Re: Hi/New here/long intro

[Guest guest]

Welcome...which is always a double edged sword...so sorry you are here but you

will learn so much here.

I am sorry your daughter has JIA added onto her other struggles. My little guy

has been on Enbrel & MTX since July 2009...and it is our miracle drug combo.

He's only had one minor flare since we started this combo and was able to be

taken off the naproxen in November 2009. We tried weaning him from the mtx

earlier this year but he started flaring so he takes just .2 (injection) weekly.

While he still gets fatigued...he has more energy than he's ever had. We haven't

had to use a stroller/wheelchair since last December (and that was because we

were at Disney)...so things are truly much better than before.

Enbrel is scary but JIA and it's damage is scarier.

All the best,

& , 7, plus a bunch of other stuff

Sent from my iPhone

[Guest guest]

It sounds like your little one is one tough cookie. It always amazes me to how

brave some kids really are. My name is Shea (Shay) and I am 13 with arthritis.

There are lots of moms on here who always have great advice. I was diagnosed

last year and May of last year my school of 7years asked me to leave, when it

came to accommodations the school wouldn't budge.

Welcome to the group, we are always only an email away.

Best wishes

Shea

Sent from my iPad

On Dec 30, 2010, at 5:46 PM, Kass <kass@...> wrote:

Hi All,

While I wish I didn’t have a need to be here, I am relieved to find a list

where I can learn more about my daughter’s JIA. I am looking forward to

getting to know everyone and thank you in advance for reading our story.

My name is and I am the proud mom to three amazing kiddo’s....Chance

is 17, Abigail is about to turn 13, and Madison is 14 (and the reason I am

here). All three kids have a Mitochondrial Disease (Mito for short) that

affects virtually every organ system. For those that don’t know, a brief

explanation of mito.....we have mitochondria in all of our cells except for

our red blood cells. Within the mitochondria, the food we eat & oxygen that

we breath is converted into a chemical the cells can use for energy. When

there is a disease of the mitochondria, not enough energy is able to be

produced and this can cause problems with function in every system of the

body. While not always the course, in our case it has been progressive and

degenerative and the kids have dealt with more and more medical issues as

the years have gone by. The kids were given a “Presumed†Mito dx in 2001 at

the Cleveland Clinic where we received care for a couple of years, then were

taken care of by a doctor at the Mayo Clinic in Minnesota for a couple of

years, and have been receiving mito specific care in Houston now since the

beginning of 2008 where we were finally able to confirm their mitochondrial

disease via genetics. I have been married to my DH for 22 years, and we

have lived in the Dallas area the entire time. The kids currently have a

specialist in almost every specialty, with some in Dallas, some in Ft.

Worth, and some in Houston.

Miss Madison brings me to this group. In August of 2008 she mentioned that

the joint below her big toe on one foot was hurting her. Generally

speaking, due to extensive neuropathy, even when injured there are few (if

any) complaints about pain in that area of her body, so I took note. Upon

looking at the joint it actually looked as though she might have dislocated

it and while there was swelling, there was no bruising and she had no

knowledge of having injured it. I took her to urgent care for an xray,

thinking it was something simple, and while they were able to tell me that

there was no dislocation or break which was good, they felt it looked like

she had tendonitis. With that we did the usual routine for the care of

tendonitis and I honestly didn’t worry about it.

A week or so later our pediatrician asked to see her to examine the foot

herself. Upon exam she noted that there was still fluid on the joint, as

well as crepitus, and she felt there was something more going on. Upon the

advice of the orthopedic she was sending us to, we were sent for an xray &

sonogram of the joint. We saw the orthopedic and the primary concern was

that she might have Gout, but there was not enough fluid on the joint to get

a sample at that time, but we were sent for blood work to see what that

might show us. Blood work indicated something inflammatory going on and we

were immediately referred to a rheumatologist.

Thankfully we were able to see one quickly in Houston who has knowledge of

mitochondrial disease, something always important to the big picture. He’s

young and a new “real†doctor, and while those are not always my favorites,

in this case it was the perfect match. He had the time and was willing to

consult with all the other doctors he could find to try and figure my girl

out.

By December, Madison’s left knee had become involved and there was little

doubt we were dealing with arthritis. The problem was/is, there are no

documented cases of arthritis in a mitochondrial disease kiddo. Lots and

lots of “inflammatory†issues in the mom’s and families, but not something

seen in the kids dealing with this disease. With that we needed to be very

sure there was not some other factor playing a part. An MRI was done of the

knee and the decision made to biopsy the synovium of the knee to be sure

there was no infection lingering in there causing the problem. She

tolerated the surgery well and other than inflammation, the synovial tissue

was clear of infection.

By September we had started on NSAID’s, however, to further complicate

things, Madison was not tolerating them without regular GI bleeding, and

cannot take Tylenol for more than a week or two because the liver is very

susceptible to problems due to the mito. This put us in a pickle as we

tried to keep the pain of the arthritis under control. Once we had the

biopsy done showing no infection, we had the choice to either do long acting

steroid injections to the knee, or start her on weekly subcutaneous

injections of Methotrexate. While our choice was to try the injections to

the knee, unfortunately the long acting steroid we needed to use was not

available at the time, so we went ahead and started the Methotrexate.

Within three weeks Madison was giving herself the injection weekly....so

proud of her!!

Unfortunately, the MTX caused a great deal of nausea that we really

struggled to control. She was started on Folic Acid at the same time as the

mtx, and pretty quickly that dose was increased and we started playing with

pre- & post- dosing with Zofran to try and control the nausea. For a little

while pre-dosing with the Zofran, then taking it morning and night for the

following two days seemed to keep things in check (at least at a tolerable

level). When that regime started to fail we added in Leucovor and Phenergan

with some success. Ultimately, oddly enough, when she stopped eating meat

(upon realizing that the nausea always got worse after a meal with meat) we

finally got some relief from the constant nausea for a little while. It is

not completely controlled, but tons better as long as she eats little or no

meat.

Other than the nausea though, things seemed to be going pretty well. While

her knee and toe joint remained somewhat swollen all the time, she was not

having pain and was moving as well as she ever has (due to the muscle

component of her mito she has never been real active and usually uses a

wheel chair for distance walking).

However, in August her left knee re-flared and her right knee joined in on

the fun. :-(

MTX was increased and we were then given the choice of either trying again

for the steroid injections or Enbrel being added to the mix. After a lot of

thought and confirming we could get the type of steroid our rheumy wanted,

we decided to try the injections, although now it would be both knees at the

same time. The plan was to do the injections and keep her on the weekly mtx

and see how she does. If she can make it 6 months in between injections, we

can stay with this plan, however if she breaks through before the 6 month

mark our rheumy feels like we need to then consider the Enbrel. We did the

injections earlier this month and she tolerated them beautifully (one of

those times when neuropathy is a GOOD thing)....and now we wait to see what

happens.

While the arthritis is being called JIA, the doctors do feel like this is

part of her mitochondrial disease, for what that matters.

To complicate matters, she was already immune compromised before the

arthritis revealed itself. We had been incredibly fortunate that none of

the three had really dealt with regular illness before January of 2008. In

part this was because they have been home schooled for so long, we are

religious about hand washing and disinfecting, and we avoid sick people.

With mito any illness, even a minor one, can cause significant decline and

even death, so keeping them healthy as much as possible has been a primary

goal of care. And we had been really successful in this respect.

Unfortunately Madison contracted both Mononucleosis and a Mycoplasma

infection (walking pneumonia) at the same time in late 2007/early 2008.

This would be a bad combo for anyone, but for her it really, really took her

downhill. Not only did we start having constant infections, but the stress

on her system from the infections caused her to develop Dilated

Cardiomyopathy & early Heart Failure, respiratory weakness (uses Bipap &

oxygen at night), we had the first flare of her arthritis, and has caused

profound fatigue that is ever present. She was already a low energy kid in

general, since early 2008, her energy level is virtually nonexistent. I

have lost count of how many antibiotics she has been on in the last two

years, and we are now ending up inpatient on a regular basis with high

fevers, rigors, and blood pressures dropping to scary levels. And with

another nose dive in energy a few weeks ago (just when I think she cannot

get any more fatigued) we learned last week that she again has an acute

Mycoplasma infection (walking pneumonia). And because the hits just keep on

coming, she has now contracted the head cold her sister came down with 2

weeks ago and has been teetering on the edge of needing to be inpatient

again (our only saving grace is that she has a feeding tube and I am able to

keep her hydrated through the tube).

All this to say, adding Enbrel scares the heck out of me!!

At the same time though, the feeling is that part of her continued issues

with fatigue, even during a few months this last summer when we finally had

a reprieve from the constant infections, is due to a combination of the

heart issues and the arthritis still being active. All we have ever known

with Madison is as a fatigued child, however this level of fatigue she is

dealing with now is affecting her academically for the first time. After

about an hour of school work she is simply shutting down cognitively and if

pushed she, a. cannot do the work, and b. is physically, emotionally and

mentally so spent, nothing else can be planned for the day. We adjust to

“new normal’s†all the time, and some new normals are pretty crappy, but

this is one that we are struggling with because it’s impacting her quality

of life.

Well, I think I have likely shared more than anyone needed to know at this

point!!! Madison is a fighter, in every sense of the word, and I could not

be more proud of the young lady she is. She wakes with a smile and

generally keeps one on her face, even when she feels like crap. I am

finally getting a little window of opportunity to try and learn more about

this aspect of her care, and am looking forward to learning more from you

all. If nothing else, having somewhere to vent when she is having a bad day

would make a world of difference!!

Thanks for reading if you have made it this far!!!

BIG hugs,

, proud mom to Chance(17-Mito), Madison(14-Mito/JIA) &

Abigail(12-Mito)

[Guest guest]

,

I am so sorry to hear that you are having to deal with yet another health issue

for your daughter. My heart goes out to you and your family. My daughter

Jaye was diagnosed with JIA five years ago. She does have other health issues

but not to the extent of Madison. My daughter is on several medications and I

had adding more for any reason but we tend to keep adding. Jaye tried all

the different Nsaids for her arthritis at one time or another, but they have not

worked enough. We finally tried Meloxicam and for a while it worked for her, she

was also on folic acid and prevacid for her tummy issues. She has a seizure

disorder also and so is on meds for that. She has been on methotrexate for over

a year now, and then started Enbrel just a month ago. Everytime we put her on a

high dose of steroids she does wonderful until after the taper and she is back

to where she was. We tried a very low does of steroids and did not see any

affect so that is when we decided to start the Enbrel. She will have her 4th

injection tonight or maybe tomorrow. We have hopes of taking her off of

something she is on soon. She always takes her meds when I give them to her and

she never complains about them. Now, if I go to bed early and expect her to get

her oral meds on her own she may " forget " . Since we started the Enbrel I have

noticed an improvement in Jaye's fatigue. She has been one to take a nap

four or five days per week after sleeping a good 8 to 10 hours at night and

still be exhausted. Since she is 16 I am not generally home when she comes home

from school, I am at work and so had not noticed that she has basically quit

napping. She told me the other day that she felt good that she did not need to

nap. Then yesterday she napped for about four hours so not sure what that was

aabout. All this to say that if you do start the Enbrel I pray that it will

help with the fatigue for Madison. So many of the mom's on this site have such

good comments about Enbrel.

Welcome to this list. I know nothing about Mitochondiral Disease but do know a

bit about JIA, Asthma, Seizure Disorders, Pneumonia and all the other typical

kid related illnesses. I am a mom to five kids with Jaye being my

youngest so I have been able to devote the time to her that she needs. Well most

times. All of my sick days at work and a large part of my vacation days are

devoted to days off to take her to her doctor appointments. We see a pediatric

rheumatologist in Kansas City and so have to drive three hours each way.

Although it is a long drive, gas is expensive and I hate ddriving in the ice and

snow (winter time frustrations), I cherish the time that I get to spend with

Jaye. Often it is one on one and other times we take her older sister

with us and make a mini vacation. I am so glad that you found a specialist

that you like and that has the time necessary for you and your daughter.

Trusting your doctor is so important and havign one that gives you the time you

need is such a blessing. Every child on this list is different, the way the

disease affects them is different and the other health issues they have are

different. There are so many mom's, some dad's and some adult JIA members that

have lived with this disease for so many years that will support you and

encourage you. Ask any questions you have and share your input as well, that is

how this works.

Veri & Jaye 16 poly

Hi/New here/long intro

Hi All,

While I wish I didn¹t have a need to be here, I am relieved to find a list

where I can learn more about my daughter¹s JIA. I am looking forward to

getting to know everyone and thank you in advance for reading our story.

My name is and I am the proud mom to three amazing kiddo¹s....Chance

is 17, Abigail is about to turn 13, and Madison is 14 (and the reason I am

here). All three kids have a Mitochondrial Disease (Mito for short) that

affects virtually every organ system. For those that don¹t know, a brief

explanation of mito.....we have mitochondria in all of our cells except for

our red blood cells. Within the mitochondria, the food we eat & oxygen that

we breath is converted into a chemical the cells can use for energy. When

there is a disease of the mitochondria, not enough energy is able to be

produced and this can cause problems with function in every system of the

body. While not always the course, in our case it has been progressive and

degenerative and the kids have dealt with more and more medical issues as

the years have gone by. The kids were given a ³Presumed² Mito dx in 2001 at

the Cleveland Clinic where we received care for a couple of years, then were

taken care of by a doctor at the Mayo Clinic in Minnesota for a couple of

years, and have been receiving mito specific care in Houston now since the

beginning of 2008 where we were finally able to confirm their mitochondrial

disease via genetics. I have been married to my DH for 22 years, and we

have lived in the Dallas area the entire time. The kids currently have a

specialist in almost every specialty, with some in Dallas, some in Ft.

Worth, and some in Houston.

Miss Madison brings me to this group. In August of 2008 she mentioned that

the joint below her big toe on one foot was hurting her. Generally

speaking, due to extensive neuropathy, even when injured there are few (if

any) complaints about pain in that area of her body, so I took note. Upon

looking at the joint it actually looked as though she might have dislocated

it and while there was swelling, there was no bruising and she had no

knowledge of having injured it. I took her to urgent care for an xray,

thinking it was something simple, and while they were able to tell me that

there was no dislocation or break which was good, they felt it looked like

she had tendonitis. With that we did the usual routine for the care of

tendonitis and I honestly didn¹t worry about it.

A week or so later our pediatrician asked to see her to examine the foot

herself. Upon exam she noted that there was still fluid on the joint, as

well as crepitus, and she felt there was something more going on. Upon the

advice of the orthopedic she was sending us to, we were sent for an xray &

sonogram of the joint. We saw the orthopedic and the primary concern was

that she might have Gout, but there was not enough fluid on the joint to get

a sample at that time, but we were sent for blood work to see what that

might show us. Blood work indicated something inflammatory going on and we

were immediately referred to a rheumatologist.

Thankfully we were able to see one quickly in Houston who has knowledge of

mitochondrial disease, something always important to the big picture. He¹s

young and a new ³real² doctor, and while those are not always my favorites,

in this case it was the perfect match. He had the time and was willing to

consult with all the other doctors he could find to try and figure my girl

out.

By December, Madison¹s left knee had become involved and there was little

doubt we were dealing with arthritis. The problem was/is, there are no

documented cases of arthritis in a mitochondrial disease kiddo. Lots and

lots of ³inflammatory² issues in the mom¹s and families, but not something

seen in the kids dealing with this disease. With that we needed to be very

sure there was not some other factor playing a part. An MRI was done of the

knee and the decision made to biopsy the synovium of the knee to be sure

there was no infection lingering in there causing the problem. She

tolerated the surgery well and other than inflammation, the synovial tissue

was clear of infection.

By September we had started on NSAID¹s, however, to further complicate

things, Madison was not tolerating them without regular GI bleeding, and

cannot take Tylenol for more than a week or two because the liver is very

susceptible to problems due to the mito. This put us in a pickle as we

tried to keep the pain of the arthritis under control. Once we had the

biopsy done showing no infection, we had the choice to either do long acting

steroid injections to the knee, or start her on weekly subcutaneous

injections of Methotrexate. While our choice was to try the injections to

the knee, unfortunately the long acting steroid we needed to use was not

available at the time, so we went ahead and started the Methotrexate.

Within three weeks Madison was giving herself the injection weekly....so

proud of her!!

Unfortunately, the MTX caused a great deal of nausea that we really

struggled to control. She was started on Folic Acid at the same time as the

mtx, and pretty quickly that dose was increased and we started playing with

pre- & post- dosing with Zofran to try and control the nausea. For a little

while pre-dosing with the Zofran, then taking it morning and night for the

following two days seemed to keep things in check (at least at a tolerable

level). When that regime started to fail we added in Leucovor and Phenergan

with some success. Ultimately, oddly enough, when she stopped eating meat

(upon realizing that the nausea always got worse after a meal with meat) we

finally got some relief from the constant nausea for a little while. It is

not completely controlled, but tons better as long as she eats little or no

meat.

Other than the nausea though, things seemed to be going pretty well. While

her knee and toe joint remained somewhat swollen all the time, she was not

having pain and was moving as well as she ever has (due to the muscle

component of her mito she has never been real active and usually uses a

wheel chair for distance walking).

However, in August her left knee re-flared and her right knee joined in on

the fun. :-(

MTX was increased and we were then given the choice of either trying again

for the steroid injections or Enbrel being added to the mix. After a lot of

thought and confirming we could get the type of steroid our rheumy wanted,

we decided to try the injections, although now it would be both knees at the

same time. The plan was to do the injections and keep her on the weekly mtx

and see how she does. If she can make it 6 months in between injections, we

can stay with this plan, however if she breaks through before the 6 month

mark our rheumy feels like we need to then consider the Enbrel. We did the

injections earlier this month and she tolerated them beautifully (one of

those times when neuropathy is a GOOD thing)....and now we wait to see what

happens.

While the arthritis is being called JIA, the doctors do feel like this is

part of her mitochondrial disease, for what that matters.

To complicate matters, she was already immune compromised before the

arthritis revealed itself. We had been incredibly fortunate that none of

the three had really dealt with regular illness before January of 2008. In

part this was because they have been home schooled for so long, we are

religious about hand washing and disinfecting, and we avoid sick people.

With mito any illness, even a minor one, can cause significant decline and

even death, so keeping them healthy as much as possible has been a primary

goal of care. And we had been really successful in this respect.

Unfortunately Madison contracted both Mononucleosis and a Mycoplasma

infection (walking pneumonia) at the same time in late 2007/early 2008.

This would be a bad combo for anyone, but for her it really, really took her

downhill. Not only did we start having constant infections, but the stress

on her system from the infections caused her to develop Dilated

Cardiomyopathy & early Heart Failure, respiratory weakness (uses Bipap &

oxygen at night), we had the first flare of her arthritis, and has caused

profound fatigue that is ever present. She was already a low energy kid in

general, since early 2008, her energy level is virtually nonexistent. I

have lost count of how many antibiotics she has been on in the last two

years, and we are now ending up inpatient on a regular basis with high

fevers, rigors, and blood pressures dropping to scary levels. And with

another nose dive in energy a few weeks ago (just when I think she cannot

get any more fatigued) we learned last week that she again has an acute

Mycoplasma infection (walking pneumonia). And because the hits just keep on

coming, she has now contracted the head cold her sister came down with 2

weeks ago and has been teetering on the edge of needing to be inpatient

again (our only saving grace is that she has a feeding tube and I am able to

keep her hydrated through the tube).

All this to say, adding Enbrel scares the heck out of me!!

At the same time though, the feeling is that part of her continued issues

with fatigue, even during a few months this last summer when we finally had

a reprieve from the constant infections, is due to a combination of the

heart issues and the arthritis still being active. All we have ever known

with Madison is as a fatigued child, however this level of fatigue she is

dealing with now is affecting her academically for the first time. After

about an hour of school work she is simply shutting down cognitively and if

pushed she, a. cannot do the work, and b. is physically, emotionally and

mentally so spent, nothing else can be planned for the day. We adjust to

³new normal¹s² all the time, and some new normals are pretty crappy, but

this is one that we are struggling with because it¹s impacting her quality

of life.

Well, I think I have likely shared more than anyone needed to know at this

point!!! Madison is a fighter, in every sense of the word, and I could not

be more proud of the young lady she is. She wakes with a smile and

generally keeps one on her face, even when she feels like crap. I am

finally getting a little window of opportunity to try and learn more about

this aspect of her care, and am looking forward to learning more from you

all. If nothing else, having somewhere to vent when she is having a bad day

would make a world of difference!!

Thanks for reading if you have made it this far!!!

BIG hugs,

, proud mom to Chance(17-Mito), Madison(14-Mito/JIA) &

Abigail(12-Mito)

[Guest guest]

Thank you for sharing your story. I'm sure that others join me in saying that

you and your family will be in my prayers.

There was another mom on this list a few years ago, whose child was initially

thought to have jra, and ultimately diagnosed with mito. His brother has it too.

Anyone remember Kim, Logan and Ethan? They are from Texas.

I don't know if you know other families dealing with this but it might be a

blessing to hook up with them. Let me know. I think you could both help each

other.

Bless Madison's heart. She is dealing with so much and now JIA. I hope that the

combo of the injections and the meds will help her gain the remission she so

deserves.

, adult onset RA, mom to Rob, 21, JAS

Hi/New here/long intro

" " < >

> Hi All,

>

> While I wish I didn¹t have a need to be here, I am relieved to

> find a list

> where I can learn more about my daughter¹s JIA. I am

> looking forward to

> getting to know everyone and thank you in advance for reading

> our story.

>

> My name is and I am the proud mom to three amazing

> kiddo¹s....Chanceis 17, Abigail is about to turn 13, and Madison

> is 14 (and the reason I am

> here). All three kids have a Mitochondrial Disease (Mito

> for short) that

> affects virtually every organ system. For those that don¹t

> know, a brief

> explanation of mito.....we have mitochondria in all of our cells

> except for

> our red blood cells. Within the mitochondria, the food we

> eat & oxygen that

> we breath is converted into a chemical the cells can use for

> energy. When

> there is a disease of the mitochondria, not enough energy is

> able to be

> produced and this can cause problems with function in every

> system of the

> body. While not always the course, in our case it has been

> progressive and

> degenerative and the kids have dealt with more and more medical

> issues as

> the years have gone by. The kids were given a ³Presumed²

> Mito dx in 2001 at

> the Cleveland Clinic where we received care for a couple of

> years, then were

> taken care of by a doctor at the Mayo Clinic in Minnesota for a

> couple of

> years, and have been receiving mito specific care in Houston now

> since the

> beginning of 2008 where we were finally able to confirm their

> mitochondrialdisease via genetics. I have been married to

> my DH for 22 years, and we

> have lived in the Dallas area the entire time. The kids

> currently have a

> specialist in almost every specialty, with some in Dallas, some

> in Ft.

> Worth, and some in Houston.

>

> Miss Madison brings me to this group. In August of 2008

> she mentioned that

> the joint below her big toe on one foot was hurting her.

> Generallyspeaking, due to extensive neuropathy, even when

> injured there are few (if

> any) complaints about pain in that area of her body, so I took

> note. Upon

> looking at the joint it actually looked as though she might have

> dislocatedit and while there was swelling, there was no bruising

> and she had no

> knowledge of having injured it. I took her to urgent care for an xray,

> thinking it was something simple, and while they were able to

> tell me that

> there was no dislocation or break which was good, they felt it

> looked like

> she had tendonitis. With that we did the usual routine for

> the care of

> tendonitis and I honestly didn¹t worry about it.

>

> A week or so later our pediatrician asked to see her to examine

> the foot

> herself. Upon exam she noted that there was still fluid on

> the joint, as

> well as crepitus, and she felt there was something more going

> on. Upon the

> advice of the orthopedic she was sending us to, we were sent for

> an xray &

> sonogram of the joint. We saw the orthopedic and the

> primary concern was

> that she might have Gout, but there was not enough fluid on the

> joint to get

> a sample at that time, but we were sent for blood work to see

> what that

> might show us. Blood work indicated something inflammatory

> going on and we

> were immediately referred to a rheumatologist.

>

> Thankfully we were able to see one quickly in Houston who has

> knowledge of

> mitochondrial disease, something always important to the big

> picture. He¹s

> young and a new ³real² doctor, and while those are not always my

> favorites,in this case it was the perfect match. He had

> the time and was willing to

> consult with all the other doctors he could find to try and

> figure my girl

> out.

>

> By December, Madison¹s left knee had become involved and there

> was little

> doubt we were dealing with arthritis. The problem was/is,

> there are no

> documented cases of arthritis in a mitochondrial disease

> kiddo. Lots and

> lots of ³inflammatory² issues in the mom¹s and families, but not

> somethingseen in the kids dealing with this disease. With

> that we needed to be very

> sure there was not some other factor playing a part. An

> MRI was done of the

> knee and the decision made to biopsy the synovium of the knee to

> be sure

> there was no infection lingering in there causing the

> problem. She

> tolerated the surgery well and other than inflammation, the

> synovial tissue

> was clear of infection.

>

> By September we had started on NSAID¹s, however, to further complicate

> things, Madison was not tolerating them without regular GI

> bleeding, and

> cannot take Tylenol for more than a week or two because the

> liver is very

> susceptible to problems due to the mito. This put us in a

> pickle as we

> tried to keep the pain of the arthritis under control.

> Once we had the

> biopsy done showing no infection, we had the choice to either do

> long acting

> steroid injections to the knee, or start her on weekly subcutaneous

> injections of Methotrexate. While our choice was to try

> the injections to

> the knee, unfortunately the long acting steroid we needed to use

> was not

> available at the time, so we went ahead and started the Methotrexate.

>

> Within three weeks Madison was giving herself the injection

> weekly....soproud of her!!

>

> Unfortunately, the MTX caused a great deal of nausea that we really

> struggled to control. She was started on Folic Acid at the

> same time as the

> mtx, and pretty quickly that dose was increased and we started

> playing with

> pre- & post- dosing with Zofran to try and control the

> nausea. For a little

> while pre-dosing with the Zofran, then taking it morning and

> night for the

> following two days seemed to keep things in check (at least at a

> tolerablelevel). When that regime started to fail we added

> in Leucovor and Phenergan

> with some success. Ultimately, oddly enough, when she

> stopped eating meat

> (upon realizing that the nausea always got worse after a meal

> with meat) we

> finally got some relief from the constant nausea for a little

> while. It is

> not completely controlled, but tons better as long as she eats

> little or no

> meat.

>

> Other than the nausea though, things seemed to be going pretty

> well. While

> her knee and toe joint remained somewhat swollen all the time,

> she was not

> having pain and was moving as well as she ever has (due to the muscle

> component of her mito she has never been real active and usually

> uses a

> wheel chair for distance walking).

>

> However, in August her left knee re-flared and her right knee

> joined in on

> the fun. :-(

>

> MTX was increased and we were then given the choice of either

> trying again

> for the steroid injections or Enbrel being added to the

> mix. After a lot of

> thought and confirming we could get the type of steroid our

> rheumy wanted,

> we decided to try the injections, although now it would be both

> knees at the

> same time. The plan was to do the injections and keep her

> on the weekly mtx

> and see how she does. If she can make it 6 months in

> between injections, we

> can stay with this plan, however if she breaks through before

> the 6 month

> mark our rheumy feels like we need to then consider the

> Enbrel. We did the

> injections earlier this month and she tolerated them beautifully

> (one of

> those times when neuropathy is a GOOD thing)....and now we wait

> to see what

> happens.

>

> While the arthritis is being called JIA, the doctors do feel

> like this is

> part of her mitochondrial disease, for what that matters.

>

> To complicate matters, she was already immune compromised before the

> arthritis revealed itself. We had been incredibly

> fortunate that none of

> the three had really dealt with regular illness before January

> of 2008. In

> part this was because they have been home schooled for so long,

> we are

> religious about hand washing and disinfecting, and we avoid sick

> people.With mito any illness, even a minor one, can cause

> significant decline and

> even death, so keeping them healthy as much as possible has been

> a primary

> goal of care. And we had been really successful in this respect.

> Unfortunately Madison contracted both Mononucleosis and a Mycoplasma

> infection (walking pneumonia) at the same time in late

> 2007/early 2008.

> This would be a bad combo for anyone, but for her it really,

> really took her

> downhill. Not only did we start having constant

> infections, but the stress

> on her system from the infections caused her to develop Dilated

> Cardiomyopathy & early Heart Failure, respiratory weakness (uses

> Bipap &

> oxygen at night), we had the first flare of her arthritis, and

> has caused

> profound fatigue that is ever present. She was already a

> low energy kid in

> general, since early 2008, her energy level is virtually

> nonexistent. I

> have lost count of how many antibiotics she has been on in the

> last two

> years, and we are now ending up inpatient on a regular basis

> with high

> fevers, rigors, and blood pressures dropping to scary

> levels. And with

> another nose dive in energy a few weeks ago (just when I think

> she cannot

> get any more fatigued) we learned last week that she again has

> an acute

> Mycoplasma infection (walking pneumonia). And because the

> hits just keep on

> coming, she has now contracted the head cold her sister came

> down with 2

> weeks ago and has been teetering on the edge of needing to be

> inpatientagain (our only saving grace is that she has a feeding

> tube and I am able to

> keep her hydrated through the tube).

>

> All this to say, adding Enbrel scares the heck out of me!!

>

> At the same time though, the feeling is that part of her

> continued issues

> with fatigue, even during a few months this last summer when we

> finally had

> a reprieve from the constant infections, is due to a combination

> of the

> heart issues and the arthritis still being active. All we

> have ever known

> with Madison is as a fatigued child, however this level of

> fatigue she is

> dealing with now is affecting her academically for the first

> time. After

> about an hour of school work she is simply shutting down

> cognitively and if

> pushed she, a. cannot do the work, and b. is physically,

> emotionally and

> mentally so spent, nothing else can be planned for the

> day. We adjust to

> ³new normal¹s² all the time, and some new normals are pretty

> crappy, but

> this is one that we are struggling with because it¹s impacting

> her quality

> of life.

>

> Well, I think I have likely shared more than anyone needed to

> know at this

> point!!! Madison is a fighter, in every sense of the word,

> and I could not

> be more proud of the young lady she is. She wakes with a

> smile and

> generally keeps one on her face, even when she feels like

> crap. I am

> finally getting a little window of opportunity to try and learn

> more about

> this aspect of her care, and am looking forward to learning more

> from you

> all. If nothing else, having somewhere to vent when she is

> having a bad day

> would make a world of difference!!

>

> Thanks for reading if you have made it this far!!!

>

> BIG hugs,

> , proud mom to Chance(17-Mito), Madison(14-Mito/JIA) &

> Abigail(12-Mito)

>

>

>

[Guest guest]

Hi ,

Welcome to our group! It is a great place to be for support and information. If

there are any issues with the JIA chances are someone here has encountered them

at some point in time. I would be lost without our group and am so glad you

found us.

I just realized that when I am trying to comprehend quite a bit of medical

information I hold my breath (maybe that is why I find appointments so

overwhelming). While reading your email with everything you are involved with

there I felt weak. I wish I could just hug you right now.

I know these drugs are scary and even more so when there are other medical

issues that make the drugs even more toxic. I know how scared we all are with

the drugs so it must be multiplied there.

We will keep you in our prayers.

, Amber (16) Psoriatic

>

> Hi All,

>

> While I wish I didn¹t have a need to be here, I am relieved to find a list

> where I can learn more about my daughter¹s JIA. I am looking forward to

> getting to know everyone and thank you in advance for reading our story.

>

> My name is and I am the proud mom to three amazing kiddo¹s....Chance

> is 17, Abigail is about to turn 13, and Madison is 14 (and the reason I am

> here). All three kids have a Mitochondrial Disease (Mito for short) that

> affects virtually every organ system. For those that don¹t know, a brief

> explanation of mito.....we have mitochondria in all of our cells except for

> our red blood cells. Within the mitochondria, the food we eat & oxygen that

> we breath is converted into a chemical the cells can use for energy. When

> there is a disease of the mitochondria, not enough energy is able to be

> produced and this can cause problems with function in every system of the

> body. While not always the course, in our case it has been progressive and

> degenerative and the kids have dealt with more and more medical issues as

> the years have gone by. The kids were given a ³Presumed² Mito dx in 2001 at

> the Cleveland Clinic where we received care for a couple of years, then were

> taken care of by a doctor at the Mayo Clinic in Minnesota for a couple of

> years, and have been receiving mito specific care in Houston now since the

> beginning of 2008 where we were finally able to confirm their mitochondrial

> disease via genetics. I have been married to my DH for 22 years, and we

> have lived in the Dallas area the entire time. The kids currently have a

> specialist in almost every specialty, with some in Dallas, some in Ft.

> Worth, and some in Houston.

>

> Miss Madison brings me to this group. In August of 2008 she mentioned that

> the joint below her big toe on one foot was hurting her. Generally

> speaking, due to extensive neuropathy, even when injured there are few (if

> any) complaints about pain in that area of her body, so I took note. Upon

> looking at the joint it actually looked as though she might have dislocated

> it and while there was swelling, there was no bruising and she had no

> knowledge of having injured it. I took her to urgent care for an xray,

> thinking it was something simple, and while they were able to tell me that

> there was no dislocation or break which was good, they felt it looked like

> she had tendonitis. With that we did the usual routine for the care of

> tendonitis and I honestly didn¹t worry about it.

>

> A week or so later our pediatrician asked to see her to examine the foot

> herself. Upon exam she noted that there was still fluid on the joint, as

> well as crepitus, and she felt there was something more going on. Upon the

> advice of the orthopedic she was sending us to, we were sent for an xray &

> sonogram of the joint. We saw the orthopedic and the primary concern was

> that she might have Gout, but there was not enough fluid on the joint to get

> a sample at that time, but we were sent for blood work to see what that

> might show us. Blood work indicated something inflammatory going on and we

> were immediately referred to a rheumatologist.

>

> Thankfully we were able to see one quickly in Houston who has knowledge of

> mitochondrial disease, something always important to the big picture. He¹s

> young and a new ³real² doctor, and while those are not always my favorites,

> in this case it was the perfect match. He had the time and was willing to

> consult with all the other doctors he could find to try and figure my girl

> out.

>

> By December, Madison¹s left knee had become involved and there was little

> doubt we were dealing with arthritis. The problem was/is, there are no

> documented cases of arthritis in a mitochondrial disease kiddo. Lots and

> lots of ³inflammatory² issues in the mom¹s and families, but not something

> seen in the kids dealing with this disease. With that we needed to be very

> sure there was not some other factor playing a part. An MRI was done of the

> knee and the decision made to biopsy the synovium of the knee to be sure

> there was no infection lingering in there causing the problem. She

> tolerated the surgery well and other than inflammation, the synovial tissue

> was clear of infection.

>

> By September we had started on NSAID¹s, however, to further complicate

> things, Madison was not tolerating them without regular GI bleeding, and

> cannot take Tylenol for more than a week or two because the liver is very

> susceptible to problems due to the mito. This put us in a pickle as we

> tried to keep the pain of the arthritis under control. Once we had the

> biopsy done showing no infection, we had the choice to either do long acting

> steroid injections to the knee, or start her on weekly subcutaneous

> injections of Methotrexate. While our choice was to try the injections to

> the knee, unfortunately the long acting steroid we needed to use was not

> available at the time, so we went ahead and started the Methotrexate.

>

> Within three weeks Madison was giving herself the injection weekly....so

> proud of her!!

>

> Unfortunately, the MTX caused a great deal of nausea that we really

> struggled to control. She was started on Folic Acid at the same time as the

> mtx, and pretty quickly that dose was increased and we started playing with

> pre- & post- dosing with Zofran to try and control the nausea. For a little

> while pre-dosing with the Zofran, then taking it morning and night for the

> following two days seemed to keep things in check (at least at a tolerable

> level). When that regime started to fail we added in Leucovor and Phenergan

> with some success. Ultimately, oddly enough, when she stopped eating meat

> (upon realizing that the nausea always got worse after a meal with meat) we

> finally got some relief from the constant nausea for a little while. It is

> not completely controlled, but tons better as long as she eats little or no

> meat.

>

> Other than the nausea though, things seemed to be going pretty well. While

> her knee and toe joint remained somewhat swollen all the time, she was not

> having pain and was moving as well as she ever has (due to the muscle

> component of her mito she has never been real active and usually uses a

> wheel chair for distance walking).

>

> However, in August her left knee re-flared and her right knee joined in on

> the fun. :-(

>

> MTX was increased and we were then given the choice of either trying again

> for the steroid injections or Enbrel being added to the mix. After a lot of

> thought and confirming we could get the type of steroid our rheumy wanted,

> we decided to try the injections, although now it would be both knees at the

> same time. The plan was to do the injections and keep her on the weekly mtx

> and see how she does. If she can make it 6 months in between injections, we

> can stay with this plan, however if she breaks through before the 6 month

> mark our rheumy feels like we need to then consider the Enbrel. We did the

> injections earlier this month and she tolerated them beautifully (one of

> those times when neuropathy is a GOOD thing)....and now we wait to see what

> happens.

>

> While the arthritis is being called JIA, the doctors do feel like this is

> part of her mitochondrial disease, for what that matters.

>

> To complicate matters, she was already immune compromised before the

> arthritis revealed itself. We had been incredibly fortunate that none of

> the three had really dealt with regular illness before January of 2008. In

> part this was because they have been home schooled for so long, we are

> religious about hand washing and disinfecting, and we avoid sick people.

> With mito any illness, even a minor one, can cause significant decline and

> even death, so keeping them healthy as much as possible has been a primary

> goal of care. And we had been really successful in this respect.

> Unfortunately Madison contracted both Mononucleosis and a Mycoplasma

> infection (walking pneumonia) at the same time in late 2007/early 2008.

> This would be a bad combo for anyone, but for her it really, really took her

> downhill. Not only did we start having constant infections, but the stress

> on her system from the infections caused her to develop Dilated

> Cardiomyopathy & early Heart Failure, respiratory weakness (uses Bipap &

> oxygen at night), we had the first flare of her arthritis, and has caused

> profound fatigue that is ever present. She was already a low energy kid in

> general, since early 2008, her energy level is virtually nonexistent. I

> have lost count of how many antibiotics she has been on in the last two

> years, and we are now ending up inpatient on a regular basis with high

> fevers, rigors, and blood pressures dropping to scary levels. And with

> another nose dive in energy a few weeks ago (just when I think she cannot

> get any more fatigued) we learned last week that she again has an acute

> Mycoplasma infection (walking pneumonia). And because the hits just keep on

> coming, she has now contracted the head cold her sister came down with 2

> weeks ago and has been teetering on the edge of needing to be inpatient

> again (our only saving grace is that she has a feeding tube and I am able to

> keep her hydrated through the tube).

>

> All this to say, adding Enbrel scares the heck out of me!!

>

> At the same time though, the feeling is that part of her continued issues

> with fatigue, even during a few months this last summer when we finally had

> a reprieve from the constant infections, is due to a combination of the

> heart issues and the arthritis still being active. All we have ever known

> with Madison is as a fatigued child, however this level of fatigue she is

> dealing with now is affecting her academically for the first time. After

> about an hour of school work she is simply shutting down cognitively and if

> pushed she, a. cannot do the work, and b. is physically, emotionally and

> mentally so spent, nothing else can be planned for the day. We adjust to

> ³new normal¹s² all the time, and some new normals are pretty crappy, but

> this is one that we are struggling with because it¹s impacting her quality

> of life.

>

> Well, I think I have likely shared more than anyone needed to know at this

> point!!! Madison is a fighter, in every sense of the word, and I could not

> be more proud of the young lady she is. She wakes with a smile and

> generally keeps one on her face, even when she feels like crap. I am

> finally getting a little window of opportunity to try and learn more about

> this aspect of her care, and am looking forward to learning more from you

> all. If nothing else, having somewhere to vent when she is having a bad day

> would make a world of difference!!

>

> Thanks for reading if you have made it this far!!!

>

> BIG hugs,

> , proud mom to Chance(17-Mito), Madison(14-Mito/JIA) &

> Abigail(12-Mito)

>

>

>

[Guest guest]

Hi ,

I am so sorry to hear of Madison's situation. My daughter Rose has quite a few

health problems too, but not anything to compare with Madison's. I can relate to

the fatigue, as my daughter has liver issues, but it does not sound half as

severe as Madison's. Hope you find the support you need here.

Jo

> >

> > Hi All,

> >

> > While I wish I didn¹t have a need to be here, I am relieved to find a list

> > where I can learn more about my daughter¹s JIA. I am looking forward to

> > getting to know everyone and thank you in advance for reading our story.

> >

> > My name is and I am the proud mom to three amazing kiddo¹s....Chance

> > is 17, Abigail is about to turn 13, and Madison is 14 (and the reason I am

> > here). All three kids have a Mitochondrial Disease (Mito for short) that

> > affects virtually every organ system. For those that don¹t know, a brief

> > explanation of mito.....we have mitochondria in all of our cells except for

> > our red blood cells. Within the mitochondria, the food we eat & oxygen that

> > we breath is converted into a chemical the cells can use for energy. When

> > there is a disease of the mitochondria, not enough energy is able to be

> > produced and this can cause problems with function in every system of the

> > body. While not always the course, in our case it has been progressive and

> > degenerative and the kids have dealt with more and more medical issues as

> > the years have gone by. The kids were given a ³Presumed² Mito dx in 2001 at

> > the Cleveland Clinic where we received care for a couple of years, then were

> > taken care of by a doctor at the Mayo Clinic in Minnesota for a couple of

> > years, and have been receiving mito specific care in Houston now since the

> > beginning of 2008 where we were finally able to confirm their mitochondrial

> > disease via genetics. I have been married to my DH for 22 years, and we

> > have lived in the Dallas area the entire time. The kids currently have a

> > specialist in almost every specialty, with some in Dallas, some in Ft.

> > Worth, and some in Houston.

> >

> > Miss Madison brings me to this group. In August of 2008 she mentioned that

> > the joint below her big toe on one foot was hurting her. Generally

> > speaking, due to extensive neuropathy, even when injured there are few (if

> > any) complaints about pain in that area of her body, so I took note. Upon

> > looking at the joint it actually looked as though she might have dislocated

> > it and while there was swelling, there was no bruising and she had no

> > knowledge of having injured it. I took her to urgent care for an xray,

> > thinking it was something simple, and while they were able to tell me that

> > there was no dislocation or break which was good, they felt it looked like

> > she had tendonitis. With that we did the usual routine for the care of

> > tendonitis and I honestly didn¹t worry about it.

> >

> > A week or so later our pediatrician asked to see her to examine the foot

> > herself. Upon exam she noted that there was still fluid on the joint, as

> > well as crepitus, and she felt there was something more going on. Upon the

> > advice of the orthopedic she was sending us to, we were sent for an xray &

> > sonogram of the joint. We saw the orthopedic and the primary concern was

> > that she might have Gout, but there was not enough fluid on the joint to get

> > a sample at that time, but we were sent for blood work to see what that

> > might show us. Blood work indicated something inflammatory going on and we

> > were immediately referred to a rheumatologist.

> >

> > Thankfully we were able to see one quickly in Houston who has knowledge of

> > mitochondrial disease, something always important to the big picture. He¹s

> > young and a new ³real² doctor, and while those are not always my favorites,

> > in this case it was the perfect match. He had the time and was willing to

> > consult with all the other doctors he could find to try and figure my girl

> > out.

> >

> > By December, Madison¹s left knee had become involved and there was little

> > doubt we were dealing with arthritis. The problem was/is, there are no

> > documented cases of arthritis in a mitochondrial disease kiddo. Lots and

> > lots of ³inflammatory² issues in the mom¹s and families, but not something

> > seen in the kids dealing with this disease. With that we needed to be very

> > sure there was not some other factor playing a part. An MRI was done of the

> > knee and the decision made to biopsy the synovium of the knee to be sure

> > there was no infection lingering in there causing the problem. She

> > tolerated the surgery well and other than inflammation, the synovial tissue

> > was clear of infection.

> >

> > By September we had started on NSAID¹s, however, to further complicate

> > things, Madison was not tolerating them without regular GI bleeding, and

> > cannot take Tylenol for more than a week or two because the liver is very

> > susceptible to problems due to the mito. This put us in a pickle as we

> > tried to keep the pain of the arthritis under control. Once we had the

> > biopsy done showing no infection, we had the choice to either do long acting

> > steroid injections to the knee, or start her on weekly subcutaneous

> > injections of Methotrexate. While our choice was to try the injections to

> > the knee, unfortunately the long acting steroid we needed to use was not

> > available at the time, so we went ahead and started the Methotrexate.

> >

> > Within three weeks Madison was giving herself the injection weekly....so

> > proud of her!!

> >

> > Unfortunately, the MTX caused a great deal of nausea that we really

> > struggled to control. She was started on Folic Acid at the same time as the

> > mtx, and pretty quickly that dose was increased and we started playing with

> > pre- & post- dosing with Zofran to try and control the nausea. For a little

> > while pre-dosing with the Zofran, then taking it morning and night for the

> > following two days seemed to keep things in check (at least at a tolerable

> > level). When that regime started to fail we added in Leucovor and Phenergan

> > with some success. Ultimately, oddly enough, when she stopped eating meat

> > (upon realizing that the nausea always got worse after a meal with meat) we

> > finally got some relief from the constant nausea for a little while. It is

> > not completely controlled, but tons better as long as she eats little or no

> > meat.

> >

> > Other than the nausea though, things seemed to be going pretty well. While

> > her knee and toe joint remained somewhat swollen all the time, she was not

> > having pain and was moving as well as she ever has (due to the muscle

> > component of her mito she has never been real active and usually uses a

> > wheel chair for distance walking).

> >

> > However, in August her left knee re-flared and her right knee joined in on

> > the fun. :-(

> >

> > MTX was increased and we were then given the choice of either trying again

> > for the steroid injections or Enbrel being added to the mix. After a lot of

> > thought and confirming we could get the type of steroid our rheumy wanted,

> > we decided to try the injections, although now it would be both knees at the

> > same time. The plan was to do the injections and keep her on the weekly mtx

> > and see how she does. If she can make it 6 months in between injections, we

> > can stay with this plan, however if she breaks through before the 6 month

> > mark our rheumy feels like we need to then consider the Enbrel. We did the

> > injections earlier this month and she tolerated them beautifully (one of

> > those times when neuropathy is a GOOD thing)....and now we wait to see what

> > happens.

> >

> > While the arthritis is being called JIA, the doctors do feel like this is

> > part of her mitochondrial disease, for what that matters.

> >

> > To complicate matters, she was already immune compromised before the

> > arthritis revealed itself. We had been incredibly fortunate that none of

> > the three had really dealt with regular illness before January of 2008. In

> > part this was because they have been home schooled for so long, we are

> > religious about hand washing and disinfecting, and we avoid sick people.

> > With mito any illness, even a minor one, can cause significant decline and

> > even death, so keeping them healthy as much as possible has been a primary

> > goal of care. And we had been really successful in this respect.

> > Unfortunately Madison contracted both Mononucleosis and a Mycoplasma

> > infection (walking pneumonia) at the same time in late 2007/early 2008.

> > This would be a bad combo for anyone, but for her it really, really took her

> > downhill. Not only did we start having constant infections, but the stress

> > on her system from the infections caused her to develop Dilated

> > Cardiomyopathy & early Heart Failure, respiratory weakness (uses Bipap &

> > oxygen at night), we had the first flare of her arthritis, and has caused

> > profound fatigue that is ever present. She was already a low energy kid in

> > general, since early 2008, her energy level is virtually nonexistent. I

> > have lost count of how many antibiotics she has been on in the last two

> > years, and we are now ending up inpatient on a regular basis with high

> > fevers, rigors, and blood pressures dropping to scary levels. And with

> > another nose dive in energy a few weeks ago (just when I think she cannot

> > get any more fatigued) we learned last week that she again has an acute

> > Mycoplasma infection (walking pneumonia). And because the hits just keep on

> > coming, she has now contracted the head cold her sister came down with 2

> > weeks ago and has been teetering on the edge of needing to be inpatient

> > again (our only saving grace is that she has a feeding tube and I am able to

> > keep her hydrated through the tube).

> >

> > All this to say, adding Enbrel scares the heck out of me!!

> >

> > At the same time though, the feeling is that part of her continued issues

> > with fatigue, even during a few months this last summer when we finally had

> > a reprieve from the constant infections, is due to a combination of the

> > heart issues and the arthritis still being active. All we have ever known

> > with Madison is as a fatigued child, however this level of fatigue she is

> > dealing with now is affecting her academically for the first time. After

> > about an hour of school work she is simply shutting down cognitively and if

> > pushed she, a. cannot do the work, and b. is physically, emotionally and

> > mentally so spent, nothing else can be planned for the day. We adjust to

> > ³new normal¹s² all the time, and some new normals are pretty crappy, but

> > this is one that we are struggling with because it¹s impacting her quality

> > of life.

> >

> > Well, I think I have likely shared more than anyone needed to know at this

> > point!!! Madison is a fighter, in every sense of the word, and I could not

> > be more proud of the young lady she is. She wakes with a smile and

> > generally keeps one on her face, even when she feels like crap. I am

> > finally getting a little window of opportunity to try and learn more about

> > this aspect of her care, and am looking forward to learning more from you

> > all. If nothing else, having somewhere to vent when she is having a bad day

> > would make a world of difference!!

> >

> > Thanks for reading if you have made it this far!!!

> >

> > BIG hugs,

> > , proud mom to Chance(17-Mito), Madison(14-Mito/JIA) &

> > Abigail(12-Mito)

> >

> >

> >