question regarding disease progression

[Guest guest]

Hi all,

Since I first posted Craig's been worsening. The shakiness,

weakness, fatigue, ataxic episodes are resurfacing. Thank goodness,

no seizures (yet?), but he has been " out of it " a lot, and getting

that giddy, spacey look he gets (have any of you seen that before?).

How have you experienced the progression of the disease? Does it

come in spurts? Have your kids seemed to be stable for awhile, even

improving, and then it hits again? Do you find that the supplements

work for a time, and then lose their effect? Do you keep upping the

doses and, if you do, has it helped?

So many questions, all of the sudden. Craig has been so stable. I

hate to be back in the land of uncertainties and fear, but here we

are again.

I'm also wondering how many of you out there have a child like Craig

who in so many ways is lucky to be so healthy. His organs are not

affected (yet?), " just " his brain and muscles? He is not truly sick

(my heart goes out to all who have children in and out of the

hospital, on g- tubes, etc.), and yet he is so affected by this

disease neurologically.

Thanks for listening.

Donna

Mom to Craig (8 with unspecified mito) and Dalton (6 with possible

mito, but doing very well with treatment)

[Guest guest]

My daughter often has times of regression during any type of virus, or stress. Dr. Cohen has labeled them "brown outs". Actually she is having one right now. This one seems to be affecting her coordination and energy levels the most. I'm almost ready to put a helmet on her because she can hardly walk through a room without falling. Since she is weaker right now her arms cannot support the fall, therefore she bangs her head alot. This time it is from a cold that has been going around.

Thankfully, she has always recovered from these episodes with no major setbacks. She has had them last from a matter of a few days, to the longest lasting over 3 months.

Currently we do not increase her cocktail meds when she is going through these. We do, however, sometimes have to add different things depending on what is affected at the time. One example would be Prevacid for reflux, but we have a whole pharmacy in the cupboard for practically anything.

Find just what you're after with the new, more precise MSN Search - try it now!

[Guest guest]

Hi Donna:

That is Leah, too. Her brain and muscles are affected. She doesn't

have very many medical issues. She has never had a seizure that we are

aware of. Just her eyes are affected and she can't walk, crawl, stand,

but can sit up for periods of time and she knows alot of things but

isn't anywhere near a 7 year old cognitively wise.

Right now we are treating Leah for reflux. That is new. And they

noticed at school she was weak and floppy. I believe it is from waking

up at night with the reflux and she is fighting a minor cold. That has

been the worse of her illnesses this year. Knock on wood. We don't

increase her supplements. We just make sure she is getting proper

nutrition and the best thing for Leah is sleep. She is still sleeping

today after 12 hours. And it is solid sleep, too. So that is where we

are at.

Nerenhausen

mom to Leah

>

>

> Hi all,

>

> Since I first posted Craig's been worsening. The shakiness,

> weakness, fatigue, ataxic episodes are resurfacing. Thank goodness,

> no seizures (yet?), but he has been " out of it " a lot, and getting

> that giddy, spacey look he gets (have any of you seen that before?).

>

> How have you experienced the progression of the disease? Does it

> come in spurts? Have your kids seemed to be stable for awhile, even

> improving, and then it hits again? Do you find that the supplements

> work for a time, and then lose their effect? Do you keep upping the

> doses and, if you do, has it helped?

>

> So many questions, all of the sudden. Craig has been so stable. I

> hate to be back in the land of uncertainties and fear, but here we

> are again.

>

> I'm also wondering how many of you out there have a child like Craig

> who in so many ways is lucky to be so healthy. His organs are not

> affected (yet?), " just " his brain and muscles? He is not truly sick

> (my heart goes out to all who have children in and out of the

> hospital, on g- tubes, etc.), and yet he is so affected by this

> disease neurologically.

>

> Thanks for listening.

>

> Donna

>

> Mom to Craig (8 with unspecified mito) and Dalton (6 with possible

> mito, but doing very well with treatment)

>

>

>

>

>

>

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

>

[Guest guest]

Dear ,

Thanks so much for your reply. Craig is the same way exactly. He wears a helmet all the time, and it has saved his head many a hard bang. He is much worse during illness too, but he doesn't seem to be sick at all this time. I keep hoping his nose will start running so I will know this is a temporary setback and not a permanent one like he has had so many times before.

How old is your daughter? Has she been effected from birth or with a later onset? Craig was about 18 months- two years old when he started having occassional trouble walking. It kept getting worse from there, but he has been improving over the past seven months. Does your daughter have a specific diagnosis?

I really appreciate your input.

Donna

RE: question regarding disease progression

My daughter often has times of regression during any type of virus, or stress. Dr. Cohen has labeled them "brown outs". Actually she is having one right now. This one seems to be affecting her coordination and energy levels the most. I'm almost ready to put a helmet on her because she can hardly walk through a room without falling. Since she is weaker right now her arms cannot support the fall, therefore she bangs her head alot. This time it is from a cold that has been going around.

Thankfully, she has always recovered from these episodes with no major setbacks. She has had them last from a matter of a few days, to the longest lasting over 3 months.

Currently we do not increase her cocktail meds when she is going through these. We do, however, sometimes have to add different things depending on what is affected at the time. One example would be Prevacid for reflux, but we have a whole pharmacy in the cupboard for practically anything.

Find just what you're after with the new, more precise MSN Search - try it now! Please contact mito-owner with any problems or questions.

[Guest guest]

Hi ,

Thanks so much for taking the time to tell me your experiences. It makes me realize just how different each of our kids are. Although Craig is affected neurologically, it has been a progressive thing. He did start out developing normally until about 2 yrs. old. He is still walking and talking, although he wears a helmet for falls and uses a wheelchair at school for safety and to avoid fatigue. He started having seizures a couple years ago, although he hasn't had one since starting on magnesium orotate last summer. I see warning signs that they may be coming back though.

Has Leah been pretty much the same all her life? (I know you said reflux was new, but anything else?). Do you know what kind of mito she has? (Sorry I can't remember from your previous posts). I am trying to understand the different kinds and presentations. Guess nobody does really?

All the best to you and your family. Thanks for sharing with me.

Donna

Re: question regarding disease progression

Hi Donna:That is Leah, too. Her brain and muscles are affected. She doesn'thave very many medical issues. She has never had a seizure that we areaware of. Just her eyes are affected and she can't walk, crawl, stand,but can sit up for periods of time and she knows alot of things butisn't anywhere near a 7 year old cognitively wise.Right now we are treating Leah for reflux. That is new. And theynoticed at school she was weak and floppy. I believe it is from wakingup at night with the reflux and she is fighting a minor cold. That hasbeen the worse of her illnesses this year. Knock on wood. We don'tincrease her supplements. We just make sure she is getting propernutrition and the best thing for Leah is sleep. She is still sleepingtoday after 12 hours. And it is solid sleep, too. So that is where weare at. Nerenhausenmom to Leah> > > Hi all,> > Since I first posted Craig's been worsening. The shakiness, > weakness, fatigue, ataxic episodes are resurfacing. Thank goodness, > no seizures (yet?), but he has been "out of it" a lot, and getting > that giddy, spacey look he gets (have any of you seen that before?).> > How have you experienced the progression of the disease? Does it > come in spurts? Have your kids seemed to be stable for awhile, even > improving, and then it hits again? Do you find that the supplements > work for a time, and then lose their effect? Do you keep upping the > doses and, if you do, has it helped?> > So many questions, all of the sudden. Craig has been so stable. I > hate to be back in the land of uncertainties and fear, but here we > are again.> > I'm also wondering how many of you out there have a child like Craig > who in so many ways is lucky to be so healthy. His organs are not > affected (yet?), "just" his brain and muscles? He is not truly sick > (my heart goes out to all who have children in and out of the > hospital, on g- tubes, etc.), and yet he is so affected by this > disease neurologically. > > Thanks for listening.> > Donna> > Mom to Craig (8 with unspecified mito) and Dalton (6 with possible > mito, but doing very well with treatment)> > > > > > > Please contact mito-owner with any problems or questions. >

[Guest guest]

 

 

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

question regarding disease progression

Hi all,

Since I first posted Craig's been worsening. The shakiness,

weakness, fatigue, ataxic episodes are resurfacing. Thank goodness,

no seizures (yet?), but he has been " out of it " a lot, and getting

that giddy, spacey look he gets (have any of you seen that before?).

How have you experienced the progression of the disease? Does it

come in spurts? Have your kids seemed to be stable for awhile, even

improving, and then it hits again? Do you find that the supplements

work for a time, and then lose their effect? Do you keep upping the

doses and, if you do, has it helped?

So many questions, all of the sudden. Craig has been so stable. I

hate to be back in the land of uncertainties and fear, but here we

are again.

I'm also wondering how many of you out there have a child like Craig

who in so many ways is lucky to be so healthy. His organs are not

affected (yet?), " just " his brain and muscles? He is not truly sick

(my heart goes out to all who have children in and out of the

hospital, on g- tubes, etc.), and yet he is so affected by this

disease neurologically.

Thanks for listening.

Donna

Mom to Craig (8 with unspecified mito) and Dalton (6 with possible

mito, but doing very well with treatment)

Please contact mito-owner with any problems or questions.

[Guest guest]

Have you thought about the possibility that the spacey looks are

actually petite mal seizures? My daughter Asenath (and possibly Zipporrah

too) have them. It just seems like they are staring off into space for a

short period of time and then they are back to normal again. At times a

cluster will happen and then they are spacey for much longer periods of time

though.

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)

question regarding disease progression

>

>

> Hi all,

>

> Since I first posted Craig's been worsening. The shakiness,

> weakness, fatigue, ataxic episodes are resurfacing. Thank goodness,

> no seizures (yet?), but he has been " out of it " a lot, and getting

> that giddy, spacey look he gets (have any of you seen that before?).

>

> How have you experienced the progression of the disease? Does it

> come in spurts? Have your kids seemed to be stable for awhile, even

> improving, and then it hits again? Do you find that the supplements

> work for a time, and then lose their effect? Do you keep upping the

> doses and, if you do, has it helped?

>

> So many questions, all of the sudden. Craig has been so stable. I

> hate to be back in the land of uncertainties and fear, but here we

> are again.

>

> I'm also wondering how many of you out there have a child like Craig

> who in so many ways is lucky to be so healthy. His organs are not

> affected (yet?), " just " his brain and muscles? He is not truly sick

> (my heart goes out to all who have children in and out of the

> hospital, on g- tubes, etc.), and yet he is so affected by this

> disease neurologically.

>

> Thanks for listening.

>

> Donna

>

> Mom to Craig (8 with unspecified mito) and Dalton (6 with possible

> mito, but doing very well with treatment)

>

>

>

>

>

>

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

>

[Guest guest]

Donna,

I do not wish to scare you but Lucas has had

regression episodes. He started out with cortical

visual impairment, and global developmental delay. He

learned to walk when he was four but then he started

further decline. His pituitary gland stopped

producing thyroid. His motility and gastric emptying

slowed. He ended up with a J-tube and a G-tube. A

year ago his reflux became worse and now we vent his

G-tube 17-20 hours a day. His ataxia has varied at

times and currently his walking has not recovered

after his bout with influenza on 2/10. Lucas was born

Mar. 12, 1996. After his muscle biopsy in Aug of

1998, we put him on the supplements. After getting

his tubes we had difficulty giving some of the

supplements so we stopped some for a period of time.

Now we have returned to at least giving Thiamine (B1),

and we never really stopped his carnitor and CoEnzyme

Q 10. We had been on Vitamin c as well as B-complex

but after clogging up tube extensions it was not worth

it. HTH,

Loriann-mom to and 12 yr old twins and

Lucas almost 9 with nonspecific mito disorder, FOD

(LCHAD), hypothyroid secondary to pituitary gland,

acute onset of febrile seizures, ataxia, J-J tube fed,

GERD, abnormally slow motility, cortical visual

impairment, global developmental delays

--- craigsstory wrote:

>

>

> Hi all,

>

> Since I first posted Craig's been worsening. The

> shakiness,

> weakness, fatigue, ataxic episodes are resurfacing.

> Thank goodness,

> no seizures (yet?), but he has been " out of it " a

> lot, and getting

> that giddy, spacey look he gets (have any of you

> seen that before?).

>

> How have you experienced the progression of the

> disease? Does it

> come in spurts? Have your kids seemed to be stable

> for awhile, even

> improving, and then it hits again? Do you find that

> the supplements

> work for a time, and then lose their effect? Do you

> keep upping the

> doses and, if you do, has it helped?

>

> So many questions, all of the sudden. Craig has

> been so stable. I

> hate to be back in the land of uncertainties and

> fear, but here we

> are again.

>

> I'm also wondering how many of you out there have a

> child like Craig

> who in so many ways is lucky to be so healthy. His

> organs are not

> affected (yet?), " just " his brain and muscles? He

> is not truly sick

> (my heart goes out to all who have children in and

> out of the

> hospital, on g- tubes, etc.), and yet he is so

> affected by this

> disease neurologically.

>

> Thanks for listening.

>

> Donna

>

> Mom to Craig (8 with unspecified mito) and Dalton (6

> with possible

> mito, but doing very well with treatment)

>

>

>

>

>

>