RE: just getting started with all of this

November 30, 2004

HI Mandy,

WElcome to our group and on the other hand i'm sorry of the circumstances that have brought you here. Sounds like you've got two beautiful girls to be proud of.

I'm a mito mom to two kids, Mitch (9 1/2) and Lexi (6 1/2). Mitch was developing normally until the age of 6 1/2, and in the last 3 years we have been learning more about the very different ways that mito can show up in a child.

Lexi started showing problems at 4 hrs old. She had difficulty breathing on her own, slow heart rate, apnea, turning blue, reflux, cyclical constipation, feeding difficulties, failure to thrive, poor weight gain, and over the years has also had difficulty with being unable to urinate (sometimes will go up to 3 days without being able to pee), atypical seizures (hers show up as hiccups, go figure), and still difficulty with turning blue with stress, heat, fatigue, etc. Having said all that, she is also normal cognition, walks and talks, and for the most part people who see her have no clue what we've been through. The first year of her life, we were frequently told not to expect her to live. She has been in the hospital 30 times. But yet she's still here and she's quite a scrapper.

Mitch as i said earlier was my "normal" kiddo...healthy as a horse, never even went to the doctor until he was 18 months old, talked in sentences at 12 months old (speech therapist's kid, what can i tell you? lol), and was just doing great...until we hit school. Then we started to see little things, like trouble with handwriting and a bit of a late reader. He couldn't ride a bike when all the neighbor kids could, wasn't a fast runner, etc. But his language skills were so advanced i sort of just overlooked alot of little symptoms. Then at 6 1/2, his first grade teacher told me he was having significant difficulty focusing in class. I called the doc, we thought maybe ADHD, tried meds but they didn't help. Then his gross motor skills started to deteriorate. He wasn't able to do his beloved tae kwon do which he had done since the age of 4 and by 7 1/2 i had to admit there was a serious problem. We started private PT and OT and finally started to see some gains with gross motor skills. The schools meanwhile said they wouldn't help him, bc his language was so high that he didn't qualify for special ed. Each year has been worse than the year beofre, while i watch my son struggle with a growing moutnain of homework that he will never be able to keep up with and demands placed on him that he is just incapable of meeting. Last year he started falling asleep in class and the motor skills got worse. We got a tentative Dx of muscular dystrophy...still the schools wouldn't help him. They did put him on a 504 plan, but no OT or PT offered at school. This year we saw the mito specialist. he wasn't even sure it was mito, said if it was, it was mild and/or at the beginning stages. So there was no medical help. And he is still struggling to keep up, still falls asleep in class, and still feels like a failure for needing any kind of modifications (which he won't use in class, bc it "embarrasses" him).

Meds for both kids have included the vitamin cocktail , and Lexi also takes Bicitra to keep her out of lactic acidosis. We have seen marginal results.

Anyway, that is our story in a nutshell. Hope it helps somewhat to know that you may be in an ugly boat, but we're all rowing with you.

ruth

mito mom to Mitch and Lexi, both mito affected and my treasures

November 30, 2004

hi mandy,

you have found a wonderful group of people. they will be able to help

you alot. i dont know what i would have done without them.

my name is davonne and my little baby girl passed away august

10,2004. she was 20 months old. dr.shoffner gave us her diagnosis on

march 30th 2004. she had her biopsy done here in knoxville on jan 22

2004 and sent to atlanta. she came down with the croup and just

couldnt get better, her ped sent us to the er and they admitted her.

she started having seizures, would turn blue and not eating good. she

also had a mri of her brain while we were in the hospital. her mri

was bad!! when dr.shoffner called and told us the results in mid

march we made an appt with him, we took her mri film, he was very

surprised at how well she was doing at this time after looking at her

film. he told me he didnt think she would make it to after christmas.

i did not believe him. he said the vitamins would not help her,

therapy would not help her. he said to take her home and enjoy what

we have. we did. after that she started going down very fast! she

fought hard. she lost her vision in march,stopped eating in march and

had a feeding tube placed, little by little this terrible disease was

eating her away. i never ever thought that i would lose my baby at 20

months old. she was the sweetest angel ever. she was to good for this

world. she never cried, never vomited, no problems what so ever the

docs here just kept saying

she will be a little slow due to having rsv when she was 1 mos and 2

mos old. she sat up.tried to crawl, gave me kisses, played patty-cake

and then she couldnt do any of these. she deeply loved her sister{8)

and brother{3) {they are fine}

on july 10, was when the really bad started to happen. she started

her dying process. we called in hospice and they said 24-48hrs, they

told us we needed really needed to start making her plans. little did

they or me know that she would fight so hard for almost 5 weeks. this

is very sad for me, i have a very hard time, but i read your message

and i just wanted to reach out to you. i am a very honest person and

i want to help in anyway that i can. i hope none of this offends you.

i think everyone should know what this awful disease can do to a body.

i am very sorry for you and all these other special people. please

feel free to call me at or email me.

how old is your little one??? you can see karlee beth,me,kaitlin,

and karson in the photo section. i hope the best for you. please let

me know if i can help you. i am truly truly sorry.

please remember me. and remember my angel.

love and prayers,

davonne, moma to karlee beth{11-14-02 8-10-04},kaitlin 8, and karson

and been married to their daddy, kip, for 10 years

November 30, 2004

Welcome to the group! Glad to hear you have been able to seek help

through Dr. Shoffner. We haven't seen him so not sure what the average wait

time for a biopsy return is there, but our 4 year old daughter's biopsy

returned in three months and unfortunately after 7 months for my 1 year old,

we are STILL waiting! Hope you get yours much quicker!

Treatment varies greatly depending on symptoms and I am sure lots of

the moms on this list may have lots of answers for you. Asenath and

Zipporrah take different medications (some are a part of the Mito cocktail),

have PT, OT, and Speech/cognitive/oral-feeding Therapy, lots of rest, doc

appointments, avoidance of stresses, viruses, heat, too much exercise, etc.

Just watch for anything that seems to take a toll on your child and gage how

much to let them do. Overexertion can actually cause illness and regression

in lots of Mito kids, as can heat and illnesses. If you haven't visited the

UMDF website, do so as it has a wealth of information. Also, if you have

any other specific questions, feel free to ask this group because there is

usually someone who has experienced what you are going through. You

mentioned you wanted to read some stories of kids dealing with Mito. Lots

of us have caringbridge web sites (often listed above or below our names at

the end of postings). They are a great place to go to learn more. One of

the moms in this group recently put together a book called " Mito Memoiors "

that can be purchased at heartbeatsformito.org (It has stories of families

dealing with Mito presently or the loss of a family member due to Mito.)

Ann Eide put it together and also used my two girls for a photo collage

portrayal of what Mito kids may go through when dealing with Mito. There

are 5 pages of photos in many different medical environments that you can

see. You just go to the link talking about a " real look into Mito " in the

directory section of the heartbeatsformito.org location.

Again, welcome. Hope this helps you a little.

See www.caringbridge.org/ia/mitomomof9 and this link to see a real look into

Mito using a photo collage of my girls at www.heartbeatsformito.org

Darla: mommy to

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

hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting...

Zipporrah (12 months) Mito, strokes, neuro-motor planning dysfunction, SID,

GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery,

disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping

syndrome, iron deficiency...

Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), &

Marquis (2) (some with Mito symptoms)

just getting started with all of this

>

> Hello,

> I am Mandy. Mom to two beautiful girls. Jaden my 10 year old is

> normal developing. Except for mild scoliosis and over active bladder

> she is fine. Mikaila on the other hand is my sick little one. She has

> Intractable Primary Generalized Epilepsy, Sensory Integration

> Dysfunction, Chronic vomiting, Developmentally Delayed, growth

> delayed, Hypoglycemic episodes, Learning Disabilities and Reflux. She

> has failed Tegretol, Carbatrol, Topamax, Depakote, Dilantin, Keppra,

> and Lamictal. She is not a surgical canidate and her neuro doesn't

> feel that the VNS will work for her. She just had her skin and muscle

> biopsies and lumbar puncture last Wednesday (11-24). To make a long

> story shorter after going through many different doctors and

> specialists Dr. Shoffner heard about Mikaila and called us with an

> appt. We are so lucky to have him here in Georgia. He told us that it

> is highly unlikely that Mikaila will get any better but what he

> hasn't told us it what we are looking at as far as a plan to help

> Mikaila. How long did it take for you all to get your biopsy results

> back? What kind of treatments have you done that works? I know that

> every child is different. I would love to talk to other moms and read

> other children's stories. Please email me with any help you can give.

> I guess I am just looking for a little guidence in all of this. I

> pretty much know everything else she has but this Mito stuff is all

> new and confusing.

>

> Thanks for reading all of this,

> Mandy

>

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

>

December 1, 2004

Welcome to the group. You have found a very warm and caring group to help you through your families "journey". Our family has 5 children, only one is mito affected. Our mito baby is Grace, she is two 1/2 years old. She had her muscle biopsy done at Cleveland Clinic, by Dr. Cohen. For us it took about three months to get results. Do not be surprised if you get unconclusive results, it is very common. With Grace we were able to get a stone cold diagnosis of mito, but a non specific form. From what Dr. Cohen has told us, Grace is one of the first of her type so it does not have a name yet. She was started on the mito cocktail a little before her surgery, and has reacted to it quite well. Before the medicines she was a very ill baby, and was very close to needing a liver transplant. Now she is an active two year old. She, of course, has many health issues but as of now she is coping with her struggles quite well. Best wishes.

Rock, jazz, country, soul more. Find the music you love on MSN Music!

December 1, 2004

Welcome to the group. You have found a very warm and caring group to help you through your families "journey". Our family has 5 children, only one is mito affected. Our mito baby is Grace, she is two 1/2 years old. She had her muscle biopsy done at Cleveland Clinic, by Dr. Cohen. For us it took about three months to get results. Do not be surprised if you get unconclusive results, it is very common. With Grace we were able to get a stone cold diagnosis of mito, but a non specific form. From what Dr. Cohen has told us, Grace is one of the first of her type so it does not have a name yet. She was started on the mito cocktail a little before her surgery, and has reacted to it quite well. Before the medicines she was a very ill baby, and was very close to needing a liver transplant. Now she is an active two year old. She, of course, has many health issues but as of now she is coping with her struggles quite well. Best wishes.

Rock, jazz, country, soul more. Find the music you love on MSN Music!

December 3, 2004

Dear Mandy,

You can read my story at www.samyahaddad.com , my older daughter's

memorial website. I lost my 8 year old, Samya to mito 2 years ago and my

other daughter, Leanna has the same and is 7. It took about 2 months to get

complete biopsy results for Samya. They came after she died confirming her

diagnosis. Leanna never had one because her blood confirmed her disease. I

am so sorry that you are part of the mito world. However, support you will

find here and lots of understanding. Hong in there.

God bless,

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

with same disease.

Samya's Memorial Site: www.samyahaddad.com/.org/.net

Email: Suhad1970@...

Alt Email: Suhad@...

AiM Chat: Suhad1970

just getting started with all of this

Hello,

I am Mandy. Mom to two beautiful girls. Jaden my 10 year old is

normal developing. Except for mild scoliosis and over active bladder

she is fine. Mikaila on the other hand is my sick little one. She has

Intractable Primary Generalized Epilepsy, Sensory Integration

Dysfunction, Chronic vomiting, Developmentally Delayed, growth

delayed, Hypoglycemic episodes, Learning Disabilities and Reflux. She

has failed Tegretol, Carbatrol, Topamax, Depakote, Dilantin, Keppra,

and Lamictal. She is not a surgical canidate and her neuro doesn't

feel that the VNS will work for her. She just had her skin and muscle

biopsies and lumbar puncture last Wednesday (11-24). To make a long

story shorter after going through many different doctors and

specialists Dr. Shoffner heard about Mikaila and called us with an

appt. We are so lucky to have him here in Georgia. He told us that it

is highly unlikely that Mikaila will get any better but what he

hasn't told us it what we are looking at as far as a plan to help

Mikaila. How long did it take for you all to get your biopsy results

back? What kind of treatments have you done that works? I know that

every child is different. I would love to talk to other moms and read

other children's stories. Please email me with any help you can give.

I guess I am just looking for a little guidence in all of this. I

pretty much know everything else she has but this Mito stuff is all

new and confusing.

Thanks for reading all of this,

Mandy

Please contact mito-owner with any problems or questions.

December 3, 2004