Re: worry

[Guest guest]

Angie,

I think worrying just come with th e Mom territory. When my son was diagnosed with autism I felt the same and th en since have learned all that I could and so much more info is out there now to parents then was 9 thanksgiving's ago. He got diagnosed the day before. And Now we still await a real diagnosis of mito as cause for his autism. But it seems to me that parents before me helped changed systems and I will do t he same for the parents that are having kids now. Their ch ildren are reaping the benefits of what our group advocated for and just never got it at the time. Just try to make the most infromed decisions that you can. And enjoy your child as much as you can.

I used to be so depressed at 1st and now I can laugh at his silly behaviors. But I have days that I want to scream. And the best thing for me is to have others that underdstand and can relate with me and somehow laugh about it later. Like when a nurse or doctor or school personel or strangers make you want to cry... my freind and I have tried to cheer each other up. autism is so hard with the odd behavior but like for ex: my friends kid is aggressive and school is refusing tolet her see a stupid sticker and if she can't obsess or know when she can see the sticker she is hitting and biting and kicking just because they won't let her see a stupid sticker ! And to relete medically I remember my son being hospitalized and some dumb aid wanted to show me (MOM!) how to give him a bath.. excuse me!.. I think alot of it is the guilt factor too.

Give yourself the credit that you deserve!

Kathy Foley

[Guest guest]

Hi Angie,

Please try to relax!! Worring about what is to come is not going to

help anything. My kids have a strongly suspected mito disorder even

though nothing concrete (DNA wise) ever turned up with the tests. They are

thought to have Leigh's. They are now 10 and 11 and have never had

seizures, blue spells, or many of the other mito symptoms. They get sick,

but they aren't near death when they are. Granted has a trach and is

on a vent, but that's because of his weakening muscles. They are both smart

and attend regular school and are the best kids. I know you are just

starting your journey, but just take things one day at a time. Worrying

never solves anything. And you may never know for sure if your daughter has

a mito disorder. It is such a complicated disorder to diagnose. Take your

babes and enjoy what she can do. Relish all the little things she does.

Treat her like she's a " normal " kid. Have high expectations for her. She

can sense when you are all in a dither and will react. I know it's easier

said than done, but you will " get used to it " and learn to take one day at a

time. Life is short no matter if you have a disease or not. Do you work

outside the home? Do you have any hobbies you can get involved with to help

focus on you for a while? That is so important to take care of yourself.

If you're not well and healthy what is going to happen to Gracie? I'm not

trying to give you more to worry about! I'm just pointing out you need

to take time for yourself. Do you see a therapist? Are yo on any

anti-depressants? I won't speak for everyone on the list , but I take

Celexa. It does help me deal with things much better. You cannot change

what is, you must adapt and move on. You can do it. I'm not going to sit

and tell you you are someone extra special because you were given a special

needs child. I don't believe that personally. But you are a mom and you do

what you need for your children. I've had to make some really big decisions

for my kids. Decisions no one should have to make, but it comes with the

territory so I do it. This list as well as the g-tube list, our-kids list,

vent list and trach list are my supports. We have no family out here and

while we have some friends, no one can care for the kids. We do have

respite which helps. Have you looked into early intervention or other

services for Gracie? Respite, SSI, Medicaid?

Now I have to go change diapers on my kids! I hope I didn't come

across too harsh or anything. That was not my intention. I know I've been

where you are and it does get easier to deal with. Please e me if I can

help you in any way. Take care and keep us posted.

Sue & Jack-worn out parents to the greatest kids on earth in Las Vegas, NV-

11 & 10-Both w/Leigh's Disease (?), MR (mild), g-tube,

w/fundo, larynotracheomalacia, trach, vent 24/7. Visit us!

http://u2.lvcm.com/jscb

> Hi. I wrote about my baby girl awhile back. We still don't have any

> answers (waiting for skin biopsy results), but her doctors are fairly

> certain that she has some type of mito disease. I have been eating

> myself up lately with worry and I just can't seem to stop obsessing

> about this. It is hard when every time we see one of Gracie's doctors

> (every couple of weeks at this point) they start warning us about

> seizures, blue spells, the danger of a fever or respiratory infection.

> It gets hard to handle sometimes. Except for some obvious eye problems

> and frequent vomiting, she seems fine. She is such a happy baby and so

> sweet. I can't stop worrying though and it is really affecting my

> relationships with my friends and family. I don't know how to stop

> feeling so bad because I know my sweet baby isn't going to grow up. Is

> there any way to get over this feeling of despair? How do you get on

> with your life despite your sick baby? I just don't know if I can

> handle this much longer. I don't know what to do. Any suggestions?

[Guest guest]

Hi all.

It's been a very long while since I've posted but I am finally back

on the list. I just tonight read of Staci and 's loss, and

then this post about worrying, and I think it finally pushed me from

my own pity party and motivated me to write.

For those of you who don't know my family, my name is ruth and I am

the mother of a 3 1/2 year old daughter named Lexi. Lexi has a

suspected mito disorder, probably Complexes I and III but not

confirmed. she has dusky spells, seizures, fatuges easily, and has

some minor gross and fine motor issues. She also suffers from

cyclical constipation, sensory integration problems, and

hypersensitivity to sound. Having said that, I want to say that she

is the light of my and my husband Steve's lives, and is an absolute

treasure. She and her older brother, Mitch (now 6 1/2) run around

like banshees, and make us crazy sometimes but we wouldn't have it

any other way.

About the worry issue. I KNOW about this, as it consumed me for the

better part of the first year of Lexi's life. The docs told us Lexi

would never live to see one. I agonized every single day thinking

about the " what if's " or the " should have's " . I resented every other

mother who could lay her baby down for a nap without a bajillion

wires hanging off of her body. I hated myself for not being able to

feed my kid and get her to gain weight...I mean what is a more basic

task than that for a mother?!?!?!?! And for God's sake, I'm a

feeding therapist! I get other people's kids to eat all the time.

What was wrong with me that I couldn't do the same thing for my own

child? I stopped seeing family and friends, especially those with

healthy babies. I think I resented them, too. And then came the

blinding depression, of the variety where I would have to DIG for a

reason to get up out of bed every day. I once even resorted to

thinking I couldn't kill myself that day because I hadn't unloaded

the dishwasher. Hey, whatever works!!

Anyway, the point of this long post is that I want to encourage you

that despite the horrible things you and your family may have to go

through, it DOES get better. I think it helps to focus on what your

daughter CAN do. Did she get through the day/hour/last 5 minutes

without vomiting? Hey, sounds like a reason to celebrate to me! Now

I am absolutely not trying to sugar coat this horrible disease or to

tell you that everything is going to turn out perfectly. WE simply

don't know what is ahead for any of us. But we CAN make a decision

to turn our worry and anger and fear and all the other emotions that

we feel and turn them into something incredible. There is a

tremendous amount of research that needs to be done. Research is

completed only with funding. What about brainstorming new ways to

fundraise or even promote awareness of the UMDF when you start to

worry? How many people do you know that can't even spell or

pronounce mitochondria!? Hmmm.....

I know this is long but I hope it helps. It's good to be back.

ruth for the hilandgang

[Guest guest]

Angie, I understand how you feel, been there, done that! It sounds like you

have gotten great advice already, this is the best place for it. I just

wanted to tell you not to fret over what the dr's tell you, they will give

you the worst case scenario, because that's what they hear about. I had the

same experience in early 2000, when my daughter's swallow deteriorated and

she was getting pneumonia. After her 2nd case in 6 wks, a gtube was put in.

The PICU dr's, while well meaning, basically told me CHelsea would keep

getting sicker. Her deteriorating swallow was an indicator she was getting

worse. And this was a 3 yr old with the physical skills of a 3 month old.

They told me because of her weak muscles and lungs, she would just keep

getting sick, even from her own secretions. They said she would probably need

a trach the next winter. Well, that winter (last) has come and gone and no

trach. In fact, Chelsea is farther from it than she ever has been, the gtube

actually improved her quality of life. And she just past the year mark of her

last hospitalization. Chelsea's life is not all roses, though. She still has

reached no milestones, and deals with seizures daily. I have learned to take

it one day at a time, that's all you can do. It was the hardest thing to

accept that Chelsea has a terminal illness, I wanted to and still want to

refuse to believe it. But there is always that point where reality does sink

in. This group has helped me alot, helped me to cope with this and put things

in perspective. I don't know where I would be if there wasn't 'here'. I also

have to give credit to God, those silent little prayers really work. For now,

just take a deep breath and relax!

e, Chelsea's mom(non-specific mito)

[Guest guest]

worry noone can tellyounottoworry but I can tellyouwhat Idid when my healthy 8yr old girl just one day said with a happy face mom I can't walk. she had no fever no cold no nothing not even any pain she just could not stand up. four months later all I got from the doctors after all the test was to take her home and make her life comfortable. she had they said 1month. I asked was there a diagnosis or prognosis they said no I said then only god can tell me when. I went home told the family I had 3 other cildren and 7 step children that all willbe the same that we will not act any different. I told GOD I will give my little girl back to him that I will care for her but I give her back toHIM. well that was 10yrs ago by all means my littlle girlshould not be here. we found a diagnosis Mitrochodrial myopathy w/ complex 1 def as the doctors explained it's like an electrical cord that is losing it rubber.well my little girl is stilllittle but she has a full life .she goes to school, school is fully aware of the condition and they work with us. we are military so where ever I go I make sure that schoolis ready for her.she loves life and life loves her. I know one day god will take her home but until then I still care for her for this is god's chose and not the doctor's because they tell me very little still and do nothing for her other than saying take her home and continue to do what I amdoing because that is keeping her going. I cry but I let God know that I amjust taking a brake and it's not that I don't believe in him. this is a hard thing but he the good Lord does help us deal with this unknown pain. I hope this will ease your worry. Don't worry much about the hell ahead worry about how tomake your angel's life a happy one. when my little one was on her bad days Iwould dress her up in bright colors and she loves it.her favorite pass time is shopping and eating at resturants. God Bless and I will keepyouin my prayers togive you strength and endurance. Ann

[Guest guest]

Angie

I can relate to your feelings of despair. I also can relate to having lived for 11 years now, with friends who don't understand what it is like to not know or trust that your child will wake up with you in the morning. The hardest thing I had to learn was not to expect them to understand. They mean well with all of their words of "encouragement" and I use that word lightly because it is not received by you in the intended manor. I learned to keep my frustration to myself, the Mito lists, and my doctors as even family does not understand at times. I learned that when people ask how the baby or the kids are, they really don't want to know the whole story, which I was very guilty of giving them because it was the way I live, but what I had to come to realize is it is not the way they live. I have lived for the last 11 years feeling like every day was a fight for my daughters life, then just 5 years ago we began the fight for my son, and my youngest is starting in now in needing the same. It is so exhausting, however I can't encourage you enough to try and store absolutely every good feeling and time you share with your baby. Do have hopes and do have dreams for that child. 11 years ago we heard that our precious baby would not live to see her first birthday, now I am dealing with boys and Brittany Spears. Kira has her struggles, but she also has her normal days of being a very "Normal" child with normal wants and good and bad behaviors. I have done CPR on my child multiple times, argued with ignorant ER docs who wouldn't listen, dealt with arrogant nurses and doctors, and delta also with very caring and loving doctors who have sat and cried with me. There is a definite form of parental abuse that goes on with having a sick child. I believe there is a God and I lean on him for sure. Find your area of strength and hold your head up high. Don't rob yourself of memories of your precious child because of what others say, parents of ill children go through the stages of mourning, just try and recognize that and acknowledge that you may be in one of those stages. But most of all remember, People who have not walked in your shoes cannot understand what a burden and a joy it is to walk in them. I will pray that you find peace my dear friend mito mommy. Be proud of who you are!

Huge hugs,

Ortiz

Mito Mommy smiling with tear filled eyes, holding on to Gods hand tightly, knowing He holds us in the palm of His hands and won't let go!

[Guest guest]

, you said so much and said it so well. Thank you for encouraging all of us.

Happy Thanksgiving.

Virginia, Emma's Mom

[Guest guest]

Ruth, good to hear from the "Hilandgang," especially with such words of wisdom and honesty. I am glad you celebrate your child's milestones in the way you do and that you have overcome the resentment towards others with healthy children. It is good to realize that it is going on and move forward. It is sometimes harder to do than others.

Out of curiosity, how did you realize Lexi had sensitivity to sound? I can't tell if my Emma has it or not (2 years 2 months), but she will sometimes start crying inconsolably and holding her head when certain songs come on or she hears a startling loud noise. I don't know if it is certain tones/pitches or what or if she just does not find certain sounds pleasant. It seems like an extreme response, though, at times.

Thanks again.

Virginia

[Guest guest]

,

I am an avid reader of this group, but very rarely do I post, but after reading what you wrote to Angie I just had to reply. I continue to go through those days of despair. Your words rang so true it was like you read my mind. God has blessed my husband and I with 3 fabulous children. My youngest, Stefany, passed away almost 6 years ago, she was 7. My oldest child is 19, they both have Leigh's Disease, Complex I & IV. 's prognosis was very grave when he was diagnosed 11 years ago and was not supposed to live past another 1 to 2 years. He is very much alive, although he is attached to a vent 24/7, g-tube and requires 24 hour care he is the light of our family.

I hang on tight to the happy memories and the expressions, smiles, hugs etc. Sometimes it's hard to block out the painful memories and deal with the everyday challenges that come with having a child with a mito disease, when I am so busy with my 18 year old daughter e, who has no signs of a mito disease, my part-time job, Dr. appts, arranging nursing, taking care of , the house, the meals, the laundry etc. I could go on but I won't. I see a therapist once a week, he has been a life saver. He listens, he does not judge he doesn't try to sugar coat the reality of my life and most of all he encourages me to take care of myself. I have to admit it is still an ongoing issue. I have spent most of my adult life taking care of others. Doing things to please others, trying to live up to what I think is expected of me. Hiding the very feelings that prevent me from taking care of myself. I am at that place now, I have managed to pull myself together and do the things for everyone else over the last several months, but it has caught up with me. My therapist and my husband see where this is leading and I now need to get away. I have been what they call "on point" for months, like on call 24/7 - I can no longer handle being that point person, I need to turn it over to my husband and walk away. This has happened only 2 other times, and when it does it is very serious. So on Thursday, Thanksgiving Day, I plan to go to the beach for about 3 days. No worry's, no responsibilies, phone calls, deadlines, diapers to change, medication to prepare. This is an extreme and I hope that this will not be the case in the future. My goal is that at least once a month to turn things over to my husband and take a day to myself when I am not accountable to anyone.

Thank goodness for this list and for your note, it really helps to know that there are others out there and we are not alone. I hope to come back from my trip refreshed and recharged and take one moment, one hour, one day at a time. Holding on to God's hand tightly as he brings forward a light for each new day.

Barb Hagdahl

[Guest guest]

When my oldest son (no mito) was a baby he would cry whenever Mick

Jager came on the radio. It took us forever to figure this out since

he could and would react to radios in other peoples' cars at stop

lights, etc.

Hejust don't like some things.

Twana

> Out of curiosity, how did you realize Lexi had sensitivity to

sound? I can't

> tell if my Emma has it or not (2 years 2 months), but she will

sometimes

> start crying inconsolably and holding her head when certain songs

come on or

> she hears a startling loud noise. I don't know if it is certain

> tones/pitches or what or if she just does not find certain sounds

pleasant.

> It seems like an extreme response, though, at times.

>

> Thanks again.

>

> Virginia

[Guest guest]

Virginia:

That may be with some kids normal responses to noises. I know

(who is normal in our language on this site) couldn't stand the

fire engine noises at 18 months and even around 2 years of age and there

were times when Leah didn't like certain noises either. Some times

kids crying, certain organ music at our church and startling loud noises

too. She has gotten alot better and can tolerate many more noises.

Except now at church she will fuss as soon as we are going to sit down,

but we think she is telling us, "Hey, I want to be with other kids and

not sit in church with you both." Because when we take her to the

nursery to play, she is fine. Go figure. But as we said earlier,

we celebrate those little things. Just have to throw in about celebrating.

Leah doesn't use words, she whines and fusses about ways to get her ideas

across to us. The other day at lunch she was eating toddler ravoli

and using her fingers and eating well. I came in to the dining room,

sat down at the table with my "snack" lunch of melted grated cheese over

dorito chips. She turned, looked at what I had, literally spit out

her food on to her tray and wanted my lunch. I gave her the chips

and she was happy and started to eat again. Celebrate that she communicated

to me about her wants.

Also, Virginia you mentioned about Emma being small. How small

is she? Was curious about that nice long post on your daughter.

I kept trying to print it out to respond more, but it wouldn't let me.

Glad Emma is using words and doing neat things.

mom to Leah

Ginny581@... wrote:

Ruth, good

to hear from the "Hilandgang," especially with such words of wisdom and

honesty. I am glad you celebrate your child's milestones in the way

you do and that you have overcome the resentment towards others with healthy

children. It is good to realize that it is going on and move forward.

It is sometimes harder to do than others.

Out of curiosity, how did you

realize Lexi had sensitivity to sound? I can't tell if my Emma has

it or not (2 years 2 months), but she will sometimes start crying inconsolably

and holding her head when certain songs come on or she hears a startling

loud noise. I don't know if it is certain tones/pitches or what or

if she just does not find certain sounds pleasant. It seems like

an extreme response, though, at times.

Thanks again.

Virginia

Please contact mito-owner

with any problems or questions.

[Guest guest]

, Emma is 2 years and 2 1/2 months and weighs about 22 pounds, but that goes up and down a bit. She looks like a baby - she is so thin. She gets about pretty well but she does not grow. She acts sensitive even to some soft songs. My Grandma was singing rock a bye baby to her today, and she started crying. She does that with certain music I play in the car. Yet she loves the Mozart and Bach stuff I played for her before she was born and well after birth - even though that would seem to be so much more intense, loud, commanding, etc. I just don't understand it.

She is such a joy, though. We just keep pretending she is her favorite dog Nikki (my inlaws' pet cockapoo) to get her to eat Nikki snacks and hope she will continue eating more.

Happy Thanksgiving, and thanks for your comments and insights.

Virginia

Virginia M. Buchanan

[Guest guest]

In a message dated 11/20/01 7:12:28 PM Pacific Standard Time,

cutillo@... writes:

<< As far as sensitivities, has sensitivity to loud noises >>

is 10, high functioning, and he can't stand loud noises, crowd noises,

and noises in the classroom when he's trying to concentrate. I'm on

disability for CFIDS, and since I've developed CFIDS, I " m VERY sensitive to

noises which never bothered me before. I think it just goes along with the

neuro thing........

Dena

[Guest guest]

BRAVO!!!!!!! BRAVO!!!!!!!!! YOU SAID IT SO ELEQUENTLY I AM IN YOUR SHOES AND SURELY UNDERSTAND

[Guest guest]

Barb,

I know the feeling and you expressed it so well. That I also need to find a way to escape the stress that mito and autism brings to our family and yet also make my husband be responsible to do so. I am feeling guilty just trying to start a part time job and asking to much of my 13 year old daughter to be in charge of like changing her 11 year old brother's diaper.So now the only time he is at school I am trying to work and making nothing but it is a start to try to make others to help me. I have no extended family nearby. Thurs when I attempt to cook thanksgiving dinner I will picture me being you and taking a nice walk on the beach.

Hope you enjoy! You deserve it. And I am glad to see that you can try to step away. I used to get one weekend a year like that until my Mother died. But I plan on trying something like shopping on black friday and the girls can watch him and just call me on the cell phone. Feels like separation anxiety but really not taking care of myself. That was a great post you made. this is a really hard holiday for me as every year for the last 12 years has brought serious bad luck with my son's health.

Kathy Foley

[Guest guest]

Ginny, Just wanted to say I empathize with trying to get Emma to gain weight. is 2 years 4 months and weighs 20 pounds. He actually eats quite a bit, but grows at a snail's pace. We saw the geneticist last week and she said he was not malnourished and that she didn't think a g-tube was appropriate. Same conclusion was reached about 6 months ago by our gastroenterologist. She said it's just a function of the genetic disease he has . . . It's kinda weird having a 2 year old who looks like a 9 month old baby . . .

As far as sensitivities, has sensitivity to loud noises (like parades, big crowds, that kind of thing) but likes all kinds of music. We just had an OT evaluation today for sensory integration training and she said it was a "given" that a child with the multitude of problems has will have sensory "issues."

Take care! Lori and (complex I and IV)

Re: Re: worry

, Emma is 2 years and 2 1/2 months and weighs about 22 pounds, but that goes up and down a bit. She looks like a baby - she is so thin. She gets about pretty well but she does not grow. She acts sensitive even to some soft songs. My Grandma was singing rock a bye baby to her today, and she started crying. She does that with certain music I play in the car. Yet she loves the Mozart and Bach stuff I played for her before she was born and well after birth - even though that would seem to be so much more intense, loud, commanding, etc. I just don't understand it. She is such a joy, though. We just keep pretending she is her favorite dog Nikki (my inlaws' pet cockapoo) to get her to eat Nikki snacks and hope she will continue eating more. Happy Thanksgiving, and thanks for your comments and insights. VirginiaVirginia M. Buchanan Please contact mito-owner with any problems or questions.

[Guest guest]

Lori, has all of 's thyroid/growth workup been normal?

Virginia, Emma's Mom

Virginia M. Buchanan

[Guest guest]

In a message dated 11/20/2001 8:33:44 PM Eastern Standard Time,

Ginny581@... writes:

<< , Emma is 2 years and 2 1/2 months and weighs about 22 pounds, but

that

goes up and down a bit. She looks like a baby - she is so thin. >>

Virginia;

My daughter was 25 lbs at 2.5 and no one seemed to worry. When I look at pics

now, she looks way too skinny when she was small. Her brother who is much

more affected by the disease is huge at 70 lbs and almost 7. He is about 20

lbs more than his sister who is a year younger. I find this stuff rather odd.

Michele Sullivan

Mom to Nolan (6) and Alana (5)

[Guest guest]

In a message dated 11/21/01 5:30:28 AM Pacific Standard Time,

michsull@... writes:

<< Her brother who is much

more affected by the disease is huge at 70 lbs and almost 7. He is about 20

lbs more than his sister who is a year younger. I find this stuff rather odd.

Michele Sullivan

Mom to Nolan (6) and Alana (5) >>

, who will be 11 in December, and is fully ambulatory (and suspected

mito), is 69# at 4'10 " . He is actually 40% on the weight chart, but looks

thinner because of the myopathy in his back, shoulders, chest.

Dena

[Guest guest]

Ginny, No one has suggested this to me. I'll ask next time we see the doc. Good thinking . . .

Lori

Re: Re: worry

Lori, has all of 's thyroid/growth workup been normal?Virginia, Emma's MomVirginia M. Buchanan Please contact mito-owner with any problems or questions.

[Guest guest]

, your story about Leah spitting out her food to try yours brought a smile to my face. It sounds so dear, and my Emma does that, too.

We will just keep after Emma about eating - getting her to eat a bite here and there of whatever we can tempt her with.

Her pediatric neurologist mentioned trying periactin to stimulate appetite. After hearing some of the problems others have had with lactic acidosis, etc. after trying to force the feeding issues, I am a little worried about stressing Emma's system.

I hope Leah finds some great things to enjoy on this special day.

Virginia, Emma's Mom

Virginia M. Buchanan

[Guest guest]

Lori, and Emma still seem to be "neck and neck" with one another in terms of their growth and all from when we last talked via email months ago. I hope he is medically stable and able to enjoy everything around him. Emma seems to have much more joy than pain and problems.

Happy Thanksgiving to you guys.

Virginia

Virginia M. Buchanan

[Guest guest]

I often feel like crying when Mick Jagger comes on the radio, too, but I

doubt it has anything at all to do with mito!!

Re: worry

> When my oldest son (no mito) was a baby he would cry whenever Mick

> Jager came on the radio. It took us forever to figure this out since

> he could and would react to radios in other peoples' cars at stop

> lights, etc.

> Hejust don't like some things.

> Twana

[Guest guest]

, you are so funny about Mick Jagger! I just recently "discovered" some of the old Rolling Stones stuff, and it is really good. I have not had a taste for the music until now. Perhaps our children are wiser than we are in their musical choices. I will watch to see if Emma Pie begins screaming when she hears Mick Jagger's voice.

Happy weekend.

Virginia

Virginia M. Buchanan