RE: signs of mito in older children/help please

[Guest guest]

I would not think you are overreacting. I am sure it runs through all of us, with other "healthy" children. Although my daughter is only 7, she started showing some symptoms. I knew I had to take her to the DR anyway, because she was having migraines daily, so I asked them to run some preliminary bloodwork. Luckily we live 20 minutes from CCF and Dr. Cohen. All they really need is a basic met. panel and a great one for us is the Carnitine levels. s came back normal, and I figured something would be abnormal if she did have mito so we decided not to pursue any farther. Now we do not need to worry anymore, we know she is fine. Now we focus on the real problem, stupid migraines. Best of luck.

[Guest guest]

I would not think you are overreacting. I am sure it runs through all of us, with other "healthy" children. Although my daughter is only 7, she started showing some symptoms. I knew I had to take her to the DR anyway, because she was having migraines daily, so I asked them to run some preliminary bloodwork. Luckily we live 20 minutes from CCF and Dr. Cohen. All they really need is a basic met. panel and a great one for us is the Carnitine levels. s came back normal, and I figured something would be abnormal if she did have mito so we decided not to pursue any farther. Now we do not need to worry anymore, we know she is fine. Now we focus on the real problem, stupid migraines. Best of luck.

[Guest guest]

Hi Dawn,

lies presented in her early teens.

She went from being a very active (ADHD) type kid to feeling exhausted,

sleeping up to 22 hours/day. She looked wiped out. With that she developed

the signs/symptoms of autonomic dysfunction, migraines, GI dysfunction. It

seemed to come on quite quickly when it started. Early symptoms were passing out,

nausea, headaches, dizziness, seizure-like activity (staring off into space), etc.

Joanne Kocourek, RN, CCRC

Manager of Clinical Research

The University of Chicago

Department of Radiology

signs of

mito in older children/help please

I am looking for info from any one who's

child presented in there

teens. presented at birth and I presented

in my 20s. What are

some of the first noticable signs that made you

say MMMM???

My 13 yr. old has had some unsual

things that i would probably

blow off if it weren't for and myself. He

has missed 2 days

of school this week (mon and today). He says he

feels nauseaus, and

like he is going to pass out. He looks pale and

there is no fever. I

wouldn't worry if he were throwing up, with this

flu season and all,

but he is not. He sometimes has signs of

hypoglycemia (for yrs.

now). He just seems really tired. He will

sometimes get the red

cheeks for no apparent reason. Today he has bags

under his eyes

(though had plenty of sleep). I don't want to

overreact, but how can

I not?

Any help would be appreciated...Dawn Myers

Please

contact mito-owner with any problems or questions.

[Guest guest]

Dawn,

> I am looking for info from any one who's child presented in there

>teens.

Emilie's symptoms started at age 11. The first thing that happened was

that she started crying almost every day around 5 p.m.--she would seem

really out of it and confused. Looking back, this was probably at least

partly a blood sugar issue, but I still think it's weird it started so

suddenly (I have the date of the first one written down on my calender

because it was so dramatic!) Within a couple of weeks, she started

having cyclic vomiting episodes.

Over a period of months, she added other weird symptoms, like dilated

pupils, pallor, dark circles under her eyes, hands turning purple after

eating, and flushed cheeks. Then she started having days when she seemed

unusually fatigued. Also, some days she would get limp fairly suddenly.

Other times, she just couldn't stay awake.

-- Mom to:

Emilie (17), mito--complex IV, cp, ld

Kaitlin (17), cp, asthma, a few autonomic symptoms

Ian (22) migraines

....and wife to Tim, who has a heart of gold

[Guest guest]

Dawn,

> I am looking for info from any one who's child presented in there

>teens.

Emilie's symptoms started at age 11. The first thing that happened was

that she started crying almost every day around 5 p.m.--she would seem

really out of it and confused. Looking back, this was probably at least

partly a blood sugar issue, but I still think it's weird it started so

suddenly (I have the date of the first one written down on my calender

because it was so dramatic!) Within a couple of weeks, she started

having cyclic vomiting episodes.

Over a period of months, she added other weird symptoms, like dilated

pupils, pallor, dark circles under her eyes, hands turning purple after

eating, and flushed cheeks. Then she started having days when she seemed

unusually fatigued. Also, some days she would get limp fairly suddenly.

Other times, she just couldn't stay awake.

-- Mom to:

Emilie (17), mito--complex IV, cp, ld

Kaitlin (17), cp, asthma, a few autonomic symptoms

Ian (22) migraines

....and wife to Tim, who has a heart of gold

[Guest guest]

Dawn,

> I am looking for info from any one who's child presented in there

>teens.

Emilie's symptoms started at age 11. The first thing that happened was

that she started crying almost every day around 5 p.m.--she would seem

really out of it and confused. Looking back, this was probably at least

partly a blood sugar issue, but I still think it's weird it started so

suddenly (I have the date of the first one written down on my calender

because it was so dramatic!) Within a couple of weeks, she started

having cyclic vomiting episodes.

Over a period of months, she added other weird symptoms, like dilated

pupils, pallor, dark circles under her eyes, hands turning purple after

eating, and flushed cheeks. Then she started having days when she seemed

unusually fatigued. Also, some days she would get limp fairly suddenly.

Other times, she just couldn't stay awake.

-- Mom to:

Emilie (17), mito--complex IV, cp, ld

Kaitlin (17), cp, asthma, a few autonomic symptoms

Ian (22) migraines

....and wife to Tim, who has a heart of gold

[Guest guest]

She can play varsity soccer now with accomodations - she needs to be pulled out after 8-10 minutes to she goes into lactic acidosis

Anne, Has she ever tried taking DMG (N-Dimethylglycine)? This will help reduce lactic acid build up when taken before exercise. It usually comes in subligual form, so it can be taken right before an event and is absorbed directly into the blodstream. Chelsea has been on this almost 3 years and it has significantly reduced her exercise intolerence(she gets it via gtube). Might be worth looking into, it is considered a food product by the FDA and cannot be overdosed and there are no sx of deficiency. HTH! Your daughter sounds like a wonderful person!

e, Chelsea's mom(nonspecific mito)

Dawn,

My 17 yr old started showing symptoms at age 14. Prior to that she

had a diagnosis of exercise induced asthma. Though she did not

respond very well to inhalers, no one seemed to question the

diagnosis. I sure did not.

Age 14 she decided to run cross country for highschool. She was

outstanding and on varsity her first few weeks. But what I know now

is that it pushed her over the edge from a sub clinical mito

presentation to a mito crisis.

All of a sudden she could not run anymore. She felt as if her legs

were lead. They hurt so bad at night that she was up many ngihts all

night, taking hot baths, having me massage them, taking

ibiprofin....she is an over achiever and so kept trying to run even

though she was not doing well. She became very air hungry at one meet

and they had to call 911.

Meanwhile she developed severe and chronic nausea and vomiting,

miraines, myoclonic seizures, extreme fatigue, abdominal cramps, and

inability to breathe at ngiht without 3 pillows. this all occurred

acutely within about 2 months time.

I took her to a new pulmonologist that the boy's doctor worked well

with. The first thing he said was she did not have asthma - she had

restrictive lung disease. WE put her on zantac for GE reflux which

was making everything worse, put her on topamax for seizures, zofran

for nausea, carnitine and Co Q. (her Co Q levels were severely low).

Thankfully after 6 months and reaching normalized Co Q levels she was

able to stop the topamax and rarely needed the zofran. her

restrictive l;ung disease improved to only needing 1 pillow at night.

My guess is that milder disease states show up later and are more

responsive to supplements than the kids who present in infancy like

my boys.

She can play varsity soccer now with accomodations - she needs to be

pulled out after 8-10 minutes to she goes into lactic acidosis. She

has developed hypopituitary issues just like me and her brothers and

is on thyroid hormone and steroids for that. She still has days when

she has significant fatigue and nausea but all in all her quality of

life is wonderful and she is dealing with her illness just fine. I

hope that encourages you a little.

When she first went into crisis I was very depressed but now I feel

that it is just something she has and I am very proud of how she is

learning to live with it and adjust her life as needed without losing

her joy and spunk. It did take her about a year to come to terms

with it but her doctors were very open and dealt with her primarily

and me secondly. They were honest with her but very affirming and

gave her a lot of hope. I would bet your teen has a lot of fear like

my daughter did that she would end up like her very sick

brothers....it was essential to have doctors that were willing to

discuss that with her, be sensitive and not give her too much

information but also be honest about what was happenning. And the

thing I am most greatful for was that the doctors as a group decided

that they would not place any limits on her. Thouhg it was clear

that her sports were making her very sick they also recognized how

important sports were to her identity and how letahl it would be if

they stripped that from her before she was ready. In time she

realized that sporst were making her sick and on her own she went to

her coach and told him what was wrong with her and asked him to pull

her out after 7-8 min. I can not imagine how difficult this was for

my daughter to do...but she did it of her own choice and i think it

has made all the diffeence in how she is growing up and learning to

live with this disease rather than be jailed by it.

Anne

Please contact mito-owner with any problems or questions.

[Guest guest]

Hi e,No I have never heard of DMG before. Do you know any good web sources of info off the top of your head. Otherwise I can just do a search. I am always interested to learn about new things. How old is Chelsea by the way? Thanks,Annewww.caringbridge.org/wi/zachsam

[Guest guest]

Hi e,No I have never heard of DMG before. Do you know any good web sources of info off the top of your head. Otherwise I can just do a search. I am always interested to learn about new things. How old is Chelsea by the way? Thanks,Annewww.caringbridge.org/wi/zachsam