Luke has pain -- any ideas?

[Guest guest]

Luke is 9 and diagnoses with Unsped. Mito. Past several months he

has been complaining of leg pains -- either in his calf or bone/shin

area. Give him tylenol about 3 times a week for it. Really

havne't thought much about it -- chalked it up to growing pains.

This past weekend he started complaining about his knuckles in both

hands hurting and about the same place on his feet. My DH took him

to the local clinic Monday when he went (really thought it was no

big deal) and they thought maybe JRA and did blood work. Blood work

came back negative for arthritis. He has also been what I

called " grey " with dark circles (doctor today called him almost

green). Didn't like the PA at the clinic answers todays so called

our PED and took him in. Originally thought some sort of viral

induced arthritis also, but no swelling or heat. Did a CBC (yes,

you would have thought that the clinic would have done it on Monday

with the other blood panels...nope!) as they wanted to make sure he

wasn't anemic, mono test, thyroid panel (he's very tired), and

lactic acid. He's not anemic and mono was negative....others will

be back tomorrow. Last night Luke was in so much pain he cried

himself to sleep and we are traveling the same road tonight...can't

give him anymore med and we have already been in the tub -- he

HURTS. Any ideas? What should I DO? This is hearwrenching to just

listen to him......

Sorry this is so jarbled, but I am frustrated..... dont' know if I

should call the doctor back tonight or what......

[Guest guest]

Luke is 9 and diagnoses with Unsped. Mito. Past several months he

has been complaining of leg pains -- either in his calf or bone/shin

area. Give him tylenol about 3 times a week for it. Really

havne't thought much about it -- chalked it up to growing pains.

This past weekend he started complaining about his knuckles in both

hands hurting and about the same place on his feet. My DH took him

to the local clinic Monday when he went (really thought it was no

big deal) and they thought maybe JRA and did blood work. Blood work

came back negative for arthritis. He has also been what I

called " grey " with dark circles (doctor today called him almost

green). Didn't like the PA at the clinic answers todays so called

our PED and took him in. Originally thought some sort of viral

induced arthritis also, but no swelling or heat. Did a CBC (yes,

you would have thought that the clinic would have done it on Monday

with the other blood panels...nope!) as they wanted to make sure he

wasn't anemic, mono test, thyroid panel (he's very tired), and

lactic acid. He's not anemic and mono was negative....others will

be back tomorrow. Last night Luke was in so much pain he cried

himself to sleep and we are traveling the same road tonight...can't

give him anymore med and we have already been in the tub -- he

HURTS. Any ideas? What should I DO? This is hearwrenching to just

listen to him......

Sorry this is so jarbled, but I am frustrated..... dont' know if I

should call the doctor back tonight or what......

[Guest guest]

gets spells (not as bad as that) of leg pain and i suspect

joint pain...

the only thing that i have found helpful so far is A535 (Ben Gay)...

and heating pads...

I know its like bailing out the titanic with a spoon, but anything

helps right?

when hes sore we rub it on his calves and thighs, and it does seem

to help him... he will actually bring me the tube of Ben Gay (hes

only 2)when hes hurting...

hot baths with baking soda also seems to be helpful...

the only other thing we use is something called Arnica Lotion, its

similar to Ben Gay but has more of a longer lasting affect... it

also seems to provide some relief...

at worst we will occasionally give him motrin, but our doctor doesnt

want us using it unless he has a fever, as he needs it to work when

his temp is high.

Its so hard to see them hurting and not be able to fix it...

I hope they figure something out for Luke...

Keely

>

> Luke is 9 and diagnoses with Unsped. Mito. Past several months he

> has been complaining of leg pains -- either in his calf or

bone/shin

> area. Give him tylenol about 3 times a week for it. Really

> havne't thought much about it -- chalked it up to growing pains.

> This past weekend he started complaining about his knuckles in

both

> hands hurting and about the same place on his feet. My DH took

him

> to the local clinic Monday when he went (really thought it was no

> big deal) and they thought maybe JRA and did blood work. Blood

work

> came back negative for arthritis. He has also been what I

> called " grey " with dark circles (doctor today called him almost

> green). Didn't like the PA at the clinic answers todays so called

> our PED and took him in. Originally thought some sort of viral

> induced arthritis also, but no swelling or heat. Did a CBC (yes,

> you would have thought that the clinic would have done it on

Monday

> with the other blood panels...nope!) as they wanted to make sure

he

> wasn't anemic, mono test, thyroid panel (he's very tired), and

> lactic acid. He's not anemic and mono was negative....others will

> be back tomorrow. Last night Luke was in so much pain he cried

> himself to sleep and we are traveling the same road

tonight...can't

> give him anymore med and we have already been in the tub -- he

> HURTS. Any ideas? What should I DO? This is hearwrenching to

just

> listen to him......

>

> Sorry this is so jarbled, but I am frustrated..... dont' know if

I

> should call the doctor back tonight or what......

[Guest guest]

gets spells (not as bad as that) of leg pain and i suspect

joint pain...

the only thing that i have found helpful so far is A535 (Ben Gay)...

and heating pads...

I know its like bailing out the titanic with a spoon, but anything

helps right?

when hes sore we rub it on his calves and thighs, and it does seem

to help him... he will actually bring me the tube of Ben Gay (hes

only 2)when hes hurting...

hot baths with baking soda also seems to be helpful...

the only other thing we use is something called Arnica Lotion, its

similar to Ben Gay but has more of a longer lasting affect... it

also seems to provide some relief...

at worst we will occasionally give him motrin, but our doctor doesnt

want us using it unless he has a fever, as he needs it to work when

his temp is high.

Its so hard to see them hurting and not be able to fix it...

I hope they figure something out for Luke...

Keely

>

> Luke is 9 and diagnoses with Unsped. Mito. Past several months he

> has been complaining of leg pains -- either in his calf or

bone/shin

> area. Give him tylenol about 3 times a week for it. Really

> havne't thought much about it -- chalked it up to growing pains.

> This past weekend he started complaining about his knuckles in

both

> hands hurting and about the same place on his feet. My DH took

him

> to the local clinic Monday when he went (really thought it was no

> big deal) and they thought maybe JRA and did blood work. Blood

work

> came back negative for arthritis. He has also been what I

> called " grey " with dark circles (doctor today called him almost

> green). Didn't like the PA at the clinic answers todays so called

> our PED and took him in. Originally thought some sort of viral

> induced arthritis also, but no swelling or heat. Did a CBC (yes,

> you would have thought that the clinic would have done it on

Monday

> with the other blood panels...nope!) as they wanted to make sure

he

> wasn't anemic, mono test, thyroid panel (he's very tired), and

> lactic acid. He's not anemic and mono was negative....others will

> be back tomorrow. Last night Luke was in so much pain he cried

> himself to sleep and we are traveling the same road

tonight...can't

> give him anymore med and we have already been in the tub -- he

> HURTS. Any ideas? What should I DO? This is hearwrenching to

just

> listen to him......

>

> Sorry this is so jarbled, but I am frustrated..... dont' know if

I

> should call the doctor back tonight or what......

[Guest guest]

Hello! We really feel you pain right now!!!!!

Dakota my 11 year old, which has never been tested for Mito. Has only ever showed soft signs, yet his 5 year old brother (Joey) has bee dx with Mito.

I Sept. Dakota came home from school with a weird looking rash all over his whole body, by that night it turned purple and looked like a hickia all over his body. I took him to the doctor and he explained to me it was called Pateciea(sp?). Small blood vessels were bursting just under his skin. The rash only lasted 4 days, yet left him in a great deal of pain...horrible knee and hip pain. And horrible headaches. He has developed the rash 3 more more times since then. Yet his energy level has never been the same since then and he has had horrible joint pain EVERY day since then. Tylenol will not touch his pain, yet since he may have some bllod issue we can only give him one Aleve in 24 hours. The Aleve really helps joint pain much better than Tynenol. Just always make sure to never exeed the amount on the box.

They also test Dakota for Arthritis, I think though a ANA screening, in which was negative. Yet I guess this test is not real acurate, I guess you can get a false reading. Yet his SED rate is high. They also checked him for Strep, Mono, Thyroid and Parvovirus...which was all Negative. Dakota WBC and RBC are some low. And his BAND rate is also high...something about he is developing too many small tiny red blood cells. His Lymphocyte rate is Low...yet I'm not real sue what the means. His ESR rate is also high...not real sure what that one mean either.

Dakota is also up many night in ALOT of pain. And this kid kis is one of the tuffest kids you will ever meet...so I know he is in alot of pain. We are taking him to Jewish Hospital in St. Louis this Tuesday...hopefully to get some answers.

Do you know what other test they did on Luke? Maybe this may tell them something. We can only hope. It is soooo hard to see your kid in pain and not much we can do about it. I will say a HUGE prayer for you guys today. Hope you find some answers.

God Bless!! Tamaramykidzx5 wrote:

Luke is 9 and diagnoses with Unsped. Mito. Past several months he has been complaining of leg pains -- either in his calf or bone/shin area. Give him tylenol about 3 times a week for it. Really havne't thought much about it -- chalked it up to growing pains. This past weekend he started complaining about his knuckles in both hands hurting and about the same place on his feet. My DH took him to the local clinic Monday when he went (really thought it was no big deal) and they thought maybe JRA and did blood work. Blood work came back negative for arthritis. He has also been what I called "grey" with dark circles (doctor today called him almost green). Didn't like the PA at the clinic answers todays so called our PED and took him in. Originally thought some sort of viral

induced arthritis also, but no swelling or heat. Did a CBC (yes, you would have thought that the clinic would have done it on Monday with the other blood panels...nope!) as they wanted to make sure he wasn't anemic, mono test, thyroid panel (he's very tired), and lactic acid. He's not anemic and mono was negative....others will be back tomorrow. Last night Luke was in so much pain he cried himself to sleep and we are traveling the same road tonight...can't give him anymore med and we have already been in the tub -- he HURTS. Any ideas? What should I DO? This is hearwrenching to just listen to him......Sorry this is so jarbled, but I am frustrated..... dont' know if I should call the doctor back tonight or what......Please contact mito-owner with any problems or questions. __________________________________________________

[Guest guest]

Hello! We really feel you pain right now!!!!!

Dakota my 11 year old, which has never been tested for Mito. Has only ever showed soft signs, yet his 5 year old brother (Joey) has bee dx with Mito.

I Sept. Dakota came home from school with a weird looking rash all over his whole body, by that night it turned purple and looked like a hickia all over his body. I took him to the doctor and he explained to me it was called Pateciea(sp?). Small blood vessels were bursting just under his skin. The rash only lasted 4 days, yet left him in a great deal of pain...horrible knee and hip pain. And horrible headaches. He has developed the rash 3 more more times since then. Yet his energy level has never been the same since then and he has had horrible joint pain EVERY day since then. Tylenol will not touch his pain, yet since he may have some bllod issue we can only give him one Aleve in 24 hours. The Aleve really helps joint pain much better than Tynenol. Just always make sure to never exeed the amount on the box.

They also test Dakota for Arthritis, I think though a ANA screening, in which was negative. Yet I guess this test is not real acurate, I guess you can get a false reading. Yet his SED rate is high. They also checked him for Strep, Mono, Thyroid and Parvovirus...which was all Negative. Dakota WBC and RBC are some low. And his BAND rate is also high...something about he is developing too many small tiny red blood cells. His Lymphocyte rate is Low...yet I'm not real sue what the means. His ESR rate is also high...not real sure what that one mean either.

Dakota is also up many night in ALOT of pain. And this kid kis is one of the tuffest kids you will ever meet...so I know he is in alot of pain. We are taking him to Jewish Hospital in St. Louis this Tuesday...hopefully to get some answers.

Do you know what other test they did on Luke? Maybe this may tell them something. We can only hope. It is soooo hard to see your kid in pain and not much we can do about it. I will say a HUGE prayer for you guys today. Hope you find some answers.

God Bless!! Tamaramykidzx5 wrote:

Luke is 9 and diagnoses with Unsped. Mito. Past several months he has been complaining of leg pains -- either in his calf or bone/shin area. Give him tylenol about 3 times a week for it. Really havne't thought much about it -- chalked it up to growing pains. This past weekend he started complaining about his knuckles in both hands hurting and about the same place on his feet. My DH took him to the local clinic Monday when he went (really thought it was no big deal) and they thought maybe JRA and did blood work. Blood work came back negative for arthritis. He has also been what I called "grey" with dark circles (doctor today called him almost green). Didn't like the PA at the clinic answers todays so called our PED and took him in. Originally thought some sort of viral

induced arthritis also, but no swelling or heat. Did a CBC (yes, you would have thought that the clinic would have done it on Monday with the other blood panels...nope!) as they wanted to make sure he wasn't anemic, mono test, thyroid panel (he's very tired), and lactic acid. He's not anemic and mono was negative....others will be back tomorrow. Last night Luke was in so much pain he cried himself to sleep and we are traveling the same road tonight...can't give him anymore med and we have already been in the tub -- he HURTS. Any ideas? What should I DO? This is hearwrenching to just listen to him......Sorry this is so jarbled, but I am frustrated..... dont' know if I should call the doctor back tonight or what......Please contact mito-owner with any problems or questions. __________________________________________________

[Guest guest]

I do not know much in detail but I will share with you my experience. Samya

complained about pain in her calves that came on suddenly, would last for

varying amount of time and then disappear just as fast. This also came with

inability to walk with stiffness as if her legs were like " jello'. This

started about 2 years before she died and we had no diagnosis of mito and

all tests were done and everything was always normal. We got no answers and

these episode increased over the next 2 years and at the time we were told

it was all psychological for attention . Leanna, with the same diagnosis,

just started a little less than a year ago with the same exact thing and she

cannot walk for a day on average and she hurts and yes not tyloenol or

motrin ever helps. I do not know if this is the same, but with us the mito

doc called it neuropathy and it just happens with no rhyme or reason and is

not even fatigue related and there is nothing I can do except not force her

to walk and hope it goes away but I know from experience with Samya one day

it will happen and will not go away. I hope that helps. Good luck with poor

Luke. It breaks my heart so t know they hurt so much and we are so helpless

to change it.

 

 

Suhad Haddad  --  Mom to Samya (Died 12-10-02 of Leigh's Synd.) & Leanna

with same disease.

Samya's Memorial Site: www.samyahaddad.com/.org/.net

Email: Suhad1970@...

Alt Email: Suhad@...

AiM Chat: Suhad1970

Luke has pain -- any ideas?

Luke is 9 and diagnoses with Unsped. Mito. Past several months he

has been complaining of leg pains -- either in his calf or bone/shin

area. Give him tylenol about 3 times a week for it. Really

havne't thought much about it -- chalked it up to growing pains.

This past weekend he started complaining about his knuckles in both

hands hurting and about the same place on his feet. My DH took him

to the local clinic Monday when he went (really thought it was no

big deal) and they thought maybe JRA and did blood work. Blood work

came back negative for arthritis. He has also been what I

called " grey " with dark circles (doctor today called him almost

green). Didn't like the PA at the clinic answers todays so called

our PED and took him in. Originally thought some sort of viral

induced arthritis also, but no swelling or heat. Did a CBC (yes,

you would have thought that the clinic would have done it on Monday

with the other blood panels...nope!) as they wanted to make sure he

wasn't anemic, mono test, thyroid panel (he's very tired), and

lactic acid. He's not anemic and mono was negative....others will

be back tomorrow. Last night Luke was in so much pain he cried

himself to sleep and we are traveling the same road tonight...can't

give him anymore med and we have already been in the tub -- he

HURTS. Any ideas? What should I DO? This is hearwrenching to just

listen to him......

Sorry this is so jarbled, but I am frustrated..... dont' know if I

should call the doctor back tonight or what......

Please contact mito-owner with any problems or questions.

[Guest guest]

I do not know much in detail but I will share with you my experience. Samya

complained about pain in her calves that came on suddenly, would last for

varying amount of time and then disappear just as fast. This also came with

inability to walk with stiffness as if her legs were like " jello'. This

started about 2 years before she died and we had no diagnosis of mito and

all tests were done and everything was always normal. We got no answers and

these episode increased over the next 2 years and at the time we were told

it was all psychological for attention . Leanna, with the same diagnosis,

just started a little less than a year ago with the same exact thing and she

cannot walk for a day on average and she hurts and yes not tyloenol or

motrin ever helps. I do not know if this is the same, but with us the mito

doc called it neuropathy and it just happens with no rhyme or reason and is

not even fatigue related and there is nothing I can do except not force her

to walk and hope it goes away but I know from experience with Samya one day

it will happen and will not go away. I hope that helps. Good luck with poor

Luke. It breaks my heart so t know they hurt so much and we are so helpless

to change it.

 

 

Suhad Haddad  --  Mom to Samya (Died 12-10-02 of Leigh's Synd.) & Leanna

with same disease.

Samya's Memorial Site: www.samyahaddad.com/.org/.net

Email: Suhad1970@...

Alt Email: Suhad@...

AiM Chat: Suhad1970

Luke has pain -- any ideas?

Luke is 9 and diagnoses with Unsped. Mito. Past several months he

has been complaining of leg pains -- either in his calf or bone/shin

area. Give him tylenol about 3 times a week for it. Really

havne't thought much about it -- chalked it up to growing pains.

This past weekend he started complaining about his knuckles in both

hands hurting and about the same place on his feet. My DH took him

to the local clinic Monday when he went (really thought it was no

big deal) and they thought maybe JRA and did blood work. Blood work

came back negative for arthritis. He has also been what I

called " grey " with dark circles (doctor today called him almost

green). Didn't like the PA at the clinic answers todays so called

our PED and took him in. Originally thought some sort of viral

induced arthritis also, but no swelling or heat. Did a CBC (yes,

you would have thought that the clinic would have done it on Monday

with the other blood panels...nope!) as they wanted to make sure he

wasn't anemic, mono test, thyroid panel (he's very tired), and

lactic acid. He's not anemic and mono was negative....others will

be back tomorrow. Last night Luke was in so much pain he cried

himself to sleep and we are traveling the same road tonight...can't

give him anymore med and we have already been in the tub -- he

HURTS. Any ideas? What should I DO? This is hearwrenching to just

listen to him......

Sorry this is so jarbled, but I am frustrated..... dont' know if I

should call the doctor back tonight or what......

Please contact mito-owner with any problems or questions.

[Guest guest]

Just before Christmas Amie's, son, non-mito and Audrey's big brother, was having pain in his legs, headache, dizzy, poor appetite, and dark circles under his eyes so Amie took him to the Ped and they also did a Mono test that was negative. They also did another test that is used for mono and for the life of me I can't remember the name of that test, but it took a few days for the results and Yep!!! he has mono. So just because the one test came back negative doesn't mean he for sure doesn't have it. You might want to ask the doc about the other test.

Kathy, grandma to Audrey, 3 yearsmykidzx5 wrote:

Luke is 9 and diagnoses with Unsped. Mito. Past several months he has been complaining of leg pains -- either in his calf or bone/shin area. Give him tylenol about 3 times a week for it. Really havne't thought much about it -- chalked it up to growing pains. This past weekend he started complaining about his knuckles in both hands hurting and about the same place on his feet. My DH took him to the local clinic Monday when he went (really thought it was no big deal) and they thought maybe JRA and did blood work. Blood work came back negative for arthritis. He has also been what I called "grey" with dark circles (doctor today called him almost green). Didn't like the PA at the clinic answers todays so called our PED and took him in. Originally thought some sort of viral

induced arthritis also, but no swelling or heat. Did a CBC (yes, you would have thought that the clinic would have done it on Monday with the other blood panels...nope!) as they wanted to make sure he wasn't anemic, mono test, thyroid panel (he's very tired), and lactic acid. He's not anemic and mono was negative....others will be back tomorrow. Last night Luke was in so much pain he cried himself to sleep and we are traveling the same road tonight...can't give him anymore med and we have already been in the tub -- he HURTS. Any ideas? What should I DO? This is hearwrenching to just listen to him......Sorry this is so jarbled, but I am frustrated..... dont' know if I should call the doctor back tonight or what......Please contact mito-owner with any problems or questions.

[Guest guest]

Just before Christmas Amie's, son, non-mito and Audrey's big brother, was having pain in his legs, headache, dizzy, poor appetite, and dark circles under his eyes so Amie took him to the Ped and they also did a Mono test that was negative. They also did another test that is used for mono and for the life of me I can't remember the name of that test, but it took a few days for the results and Yep!!! he has mono. So just because the one test came back negative doesn't mean he for sure doesn't have it. You might want to ask the doc about the other test.

Kathy, grandma to Audrey, 3 yearsmykidzx5 wrote:

Luke is 9 and diagnoses with Unsped. Mito. Past several months he has been complaining of leg pains -- either in his calf or bone/shin area. Give him tylenol about 3 times a week for it. Really havne't thought much about it -- chalked it up to growing pains. This past weekend he started complaining about his knuckles in both hands hurting and about the same place on his feet. My DH took him to the local clinic Monday when he went (really thought it was no big deal) and they thought maybe JRA and did blood work. Blood work came back negative for arthritis. He has also been what I called "grey" with dark circles (doctor today called him almost green). Didn't like the PA at the clinic answers todays so called our PED and took him in. Originally thought some sort of viral

induced arthritis also, but no swelling or heat. Did a CBC (yes, you would have thought that the clinic would have done it on Monday with the other blood panels...nope!) as they wanted to make sure he wasn't anemic, mono test, thyroid panel (he's very tired), and lactic acid. He's not anemic and mono was negative....others will be back tomorrow. Last night Luke was in so much pain he cried himself to sleep and we are traveling the same road tonight...can't give him anymore med and we have already been in the tub -- he HURTS. Any ideas? What should I DO? This is hearwrenching to just listen to him......Sorry this is so jarbled, but I am frustrated..... dont' know if I should call the doctor back tonight or what......Please contact mito-owner with any problems or questions.

[Guest guest]

I hate seeing my kids suffer with muscle pain too. It is hard to want

to help but not have the ability. It seems that Mito holds so many

variables and unknowns from day to day. One day they can be fine and the

next really struggling with migraines or pains of many sorts. I don't have

any suggestions as Ben Gay is also what has helped me in the past and we

haven't tried any forms of medications other than Tylenol for muscle pain.

Hope you are able to get the pain under control.

See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org to see

a photo look into what Mito looks like

Darla: mommy to

Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomy, SID, global delays, asthma, cyclic vomiting,

bladder issues, wheelchair for distances, eye issues, autistic behaviors,

gastric emptying issues...

Zipporrah (14 months) Mito, strokes, neuro-motor planning dys., SID, GERD,

dysphasia, 100% G-tube fed, speech delays, extreme fatigue, excessive

phlegm, asthma, trach issues, aberrant subclavian artery, disautonomy,

hypertonicity, migraines, possible seizures, dumping syndrome, iron

deficiency, ...

Luke (16), Leah (14), Rachael (13), Isaac (10), Tirzah (8), Kezia (4), &

Marquis (3), Joey & (12 months) (some with Mito symptoms)

Luke has pain -- any ideas?

>

>

> Luke is 9 and diagnoses with Unsped. Mito. Past several months he

> has been complaining of leg pains -- either in his calf or bone/shin

> area. Give him tylenol about 3 times a week for it. Really

> havne't thought much about it -- chalked it up to growing pains.

> This past weekend he started complaining about his knuckles in both

> hands hurting and about the same place on his feet. My DH took him

> to the local clinic Monday when he went (really thought it was no

> big deal) and they thought maybe JRA and did blood work. Blood work

> came back negative for arthritis. He has also been what I

> called " grey " with dark circles (doctor today called him almost

> green). Didn't like the PA at the clinic answers todays so called

> our PED and took him in. Originally thought some sort of viral

> induced arthritis also, but no swelling or heat. Did a CBC (yes,

> you would have thought that the clinic would have done it on Monday

> with the other blood panels...nope!) as they wanted to make sure he

> wasn't anemic, mono test, thyroid panel (he's very tired), and

> lactic acid. He's not anemic and mono was negative....others will

> be back tomorrow. Last night Luke was in so much pain he cried

> himself to sleep and we are traveling the same road tonight...can't

> give him anymore med and we have already been in the tub -- he

> HURTS. Any ideas? What should I DO? This is hearwrenching to just

> listen to him......

>

> Sorry this is so jarbled, but I am frustrated..... dont' know if I

> should call the doctor back tonight or what......

>

>

>

>

>

>

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

>

[Guest guest]

I hate seeing my kids suffer with muscle pain too. It is hard to want

to help but not have the ability. It seems that Mito holds so many

variables and unknowns from day to day. One day they can be fine and the

next really struggling with migraines or pains of many sorts. I don't have

any suggestions as Ben Gay is also what has helped me in the past and we

haven't tried any forms of medications other than Tylenol for muscle pain.

Hope you are able to get the pain under control.

See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org to see

a photo look into what Mito looks like

Darla: mommy to

Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomy, SID, global delays, asthma, cyclic vomiting,

bladder issues, wheelchair for distances, eye issues, autistic behaviors,

gastric emptying issues...

Zipporrah (14 months) Mito, strokes, neuro-motor planning dys., SID, GERD,

dysphasia, 100% G-tube fed, speech delays, extreme fatigue, excessive

phlegm, asthma, trach issues, aberrant subclavian artery, disautonomy,

hypertonicity, migraines, possible seizures, dumping syndrome, iron

deficiency, ...

Luke (16), Leah (14), Rachael (13), Isaac (10), Tirzah (8), Kezia (4), &

Marquis (3), Joey & (12 months) (some with Mito symptoms)

Luke has pain -- any ideas?

>

>

> Luke is 9 and diagnoses with Unsped. Mito. Past several months he

> has been complaining of leg pains -- either in his calf or bone/shin

> area. Give him tylenol about 3 times a week for it. Really

> havne't thought much about it -- chalked it up to growing pains.

> This past weekend he started complaining about his knuckles in both

> hands hurting and about the same place on his feet. My DH took him

> to the local clinic Monday when he went (really thought it was no

> big deal) and they thought maybe JRA and did blood work. Blood work

> came back negative for arthritis. He has also been what I

> called " grey " with dark circles (doctor today called him almost

> green). Didn't like the PA at the clinic answers todays so called

> our PED and took him in. Originally thought some sort of viral

> induced arthritis also, but no swelling or heat. Did a CBC (yes,

> you would have thought that the clinic would have done it on Monday

> with the other blood panels...nope!) as they wanted to make sure he

> wasn't anemic, mono test, thyroid panel (he's very tired), and

> lactic acid. He's not anemic and mono was negative....others will

> be back tomorrow. Last night Luke was in so much pain he cried

> himself to sleep and we are traveling the same road tonight...can't

> give him anymore med and we have already been in the tub -- he

> HURTS. Any ideas? What should I DO? This is hearwrenching to just

> listen to him......

>

> Sorry this is so jarbled, but I am frustrated..... dont' know if I

> should call the doctor back tonight or what......

>

>

>

>

>

>

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

>