Re: Heat/Behavior

[Guest guest]

We are KS. It gets in the triple digits with humidity. Horrible even for

me. Would love to move to a dryer cooler climate, but can't uproot Other

boys. Oldest is a freshman. I'm glad conference is going well, wish I could

have made it.

See ya

mom to Colby 12, COX IV, LCHAD, ADHD, Chad 14 healthy, Caleb 9 also

healthy

[Guest guest]

We are KS. It gets in the triple digits with humidity. Horrible even for

me. Would love to move to a dryer cooler climate, but can't uproot Other

boys. Oldest is a freshman. I'm glad conference is going well, wish I could

have made it.

See ya

mom to Colby 12, COX IV, LCHAD, ADHD, Chad 14 healthy, Caleb 9 also

healthy

[Guest guest]

,

Its worth the fight if you have to to get your son an air conditioned vehicle. The school system should provide one, like ours had to. When I had a complaint against our school system they were forced to purchase and air conditioned handicapped bus. So inquire about it. If your child is anything like mine, she would be falling asleep by the time she got to school if she had no A/C. All that is past us for now because she is unable to go to school and is recieving homebound services. We need to complete further tests this summer to see if we will be sending her back to school in the future or continue HB services.

Best of luck to you,

Horsley

Mom to 12

Re: Heat/Behavior

HeyColby can't tolerate heat either, so he waits till the evening to go out. Colby is MR, and always happy, he plays video games when he's inside, and tears up everything leaving a Colby path of destruction. He is going to go to summer school, I am worried about the heat on the bus ride. Does anyone have any suggestions? I wonder if I should request an airconditioned van, I know they have them in the school district. Another IEP change, but might solve the problem. Do you have an IEP?See ya mom to Colby 12, COX IV, LCHAD, ADHD, Chad 14 healthy, Caleb 9 also healthyPlease contact mito-owner with any problems or questions.

[Guest guest]

,

Several reasons why she is not in school. She does not have enough energy to get up get dressessed and then do school work...she sleeps, Her memory is really bad and she cant remember how to do things, read, write ect. and the kids make fun of her because of this, she cant take care of her personal needs and is incontonent bowel and bladder. school not willing to give her a one on one person to help her, and she gets very mean when she is tired or gets frustrated and is aggressive towards others. Just not worth it for anyone. Her doctors are planning to do in depth neuro phyc tests this summer to see how each part of her brain is actually functioning, but even they say academics takes second priority now. She had 26 dr's and therapists see her in the hospital for tests and they met with us and said they dont know what to do for her and that they have never seen a child with so complicated a case.

These are just a few of the reasons she is at home, I really dont know if she will ever go back and that is so sad.

She has a wonderful HB teacher that teaches early childhood education but is right on for because alot of the time she acts and thinks like she is 5 or 6.

When was still in school some and we needed to do HB services they brought the paperwork by to me or mailed it for me to sign and I wrote any other thoughts and coments that I had that they had not stated directly on that paper and put my initials by it in red ink so it was seen. It was never a problem. They send work home for us to do when she was able.I just had to have a note from 's dr saying she needed HB Services. Not at all a big deal.

thanks for writing!

Horsley

Re: Heat/Behavior

hey Forgive me for asking, is not healthy enough to go to school? I know we can get homebound services for Colby when he is ill, but they said we would have to have an IEP change in placement meeting every time I requested it. So I just didn't bother with it. You don't have to tell me why if you don't want to.See ya mom to Colby 12, COX IV, LCHAD, ADHD, Chad 14 healthy, Caleb 9 also healthyPlease contact mito-owner with any problems or questions.

[Guest guest]

hey

Forgive me for asking, is not healthy enough to go to school? I know

we can get homebound services for Colby when he is ill, but they said we

would have to have an IEP change in placement meeting every time I requested

it. So I just didn't bother with it. You don't have to tell me why if you

don't want to.

See ya

mom to Colby 12, COX IV, LCHAD, ADHD, Chad 14 healthy, Caleb 9 also

healthy

[Guest guest]

Kim,

Cortisol is some sort of hormone (i think) It causes diseases such as Cushions disease (which is what he was tested for after the endo saw his body). He was really sure he had this, but was surprized to see the levels at "normal". I think it plays a roll in thyroid diseases. I do know that too much causes thinning of the skin and Stria (stretch Marks), which is what my son has all over his trunk. I think the Endo thought he had the disease because the marks were in unusual places, like on the top of his shoulders, and on his neck, as well as all over the front and back of his trunk.

I hope I answered your question. And remember no questions are sily.

Robin

[Guest guest]

Kim,

Cortisol is some sort of hormone (i think) It causes diseases such as Cushions disease (which is what he was tested for after the endo saw his body). He was really sure he had this, but was surprized to see the levels at "normal". I think it plays a roll in thyroid diseases. I do know that too much causes thinning of the skin and Stria (stretch Marks), which is what my son has all over his trunk. I think the Endo thought he had the disease because the marks were in unusual places, like on the top of his shoulders, and on his neck, as well as all over the front and back of his trunk.

I hope I answered your question. And remember no questions are sily.

Robin

[Guest guest]

Colby also tires quite easily, we are thinking of going half days. Colby is

very social, he is very popular among his peers. But I see the way they

treat the other kids in his class. It angers me. Colby also gets a little

ticked off when he is tired. Tryed to explain to teacher, but she puts him in

timeout ALOT! Colby does not read or write, he knows so much, he just can't

talk. He has a speaking device called a dynamyte that he uses at school. He

also signs. Colby misses 45-60 days out of the school year. I know there

will probably come a day when he will not be able to go. Thanks for posting.

Take care!

See ya

mom to Colby 12, COX IV, LCHAD, ADHD, Chad 14 healthy, Caleb 9 also

healthy

[Guest guest]

Colby also tires quite easily, we are thinking of going half days. Colby is

very social, he is very popular among his peers. But I see the way they

treat the other kids in his class. It angers me. Colby also gets a little

ticked off when he is tired. Tryed to explain to teacher, but she puts him in

timeout ALOT! Colby does not read or write, he knows so much, he just can't

talk. He has a speaking device called a dynamyte that he uses at school. He

also signs. Colby misses 45-60 days out of the school year. I know there

will probably come a day when he will not be able to go. Thanks for posting.

Take care!

See ya

mom to Colby 12, COX IV, LCHAD, ADHD, Chad 14 healthy, Caleb 9 also

healthy

[Guest guest]

Kim,

It doesn't hurt him, he doesn't even realize it until "finds" more. I'm glad it's painfree, because the Mito Disease is painful enough. I do however worry a lot about is skin. He is fair skinned and has several moles. He wanted a large one removed from his neck, because he was embarrased by it. I held off for a while because anytime he has any physiological pain, his Mito symptoms go wild. But, I notice a new mole near it a few months ago that I hadn't seen before, so I brought him to the Dermotolgist. They removed both moles. The second came back Pre-melonoma!

They said that it wasn't cancer yet, but they were glad it was off. They said they could not predict when the mole would have become cancerous, it could have been a week, or a few years. Anyway I then took him to a Dermo. in Boston that Dr. orson suggested. They searched his hole body, found 5 that looked suspicious, and removed them All were fine, Thank God ! But I do worry about a lot about his skin.

I asked the Dr. to check him every 6 mos. She thought every year was fine, so I quess thats what I'll do. So no sun w/o sunscreen, which is fine with him, because he can't tolerate the heat anyway.

Thanks,

Robin

[Guest guest]

Kim,

It doesn't hurt him, he doesn't even realize it until "finds" more. I'm glad it's painfree, because the Mito Disease is painful enough. I do however worry a lot about is skin. He is fair skinned and has several moles. He wanted a large one removed from his neck, because he was embarrased by it. I held off for a while because anytime he has any physiological pain, his Mito symptoms go wild. But, I notice a new mole near it a few months ago that I hadn't seen before, so I brought him to the Dermotolgist. They removed both moles. The second came back Pre-melonoma!

They said that it wasn't cancer yet, but they were glad it was off. They said they could not predict when the mole would have become cancerous, it could have been a week, or a few years. Anyway I then took him to a Dermo. in Boston that Dr. orson suggested. They searched his hole body, found 5 that looked suspicious, and removed them All were fine, Thank God ! But I do worry about a lot about his skin.

I asked the Dr. to check him every 6 mos. She thought every year was fine, so I quess thats what I'll do. So no sun w/o sunscreen, which is fine with him, because he can't tolerate the heat anyway.

Thanks,

Robin

[Guest guest]

He has a speaking device called a dynamyte that he uses at school

Mamie Rose has a DynaMyte, too! Do you know about the DynamicDuos e-group? It's really helpful with programming.

Maggie

[Guest guest]

He has a speaking device called a dynamyte that he uses at school

Mamie Rose has a DynaMyte, too! Do you know about the DynamicDuos e-group? It's really helpful with programming.

Maggie

[Guest guest]

Thanks for answering my question. Does this hurt your son when this happens? Or does he know when his skin is stretching?

Thanks again

Kim

Middpowell@... wrote: Kim, Cortisol is some sort of hormone (i think) It causes diseases such as Cushions disease (which is what he was tested for after the endo saw his body). He was really sure he had this, but was surprized to see the levels at "normal". I think it plays a roll in thyroid diseases. I do know that too much causes thinning of the skin and Stria (stretch Marks), which is what my son has all over his trunk. I think the Endo thought he had the disease because the marks were in unusual places, like on the top of his shoulders, and on his neck, as well as all over the front and back of his trunk. I hope I answered your question. And remember no questions are sily. Robin Please contact mito-owner with any problems or questions.

[Guest guest]

, what is a dynamyte? How does he use this?

Thanks, Kim

cccccclark@... wrote: Colby also tires quite easily, we are thinking of going half days. Colby is very social, he is very popular among his peers. But I see the way they treat the other kids in his class. It angers me. Colby also gets a little ticked off when he is tired. Tryed to explain to teacher, but she puts him in timeout ALOT! Colby does not read or write, he knows so much, he just can't talk. He has a speaking device called a dynamyte that he uses at school. He also signs. Colby misses 45-60 days out of the school year. I know there will probably come a day when he will not be able to go. Thanks for posting. Take care!See ya mom to Colby 12, COX IV, LCHAD, ADHD, Chad 14 healthy, Caleb 9 also healthyPlease contact mito-owner with any problems or questions.

[Guest guest]

have you thought about asking the closest community college if students in nursing, spec. ed, etc. could come to your house and work/play with ?

we did that when we wanted students to help us out with Greenspan floortime with . The students got those credits they need in regards to community worktime. We arranged this with the heads of those departments. up front we said we could not afford to pay them as if they were therapists.

Hi Cara,

This is an absolutely brilliant idea. Thanks for sharing it.

Maggie

[Guest guest]

have you thought about asking the closest community college if students in nursing, spec. ed, etc. could come to your house and work/play with ?

we did that when we wanted students to help us out with Greenspan floortime with . The students got those credits they need in regards to community worktime. We arranged this with the heads of those departments. up front we said we could not afford to pay them as if they were therapists.

Hi Cara,

This is an absolutely brilliant idea. Thanks for sharing it.

Maggie

[Guest guest]

Cara,

Great idea!

Thanks,

Re: Delayed Gastric Emptying

<< f I am wrong about the Bicitra, do you know of any medication that does such. He told me to figure out what medication it was and we would talk it over. >>Hi Krystena,First and foremost, I am NOT a doctor or a pharmacist. I do know that Bicitra (sodium bicarb) buffers acid, but I don't know if it specifically addresses lactic acid. In fact, I know it is used to buffer ketoacids in 's case. I'd ask your doc or your pharmacist to explain this more fully. *Anecdotally*, I know that many on the OAA list (with all sorts of organic acidemias) have shared that Bicitra, Carnitor BOTH have resulted in their children's leg pain getting better. That has been our experience. 's "cramps" went away with the Bicitra. needed the Bicitra AND Carnitor before his improved. What I have found, yet no one told us to expect it, is that **for **, treating his acidosis (he has elevated urinary organic acids lactic acid, but NOT blood level lactic acid, and he has extremely high ketone bodies) has resulted in many of his other organ system problems (particularly GI and pulmonary) improving IMMENSELY.) While we were previously treating reflux, GI (stomach bleeding), stomach pain, coughing, decreased PFTS (lung function), etc., all separately based on symptom, when the basic ketoacidosis was treated for different reasons, everything (except muscle atrophy and heat intolerance) improved. My personal opinion is that with the acidosis, everything was "out of whack" and treating the acidosis eliminated the need to treat a lot of those individual "symptoms." But, again, I caution, this might be unique to and 's ketone utilization disorder situation. I do wonder if a lot of refractory reflux patients perhaps have ketoacidosis though.....It's interesting that I don't see a single GI or pulmonary doc here at the conference..although these are the specialists that often see mito symptom patients before mito is considered. (reflux, dysmotility, aspiration pneumonias from reflux, asthma-like air hunger, etc.).Hope this helps,DenaPlease contact mito-owner with any problems or questions.

[Guest guest]

Thanks Jenn!

Re: Delayed Gastric Emptying> > > In a message dated 6/8/2002 8:39:11 AM Eastern Daylight Time, > krystena@b... writes:> > << f I am wrong about the Bicitra, do you know of any medication that does > such. He told me to figure out what medication it was and we would talk it > over. > >>> > Hi Krystena,> First and foremost, I am NOT a doctor or a pharmacist. I do know that > Bicitra (sodium bicarb) buffers acid, but I don't know if it specifically > addresses lactic acid. In fact, I know it is used to buffer ketoacids in > 's case. I'd ask your doc or your pharmacist to explain this more > fully. *Anecdotally*, I know that many on the OAA list (with all sorts of > organic acidemias) have shared that Bicitra, Carnitor BOTH have resulted in > their children's leg pain getting better. That has been our experience. > 's "cramps" went away with the Bicitra. needed the Bicitra > AND Carnitor before his improved. > > What I have found, yet no one told us to expect it, is that **for **, > treating his acidosis (he has elevated urinary organic acids lactic acid, but > NOT blood level lactic acid, and he has extremely high ketone bodies) has > resulted in many of his other organ system problems (particularly GI and > pulmonary) improving IMMENSELY.) While we were previously treating reflux, > GI (stomach bleeding), stomach pain, coughing, decreased PFTS (lung > function), etc., all separately based on symptom, when the basic ketoacidosis > was treated for different reasons, everything (except muscle atrophy and heat > intolerance) improved. My personal opinion is that with the acidosis, > everything was "out of whack" and treating the acidosis eliminated the need > to treat a lot of those individual "symptoms." But, again, I caution, this > might be unique to and 's ketone utilization disorder > situation. I do wonder if a lot of refractory reflux patients perhaps have > ketoacidosis though.....It's interesting that I don't see a single GI or > pulmonary doc here at the conference..although these are the specialists that > often see mito symptom patients before mito is considered. (reflux, > dysmotility, aspiration pneumonias from reflux, asthma-like air hunger, etc.).> > Hope this helps,> Dena> >

[Guest guest]

Thanks Jenn!

Re: Delayed Gastric Emptying> > > In a message dated 6/8/2002 8:39:11 AM Eastern Daylight Time, > krystena@b... writes:> > << f I am wrong about the Bicitra, do you know of any medication that does > such. He told me to figure out what medication it was and we would talk it > over. > >>> > Hi Krystena,> First and foremost, I am NOT a doctor or a pharmacist. I do know that > Bicitra (sodium bicarb) buffers acid, but I don't know if it specifically > addresses lactic acid. In fact, I know it is used to buffer ketoacids in > 's case. I'd ask your doc or your pharmacist to explain this more > fully. *Anecdotally*, I know that many on the OAA list (with all sorts of > organic acidemias) have shared that Bicitra, Carnitor BOTH have resulted in > their children's leg pain getting better. That has been our experience. > 's "cramps" went away with the Bicitra. needed the Bicitra > AND Carnitor before his improved. > > What I have found, yet no one told us to expect it, is that **for **, > treating his acidosis (he has elevated urinary organic acids lactic acid, but > NOT blood level lactic acid, and he has extremely high ketone bodies) has > resulted in many of his other organ system problems (particularly GI and > pulmonary) improving IMMENSELY.) While we were previously treating reflux, > GI (stomach bleeding), stomach pain, coughing, decreased PFTS (lung > function), etc., all separately based on symptom, when the basic ketoacidosis > was treated for different reasons, everything (except muscle atrophy and heat > intolerance) improved. My personal opinion is that with the acidosis, > everything was "out of whack" and treating the acidosis eliminated the need > to treat a lot of those individual "symptoms." But, again, I caution, this > might be unique to and 's ketone utilization disorder > situation. I do wonder if a lot of refractory reflux patients perhaps have > ketoacidosis though.....It's interesting that I don't see a single GI or > pulmonary doc here at the conference..although these are the specialists that > often see mito symptom patients before mito is considered. (reflux, > dysmotility, aspiration pneumonias from reflux, asthma-like air hunger, etc.).> > Hope this helps,> Dena> >

[Guest guest]

Hey Maggie

Thats great! I did not know there was that specific site, but have been

wanting to check out their website. What user do you use. We are in child

with Kits voice.

See ya later bye

, mom to Colby, 12, COX IV< LCHAD<ADHD<ACC sons Chad 14, healthy,

Caleb, 9, healthy

[Guest guest]

Hey Maggie

Thats great! I did not know there was that specific site, but have been

wanting to check out their website. What user do you use. We are in child

with Kits voice.

See ya later bye

, mom to Colby, 12, COX IV< LCHAD<ADHD<ACC sons Chad 14, healthy,

Caleb, 9, healthy

[Guest guest]

What user do you use. We are in child

with Kits voice.

Hi ,

We are, too! Also lots of custom programming. You might want to check out the DynamicDuos list, it's just great. It's at DynamicDuos . It's not as active as the mito list.

Maggie

[Guest guest]

Kim

A dynamyte if you haven't already heard, I am slow reading my e-mails, I have

121 to go. lol. It is a small computer, that is preprogrammed, and also lets

you have as much programming as you want to add. Anything can be

programmed. Make a Wish purchased it for Colby. They are very expensive,

$6000., and the warranty for a year is expensive too. I love it for school,

but it too expensive to take everywhere. I wish he had a smaller one, which

I think they do offer now, for taking out to sporting events etc. That way

he could really communicate with it full time. Currently it is not under

warranty. Scary thought, repairs can be costly. I will try to find the web

site if you haven't already. We have had problems with some teachers not

using it and refusing to go to classes that are offered. But they can't do

that legally, so once again I become quite unpopular. After 9 years in the

sp ed. I choose my battles carefully. Good Luck. It is an awsome little

machine.

See ya later bye

, mom to Colby, 12, COX IV< LCHAD<ADHD<ACC sons Chad 14, healthy,

Caleb, 9, healthy

[Guest guest]

Kim

A dynamyte if you haven't already heard, I am slow reading my e-mails, I have

121 to go. lol. It is a small computer, that is preprogrammed, and also lets

you have as much programming as you want to add. Anything can be

programmed. Make a Wish purchased it for Colby. They are very expensive,

$6000., and the warranty for a year is expensive too. I love it for school,

but it too expensive to take everywhere. I wish he had a smaller one, which

I think they do offer now, for taking out to sporting events etc. That way

he could really communicate with it full time. Currently it is not under

warranty. Scary thought, repairs can be costly. I will try to find the web

site if you haven't already. We have had problems with some teachers not

using it and refusing to go to classes that are offered. But they can't do

that legally, so once again I become quite unpopular. After 9 years in the

sp ed. I choose my battles carefully. Good Luck. It is an awsome little

machine.

See ya later bye

, mom to Colby, 12, COX IV< LCHAD<ADHD<ACC sons Chad 14, healthy,

Caleb, 9, healthy