New

[Guest guest]

Hello and Welcome to the group.I wish you all the best.And don't let

anyone scare are worry you about having surgery as you can read if

the surgery you need I think you be happy after its done and the

weight just comes off.I had Surgery Aug.18,2003 in Sioux falls,South

Dakota and started out weighting 379 and now so far down to 266.That

113 lbs and Willing to do it all over if I had to.The surgery is God

Gift to us whom can't seem to do it before.Congraduation and hope to

hear your date.Your Prayers are with me as your just starting to

start a New Wonderful Life.a friend debkroll of Iowa.113 gone

forever.Take one day at a time and step at a

time.

>

> Hello,

>

>

> My name is I am 30 years old and I am excited to be in

this

> group.

> I am getting all the info I can, I really want to have this surgery

done.

>

> Looking forward to meeting you all.

>

> hugs,

> steph

>

>

> God Bless,

> Blair

> http://www.angelfire.com/ky2/hiya/letter/kj/poem.html

[Guest guest]

welcome to the group, patty. feel free to ask specific ?s.

lori h.

21 grateful months post-op

> I am looking for info on the lap RNY I have been approved by my

> insurance and have a surgery date would like all the info I can get

> thanks

> Patty

[Guest guest]

welcome to the group, patty. feel free to ask specific ?s.

lori h.

21 grateful months post-op

> I am looking for info on the lap RNY I have been approved by my

> insurance and have a surgery date would like all the info I can get

> thanks

> Patty

[Guest guest]

Dear Amy,

I have 2 girls. Samya died at age 9 of

Leigh’s in December 2002 and Leanna just turned 7. She also has it. All

of your feelings and story are very familiar. I can even relate to the blaming

the child, being tired of the disease and the excaustion. Only, the difference

is I was mad at myself and my girls for having something but never knowing what

it was until Samya’s death. There were times when I thought that I must

be crazy and it must all be in my mind since the doctors could not find

anything. Believe me, I had many doctors think that. I do not want to overwhelm

you at once with information. If you visit my daughter’s website, you can

see both Samya and Leanna, read my story (The long version) and learn as much

as you can. I hope it will be a help. Do they have an actual mutation

pinpointed and if so which one? I know this is so overwhelming, devastating and

UNFAIR . You have every right to be angry. We all are, but eventually you will

learn to adjust and how to deal with it. I won’t say, “accept”

because I don’t think I will ever accept what I have been dealt in life,

I will never ever like it, but I try to make the best out of it. I pray for

wisdom and guidance for your journey. Feel free to vent anytime, No one will

ever understand you more than us parents.

Suhad Haddad -- Mom to Samya (Died 12-10-02 of Leigh's Synd.) &

Leanna with same disease.

Samya's Memorial Site: www.Samya.org

Email:

Suhad1970@...

Alt Email:

Suhad@...

AiM Chat: Suhad1970

From: amyrd29

Sent: Friday, May 14, 2004 10:49

PM

To: Mito

Subject: New

Hi! I am so glad that I found this group. I have been dealing with

so many unknowns for 8 months. My daughter is

still not diagnosed.

But after saying she had one disease and accepting

it, now they are

pretty sure that it is Leigh's disease. I am

waiting for the

muscle/skin biopsy results. But I have so many

questions... She

doesn't seem to be degenerating as the disease

states, so I don't

know. I've only been checking out this group for a

week or so, but

have noticed that a few of you have children with

this disease and I

guess I just wanted to get more information that

is real life, not

text book. I have no idea what to expect in

regards to my daughter,

Lily's extent of development. Let me explain...

I'll try to make the

long story short!!! She was basically a 'normally'

developing child

until 1 years old. Although she didn't learn to

crawl until 11

months. Right after her b-day, she got the flu

real bad(1st time),

but she also got her MMR shot (to blame??!).

Within 2-3 weeks she

had regressed back to a newborn state. No head

control, couldn't

even sit, or roll over, floppy, screaming bloody

murder, and lost

control of right arm/hand. Had 3 MRI's should

white matter in the

basil ganglia. Dr's refused to tell me whether it

was permanent

brain damage or anything. What is it? MRS showed

those high levels

of whatever which made them think metabolic.

Plenty of tests, no

diagnosis. They first thought it was

3-methylglutaconic aciduria.

Now, no. They think it's Leigh's disease. They had

put her on 3ml of

Carnitor 3x a day. That is it. Nothing else. She

is now 20 months

old. Currently, she eats fairly well although I do

feed her

Pediasure and carnation instant breakfast daily.

She is still using

a bottle, but not a sippy. She can hold her head

up again, and can

roll over. Plus, she can push herself up on her

hands/elbows, and

she is gaining control of her right hand! She

cannot sit on her own

yet. So, that is my story. Sorry it is so long, but

I have so many

questions and does this sound familiar to anyone,

and if so can you

give me any hope on if she'll ever be able to sit,

crawl, or even

walk? And lastly, this is terrible, but I am now

going through the

anger stage again and putting it towards Lily. I

love her put I hate

the problem and blame her. I hate myself for it,

but sometimes I

just don't want to deal with it. Any advice? Okay,

I'm done

rambling! Thanks for your help!

Amy

mother of Lilyann 20 months; suspected Leigh's

and Austin

4 years; don't think he has it...

Please

contact mito-owner with any problems or questions.

[Guest guest]

I am glad you found the group. It has been a lifeline for me. I

want you to know that I also felt resentment towards my more severely

affected son. At 20 months old he woke up from a nap a different

boy -I felt like I had lost my son and his twin lost his best

friend. At that point the docs told me that a virus had changed him.

All my hopes and expectations were shattered. I felt like I had

lost a child--he was so different. I had to learn to love him again--

lots of guilt about that. After tons of therapy he is our old Cole

again. No one can prepare us for an experience like that. We are

only human and mito is a lot to cope with. I also often blame myself

for not getting my boys to the doc who diagnosed them sooner--I

listened to the docs when I should not have. Mito disease is so

tough on the kids--but it is also a strain on the people that love

them. Your feelings are normal for your situation.

Proper treatment for their disorder has done wonders for my boys.

They are way better than they were last summer -we have our ups and

downs, but I am no longer convinced that this disease is going to

destroy them.

God Bless, and strength to you and your family.

Kris

> Hi! I am so glad that I found this group. I have been dealing with

> so many unknowns for 8 months. My daughter is still not diagnosed.

> But after saying she had one disease and accepting it, now they are

> pretty sure that it is Leigh's disease. I am waiting for the

> muscle/skin biopsy results. But I have so many questions... She

> doesn't seem to be degenerating as the disease states, so I don't

> know. I've only been checking out this group for a week or so, but

> have noticed that a few of you have children with this disease and

I

> guess I just wanted to get more information that is real life, not

> text book. I have no idea what to expect in regards to my daughter,

> Lily's extent of development. Let me explain... I'll try to make

the

> long story short!!! She was basically a 'normally' developing child

> until 1 years old. Although she didn't learn to crawl until 11

> months. Right after her b-day, she got the flu real bad(1st time),

> but she also got her MMR shot (to blame??!). Within 2-3 weeks she

> had regressed back to a newborn state. No head control, couldn't

> even sit, or roll over, floppy, screaming bloody murder, and lost

> control of right arm/hand. Had 3 MRI's should white matter in the

> basil ganglia. Dr's refused to tell me whether it was permanent

> brain damage or anything. What is it? MRS showed those high levels

> of whatever which made them think metabolic. Plenty of tests, no

> diagnosis. They first thought it was 3-methylglutaconic aciduria.

> Now, no. They think it's Leigh's disease. They had put her on 3ml

of

> Carnitor 3x a day. That is it. Nothing else. She is now 20 months

> old. Currently, she eats fairly well although I do feed her

> Pediasure and carnation instant breakfast daily. She is still using

> a bottle, but not a sippy. She can hold her head up again, and can

> roll over. Plus, she can push herself up on her hands/elbows, and

> she is gaining control of her right hand! She cannot sit on her own

> yet. So, that is my story. Sorry it is so long, but I have so many

> questions and does this sound familiar to anyone, and if so can you

> give me any hope on if she'll ever be able to sit, crawl, or even

> walk? And lastly, this is terrible, but I am now going through the

> anger stage again and putting it towards Lily. I love her put I

hate

> the problem and blame her. I hate myself for it, but sometimes I

> just don't want to deal with it. Any advice? Okay, I'm done

> rambling! Thanks for your help!

>

> Amy

> mother of Lilyann 20 months; suspected Leigh's

> and Austin 4 years; don't think he has it...

[Guest guest]

Welcome. I hope u find as much support and information as I have here. It's

always sad when someone new has to join. My son has mito myopathy

unspecified. we are going for further testing on tuesday. So god luck to u

and I hope u find many answers here.

mom to Caeden 2 regression with mito

>

>Reply-To: Mito

>To: Mito

>Subject: New

>Date: Sat, 15 May 2004 05:48:56 -0000

>

>Hi! I am so glad that I found this group. I have been dealing with

>so many unknowns for 8 months. My daughter is still not diagnosed.

>But after saying she had one disease and accepting it, now they are

>pretty sure that it is Leigh's disease. I am waiting for the

>muscle/skin biopsy results. But I have so many questions... She

>doesn't seem to be degenerating as the disease states, so I don't

>know. I've only been checking out this group for a week or so, but

>have noticed that a few of you have children with this disease and I

>guess I just wanted to get more information that is real life, not

>text book. I have no idea what to expect in regards to my daughter,

>Lily's extent of development. Let me explain... I'll try to make the

>long story short!!! She was basically a 'normally' developing child

>until 1 years old. Although she didn't learn to crawl until 11

>months. Right after her b-day, she got the flu real bad(1st time),

>but she also got her MMR shot (to blame??!). Within 2-3 weeks she

>had regressed back to a newborn state. No head control, couldn't

>even sit, or roll over, floppy, screaming bloody murder, and lost

>control of right arm/hand. Had 3 MRI's should white matter in the

>basil ganglia. Dr's refused to tell me whether it was permanent

>brain damage or anything. What is it? MRS showed those high levels

>of whatever which made them think metabolic. Plenty of tests, no

>diagnosis. They first thought it was 3-methylglutaconic aciduria.

>Now, no. They think it's Leigh's disease. They had put her on 3ml of

>Carnitor 3x a day. That is it. Nothing else. She is now 20 months

>old. Currently, she eats fairly well although I do feed her

>Pediasure and carnation instant breakfast daily. She is still using

>a bottle, but not a sippy. She can hold her head up again, and can

>roll over. Plus, she can push herself up on her hands/elbows, and

>she is gaining control of her right hand! She cannot sit on her own

>yet. So, that is my story. Sorry it is so long, but I have so many

>questions and does this sound familiar to anyone, and if so can you

>give me any hope on if she'll ever be able to sit, crawl, or even

>walk? And lastly, this is terrible, but I am now going through the

>anger stage again and putting it towards Lily. I love her put I hate

>the problem and blame her. I hate myself for it, but sometimes I

>just don't want to deal with it. Any advice? Okay, I'm done

>rambling! Thanks for your help!

>

>Amy

>mother of Lilyann 20 months; suspected Leigh's

>and Austin 4 years; don't think he has it...

>

>

_________________________________________________________________

Stop worrying about overloading your inbox - get MSN Hotmail Extra Storage!

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[Guest guest]

Hi Amy:

I have three children. Two healthy boys and one little girl. Her name is

Leah and she just turned 6 on April 29th. She has always been suspected of

having Leighs disease because of some white matter they found on her MRI

scan. Leah was born with a cleft palate but we noticed that she was

developing in milestones like other children but weren't too worried about

it. At about 6 months of age she developed a sort of high fever, about 103

degrees. That sort of started our ball rolling in that something wasn't

right. I was babysitting and my husband was watching Leah and took her to

our doctor. He thought it was just a virus but after a couple of days he

listened to our fears and did some phone calling. So he got the ball rolling

for us in the right direction. Anyway, Leah can now just sit up for about 5

minutes at a time. She can now finally use a cup with more control and

trying to feed herself with a spoon. She can't crawl, even though she gets

in to position sometimes and tries. Her arms won't support her. She can

stand with us holding on to her. she still takes a bottle some times during

the day and to go to bed at night and in the morning. She is still being

tested. They have sort of ruled out GAII but need to do a few more tests.

She goes to early preschool and will be going to Kindergarten next school

year. The one thing we are going to be very cautious with is viruses in the

classroom. Leah is going from a class size of 9 to a class size of very

mobile 24 kids. We do the best we can with illness in our household but take

Leah to church, shopping, swimming, we expose her to as much as possible and

never give up. Our ped. is very good in that he never questions us when we

bring Leah or the boys in because of a minor illness. We have been blessed

with a good doctor who listens to us as parents. It can take a while for

acceptance, but cheer the achievements your child succeeds at, no matter how

small they are. Her brothers treat their sister as " normal. " They play with

her and teach others about Leah. We have regular teenage babysitters take

care of the kids. With this disease each child is so different. Leah does

not have seizures, can eat regular food, drink almost anything. We give her

rice milk to control her protein intake abit and try to watch her fat

intake. She is still in diapers but is slowly learning to use the potty

chair and darn good at it, too. Ask questions of this group, learn, educate

not yourself but others. Good luck and it is nice meeting you.

Nerenhausen

mom to Leah, , and

amyrd29 wrote:

> Hi! I am so glad that I found this group. I have been dealing with

> so many unknowns for 8 months. My daughter is still not diagnosed.

> But after saying she had one disease and accepting it, now they are

> pretty sure that it is Leigh's disease. I am waiting for the

> muscle/skin biopsy results. But I have so many questions... She

> doesn't seem to be degenerating as the disease states, so I don't

> know. I've only been checking out this group for a week or so, but

> have noticed that a few of you have children with this disease and I

> guess I just wanted to get more information that is real life, not

> text book. I have no idea what to expect in regards to my daughter,

> Lily's extent of development. Let me explain... I'll try to make the

> long story short!!! She was basically a 'normally' developing child

> until 1 years old. Although she didn't learn to crawl until 11

> months. Right after her b-day, she got the flu real bad(1st time),

> but she also got her MMR shot (to blame??!). Within 2-3 weeks she

> had regressed back to a newborn state. No head control, couldn't

> even sit, or roll over, floppy, screaming bloody murder, and lost

> control of right arm/hand. Had 3 MRI's should white matter in the

> basil ganglia. Dr's refused to tell me whether it was permanent

> brain damage or anything. What is it? MRS showed those high levels

> of whatever which made them think metabolic. Plenty of tests, no

> diagnosis. They first thought it was 3-methylglutaconic aciduria.

> Now, no. They think it's Leigh's disease. They had put her on 3ml of

> Carnitor 3x a day. That is it. Nothing else. She is now 20 months

> old. Currently, she eats fairly well although I do feed her

> Pediasure and carnation instant breakfast daily. She is still using

> a bottle, but not a sippy. She can hold her head up again, and can

> roll over. Plus, she can push herself up on her hands/elbows, and

> she is gaining control of her right hand! She cannot sit on her own

> yet. So, that is my story. Sorry it is so long, but I have so many

> questions and does this sound familiar to anyone, and if so can you

> give me any hope on if she'll ever be able to sit, crawl, or even

> walk? And lastly, this is terrible, but I am now going through the

> anger stage again and putting it towards Lily. I love her put I hate

> the problem and blame her. I hate myself for it, but sometimes I

> just don't want to deal with it. Any advice? Okay, I'm done

> rambling! Thanks for your help!

>

> Amy

> mother of Lilyann 20 months; suspected Leigh's

> and Austin 4 years; don't think he has it...

>

> Please contact mito-owner with any problems or questions.

>

[Guest guest]

Hi Amy,

Welcome to this group. I hope that you will find support and information to help you with Lily's disease. My daughter is almost 1 year old and also has suspected Leigh's Disease. Her skin biopsy came back normal and she is having a muscle biopsy on Wednesday. We have found it difficult to know what to expect with this disease because it affects children so differently.

If I can give you any advice, it is to make sure you are dealing with knowledgeable doctors who are willing to explain and teach you about Lily's suspected disease, and the treatment. The doctors that we see have not had much experience with this disease, but are doing EVERYTHING they can to make our daughter and us comfortable. My daughter did not experience a significant improvement while on the mito cocktail (Carnitor, and a number of others), but many others here feel it has saved there child's life. I would make sure that Lily is receiving all of the vitamins/supplements that others have found a improvement with.

I know some of the other members have mentioned there are some great centers/doctors with expertise in mito disorders. If you consider getting a new doc, just post where you live and someone will give you a referral.

Here is my daughter Kira's Website which explains our journey with this disease.

http://members.shaw.ca/kirasday/

Good luck and Welcome,

Jen

-----Original Message-----From: amyrd29 Sent: Friday, May 14, 2004 11:49 PMTo: Mito Subject: NewHi! I am so glad that I found this group. I have been dealing with so many unknowns for 8 months. My daughter is still not diagnosed. But after saying she had one disease and accepting it, now they are pretty sure that it is Leigh's disease. I am waiting for the muscle/skin biopsy results. But I have so many questions... She doesn't seem to be degenerating as the disease states, so I don't know. I've only been checking out this group for a week or so, but have noticed that a few of you have children with this disease and I guess I just wanted to get more information that is real life, not text book. I have no idea what to expect in regards to my daughter, Lily's extent of development. Let me explain... I'll try to make the long story short!!! She was basically a 'normally' developing child until 1 years old. Although she didn't learn to crawl until 11 months. Right after her b-day, she got the flu real bad(1st time), but she also got her MMR shot (to blame??!). Within 2-3 weeks she had regressed back to a newborn state. No head control, couldn't even sit, or roll over, floppy, screaming bloody murder, and lost control of right arm/hand. Had 3 MRI's should white matter in the basil ganglia. Dr's refused to tell me whether it was permanent brain damage or anything. What is it? MRS showed those high levels of whatever which made them think metabolic. Plenty of tests, no diagnosis. They first thought it was 3-methylglutaconic aciduria. Now, no. They think it's Leigh's disease. They had put her on 3ml of Carnitor 3x a day. That is it. Nothing else. She is now 20 months old. Currently, she eats fairly well although I do feed her Pediasure and carnation instant breakfast daily. She is still using a bottle, but not a sippy. She can hold her head up again, and can roll over. Plus, she can push herself up on her hands/elbows, and she is gaining control of her right hand! She cannot sit on her own yet. So, that is my story. Sorry it is so long, but I have so many questions and does this sound familiar to anyone, and if so can you give me any hope on if she'll ever be able to sit, crawl, or even walk? And lastly, this is terrible, but I am now going through the anger stage again and putting it towards Lily. I love her put I hate the problem and blame her. I hate myself for it, but sometimes I just don't want to deal with it. Any advice? Okay, I'm done rambling! Thanks for your help! Amymother of Lilyann 20 months; suspected Leigh's and Austin 4 years; don't think he has it...Please contact mito-owner with any problems or questions.

[Guest guest]

AMy,

First of all, congratulations on the birth of your sweet baby girl. SEcond, WELCOME! This is a great place to vent, get advice, and just feel like you are NOT the only one on the planet living this crazy thing called mito.

My daughter Lexi is 6 now. The docs said she would not live to see one. So having said that, my point is that every child with mito progresses differently and it's very frustrating and even scary to compare them to each other. You are best off to compare Lily to LILY and call it good, if that makes any sense.

WE don't have the Dx of Leighs, so i'm not much help there. But you are most definately in the right spot for asking Q's and getting real life experience answers.

Hope this helps

ruth

mom to Mitch (9) and Lexi (6), both mito affected and my treasures

[Guest guest]

First welcome to the group. It is not nice seeing someone else having to come here, but everyone here is so supportive and very helpful. I will do my best to answer as many questions I can for you. I am also sure you will get many others responding.

Yes, you should ask for a fresh muscle biopsy. I only know of three places where these are done, Cleveland Clinic (this is where we go), Mayo Clinic, and Shriners Hospital in Atlanta.

Caden's story sounds very familiar to my daughter, Grace. Her first symptoms included the same newborn low blood sugar and jaunduce. She later developed severe reflux and many feeding problems (she was totally breastfed at the time). She now has a very extensive medical history, but all her problems seem to be in control with medication at the current time.

Grace does have mito (although non specific) and can walk, jump and dance age appropriatly. She does have times where her skills drop, but she has always regained them. Please remember all these kids are different and have all different symptoms and problems of there own.

I guess for the meantime, be carefull of viruses and stresses. If he does have mito, they can be extremely dangerous. My daughter just went through two months of regression from a virus we did not even know she had.

We cope everyday, by watching her smile and laugh. We have learned how precious life is and hold each day sacred. We have gotten so used to medications and her needs that now they are just normal for our family. (She has two older sisters and a brother, and myself and husband).

You should consult a geneticist first, before you have more children, just to be safe. They need to figure out how your child was affected. It can be maternally inherited from the mother (wich gives you 50% chance all your kids will have it.) Or it can be neuclear inherited from both parents (gives you a 1 in 4 chance of a recurrance). I have even heard that sometimes it is related to a total fluke.

As I mentioned before we have three older children than our mito kid, who are perfectly healthy. Granted we were both married before and Grace is our first together. We did not go to a geneticist, but we are expecting a little boy in Sept. and have strong faith that he will be just fine, (we were given the one in four chance of it happening again).

I hope I have helped you at least a little. I am sure you will get many responces, and everyone here are really great people who know so much I am amazed. Best wishes.

[Guest guest]

> Vicki & ,

First of all, welcome. Sorry you have to be here, but glad you

found this group! Secondly, remember not to get ahead of yourslef to

far. Looking to far down the road may scare you when we all try to

go one day at a time. It is soooo hard to do that, I know! the doc

said it could be anything right? Maybe it isn't mito. I think alot

of us ended at mito by exclusion of a hundred other things. The

hardest part of mito is not knowing what the future may bring. Two

children with the exact same thing can present in completely

different ways. Doc's cannot tell you how long or anything. Not

because they won't, they really can't. Will he roll, walk or talk?

Maybe in his own time. I think with therapy, meds, treatment etc. he

may. Can you pass it to another child? Possibly. They may be able to

tell more with DNA tests. It really is so scary. Read enough, but

don't get consumed by it. Really try to take it as it comes. I know

there are others who went down this road and found out it wasn't

mito. there are those who may never know for sure (test can be

inconclusive).

This is a great group and very knowledgable and caring. Again,

welcome aboard!

>

Dawn

[Guest guest]

Hi Vicky,

I too have an 8-month-old baby boy and their backgrounds sound very

similar. My guy, , was also severly jaundiced and hospitalized

for high bilirubin. He was diagnosed early with low tone in his

trunk and neck (he has since developed some high tone in his legs),

reflux, and failure to thrive. He was constantly dehydrated and

struggling to eat, so after several hospitalizations, he got a G-tube

at 4 months. At that time, our primary concern was his feeding

problems, but his neurologist thought it might be a good time to take

a muscle biopsy since he was having surgery for the G-tube placement

anyway. The biopsy came back six weeks ago with a diagnosis of a

complex I defect as well as a fatty acid oxidation disorder.

also has had normal MRIs and a normal MRS, as well as normal blood

tests (no elevated pyruvate or lactate--this, I am told, is very

possible). So we had essentially no other signs that he had mito

other than the muscle biopsy. also had a floppy head and just

began playing with toys recently. He held his head up at 5 months,

and is beginning to learn to roll. We're working on sitting, but

it's a long process and we aren't very close yet. He gets PT twice a

week and speech once a week. Like Caden, he looks like a totally

normal Gerber baby.

I highly suggest you seek a muscle biopsy as part of Caden's work-

up. It IS an invasive surgery, but you can gain very valuable

information and it can either rule things out or give other clues to

what may be going on with Caden. I have heard it can also give a

false negative, but I know many mito specialists take the clinical

picture into consideration in those cases. I wish I could help you

more with your questions, but I'm afraid I am in the same boat as far

as the question of more children, how to cope, and what the future

will hold. We have a healthy two-year-old daughter. Some days I can

take it day by day and am fine, but other days are not so good. I

have heard this is all part of the " journey " .

Good luck to you! You're doing a great job--

Whitney

mom to --mito complex I/fatty acid oxidation disorder

> Hello everyone! I have been lurking for about a week or so just

> reading up on what you all go through with mito dosorders. Let me

> introduce myself.....My name is Vicki and I am the mother to a

> beautiful 7 mo. old boy named Caden. He was 2 days over due and I

> was induced. He weighed 8 lbs. 3 oz and was 21 in. long. When

> Caden was born, his low blood sugar kept us in the hospital for an

> extra day or 2, then his jaundice reared it's ugly head. After we

> were finallly released to go home after 6 days in the hospital, we

> were home for 2 days where Caden threw up everything he took in.

We

> were re-admitted that Friday and were flown to another, bigger

> hospital on Monday. It was there that his 2nd upper GI showed

> severe reflux. He was put on 3 meds: reglan, bethanichol, and

> zantac and they seeme d to control the reflux enough for us to go

> home. When Caden was about 3 months old, we noticed he wasn't

doing

> some of the things that other babies born just days before him were

> doing, such as tracking with his eyes, attempting to hold his head

> up, look at toys or grab for them, and so on. We went in to our

ped

> with our concerns and he referred us to our rehab center for PT and

> OT. We go twice a week. It was here that they told us that Caden

> had low muscle tone. I have a friend who's daughter has low tone,

> so I didn't concern myself too much with it. He also referred us

to

> a ped. opthamologist. When the optha. looked into Caden's eyes,

> they were perfectly normal, so he should have been seeing fine. He

> thought maybe it was just slow development. Then we saw a

> geneticist. She saw nothing wrong with Caden, told us his low tone

> was only in his neck and trunk, and took blood for a chromo. study,

> which came back normal. Caden had passed his newborn screening for

> his ears with each ear at different times, so the rehab center

> wanted him to pass an ABR hearing test which went miserably because

> he woke up screaming with reflux in the middle of it. He later had

> an EDG and ph probe done to measure his reflux and correlate his

> reflux with his screaming. They did another ABR while he was out

> and he failed again. His ph probe showed mild reflux now and the

> probe showed he wasn't refluxing when he was crying and vice

versa.

> We then went to an ENT who put tubes in Caden's ears because he had

> a 20-30% hearing loss due to fluid in his ears from the reflux.

> This helped his hearing tremendously! The second tme we saw the

> opthamologist, he seemed to think, as we did, that Caden's eyes

were

> getting better. He then told us that he wanted to know what the

> neurologist had to say about Caden. Now, we are at 7 mos. and 1

> week old and Caden still can't hold up his head and we are no where

> near sitting. We saw the neurologist on May 4. We went in

thinking

> Caden might have CP, but were still hopeful because he had a normal

> CT scan and EEG performed earlier...about 4 months old. Wehad

> thought he was having seizures at one time, but the tests came back

> normal and we haven't seen the behavior again. The neurologist

> dropped a bomb on our world. I can't remember much of the appt.

> after he said something was wrong with Caden's brain, but my

husband

> said he mentioned Mitochondrial disorders. He ordered an MRI/MRS

> which we had done this past Wednesday and should get the results

> from today. He was looking for encephalopathy (?) and basil

ganglia

> lactose in his brain. Does this sound familiar to anyone? He is

> basing his observations on the facts that: 1. Caden's low tone, 2.

> His inability to communicate with the world, and 3. His constant

> movement. Caden coo's all the time, but he can't reach out and

grab

> for things he wants and so on. The neuro said based on those 3

> things, that it could be a long list of things and he wouldn't give

> us any names of anything. Caden is the most beautiful baby we have

> ever seen. (an unbiased opinion!) He looks perfectly normal when

> you see him. Besides his reflux, he really hasn't been sick at

> all. He eats great and always has. He has the most beautiful

smile

> you have ever seen. He is our first child and the first grandchild

> on my side of the family. You can imagine how spoiled he is!! He

> has all these toys that he can't play with. We know he can see

> light, because he always turns towards it and he laughs at shadows

> that pass his face and loves peek-a-boo. I look back now and

wonder

> about all the screaming that we thought was reflux pain and I

wonder

> if that was really what it was. The neuro. gave us best case

> scenario is Caden being able to take care of himself one day and

> worse case scenario is " shortened life expectancy. " took

> that as to be 30 yrs old, I took it to be MUCH less. Of course

> after we saw the neuro, we went home and started researching mito

> dosorders and found some info we wished we hadn't had to read and

my

> husband decided my interpretation of shortened life expectancy was

> more accurate.

>

> Well that is our story....now I have a few questions. Any info

> would be greatly appreciated. If Caden has a mito disorder, what

do

> I need to ask for next? Is a muscle biopsy the next step? I know

> we need to be able to have it done fresh, not frozen if so. Does

> Caden's story sound familiar to any of you? Does it sound like

> mito? If Caden can't hold his head up yet, can I ever expect him

to

> be able to?? What about sitting, walking?? Do I need to be doing

> something different for him now, in the mean time?? What else do

we

> need to know?? How do you cope day to day? Did I give this to my

> son? Will I ever be able to have more children? Will they have

> mito also?? HELP please! I appreciate you all reading my long

post

> and any info you can give us.

>

> Vicki &

> Caden: 10/08/03 Reflux, laryngomalacia, low tone, possible vision

> impaired, possible mito disorder..Our wonderful " noodle " !!

[Guest guest]

Like Caden my son cried non stop the first 5 months of his life. He

cried from 8:00 am to 8:00 pm with no naps, just crying. Wyatt also

had severe reflux and a twisted intestine. He had surgery at 4

months to correct it. Like Caden my son's head,neck and trunk are

floppy but his legs are tight. Because of his mixed muscle tone we

started to go down the road of mito. We spent 4 1/2 years searching

for an answer to Wyatt's problems. Finally after an illness, blood

tests began to show up abnormal. We had a skin biopsy that stated he

had Complex I. We just had a muscle biopsy in January and that came

back normal. So no idea if one of them was a false positive or the

other was a false negative. At the same time of the muscle biopsy we

had an MRI/MRS done that came back normal. So bottom line I

understand your frustration and feeling like you are back to square

one again. I have been dealing with misdiagnosis and normal results

for 5 years now. How do I do it? I realize I have no control over

the outcome of tests. I also realize that modern medicine really

isn't that modern.

Wyatt is 5 and is able to hold his head up about 75-80% of the time.

He is just learning to roll over completely, but only one way. He

can not crawl, sit, walk, or talk. I always dreamed of having a son

play hockey. I couldn't wait to teach him how to skate. Now 5 years

latter I have learned to dream new dreams (by the way I would highly

recommend reading that book- Learning to Dream New Dreams) I could

careless if my son ever walks or sits, but what I could never live

without is seeing that smile on his face everyday and knowing that he

feels secure. In the big picture I believe the only thing that

really matters at the end is that I unconditionally loved my child

and he loved me.

As far as other children, we have twin daughters who are not

affected. I hope some of this helps. Keep posting your questions

this is a wonderful group. Welcome and sorry you have a reason to be

here.

Geri-Anne and Wyatt, Complex I, , Dina and Bianca, age 3

> Hello everyone! I have been lurking for about a week or so just

> reading up on what you all go through with mito dosorders. Let me

> introduce myself.....My name is Vicki and I am the mother to a

> beautiful 7 mo. old boy named Caden. He was 2 days over due and I

> was induced. He weighed 8 lbs. 3 oz and was 21 in. long. When

> Caden was born, his low blood sugar kept us in the hospital for an

> extra day or 2, then his jaundice reared it's ugly head. After we

> were finallly released to go home after 6 days in the hospital, we

> were home for 2 days where Caden threw up everything he took in.

We

> were re-admitted that Friday and were flown to another, bigger

> hospital on Monday. It was there that his 2nd upper GI showed

> severe reflux. He was put on 3 meds: reglan, bethanichol, and

> zantac and they seeme d to control the reflux enough for us to go

> home. When Caden was about 3 months old, we noticed he wasn't

doing

> some of the things that other babies born just days before him were

> doing, such as tracking with his eyes, attempting to hold his head

> up, look at toys or grab for them, and so on. We went in to our

ped

> with our concerns and he referred us to our rehab center for PT and

> OT. We go twice a week. It was here that they told us that Caden

> had low muscle tone. I have a friend who's daughter has low tone,

> so I didn't concern myself too much with it. He also referred us

to

> a ped. opthamologist. When the optha. looked into Caden's eyes,

> they were perfectly normal, so he should have been seeing fine. He

> thought maybe it was just slow development. Then we saw a

> geneticist. She saw nothing wrong with Caden, told us his low tone

> was only in his neck and trunk, and took blood for a chromo. study,

> which came back normal. Caden had passed his newborn screening for

> his ears with each ear at different times, so the rehab center

> wanted him to pass an ABR hearing test which went miserably because

> he woke up screaming with reflux in the middle of it. He later had

> an EDG and ph probe done to measure his reflux and correlate his

> reflux with his screaming. They did another ABR while he was out

> and he failed again. His ph probe showed mild reflux now and the

> probe showed he wasn't refluxing when he was crying and vice

versa.

> We then went to an ENT who put tubes in Caden's ears because he had

> a 20-30% hearing loss due to fluid in his ears from the reflux.

> This helped his hearing tremendously! The second tme we saw the

> opthamologist, he seemed to think, as we did, that Caden's eyes

were

> getting better. He then told us that he wanted to know what the

> neurologist had to say about Caden. Now, we are at 7 mos. and 1

> week old and Caden still can't hold up his head and we are no where

> near sitting. We saw the neurologist on May 4. We went in

thinking

> Caden might have CP, but were still hopeful because he had a normal

> CT scan and EEG performed earlier...about 4 months old. Wehad

> thought he was having seizures at one time, but the tests came back

> normal and we haven't seen the behavior again. The neurologist

> dropped a bomb on our world. I can't remember much of the appt.

> after he said something was wrong with Caden's brain, but my

husband

> said he mentioned Mitochondrial disorders. He ordered an MRI/MRS

> which we had done this past Wednesday and should get the results

> from today. He was looking for encephalopathy (?) and basil

ganglia

> lactose in his brain. Does this sound familiar to anyone? He is

> basing his observations on the facts that: 1. Caden's low tone, 2.

> His inability to communicate with the world, and 3. His constant

> movement. Caden coo's all the time, but he can't reach out and

grab

> for things he wants and so on. The neuro said based on those 3

> things, that it could be a long list of things and he wouldn't give

> us any names of anything. Caden is the most beautiful baby we have

> ever seen. (an unbiased opinion!) He looks perfectly normal when

> you see him. Besides his reflux, he really hasn't been sick at

> all. He eats great and always has. He has the most beautiful

smile

> you have ever seen. He is our first child and the first grandchild

> on my side of the family. You can imagine how spoiled he is!! He

> has all these toys that he can't play with. We know he can see

> light, because he always turns towards it and he laughs at shadows

> that pass his face and loves peek-a-boo. I look back now and

wonder

> about all the screaming that we thought was reflux pain and I

wonder

> if that was really what it was. The neuro. gave us best case

> scenario is Caden being able to take care of himself one day and

> worse case scenario is " shortened life expectancy. " took

> that as to be 30 yrs old, I took it to be MUCH less. Of course

> after we saw the neuro, we went home and started researching mito

> dosorders and found some info we wished we hadn't had to read and

my

> husband decided my interpretation of shortened life expectancy was

> more accurate.

>

> Well that is our story....now I have a few questions. Any info

> would be greatly appreciated. If Caden has a mito disorder, what

do

> I need to ask for next? Is a muscle biopsy the next step? I know

> we need to be able to have it done fresh, not frozen if so. Does

> Caden's story sound familiar to any of you? Does it sound like

> mito? If Caden can't hold his head up yet, can I ever expect him

to

> be able to?? What about sitting, walking?? Do I need to be doing

> something different for him now, in the mean time?? What else do

we

> need to know?? How do you cope day to day? Did I give this to my

> son? Will I ever be able to have more children? Will they have

> mito also?? HELP please! I appreciate you all reading my long

post

> and any info you can give us.

>

> Vicki &

> Caden: 10/08/03 Reflux, laryngomalacia, low tone, possible vision

> impaired, possible mito disorder..Our wonderful " noodle " !!

[Guest guest]

I have a 7 month old (in two days)that has many similarities in

the infancy as well. My daughter, Zipporrah, had horrible jaundice

until she was 6 1/2 weeks old (never treated as the docs wouldn't

listen to me and didn't want to see her personally!!!)and she finally

got better when she had RSV and was totally dehydrated. This caused

a stroke episode and in turn caused her left side to not work. Since

that time, she had another stroke episode effecting her right side,

feeding issues leading to a g-tube, labs indicating Mito, MRI/MRS

normal (you can have strokes without showing damage in the brain-

believe it or not), trachea issues, etc. She has regained much of

her two stroke episodes thankfully and actually has been amazing us

recently with her gains. Our children are amazing and can surprise

us. Your child may suddenly start making gains or may take years to

progress, but I have seen how the moms in this group take such joy in

the little gains. We all treasure every little accomplishment! We

did have a muscle/skin biopsy done at the time of the G-tube

placement and are awaiting the results, probably in June or July. We

also have a four year old who has Mito, unspecified type (so we are

hoping for more help from Zipporrah's biopsies), and she has shown a

pattern of strokes with viruses as Zipporrah has. She didn't show

problems until she was about 8 months though and we didn't know what

the problem was with her until she was almost 3 years of age. She

has damage in her brain showing in her MRI's due to a major stroke in

April of 2002 and has 4 narrow arteries in her brain, now believed to

be totally Mito related (unsure how-caused CNS Vasculitis), but her

MRS still looks normal. She is at a 2-2 1/2 year level in all areas

so is delayed, but is amazing with her history. Besides these two,

we have five biological children (some affected mildly-others healthy

at this point)and have two adopted children. Believe me, we take one

day at a time, sometimes one moment at a time, and cherish every

moment. Nobody knows what the future holds for even our healthy

children and I feel sorry for all the parents in the world who can't

wait to be free from their kids. Boy are they missing out! We all

have our days where we are overwhelmed and get upset about what cards

we have been dealt, but there are the good days as well where we see

the treasures we have been allowed and entrusted to raise. I hope

you find the answers you seek for your child. Welcome to the group!

Darla: mommy to Asenath, Zipporrah, and the gang

> > Hello everyone! I have been lurking for about a week or so just

> > reading up on what you all go through with mito dosorders. Let

me

> > introduce myself.....My name is Vicki and I am the mother to a

> > beautiful 7 mo. old boy named Caden. He was 2 days over due and

I

> > was induced. He weighed 8 lbs. 3 oz and was 21 in. long. When

> > Caden was born, his low blood sugar kept us in the hospital for

an

> > extra day or 2, then his jaundice reared it's ugly head. After

we

> > were finallly released to go home after 6 days in the hospital,

we

> > were home for 2 days where Caden threw up everything he took in.

> We

> > were re-admitted that Friday and were flown to another, bigger

> > hospital on Monday. It was there that his 2nd upper GI showed

> > severe reflux. He was put on 3 meds: reglan, bethanichol, and

> > zantac and they seeme d to control the reflux enough for us to go

> > home. When Caden was about 3 months old, we noticed he wasn't

> doing

> > some of the things that other babies born just days before him

were

> > doing, such as tracking with his eyes, attempting to hold his

head

> > up, look at toys or grab for them, and so on. We went in to our

> ped

> > with our concerns and he referred us to our rehab center for PT

and

> > OT. We go twice a week. It was here that they told us that

Caden

> > had low muscle tone. I have a friend who's daughter has low

tone,

> > so I didn't concern myself too much with it. He also referred us

> to

> > a ped. opthamologist. When the optha. looked into Caden's eyes,

> > they were perfectly normal, so he should have been seeing fine.

He

> > thought maybe it was just slow development. Then we saw a

> > geneticist. She saw nothing wrong with Caden, told us his low

tone

> > was only in his neck and trunk, and took blood for a chromo.

study,

> > which came back normal. Caden had passed his newborn screening

for

> > his ears with each ear at different times, so the rehab center

> > wanted him to pass an ABR hearing test which went miserably

because

> > he woke up screaming with reflux in the middle of it. He later

had

> > an EDG and ph probe done to measure his reflux and correlate his

> > reflux with his screaming. They did another ABR while he was out

> > and he failed again. His ph probe showed mild reflux now and the

> > probe showed he wasn't refluxing when he was crying and vice

> versa.

> > We then went to an ENT who put tubes in Caden's ears because he

had

> > a 20-30% hearing loss due to fluid in his ears from the reflux.

> > This helped his hearing tremendously! The second tme we saw the

> > opthamologist, he seemed to think, as we did, that Caden's eyes

> were

> > getting better. He then told us that he wanted to know what the

> > neurologist had to say about Caden. Now, we are at 7 mos. and 1

> > week old and Caden still can't hold up his head and we are no

where

> > near sitting. We saw the neurologist on May 4. We went in

> thinking

> > Caden might have CP, but were still hopeful because he had a

normal

> > CT scan and EEG performed earlier...about 4 months old. Wehad

> > thought he was having seizures at one time, but the tests came

back

> > normal and we haven't seen the behavior again. The neurologist

> > dropped a bomb on our world. I can't remember much of the appt.

> > after he said something was wrong with Caden's brain, but my

> husband

> > said he mentioned Mitochondrial disorders. He ordered an MRI/MRS

> > which we had done this past Wednesday and should get the results

> > from today. He was looking for encephalopathy (?) and basil

> ganglia

> > lactose in his brain. Does this sound familiar to anyone? He is

> > basing his observations on the facts that: 1. Caden's low tone,

2.

> > His inability to communicate with the world, and 3. His constant

> > movement. Caden coo's all the time, but he can't reach out and

> grab

> > for things he wants and so on. The neuro said based on those 3

> > things, that it could be a long list of things and he wouldn't

give

> > us any names of anything. Caden is the most beautiful baby we

have

> > ever seen. (an unbiased opinion!) He looks perfectly normal when

> > you see him. Besides his reflux, he really hasn't been sick at

> > all. He eats great and always has. He has the most beautiful

> smile

> > you have ever seen. He is our first child and the first

grandchild

> > on my side of the family. You can imagine how spoiled he is!!

He

> > has all these toys that he can't play with. We know he can see

> > light, because he always turns towards it and he laughs at

shadows

> > that pass his face and loves peek-a-boo. I look back now and

> wonder

> > about all the screaming that we thought was reflux pain and I

> wonder

> > if that was really what it was. The neuro. gave us best case

> > scenario is Caden being able to take care of himself one day and

> > worse case scenario is " shortened life expectancy. " took

> > that as to be 30 yrs old, I took it to be MUCH less. Of course

> > after we saw the neuro, we went home and started researching mito

> > dosorders and found some info we wished we hadn't had to read and

> my

> > husband decided my interpretation of shortened life expectancy

was

> > more accurate.

> >

> > Well that is our story....now I have a few questions. Any info

> > would be greatly appreciated. If Caden has a mito disorder, what

> do

> > I need to ask for next? Is a muscle biopsy the next step? I

know

> > we need to be able to have it done fresh, not frozen if so. Does

> > Caden's story sound familiar to any of you? Does it sound like

> > mito? If Caden can't hold his head up yet, can I ever expect him

> to

> > be able to?? What about sitting, walking?? Do I need to be

doing

> > something different for him now, in the mean time?? What else do

> we

> > need to know?? How do you cope day to day? Did I give this to

my

> > son? Will I ever be able to have more children? Will they have

> > mito also?? HELP please! I appreciate you all reading my long

> post

> > and any info you can give us.

> >

> > Vicki &

> > Caden: 10/08/03 Reflux, laryngomalacia, low tone, possible vision

> > impaired, possible mito disorder..Our wonderful " noodle " !!

[Guest guest]

In a message dated 7/29/2004 7:29:28 PM Eastern Daylight Time,

yvonj2001@... writes:

Does anyone have experience or any

suggestions for this? The next question, I feel tired and have sore

nipples,

----------------------------

[Guest guest]

welcome ybonne and jeanette. i'm jennifer, sahm to 4 3/4 year old benjamina dn

10 weeks pregnant with #2. i'm also wife to currently deployed air force man

david. we live in wichita kansas. i had lap rny on march 12, 2004 and have

lost 106 lbs.

jeanette, good luck trying to concieve. take your vitamins and drink lots of

water.

yvonne, how do eggs, cottage cheese, milk, cheese, etc treat you? those are

excellent sources of protein. make sure you are taking your viatmins and

drinking lots of water. as for the lack of nausea. with ben and this one,

nausea didn't hit til about 7 weeks. but my pregnancy with ben and one of my

angels, breast soreness was the first sign of pregnancy, so you are prefectly

normal. i ws worried with this one, because i don't have as much breast

soreness. but everyone and every pregnancy is different. i haven't seen a

nutritional plan for women with GB, but my WIC people keep telling me to put

butter and sourcream on anything to get extra calories. i jsut can't, so i just

eat regular. i do have terrible nausea and vomiting tho, so dr put me on zofran

and boy is it a whole new ball game now! i feel like in teh last two days i've

become a stuffed pig! actually eating and keeping down food! LOL...

anyway, you two, welcome to the group! congrats ont eh pregnancy yvonne and

good luck jeanette!

aka mom2ben99 (jennilee75@...)

Kay Independent Beauty Consultant

http://www.marykay.com/koopmans

I have all your summer care needs...tanning lotion, sunblock, even sunblock for

your lips, get yours today!

New

Hello to All! Congratulations to expectant and new moms. I had open

RNY surgery. I will be three years post op on August 31, 2004. I lost

over 100 lbs after gastic bypass surgery. I am now almost 7 weeks

pregnant. I have questions and fears related to pregnancy and

bariatric surgery. My first OB appointment isn't until next week. My

first question is concerning nutrition. I have always had a difficult

time eating meat after surgery thus limiting protein sources. Since

becoming pregnant it is really difficult for me to eat meat. I don't

get nausea but I vomit. Does anyone have experience or any

suggestions for this? The next question, I feel tired and have sore

nipples, but I am not feeling nausea is this more common with GB

patients? Lastly, has anyone received a nutritional plan specificaly

for pregnant women who have had GB? Thank you in advance for your

comments and support. I am glad I found this group!

Children are a blessing, and a gift from the Lord. -Psalm 127:3

[Guest guest]

Welcome Yvonne. Regarding the meat ?, this might sound a little

yucky, but what helped me was to blenderize homemade soups. That way

the beef, or whatever, is nice & mixed in with the rest of soup. I'm

in the market for a good food processor, so I can make good stuff for

bb. HTH.

WlsMomma

19 weeks, 4 days

> Hello to All! Congratulations to expectant and new moms. I had open

> RNY surgery. I will be three years post op on August 31, 2004. I lost

> over 100 lbs after gastic bypass surgery. I am now almost 7 weeks

> pregnant. I have questions and fears related to pregnancy and

> bariatric surgery. My first OB appointment isn't until next week. My

> first question is concerning nutrition. I have always had a difficult

> time eating meat after surgery thus limiting protein sources. Since

> becoming pregnant it is really difficult for me to eat meat. I don't

> get nausea but I vomit. Does anyone have experience or any

> suggestions for this? The next question, I feel tired and have sore

> nipples, but I am not feeling nausea is this more common with GB

> patients? Lastly, has anyone received a nutritional plan specificaly

> for pregnant women who have had GB? Thank you in advance for your

> comments and support. I am glad I found this group!

[Guest guest]

First of all, welcome. You are most definitely in the right place. Even if mito is not the true diagnosis for your son, the group here is very knowledgeable and we have all rowed in your boat!

Many of the things you describe can be signs of mito disease: fatigue, loss of skills, motor delay or loss of motor skills, even becoming more emotional about events that may not have ever bothered him before. Certainly i'm not a doc, but have been down this road with both of my kids so it sounds like you and your doctor are on the right track.

Do you have a good specialist who really knows mito diseases? That would be my first recommendation is to hook in with a good facility that knows their stuff. Second would be to treat the symptoms as they come down the pike: are you working with OT and PT, maybe even speech therapy to assist with the issues you mentioned like not being able to calm down or listen (sounds like sensory integration problems, maybe). Also, is the school working with you? You are going to need a very specialized plan in place to address these unique needs.

Anyway, i know you've got a long road ahead of you, but you have landed at the right spot. No question is ever too trivial or any topic too intense.

glad you're here.

ruth

mom to Mitch (almost 10) and Lexi (almost 7) both mito affected and my treasures

[Guest guest]

I think that you are in the right place. Sorry that you are going

through a hard time. Has your son been formally tested? Is he on

any of the " mito " suppliments?

Beth

>

>

> I dont know if I,m in the right place,Ihave got a little boy and

the

> doctor belived he got a metabolic genetic illness,he presents with

> motor regression (ataxia)he has been getting worse over the past

> year,can not walk outside,on even floor he uses a reverse

> walker ,indoors he is always bumping into everything he wears a

> protective helmet.Most of the time he is very,very tired .He

> adquired nystagmus on his eyes and does not have periferial

> vision ,he needs to sleep with a raised mattress as he feels sick

> often at night,when he got an illness like virus,etc ,he feels

> really unwell,and gets really floppy and tired.At school he is

> starting to get emotional and cry a lot.At the moment he does not

> havea diagnosis yet but is having lot of test eegs,awake and

> sleeping,blood and urine test,he had an mri about a year ago who

was

> inclonclusive,and a lumbar tab.At times at home he is getting

> really difficult trobing things about in the air,bumping into

> rverything,not lisening or calming down,like he can not

> understand ,when he is not like that or too tired he is lovely,tals

> nicelly and is great,but sometimes is really hard getting him

> lisening,and calming down,I dont know if you got any ideas or

tricks

> helping him to listen as is affecting his meal times,dressing,and

> anything we may be doing if he is in that mood,

[Guest guest]

You are in the right place all right. My eight year old son sounds a lot like yours. He has ataxia, wears a helmet, is extremely hyperactive at times, and used to struggle with severe fatigue, crying jags, etc. The supplements and meds we have him on have helped tremendously so get some help starting those as soon as possible. See the Untied Mitochondrial Foundation website for more info on that: www.umdf.org.

As far as tricks, I wish I had more. The only thing I've known to do so many times is to put on an educational tv show to help Craig calm down or rest so he wouldn't hurt himself. He always needs something to keep his mind busy or he will be running around bumping into things, tripping, etc. Have things out for him to look at, play with like books, blocks, etc.

Sometimes, when I am at my wits end, I have to make a joke out of things to get his attention and keep myself from exploding. Say a silly word or use a silly voice. Try whispering in his ear (instead of yelling) or taking his shoulders and looking him in the eye to get his attention.

I use a list in the morning (use pictures if he's too young) of things Craig needs to do to get ready. He has a game piece to advance each time he does what is on that square. It takes a lot of patience and creativity, and prayer! When you feel like you can't take it anymore, God will give you new ideas to try. It's a creative problem solving adventure! Hang in there.

Medications for hyperactivity can be helpful too. We are still in the process of trying to find one without too many negative side-effects.

Hope this helps. My heart is right there with you.

Donna

mom to Craig (8 year old with unspecified mito) and Dalton (6 year old with possible mito, but doing well)

new

I dont know if I,m in the right place,Ihave got a little boy and the doctor belived he got a metabolic genetic illness,he presents with motor regression (ataxia)he has been getting worse over the past year,can not walk outside,on even floor he uses a reverse walker ,indoors he is always bumping into everything he wears a protective helmet.Most of the time he is very,very tired .He adquired nystagmus on his eyes and does not have periferial vision ,he needs to sleep with a raised mattress as he feels sick often at night,when he got an illness like virus,etc ,he feels really unwell,and gets really floppy and tired.At school he is starting to get emotional and cry a lot.At the moment he does not havea diagnosis yet but is having lot of test eegs,awake and sleeping,blood and urine test,he had an mri about a year ago who was inclonclusive,and a lumbar tab.At times at home he is getting really difficult trobing things about in the air,bumping into rverything,not lisening or calming down,like he can not understand ,when he is not like that or too tired he is lovely,tals nicelly and is great,but sometimes is really hard getting him lisening,and calming down,I dont know if you got any ideas or tricks helping him to listen as is affecting his meal times,dressing,and anything we may be doing if he is in that mood,Please contact mito-owner with any problems or questions.

[Guest guest]

Wow, answering this question is a hard one that many of us deal with but are

at a loss as to how to help many times either. My daughter has lots of the

same issues and often stroke episodes along with med changes can cause the

behaviors and mood swings. We are at a loss as to how to deal with them as

well. We do try to keep her calm and really listen to her trying to find

out the reason for her stress. Headaches, tummy aches, frustration over not

being able to do something or communicate something; all these can affect

her greatly. This past week she again has seemed more immature with

childlike behavior, attitudes, speech, etc. and her therapists have also

noticed. We just try to readjust our expectations trying to understand that

" right now " she just isn't as mature and hope tomorrow will be better. This

can be extremely frustrating to watch and listen to as we are so out of

control of helping. I understand what you must be feeling. I am sorry I

probably am not much help but wanted to let you know your not alone and also

to say welcome to the group.

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

a photo look into what Mito looks like

Darla: mommy to

Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

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

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

gastric emptying issues...

Zipporrah (16 months) Mito, strokes, neuro-motor planning dys., SID, GERD,

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

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

hypertonicity, migraines, possible seizures, dumping syndrome, iron

deficiency, ...

Luke (16), Leah (14), Rachael (13), Isaac (11), Tirzah (8), Kezia (4), &

Marquis (3), Joey & (14 months) (some with Mito symptoms)

new

>

>

>

> I dont know if I,m in the right place,Ihave got a little boy and the

> doctor belived he got a metabolic genetic illness,he presents with

> motor regression (ataxia)he has been getting worse over the past

> year,can not walk outside,on even floor he uses a reverse

> walker ,indoors he is always bumping into everything he wears a

> protective helmet.Most of the time he is very,very tired .He

> adquired nystagmus on his eyes and does not have periferial

> vision ,he needs to sleep with a raised mattress as he feels sick

> often at night,when he got an illness like virus,etc ,he feels

> really unwell,and gets really floppy and tired.At school he is

> starting to get emotional and cry a lot.At the moment he does not

> havea diagnosis yet but is having lot of test eegs,awake and

> sleeping,blood and urine test,he had an mri about a year ago who was

> inclonclusive,and a lumbar tab.At times at home he is getting

> really difficult trobing things about in the air,bumping into

> rverything,not lisening or calming down,like he can not

> understand ,when he is not like that or too tired he is lovely,tals

> nicelly and is great,but sometimes is really hard getting him

> lisening,and calming down,I dont know if you got any ideas or tricks

> helping him to listen as is affecting his meal times,dressing,and

> anything we may be doing if he is in that mood,

>

>

>

>

>

>

>

>

>

> Please contact mito-owner with any problems or questions.

>

[Guest guest]

I am sorry to hear of your loss. I am not sure about the geneticist

question; as to who might want to research your son's case further. There

are a couple men who specifically only/or almost only work with diagnosis,

so they might be interested. (Dr. Shoffner and Dr. Cohen) The other women

in this group may have been help for you.

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

a photo look into what Mito looks like

Darla: mommy to

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

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

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

gastric emptying issues...

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

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

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

hypertonicity, migraines, possible seizures, dumping syndrome, iron

deficiency...

Luke (16)migraines, sensory issues, & some evidence of SLE's...

Leah (14), Rachael (13), Isaac (11), Tirzah (8), Kezia (4),

Marquis (3) prenatal drug & alcohol exposure with likely FAS, behavioral

issues, SID...

Joey (15 months) with hydrocephalus, dysgenesis of the corpus callosum,

encephalomalacia & leukomalacia, possible arachnoid cyst,

New

Hi, my name is Dyana and I just had my son passed away from

Cytochrome C Oxidase (COX IV). Connor was born on June 14th, 2004.I

have two other boys from a previous marriage (no genetic disorders

that we know of), and this was the first child between my fiancé and

me. We had a normal pregnancy and delivery (he even had a 7 and a 10

on his APGAR) but about an hour after he was born he started to have

seizures. He was on a vent for the first 19 days (off and on) due to

the seizure meds. He remained on a nasal canula after that. I have a

list of 12 active diagnoses' - sever reflux, in ability to swallow,

neurological delays, hypotonic, etc. After two months and several

tests - MRI, CT, EEG (which confirmed the seizures) Blood work-ups,

and sleepless nights -we were told in a nut shell - " all tests

(except the EEG) are coming back normal " . When he was scheduled for

a G-tube and fundo the geneticist ordered a muscle biopsy as a last

check. On Aug Fri. the 13th of 2004 - I received the call. We can

treat the symptoms; there is no cure, a few months IF THAT! Since

there was nothing else to be done we made arrangements to bring

Connor home and be a family for as long as we could - we still had

hope. He was able to come home for two almost three weeks total.

After a week back at ish Rite he passed away on Oct 6th, 2004

in my arms. There was only a 1% chance that my fiancé and I would

even come together and only a 25% chance of this happening (and that

is the % every time we get pregnant if we choose to have any other

children together) why can't I beat odds like that in Vegas! We are

sad but my motivation now is information, connection, support,

information. Does anyone know of geneticist that would be interested

in his case for research? Has anyone had a similar experience? What

can I do to help promote further research about genetic and Mito

specific causes?

Any info will be appreciated: thirdborn_2004@...

~Dyana

In Loving Memory of

Connor Trey Sands Irwin

June 14, 2004 - October 6, 2004

" Our little Prince "

www.geocities.com/thirdborn_2004

http://connor-irwin.memory-of.com/about.aspx

Please contact mito-owner with any problems or questions.

[Guest guest]

On Fri, 24 Mar 2006 00:09:54 -0000 " "

writes:

> HI, I AM NEW TO THE GROUP. AM GOING TO START THE SCD SOON. I HAVE

> ALREADY STARTED WHAT I CAN, BUT AM WAITING FOR THE BOOK TO MAKE SURE

> I

> AM DOING THINGS CORRECTLY.

> I HAVE UC, DIAG IN 1999. WAS IN THE HOSPITAL MID FEB WITH SEVERE

> DIAR. AND BLEEDING. AM STILL HAVING SOME SYMPTOMS, LOOSE STOOLS, A

> LITTLE BLEEDING. TAPERING OFF PREDNISONE. I AM ON COLAZAL,

> CHOLESTRYAMINE AND MESALAMINE ENEMAS...DON'T WANT TO GO ON 6MP, BUT

> AM

> AFRAID THAT I MAY HAVE TO...ANY ADVICE?

> ALSO ANY ADVICE FOR STARTING THIS NEW DIET TO BULK UP THE STOOL? i

> DON'T KNOW IF IT IS THE LOW CARB DIET DOING IT, BUT MY STOOLS ARE

> SOFT

> AND MOSTLY FORMED, BUT WHEN I FLUSH THE TOILET THERE IS

> MUCH " CLOUDING " ...ANYONE ELSE WITH THIS PROBLEM?

>

> A LOT OF INFO FOR AN INTRODUCTION:)

> CANDICE

6 MP isn't as bad as I thought it would be for my son with Crohn's. He

got a flu shot, is taking vitamins (Freeda brand, the SCD line), washing

hands frequently. OTOH, if you have time to make the decision, a month on

SCD could start to turn you around. Take it slow, as per the BTVC

website. The book is the center of all this, but you will find that there

is a lot more info, broken down, on the website. And if you want more of

a step by step guide to introducing food, there is a suggested stages

list on the pecanbread site that is very helpful.

If you have time to take part in another email group too, check out

SCD-list@.... (or SCD-list-subscribe@...). There

are a number of active members whose kids or who themselves have IBD but

many of the members here are using the diet for autism and behavior

issues, so be aware that a lot of the discussions, such as enzymes, DAN!

therapy, and other issues aren't just more masses of info you'll have to

master at this point.

Is there a reason, such as vision issues, that you're more comfortable

typing in caps? It could be hard enough to read for some people who could

help you that they'll skip your posts in the future.

Take care, Fay

[Guest guest]

Welcome to the Group . I'm fairly new here myself. Our

daughter has been diagnosed with crohns since last Oct after

biopsies. She was bleeding from the colon however and the doctor

during the colonoscopy said " Ulcerative Colitis. "

There are many here more knowledgeable than I but I can share with

you what has worked for Ella. She has been one of those that has

been sensitive to even simple sugars--glucose--early on in the diet.

It could have been the illegal that we kept finding and removing that

kept her from tolerating more.

Her stools improved greatly on a diet consisting of lots of the

following:

Eggs,

Chicken Soup recipe in the book with bone broth added in

Ripe Bananas and Banana/Egg pancakes

Small amounts of pearsauce--homemade!!! Must be homemade we've

learned

Steak

Hamburger

Chicken Thighs

Butternut squash

1/4 cup Welchs grape juice 1/2 cup water

Shes had some applesauce as well early --make sure homemade!

SCD Multi Vitamin

Whenever we got a little less then formed we'd crank up the

meats/eggs and back off the glucose in juice, pearsauce, and ripe

bananas with spots. Her poop would then come back to trophy logs.

Given Ella's experience I'd really watch the sugar intake early on.

Understand that as you cut back the bad gut bugs will be starving and

will have as many explain here " die off " . Your body will have to

eliminate remnants of these bugs and that is what you might be seeing

in your stool now.

As Ella's poops stayed consistent logs for a few days we would add

more carbs--simple sugars--thru upping Ella's juice, pearsauce,

bananas. These were really here " govenor " as we watched her stool

formation.

Now 5 months into the SCD we'ved add the goat yogurt and she's doing

great. ALL her bloodwork came back normal and shocked our GI to

exclaim " What was the name of that diet book again? I'd like to order

6 more copies "

The SCDiet has been a miracle for us. I think you will find it

extremly helpful in your healing process.

Brent Father of Ella Crohns 4ys old. SCD 5mo

>

> HI, I AM NEW TO THE GROUP. AM GOING TO START THE SCD SOON. I HAVE

> ALREADY STARTED WHAT I CAN, BUT AM WAITING FOR THE BOOK TO MAKE

SURE I

> AM DOING THINGS CORRECTLY.

> I HAVE UC, DIAG IN 1999. WAS IN THE HOSPITAL MID FEB WITH SEVERE

> DIAR. AND BLEEDING. AM STILL HAVING SOME SYMPTOMS, LOOSE STOOLS, A

> LITTLE BLEEDING. TAPERING OFF PREDNISONE. I AM ON COLAZAL,

> CHOLESTRYAMINE AND MESALAMINE ENEMAS...DON'T WANT TO GO ON 6MP, BUT

AM

> AFRAID THAT I MAY HAVE TO...ANY ADVICE?

> ALSO ANY ADVICE FOR STARTING THIS NEW DIET TO BULK UP THE STOOL? i

> DON'T KNOW IF IT IS THE LOW CARB DIET DOING IT, BUT MY STOOLS ARE

SOFT

> AND MOSTLY FORMED, BUT WHEN I FLUSH THE TOILET THERE IS

> MUCH " CLOUDING " ...ANYONE ELSE WITH THIS PROBLEM?

>

> A LOT OF INFO FOR AN INTRODUCTION:)

> CANDICE

>

[Guest guest]

>

> Thank you Fay. Is your son still on 6MP? Does he get monthly

bloodwork done?

candice uc/scd 1 week

>

> On Fri, 24 Mar 2006 00:09:54 -0000 " "

> writes:

> > HI, I AM NEW TO THE GROUP. AM GOING TO START THE SCD SOON. I

HAVE

> > ALREADY STARTED WHAT I CAN, BUT AM WAITING FOR THE BOOK TO MAKE

SURE

> > I

> > AM DOING THINGS CORRECTLY.

> > I HAVE UC, DIAG IN 1999. WAS IN THE HOSPITAL MID FEB WITH

SEVERE

> > DIAR. AND BLEEDING. AM STILL HAVING SOME SYMPTOMS, LOOSE

STOOLS, A

> > LITTLE BLEEDING. TAPERING OFF PREDNISONE. I AM ON COLAZAL,

> > CHOLESTRYAMINE AND MESALAMINE ENEMAS...DON'T WANT TO GO ON 6MP,

BUT

> > AM

> > AFRAID THAT I MAY HAVE TO...ANY ADVICE?

> > ALSO ANY ADVICE FOR STARTING THIS NEW DIET TO BULK UP THE

STOOL? i

> > DON'T KNOW IF IT IS THE LOW CARB DIET DOING IT, BUT MY STOOLS

ARE

> > SOFT

> > AND MOSTLY FORMED, BUT WHEN I FLUSH THE TOILET THERE IS

> > MUCH " CLOUDING " ...ANYONE ELSE WITH THIS PROBLEM?

> >

> > A LOT OF INFO FOR AN INTRODUCTION:)

> > CANDICE

>

>

> 6 MP isn't as bad as I thought it would be for my son with

Crohn's. He

> got a flu shot, is taking vitamins (Freeda brand, the SCD line),

washing

> hands frequently. OTOH, if you have time to make the decision, a

month on

> SCD could start to turn you around. Take it slow, as per the BTVC

> website. The book is the center of all this, but you will find

that there

> is a lot more info, broken down, on the website. And if you want

more of

> a step by step guide to introducing food, there is a suggested

stages

> list on the pecanbread site that is very helpful.

>

> If you have time to take part in another email group too, check out

> SCD-list@... (or SCD-list-subscribe@...). There

> are a number of active members whose kids or who themselves have

IBD but

> many of the members here are using the diet for autism and behavior

> issues, so be aware that a lot of the discussions, such as

enzymes, DAN!

> therapy, and other issues aren't just more masses of info you'll

have to

> master at this point.

>

> Is there a reason, such as vision issues, that you're more

comfortable

> typing in caps? It could be hard enough to read for some people

who could

> help you that they'll skip your posts in the future.

>

> Take care, Fay

>