Daughter recently Diagnosed with Mito Disorder - Complex I & IV

[Guest guest]

Hi from Canada. Just thought I'd join to gain some insight and

support from people/families going through the same thing. My name

is Suzette, I am married to a wonderful, hard working man with two

girls - Kayla (14) and (11). Kayla was diagnosed within the

last year but it is believed that she has had this disorder since

birth. It has been a trying year, still trying to get through

everything and accessing as much help as we can. This year has ended

on a good note though, Kayla was just granted a " Wish " and we will be

going to Disneyland next July...we all can't wait.

My question to everyone with this disorder is, how is your appetite?

Please let me know if any of you are affected with little or no

appetite and what kinds of things you do to keep it up and to keep

the weight on.

Thank you for your time and look forward to reading your responses.

)

[Guest guest]

Hi from Canada. Just thought I'd join to gain some insight and

support from people/families going through the same thing. My name

is Suzette, I am married to a wonderful, hard working man with two

girls - Kayla (14) and (11). Kayla was diagnosed within the

last year but it is believed that she has had this disorder since

birth. It has been a trying year, still trying to get through

everything and accessing as much help as we can. This year has ended

on a good note though, Kayla was just granted a " Wish " and we will be

going to Disneyland next July...we all can't wait.

My question to everyone with this disorder is, how is your appetite?

Please let me know if any of you are affected with little or no

appetite and what kinds of things you do to keep it up and to keep

the weight on.

Thank you for your time and look forward to reading your responses.

)

[Guest guest]

Hi. Sorry you have to be here but welcome to the group.

Sheldon (3) had a very poor appetite until he started on

Prevacid. He gained no weight for 6 months and has gained 2 pounds

since starting on Prevacid for reflux two months ago. I think it was

hurting too much to eat. Pedia Sure also seems to help him keep weight

on.

Hi from Canada. Just thought

I'd join to gain some insight and

support from people/families going through the same thing. My

name

is Suzette, I am married to a wonderful, hard working man with two

girls - Kayla (14) and (11). Kayla was diagnosed within

the

last year but it is believed that she has had this disorder since

birth. It has been a trying year, still trying to get

through

everything and accessing as much help as we can. This year has

ended

on a good note though, Kayla was just granted a " Wish " and

we will be

going to Disneyland next July...we all can't wait.

My question to everyone with this disorder is, how is your

appetite?

Please let me know if any of you are affected with little or no

appetite and what kinds of things you do to keep it up and to keep

the weight on.

Thank you for your time and look forward to reading your

responses.

)

Please contact mito-owner with any problems or

questions.

Yahoo!

Groups Sponsor

ADVERTISEMENT

[Guest guest]

Hi. Sorry you have to be here but welcome to the group.

Sheldon (3) had a very poor appetite until he started on

Prevacid. He gained no weight for 6 months and has gained 2 pounds

since starting on Prevacid for reflux two months ago. I think it was

hurting too much to eat. Pedia Sure also seems to help him keep weight

on.

Hi from Canada. Just thought

I'd join to gain some insight and

support from people/families going through the same thing. My

name

is Suzette, I am married to a wonderful, hard working man with two

girls - Kayla (14) and (11). Kayla was diagnosed within

the

last year but it is believed that she has had this disorder since

birth. It has been a trying year, still trying to get

through

everything and accessing as much help as we can. This year has

ended

on a good note though, Kayla was just granted a " Wish " and

we will be

going to Disneyland next July...we all can't wait.

My question to everyone with this disorder is, how is your

appetite?

Please let me know if any of you are affected with little or no

appetite and what kinds of things you do to keep it up and to keep

the weight on.

Thank you for your time and look forward to reading your

responses.

)

Please contact mito-owner with any problems or

questions.

Yahoo!

Groups Sponsor

ADVERTISEMENT

[Guest guest]

I have a daughter, age 6 1/2, with possible diagnosis of mitochondrial.

Her appetite goes up and down. One day she will eat a lot and a few

days later not. One doctor that spoke at a support group of mine in

Wisconsin stated that for some reason the appetite can go in waves just

like a person with cancer. We also notice that when Leah is going to

get ill she tends to eat less. We use a product called Polycose that

adds calories to her rice milk and when she was on baby food mixed the

powder with her food. Because Leah is nonverbal we need to watch her

more closely if she goes several hours and hasn't " voiced " that she is

hungry or thirsty. And remember even the average child isn't always

hungry some days and will tend to eat less on others and then make up

for on another day. Or may be during the evening with the last meal and

a snack later. You can always meet with a dietician to see if your

child is getting enough calories per day. When we see our dietician she

always has us fill out a three day form. But we usually do it for a

week to two weeks because Leah's appetites varies so much from day to

day. We found out just recently that Leah is getting the calories she

needs even though I thought she wasn't eating enough. But her evening

meal was her biggest meal of the day. So I was mildly surprised and

relieved to know she is getting the calories she needs.

Nerenhausen

mom to Leah

cestmoi1164 wrote:

>

>Hi from Canada. Just thought I'd join to gain some insight and

>support from people/families going through the same thing. My name

>is Suzette, I am married to a wonderful, hard working man with two

>girls - Kayla (14) and (11). Kayla was diagnosed within the

>last year but it is believed that she has had this disorder since

>birth. It has been a trying year, still trying to get through

>everything and accessing as much help as we can. This year has ended

>on a good note though, Kayla was just granted a " Wish " and we will be

>going to Disneyland next July...we all can't wait.

>

>My question to everyone with this disorder is, how is your appetite?

>

>Please let me know if any of you are affected with little or no

>appetite and what kinds of things you do to keep it up and to keep

>the weight on.

>

>Thank you for your time and look forward to reading your responses.

>

>)

>

>

>

>

>

>

>

>

>

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

>

[Guest guest]

I have a daughter, age 6 1/2, with possible diagnosis of mitochondrial.

Her appetite goes up and down. One day she will eat a lot and a few

days later not. One doctor that spoke at a support group of mine in

Wisconsin stated that for some reason the appetite can go in waves just

like a person with cancer. We also notice that when Leah is going to

get ill she tends to eat less. We use a product called Polycose that

adds calories to her rice milk and when she was on baby food mixed the

powder with her food. Because Leah is nonverbal we need to watch her

more closely if she goes several hours and hasn't " voiced " that she is

hungry or thirsty. And remember even the average child isn't always

hungry some days and will tend to eat less on others and then make up

for on another day. Or may be during the evening with the last meal and

a snack later. You can always meet with a dietician to see if your

child is getting enough calories per day. When we see our dietician she

always has us fill out a three day form. But we usually do it for a

week to two weeks because Leah's appetites varies so much from day to

day. We found out just recently that Leah is getting the calories she

needs even though I thought she wasn't eating enough. But her evening

meal was her biggest meal of the day. So I was mildly surprised and

relieved to know she is getting the calories she needs.

Nerenhausen

mom to Leah

cestmoi1164 wrote:

>

>Hi from Canada. Just thought I'd join to gain some insight and

>support from people/families going through the same thing. My name

>is Suzette, I am married to a wonderful, hard working man with two

>girls - Kayla (14) and (11). Kayla was diagnosed within the

>last year but it is believed that she has had this disorder since

>birth. It has been a trying year, still trying to get through

>everything and accessing as much help as we can. This year has ended

>on a good note though, Kayla was just granted a " Wish " and we will be

>going to Disneyland next July...we all can't wait.

>

>My question to everyone with this disorder is, how is your appetite?

>

>Please let me know if any of you are affected with little or no

>appetite and what kinds of things you do to keep it up and to keep

>the weight on.

>

>Thank you for your time and look forward to reading your responses.

>

>)

>

>

>

>

>

>

>

>

>

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

>

[Guest guest]

Hi , thank you for your response to my post about my daughter

Kayla's appetite. I guess I also should have included the thought on

her lack of weight gain. She eats but just can't keep the weight

on. Kayla is 14, 5'2 and has weighed only 74 lbs for the past 2

years. She is chronic anemic, but not iron deficient. She has chest

pains, phlegm in the chest, asthma-like symptoms and very weak if she

over exerts herself. Kayla did her best at walking with regular

breaks up until September 2004 when her neurologist recommended we

get her a wheelchair. Kayla mainly uses the wheelchair at school as

she is too weak to chance being knocked over and can't get up on her

own. She has lost all muscle tone on her left side from her hip down

and this is since her muscle biopsy in January 2004. You know when I

read all the postings I can so sympathize with each and everyone of

you and it give me some comfort know that there are other families

out there who are going through the same thing as we do. It is

astonishing how may are out there. I still don't know what we are up

against, what turn, if any, this will take on Kayla.......I just pray

it will take a turn for the better. I do my best with her to keep

her going, keep her eating; some days are harder than others. God

bless us all and especially our little ones!!!! Good nite. )

>

> >

> >Hi from Canada. Just thought I'd join to gain some insight and

> >support from people/families going through the same thing. My

name

> >is Suzette, I am married to a wonderful, hard working man with two

> >girls - Kayla (14) and (11). Kayla was diagnosed within

the

> >last year but it is believed that she has had this disorder since

> >birth. It has been a trying year, still trying to get through

> >everything and accessing as much help as we can. This year has

ended

> >on a good note though, Kayla was just granted a " Wish " and we will

be

> >going to Disneyland next July...we all can't wait.

> >

> >My question to everyone with this disorder is, how is your

appetite?

> >

> >Please let me know if any of you are affected with little or no

> >appetite and what kinds of things you do to keep it up and to keep

> >the weight on.

> >

> >Thank you for your time and look forward to reading your responses.

> >

> >)

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >Please contact mito-owner with any problems or

questions.

> >

[Guest guest]

My daughter Asenath seems to have appetite problems and has had this issue

since she was a toddler. We ended up needing to place a G-tube for her as

she became so malnourished. Depending on the person who is dealing with the

issue and how much it is affecting them, many options may help. Feeding

therapy, NG-tube, G-tube, adding Pediasure to the diet, finding healthier

alternatives that they may prefer to eat, etc. are a couple things to try.

If the person is losing weight, not gaining, or is compromised in this area

though, take it very seriously and seek help. Proper nutrition is needed to

keep the energy levels up to keep the child healthy, especially considering

the lower energy production levels of a Mito person.

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)

Daughter recently Diagnosed with Mito Disorder - Complex I &

IV

>

>

>

> Hi from Canada. Just thought I'd join to gain some insight and

> support from people/families going through the same thing. My name

> is Suzette, I am married to a wonderful, hard working man with two

> girls - Kayla (14) and (11). Kayla was diagnosed within the

> last year but it is believed that she has had this disorder since

> birth. It has been a trying year, still trying to get through

> everything and accessing as much help as we can. This year has ended

> on a good note though, Kayla was just granted a " Wish " and we will be

> going to Disneyland next July...we all can't wait.

>

> My question to everyone with this disorder is, how is your appetite?

>

> Please let me know if any of you are affected with little or no

> appetite and what kinds of things you do to keep it up and to keep

> the weight on.

>

> Thank you for your time and look forward to reading your responses.

>

> )

>

>

>

>

>

>

>

>

>

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

>