If you would like more information about scholarships and college planning for youth with Mito, be sure to visit MitoAction: http://www.mitoaction.org/red-tape/transition-adulthood

#103664

From: "LNerenhausen" <LNerenhausen@...>
Date: Sun Mar 6, 2011 4:54 pm
Subject: Re: Scholarship for youth with Mito or child of adult with Mito

Heidi:

Went I went on line to see the scholarships they only mention if the person under 25 has the life threatening illness. There is nothing mentioned about a parent having cancer. I was curious because my husband is recovering still from his cancer and with our daughter Leah with issues we have limited income at the moment. How did you find out if it was parent with cancer that the child would qualify.

Thanks for the link.

Lisa Nerenhausen

mom to Leah

----- Original Message -----

From: mom2colemankidz3@...

To: mitodiseasesupport@yahoogroups.com ; Mito@yahoogroups.com ; mitoldies@yahoogroups.com ; adultmito@yahoogroups.com

Sent: Sunday, March 06, 2011 4:35 AM

Subject: [Mito] Scholarship for youth with Mito or child of adult with Mito

It's Scholarship Application Time!

I will pass along info as I receive it; most scholarships have deadlines between March and May for the Fall 2011 semester. This is an application for a group of about a dozen individual scholarships offered to students under age 25 who either have cancer or other life-threatening illnesses or have a parent with such an illness. Here's the link to more detailed information: http://www.patientadvocate.org/index.php?p=69

Good Luck!

HeidiC

If you would like more information about scholarships and college planning for youth with Mito, be sure to visit MitoAction: http://www.mitoaction.org/red-tape/transition-adulthood

#103665

From: "nightsong@..." <nightsong@...>
Date: Sun Mar 6, 2011 7:23 pm
Subject: questions

norman_stretton

I am a chronic worrier so i have some questions maybe you can help me with. Kim is usually very thin at around 88 pounds 90 on a heavy day. she is 4foot 9 inches. In the last twelve days she has gained 10 pounds. She has always been a terrific eater. She eats any and everything and lots of it in spite of her small size. for the last month she has been on a head banging spree. This is completely different behavior for her. yesterday it stopped and she is now more or less crashed. She is sleepy, quiet and eating much less hungry than usual. This is her usual pattern of hyperactivity and then sleepiness.k I am concerned with the weight gain; especialy in light of the elevated ammonia level.The level wasnt that high ( sorry I dont know the exact level) and her liver function tests were normal. The blood work was done a month ago I want to call the doc in thed morning and ask about the weight gain and let him know she is in crash mode. She has not started her mito regimen yet. My question to all of you is do you see these kind of things in your kids? Have you had weight gains and losses of more than two or three pounds in week. I know we are stil battling her thyroid and that could be what I am seeing but we wont do tests on that until next week. At 50mcg she was still hyperthyroid. Any words of wisdom would be appreciated. I am worried

Norman and Susie Stretton
Nightsong Farms
Dry Creek, La

http://www.nonais.org
http://www.downsizedc.org
http://www.libertyark.net
Saanen Dairy Goats, Angora Goats, Brecknock Hill Cheviot Sheep, mohair, wool, crocheted items,handcrafted goat milk soap, woodwork, poultry and eggs

Reply | Messages in this Topic (32)

#103666

From: Lee Collins <leecol211@...>
Date: Sun Mar 6, 2011 10:06 pm
Subject: Re: questions

leecol211

I would be concerned about a gain od 10 lbs in 12 days. High ammonia and thyroid problems can cause behavior changes.

How old is Kim?

Lee

From: "nightsong@..." <nightsong@...>
To: meta-mito-autism@yahoogroups.com
Cc: mito@yahoogroups.com
Sent: Sun, March 6, 2011 11:23:10 AM
Subject: [Mito] questions

Reply | Messages in this Topic (32)

#103667

From: Veronica <veronica197620@...>
Date: Sun Mar 6, 2011 11:18 pm
Subject: Re: questions

veronica197620

Hello, is she retaining fluids? My son was in the hospital a couple of weeks ago and his ammonia level was high and he was very sleepy the whole time we were there...

*Veronica*

On Mar 6, 2011, at 4:06 PM, Lee Collins <leecol211@...> wrote:

I would be concerned about a gain od 10 lbs in 12 days. High ammonia and thyroid problems can cause behavior changes.

How old is Kim?

Lee

From: "nightsong@..." <nightsong@...>
To: meta-mito-autism@yahoogroups.com
Cc: mito@yahoogroups.com
Sent: Sun, March 6, 2011 11:23:10 AM
Subject: [Mito] questions

I am a chronic worrier so i have some questions maybe you can help me with. Kim is usually very thin at around 88 pounds 90 on a heavy day. she is 4foot 9 inches. In the last twelve days she has gained 10 pounds. She has always been a terrific eater. She eats any and everything and lots of it in spite of her small size. for the last month she has been on a head banging spree. This is completely different behavior for her. yesterday it stopped and she is now more or less crashed. She is sleepy, quiet and eating much less hungry than usual. This is her usual pattern of hyperactivity and then sleepiness.k I am concerned with the weight gain; especialy in light of the elevated ammonia level.The level wasnt that high ( sorry I dont know the exact level) and her liver function tests were normal. The blood work was done a month ago I want to call the doc in thed morning and ask about the weight gain and let him know she is in crash mode. She has not started her mito regimen yet. My question to all of you is do you see these kind of things in your kids? Have you had weight gains and losses of more than two or three pounds in week. I know we are stil battling her thyroid and that could be what I am seeing but we wont do tests on that until next week. At 50mcg she was still hyperthyroid. Any words of wisdom would be appreciated. I am worried

Norman and Susie Stretton
Nightsong Farms
Dry Creek, La

http://www.nonais.org
http://www.downsizedc.org
http://www.libertyark.net
Saanen Dairy Goats, Angora Goats, Brecknock Hill Cheviot Sheep, mohair, wool, crocheted items,handcrafted goat milk soap, woodwork, poultry and eggs

Reply | Messages in this Topic (32)

#103670

From: "nightsong@..." <nightsong@...>
Date: Mon Mar 7, 2011 3:43 pm
Subject: Re: Digest Number 8145

norman_stretton

Thanks everyone for your responses. Kim is 32. This morning she had an explosive urination. She now weighs 94 instead of 97 pounds. Her doctors are all aware of the medications and cocktail she is on and everything is presription. we dont give her anything without asking them. She is very sensitive to medications. She is having some breathing difficulty (she is on a trach and has a cold so that presents a problem as well). She is due for a thyroid test. I a going to ask the docs to move the testing up so we can know her levels and whether thyroid or ammonia of something else is causing the fluid retention. The behavior for the last three days has been really good so far. Sleepy yesterday, today up and at em. Will keep you guys posted. Thanks again for the suggestions and support.

-----Original Message-----
From: <Mito@yahoogroups.com>
Sent 3/7/2011 3:54:50 AM
To: Mito@yahoogroups.com
Subject: [Mito] Digest Number 8145

There are 7 messages in this issue.
Topics in this digest:
1a. Scholarship for youth with Mito or child of adult with Mito
From: mom2colemankidz3@...
1b. Re: Scholarship for youth with Mito or child of adult with Mito
From: LNerenhausen
2.1. questions
From: nightsong@...
2.2. Re: questions
From: Lee Collins
2.3. Re: questions
From: Veronica
2.4. Re: [Meta-mito-autism] questions
From: Leigh leighcpe
2.5. Re: [Meta-mito-autism] questions
From: Leigh leighcpe
Messages
________________________________________________________________________
1a. Scholarship for youth with Mito or child of adult with Mito
Posted by: "mom2colemankidz3@..." mom2colemankidz3@... heidicol
eman2002
Date: Sun Mar 6, 2011 2:35 am ((PST))
It's Scholarship Application Time!
I will pass along info as I receive it; most scholarships have deadlines be
tween March and May for the Fall 2011 semester.  This is an application for
a group of about a dozen individual scholarships offered to students under
age 25 who either have cancer or other life-threatening illnesses or have
a parent with such an illness.  Here's the link to more detailed informatio
n: http://www.patientadvocate.org/index.php?p=69
Good Luck!
HeidiC
If you would like more information about scholarships and college planning
for youth with Mito, be sure to visit MitoAction: http://www.mitoaction.org/red-tape/transition-adulthood
Messages in this topic (2)
________________________________________________________________________
1b. Re: Scholarship for youth with Mito or child of adult with Mito
Posted by: "LNerenhausen" LNerenhausen@... lisanerenhausen
Date: Sun Mar 6, 2011 8:54 am ((PST))
Heidi:
Went I went on line to see the scholarships they only mention if the person
under 25 has the life threatening illness.  There is nothing mentioned abo
ut a parent having cancer.  I was curious because my husband is recovering
still from his cancer and with our daughter Leah with issues we have limite
d income at the moment.  How did you find out if it was parent with cancer
that the child would qualify.
Thanks for the link.
Lisa Nerenhausen
mom to Leah
----- Original Message -----
From: mom2colemankidz3@...
To: mitodiseasesupport@yahoogroups.com ; Mito@yahoogroups.com ; mitoldies
@yahoogroups.com ; adultmito@yahoogroups.com
Sent: Sunday, March 06, 2011 4:35 AM
Subject: [Mito] Scholarship for youth with Mito or child of adult with Mi
to
It's Scholarship Application Time!
I will pass along info as I receive it; most scholarships have deadlines
between March and May for the Fall 2011 semester.  This is an application for a group of about a dozen individual scholarships offered to students und
er age 25 who either have cancer or other life-threatening illnesses or hav
e a parent with such an illness.  Here's the link to more detailed informat
ion: http://www.patientadvocate.org/index.php?p=69
Good Luck!
HeidiC
If you would like more information about scholarships and college plannin
g for youth with Mito, be sure to visit MitoAction: http://www.mitoaction.org/red-tape/transition-adulthood
Messages in this topic (2)
________________________________________________________________________
________________________________________________________________________
2.1. questions
Posted by: "nightsong@..." nightsong@... norman_stretton
Date: Sun Mar 6, 2011 11:23 am ((PST))
I am a chronic worrier so i have some questions maybe you can help me with.
Kim is usually very thin at around 88 pounds 90 on a heavy day. she is 4fo
ot 9 inches. In the last twelve days she has gained 10 pounds. Sh
e has always been a terrific eater. She eats any and everything and lots of
it in spite of her small size. for the last month she has been on a head b
anging spree. This is completely different behavior for her. yesterday it s
topped and she is now more or less crashed. She is sleepy, quiet and eating
much less hungry  than usual. This is her usual pattern of hyperactiv
ity and then sleepiness.k I am concerned with the weight gain; especialy in
light of the elevated ammonia level.The level wasnt that high ( sorry
I dont know the exact level) and her liver function tests were normal. The
blood work was done a month ago I want to call the doc in thed morning and
ask about the weight gain and let him know she is in crash mode. She
has not started her mito regimen yet. My question to all of you is do you s
ee these kind of things in your kids? Have you had weight gains and lo
sses of more than two or three pounds in week. I know we are stil batt
ling her thyroid and that could be what I am seeing but we wont do tests on
that until next week. At 50mcg she was still hyperthyroid. Any words of wi
sdom would be appreciated. I am worried  Norman and Susie St
retton
Nightsong Farms
Dry Creek, La
http://www.nonais.org
http://www.downsizedc.org
http://www.libertyark.net
Saanen Dairy Goats, Angora Goats, Brecknock Hill Cheviot Sheep, mohair, woo
l, crocheted items,handcrafted goat milk soap, woodwork, poultry and eggs
Messages in this topic (32)
________________________________________________________________________
2.2. Re: questions
Posted by: "Lee Collins" leecol211@... leecol211
Date: Sun Mar 6, 2011 2:06 pm ((PST))
I would be concerned about a gain od 10 lbs in 12 days. High ammonia and th
yroid
problems can cause behavior changes.
How old is Kim?
Lee
________________________________
From: "nightsong@..." <nightsong@...>
To: meta-mito-autism@yahoogroups.com
Cc: mito@yahoogroups.com
Sent: Sun, March 6, 2011 11:23:10 AM
Subject: [Mito] questions
 
I am a chronic worrier so i have some questions maybe you can help me with.
Kim
is usually very thin at around 88 pounds 90 on a heavy day. she is 4foot 9
inches. In the last twelve days she has gained 10 pounds. She has
always been a
terrific eater. She eats any and everything and lots of it in spite of her
small
size. for the last month she has been on a head banging spree. This is
completely different behavior for her. yesterday it stopped and she is now
more
or less crashed. She is sleepy, quiet and eating much less hungry  tha
n usual.
This is her usual pattern of hyperactivity and then sleepiness.k I am conce
rned
with the weight gain; especialy in light of the elevated ammonia level.The
level
wasnt that high ( sorry I dont know the exact level) and her liver fun
ction
tests were normal. The blood work was done a month ago I want to call the d
oc in
thed morning and ask about the weight gain and let him know she is in
crash mode. She has not started her mito regimen yet. My question to a
ll of you
is do you see these kind of things in your kids? Have you had weight g
ains and
losses of more than two or three pounds in week. I know we are stil ba
ttling her
thyroid and that could be what I am seeing but we wont do tests on that unt
il
next week. At 50mcg she was still hyperthyroid. Any words of wisdom would
 be
appreciated. I am worried  
Norman and Susie Stretton
Nightsong Farms
Dry Creek, La
http://www.nonais.org
http://www.downsizedc.org
http://www.libertyark.net
Saanen Dairy Goats, Angora Goats, Brecknock Hill Cheviot Sheep, mohair, woo
l,
crocheted items,handcrafted goat milk soap, woodwork, poultry and eggs
Messages in this topic (32)
________________________________________________________________________
2.3. Re: questions
Posted by: "Veronica" veronica197620@... veronica197620
Date: Sun Mar 6, 2011 3:25 pm ((PST))
Hello, is she retaining fluids? My son was in the hospital a couple of week
s ago and his ammonia level was high and he was very sleepy the whole time
we were there...
*Veronica*
On Mar 6, 2011, at 4:06 PM, Lee Collins <leecol211@...> wrote:
I would be concerned about a gain od 10 lbs in 12 days. High ammonia and th
yroid problems can cause behavior changes.
How old is Kim?
Lee
From: "nightsong@..." <nightsong@...>
To: meta-mito-autism@yahoogroups.com
Cc: mito@yahoogroups.com
Sent: Sun, March 6, 2011 11:23:10 AM
Subject: [Mito] questions
I am a chronic worrier so i have some questions maybe you can help me with.
Kim is usually very thin at around 88 pounds 90 on a heavy day. she is 4fo
ot 9 inches. In the last twelve days she has gained 10 pounds. She has alwa
ys been a terrific eater. She eats any and everything and lots of it in spi
te of her small size. for the last month she has been on a head banging spr
ee. This is completely different behavior for her. yesterday it stopped and
she is now more or less crashed. She is sleepy, quiet and eating much less
hungry  than usual. This is her usual pattern of hyperactivity and then sl
eepiness.k I am concerned with the weight gain; especialy in light of the e
levated ammonia level.The level wasnt that high ( sorry I dont know the exa
ct level) and her liver function tests were normal. The blood work was done
a month ago I want to call the doc in thed morning and ask about the weigh
t gain and let him know she is in crash mode. She has not started
her mito regimen yet. My question to all of you is do you see these kind o
f things in your kids? Have you had weight gains and losses of more than tw
o or three pounds in week. I know we are stil battling her thyroid and that
could be what I am seeing but we wont do tests on that until next week. At
50mcg she was still hyperthyroid. Any words of wisdom would be appreciated
. I am worried
Norman and Susie Stretton
Nightsong Farms
Dry Creek, La
http://www.nonais.org
http://www.downsizedc.org
http://www.libertyark.net
Saanen Dairy Goats, Angora Goats, Brecknock Hill Cheviot Sheep, mohair, woo
l, crocheted items,handcrafted goat milk soap, woodwork, poultry and eggs
Messages in this topic (32)
________________________________________________________________________
2.4. Re: [Meta-mito-autism] questions
Posted by: "Leigh leighcpe" lleighcpe@... lleighcpe
Date: Sun Mar 6, 2011 4:16 pm ((PST))
I definitely would check her thyroid for weight gain. My son is on the chub
by side now that he is not as sick anymore and vomiting is under control, b
ut the weight gain was slow over time and not a quick thing.
When he had high ammonia he would be very tired, very sick looking and had
vomiting after eating. Sometimes refusing to eat and was cranky for most of
the time. He was skinny at that time.
Ask her doctor for a prescription to have the blood checked for ammonia in
the hospital (walk in) for an appropriate lab analysis. This is the only wa
y you'll know for sure if the ammonia is accurately high.
You can also put her on a diet containing less proteins, but do not elimina
te it, and supplementing with l-carnitine and ALA (follow ALA guide-lines a
t UMDF list of vitamins) might help, but not a guarantee and not a permanen
t solution. When my son has more meat than he is supposed to have, I give him Alka-Seltzer Gold (no aspirin), sometimes it helps but if he eats too mu
ch fat/protein, (fried chicken) he will get vomiting about 20-30 minutes af
ter he eats.
It seems that K is very skinny and 10 pounds is not a bad thing, so I would
not worry before hand unless if this continue to be a problem. Still needs
to ck thyroid.
It could just be that now she is feeling better after the surgery and start
ed to put some weight on, and that is a good thing, 88 pounds is low.
L
--- On Sun, 3/6/11, nightsong@... <nightsong@...> wrote:
From: nightsong@... <nightsong@...>
Subject: [Meta-mito-autism] questions
To: meta-mito-autism@yahoogroups.com
Cc: mito@yahoogroups.com
Date: Sunday, March 6, 2011, 2:23 PM
 
I am a chronic worrier so i have some questions maybe you can help me
with. Kim is usually very thin at around 88 pounds 90 on a heavy day. she
is 4foot 9 inches. In the last twelve days she has gained 10 poun
ds. She has always been a terrific eater. She eats any and everything and l
ots of it in spite of her small size. for the last month she has been on a
head banging spree. This is completely different behavior for her. yesterda
y it stopped and she is now more or less crashed. She is sleepy, quiet and
eating much less hungry  than usual. This is her usual pattern of hype
ractivity and then sleepiness.k I am concerned with the weight gain; especi
aly in light of the elevated ammonia level.The level wasnt that high (
sorry I dont know the exact level) and her liver function tests were norma
l. The blood work was done a month ago I want to call the doc in thed morni
ng and ask about the weight gain and let him know she is in crash mode
. She has not
started her mito regimen yet. My question to all of you is do you see thes
e kind of things in your kids? Have you had weight gains and losses of
more than two or three pounds in week. I know we are stil battling he
r thyroid and that could be what I am seeing but we wont do tests on that u
ntil next week. At 50mcg she was still hyperthyroid. Any words of wisdom wo
uld be appreciated. I am worried  
Norman and Susie Stretton
Nightsong Farms
Dry Creek, La
http://www.nonais.org
http://www.downsizedc.org
http://www.libertyark.net
Saanen Dairy Goats, Angora Goats, Brecknock Hill Cheviot Sheep, mohair, woo
l, crocheted items,handcrafted goat milk soap, woodwork, poultry and eggs
Messages in this topic (32)
________________________________________________________________________
2.5. Re: [Meta-mito-autism] questions
Posted by: "Leigh leighcpe" lleighcpe@... lleighcpe
Date: Sun Mar 6, 2011 4:23 pm ((PST))
If she is taking medications, you should not give any supplements/mito cock
tail from UMDF without talking to her doctors. There could be adverse react
ions. Also check if the weight gain could be due to a new medication.
--- On Sun, 3/6/11, Leigh leighcpe <lleighcpe@...> wrote:
From: Leigh leighcpe <lleighcpe@...>
Subject: Re: [Meta-mito-autism] questions
To: meta-mito-autism@yahoogroups.com, Meta-mito-autism@yahoogroups.com
Cc: mito@yahoogroups.com
Date: Sunday, March 6, 2011, 7:16 PM
 
I definitely would check her thyroid for weight gain. My son is on th
e chubby side now that he is not as sick anymore and vomiting is under cont
rol, but the weight gain was slow over time and not a quick thing.
When he had high ammonia he would be very tired, very sick looking and had
vomiting after eating. Sometimes refusing to eat and was cranky for most of
the time. He was skinny at that time.
Ask her doctor for a prescription to have the blood checked for ammonia in
the hospital (walk in) for an appropriate lab analysis. This is the only wa
y you'll know for sure if the ammonia is accurately high.
You can also put her on a diet containing less proteins, but do not elimina
te it, and supplementing with l-carnitine and ALA (follow ALA guide-lines a
t UMDF list of vitamins) might help, but not a guarantee and not a permanen
t solution. When
my son has more meat than he is supposed to have, I give him Alka-Seltzer
Gold (no aspirin), sometimes it helps but if he eats too much fat/protein,
(fried chicken) he will get vomiting about 20-30 minutes after he eats.
It seems that K is very skinny and 10 pounds is not a bad thing, so I would
not worry before hand unless if this continue to be a problem. Still needs
to ck thyroid.
It could just be that now she is feeling better after the surgery and start
ed to put some weight on, and that is a good thing, 88 pounds is low.
L
--- On Sun, 3/6/11, nightsong@... <nightsong@...> wrote:
From: nightsong@... <nightsong@...>
Subject: [Meta-mito-autism] questions
To: meta-mito-autism@yahoogroups.com
Cc: mito@yahoogroups.com
Date: Sunday, March 6, 2011,
2:23 PM
 
I am a chronic worrier so i have some questions maybe you can help me
with. Kim is usually very thin at around 88 pounds 90 on a heavy day. she
is 4foot 9 inches. In the last twelve days she has gained 10 poun
ds. She has always been a terrific eater. She eats any and everything and l
ots of it in spite of her small size. for the last month she has been on a
head banging spree. This is completely different behavior for her. yesterda
y it stopped and she is now more or less crashed. She is sleepy, quiet and
eating much less hungry  than usual. This is her usual pattern of hype
ractivity and then sleepiness.k I am concerned with the weight gain; especi
aly in light of the elevated ammonia level.The level wasnt that high (
sorry I dont know the exact level) and her liver function tests were norma
l. The blood work was done a month ago I want to call the doc in thed morni
ng and ask about the weight gain and let him know she is in
crash mode. She has not started her mito regimen yet. My question to
all of you is do you see these kind of things in your kids? Have you had weight gains and losses of more than two or three pounds in week. I
know we are stil battling her thyroid and that could be what I am seeing b
ut we wont do tests on that until next week. At 50mcg she was still hyperth
yroid. Any words of wisdom would be appreciated. I am worried �
�
Norman and Susie Stretton
Nightsong Farms
Dry Creek, La
http://www.nonais.org
http://www.downsizedc.org
http://www.libertyark.net
Saanen Dairy Goats, Angora Goats, Brecknock Hill Cheviot Sheep, mohair, woo
l, crocheted items,handcrafted goat milk soap, woodwork, poultry and eggs
Messages in this topic (32)
Please contact mito-owner@yahoogroups.com with any problems or questions.
------------------------------------------------------------------------
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#103671

From: Lee Collins <leecol211@...>
Date: Mon Mar 7, 2011 5:02 pm
Subject: Re: Digest Number 8145

leecol211

I hope things improve soon. Looks like you farm some. Does that lifestyle fit welll with Kim? I lived on an organic farm for quite a while. It worked well for me. I worked at the local regional medical center, so the farm was an awesome place to come home to.

Lee

From: "nightsong@..." <nightsong@...>
To: Mito@yahoogroups.com
Cc: meta-mito-autism@yahoogroups.com
Sent: Mon, March 7, 2011 7:43:09 AM
Subject: Re: [Mito] Digest Number 8145

-----Original Message-----
From: <Mito@yahoogroups.com>
Sent 3/7/2011 3:54:50 AM
To: Mito@yahoogroups.com
Subject: [Mito] Digest Number 8145

There are 7 messages in this issue. Topics in this digest: 1a. Scholarship for youth with Mito or child of adult with Mito From: mom2colemankidz3@... 1b. Re: Scholarship for youth with Mito or child of adult with Mito From: LNerenhausen 2.1. questions From: nightsong@... 2.2. Re: questions From: Lee Collins 2.3. Re: questions From: Veronica 2.4. Re: [Meta-mito-autism] questions From: Leigh leighcpe 2.5. Re: [Meta-mito-autism] questions From:
Leigh leighcpe Messages ________________________________________________________________________ 1a. Scholarship for youth with Mito or child of adult with Mito Posted by: "mom2colemankidz3@..." mom2colemankidz3@... heidicol eman2002 Date: Sun Mar 6, 2011 2:35 am ((PST)) It's Scholarship Application Time! I will pass along info as I receive it; most scholarships have deadlines be tween March and May for the Fall 2011 semester. This is an application for a group of about a dozen individual scholarships offered to students under age 25 who either have cancer or other life-threatening illnesses or have a parent with such an illness. Here's the link to more detailed informatio n: http://www.patientadvocate.org/index.php?p=69 Good Luck! HeidiC If you would like more information about scholarships and college planning for youth with Mito, be sure
to visit MitoAction: http://www.mitoaction.org/red-tape/transition-adulthood Messages in this topic (2) ________________________________________________________________________ 1b. Re: Scholarship for youth with Mito or child of adult with Mito Posted by: "LNerenhausen" LNerenhausen@... lisanerenhausen Date: Sun Mar 6, 2011 8:54 am ((PST)) Heidi: Went I went on line to see the scholarships they only mention if the person under 25 has the life threatening illness. There is nothing mentioned abo ut a parent having cancer. I was curious because my husband is recovering still from his cancer and with our daughter Leah with issues we have limite d income at the moment. How did you find out if it was parent with cancer that the child would qualify. Thanks for the link. Lisa Nerenhausen mom to Leah ----- Original Message ----- From:
mom2colemankidz3@... To: mitodiseasesupport@yahoogroups.com ; Mito@yahoogroups.com ; mitoldies @yahoogroups.com ; adultmito@yahoogroups.com Sent: Sunday, March 06, 2011 4:35 AM Subject: [Mito] Scholarship for youth with Mito or child of adult with Mi to It's Scholarship Application Time! I will pass along info as I receive it; most scholarships have deadlines between March and May for the Fall 2011 semester. This is an application for a group of about a dozen individual scholarships offered to students und er age 25 who either have cancer or other life-threatening illnesses or hav e a parent with such an illness. Here's the link to more detailed informat ion: http://www.patientadvocate.org/index.php?p=69 Good Luck! HeidiC If you would like more information about scholarships and college plannin g for youth with Mito, be sure to visit MitoAction:
http://www.mitoaction.org/red-tape/transition-adulthood Messages in this topic (2) ________________________________________________________________________ ________________________________________________________________________ 2.1. questions Posted by: "nightsong@..." nightsong@... norman_stretton Date: Sun Mar 6, 2011 11:23 am ((PST)) I am a chronic worrier so i have some questions maybe you can help me with. Kim is usually very thin at around 88 pounds 90 on a heavy day. she is 4fo ot 9 inches. In the last twelve days she has gained 10 pounds. Sh e has always been a terrific eater. She eats any and everything and lots of it in spite of her small size. for the last month she has been on a head b anging spree. This is completely different behavior for her. yesterday it s topped and she is now more or less crashed. She
is sleepy, quiet and eating much less hungry than usual. This is her usual pattern of hyperactiv ity and then sleepiness.k I am concerned with the weight gain; especialy in light of the elevated ammonia level.The level wasnt that high ( sorry I dont know the exact level) and her liver function tests were normal. The blood work was done a month ago I want to call the doc in thed morning and ask about the weight gain and let him know she is in crash mode. She has not started her mito regimen yet. My question to all of you is do you s ee these kind of things in your kids? Have you had weight gains and lo sses of more than two or three pounds in week. I know we are stil batt ling her thyroid and that could be what I am seeing but we wont do tests on that until next week. At 50mcg she was still hyperthyroid. Any words of wi sdom would be appreciated. I am worried Norman and Susie St retton Nightsong
Farms Dry Creek, La http://www.nonais.org http://www.downsizedc.org http://www.libertyark.net Saanen Dairy Goats, Angora Goats, Brecknock Hill Cheviot Sheep, mohair, woo l, crocheted items,handcrafted goat milk soap, woodwork, poultry and eggs Messages in this topic (32) ________________________________________________________________________ 2.2. Re: questions Posted by: "Lee Collins" leecol211@... leecol211 Date: Sun Mar 6, 2011 2:06 pm ((PST)) I would be concerned about a gain od 10 lbs in 12 days. High ammonia and th yroid problems can cause behavior changes. How old is Kim? Lee ________________________________ From: "nightsong@..." <nightsong@...> To: meta-mito-autism@yahoogroups.com Cc:
mito@yahoogroups.com Sent: Sun, March 6, 2011 11:23:10 AM Subject: [Mito] questions I am a chronic worrier so i have some questions maybe you can help me with. Kim is usually very thin at around 88 pounds 90 on a heavy day. she is 4foot 9 inches. In the last twelve days she has gained 10 pounds. She has always been a terrific eater. She eats any and everything and lots of it in spite of her small size. for the last month she has been on a head banging spree. This is completely different behavior for her. yesterday it stopped and she is now more or less crashed. She is sleepy, quiet and eating much less hungry tha n usual. This is her usual pattern of hyperactivity and then sleepiness.k I am conce rned with the weight gain; especialy in light of the elevated ammonia level.The level wasnt that high ( sorry I dont know the exact level) and her liver fun ction tests were normal. The blood work was done a
month ago I want to call the d oc in thed morning and ask about the weight gain and let him know she is in crash mode. She has not started her mito regimen yet. My question to a ll of you is do you see these kind of things in your kids? Have you had weight g ains and losses of more than two or three pounds in week. I know we are stil ba ttling her thyroid and that could be what I am seeing but we wont do tests on that unt il next week. At 50mcg she was still hyperthyroid. Any words of wisdom would be appreciated. I am worried Norman and Susie Stretton Nightsong Farms Dry Creek, La http://www.nonais.org http://www.downsizedc.org http://www.libertyark.net Saanen Dairy Goats, Angora Goats, Brecknock Hill
Cheviot Sheep, mohair, woo l, crocheted items,handcrafted goat milk soap, woodwork, poultry and eggs Messages in this topic (32) ________________________________________________________________________ 2.3. Re: questions Posted by: "Veronica" veronica197620@... veronica197620 Date: Sun Mar 6, 2011 3:25 pm ((PST)) Hello, is she retaining fluids? My son was in the hospital a couple of week s ago and his ammonia level was high and he was very sleepy the whole time we were there... *Veronica* On Mar 6, 2011, at 4:06 PM, Lee Collins <leecol211@...> wrote: I would be concerned about a gain od 10 lbs in 12 days. High ammonia and th yroid problems can cause behavior changes. How old is Kim? Lee From: "nightsong@..." <nightsong@...> To: meta-mito-autism@yahoogroups.com Cc: mito@yahoogroups.com Sent: Sun, March 6, 2011 11:23:10 AM Subject: [Mito] questions I am a chronic worrier so i have some questions
maybe you can help me with. Kim is usually very thin at around 88 pounds 90 on a heavy day. she is 4fo ot 9 inches. In the last twelve days she has gained 10 pounds. She has alwa ys been a terrific eater. She eats any and everything and lots of it in spi te of her small size. for the last month she has been on a head banging spr ee. This is completely different behavior for her. yesterday it stopped and she is now more or less crashed. She is sleepy, quiet and eating much less hungry than usual. This is her usual pattern of hyperactivity and then sl eepiness.k I am concerned with the weight gain; especialy in light of the e levated ammonia level.The level wasnt that high ( sorry I dont know the exa ct level) and her liver function tests were normal. The blood work was done a month ago I want to call the doc in thed morning and ask about the weigh t gain and let him know she is in crash mode. She has not started her mito regimen yet. My
question to all of you is do you see these kind o f things in your kids? Have you had weight gains and losses of more than tw o or three pounds in week. I know we are stil battling her thyroid and that could be what I am seeing but we wont do tests on that until next week. At 50mcg she was still hyperthyroid. Any words of wisdom would be appreciated . I am worried Norman and Susie Stretton Nightsong Farms Dry Creek, La http://www.nonais.org http://www.downsizedc.org http://www.libertyark.net Saanen Dairy Goats, Angora Goats, Brecknock Hill Cheviot Sheep, mohair, woo l, crocheted items,handcrafted goat milk soap, woodwork, poultry and eggs Messages in this topic (32) ________________________________________________________________________ 2.4. Re: [Meta-mito-autism] questions Posted by: "Leigh leighcpe" lleighcpe@... lleighcpe Date: Sun Mar 6, 2011 4:16 pm ((PST)) I definitely would check her thyroid for weight gain. My son is on the chub by side now that he is not as sick anymore and vomiting is under control, b ut the weight gain was slow over time and not a quick thing. When he had high ammonia he would be very tired, very sick looking and had vomiting after eating. Sometimes refusing to eat and was cranky for most of the time. He was skinny at that time. Ask her doctor for a prescription to have the blood checked for ammonia in the hospital (walk in) for an appropriate lab analysis. This is the only wa y you'll know for sure if the ammonia is accurately high. You can also put her on a diet containing less proteins, but do not elimina te it, and supplementing with l-carnitine and ALA (follow ALA guide-lines a t UMDF list of vitamins) might help, but not a guarantee
and not a permanen t solution. When my son has more meat than he is supposed to have, I give him Alka-Seltzer Gold (no aspirin), sometimes it helps but if he eats too mu ch fat/protein, (fried chicken) he will get vomiting about 20-30 minutes af ter he eats. It seems that K is very skinny and 10 pounds is not a bad thing, so I would not worry before hand unless if this continue to be a problem. Still needs to ck thyroid. It could just be that now she is feeling better after the surgery and start ed to put some weight on, and that is a good thing, 88 pounds is low. L --- On Sun, 3/6/11, nightsong@... <nightsong@...> wrote: From: nightsong@... <nightsong@...> Subject: [Meta-mito-autism] questions To: meta-mito-autism@yahoogroups.com Cc: mito@yahoogroups.com Date: Sunday, March 6, 2011, 2:23 PM I am a chronic worrier so i have some questions maybe you can help me with. Kim is usually very
thin at around 88 pounds 90 on a heavy day. she is 4foot 9 inches. In the last twelve days she has gained 10 poun ds. She has always been a terrific eater. She eats any and everything and l ots of it in spite of her small size. for the last month she has been on a head banging spree. This is completely different behavior for her. yesterda y it stopped and she is now more or less crashed. She is sleepy, quiet and eating much less hungry than usual. This is her usual pattern of hype ractivity and then sleepiness.k I am concerned with the weight gain; especi aly in light of the elevated ammonia level.The level wasnt that high ( sorry I dont know the exact level) and her liver function tests were norma l. The blood work was done a month ago I want to call the doc in thed morni ng and ask about the weight gain and let him know she is in crash mode . She has not started her mito regimen yet. My question to all of you is
do you see thes e kind of things in your kids? Have you had weight gains and losses of more than two or three pounds in week. I know we are stil battling he r thyroid and that could be what I am seeing but we wont do tests on that u ntil next week. At 50mcg she was still hyperthyroid. Any words of wisdom wo uld be appreciated. I am worried Norman and Susie Stretton Nightsong Farms Dry Creek, La http://www.nonais.org http://www.downsizedc.org http://www.libertyark.net Saanen Dairy Goats, Angora Goats, Brecknock Hill Cheviot Sheep, mohair, woo l, crocheted items,handcrafted goat milk soap, woodwork, poultry and eggs Messages in this topic (32) ________________________________________________________________________ 2.5. Re: [Meta-mito-autism] questions Posted by: "Leigh leighcpe" lleighcpe@... lleighcpe Date: Sun Mar 6, 2011 4:23 pm ((PST)) If she is taking medications, you should not give any supplements/mito cock tail from UMDF without talking to her doctors. There could be adverse react ions. Also check if the weight gain could be due to a new medication. --- On Sun, 3/6/11, Leigh leighcpe <lleighcpe@...> wrote: From: Leigh leighcpe <lleighcpe@...> Subject: Re: [Meta-mito-autism] questions To: meta-mito-autism@yahoogroups.com, Meta-mito-autism@yahoogroups.com Cc: mito@yahoogroups.com Date: Sunday, March 6, 2011, 7:16 PM I definitely would check her thyroid for weight gain. My son is on th e chubby side now that he is not as sick anymore and vomiting is under cont rol, but the weight gain was slow over time and not a quick thing. When he had high ammonia he would be very tired, very sick looking and had vomiting after eating. Sometimes refusing to eat and was cranky for most of the time. He was skinny at that time. Ask her doctor for a prescription to have the blood checked for ammonia in the hospital (walk in) for an appropriate lab analysis. This is the only wa y you'll know for sure if the ammonia is accurately high. You can also put her on a diet containing less proteins, but do not elimina te it, and supplementing with l-carnitine and ALA (follow ALA guide-lines a t UMDF list of vitamins) might help, but not a guarantee and not a permanen t solution. When my son has more meat than he is supposed to have, I give him Alka-Seltzer Gold (no aspirin), sometimes it helps but if he eats too much fat/protein, (fried chicken) he will get vomiting about 20-30 minutes after he eats. It seems that K is very skinny and 10 pounds is not a bad thing, so I would not worry before hand unless if this continue to be a problem. Still needs to ck
thyroid. It could just be that now she is feeling better after the surgery and start ed to put some weight on, and that is a good thing, 88 pounds is low. L --- On Sun, 3/6/11, nightsong@... <nightsong@...> wrote: From: nightsong@... <nightsong@...> Subject: [Meta-mito-autism] questions To: meta-mito-autism@yahoogroups.com Cc: mito@yahoogroups.com Date: Sunday, March 6, 2011, 2:23 PM I am a chronic worrier so i have some questions maybe you can help me with. Kim is usually very thin at around 88 pounds 90 on a heavy day. she is 4foot 9 inches. In the last twelve days she has gained 10 poun ds. She has always been a terrific eater. She eats any and everything and l ots of it in spite of her small size. for the last month she has been on a head banging spree. This is completely different behavior for her. yesterda y it stopped and she is now more or less crashed. She is sleepy,
quiet and eating much less hungry than usual. This is her usual pattern of hype ractivity and then sleepiness.k I am concerned with the weight gain; especi aly in light of the elevated ammonia level.The level wasnt that high ( sorry I dont know the exact level) and her liver function tests were norma l. The blood work was done a month ago I want to call the doc in thed morni ng and ask about the weight gain and let him know she is in crash mode. She has not started her mito regimen yet. My question to all of you is do you see these kind of things in your kids? Have you had weight gains and losses of more than two or three pounds in week. I know we are stil battling her thyroid and that could be what I am seeing b ut we wont do tests on that until next week. At 50mcg she was still hyperth yroid. Any words of wisdom would be appreciated. I am worried � � Norman and Susie Stretton Nightsong Farms Dry
Creek, La http://www.nonais.org http://www.downsizedc.org http://www.libertyark.net Saanen Dairy Goats, Angora Goats, Brecknock Hill Cheviot Sheep, mohair, woo l, crocheted items,handcrafted goat milk soap, woodwork, poultry and eggs Messages in this topic (32) Please contact mito-owner@yahoogroups.com with any problems or questions. ------------------------------------------------------------------------ Yahoo! Groups Links <*> To visit your group on the web, go to: http://groups.yahoo.com/group/Mito/ <*> Your email settings: Digest Email | Traditional <*> To change settings online go to: http://groups.yahoo.com/group/Mito/join (Yahoo! ID required) <*> To change settings via email: Mito-normal@yahoogroups.com Mito-fullfeatured@yahoogroups.com <*> To unsubscribe from this group, send an email to: Mito-unsubscribe@yahoogroups.com <*> Your use of Yahoo! Groups is subject to: http://docs.yahoo.com/info/terms/ ------------------------------------------------------------------------

#103672

From: "honeybear" <honeybear50317@...>
Date: Wed Mar 9, 2011 1:29 am
Subject: Wondering if I get all messages?

honeybear50317

I have a separate e-mail address for this group and thus I don't check
emails often, but I have noticed that I get so few messages that over a month to
two months there will only be about 10-20 messages total.  Am I getting all the
messages or is this group that inactive now?
      I remember when the group used to be so active there were tons and tons of
mesages every day....
  Any thoughts?
Darla (Asenath and Zipporrah's mommy)

#103673

From: "Erin McKenzie-Christensen" <erinmck@...>
Date: Wed Mar 9, 2011 6:42 am
Subject: Re: Wondering if I get all messages?

erinmck64

did you know that there are 3 different yahoo mito groups? mito adultmito and mitodiseasesupport? This one has the least messages of the 3 because someone made the mitodisease support i dont notice thought cause im on all three groups.

hope this helps they are all in yahoogroups

Erin

----- Original Message -----

From: honeybear

To: Mito@yahoogroups.com

Sent: Wednesday, March 09, 2011 11:59 AM

Subject: [Mito] Wondering if I get all messages?

I have a separate e-mail address for this group and thus I don't check emails often, but I have noticed that I get so few messages that over a month to two months there will only be about 10-20 messages total. Am I getting all the messages or is this group that inactive now?
I remember when the group used to be so active there were tons and tons of mesages every day....
Any thoughts?
Darla (Asenath and Zipporrah's mommy)

No virus found in this message.
Checked by AVG - www.avg.com
Version: 10.0.1204 / Virus Database: 1435/3488 - Release Date: 03/07/11

#103674

From: Thats2seven@...
Date: Wed Mar 9, 2011 11:28 am
Subject: Re: Wondering if I get all messages?

worshiponlyhim

I agree with Erica...since a lot of people went to mitodisease group because of
the added security, AND there's a lot happening via facebook, this group has
gotten much quieter.

For years, families had asked the group owner to make this group more private
and secure, since your individual messages can show up in a google search.
Finally someone just made a new, secure group. But I moderate several groups and
since the popularity of facebook, I've noticed a decrease over all!

Deb

MitoKidsRock.com
Sent from my Verizon Wireless BlackBerry

#103675

From: Lee Collins <leecol211@...>
Date: Wed Mar 9, 2011 12:14 pm
Subject: Re: Wondering if I get all messages?

leecol211

Darla,

I have also received few e-mails from this group. Not sure what's up. How is your family?

Lee

From: honeybear <honeybear50317@...>
To: Mito@yahoogroups.com
Sent: Tue, March 8, 2011 5:29:12 PM
Subject: [Mito] Wondering if I get all messages?

I have a separate e-mail address for this group and thus I don't check emails often, but I have noticed that I get so few messages that over a month to two months there will only be about 10-20 messages total. Am I getting all the messages or is this group that inactive now?
I remember when the group used to be so active there were tons and tons of mesages every day....
Any thoughts?
Darla (Asenath and Zipporrah's mommy)

#103676

From: Darla Klein <honeybear50317@...>
Date: Wed Mar 9, 2011 2:54 pm
Subject: RE: Wondering if I get all messages?

honeybear50317

We are doing well overall. The girls are not getting as frequesnt of migraines an their stroke issues have been all but gone. Still dealing with all the immune and GI stuff and of course an illness causes everything to get worse and we fight to keep them from hospital. But not as frequent of illnesses as when they were younger thankfully. Thanks for asking....

Darla

#103677

From: "LNerenhausen" <LNerenhausen@...>
Date: Wed Mar 9, 2011 3:07 pm
Subject: Re: Wondering if I get all messages?

Hey Darla:

What do you guys take for meds for your migraines. Just checking as my middle son has been getting migraines this year and has been out of school alot because of them. He takes ketorolac and suma tripan. He is also on another med for preventing them from coming on. We are starting to monitor what he is eating to see if that has an effect on him. So I like to know what others are doing to help him here. Also we are monitoring his stress level to see if that has anything to do with it even though you don't see it on his face we believe stress/anixiety is one major factor.

Thanks,

Lisa Nerenhausen

mom to Leah

----- Original Message -----

From: Darla Klein

To: Mito

Sent: Wednesday, March 09, 2011 8:54 AM

Subject: RE: [Mito] Wondering if I get all messages?

We are doing well overall. The girls are not getting as frequesnt of migraines an their stroke issues have been all but gone. Still dealing with all the immune and GI stuff and of course an illness causes everything to get worse and we fight to keep them from hospital. But not as frequent of illnesses as when they were younger thankfully. Thanks for asking....

Darla

#103678

From: Lee Collins <leecol211@...>
Date: Wed Mar 9, 2011 3:09 pm
Subject: Re: Wondering if I get all messages?

leecol211

That's wonderful news. Thank you!

Lee

From: Darla Klein <honeybear50317@...>
To: Mito <mito@yahoogroups.com>
Sent: Wed, March 9, 2011 6:54:18 AM
Subject: RE: [Mito] Wondering if I get all messages?

#103679

From: "betsygreen4" <betsygreen4@...>
Date: Thu Mar 10, 2011 6:01 pm
Subject: Re: mito magnets - for upcoming walks, awareness

betsygreen4

Lisa,

I sent you an email but I get the impression you didn't receive it. I just received a new order of magnets. How many would you like? I can send you a PayPal invoice and deliver them to you right away.

Hope you are all well,

Betsy

--- In Mito@yahoogroups.com, Lisa Higgins <lnhiggins@...> wrote:
>
> Betsy -
>
> Do you still have the mito magnets? Our walk is coming up April 30th
> - I'm interested in trying to get some to sell at the event! :)
>
> Lisa
>
> On Jul 20, 2010, at 5:22 PM, betsygreen4 wrote:
>
> > Lisa, so sorry! I just saw this. I haven't checked my mail in a long
> > time due to a hectic Spring and early Summer. How many would you
> > like? I can send you a PayPal invoice online or you can send me a
> > check. I always include an extra magnet for free.
> >
> > Hope you are well! Betsy
> >
> > --- In Mito@yahoogroups.com, Lisa Higgins lnhiggins@ wrote:
> > >
> > > I am sorry I have lost the email about the person who has the
> > > mitochondrial disease awareness car magnets - could you please email
> > > me off list at
> > >
> > > Lisa @ AllAboardForACure . com (delete the spaces)...
> > >
> > > Thanks!!!
> > >
> > > Lisa
> > >
> > > Lisa
> > > Mom to Ainsley, 4 y.o., Complex I Mitochondrial Disease, Rett
> > Syndrome
> > > dx (clinical, no genetic marker), Epilepsy, GERD, DGE, dysmotility,
> > > dysautonomia, TPN since 9/24/09
> > >
> >
> >
> >
>

Reply | Messages in this Topic (4)

#103680

From: Betsy Green <betsygreen4@...>
Date: Thu Mar 10, 2011 6:06 pm
Subject: Fw: Mito Magnet Photos

betsygreen4

Hey, everyone,

Just a reminder that I have mito magnets for walks, awareness events, or for your own family car! Send me an email with the number of magnets you'd like and I'll send you a PayPal invoice.

See the photos below!

Betsy and her kids

----- Forwarded Message ----
From: Betsy Green <betsygreen4@...>
To: mito@yahoogroups.com
Sent: Wed, February 16, 2011 4:48:35 PM
Subject: Fw: Mito Magnet Photos

Mito Magnet photos on cars

People have asked for examples of the magnets I make, so I've attached a couple of photos. One shows our friend's car, and another is of a landscaper's truck. They are among many people who support our cause by sporting the Mito Magnets on their vehicles, promoting awareness just by driving!

3 of 3 Photo(s)

IMG_0444.jpg

IMG_0450.jpg

IMG_0451.jpg

#103681

From: Darla Klein <honeybear50317@...>
Date: Thu Mar 10, 2011 6:10 pm
Subject: RE: Wondering if I get all messages?

honeybear50317

Since we also have familial hemiplegic migraine we are unable to use any vasoconstriction meds so it has limited what we can use. The girls take Topamax which covers both the migraines and seizure activity and analapril maleate (blood pressure med) as well which has really decreased their migraines. They also take 100 mg. B2 twice daily along with the Mito cocktail meds.

http://www.freewebs.com/growingupmitodisorderinfo/ Darla (ATP1A2 FHM/Mito issues)-mommy to: www.caringbridge.org/visit/asenathandzipporrahklein www.caringbridge.org/ia/mitomomof9 Asenath (11)-ATP1A2 Familial Hemiplegic Migraine (FHM) with Mitochondrial dysfunction, post CNS Vasculitis, strokes, migraines, seizures, G-tube, cyclic vomiting, dev. delays... Zipporrah (7)- ATP1A2 FHM with Mitochondrial dysfunction, strokes, migraines, seizures, G-tube, dumping syndrome, speech/cog delays...

#103682

From: "LNerenhausen" <LNerenhausen@...>
Date: Thu Mar 10, 2011 6:39 pm
Subject: Re: Wondering if I get all messages?

Thanks for your info. I may have Griffin try the B2 and see if that can help with things. Right now we are keeping a food log and even sleep log as to pin point why he has been getting these so much this year. Of course, not having a formal diagnosis on his sister, Leah; doesn't help because then in the back of my mind could he be having mito issues now or not.

Lisa Nerenhausen

mom to Leah

----- Original Message -----

From: Darla Klein

To: Mito

Sent: Thursday, March 10, 2011 12:10 PM

Subject: RE: [Mito] Wondering if I get all messages?

Since we also have familial hemiplegic migraine we are unable to use any vasoconstriction meds so it has limited what we can use. The girls take Topamax which covers both the migraines and seizure activity and analapril maleate (blood pressure med) as well which has really decreased their migraines. They also take 100 mg. B2 twice daily along with the Mito cocktail meds.

http://www.freewebs.com/growingupmitodisorderinfo/ Darla (ATP1A2 FHM/Mito issues)-mommy to: www.caringbridge.org/visit/asenathandzipporrahklein www.caringbridge.org/ia/mitomomof9 Asenath (11)-ATP1A2 Familial Hemiplegic Migraine (FHM) with Mitochondrial dysfunction, post CNS Vasculitis, strokes, migraines, seizures, G-tube, cyclic vomiting, dev. delays... Zipporrah (7)- ATP1A2 FHM with Mitochondrial dysfunction, strokes, migraines, seizures, G-tube, dumping syndrome, speech/cog delays...

#103683

From: mark schofill <tmschofill@...>
Date: Thu Mar 10, 2011 11:30 pm
Subject: carnitine levels

tmschofill

Hi everyone. Has anyone ever got back a carnitine level of 4 before? I just received my latest labs back and my carnitine was 4 with normal being over 40. My doctor was shocked as she said she has never seen that low a value before. I have been practically bedbound the last few weeks from constant fatigue and now I guess I know why. It is very dangerous to have such a low level as it can cause severe cardiac problems. My vitamin D was also very low and I was also anemic. It really explained a lot of how I have been feeling. I had stopped taking my prescription Carnitor (carnitine) but I started it back immediately.

I was just curious if anyone else out there has experienced this to this level and what problems they had with it and did they get success from supplementation?

Thanks,

Darcy

--- On Thu, 3/10/11, Darla Klein <honeybear50317@...> wrote:

From: Darla Klein <honeybear50317@...>
Subject: RE: [Mito] Wondering if I get all messages?
To: "Mito" <mito@yahoogroups.com>
Date: Thursday, March 10, 2011, 1:10 PM

Since we also have familial hemiplegic migraine we are unable to use any vasoconstriction meds so it has limited what we can use. The girls take Topamax which covers both the migraines and seizure activity and analapril maleate (blood pressure med) as well which has really decreased their migraines. They also take 100 mg. B2 twice daily along with the Mito cocktail meds.

http://www.freewebs.com/growingupmitodisorderinfo/ Darla (ATP1A2 FHM/Mito issues)-mommy to: www.caringbridge.org/visit/asenathandzipporrahklein www.caringbridge.org/ia/mitomomof9 Asenath (11)-ATP1A2 Familial Hemiplegic Migraine (FHM) with Mitochondrial dysfunction, post CNS Vasculitis, strokes, migraines, seizures, G-tube, cyclic vomiting, dev. delays... Zipporrah (7)- ATP1A2 FHM with Mitochondrial dysfunction, strokes, migraines, seizures, G-tube, dumping syndrome, speech/cog delays...

#103684

From: "Erin McKenzie-Christensen" <erinmck@...>
Date: Fri Mar 11, 2011 12:26 am
Subject: Re: Wondering if I get all messages?

erinmck64

I will have to have a look at your CB sites Darla i have one too www.caringbridge.org/visit/erinmckenziechristensen

Erin

----- Original Message -----

From: Darla Klein

To: Mito

Sent: Friday, March 11, 2011 4:40 AM

Subject: RE: [Mito] Wondering if I get all messages?

Since we also have familial hemiplegic migraine we are unable to use any vasoconstriction meds so it has limited what we can use. The girls take Topamax which covers both the migraines and seizure activity and analapril maleate (blood pressure med) as well which has really decreased their migraines. They also take 100 mg. B2 twice daily along with the Mito cocktail meds.

http://www.freewebs.com/growingupmitodisorderinfo/ Darla (ATP1A2 FHM/Mito issues)-mommy to: www.caringbridge.org/visit/asenathandzipporrahklein www.caringbridge.org/ia/mitomomof9 Asenath (11)-ATP1A2 Familial Hemiplegic Migraine (FHM) with Mitochondrial dysfunction, post CNS Vasculitis, strokes, migraines, seizures, G-tube, cyclic vomiting, dev. delays... Zipporrah (7)- ATP1A2 FHM with Mitochondrial dysfunction, strokes, migraines, seizures, G-tube, dumping syndrome, speech/cog delays...

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#103686

From: "HEATHER EVANSSMITH" <CloudRaven@...>
Date: Sat Mar 12, 2011 2:32 am
Subject: Re: Pediatric Mito Doctors in Philly Area

zoeyrainbow

My girls see Dr. Marks at st chris...he is a neurologist and does take the mitho kids.

Heather
Mommy to:
Sarina-(Hodgkin's Survivor, CP, Spina Bifidai Occulta, Scoliosis, diabetes, ASD, Raynaud's, Failure To Thrive) & Elizabeth (diabetes) (11/8/96)
Breanna- (diabetes,Epilepsy,CP, heart murmur)(10/8/01)
http://www.caringbridge.org/pa/sarina/

----- Original Message -----

From: Missy

To: Mito@yahoogroups.com

Sent: Friday, March 11, 2011 9:13 PM

Subject: [Mito] Pediatric Mito Doctors in Philly Area

Can anyone recommend a good Mito doctor in the Philly area? All of my son's specialists are at DuPont, except for GI who we see at CHOP. His GI at CHOP wants us to see one of their specialists. Any comments/suggestions for CHOP, DuPont or St. Chris would be helpful.

Thank you!

Missy

#103687

From: "Marie DiPietro" <md8senuf@...>
Date: Sat Mar 12, 2011 12:12 pm
Subject: RE: Pediatric Mito Doctors in Philly Area

md8senuf@...

Missy,

Dr. Joseph Melvin at DuPont is a wonderful doctor. He sees my kids.

Marie

From: Mito@yahoogroups.com [mailto:Mito@yahoogroups.com] On Behalf Of Missy
Sent: Friday, March 11, 2011 9:14 PM
To: Mito@yahoogroups.com
Subject: [Mito] Pediatric Mito Doctors in Philly Area

Can anyone recommend a good Mito doctor in the Philly area? All of my son's specialists are at DuPont, except for GI who we see at CHOP. His GI at CHOP wants us to see one of their specialists. Any comments/suggestions for CHOP, DuPont or St. Chris would be helpful.

Thank you!

Missy