Re: cant begin to explain my fustrations

March 12, 2005

Barb

someone once said to me we do not get more than we can deal with.....they certainly did not know about mito and I just wanted to scream at them....the one question I have for oyu is why another biopsy is being considered ?......are you hoping to find information that will provide a cure???...or is it to be able to attach a new label???...would it make less stressful if you did not have to do another biopsy????...think about these things...there are many ways to relief stress...

loosing faith at times and wanting to bury your head in the sand is normal....we all want to do that, including wanting to run away and wanting to come home to a home where the world is a happy, perfectly intact place....well, the truth is, our normal is a different kind of normal and that normal comes with a sliding scale...lots of room to adjust to always new kinds of normal....you have to hang in there...your family needs you...I would love to kiss our boo boos away too.......

big hug

rosy

March 12, 2005

I am so sorry to hear you are hurting so badly. My son is in the hospital

right now, we are in a similar situation, where things had been going so

well for him for so long, then - bang! The little boy in the room with him

has cancer that was found this past January and had never been sick a day in

his life. His mom is also in tears constantly trying to understand why and

what. I wish we could all find answers to the 'big question' of why this is

happening (that is probably an entire yahoo group by itself over in the

philosophy and religion section), but in the meantime we just need to find

enough strength to make it to sundown. Then tomorrow we will find enough

strength to get out of bed. One day at a time.

I hope being able to 'unload' to a group of people like this helps, even if

only for the fact to know that you are not alone in your struggles. Lots of

happy thoughts and prayers will be going your way today; I hope you can feel

their presence in your life.

Rod

cant begin to explain my fustrations

I feel like we've been hit with a ton of bricks, the same feeling i

had when Matt was 1st diagnosed 7 years ago. We got through that

initial shock, and life got back to somewhat normal routine, and we

incorporated Matts disability into our daily lives, like clock work,

everything was going so smoothly. Over the past few years Matts

white and gray matter lesions didnt grow or spread and no new ones

were found, seizures were under control, his g-tube was a blessing,

special ed going great, he was growing, thriving, learning, he was

even getting stronger, so well that his pediatrician at one point

said " looks like hes outgrowing these problems " . His point being

that the mito somehow was in remission, and Matt was outgrowing it.

Even the pdd-autism, he started socializing, and less fustrated, he

even learned how to read which no one thought possible. Sure there

were still things like, incontinence at night, cant tie his shoes,

little things that just didnt matter anyway, nobodies perfect. And

being told that Matt had the slowest progressing mito, really gave

us hope. WE had the biggest and best 8th birthday celebration a kid

could have. THen those little things turned into more little things,

couldnt ride his bike anymore, muscle spasms that had him screaming

in pain, reflux back with a vengence, all things that we could deal

with and handle. And as the months go by, more things, severe

fatigue, and not wanting to go outside to play anymore, coming home

from school and sleeping for two hours and then no energy to do

homework, diagnosed with cough varient ashma, and then migrains

started, and still all things that we could deal with. WE meet with

a new metabolic/neuro specialist, his field is mito! Not that Matts

origional neuro wasnt great, he was and still is. But Dr Marks is

just so more knowledgable. So he reads all Matts records, and

concludes yes theres a regression going on, he orders new blood

work, that shows there are definite problems, we get a new MRI and

MRA and wham, two new white matter lesions not in the left lobe

where the others are, but now in the frontal lobe. Where the hell

are these lesions coming from?!! After all these years and mri's

every year why all of a sudden all this is happening? Matt now

getting rushed to the hospital from school from a severe crash in

gym class. An 8 year old child also with tacticardia, and two weeks

before got a clean bill of health from our cardiologist, Dr Marks

convinced that primary diagnoses MERFF is wrong, and looking into

MELAS/ complex one. We've added extra feedings via g-tube to help

with nutrician and weight gain, and still he is fatigued, and not

gaining wieght. Still getting migrains with new medications, im

almost afraid to say it, but at least we have been able to lower

Matts seizure meds without incident. We just got word that all

monies are in place for Matt to get his mtdna blood work done will

go to St hosp, next week for that, 50/50 chance of mt being

found in blood, if not found Matt will have to have another muscle

biopsy, although his 1st biopsy showed red ragged fibers, the mt was

never found. And of course my biopsy didnt show mtdna, so my son

has to go through all this and God i pray this will show the

specialist what they need to know to help Matt, and me. Im so

tired, im fustrated, dealing with insurance company that no longer

wants to pay for carnitor, im now buying over the counter just to

keep my head above water, because without the cocktail im useless,

literally! I just want to scream, but that wont help, i cry and get

on with things but thats not helping either. I read the post of

other families and we are all in the same boat, paddling together to

keep from sinking, pulling together to keep our sanity, I think this

is an awesome group that knows more than most doctors, families that

are strong in the face of adversity, but when we mothers are alone,

our fears are there, our hearts are breaking, i dont know if i can

take anymore!!! I dont know if i can take anymore!! It hurts so

bad, that i cant kiss this boo-boo away, my heart is breaking. I

dont know what to do, i keep praying but starting to lose faith at

times, i dont know what to do! Thanks for listening any prayers

would be appreciated, and our family is praying for all here, I know

you understand my fears as you all have them too, our plates are

full and the cups are overflowing, God please help us all. Barb

Please contact mito-owner with any problems or questions.

March 12, 2005

Sorry to hear of your recent problems. I hope it all starts to turn around soon.

One note I saw in your post really stuck out. You said you were buying the OTC Carnitine. I just read something about it that really stood out. It said if you really need the Carnitor, DO NOT use the D,L Carnitine sold over the counter because it can actually cause Carnitine Defficiency.

I have not done much research on this, but it was in the patient leaflett from Gracies last refill. You may be able to pull up the info from the pharmacy. We use Wal Mart's pharmacy if you want to look further into it. You may want to check out Carnitor's website. The manufacturer does have some drug assistance programs available.

Best wishes

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March 12, 2005

Sending a big ((((((HUG))))) to you. I'm sorry that everything seems

to be falling apart at the same time. When I am in that situation I

offer it all up to God knowing that he will be there to support me.

Once I've done that I feel like a huge weight is lifted off of my

shoulders. Know that with each passing moment you become stronger.

Geri-Anne and Wyatt, Complex I

caringbridge.org/mn/wyattc

>

> I feel like we've been hit with a ton of bricks, the same feeling i

> had when Matt was 1st diagnosed 7 years ago. We got through that

> initial shock, and life got back to somewhat normal routine, and we

> incorporated Matts disability into our daily lives, like clock work,

> everything was going so smoothly. Over the past few years Matts

> white and gray matter lesions didnt grow or spread and no new ones

> were found, seizures were under control, his g-tube was a blessing,

> special ed going great, he was growing, thriving, learning, he was

> even getting stronger, so well that his pediatrician at one point

> said " looks like hes outgrowing these problems " . His point being

> that the mito somehow was in remission, and Matt was outgrowing it.

> Even the pdd-autism, he started socializing, and less fustrated, he

> even learned how to read which no one thought possible. Sure there

> were still things like, incontinence at night, cant tie his shoes,

> little things that just didnt matter anyway, nobodies perfect. And

> being told that Matt had the slowest progressing mito, really gave

> us hope. WE had the biggest and best 8th birthday celebration a kid

> could have. THen those little things turned into more little things,

> couldnt ride his bike anymore, muscle spasms that had him screaming

> in pain, reflux back with a vengence, all things that we could deal

> with and handle. And as the months go by, more things, severe

> fatigue, and not wanting to go outside to play anymore, coming home

> from school and sleeping for two hours and then no energy to do

> homework, diagnosed with cough varient ashma, and then migrains

> started, and still all things that we could deal with. WE meet with

> a new metabolic/neuro specialist, his field is mito! Not that Matts

> origional neuro wasnt great, he was and still is. But Dr Marks is

> just so more knowledgable. So he reads all Matts records, and

> concludes yes theres a regression going on, he orders new blood

> work, that shows there are definite problems, we get a new MRI and

> MRA and wham, two new white matter lesions not in the left lobe

> where the others are, but now in the frontal lobe. Where the hell

> are these lesions coming from?!! After all these years and mri's

> every year why all of a sudden all this is happening? Matt now

> getting rushed to the hospital from school from a severe crash in

> gym class. An 8 year old child also with tacticardia, and two weeks

> before got a clean bill of health from our cardiologist, Dr Marks

> convinced that primary diagnoses MERFF is wrong, and looking into

> MELAS/ complex one. We've added extra feedings via g-tube to help

> with nutrician and weight gain, and still he is fatigued, and not

> gaining wieght. Still getting migrains with new medications, im

> almost afraid to say it, but at least we have been able to lower

> Matts seizure meds without incident. We just got word that all

> monies are in place for Matt to get his mtdna blood work done will

> go to St hosp, next week for that, 50/50 chance of mt being

> found in blood, if not found Matt will have to have another muscle

> biopsy, although his 1st biopsy showed red ragged fibers, the mt was

> never found. And of course my biopsy didnt show mtdna, so my son

> has to go through all this and God i pray this will show the

> specialist what they need to know to help Matt, and me. Im so

> tired, im fustrated, dealing with insurance company that no longer

> wants to pay for carnitor, im now buying over the counter just to

> keep my head above water, because without the cocktail im useless,

> literally! I just want to scream, but that wont help, i cry and get

> on with things but thats not helping either. I read the post of

> other families and we are all in the same boat, paddling together to

> keep from sinking, pulling together to keep our sanity, I think this

> is an awesome group that knows more than most doctors, families that

> are strong in the face of adversity, but when we mothers are alone,

> our fears are there, our hearts are breaking, i dont know if i can

> take anymore!!! I dont know if i can take anymore!! It hurts so

> bad, that i cant kiss this boo-boo away, my heart is breaking. I

> dont know what to do, i keep praying but starting to lose faith at

> times, i dont know what to do! Thanks for listening any prayers

> would be appreciated, and our family is praying for all here, I know

> you understand my fears as you all have them too, our plates are

> full and the cups are overflowing, God please help us all. Barb

March 12, 2005

Good catch,

.

The only

recommended carnitine is the Carnitor brand name made by Sigma-Tau, which is

only available by prescription. Without starting an email war and keeping

things brief: its formulation and manufacture are regulated by the FDA to be

consistent (supplements can be far less than 100% L-carnitine and provide

variance from batch to batch*). The other issue that can be very important

is the dissolution of the pill/capsule in the body. Some supplements

(especially those made outside the US) are made with inert ingredients

that interfere with the dissolving in the stomach, so not all the medicine can

be absorbed.

I hope everything

gets better for you. Next time you see the doctor, ask if they have a

social worker available who can help navigate the maze for additional helps.

Also, ask your health insurance company to provide a nurse case manager.

That can be an important advocate from the inside for you.

(((hugs)))

Rod

*There was

recently a study published in a trade magazine I get (LC/GC, for laboratory

people) where they looked at various supplements. The tablets ranged from

delivering 50% to 200% of what they claimed on the label.

From:

Sent: Saturday, March 12, 2005

10:01 AM

To: Mito

Subject: RE: cant begin to explain my fustrations

Sorry to

hear of your recent problems. I hope it all starts to turn around soon.

One note

I saw in your post really stuck out. You said you were buying the OTC

Carnitine. I just read something about it that really stood out. It

said if you really need the Carnitor, DO NOT use the D,L Carnitine sold over

the counter because it can actually cause Carnitine Defficiency.

I have

not done much research on this, but it was in the patient leaflett from Gracies

last refill. You may be able to pull up the info from the pharmacy.

We use Wal Mart's pharmacy if you want to look further into it. You may

want to check out Carnitor's website. The manufacturer does have some

drug assistance programs available.

Best

wishes

With

MSN Spaces email straight to your blog. Upload jokes, photos and more. It's

free!

Please

contact mito-owner with any problems or questions.

March 12, 2005

Barb,

I can understand your frustrations. Lucas has been

stable for periods of time and then bam it hits you in

the face. Hang in there and know there are those of

us out there that can understand your frustrations.

Unfortunately mito is so hard to diagnose and

understand even with those who are experts. Enjoy

each day and try not to look too far in the future.

Loriann- mom to and 12 yr old twins and

Lucas 9 yrs old with nonspecific mito, FOD(LCHAD), J-J

tube fed, global developmental delays, etc.

--- matts_mom96 wrote:

>

> I feel like we've been hit with a ton of bricks, the

> same feeling i

> had when Matt was 1st diagnosed 7 years ago. We got

> through that

> initial shock, and life got back to somewhat normal

> routine, and we

> incorporated Matts disability into our daily lives,

> like clock work,

> everything was going so smoothly. Over the past few

> years Matts

> white and gray matter lesions didnt grow or spread

> and no new ones

> were found, seizures were under control, his g-tube

> was a blessing,

> special ed going great, he was growing, thriving,

> learning, he was

> even getting stronger, so well that his pediatrician

> at one point

> said " looks like hes outgrowing these problems " .

> His point being

> that the mito somehow was in remission, and Matt was

> outgrowing it.

> Even the pdd-autism, he started socializing, and

> less fustrated, he

> even learned how to read which no one thought

> possible. Sure there

> were still things like, incontinence at night, cant

> tie his shoes,

> little things that just didnt matter anyway,

> nobodies perfect. And

> being told that Matt had the slowest progressing

> mito, really gave

> us hope. WE had the biggest and best 8th birthday

> celebration a kid

> could have. THen those little things turned into

> more little things,

> couldnt ride his bike anymore, muscle spasms that

> had him screaming

> in pain, reflux back with a vengence, all things

> that we could deal

> with and handle. And as the months go by, more

> things, severe

> fatigue, and not wanting to go outside to play

> anymore, coming home

> from school and sleeping for two hours and then no

> energy to do

> homework, diagnosed with cough varient ashma, and

> then migrains

> started, and still all things that we could deal

> with. WE meet with

> a new metabolic/neuro specialist, his field is mito!

> Not that Matts

> origional neuro wasnt great, he was and still is.

> But Dr Marks is

> just so more knowledgable. So he reads all Matts

> records, and

> concludes yes theres a regression going on, he

> orders new blood

> work, that shows there are definite problems, we get

> a new MRI and

> MRA and wham, two new white matter lesions not in

> the left lobe

> where the others are, but now in the frontal lobe.

> Where the hell

> are these lesions coming from?!! After all these

> years and mri's

> every year why all of a sudden all this is

> happening? Matt now

> getting rushed to the hospital from school from a

> severe crash in

> gym class. An 8 year old child also with

> tacticardia, and two weeks

> before got a clean bill of health from our

> cardiologist, Dr Marks

> convinced that primary diagnoses MERFF is wrong, and

> looking into

> MELAS/ complex one. We've added extra feedings via

> g-tube to help

> with nutrician and weight gain, and still he is

> fatigued, and not

> gaining wieght. Still getting migrains with new

> medications, im

> almost afraid to say it, but at least we have been

> able to lower

> Matts seizure meds without incident. We just got

> word that all

> monies are in place for Matt to get his mtdna blood

> work done will

> go to St hosp, next week for that, 50/50

> chance of mt being

> found in blood, if not found Matt will have to have

> another muscle

> biopsy, although his 1st biopsy showed red ragged

> fibers, the mt was

> never found. And of course my biopsy didnt show

> mtdna, so my son

> has to go through all this and God i pray this will

> show the

> specialist what they need to know to help Matt, and

> me. Im so

> tired, im fustrated, dealing with insurance company

> that no longer

> wants to pay for carnitor, im now buying over the

> counter just to

> keep my head above water, because without the

> cocktail im useless,

> literally! I just want to scream, but that wont

> help, i cry and get

> on with things but thats not helping either. I read

> the post of

> other families and we are all in the same boat,

> paddling together to

> keep from sinking, pulling together to keep our

> sanity, I think this

> is an awesome group that knows more than most

> doctors, families that

> are strong in the face of adversity, but when we

> mothers are alone,

> our fears are there, our hearts are breaking, i dont

> know if i can

> take anymore!!! I dont know if i can take anymore!!

> It hurts so

> bad, that i cant kiss this boo-boo away, my heart is

> breaking. I

> dont know what to do, i keep praying but starting to

> lose faith at

> times, i dont know what to do! Thanks for listening

> any prayers

> would be appreciated, and our family is praying for

> all here, I know

> you understand my fears as you all have them too,

> our plates are

> full and the cups are overflowing, God please help

> us all. Barb

>

March 12, 2005

I understand what you are feeling. It is really frustrating to go

along thinking all is going well and you start to get " comfortable " only to

be knocked flat by new symptoms, new diagnosis's, increased fatigue, new

evidence in brain scans, etc. Mito seems to be a roller coaster ride and

you just can't ever seem to get off. Matt is special to our family and I

know our kids have been praying for him. I know the kids' support group

hasn't been working quite as I had hoped it would, but I know the few times

Leah and Isaac have written to and received notes from Matt have caused them

to really care for him. Let him know my kids are thinking about him and

maybe I will have Leah write to him sometime soon. I am glad you are able

to share your feelings with the group and hope some of us can help you a

little by knowing you aren't alone. It is good to get it out! That is one

thing I love about this group. Keep letting us know how Matt is doing.

Hope he starts improving in his energy level. We are dealing with the same

issue in Zipporrah.

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

a photo look into what Mito looks like

Darla: mommy to

Asenath (5) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

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

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

gastric emptying issues...

Zipporrah (17 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, disautonomia,

hypertonicity, migraines, possible seizures, dumping syndrome, iron

deficiency...

Luke (16)migraines, sensory issues, & some evidence of SLE's...

Leah (14), Rachael (13), Isaac (11), Tirzah (8), Kezia (4),

Marquis (3) prenatal drug & alcohol exposure with likely FAS, behavioral

issues, SID...

Joey (15 months) with hydrocephalus, dysgenesis of the corpus callosum,

encephalomalacia & leukomalacia, possible arachnoid cyst,