Re: Abby

[Guest guest]

It's all very over whelming isn't it Kass?

You know of course that all of those things can be mito related but could be

normal variations for any child. I don't think you are worrying too much -

I think you are being realistic given the family history.

When Sammy was born he became symptomatic within weeks of birth and the

symptoms were far more pronounced that Zachary's had ever been at the same

age and it all progressed so much faster. I had no chance to ever be in

denial with him. With my Abby who , she was mildly symptomatic since birth

and we always knew she had a very mild form of whatever the nameless disease

was that the boys had. When the boys were diagnosed she was diagnosed along

with them and I felt no shock.

However, with my older daughter, it has been much like what you are seeing

with Abby. She is a bright, beautiful, athletic, teenage girl who has never

been hospitalized since she was 6 weeks old. I was so consumed with my boys

that any problem she had, I was so eager to believe was just a normal kid

thing. And because none of it has been very severe it was easy to believe

that. I worried about it in the middle of the night and then just as quickly

pushed those worries aside. This past Fall I was finally unable to do that

when she very clearly became symptomatic and needed medical help.She has a

presumed diagnosis now and it has been on the of the hardest things I have

had to accept. She really is doing fairly well now that her issues are being

addressed- but I guess it comes down to the fact that she was my one that I

counted on to be okay and it just broke my heart to accept that was not the

case.

The good news is there are treatments for migraines and reflux and seizure

activity and many of her other symptoms. I know there will be for your

little girl too whether her problems are due to mito or not. And I do

believe that our children that express so mildly often are the ones who

respond best to treatment.

Unfortunately life has made us all more cautious with these " typical "

childhood issues because we know what they can mean. That is our reality.

But think about it this way - if you had never heard the word mito you would

be concerned about her just the same and taking her for help. So take her

for the help and don't worry about being over worried. You have an advantage

here of intervening before things potentially get worse. You have doctors

that you seem to have a good relationship with and will listen and get her

the help she needs sooner versus later. Use that to her advantage.

Anne

Abby

I've been digesting this appointment

> for a couple of weeks now, trying to make heads or tails of it, and I

> just don't know what to think anymore. Any wisdom you can impart would

> be welcomed.

>

[Guest guest]

It's all very over whelming isn't it Kass?

You know of course that all of those things can be mito related but could be

normal variations for any child. I don't think you are worrying too much -

I think you are being realistic given the family history.

When Sammy was born he became symptomatic within weeks of birth and the

symptoms were far more pronounced that Zachary's had ever been at the same

age and it all progressed so much faster. I had no chance to ever be in

denial with him. With my Abby who , she was mildly symptomatic since birth

and we always knew she had a very mild form of whatever the nameless disease

was that the boys had. When the boys were diagnosed she was diagnosed along

with them and I felt no shock.

However, with my older daughter, it has been much like what you are seeing

with Abby. She is a bright, beautiful, athletic, teenage girl who has never

been hospitalized since she was 6 weeks old. I was so consumed with my boys

that any problem she had, I was so eager to believe was just a normal kid

thing. And because none of it has been very severe it was easy to believe

that. I worried about it in the middle of the night and then just as quickly

pushed those worries aside. This past Fall I was finally unable to do that

when she very clearly became symptomatic and needed medical help.She has a

presumed diagnosis now and it has been on the of the hardest things I have

had to accept. She really is doing fairly well now that her issues are being

addressed- but I guess it comes down to the fact that she was my one that I

counted on to be okay and it just broke my heart to accept that was not the

case.

The good news is there are treatments for migraines and reflux and seizure

activity and many of her other symptoms. I know there will be for your

little girl too whether her problems are due to mito or not. And I do

believe that our children that express so mildly often are the ones who

respond best to treatment.

Unfortunately life has made us all more cautious with these " typical "

childhood issues because we know what they can mean. That is our reality.

But think about it this way - if you had never heard the word mito you would

be concerned about her just the same and taking her for help. So take her

for the help and don't worry about being over worried. You have an advantage

here of intervening before things potentially get worse. You have doctors

that you seem to have a good relationship with and will listen and get her

the help she needs sooner versus later. Use that to her advantage.

Anne

Abby

I've been digesting this appointment

> for a couple of weeks now, trying to make heads or tails of it, and I

> just don't know what to think anymore. Any wisdom you can impart would

> be welcomed.

>

[Guest guest]

Hey there!

We too have these problems with our 12. We have yet to find anything that works. cant take Benadryl because it makes her tics so bad she can't breathe. has alot of bad pain at night that also keeps her awake. We tried Neurontin but she could not take it because of the taste. We mixed it with everything everyone here on the list suggested and then some but no luck, Now we are trying Elavil, but it is a very small dose, increasing it every two weeks. I just hate for her to be hurting and dealing with all this for months trying to find out if its gonna work. also has the bad/aggressive behaviors when she is tired.

We have learned to make her come in earlier in the afternoon and get a bath before supper. This helps. Ususally she feels really nausiated after she eats and is just to tired to do anything.

No day is the same in our neck of the woods, we never know what we are gonna wake up to.

Best of luck to you and if you get some answers or med. recomendations please share them.

Horsley

Mom to 12

Brittney 16

leehorsley@...

Re: Abby

We discussed her sleep issues (being unable to get to sleep before 2-3am> without Benadryl to help), what appears to be reflux behaviors happening> for the first couple of hours after she finally falls asleep, and> difficult behaviors that were exacerbated when she is not getting enough> sleep; her feet going to "sleep" almost daily and taking forever to get> them to "wake up"Hi Kass,Your post caught my attention. I have an almost 3 yr old son (he'll be 3 onJune 25th) named Jareb. He has exactly those symptoms you describe above.He wakes up after an hour or two of sleep, crying and saying he has to throwup. He cries for an hour or more sometimes before I can get him to sleep.We've never tried benadryl but mabye we will now. And also, his feet andlegs do go to sleep a lot! It just seems so strange to have another parentreport the same combination of symptoms. He also seems to have pains in hislegs (muscle pains I assume) that bother him quite often. I have questionedmito in him and I do worry constantly, but so far he is basically healthyand I haven't seen the need to pursue it. The reflux behavior at nightcomes and goes. He'll do it every night for a couple of weeks, then not atall for a month or so. Strange. . . Well, just thought I'd share. from MaineMom to: Johanna (6 yrs), Jareb (2 yrs), and Jessalyn age 8 monthsw/mitochondrial myopathy, fundo and g-tube, severe GI pain of unknownorigin, developmental delay, sensory integration issues, scoliosis, and apossible seizure disorderPlease contact mito-owner with any problems or questions.

[Guest guest]

Hey there!

We too have these problems with our 12. We have yet to find anything that works. cant take Benadryl because it makes her tics so bad she can't breathe. has alot of bad pain at night that also keeps her awake. We tried Neurontin but she could not take it because of the taste. We mixed it with everything everyone here on the list suggested and then some but no luck, Now we are trying Elavil, but it is a very small dose, increasing it every two weeks. I just hate for her to be hurting and dealing with all this for months trying to find out if its gonna work. also has the bad/aggressive behaviors when she is tired.

We have learned to make her come in earlier in the afternoon and get a bath before supper. This helps. Ususally she feels really nausiated after she eats and is just to tired to do anything.

No day is the same in our neck of the woods, we never know what we are gonna wake up to.

Best of luck to you and if you get some answers or med. recomendations please share them.

Horsley

Mom to 12

Brittney 16

leehorsley@...

Re: Abby

We discussed her sleep issues (being unable to get to sleep before 2-3am> without Benadryl to help), what appears to be reflux behaviors happening> for the first couple of hours after she finally falls asleep, and> difficult behaviors that were exacerbated when she is not getting enough> sleep; her feet going to "sleep" almost daily and taking forever to get> them to "wake up"Hi Kass,Your post caught my attention. I have an almost 3 yr old son (he'll be 3 onJune 25th) named Jareb. He has exactly those symptoms you describe above.He wakes up after an hour or two of sleep, crying and saying he has to throwup. He cries for an hour or more sometimes before I can get him to sleep.We've never tried benadryl but mabye we will now. And also, his feet andlegs do go to sleep a lot! It just seems so strange to have another parentreport the same combination of symptoms. He also seems to have pains in hislegs (muscle pains I assume) that bother him quite often. I have questionedmito in him and I do worry constantly, but so far he is basically healthyand I haven't seen the need to pursue it. The reflux behavior at nightcomes and goes. He'll do it every night for a couple of weeks, then not atall for a month or so. Strange. . . Well, just thought I'd share. from MaineMom to: Johanna (6 yrs), Jareb (2 yrs), and Jessalyn age 8 monthsw/mitochondrial myopathy, fundo and g-tube, severe GI pain of unknownorigin, developmental delay, sensory integration issues, scoliosis, and apossible seizure disorderPlease contact mito-owner with any problems or questions.

[Guest guest]

In a message dated 6/1/02 11:15:47 PM Pacific Daylight Time,

juhlmann@... writes:

<< The good news is there are treatments for migraines and reflux and seizure

activity and many of her other symptoms. I know there will be for your

little girl too whether her problems are due to mito or not. And I do

believe that our children that express so mildly often are the ones who

respond best to treatment.

>>

Anne, I must echo your excellent information. While was sick a lot

as a baby, toddler, preschooler with lots of ear, sinus infections,

pneumonias, " asthma " , after his fundoplication for reflux when he was 4, he

got much better. Sure, his asthma still flared up and he vomited easily when

sick with a virus, but lots of kids do that. He's very, very bright, tall

for his age, athletic. I thought his mood swings (not serious, but

challenging) were just his personality. (I read and reread The Strong Willed

Child book by Dobson frequently!) Then, at age 9 1/2, last year,

started getting these horrendous migraine type headaches with vomiting. His

energy level decreased over the year...he just wasn't feeling good. When

was diagnosed with KUD (ketone utilization disorder), was

then tested also in February. His organic acids were way off and he was

started on treatment. Then, finally, a month ago, Carnitor was added in.

Voila! No more headaches, lots more energy, and he even has a chance of

making the All Star 9/10 year old Little League team in our small town. He

is on several meds daily, he is on a strictly controlled metabolic diet, but

he functions well and remains at the top of his class academically. From

what I understand with mito, as with well as with some of the OAs (organic

acidemias) and other metabolic/mito overlapping disorders, there can be a

wide variance on the spectrum of presentation. I've seen totally different

levels of that in our own family. na hasn't been tested, but I

wouldn't be surprised if she doesn't have a very mild form (she already has a

cataract, asthma type illness, GERD, muscle cramps), but she self controls

her diet and she just doesn't get sick very often. I'm hoping that doesn't

change as she gets older, like it did with , but I'm hopeful...day by

day. :-)

My prayers are with you for the best evaluation/care for Abby and for peace

of mind for such a caring mom that you are....smile.

Hugs,

Dena

[Guest guest]

In a message dated 6/1/02 11:15:47 PM Pacific Daylight Time,

juhlmann@... writes:

<< The good news is there are treatments for migraines and reflux and seizure

activity and many of her other symptoms. I know there will be for your

little girl too whether her problems are due to mito or not. And I do

believe that our children that express so mildly often are the ones who

respond best to treatment.

>>

Anne, I must echo your excellent information. While was sick a lot

as a baby, toddler, preschooler with lots of ear, sinus infections,

pneumonias, " asthma " , after his fundoplication for reflux when he was 4, he

got much better. Sure, his asthma still flared up and he vomited easily when

sick with a virus, but lots of kids do that. He's very, very bright, tall

for his age, athletic. I thought his mood swings (not serious, but

challenging) were just his personality. (I read and reread The Strong Willed

Child book by Dobson frequently!) Then, at age 9 1/2, last year,

started getting these horrendous migraine type headaches with vomiting. His

energy level decreased over the year...he just wasn't feeling good. When

was diagnosed with KUD (ketone utilization disorder), was

then tested also in February. His organic acids were way off and he was

started on treatment. Then, finally, a month ago, Carnitor was added in.

Voila! No more headaches, lots more energy, and he even has a chance of

making the All Star 9/10 year old Little League team in our small town. He

is on several meds daily, he is on a strictly controlled metabolic diet, but

he functions well and remains at the top of his class academically. From

what I understand with mito, as with well as with some of the OAs (organic

acidemias) and other metabolic/mito overlapping disorders, there can be a

wide variance on the spectrum of presentation. I've seen totally different

levels of that in our own family. na hasn't been tested, but I

wouldn't be surprised if she doesn't have a very mild form (she already has a

cataract, asthma type illness, GERD, muscle cramps), but she self controls

her diet and she just doesn't get sick very often. I'm hoping that doesn't

change as she gets older, like it did with , but I'm hopeful...day by

day. :-)

My prayers are with you for the best evaluation/care for Abby and for peace

of mind for such a caring mom that you are....smile.

Hugs,

Dena

[Guest guest]

In a message dated 6/2/02 5:41:43 AM Pacific Daylight Time,

rebeccap@... writes:

<< He has exactly those symptoms you describe above.

He wakes up after an hour or two of sleep, crying and saying he has to throw

up. He cries for an hour or more sometimes before I can get him to sleep.

We've never tried benadryl but mabye we will now. And also, his feet and

legs do go to sleep a lot! It just seems so strange to have another parent

report the same combination of symptoms. He also seems to have pains in his

legs (muscle pains I assume) that bother him quite often. >>

,

I would ask your doctor to do urinary organic acid testing when your son is

sick next time. It is only valid if he is sick, from what I understand!!!

These symptoms are also very much like what my boys experienced, and others

with organic acidemias do also. The OAs and mito have a lot of overlaps. In

fact, my boys carry the diagnosis of " ketone utilization disorder, possible

mitochondrial disorder. "

Dena

[Guest guest]

In a message dated 6/2/02 8:31:47 AM Pacific Daylight Time,

leehorsley@... writes:

<< also has the bad/aggressive behaviors when she is tired. >>

,

Have you asked your doctor about trying on Carnitor? Or, is she

already on it? I ask, because I asked for a trial of Carnitor for

after many on the OA listserv (and I think on this list as well) posted that

Carnitor really, really helped with mood swings. Well, within 72 hours of

being on the Carnitor, his mood swings totally disappeared and have

remained " gone. " It's been a wonderful " side effect. " :-) Also, from what

I understand, even if the serum carnitine levels are normal (as they were

with ), that the muscle/tissue levels can be deficient. 's

muscle cramps/pain, fatigue also went away after starting the Carnitor.

Dena

[Guest guest]

Hi Kass,

I opened the Mito mail to read this this morning (I read from the web

so I don't see all the Mito mail). I just wanted to send you hugs

and say how much you are loved by so many people.

Of course this newest develpment with Abby must be very difficult for

you. I sincerely hope that any testing done on her proves that all

this was only a false alarm and the big question mark can be

removed.

I'm glad you are so happy with your neuro there though.

Hugs.

[Guest guest]

Hi Kass,

I opened the Mito mail to read this this morning (I read from the web

so I don't see all the Mito mail). I just wanted to send you hugs

and say how much you are loved by so many people.

Of course this newest develpment with Abby must be very difficult for

you. I sincerely hope that any testing done on her proves that all

this was only a false alarm and the big question mark can be

removed.

I'm glad you are so happy with your neuro there though.

Hugs.

[Guest guest]

We discussed her sleep issues (being unable to get to sleep before 2-3am

> without Benadryl to help), what appears to be reflux behaviors happening

> for the first couple of hours after she finally falls asleep, and

> difficult behaviors that were exacerbated when she is not getting enough

> sleep; her feet going to " sleep " almost daily and taking forever to get

> them to " wake up "

Hi Kass,

Your post caught my attention. I have an almost 3 yr old son (he'll be 3 on

June 25th) named Jareb. He has exactly those symptoms you describe above.

He wakes up after an hour or two of sleep, crying and saying he has to throw

up. He cries for an hour or more sometimes before I can get him to sleep.

We've never tried benadryl but mabye we will now. And also, his feet and

legs do go to sleep a lot! It just seems so strange to have another parent

report the same combination of symptoms. He also seems to have pains in his

legs (muscle pains I assume) that bother him quite often. I have questioned

mito in him and I do worry constantly, but so far he is basically healthy

and I haven't seen the need to pursue it. The reflux behavior at night

comes and goes. He'll do it every night for a couple of weeks, then not at

all for a month or so. Strange. . . Well, just thought I'd share.

from Maine

Mom to: Johanna (6 yrs), Jareb (2 yrs), and Jessalyn age 8 months

w/mitochondrial myopathy, fundo and g-tube, severe GI pain of unknown

origin, developmental delay, sensory integration issues, scoliosis, and a

possible seizure disorder

[Guest guest]

We discussed her sleep issues (being unable to get to sleep before 2-3am

> without Benadryl to help), what appears to be reflux behaviors happening

> for the first couple of hours after she finally falls asleep, and

> difficult behaviors that were exacerbated when she is not getting enough

> sleep; her feet going to " sleep " almost daily and taking forever to get

> them to " wake up "

Hi Kass,

Your post caught my attention. I have an almost 3 yr old son (he'll be 3 on

June 25th) named Jareb. He has exactly those symptoms you describe above.

He wakes up after an hour or two of sleep, crying and saying he has to throw

up. He cries for an hour or more sometimes before I can get him to sleep.

We've never tried benadryl but mabye we will now. And also, his feet and

legs do go to sleep a lot! It just seems so strange to have another parent

report the same combination of symptoms. He also seems to have pains in his

legs (muscle pains I assume) that bother him quite often. I have questioned

mito in him and I do worry constantly, but so far he is basically healthy

and I haven't seen the need to pursue it. The reflux behavior at night

comes and goes. He'll do it every night for a couple of weeks, then not at

all for a month or so. Strange. . . Well, just thought I'd share.

from Maine

Mom to: Johanna (6 yrs), Jareb (2 yrs), and Jessalyn age 8 months

w/mitochondrial myopathy, fundo and g-tube, severe GI pain of unknown

origin, developmental delay, sensory integration issues, scoliosis, and a

possible seizure disorder

[Guest guest]

KAss,

I am sorry that I can't be more helpful but I can sympathize. When

our baby Rebekah had her skin biopsy we were told by Dr. Roe at

Baylor that there was " absolutely, positively no way that Rebekah has

what Isabelle has. " Then we were re-informed by Dr. Whiteman at Mayo

not to get so sure because unless she has gone through a metabolic

stressful situation and tested negative at that time then we can't be

sure. Anyway, she is 16-months and never been seriously ill enough

to cause metabolic stress. But I watch her everyday and say " oh,

that looks like Isa " or " That is something Isa does when she

is " off " " I just wanted you to know that I am completely with you on

this.

As for developmentally Isabelle is right on or even ahead in some

areas. Her speech is poor but not bad enoough to qualify for therapy

and she does have a known metabolic disorder.

Sorry if this isn't more comforting.

See you soon!

Sharon mom to ISabelle and Rebekah

[Guest guest]

KAss,

I am sorry that I can't be more helpful but I can sympathize. When

our baby Rebekah had her skin biopsy we were told by Dr. Roe at

Baylor that there was " absolutely, positively no way that Rebekah has

what Isabelle has. " Then we were re-informed by Dr. Whiteman at Mayo

not to get so sure because unless she has gone through a metabolic

stressful situation and tested negative at that time then we can't be

sure. Anyway, she is 16-months and never been seriously ill enough

to cause metabolic stress. But I watch her everyday and say " oh,

that looks like Isa " or " That is something Isa does when she

is " off " " I just wanted you to know that I am completely with you on

this.

As for developmentally Isabelle is right on or even ahead in some

areas. Her speech is poor but not bad enoough to qualify for therapy

and she does have a known metabolic disorder.

Sorry if this isn't more comforting.

See you soon!

Sharon mom to ISabelle and Rebekah

[Guest guest]

Thank you all SO much. Sitting here this morning reading your posts

to me feeling very supported and cared about and relieved that someone

understands. I've hesitated since we saw the neuro to post about

it (here or anywhere else really), I guess because I was still trying to

process it and see how I was feeling about it, but also because her issues

are SO mild comparitively and I didn't want to sound petty in my concerns.

Of course, its that feeling thats kept me from getting any real help with

her for some time now....considering what her brother and sister are going

through, it felt like I was looking for trouble to even think of her stuff

as issues, and I wanted/want to believe there is just something *I* can

do to make it better. If *I* just handle her better, things would

be different...if *I* just learn how to cope with her, things would be

different....if *I* just.....well you know how that goes. I drug

my feet big time getting her into the neuro (actually was told to do this

last year by a behavior specialist and made a million excuses as to why

she was wrong, and this was something I needed to deal with here at home),

and fully expected our neuro, who see's the other two and knows the issues

there, and deals with kids SO much more affected than she is, to look at

me like I was crazy for even bringing her in. I think part of me

even hoped he would!! Its got to be the only time I have gone into

a neuro and actually hoped for no answers (medically atleast) and that

if anything, I minimized the symptoms we were seeing. Even the ADD

thing was no where on my horizon of things he might say....yes, we had

considered it when things were so hard with her, but when she started sleeping

more and the behaviors improved to a managable level it really had left

my mind. Mind you, its not a "label" I am in any way ready to give

her, and I still think there is a chance that it will only get better and

she might not even appear ADD when we get the sleep stuff really under

control, and we're a long way from even considering treatment (in the medical

sense) but will definatly try some techniques that seem to work with ADD

kids and see if that improves things. And we'll see how things go

in school next year......she's smart as a whip and I think our biggest

challenge is going to be keeping her entertained.

ANYWAY.....rambling again!!

Thank you Anne for sharing your story, and your thoughtful and supportive

letter. It IS so overwhelming sometimes, and I am tired and its all

getting to me more than usual right now. This paragraph alone helped

a ton and gave me some perspective on it.......

The good news is there are treatments for migraines

and reflux and seizure

activity and many of her other symptoms. I know there will be for

your

little girl too whether her problems are due to mito or not. And

I do

believe that our children that express so mildly often are the

ones who

respond best to treatment.

Thanks for this and everything you said Anne.......really really helped

alot.

Alice......your so special hun!!! Thanks for the hugs and reminder

that there are people out there that care and understand. Just the

response this morning has touched me deeply. I truly hope that all

the testing and such (oh Lord, am I really getting into testing with this

one too!!) proves to show that this is all just the typical child varience

and not mito related. Please Lord if your listening!!! Thanks

friend for the support and encouragment.

Thanks too Dena for sharing your story!! I know how hard it can

be to talk about sometimes. And thank you for the prayers and support....they

really mean so much to me.

And .....thanks for sharing that we are not alone!! Wanted

to share that we have gotten some control over the reflux giving her Children's

Mylanta three times a day......hadn't mentioned it, but when this all first

began she was waking and vomiting almost nightly during those first few

hours when she appears to be refluxing!! Thats stopped since we started

the Mylanta atleast. She still shows signs that she is refluxing,

and she does still wake atleast once more often than not, but atleast we

are not running for a bucket when that happens!! The Benadryl has

helped mostly with getting her to sleep initially, but God forbid she really

wakes up from the refluxing because its sometimes a little while before

we can get her back to sleep again. So its not perfect, but it does

seem to help some. I will keep you posted on anything we might find

out in case it helps you all in some way. Atleast we know we are

not alone!!

Well, again, thank you so much for being here!!!! Your support

means a great deal to me. We are very blessed and have an amazingly

supportive family, but it takes them a little while to accept when these

new things come up and they are still trying to process it all right now

and are just not in a position to be there to listen right now. Was

feeling a little alone with it all, so am so grateful to know I am not.

BIG hugs,

Kass

[Guest guest]

Kass

Okay...i finally have a few minutes...just finished my craft project and will

tell about that in another post...

I wanted to remind everyone again that my kids are adopted so we are not

talking about more than one kids possible affected...sorry If i keep

reminding everyone but I know so many are getting info from these posts tha I

don't want to misrepresent something...

My only thought about Abby was the possibility of aspergers syndrom...which

despite what some think can be a real strength to a person...Bill Gates has

it...but they tend to be gifted and you might can look it up and see what you

think...my middle child is an aspie and he is wonderful in many ways and very

challenging in many others...he takes more mental ability to parent than I

think I am capable of...

about the reflux and the seizures...I know there is some thinking that kids

on the spectrum tend to have stomach issues...gaige complains of stomach

aches but sometimes I feel like it is just to get sympathy since we never see

any external reason for the aches...and , my mito kid, has stomach

aches so I think he might be copying him...

dont konw too much about the seizures but I know you got good advice onthat

already...

just thought I would throw that out there and you can throw it back if you

want...lol..

deb

[Guest guest]

Kass

Okay...i finally have a few minutes...just finished my craft project and will

tell about that in another post...

I wanted to remind everyone again that my kids are adopted so we are not

talking about more than one kids possible affected...sorry If i keep

reminding everyone but I know so many are getting info from these posts tha I

don't want to misrepresent something...

My only thought about Abby was the possibility of aspergers syndrom...which

despite what some think can be a real strength to a person...Bill Gates has

it...but they tend to be gifted and you might can look it up and see what you

think...my middle child is an aspie and he is wonderful in many ways and very

challenging in many others...he takes more mental ability to parent than I

think I am capable of...

about the reflux and the seizures...I know there is some thinking that kids

on the spectrum tend to have stomach issues...gaige complains of stomach

aches but sometimes I feel like it is just to get sympathy since we never see

any external reason for the aches...and , my mito kid, has stomach

aches so I think he might be copying him...

dont konw too much about the seizures but I know you got good advice onthat

already...

just thought I would throw that out there and you can throw it back if you

want...lol..

deb

[Guest guest]

Aha Deb...funny you should mention AS!! This was actually Chance's

initial diagnosis way back when. He's regressed and fallen further

down the spectrum now, but at one point was very high functioning.

I really appreciate you taking the time to share with me. At one

point, when Abby's behavior was really out of control and she was refusing

comforting when hurt, not making eye contact, had no regard for what

anyone else felt, and was eating inedible things and poop smearing, I really

thought we were headed towards an autism spectrum dx for her. She

was presenting very differently than Chance, but then, I knew that every

kid with AS is different, and girls affected are generally even more different.

Things are so much better though when she is getting sleep that I feel

more confident than ever before that she does NOT fall onto the spectrum,

however, definatly has some issues that are seen alot in kids that are.

She's definatly got some odd sensory issues happening, there's likely some

ADD happening, and she certainly tantrums and is challenging like so many

are (this was actually one area that Chance did not have real issues with).

She's definatly a hand full, but when she is getting sleep she is VERY

connected, very affectionate, and very social. Its when she is not

getting sleep that things get scary with her.

So, you were not far off the mark at all!!! I was thinking along

the same lines as you for a while there, and cannot even describe the relief

I feel seeing her behaving more typically when she is getting enough sleep.

Just makes figuring out her sleep issues all that much more vital.

I know it seems insane in some ways, but sleep really is the difference

between her appearing a bit ADD and a handfull, and her appearing to be

somewhere on the autistic spectrum. Pretty amazing to think about.

Thanks again for your thoughts and support. Looking forward to hearing

about the crafts project!!

BIG hugs,

Kass

VisibleWorship@... wrote:

Kass

Okay...i finally have a few minutes...just finished my craft project

and will

tell about that in another post...

I wanted to remind everyone again that my kids are adopted so we

are not

talking about more than one kids possible affected...sorry If i

keep

reminding everyone but I know so many are getting info from these

posts tha I

don't want to misrepresent something...

My only thought about Abby was the possibility of aspergers syndrom...which

despite what some think can be a real strength to a person...Bill

Gates has

it...but they tend to be gifted and you might can look it up and

see what you

think...my middle child is an aspie and he is wonderful in many

ways and very

challenging in many others...he takes more mental ability to parent

than I

think I am capable of...

about the reflux and the seizures...I know there is some thinking

that kids

on the spectrum tend to have stomach issues...gaige complains of

stomach

aches but sometimes I feel like it is just to get sympathy since

we never see

any external reason for the aches...and , my mito kid, has

stomach

aches so I think he might be copying him...

dont konw too much about the seizures but I know you got good advice

onthat

already...

just thought I would throw that out there and you can throw it back

if you

want...lol..

deb

Please contact mito-owner with any problems or questions.

[Guest guest]

Aha Deb...funny you should mention AS!! This was actually Chance's

initial diagnosis way back when. He's regressed and fallen further

down the spectrum now, but at one point was very high functioning.

I really appreciate you taking the time to share with me. At one

point, when Abby's behavior was really out of control and she was refusing

comforting when hurt, not making eye contact, had no regard for what

anyone else felt, and was eating inedible things and poop smearing, I really

thought we were headed towards an autism spectrum dx for her. She

was presenting very differently than Chance, but then, I knew that every

kid with AS is different, and girls affected are generally even more different.

Things are so much better though when she is getting sleep that I feel

more confident than ever before that she does NOT fall onto the spectrum,

however, definatly has some issues that are seen alot in kids that are.

She's definatly got some odd sensory issues happening, there's likely some

ADD happening, and she certainly tantrums and is challenging like so many

are (this was actually one area that Chance did not have real issues with).

She's definatly a hand full, but when she is getting sleep she is VERY

connected, very affectionate, and very social. Its when she is not

getting sleep that things get scary with her.

So, you were not far off the mark at all!!! I was thinking along

the same lines as you for a while there, and cannot even describe the relief

I feel seeing her behaving more typically when she is getting enough sleep.

Just makes figuring out her sleep issues all that much more vital.

I know it seems insane in some ways, but sleep really is the difference

between her appearing a bit ADD and a handfull, and her appearing to be

somewhere on the autistic spectrum. Pretty amazing to think about.

Thanks again for your thoughts and support. Looking forward to hearing

about the crafts project!!

BIG hugs,

Kass

VisibleWorship@... wrote:

Kass

Okay...i finally have a few minutes...just finished my craft project

and will

tell about that in another post...

I wanted to remind everyone again that my kids are adopted so we

are not

talking about more than one kids possible affected...sorry If i

keep

reminding everyone but I know so many are getting info from these

posts tha I

don't want to misrepresent something...

My only thought about Abby was the possibility of aspergers syndrom...which

despite what some think can be a real strength to a person...Bill

Gates has

it...but they tend to be gifted and you might can look it up and

see what you

think...my middle child is an aspie and he is wonderful in many

ways and very

challenging in many others...he takes more mental ability to parent

than I

think I am capable of...

about the reflux and the seizures...I know there is some thinking

that kids

on the spectrum tend to have stomach issues...gaige complains of

stomach

aches but sometimes I feel like it is just to get sympathy since

we never see

any external reason for the aches...and , my mito kid, has

stomach

aches so I think he might be copying him...

dont konw too much about the seizures but I know you got good advice

onthat

already...

just thought I would throw that out there and you can throw it back

if you

want...lol..

deb

Please contact mito-owner with any problems or questions.

[Guest guest]

Kass,

I forgot to mention that Colin is doing much better since he started

taking CoQ10, Vitamin E, B multi, and extra vitamin C in addition to his

children's multi. He started taking some of the mito cocktail vitamins,

and everything was normal in his latest bloodwork. He still had some

problems when he was sick with the flu for more than two weeks in

February though.

Maybe with her doctors permission, you could start Abby on some of the

components of the mito cocktail.

[Guest guest]

Kass

we can talk more about AS when we meet...actually, Gaige sounds very much the

same as Abby...I am bringing my Current Pediatric Diagnosis and Conditions

with me and I think the dx criteria might be in there...Aspie's can be a

blessing in many ways...Gaige has a quirky sense of humor and keeps us

laughing...i am very glad about that...I almost named him Isaac which means

laughing one, but we went for Gaige which means promise and that fits

too...remind me to show you his school picture...that perfectly depicts his

character...one of his latest antics is includes putting a little toy frog in

my baked potato while I stepped back in the kitchen to get something ...he is

hilarious!

deb

[Guest guest]

Kass

we can talk more about AS when we meet...actually, Gaige sounds very much the

same as Abby...I am bringing my Current Pediatric Diagnosis and Conditions

with me and I think the dx criteria might be in there...Aspie's can be a

blessing in many ways...Gaige has a quirky sense of humor and keeps us

laughing...i am very glad about that...I almost named him Isaac which means

laughing one, but we went for Gaige which means promise and that fits

too...remind me to show you his school picture...that perfectly depicts his

character...one of his latest antics is includes putting a little toy frog in

my baked potato while I stepped back in the kitchen to get something ...he is

hilarious!

deb

[Guest guest]

oh I forgot to mention two things...

We have to give Gaige a great number and volume of prescription drugs to get

him asleep and keep him that way...even then it might take him an hour to

fall asleep if he is really wound up...

poop-smearing...boy that is fun...gaige did this when he was younger...now if

he has to go int the middle of the night or in the morning before we are up,

he poops in his toy box as a toiltet or he will get a sock and, you know

dont' wanna know...we still haven't figured out this one...altho I really

think this is more of a potty-training issue than a sensory thing, but he

does have a few of those too...

he has imaginary friends...they are lots of fun...

deb

[Guest guest]

Just a quick question? Does Abby have touretts? I have a friend that has a child with touretts and he does some of the same things. Kim

VisibleWorship@... wrote: oh I forgot to mention two things...We have to give Gaige a great number and volume of prescription drugs to get him asleep and keep him that way...even then it might take him an hour to fall asleep if he is really wound up...poop-smearing...boy that is fun...gaige did this when he was younger...now if he has to go int the middle of the night or in the morning before we are up, he poops in his toy box as a toiltet or he will get a sock and, you know dont' wanna know...we still haven't figured out this one...altho I really think this is more of a potty-training issue than a sensory thing, but he does have a few of those too...he has imaginary friends...they are lots of fun...debPlease contact mito-owner with any problems or questions.