question about the unknown

June 10, 2004

First of all, no need to apologize...what you are asking is what everyone wonders. First off remember the person telling you this is not a MITO specialist and so his information is going to be a little scewed and secondly, we just dont' have the statistics to back up his theories or anyone else's for that matter.

If you went to the conference you would hear this to be said: You could take 10 kids with Mitochondrial Myopathy (Complex I is the most common, so we will say they all have that) and put them in a room...they would all look completely different! Even if you narrowed it down to them all being the same age and became symptomatic at the same time, they would still look completely different! Because its a disease in the cells...the bad cells work differently in each patient.

I know when we talked on the phone (and please know you can call me anytime) that I told you you would have to look at him as an individual and how he is doing at the moment. I know for us...for a while we lived month by month...then week by week...then day by day...then moment by moment...I really think your gut will tell you more than any doctor or other parent can.

hang in there you guys

deb...mom to three great adopted kids... (07.04.96-05.26.03) with Mitochondrial Disease, Gaige age 5 with High Functioning Autism & dysfluency and Bliss age 3 with very very mild Cerebral Palsy.http://www.heartliftersgallery.com/http://www.lifeofloveproject.org/

June 10, 2004

Grace has a non specific mito, but all four chains are affected and mutated. She became symptomatic at 3 weeks old (but had low blood sugar and jaundice at birth). She was diagnosed a few weeks after her 1st birthday. We, also, have no idea as to how this disease will progress on her. Dr. Cohen said we will just have to wait and see. As of right now she is doing remarkably better since being on the cocktail. We do, however, know that with every virus there is the risk of a major setback. I am very worried today because yesterday was her 2nd birthday, and she has a cold. The little one was in bed by 3pm. She did wake up and ate dinner at 8pm, but was not interested in anything to celebrate her birthday, and went back to bed. It worries you when a two year old sleeps through her birthday. I guess this is the life we must live dealing with this disease. We are going to wait until Sat. and have a cookout for her, hopefully she will feel better then.

Most of all remember that everyone with this disease does differently. Some do quite well, and some do not. I would not focus too much on the "what if's", cherish each day. Be happy when he is well. Best wishes.

June 10, 2004

I have a question actually my hubby has been asking me to ask and I

hope noone gets offended. I am wondering if any of the kids out there

have mito myopothy and how old are they and when were they dx. The

doc keeps telling us that statistics show its not a good outlook but

wont give us any kind of idea what our time line is. we would like to

see him go for years and years as would everyone with there's I'm

sure. But I guess I just wonder how this progressis as Caeden seems

to be so different than a year ago. I am hoping this is the worst it

gets. Again I hope I didn't hurt any feelings or sound uncaring.

(mito myop NOS)

June 12, 2004

Hi Jennifier:

My daughter, Leah, is still officially undiagnosed. Just mitochondrial

myopathy. She is 6 years old. I guess our metabolic doctor says the same

thing. You don't know the time line with each child. Yes there is no cure

and the outcome isn't always pleasant. So my husband and I take it each day

at a time. Our whole family is involved with Leah. Her grandmothers take

care of her at times, her cousins play with her and even babysit her. They

are all involved with knowing her progress and her doctor appointments. Leah

just got back from having eye surgery, tubes put in and another muscle

biopsy. She came through just fine. We sort of joked that it was her 6000

mile checkup in the OR because it took 3 different doctors in the outpatient

surgery to do these items. I asked if they gave her a pedicure and

manicure. The eye doctor said he did check to see if she had any loose teeth

yet. But the doctors all listened to us and were very cautious with her

going under and monitored her very closely. Anyway, they are sending her

muscle to town for a DNA check to see if anything is a miss. We worry

about illness with her, but don't always isolate her; as of yet. It is

always in the back of my mind the what if and when could it happen. But we

treat her as " average " as possible. Not even all the mito docs can predict

what is going to happen to your child. Our ped is always saying how good

Leah is and so neat at what she is doing. So your hubby has a good question

and don't feel bad about asking. That is what this group is here for. To

help answer questions especially from people who are new to this group and

learning right along with us. There may be some bad days, but with us at

least Leah has many more good days than bad days. Her bad days consist of

temper tantrums when she is mad about something. Like she hated the iv and

pulse monitor on her and that is why she was crying to much in the recovery

room. As soon as the nurse took it out she calmed down and was content

again. She just couldn't tell us in words that she hated that thing on her

finger. Celebrate the good times and if your child doesn't regress hey break

out the champagne. I keep wondering myself if Leah will regress. She is

making neat gains right now and we are truly excited about them. Tell your

husband thank you for asking the question and for taking such an interest in

his child. Some times its frightening to accept a diagnosis and try to move

on. Its so, so hard. Take care.

Nerenhausen

mom to Leah

jjfrost4 wrote:

> I have a question actually my hubby has been asking me to ask and I

> hope noone gets offended. I am wondering if any of the kids out there

> have mito myopothy and how old are they and when were they dx. The

> doc keeps telling us that statistics show its not a good outlook but

> wont give us any kind of idea what our time line is. we would like to

> see him go for years and years as would everyone with there's I'm

> sure. But I guess I just wonder how this progressis as Caeden seems

> to be so different than a year ago. I am hoping this is the worst it

> gets. Again I hope I didn't hurt any feelings or sound uncaring.

>

> (mito myop NOS)

>

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

>

June 13, 2004

, I struggle with this question all the time. I too worry about

seeming uncaring when I ask about lifespan issues. I guess some of us feel

the need to plan and know more than others. None of our doctors have given

us any idea what to expect even when asked directly.

has three complexes involved with no activity in complex I and less

than 5 % in complex IV. He has not actually regressed since infancy and

continues to make very minimal developmental progress. However, he does

continue to be a generally sickly child--he basically goes from one virus to

the next and misses about a third of school. He also has very poor weight

gain. He is turning 5 in July and weighed only 29 pounds at his last visit.

While there are no feeding tubes or seizures or anything really critical, I

look at him as a layperson and mom and don't see how he could thrive into

adulthood.

I just lost my father at age 73 and this brought the whole lifespan issue up

again. My father was pretty healthy and had just had a perfect EKG at his

physical. He died the next day of a heart attack if you can believe that.

I am planning to do some planning so that if the unthinkable were to occur,

I would know what to do, i.e. my husband and I will make decisions about

cemetary location and funeral arrangements. I also plan to do the make-a-

wish trip in the next year.

This is just so difficult. No parent should have to think about these

things. I hope that by doing some planning, I will be free to enjoy every

moment with him with decreased anxiety.

I hope the best for you. Take care, Lori and (almost 5, complexes I

and IV)