Re: Question for all you experts

[Guest guest]

the leg pains are normal I think...

do you noticed any increased tightness in his legs? This can happen to some mito pts although I think more of them end us losing tone. My daughter (who has mild CP) has increased tone in her calves...used to be everywhere...but now just there...anyway, when its cold its more painful for her. Might just check. My little one looks like she works out, b/c they are so tight. Also are you noticing any toe walking. Someone told me they tested olympic athletes and made them toe-walk for a day and they were all in terrible pain by the end of the day.

about the breathing... used to do a cough thing but we could never get our pulmono to figure it out (he was one of the docs that just saw TERMINAL when he looked at and never wanted to do anything for him)...so I am not much help with that...

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. www.LifeofLoveProject.orgwww.debwells.com

[Guest guest]

the leg pains are normal I think...

do you noticed any increased tightness in his legs? This can happen to some mito pts although I think more of them end us losing tone. My daughter (who has mild CP) has increased tone in her calves...used to be everywhere...but now just there...anyway, when its cold its more painful for her. Might just check. My little one looks like she works out, b/c they are so tight. Also are you noticing any toe walking. Someone told me they tested olympic athletes and made them toe-walk for a day and they were all in terrible pain by the end of the day.

about the breathing... used to do a cough thing but we could never get our pulmono to figure it out (he was one of the docs that just saw TERMINAL when he looked at and never wanted to do anything for him)...so I am not much help with that...

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. www.LifeofLoveProject.orgwww.debwells.com

[Guest guest]

Kim,

I'm sure on of the other mothers will know more than me but, in terms of pain in

the legs from mito, Dr Korson at Tufts (the mito expert we see) asked

specifically if Asher experienced pain in his muscles - and it's something that

often goes with mito and has to do, I think, with fatigue and muscle cramping

just like we all get when we are way tired. But the shortness of breath.. I

don't know... that's not something I'm familiar with.... have to ask one of the

other mothers.

Anne R

[Guest guest]

Kim,

I'm sure on of the other mothers will know more than me but, in terms of pain in

the legs from mito, Dr Korson at Tufts (the mito expert we see) asked

specifically if Asher experienced pain in his muscles - and it's something that

often goes with mito and has to do, I think, with fatigue and muscle cramping

just like we all get when we are way tired. But the shortness of breath.. I

don't know... that's not something I'm familiar with.... have to ask one of the

other mothers.

Anne R

[Guest guest]

Does he have asthma? I'd call the doc today if he has no diagnosis. It sounds

like cough varient asthma. I'd see if a breathing treatment helps.

The leg pains sound like my son with his mito.

[Guest guest]

Does he have asthma? I'd call the doc today if he has no diagnosis. It sounds

like cough varient asthma. I'd see if a breathing treatment helps.

The leg pains sound like my son with his mito.

[Guest guest]

I agree with , my son Matt has what your describing with your

son, cough and shortness of breath, i thought it was just a cold and

we waited a month before taking him to the ped, we had just got a

new kitten at the time and we also thought maybe that was the

problem, but when we went on vacation down the shore (without the

kitten) there was no change with the cough, and this coughing was

occuring when Matt was quietly playing and laying down, i called

the ped as soon as we got back and sure enough it is cough varient

asthma. And Matt actually enjoys his breathing treatment with

spacer tube, that has cool characters on the spacer and less scary

than just using an inhaler. And he feels so much better, the

coughing at times became so bad he would panic because he couldnt

get enough air between coughs. Call the ped, just in case better to

find out its nothing, then wait and find out it really is

something!!! Barb

[Guest guest]

I agree with , my son Matt has what your describing with your

son, cough and shortness of breath, i thought it was just a cold and

we waited a month before taking him to the ped, we had just got a

new kitten at the time and we also thought maybe that was the

problem, but when we went on vacation down the shore (without the

kitten) there was no change with the cough, and this coughing was

occuring when Matt was quietly playing and laying down, i called

the ped as soon as we got back and sure enough it is cough varient

asthma. And Matt actually enjoys his breathing treatment with

spacer tube, that has cool characters on the spacer and less scary

than just using an inhaler. And he feels so much better, the

coughing at times became so bad he would panic because he couldnt

get enough air between coughs. Call the ped, just in case better to

find out its nothing, then wait and find out it really is

something!!! Barb

[Guest guest]

Kim,

If I remember correctly, you live in the Dallas area. There has been

a nasty cough going around here since Thanksgiving. My husband and

Evan just finished antibiotics because the doctor thought it was

caused by atypical bacteria. Evan is so much better. Also he started

thyroid meds on Tuesday. Evan's last MRI (done 6 years AGO!!!) showed

" the anterior pituitary gland appears slightly small and correlation

is recommended with endocrine status. " The neuro (ex) never shared

this information with me or Evan's pediatrician. He reported that the

MRI was unchanged from a year earlier (no note of small pituitary on

that one--I have a copy). This is very relevant esp. in light of the

fact that Evan has secondary hypothyroidism now (low TSH and low T4).

His T4 was low for years, but his TSH just became low in the last few

months. We plan to increase his dose of thyroid meds until his T4

reaches the middle of the reference range for his age.

[Guest guest]

Thank all of y'all so much,for the replies. Logan got up today,,and was fine,,other than the cough. His legs weren't hurting anymore,,and he was able to talk without losing his breath. I called the Dr,,and he asked lots of questions about the cough (is it tight,wet,dry,short,hacking,barking cough,,etc) He called a prescription in for a cough med,,and told me that if he is no better by this weekend that he wants to see him,,or if he has another episode of not being able to talk,,to call immediately.

Now,,the thing I found interesting,is that all of y'all say that the leg pain is common with mito,,but of course,,we don't have the "official" mito dx,,so I wanted to know what his ped would have to say about it. He said that he thinks it is just "another one of those Logan things,,that happens when he gets sick" I disagree,and think it is another indication that he truly has a mito disease.His ped is the most awesome man I know,,and I respect him,and trust him more than anyone,,but he will be the first one to admit that he doesn't know anything about mito. We were going to go to Cleveland this past Dec,,,but couldn't get insurance to pay for it,,and at the time,,Logan was doing really well. If this is going to be a recurring thing,,then we will have to fight insurance to pay,I guess. I was wondering if anyone here knows what kind of blood tests I can ask the ped to order,,that would "point " to mito. The only thing they have

done is the muscle biopsy,,and at the time,they were actually looking for a myopathy,,,so the discovery of the increased mito enzymes,,and the fiber type issue (he has more type 1 than 2 and the type 2 that he has shows mild to moderate atrophy) was kinda a surprise,,and no one seems to know what to do with that info. (How was that for a run on sentence ?)

Another question I have is this,,,do y'alls kids tend to slump,instead of sit ? He is always slumped down on the couch,the chair,,in the car,,even at the computer,,,I have no idea how he can even see the keyboard,,because he is basically laying down in the chair. His butt will be where his knees should be and his shoulders will be where his butt should be. I am constantly telling him to sit up ! Is that part of the weakness ? Its like his is a noodle,,that can't sit up ! I actually think it has gotten worse,,and I can't even imagine how much worse it would be,if he wasn't home schooled ! I think the Dr would really be noticing,the severity of the problem,,but as it is,,since we are home,,it isn't that big of a deal. He just rests as often as he needs to .

ANYWAY,,,I didn't mean to go on and on. I just have alot of questions,,and nobody around here seems to know any answers.

Thank y'all so much,for being here for me,,and I wish everyone a healthy new year and a cure for mito,,,and everything else that is robbing our kids of their childhood !

Kim mom to Meaghan 15 ~~Katelyn 12 Bipolar,and OCD ~~ Logan 7 Autism,congenital myopathy,possible mitochondrial disease,and JRA ~~ and Ethan 5 and 100 % BOY__________________________________________________

[Guest guest]

Thank all of y'all so much,for the replies. Logan got up today,,and was fine,,other than the cough. His legs weren't hurting anymore,,and he was able to talk without losing his breath. I called the Dr,,and he asked lots of questions about the cough (is it tight,wet,dry,short,hacking,barking cough,,etc) He called a prescription in for a cough med,,and told me that if he is no better by this weekend that he wants to see him,,or if he has another episode of not being able to talk,,to call immediately.

Now,,the thing I found interesting,is that all of y'all say that the leg pain is common with mito,,but of course,,we don't have the "official" mito dx,,so I wanted to know what his ped would have to say about it. He said that he thinks it is just "another one of those Logan things,,that happens when he gets sick" I disagree,and think it is another indication that he truly has a mito disease.His ped is the most awesome man I know,,and I respect him,and trust him more than anyone,,but he will be the first one to admit that he doesn't know anything about mito. We were going to go to Cleveland this past Dec,,,but couldn't get insurance to pay for it,,and at the time,,Logan was doing really well. If this is going to be a recurring thing,,then we will have to fight insurance to pay,I guess. I was wondering if anyone here knows what kind of blood tests I can ask the ped to order,,that would "point " to mito. The only thing they have

done is the muscle biopsy,,and at the time,they were actually looking for a myopathy,,,so the discovery of the increased mito enzymes,,and the fiber type issue (he has more type 1 than 2 and the type 2 that he has shows mild to moderate atrophy) was kinda a surprise,,and no one seems to know what to do with that info. (How was that for a run on sentence ?)

Another question I have is this,,,do y'alls kids tend to slump,instead of sit ? He is always slumped down on the couch,the chair,,in the car,,even at the computer,,,I have no idea how he can even see the keyboard,,because he is basically laying down in the chair. His butt will be where his knees should be and his shoulders will be where his butt should be. I am constantly telling him to sit up ! Is that part of the weakness ? Its like his is a noodle,,that can't sit up ! I actually think it has gotten worse,,and I can't even imagine how much worse it would be,if he wasn't home schooled ! I think the Dr would really be noticing,the severity of the problem,,but as it is,,since we are home,,it isn't that big of a deal. He just rests as often as he needs to .

ANYWAY,,,I didn't mean to go on and on. I just have alot of questions,,and nobody around here seems to know any answers.

Thank y'all so much,for being here for me,,and I wish everyone a healthy new year and a cure for mito,,,and everything else that is robbing our kids of their childhood !

Kim mom to Meaghan 15 ~~Katelyn 12 Bipolar,and OCD ~~ Logan 7 Autism,congenital myopathy,possible mitochondrial disease,and JRA ~~ and Ethan 5 and 100 % BOY__________________________________________________

[Guest guest]

Kim, since you take Logan to Cook's in Ft.Worth have your doctor talk with Dr. Ryals (neo) or even Dr. Marks. Dr. Marks is over MDA but is informed in Mito.Kim wrote:

Thank all of y'all so much,for the replies. Logan got up today,,and was fine,,other than the cough. His legs weren't hurting anymore,,and he was able to talk without losing his breath. I called the Dr,,and he asked lots of questions about the cough (is it tight,wet,dry,short,hacking,barking cough,,etc) He called a prescription in for a cough med,,and told me that if he is no better by this weekend that he wants to see him,,or if he has another episode of not being able to talk,,to call immediately.

Now,,the thing I found interesting,is that all of y'all say that the leg pain is common with mito,,but of course,,we don't have the "official" mito dx,,so I wanted to know what his ped would have to say about it. He said that he thinks it is just "another one of those Logan things,,that happens when he gets sick" I disagree,and think it is another indication that he truly has a mito disease.His ped is the most awesome man I know,,and I respect him,and trust him more than anyone,,but he will be the first one to admit that he doesn't know anything about mito. We were going to go to Cleveland this past Dec,,,but couldn't get insurance to pay for it,,and at the time,,Logan was doing really well. If this is going to be a recurring thing,,then we will have to fight insurance to pay,I guess. I was wondering if anyone here knows what kind of blood tests I can ask the ped to order,,that would "point " to mito. The only thing they have

done is the muscle biopsy,,and at the time,they were actually looking for a myopathy,,,so the discovery of the increased mito enzymes,,and the fiber type issue (he has more type 1 than 2 and the type 2 that he has shows mild to moderate atrophy) was kinda a surprise,,and no one seems to know what to do with that info. (How was that for a run on sentence ?)

Another question I have is this,,,do y'alls kids tend to slump,instead of sit ? He is always slumped down on the couch,the chair,,in the car,,even at the computer,,,I have no idea how he can even see the keyboard,,because he is basically laying down in the chair. His butt will be where his knees should be and his shoulders will be where his butt should be. I am constantly telling him to sit up ! Is that part of the weakness ? Its like his is a noodle,,that can't sit up ! I actually think it has gotten worse,,and I can't even imagine how much worse it would be,if he wasn't home schooled ! I think the Dr would really be noticing,the severity of the problem,,but as it is,,since we are home,,it isn't that big of a deal. He just rests as often as he needs to .

ANYWAY,,,I didn't mean to go on and on. I just have alot of questions,,and nobody around here seems to know any answers.

Thank y'all so much,for being here for me,,and I wish everyone a healthy new year and a cure for mito,,,and everything else that is robbing our kids of their childhood !

Kim mom to Meaghan 15 ~~Katelyn 12 Bipolar,and OCD ~~ Logan 7 Autism,congenital myopathy,possible mitochondrial disease,and JRA ~~ and Ethan 5 and 100 % BOY

__________________________________________________

[Guest guest]

Kim, since you take Logan to Cook's in Ft.Worth have your doctor talk with Dr. Ryals (neo) or even Dr. Marks. Dr. Marks is over MDA but is informed in Mito.Kim wrote:

Thank all of y'all so much,for the replies. Logan got up today,,and was fine,,other than the cough. His legs weren't hurting anymore,,and he was able to talk without losing his breath. I called the Dr,,and he asked lots of questions about the cough (is it tight,wet,dry,short,hacking,barking cough,,etc) He called a prescription in for a cough med,,and told me that if he is no better by this weekend that he wants to see him,,or if he has another episode of not being able to talk,,to call immediately.

Now,,the thing I found interesting,is that all of y'all say that the leg pain is common with mito,,but of course,,we don't have the "official" mito dx,,so I wanted to know what his ped would have to say about it. He said that he thinks it is just "another one of those Logan things,,that happens when he gets sick" I disagree,and think it is another indication that he truly has a mito disease.His ped is the most awesome man I know,,and I respect him,and trust him more than anyone,,but he will be the first one to admit that he doesn't know anything about mito. We were going to go to Cleveland this past Dec,,,but couldn't get insurance to pay for it,,and at the time,,Logan was doing really well. If this is going to be a recurring thing,,then we will have to fight insurance to pay,I guess. I was wondering if anyone here knows what kind of blood tests I can ask the ped to order,,that would "point " to mito. The only thing they have

done is the muscle biopsy,,and at the time,they were actually looking for a myopathy,,,so the discovery of the increased mito enzymes,,and the fiber type issue (he has more type 1 than 2 and the type 2 that he has shows mild to moderate atrophy) was kinda a surprise,,and no one seems to know what to do with that info. (How was that for a run on sentence ?)

Another question I have is this,,,do y'alls kids tend to slump,instead of sit ? He is always slumped down on the couch,the chair,,in the car,,even at the computer,,,I have no idea how he can even see the keyboard,,because he is basically laying down in the chair. His butt will be where his knees should be and his shoulders will be where his butt should be. I am constantly telling him to sit up ! Is that part of the weakness ? Its like his is a noodle,,that can't sit up ! I actually think it has gotten worse,,and I can't even imagine how much worse it would be,if he wasn't home schooled ! I think the Dr would really be noticing,the severity of the problem,,but as it is,,since we are home,,it isn't that big of a deal. He just rests as often as he needs to .

ANYWAY,,,I didn't mean to go on and on. I just have alot of questions,,and nobody around here seems to know any answers.

Thank y'all so much,for being here for me,,and I wish everyone a healthy new year and a cure for mito,,,and everything else that is robbing our kids of their childhood !

Kim mom to Meaghan 15 ~~Katelyn 12 Bipolar,and OCD ~~ Logan 7 Autism,congenital myopathy,possible mitochondrial disease,and JRA ~~ and Ethan 5 and 100 % BOY

__________________________________________________