Re: when to let them say enough

[Guest guest]

I was wondering how old your daughter is. My two that are belived to

have Mito are only 5 years and 16 months so they don't have much of a say

thus far in their care. BUT... my oldest son, Luke, who turns 17 next

month, also deals with Mito symptoms including migraines and some suspected

SLE's. MELAS has been the best match up with our family but the labs say it

is not the type we deal with thus far. With Luke being as old as he is, we

have had to let him decide different things by himself and still try to also

make sure he is not harming himself. I have had many talks with him about

pacing himself and not overdoing it but ultimately, he has to decide how

much he will do. Last fall/winter we were very worried about him as he

seemed to have very low energy compared to normal and any time he would

exercise he would look terrible afterwards and have migraines and sometimes

even SLE symptoms. This spring, however, he has been totally energized and

we are much more lenient in his activities. Because Luke is pretty

respectful and will listen to us and try to follow our wishes we have only

had to speak with him about what we feel would be best for him, but

depending on the age of your child and the attitude they have toward the

disease and their desire to do things that are not very good for them in the

light of Mito, things we would do would be different. We definitely need to

educate our kids in what is good and bad to do and try to enforce as much as

possible the important things like meds, doc appointments, and limiting

certain things, but ultimately when they get older, there isn't much we can

do other than positive discussions and lots of prayer that they choose the

right paths. More than anything I just wanted to let you know you aren't

alone in this issue.

See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org (a

photo look into Mito)

Darla: mommy to

Asenath (5) Probable Mito, CNS Vasculitis, strokes, migraines, seizures,

G-tube, hypotonicity, disautonomia, SID, global delays, cyclic vomiting,

bladder issues, some wheelchair use, eye issues, gastric emptying issues...

Zipporrah (17 months) Probable Mito, strokes, neuro-motor planning, SID,

GERD, dysphasia, G-tube fed, speech delays, extreme fatigue, aberrant

subclavian artery, disautonomia, hypertonicity, migraines, possible

seizures, dumping syndrome, iron deficiency...

Luke (17) migraines, sensory issues, & some evidence of SLE's...

Leah (14), Rachael (13), Isaac (11), Tirzah (8), Kezia (4), Marquis (3)

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

encephalomalacia & leukomalacia, G-tube, GERD, immobile, severe dev. delays,

left hemiplegia (arm)...

(15 months) SID, dev. delays, right hemiparesis issues...

when to let them say enough

>

>

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> I have daughter with the MEALS form of mito.

> She is doing really well now, but we have

> had some really iffy days. She has trouble

> eating w/o choking, walking distance, ADHD,

> seziures some with stroke like symptoms.

> She drinks 3-4 cans of pedisure aday but

> is starting to rebel at all attempts to

> keep her healthy. We try to adapt every thing

> so that she can go with her sisters and friends.

> If you have a child with these issues we would

> love to hear how you deal with them becoming

> thier own person but still keeping them safe.

> She is our little angle with a tilted halo.

> Kathy

> e's mom

>

>

>

>

>

>

>

>

>

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

>

[Guest guest]

Hi Kathy,

We are just now starting to go through this with Joey. He wants to know why his brothers do not wear AFO's, wear heart monitors, take breathing treatments and so on. We try to explain to him it makes him heathly. He now follows that with...Dakota is healthy and he does not go to the doctor all the time. There are many nights that I cry myself to sleep because I feel soooo mean. And they do NOT understand. Even when they are older like e, they still do not understand. And you really hate to explain it in detail. Even if Joey is younger, I hate to explain it in detail. (Like your heart is getting weaker so we have to keep a closer eye on it)

Yet as adults we know what is best for them and we have to do it. I guess we just have to pick out battles. I hold Joey's hand every where we go, I really need to get over that(he is 6 years old now). Like we have found we do not let Joey climb on our rocks at home because he always falls, yet we have started letting him ride his 4 wheeler in the grass. When he falls off, at least he falls on grass. Yet it took us a long time just to allow him to fall. I still freak out on the inside. You know Mr. Joey who has has 3 concutions. You have been there done that!!!

So I guess we have to pick our battles and do what keeps out kids healthier and safe longer. And let the smaller things slide. As hard as it is. Hope this helps!!!

Call me and we will do lunch!!!

Tamara(Joey's mommy)fugate_kathy wrote:

I have daughter with the MEALS form of mito. She is doing really well now, but we havehad some really iffy days. She has troubleeating w/o choking, walking distance, ADHD,seziures some with stroke like symptoms.She drinks 3-4 cans of pedisure aday butis starting to rebel at all attempts to keep her healthy. We try to adapt every thingso that she can go with her sisters and friends.If you have a child with these issues we wouldlove to hear how you deal with them becoming thier own person but still keeping them safe.She is our little angle with a tilted halo. Kathy e's mom Please contact mito-owner with any problems or questions. __________________________________________________

[Guest guest]

Tamara,

Thank you

We were having a really bad week. I cried that you understood that I'm not being mean we are just trying to keep her safe and healthy. Our newest drama is she stoped drinking her pediasure and got plugged. Then I had to give her mineral oil and the fleets to try and help her. It broke my heart when she told me if I loved her I wouldn't make her drink the med. I told her that is why I made her.

On a good not I talked with the director of 4-h camp and e gets to go no questions asked. The director said that if she need something just to let him know.

Don't for get to plan on the MD cardinals game this year Joey will have a blast.

We will definitely have to do lunch. Just let me know when. Thank you for your understanding.

Kathy e's momTamara wrote:

Hi Kathy,

We are just now starting to go through this with Joey. He wants to know why his brothers do not wear AFO's, wear heart monitors, take breathing treatments and so on. We try to explain to him it makes him healthy. He now follows that with...Dakota is healthy and he does not go to the doctor all the time. There are many nights that I cry myself to sleep because I feel soooo mean. And they do NOT understand. Even when they are older like e, they still do not understand. And you really hate to explain it in detail. Even if Joey is younger, I hate to explain it in detail. (Like your heart is getting weaker so we have to keep a closer eye on it)

Yet as adults we know what is best for them and we have to do it. I guess we just have to pick out battles. I hold Joey's hand every where we go, I really need to get over that(he is 6 years old now). Like we have found we do not let Joey climb on our rocks at home because he always falls, yet we have started letting him ride his 4 wheeler in the grass. When he falls off, at least he falls on grass. Yet it took us a long time just to allow him to fall. I still freak out on the inside. You know Mr. Joey who has has 3 concutions. You have been there done that!!!

So I guess we have to pick our battles and do what keeps out kids healthier and safe longer. And let the smaller things slide. As hard as it is. Hope this helps!!!

Call me and we will do lunch!!!

Tamara(Joey's mommy)fugate_kathy wrote:

I have daughter with the MEALS form of mito. She is doing really well now, but we havehad some really iffy days. She has troubleeating w/o choking, walking distance, ADHD,seziures some with stroke like symptoms.She drinks 3-4 cans of pedisure aday butis starting to rebel at all attempts to keep her healthy. We try to adapt every thingso that she can go with her sisters and friends.If you have a child with these issues we wouldlove to hear how you deal with them becoming thier own person but still keeping them safe.She is our little angle with a tilted halo. Kathy e's mom Please contact mito-owner with any problems or questions.

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