Mito : Messages : 98726-98759 of 99647

Make a Wish is coming by this weekend to grant Jonathan a wish but we have no idea what to wish for. He cannot tell us what he would like to wish for so we're trying to help him. I have no idea what to do. We can't do a vacation because he cannot fly. We can't get a pool or swingset cause we don't have a house...he doesn't really like Disneyland or characters up close, he's afraid.....any ideas?

Melanie Zavala

View Jonathan's webist @ www.caringbridge.com/visit/jonathanzavala

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#98757

From: "jjbeck419" <jjbeck419@...>
Date: Thu Nov 12, 2009 3:41 pm
Subject: Getting the mito cocktail

jjbeck419

Online Now

Hi all.
I have been calling around to get prices on the mito cocktail.
The ubiquinol alone at our compounding pharm will be nearly $400 for one month
and anything added of course will be extra. They will not deal with ins directly
and Ava does not have a firm DX of mito so I am not sure what the policy is in
terms of coverage.
SN's Cyto Q is $225.

Ava already is on L carnitine and Solace Nutrition's multi vits.

Are there any other good alternative's ... any other reputable companies that
sell ubiquinol at a lesser cost?

How about Pure Encapsualted?
http://www.purecaps.com/PDF/pi/Mitochondria_ATP.pdf

Their mito formula is reasonably priced and we already use their products.

Does anyone have any experience with any of the mito formulas sold at Vitacost?

Thanks,

Jen

#98756

From: Lee Collins <leecol211@...>
Date: Thu Nov 12, 2009 3:09 pm
Subject: GI

leecol211

Offline

So sorry that you and Ainsley are going through all of this. What a nightmare GI issues are for so many with mito. I pray you find some answers to relieve her (and your) distress soon.

Great BIG Hugs for Health!!!

Lee

Reply | Forward | Messages in this Topic (7)

#98755

From: Lee Collins <leecol211@...>
Date: Thu Nov 12, 2009 3:04 pm
Subject: Re: Stacy and all locals!

leecol211

Offline

Hi Stacy,

I'm using a borrowed computer. I'd LOVE to meet mito families in the area. I'd love to start a group for fundraising. E-mail me @ leecol211@... or call me @ 518-764-8003.

Hope all is well with Sheldon.

Peace,

Lee

From: Stacey Fleming <flemingstace434@...>
To: Mito@yahoogroups.com
Sent: Sat, November 7, 2009 3:13:22 PM
Subject: Re: [Mito] How're you doing Amy? About Jenna!

Sorry to be reading and jumping in on your post but we live near Albany and see Dr. Adams. I LOVE Cheryl. Lee, do you live in Schenectady? ? We should meet sometime. We live in Ballston Spa and have to go to Niskayuna or Schen. occasionally. Well, when we're not in Boston Children's.

As far as I know there is no support group in the area.

--
Stacey Fleming
http://www.caringbr idge.org/ visit/sheldonf

On Sat, Nov 7, 2009 at 10:29 AM, Lee Collins <leecol211@yahoo. com> wrote:

Amy,
How are you doing? I forwarded your e-mail to Jenna. She'd be happy to exchange some ideas with you. I'll warn you that Jenna is absolutely "no non-sense" about her illness.
She was considered terminally ill at age 10 and has an incredible positive spirit. Most of her friends don't even know about the severity of her illness. They never have.
I believe the reason she's alive is about 10% what we do with supplements and diet and 90% Jenna's powerful spiritual nature.
When she was about 12 and very ill the hospital chaplain and a social worker came in to speak with us. She had not been expected to live to be 12 and if she did survive the Boston specialists assured us that she would be in a wheelchair and on a ventilator.
We ALWAYS managed to LAUGH and ENJOY ourselves; no matter what else was happening! The docs & nurses were concerned we were in denial about how seriously ill she was and not dealing with THE SITUATION appropriately. So they sent in the "troops" to help us deal with the REALITY of how GRAVE our situation was.
They asked Jenna if she ever got angry at God and wondered "why me"???
Her INDIGNANT answer shocked everyone!
She said something like:
No, why would I waste my time thinking about stupid things like that! It IS me and I can't change that by wishing it on someone else. Who should I wish it on anyway? One of your kids??? Is that what you think I should do???
I can't do that!
This is MY LIFE and I'm BUSY trying to LIVE it! I can't waste my time on things like that!
If you communicate with Jenna you should be prepared for her very powerful, positive attitude and beliefs!
Let me know how you're doing??? You can e-mail me off site @ leecol211@yahoo. com if you'd like.
Peace,
Lee

--- On Wed, 11/4/09, amy witonsky <amywitonsky@ gmail.com> wrote:

> From: amy witonsky <amywitonsky@ gmail.com>
> Subject: Re: [Mito] My story....
> To: Mito@yahoogroups. com
> Date: Wednesday, November 4, 2009, 3:50 PM
>
>
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> Lee,
>
> I would love the opportunity to email your daughter, if she
> would be interested. There aren't too many patients my
> age that I have come in contact with that have mito. Maybe
> we can exchange ideas and solutions. Does your daughter
> have a port in ? Or is she taking the medications by
> mouth? I am glad to hear that she is doing a lot better!
> That gives me some sort of hope. I did start to do a
> little better, but they believe I may now be sick with some
> kind of bug, and that is why I am in rapid decline at the
> moment.   Does the warmer climate help your daughter's
> muscles?   We were tempted to move down south before my
> diagnosis because we thought the warmer climate might
> help. I haven't really read up on climate change with
> mito, but am wondering if it would make it better or
> worse. I know i'm personally getting tired of the cold
> new york winters, and the snow!
>
>
> Amy Witonsky
>
> On Wed, Nov 4, 2009 at 8:27 AM,
> Lee Collins <leecol211@yahoo.
> com> wrote:
>
>
>
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>
>
> Amy,
>
> I live in Schenectady. My daughter is 24 and has a similar
> story to yours. She is doing amazingly well on high doses of
> the supplements and a special diet. She is living in LA
> right now.
>
> Best Wishes to You!
>
> Lee
>
>
>
> --- On Sat, 10/31/09, amy witonsky <amywitonsky@
> gmail.com> wrote:
>
>
>
> > From: amy witonsky <amywitonsky@
> gmail.com>
>
> > Subject: [Mito] My story....
>
> > To:
>
> > Date: Saturday, October 31, 2009, 10:20
> AM
>
> >
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> >
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> >
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> >
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> >
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> >
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> >
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> >
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> >
>
> > Hello Everyone,
>
> >
>
> > I wasn't really feeling well the day that I
> introduced
>
> > myself, I so couldn't write my story. I still in a
> lot
>
> > of discomfort, so I figured it may be easiest if I
> copy and
>
> > paste "my background story" from
> caringbridge.
>
> > My name is amywitonsky on the site if anyone would
> like to
>
> > visit.
>
> >
>
> >
>
> > My Story:
>
> >
>
> > y story? Where to begin......
>
> >
>
> > My mother knew that I
>
> > wasn't like any other children at a very early
> age. I
>
> > was sick more so
>
> > then other children, and I was always in pain
> throughout my
>
> > entire
>
> > body. I left school early many times, and other
> times
>
> > couldn't even go
>
> > in.
>
> >
>
> > I grew up in a small town, Monticello - which is
> really
>
> > in the middle of nowhere. Needless to say the
> doctors
>
> > there weren't
>
> > all that intelligent. My mother took me from one
> pediactric
>
> > specialist
>
> > to the next.   They would all say upon first seeing
> me
>
> > that they could
>
> > see I was in pain and they would find out what was
> wrong
>
> > with me.
>
> > Ofcourse when all the tests they did came back normal
> they
>
> > would then
>
> > tell my mother that I was seeking attention and that I
> was
>
> > not in any
>
> > discomfort. They told her to take me to a psychiatrist
> and
>
> > a therapist. My mother refused to give up though,
> taking
>
> > me from one doctor to the next.
>
> >
>
> > I
>
> > was diagnosed with a whole host of things that later
> turned
>
> > out to be
>
> > inaccurate. At 6 or 7 I can remember laying on the
> kitchen
>
> > floor unable
>
> > to physically walk to the living room couch near by.
> I
>
> > remember
>
> > collapsing and crying there in pain on the floor until
> my
>
> > sister came.
>
> > In grade school I had many accomdations - the use of
> an
>
> > elevator for example.
>
> >
>
> > Growing up with an illness is hard, but growing up
> with an
>
> > illness that people think you are faking is even
> harder.
>
> >
>
> > At
>
> > 18 I moved away from home to Albany NY to attend
> college.
>
> > I finished a
>
> > year and half of college when I had to withdraw. I
> simply
>
> > wasn't able
>
> > to work, go to school, and survive. Things got so
> bad for
>
> > me I was
>
> > unable to cook, clean, do laundry, shower, or even
> feed
>
> > myself. All of
>
> > that was such an effort, every single thing was an
> effort
>
> > and very much
>
> > painful.   I thought that Albany would hold a
> better
>
> > chance for me to
>
> > get diagnosed. I thought for sure Albany had better
>
> > doctors. The
>
> > first doctor I saw told me I had fibromyalgia without
> doing
>
> > any type of test. I was so happy to finally have an
>
> > answer. I was treated for fibromyalgia
>
> > for 5 years. I tried muscle relaxers, trigger
> point
>
> > injections,
>
> > physical therapy. Everything I did either didn't
> help
>
> > or it made it
>
> > worse.
>
> >
>
> > Right around the time I had stopped going to college
>
> > about a year later, I met my husband. We started
> dating,
>
> > and that took
>
> > my life in a very good direction. I finally had
> someone
>
> > to help me, to
>
> > understand me, to be there to advocate for me.   My
>
> > husband has been
>
> > through the worst time of my life with me, he has seen
> me
>
> > at my
>
> > lowest. He soon became tired of the answers that I
> was
>
> > receiving from
>
> > doctors- its just fibromyalgia you have to go on with
> your
>
> > life
>
> > move on with your life, realize you will be in pain
> and
>
> > deal with it.
>
> > To us that answer wasn't good enough.
>
> >
>
> > Finally at witts end I
>
> > gave up. I didn't go to see any other doctor.
> I
>
> > stopped the 26
>
> > medications I was taking on a daily basis, and only
> took
>
> > the muscle
>
> > relaxer. I felt that if I didn't do something
> soon
>
> > there would be no
>
> > hope. There was no end in sight, no answer, no cure
> no
>
> > fix.
>
> >
>
> > I
>
> > made an appointment with a genetic specialist - Dr.
> Adams
>
> > at Albany
>
> > Medical Center. When I first saw him he did the
> generic
>
> > blood &
>
> > urine screening which all came back normal, he told me
> that
>
> > if in a
>
> > year I had more symptoms I should come back. 8
> months
>
> > later I was in
>
> > the office. He suggested I may have something
> called
>
> > mitochondrial
>
> > disease, I was like what???? It all seemed pretty
> scary
>
> > to hear, but
>
> > finally at least there was a correct diagnosis in my
>
> > future. I was
>
> > scheduled for a muscle biopsy this past march, and
> the
>
> > biospy resulsts
>
> > came back positive for mitochondrial disease.
>
> >
>
> > Since
>
> > then my life has changed for the better. Putting a
> name
>
> > on something
>
> > has made a difference for me. I tried carnitine by
> mouth,
>
> > but as with
>
> > most mito patients, it made me sick - I couldn't
> absorb
>
> > it inbetween
>
> > puking and diahreah. It was suggested that I have a
> port
>
> > put in, and I
>
> > refused. Months went by and I decided it was the
> right
>
> > thing for me.
>
> > I recently had the port put in about a month ago, and
> am on
>
> > my second
>
> > week of treatment with carnitine and fatty lipids. I
> am
>
> > already
>
> > noticing such a big difference in how I am feeling,
> and how
>
> > much energy
>
> > I have. I only hope that things continue to get
> better
>
> > from here! I
>
> > can say for certain that I am lucky to be a patient of
> Dr.
>
> > Adams,
>
> > because I feel like I am in really great hands.
> Cheryl
>
> > the nurse there
>
> > is awesome, and answers all my questions, she takes
> time
>
> > out of her
>
> > busy day to call me on a regular basis, sometimes to
> just
>
> > check in and
>
> > ask me how i'm doing. I am hopeful that I am
> finally
>
> > on the right
>
> > track, and things will only improve from here.
>
> >
>
> > END
>
> >
>
> > Because my diagnosis and the treatment for my
> diagnosis is
>
> > so new to me I am looking for any and all information
> I can
>
> > sink my teeth into. I recently started the carnitine
> and
>
> > fatty lipids through a port in my chest. I do that
> monday
>
> > tuesday and wednesday then on thursday the nurse
> comes out
>
> > to take out the needle (my husband is in the process
> of
>
> > learning how to deaccess). I run my fatty lipids for
> 10-16
>
> > hours and the carnitine is now being ran over an 8
> hour
>
> > period. I am 250ml of fattylipids a day, and 10grams
> of
>
> > carnitine a day. Inbetween I also take zofran
> through iv,
>
> > and they are trying to get me to start on reglan. When
> I was
>
> > first diagnosed I tried taking the carnitine by mouth,
> but
>
> > it made me very sick. I was very scared over having
> my
>
> > port placed, and what that meant as far as a
> lifestyle
>
> > change. I am pretty on the go, independent and
> strong
>
> > willed, I really don't like having to admit that I
> need
>
> > help. Next week will be my third week doing my
> regimen,
>
> > and everyone involved in my care is amazed. By the
> second
>
> > day of the infusions I had already learned how to make
> up
>
> > and mix my medications and prepare the tubing and the
>
> > portable pumps. That was one stipulation I made of
> the
>
> > doctor. I told him that if I was not going to be
> mobile
>
> > then I wouldn't be getting the port. They
> assured me
>
> > they would get me a portable pump. I have two cad
> pumps
>
> > because they can only run one medication at a time. I
> start
>
> > running both the carnitine and fattylipids in the
> morning
>
> > and then around 8 or so I am completely done with that
> dose.
>
> > I have been told that there is room for change with
> the
>
> > carnitine and lipids. That I may start to feel so
> good
>
> > that I would only have to cut it back to one day a
> week
>
> > instead of 3. If I am feeling bad, I also have the
> option
>
> > of running those medications at a longer duration.
> My
>
> > doctor leaves the way I do the medications up to me at
> this
>
> > point. I had wanted to do the medications on a
> daily
>
> > basis, but they told me that I could start out with
> the 3
>
> > times a week first. At the point I was begging to do
> it
>
> > everyday I was in excruciating pain. Many people
> with the
>
> > port do their infusions during the night. I prefer
> to do
>
> > it in the day, I started a routine of getting up early
> in
>
> > the morning preparing the meds, and starting. I
> usually
>
> > work 4-9pm, so for me doing it in the day seemed
> easier then
>
> > having to start the medication at work. I do get
> many
>
> > stares, people have said inappropriate things to me,
> but
>
> > really it doesn't bother me. I could care less
> what
>
> > others think at this point. I actually purchased a
> rolling
>
> > bookbag at marshalls, and I just stick everything in
> there
>
> > and am on the move. When I was first diagnosed, it
> was
>
> > recommended that I try taking coq10, but the coq10 I
> had
>
> > purchased at the health food store was making me very
>
> > lightheaded and dizzy to the point that I thought I
> was
>
> > going to pass out. I live in Albany New York, and am
> being
>
> > treated by Dr. Adams at Albany Medical Center. I
> have
>
> > requested a second opinion, and they are referring
> me to
>
> > Dr. Mark Korson in Boston. I hope that they will
>
> > eventually schedule me, because I hear that Dr. Korson
> is
>
> > the guy to see when it comes to mito. My question
> for the
>
> > group is what kinds of medications are you on or have
> you
>
> > tried that seemed to help. Since starting the
> carnitine I
>
> > feel like such a new person. I have a lot more
> energy
>
> > every single muscle in my body doesn't throb with
> pain,
>
> > and I can easily do normal things like brush my hair,
> take a
>
> > shower, or take the dog for a walk. All things many
> people
>
> > take for granted, but was an extreme struggle for me
> at many
>
> > points in my life. Do any of you live in or around
>
> > Albany. I have contacted my muscular dystrophy
>
> > association, the umdf, and mitoaction, to find
> support
>
> > groups in my area. There currently is NONE.I would
> love to
>
> > have the opportunity to meet others with this
> complicated
>
> > disease.
>
> >
>
> >
>
> > I wish everyone a painfree day and a painfree night!
>
> >
>
> > Amy
>
> >
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Reply | Forward | Messages in this Topic (11)

#98754

From: KA <kalars69@...>
Date: Thu Nov 12, 2009 2:13 pm
Subject: Re: dentist

kalars69

Offline

Interesting question Susie. I had 4 impacted teeth and nightmare surgery in teens. My kids have *some* mild dental issues as well - one has late erupt first permanent at 8.5years the another child has crowded teeth.

I havn't read much about dental and Mito ~ more mention of dental with connective tissue disorders.

Kelly-Ann

#98752

From: Tracy Lengyel <tracylengyel@...>
Date: Thu Nov 12, 2009 7:31 am
Subject: RE: new and looking for some help!

tracyhope2008

Offline

Hi- I have been dealing with mito for 13 yrs now with all different ranges of severity in one family. I know that it can be impossible to completely rule out mito damage being the cause of someones symptoms. There are thousands of nuclear dna that can cause the mtdna to be damaged- most have not been found. Both me and my daughter are symptomatic- and undiagnosed accepted- but are milder and I had 2 diagnosed severely affected babies deficient in all complexes in respiratory chain. My surviving daughter has sleep apnea- severe reflux- severe mood and control issues- strange allergies- undiagnosed breathing problems-muscle weakness- and is having a horrible time during puberty- she has had no abnormal bloodwork. I am 39 and am just having abnormal labs like vitamin d deficiency- thyroid hormone too low- low blood pressure- and have muscle burning- confusion- breathing difficulties- fatigue- slight pitosis in one eye. So this isn't mito? We are common mildly affected undiagnosed mito- but know it can be disastrous instantly with crash and go from mild to severe in a second. Actually- my daughter Hope- the only one living has had mito crashes- but by the time she gets to the hospital- her vitals are normal and they say she has bad anxiety. I just had a doctor tell me that I'm not high risk so I can't get tamiflu so I informed her that has been the story of my life but I can't walk up the stairs without burning so bad and breathing so hard and no one sees it and I had to have given a metabolic disease to my babies because it either came from me or both of us being either inheritance patterns. I would never have known our symptoms are due to energy metabolism problems if I hadn't had the severely affected babies with abnormal muscle biopsies. I have a strong inclination that mine would be a waste of time and say normal so I'm not bothering. I'd still be goin to docs saying how I feel and them telling me I just need an antidepressant- which with my very sensitive metabolism- would make me more depressed because they made me gain weight. All I can do is try to build us up with supps and hope for the best- oh yeah- something is going on with my colon and kidneys- I'm aging very fast. We can't keep up with the world but we are told we can because we have no diagnosis. That's ok. I know better. S0 the world says we are healthy- but what do they know? We know as much about metabolism and the unknown as they do. Tracy

To: Mito@yahoogroups.com
From: andnowtheres2@...
Date: Wed, 4 Nov 2009 22:33:33 +0000
Subject: [Mito] new and looking for some help!

Hi Everyone!!!
Sorry this is going to be long. We live in Southeastern PA about 40 minutes from Philly. My daughter has been through the run of the mill with things. Recently she had more genetic testing done because she does have a syndrome called Noonan Syndrome and she does have Classic Autism as well. She has 2 heart defects PS & ASD, developmentally delayed, hypotonia etc. She has an abnormal EEG which we have no answers as to why. They just told us it is excessive electrical discharges happening at different times and they labeled her seizure prone. The geneticist told us: He told us the significant issue for Kylie - behavioral issues, Autism and Petit mal like seizure activity and musty-like odor(hard to describe but it's not like you dont want to be around her when she has this smell), blood sugars on the glucometer run a lil elevated and he said they are not typical in Noonan Syndrome. They did the following: She had Chromosome analysis by high resolution genome-wide SNP arrays to rule out aneuploidy
metabolic testing including:
ammonia
chemistry panel
lactate/pyruvate
Plasma amnio acids, quantitative
Plasma carnitine(total, free, acyl-carnitine)
T3
T4
TSH
Von Willebrand(had done in 2006 for her easy bruising and everything was normal but they wanted to run it again)

We got all of Ky's results back and everything came back normal despite her saying about discrepancies everything looks to be normal. Well I want to know what these "so called discrepencies" are and then to be told they are normal. I put in a request for a copy of the results for myself but I'm still waiting. The genetic counselor said they want to help find answers and that we should followup in a year or 2 as technology continues to grow. Right now I am treating my daughter as if she has hyperglycemia by making sure she has frequent meals etc. The other day I had to pick her up from school because she forgot to have something for breakfast and later in the day she became ill. I picked her up from school checked her sugars and they were high (247) she requested noodles and 2 hot dogs and she seemed alot better, took her sugars and she's down to 110. Our pediatrician hasn't been too helpful he just tells us to see one of the specialists since she is followed by so many and then he proceeded to tell me we ran testing on Kylie and everything is normal. Well, no it's not something is obviously going on with her and when they are doing her blood they aren't catching her in "crisis" mode.

I'm wondering if they have ruled out Mitochondrial or if I should find another specialist? They gave us no recommendations as to what we should do.

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#98751

From: "nikki26nzder" <mkp48@...>
Date: Thu Nov 12, 2009 7:06 am
Subject: Operations were postponed....Ace,Nissen,Bowel Biopsy...

nikki26nzder

Offline

when i posted last our son was going in for the above surgeries..
a few days leading up to the operation everyone including his school teacher we
decided he wasnt strong enough energy wise to go through it all.He went in to
the ward the day before the surgery date to have IV fluids run through to try
and give the extra boost of energy,in the morning,myself his
dad,surgeon,anaethestists decided to delay it until he is built up a bit more,he
was stuck on a new drink 2cal Hn and liquidgen oils to try and bump up his
weight (so far he is tolerating it and has put on another 1kg)...The surgeon
said he wants to operate before January,so it gives him plenty of time to get
better..Seizures were playing up big time since guy fawkes and his medications
got increased again by the doctor.As i always say we will get there,got to stay
positive eh!!! ;O)

Hope all is well with everyone take care.
Nikki and Dan.Karl(15),Sarah (5months)Jake (14)
MitoIV,CP dystonic spastic quad,both hips plated,epilepsy,spinal
mynoclonus,worsening
bowel issues (getting an ACE and NIssen done on 30th OCt),botox for
hamstrings,Mito IV,continously peg feed,Multifocal Epilpsy,recurring Kidney
Stones, saliva duct surgery, continusos feeds via mickey
Stroke,Osteopenia ,scoliosis

Reply | Forward | Messages in this Topic (1)

#98750

From: "nikki26nzder" <mkp48@...>
Date: Thu Nov 12, 2009 6:59 am
Subject: Re: dentist

nikki26nzder

Offline

Good Evening,
Our son is 14 and also in the same boat has to have a GA if xrays are to be done
or if needed any dental work..When he had ENT surgery about 5 years ago the
dentist went in as well to remove 6 baby teeth that hadnt come out the adult
teeth were there but couldnt come fully through until the baby teeth were
removed.he was due to have another xray done while in theatre but his surgeries
and bowel biospy have been postpone so when we get a new date the xray will be
done then,as he also has overgrowth on the gums,we were told the epilim he was
first on years ago can do that and now he is on phenytoin that can cause bad
overgrowth..Our son has complex IV.Our son has a lovely big smile but we notice
his top teeth the jaw sticks out more,hard to explain..And the other reason why
he has to have the xrays to is when he had a saliva retransposition surgery
unfortunately it didnt work (minimise saliva) he ended up with saliva build up
lumps under his ranula and now permanant sticky saliva which is very hard to
remove from his teeth..Our sons gums have a grainy look to which again is hard
to explain..His teeth in saying all the above are in good condition..

Hope you find more awnsers soon,
(new zealand)Nikki and Dan.Karl(15),Sarah (5months)Jake (14)
MitoIV,CP dystonic spastic quad,both hips plated,epilepsy,spinal
mynoclonus,worsening
bowel issues (getting an ACE and NIssen done on 30th OCt),botox for
hamstrings,Mito IV,continously peg feed,Multifocal Epilpsy,recurring Kidney
Stones, saliva duct surgery, continusos feeds via mickey
Stroke,Osteopenia ,scoliosis

--- In Mito@yahoogroups.com, "Norman and Susie Stretton" <nightsong@...> wrote:
>
> Kim saw a dentist this week for the first time in along time as she has to be
put to sleep for them to even look at her. He did some xrays and says she still
has some baby teeth with permanent teeth in the gums below.Kim is 31.I was not
there so I couldnt ask him this question but wondered if any of you have had
similar things with your kids. When she was a baby she did not get teeth until
she was 20 months old. Then they all came in before she was 24 months. We had
xrays done at about 18 months and the dentist as that time said her gum tissue
was "fetal" and not developed enough to push the teeth out. Is this something I
could expect with mito or the chromosome deletion? Have any of you with children
old enough to have permnanet teeth had such an experience. Could it be another
indicator of mito or is this a symptom of her chromsome deletion
>

#98749

From: Tracy Lengyel <tracylengyel@...>
Date: Thu Nov 12, 2009 6:43 am
Subject: RE: Re: Our New blog

tracyhope2008

Offline

Hi Krystena- Thank you for sharing you blog. I am on tamiflu because my husband and daughter were very sick with some virus that turned into bronchitis- probably n1h1 as it's an epidemic here now so I'm up late high on that. A side effect is inability to calm down- so I'm normally low energy- but I can't sleep tonight. Your site is tremendous in alot of ways- and I like your including your prayers in it. I will try to learn from your inspiration and remember to have fun in our anxiety. Tracy

To: Mito@yahoogroups.com
From: mcgerv@...
Date: Wed, 11 Nov 2009 12:15:05 +0000
Subject: [Mito] Re: Our New blog

Hi, I am new to the mito world and here, but wanted to tell you love your site. Your words are inspirational and your family is beautiful! Do you do photography..love all the pics!
Carrie
--- In Mito@yahoogroups.com, "momof2withga2" <momof2withga2@...> wrote:
>
> Hi guys! For those of you that realize I've been MIA for....well... a LOOOONG time, I thought I'd share with you our blog.
>
> Love,
> Krystena Richards
> Mito/GAII family
>
> http://www.babypeas.net/
>

Hotmail: Trusted email with powerful SPAM protection. Sign up now.

#98748

From: Rivera Family <riverafamilygeorgia@...>
Date: Thu Nov 12, 2009 5:50 am
Subject: Re: dentist

riverafamily...

Offline

Complex 1 that is

God Bless,

Rafael & Elicia Rivera

www.sheltersonline.com

From: Rivera Family <riverafamilygeorgia@...>
To: Mito@yahoogroups.com
Sent: Thu, November 12, 2009 12:37:23 AM
Subject: Re: [Mito] dentist

My daughter has had alot of trouble growing and loosing teeth she is comples 1 interesting. .

God Bless,

Rafael & Elicia Rivera

From: Norman and Susie Stretton <nightsong@camtel. net>
To: Mito@yahoogroups. com
Cc: Meta-mito-autism@ yahoogroups. com; chromosomedeletiono utreach@yahoogro ups.com
Sent: Wed, November 11, 2009 11:45:56 PM
Subject: [Mito] dentist

Kim saw a dentist this week for the first time in along time as she has to be put to sleep for them to even look at her. He did some xrays and says she still has some baby teeth with permanent teeth in the gums below.Kim is 31.I was not there so I couldnt ask him this question but wondered if any of you have had similar things with your kids. When she was a baby she did not get teeth until she was 20 months old. Then they all came in before she was 24 months. We had xrays done at about 18 months and the dentist as that time said her gum tissue was "fetal" and not developed enough to push the teeth out. Is this something I could expect with mito or the chromosome deletion? Have any of you with children old enough to have permnanet teeth had such an experience. Could it be another indicator of mito or is this a symptom of her chromsome deletion

#98747

From: Rivera Family <riverafamilygeorgia@...>
Date: Thu Nov 12, 2009 5:37 am
Subject: Re: dentist

riverafamily...

Offline

My daughter has had alot of trouble growing and loosing teeth she is comples 1 interesting..

God Bless,

Rafael & Elicia Rivera

From: Norman and Susie Stretton <nightsong@...>
To: Mito@yahoogroups.com
Cc: Meta-mito-autism@yahoogroups.com; chromosomedeletionoutreach@yahoogroups.com
Sent: Wed, November 11, 2009 11:45:56 PM
Subject: [Mito] dentist

#98746

From: "Norman and Susie Stretton" <nightsong@...>
Date: Thu Nov 12, 2009 4:45 am
Subject: dentist

norman_stretton

Offline

#98745

From: Rivera Family <riverafamilygeorgia@...>
Date: Thu Nov 12, 2009 2:36 am
Subject: Re: How often do you check "Seizure Medication" levels?

riverafamily...

Offline

My daughter and son are both on keppra. but this past month at their 6 month neuro visit he said that new testing for keppra levels are now being followed 1 x a yr.

God Bless,

Rafael & Elicia Rivera

From: HEATHER EVANSSMITH <CloudRaven@...>
To: Mito@yahoogroups.com
Sent: Wed, November 11, 2009 9:09:05 PM
Subject: Re: [Mito] How often do you check "Seizure Medication" levels?

Breanna is on Keppra so there is no need to test her levels.

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: Julie Medlin

To: Arizona Mito Parents ; National Mito Parents

Sent: Wednesday, November 11, 2009 8:06 PM

Subject: [Mito] How often do you check "Seizure Medication" levels?

Question to the Group~
For those who have children on seizure medication…. What is the typical protocol that you’ve experienced for having your child’s blood tested to measure adequate levels of medication? Once a month… Every other month… Only when there is a crisis (i.e. elevated seizure activity)?
Just curious how other Neurologists manage their Mito patients….
Appreciate your input….
Julie

#98744

From: "HEATHER EVANSSMITH" <CloudRaven@...>
Date: Thu Nov 12, 2009 2:09 am
Subject: Re: How often do you check "Seizure Medication" levels?

zoeyrainbow

Offline

Breanna is on Keppra so there is no need to test her levels.

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: Julie Medlin

To: Arizona Mito Parents ; National Mito Parents

Sent: Wednesday, November 11, 2009 8:06 PM

Subject: [Mito] How often do you check "Seizure Medication" levels?

Question to the Group~
For those who have children on seizure medication…. What is the typical protocol that you’ve experienced for having your child’s blood tested to measure adequate levels of medication? Once a month… Every other month… Only when there is a crisis (i.e. elevated seizure activity)?
Just curious how other Neurologists manage their Mito patients….
Appreciate your input….
Julie

#98743

From: nena1294@...
Date: Wed Nov 11, 2009 8:25 pm
Subject: Re: How often do you check "Seizure Medication" levels?

julianna1294

Offline

Here

only when there is a crisis

#98742

From: Julie Medlin <jmedlin9425@...>
Date: Thu Nov 12, 2009 1:06 am
Subject: How often do you check "Seizure Medication" levels?

jmedlin9425

Offline

Question to the Group~

For those who have children on seizure medication…. What is the typical protocol that you’ve experienced for having your child’s blood tested to measure adequate levels of medication? Once a month… Every other month… Only when there is a crisis (i.e. elevated seizure activity)?

Just curious how other Neurologists manage their Mito patients….

Appreciate your input….

Julie

#98741

From: "eithenesmom" <sjhilliard@...>
Date: Wed Nov 11, 2009 11:28 pm
Subject: Re: Ehlers Danlos

eithenesmom

Offline

Hmm ,I too thought I had heard about a connection between connective tissue
disorders and mitochondrial disease... my 3 yr old has HEDS and possible mito
(as well as a birth defect condition called VACTERL Association).

Does anyone know about the connection?

Jessica
mom to Gabriel (13 months) and Eithene Rose (3 yrs) VACTERL, EDS, possible mito
(dysautonomia, TPN dependent, chronic anemia and neutropenia, IVIG therapy, etc)

www.fromthebanksofjordan.blogspot.com

--- In Mito@yahoogroups.com, "ohgr8nowwhat" <OneSmartCooke@...> wrote:
>
> Jen -
>
> My children and I have HEDS (Hypermobile Ehlers-Danlos).  The geneticist never
said anything about the HEDS effecting mitochondria.  I have not come across
this connection in my research either.  Doesn't mean there isn't a link.  If you
find one, please share!
>
> Terry
>

Reply | Forward | Messages in this Topic (10)

#98740

From: "betsygreen4" <betsygreen4@...>
Date: Wed Nov 11, 2009 10:03 pm
Subject: Re: Mito Car Magnets - Awareness All Year ! Janelle and All

betsygreen4

Offline

Janelle,

Simply email me at betsygreen4@... with "Mito Magnets" in the subject heading and tell me how many magnets you'd like and I'll send you a PayPal invoice. Let me know if you live internationally (where) as this affects pricing, shipping, timing, etc. We include an extra free magnet with every order, too! I'll send a separate email to this group with the magnet as an attachment so that you can "see" what it looks like.

The magnet itself says "Support MITOCHONDRIAL Research, Medicine, Education" and is of heavy material that endures the elements quite well! It won't mark your car like a sticker might, either, and clearly gets the point across. Great as a gift or for high visibility vehicles! For more information see below.

Warm regards, Betsy
--- In Mito@yahoogroups.com, Betsy Green <betsygreen4@...> wrote:
>
> Hello, everyone!
>
> I've just received a new shipment of car magnets and wanted to let you all know
> (see attached). It's crucial that we promote awareness. Please help support
> mitochondrial research, medicine, and education for the sake of our loved ones.
>
> They make fantastic gifts, stocking stuffers, Thanksgiving goodies, thank you
> presents, etc. Do you know of anyone who owns a high-visibility vehicle (truck,
> bus, landscaper's pickup, dry cleaner's van, taxi, pizza delivery, etc.)? Another
> great way to promote awareness all year long!
>
> If you are interested in obtaining a magnet, please contact me with the "Mito
> Magnet" in the Subject heading and I will send you a PayPal invoice. The first
> magnet is free (you pay only shipping and handling), and subsequent magnets
> are $4.00 a piece.
>
> Thanks for working together as a team, everyone, and please pass this along,
>
> Betsy and her kids
>

#98739

From: "emhboo" <eanizer@...>
Date: Wed Nov 11, 2009 5:26 pm
Subject: Re: postings appearing outside of this group

emhboo

Offline

Hi there. Welcome to cyber world. :)

If you use a particular name and google it you will find it if it's original
enough... I found this out too when I was on cafemom... I had a very unique user
name and everything I ever posted was available archived on the internet. The
only way to get rid of it, is to delete everything you have ever posted and use
a very generic name... like for me... when I found that out, I switched my
"user" name to Snooze. Way too many Snooze hits.... google Eanizer@... and
I bet you will find even this response :)

Susan

--- In Mito@yahoogroups.com, "luna2day" <samestaleshoes@...> wrote:
>
>
>  Hi! I have noticed this as well. I learned this by googling my name (before I
joined facebook), & some of my posts to this group  popped up. I think it is
because the archives to this list are public, so anybody browsing this group can
read the archives. I wouldn't worry too much, I have never had any problems & I
have been a member here since 2000.
>
> Kristine, Chelsea's mom, 12, atypical Rett Syndrome(FKA nonspecific mito)
>
>
> --- In Mito@yahoogroups.com, A Chapman <amandajchapman@> wrote:
> >
> > i don't know if this has been discussed before, but i just googled my email
and guess what... several of the posts that i have been involved with in this
group showed up.
> > �
> > is there anyway to stop this, get the posts pulled?
> > �
> > �
> >
>

#98738

From: Jennnifer Gawalek <jgawalek@...>
Date: Wed Nov 11, 2009 4:37 pm
Subject: multiple ostomy issues/Cindy/Thank you!

jgawalek

Offline

Hi all! Thank you so very much indeed for the advice and support regarding Ms. Megan's ileostomy issues. I'm so glad I posted because I got several great ideas and now I feel better. I did contact several manufacturers yesterday to ask for samples, and there are several more on my list for today. Hopefully....?

Cindy -- I would love your extras! Even if I don't have the matching "parts", it would cut down on what I need to order on top of what my insurance is paying for. Thank you thank you! I am also more than willing to pay you for them and/or reimburse shipping. Just let me know. My address is:

Jennifer Gawalek

W149 N8114 Winchester Dr.

Menomonee Falls, WI 53051

Jen and Meggers

www.caringbridge.org/visit/megangawalek

--- On Tue, 11/10/09, luna2day <samestaleshoes@...> wrote:

From: luna2day <samestaleshoes@...>
Subject: [Mito] Re: postings appearing outside of this group
To: Mito@yahoogroups.com
Date: Tuesday, November 10, 2009, 8:34 PM

Hi! I have noticed this as well. I learned this by googling my name (before I joined facebook), & some of my posts to this group popped up. I think it is because the archives to this list are public, so anybody browsing this group can read the archives. I wouldn't worry too much, I have never had any problems & I have been a member here since 2000.

Kristine, Chelsea's mom, 12, atypical Rett Syndrome(FKA nonspecific mito)

--- In Mito@yahoogroups. com, A Chapman <amandajchapman@ ...> wrote:
>
> i don't know if this has been discussed before, but i just googled my email and guess what... several of the posts that i have been involved with in this group showed up.
>
> is there anyway to stop this, get the posts pulled?
>
>
>

#98736

From: sei1126@...
Date: Wed Nov 11, 2009 3:49 pm
Subject: Re: Re: Mito Car Magnets - Awareness All Year Long!

sei1126@...

I missed it, how do I order magnets?  Please reply.
Thank you
Janelle McGuire

-----Original Message-----
From: betsygreen4 <betsygreen4@...>
To: Mito@yahoogroups.com
Sent: Tue, Nov 10, 2009 12:27 pm
Subject: [Mito] Re: Mito Car Magnets - Awareness All Year Long!
































To all of those who've emailed me internationally, yes I can send them

internationally, I just need to calculate the postage and handling each

time at the post office.  And of course, please feel free to forward

this email.  Betsy



--- In Mito@yahoogroups.com, Betsy Green <betsygreen4@...> wrote:

>

> Hello, everyone!

>

> I've just received a new shipment of car magnets and wanted to let you

all know

> (see attached).  It's crucial that we promote awareness.   Please help

support

> mitochondrial research, medicine, and education for the sake of our

loved ones.

>

> They make fantastic gifts, stocking stuffers, Thanksgiving goodies,

thank you

> presents, etc.  Do you know of anyone who owns a high-visibility

vehicle (truck,

> bus, landscaper's pickup, dry cleaner's van, taxi, pizza delivery,

etc.)?  Another

> great way to promote awareness all year long!

>

> If you are interested in obtaining a magnet, please contact me with

the "Mito

> Magnet" in the Subject heading and I will send you a PayPal invoice.

The first

> magnet is free (you pay only shipping and handling), and subsequent

magnets

> are $4.00 a piece.

>

> Thanks for working together as a team, everyone, and please pass this

along,

>

> Betsy and her kids

>

#98735

From: KA <kalars69@...>
Date: Wed Nov 11, 2009 2:43 pm
Subject: Re: emg/ncs - Thanks

kalars69

Offline

Good to hear that went well and no issues with nerves. No, this doesn't rule out mito - confirms there is no problem in "communication network" of brain, nerves and muscles. And possibly muscles don't have issue with undertanding or doing the "nerve's requested action". What the muscles can DO with the information. Did the Doc/tech say kids had myopathy results?

Hope you can have a movie day on the couch! Sounds like that's about the kids speed-Mom could use a respite moment, anyway!

Kelly-Ann

Reply | Forward | Messages in this Topic (2)

#98734

From: Suzanne Heaton <suzie.m.heaton@...>
Date: Wed Nov 11, 2009 12:27 pm
Subject: emg/ncs - Thanks

sheaton_ozemail

Offline

Thanks all for the support for the nerve conduction study and EMG for the kids.� They did really well at the tests and we even managed to pop in for fasting bloods that had been ordered.� Got to say the lead up, and Ellie's anxiety, were a bigger problem than the actual tests.� While there was lots of fiddling around, the actual testing parts were just minutes.� Both kids got normal results, which I assume doesn't rule mito out.

That said, the EMG was painful.� However, unlike adults I've heard about they only did testing on the right leg (realised afterwards that it's left side that Will gets weakness and that might have been better but it's done now.

After the test, when we went back to the motel to clear out the room, Ellie fell into bed and stayed there for an hour.� We would have been much better staying another night but it just didn't work out for a few reasons.� Both children have gone downhill health wise since the test.� Will had today off school (Ellie's been off all term) and I expect him off again tomorrow.� Ellie's back on antibiotics and Will starts again tomorrow after I get to the chemist.

My test is still to come.� I think I might plan to get someone to drive me the 2 hours home.

cheers
Suzie

Reply | Forward | Messages in this Topic (2)

#98733

From: "mcgerv" <mcgerv@...>
Date: Wed Nov 11, 2009 12:15 pm
Subject: Re: Our New blog

mcgerv

Offline

Hi, I am new to the mito world and here, but wanted to tell you love your site.
Your words are inspirational and your family is beautiful! Do you do
photography..love all the pics!
Carrie
--- In Mito@yahoogroups.com, "momof2withga2" <momof2withga2@...> wrote:
>
> Hi guys! For those of you that realize I've been MIA for....well... a LOOOONG
time, I thought I'd share with you our blog.
>
> Love,
> Krystena Richards
> Mito/GAII family
>
> http://www.babypeas.net/
>

#98732

From: KAFoley2@...
Date: Wed Nov 11, 2009 12:43 am
Subject: Re: Re: postings appearing outside of this group

KAFoley2@...

That is why I sort of mostly stopped writing as someone years ago at
son's school was looking up what I wrote.
If I recall right this  is a public list.  Some lists are not.
Kathy

-----Original Message-----
From: Lisa Higgins <lnhiggins@...>
To: Mito@yahoogroups.com
Sent: Tue, Nov 10, 2009 3:46 pm
Subject: Re: [Mito] Re: postings appearing outside of this group

The only thing I know of is that you can go in and delete your own
posts and the TPN group I am on is totally closed- which means that you
cannot search the archives at all - the only way to be a part of their
yahoo group is to get the emails or digest delivered - so none of the
posts are public in any way.. but that would prevent anyone on or off
the group from searching posts.. 

Lisa
mom to Ainsley, 4 yo, Complex I OXPHOS

Lisa Higgins
Event Coordinator

Third Annual All Aboard for a Cure - 
  One Mile Walk & Family Fun Day
To Benefit the United Mitochondrial Disease  Foundation
Saturday, April 24, 2010
Historic Norcross, Georgia
Lisa@...
www.AllAboardForACure.com

On Nov 10, 2009, at 3:34 PM, luna2day wrote:

Hi! I have noticed this as well. I learned this by googling my name
(before I joined facebook), & some of my posts to this group popped up.
I think it is because the archives to this list are public, so anybody
browsing this group can read the archives. I wouldn't worry too much, I
have never had any problems & I have been a member here since 2000. 

Kristine, Chelsea's mom, 12, atypical Rett Syndrome(FKA nonspecific
mito)

--- In Mito@yahoogroups.com, A Chapman <amandajchapman@...> wrote:
>
> i don't know if this has been discussed before, but i just googled my
email and guess what... several of the posts that i have been involved
with in this group showed up.
>  
> is there anyway to stop this, get the posts pulled?
>  
>  
>

#98731

From: Gina Blair <mom2twoinaz@...>
Date: Tue Nov 10, 2009 10:31 pm
Subject: OT: Maclearen sstroller recall -possible finger amputation!!!

mom2twoinaz

Offline

I know some of you use these strollers because they support bigger kids, so please be careful!

http://www.cnn. com/2009/ BUSINESS/ 11/10/stroller. recall.maclaren/ index.html

(CNN) -- Close to one million strollers have been recalled by their manufacturer following reports at least 12 babies or toddlers had their fingers amputated after they were caught in the hinges.

British company Maclaren said the recall concerns Chinese-made models on sale in the U.S. that open with an "umbrella" mechanism.

The U.S. Consumer Product Safety Commission said customers should stop using the strollers immediately.

Maclaren said it was issuing a free repair kit make the hinges safe.

The CPSC said the warning concerned models dating back to 1999 sold at stores including Target and Babies R Us.

The mechanism "poses a fingertip amputation and laceration hazard to the child when the consumer is unfolding," the CPSC said in statement issued jointly with Maclaren.

Maclaren said its Volo, Triumph, Quest Sport, Quest Mod, Techno XT, Techno XLR, Twin Triumph, Twin Techno and Easy Traveller models -- which retail between $100 to $400 -- were affected.

The manufacturer said its strollers met required safety standards, but the recall was being applied voluntarily to "alert the operator when opening or closing the stroller of the possible risk of injury."

In a separate statement, Maclaren's European arm said that no recall was being issued in the European Union, where there had been fewer reported injuries, despite higher sales.

"We wish to reassure our customers that they should continue to use their existing Maclaren buggies since they are safe when opened and closed correctly," it said.

"Our advice is that consumers should take the same level of caution and care as when opening or closing a car door or any other moving part that can be found in many other baby and toddler products.

"There are a lower number of similar reported incidents amongst the considerably higher number of Maclaren buggies sold in Europe. If a buggy is folded or unfolded in line with our operating instructions the risk of injury is non-existent. "

• U.S. consumers can contact Maclaren at 877-688-2326 or visit www.maclaren. us/recall to receive the repair kit.

Reply | Forward | Messages in this Topic (1)

#98730

From: Lisa Higgins <lnhiggins@...>
Date: Tue Nov 10, 2009 8:46 pm
Subject: Re: Re: postings appearing outside of this group

lnhiggins

Offline

The only thing I know of is that you can go in and delete your own posts and the TPN group I am on is totally closed- which means that you cannot search the archives at all - the only way to be a part of their yahoo group is to get the emails or digest delivered - so none of the posts are public in any way.. but that would prevent anyone on or off the group from searching posts..

Lisa

mom to Ainsley, 4 yo, Complex I OXPHOS

Lisa Higgins

Event Coordinator

Third Annual All Aboard for a Cure -

One Mile Walk & Family Fun Day

To Benefit the United Mitochondrial Disease Foundation

Saturday, April 24, 2010

Historic Norcross, Georgia

Lisa@...

www.AllAboardForACure.com

On Nov 10, 2009, at 3:34 PM, luna2day wrote:

Hi! I have noticed this as well. I learned this by googling my name (before I joined facebook), & some of my posts to this group popped up. I think it is because the archives to this list are public, so anybody browsing this group can read the archives. I wouldn't worry too much, I have never had any problems & I have been a member here since 2000.

Kristine, Chelsea's mom, 12, atypical Rett Syndrome(FKA nonspecific mito)

--- In Mito@yahoogroups.com, A Chapman <amandajchapman@...> wrote:
>
> i don't know if this has been discussed before, but i just googled my email and guess what... several of the posts that i have been involved with in this group showed up.
>
> is there anyway to stop this, get the posts pulled?
>
>
>

#98729

From: "luna2day" <samestaleshoes@...>
Date: Tue Nov 10, 2009 8:34 pm
Subject: Re: postings appearing outside of this group

luna2day

Offline

Hi! I have noticed this as well. I learned this by googling my name (before I
joined facebook), & some of my posts to this group  popped up. I think it is
because the archives to this list are public, so anybody browsing this group can
read the archives. I wouldn't worry too much, I have never had any problems & I
have been a member here since 2000.

Kristine, Chelsea's mom, 12, atypical Rett Syndrome(FKA nonspecific mito)

--- In Mito@yahoogroups.com, A Chapman <amandajchapman@...> wrote:
>
> i don't know if this has been discussed before, but i just googled my email
and guess what... several of the posts that i have been involved with in this
group showed up.
> �
> is there anyway to stop this, get the posts pulled?
> �
> �
>

#98728

From: "betsygreen4" <betsygreen4@...>
Date: Tue Nov 10, 2009 6:27 pm
Subject: Re: Mito Car Magnets - Awareness All Year Long!

betsygreen4

Offline

To all of those who've emailed me internationally, yes I can send them
internationally, I just need to calculate the postage and handling each
time at the post office.  And of course, please feel free to forward
this email.  Betsy


--- In Mito@yahoogroups.com, Betsy Green <betsygreen4@...> wrote:
>
> Hello, everyone!
>
> I've just received a new shipment of car magnets and wanted to let you
all know
> (see attached).  It's crucial that we promote awareness.   Please help
support
> mitochondrial research, medicine, and education for the sake of our
loved ones.
>
> They make fantastic gifts, stocking stuffers, Thanksgiving goodies,
thank you
> presents, etc.  Do you know of anyone who owns a high-visibility
vehicle (truck,
> bus, landscaper's pickup, dry cleaner's van, taxi, pizza delivery,
etc.)?  Another
> great way to promote awareness all year long!
>
> If you are interested in obtaining a magnet, please contact me with
the "Mito
> Magnet" in the Subject heading and I will send you a PayPal invoice.
The first
> magnet is free (you pay only shipping and handling), and subsequent
magnets
> are $4.00 a piece.
>
> Thanks for working together as a team, everyone, and please pass this
along,
>
> Betsy and her kids
>

#98726

From: "momof2withga2" <momof2withga2@...>
Date: Tue Nov 10, 2009 2:57 pm
Subject: PATTIE CURRAN - WHAT THE..... :)

momof2withga2

Offline

WHAT THE.... HEY PATTIE!!! BOY HAVE I BEEN "OFF THE SCENE" FAR TOO LONG!
PLEEEEEASE fill me in when you can.
I ALWAYS THOUGHT YOUR BOYS HAVE MITO. I think I have sent you some info over the
years??
Anyway, I look forward to hearing from you. Call me sometime if you'd like. If
you dont' have my number, email me and I'll send it to you aggain.

Krystena
krystena@...

http://www.babypeas.net/





--- In Mito@yahoogroups.com, "Pattie Curran" <catholicmomof3@...> wrote:
>
> We are new to the Mito scene, too.  I have two boys who have been diagnosed
> with Shwachman-Diamond Syndrome.  You can *meet* my family on our family
> website: www.shwachman.50megs.com <http://www.shwachman.50megs.com/>
> Both have extra issues that docs thought were odd and in addition to SDS.
> Well.. my youngest has a neurogenic bladder (we cath every 4 hrs0 and he has
> developed swallowing problems.    In our search for answers to these  extra
> things, Mito came up.  Our doctor wanted to do a muscle biopsy and referred
> us to Dr. S in Atlanta-we go there next week for the muscle biopsy..   His
> lactate levels were normal, but Pyruvate was slightly elevated.   I was kind
> of bummed when Dr. S got back to us and said w should come for the biopsy-I
> was hoping we were barking up the wrong tree-the other doc sent a referral
> letter and his records, and I sent records.. Dr. S then went over them and
> they contacted us to schedule.
>
>
>
> Anyway, I don't have much to offer since we are new!  Just wanted to say
> hello!
>
>
>
> Peace be with you,
>
> Pattie (mom to two boys with Shwachman-Diamond Syndrome)
>
> Help raise Shwachman-Diamond Syndrome Awareness, join the SDA cause on
> Facebook:  <BLOCKED::http://www.causes.com/shwachmandiamondamerica>
> www.causes.com/shwachmandiamondamerica
>
>   _____
>
> From: Mito@yahoogroups.com [mailto:Mito@yahoogroups.com] On Behalf Of
> Katiebear
> Sent: Wednesday, November 04, 2009 5:34 PM
> To: Mito@yahoogroups.com
> Subject: [Mito] new and looking for some help!
>
>
>
>
>
> Hi Everyone!!!
> Sorry this is going to be long. We live in Southeastern PA about 40 minutes
> from Philly. My daughter has been through the run of the mill with things.
> Recently she had more genetic testing done because she does have a syndrome
> called Noonan Syndrome and she does have Classic Autism as well. She has 2
> heart defects PS & ASD, developmentally delayed, hypotonia etc. She has an
> abnormal EEG which we have no answers as to why. They just told us it is
> excessive electrical discharges happening at different times and they
> labeled her seizure prone. The geneticist told us: He told us the
> significant issue for Kylie - behavioral issues, Autism and Petit mal like
> seizure activity and musty-like odor(hard to describe but it's not like you
> dont want to be around her when she has this smell), blood sugars on the
> glucometer run a lil elevated and he said they are not typical in Noonan
> Syndrome. They did the following: She had Chromosome analysis by high
> resolution genome-wide SNP arrays to rule out aneuploidy
> metabolic testing including:
> ammonia
> chemistry panel
> lactate/pyruvate
> Plasma amnio acids, quantitative
> Plasma carnitine(total, free, acyl-carnitine)
> T3
> T4
> TSH
> Von Willebrand(had done in 2006 for her easy bruising and everything was
> normal but they wanted to run it again)
>
> We got all of Ky's results back and everything came back normal despite her
> saying about discrepancies everything looks to be normal. Well I want to
> know what these "so called discrepencies" are and then to be told they are
> normal. I put in a request for a copy of the results for myself but I'm
> still waiting. The genetic counselor said they want to help find answers and
> that we should followup in a year or 2 as technology continues to grow.
> Right now I am treating my daughter as if she has hyperglycemia by making
> sure she has frequent meals etc. The other day I had to pick her up from
> school because she forgot to have something for breakfast and later in the
> day she became ill. I picked her up from school checked her sugars and they
> were high (247) she requested noodles and 2 hot dogs and she seemed alot
> better, took her sugars and she's down to 110. Our pediatrician hasn't been
> too helpful he just tells us to see one of the specialists since she is
> followed by so many and then he proceeded to tell me we ran testing on Kylie
> and everything is normal. Well, no it's not something is obviously going on
> with her and when they are doing her blood they aren't catching her in
> "crisis" mode.
>
> I'm wondering if they have ruled out Mitochondrial or if I should find
> another specialist? They gave us no recommendations as to what we should do.
>