Re: Mama can't get sick

[Guest guest]

Heidi,

I too have been diagnosed with mito mostly autonomic issues related

to (orthostatic tach, syncope, excercise intolerance), fatigue,

Coq10 def, etc. It is hard to be sick, actually not being sick when

you have sick kids. I also have an immuno def too. I think it is

important to get tested because then you can start treatment which

can help you to feel better and in the long run make you feel better

and find problems and help you know how to deal with them (like the

GI issue) so you don't end up very sick before it is too late!

Good luck and let us know! Dawn

[Guest guest]

Hey, Heidi. Sad to hear you are under the weather (and then some). I know

it is not fun to be ill trying to care for kids. I have been battling a bad

cough with sore throat and chest myself for the past week and it is really

starting to get old! I can't imagine dealing with it for three months! My

throat is so sore when coughing that my chest aches, plus the RMH beds

unfortunately caused major upper back pain while there last and it doesn't

seem to be getting better even with ice, BenGay, Tylenol, and lots of

massage and cracking of my back by my hubby and kids. (Don't want to go to a

Chiro as they cost so much out of our pocket)

On the other matter, I have done lab work since Asenath started seeing

Dr. Whiteman. He is following my case as well as several of my kids. I

have had a bunch of abnormal metabolic labs and from that plus all my

symptoms past and present, he assumes I too have Mito. I am not planning on

doing a biopsy though as I am less affected than the girls so Dr. Whiteman

felt it probably wouldn't show anything more specific than Asenath's did.

Feel free to ask me any questions you may have and try to take care of

yourself. You need to keep healthy for your kids for sure!

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)

Mama can't get sick

>

>

> Hi All,

> We've had an interesting development here. I finally went to the

> doctors after coughing for 3 months, hadn't been seen since before

> was born (2 1/2 years ago). I had a chest Xray, pulmonary

> function tests, and a barium swallow, and things are not pretty. I

> have aspiration pneumonia, chronic changes in the right middle lobe,

> mucus plugs and bronchiectasis. All seems to be related to the

> problems seen on the barium swallow- reflux with aspiration, hiatal

> hernia, and esophageal dysmotility. The radiologist was concerned

> and he advised me to take one sip of fluid at a time, chew tiny bites

> thoroughly, and stick with soft foods until I see my GP. For pete's

> sake, this has probably been going on for a long time. I should be

> skinny by now!

> Of course, this has made me think about how it could be related to

> 's mito and profound GI problems, and now I'm wondering if I

> should get checked out. I'd love to talk to any mommies who have

> been tested for mito after having a child diagnosed.

> The difficult thing is that I just don't have time to take care of

> myself after doing what needs to be done for , Nick (autistic)

> and (6 and typical, but can sometimes be more work than Nick),

> working, etc. I have an extremely supportive, competent, loving

> husband who is concerned about me and does what he can (he took a

> double shift with last night so I could sleep). We are

> approved for 92 hrs/week of home nursing for but currently

> fill 35-40 hours. I've even looked into out-of-home respite

> placement but is too functional because she can pull to stand

> (can you believe it?).

> Nick is being evaluated by Dr. Korson in Feb and I wonder if I should

> make an appt for myself? Ugh.

>

> Thanks

> Heidi, Mom to , 2, mito myopathy, TPN dependent, intestinal

> pseudo obstruction, g tube for drainage, j for meds and tiny feeds,

> neurogenic bladder and cathed, RTA and ATN (kidney stuff), gall

> bladder issues, dysautonomia, anemia, dystonia, seizures, retinitis

> pigmentosa and blind, O2, yadda yadda, has great teeth!

>

>

>

>

>

>

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

>

[Guest guest]

Hi Heidi, dont wait get tested. it took me 6 years and progression

of this disease for me to get proper doctors and help, and all i

went through and my son Matt was diagnosed 6 1/2 years before me.

Get to a neurologist that knows about Mito. dont beat around the

bush with GP's who never heard of mito or think mito is to rare for

you to have even though your child has it. i dont think i would be

here right now if i didnt finally get tested, and out of the family

practice center that kept me from real diagnosis, and yes they knew

Matt had Mito because from birth they kept telling me Matt was fine

until he was 15 months old and was having gran mal seizures. I got

Matt out of that family practice and can only wish i would have left

then too. I am now with the family practice that Matt is with and

Matts pediatrician makes sure everyone who works there knows about

MITO so all the docs there and every intern who goes through there

will never misdiagnos a patient, they know what i have gone through

and they dont want that ingnorance to ever happen at their

practice. Its hard being a mom of healthy children when you feel

sick, let alone being a sick mom of a sick child, but lets just say

i found my rythem and now with treatment its not so hard. So please

dont wait, this disease is progressive, and there are alot more

treatment options today then there was years ago, and the specialist

in this field know so much more now than they did a few years back,

but there are still as many ignorant docs out there as there was

years ago too,who just will never make the connection even if your

child has mito, you got to make them make that connection so you can

get tested, and if a doc feels you dont have it cause your child

does, i say run as fast as you can to another doc who will help you

get tested. Hell the best thing that can happen is you get tested

and the test be negative, and the other best thing that can happen

is you get tested and if it is positive you'll get the treatment you

need so you can be there for your children. Oh and i learned to

hang up my " Super Mom " cape, i too didnt have time to be sick and

push those docs to listen to me the way i should have. You have to

take care of you so you can take care of your family. I Thank God

that my husband Bob, helped me get diagnosed, and that my older

children understand too, and pitch in and help, so i dont have to

pull out that super mom cape ever again, that cape can kill ya, even

if your healthy!!! Barb

[Guest guest]

Heidi,

I'm so sorry to hear of all that you're going through. I know it

can be very hard to find time to take care of yourself. I don't know

how you can find time to do all that you're doing already! I can't

even find time to go to the doctor or dentist. I really can't help

with that part of your problem, sorry.

About the esophageal dysmotility, though - Sheldon was just

diagnosed with the same thing by barium swallow in November. I really

don't know what to do about it, it's hard for me to know what to feed

him. He seems to do better with baby food or pureed foods (he doesn't

chew well at all) but he loves so many other foods like french fries,

toast, and pb & j and I don't know how dangerous it is for him to

have those things since he doesn't chew them much and isn't good about

taking bites. It wouldn't be much of an issue if we didn't have other

normal family members. If you find anything out about this problem,

I'd appreciate it if you could let me know. All I've found so far is

to use puree'd foods, give him frequent drinks while eating, and keep

him upright for a while after he eats.

I hope things get better for you!

Hi All,

We've had an interesting development here. I finally went to

the

doctors after coughing for 3 months, hadn't been seen since before

was born (2 1/2 years ago). I had a chest Xray,

pulmonary

function tests, and a barium swallow, and things are not pretty.

I

have aspiration pneumonia, chronic changes in the right middle

lobe,

mucus plugs and bronchiectasis. All seems to be related to

the

problems seen on the barium swallow- reflux with aspiration,

hiatal

hernia, and esophageal dysmotility. The radiologist was

concerned

and he advised me to take one sip of fluid at a time, chew tiny

bites

thoroughly, and stick with soft foods until I see my GP. For

pete's

sake, this has probably been going on for a long time. I should

be

skinny by now!

Of course, this has made me think about how it could be related to

's mito and profound GI problems, and now I'm wondering if

I

should get checked out. I'd love to talk to any mommies who

have

been tested for mito after having a child diagnosed.

The difficult thing is that I just don't have time to take care of

myself after doing what needs to be done for , Nick

(autistic)

and (6 and typical, but can sometimes be more work than

Nick),

working, etc. I have an extremely supportive, competent,

loving

husband who is concerned about me and does what he can (he took a

double shift with last night so I could sleep). We

are

approved for 92 hrs/week of home nursing for but currently

fill 35-40 hours. I've even looked into out-of-home respite

placement but is too functional because she can pull to

stand

(can you believe it?).

Nick is being evaluated by Dr. Korson in Feb and I wonder if I

should

make an appt for myself? Ugh.

Thanks

Heidi, Mom to , 2, mito myopathy, TPN dependent, intestinal

pseudo obstruction, g tube for drainage, j for meds and tiny

feeds,

neurogenic bladder and cathed, RTA and ATN (kidney stuff), gall

bladder issues, dysautonomia, anemia, dystonia, seizures,

retinitis

pigmentosa and blind, O2, yadda yadda, has great teeth!

Please contact mito-owner with any problems or

questions.

[Guest guest]

Thanks for all the support. What a tough situation. I have to

choose between coordinating my own care or 's right now.

has appts in Boston on Tues and I feel like I need to go

because she's having new and scary lung and kidney developments, but

I should really be on the phone finding a gastro for myself. DH is

really on me about following through with meds (albuterol makes my

heart race but I'm wheezing like crazy) and I know he means well.

It's just that I'm not used to being the one who needed to take it

easy, unless I was pregnant and then it was all for the baby and

ended the minute after birth. My Mom was sick while I was growing up

(her medical problems are too much like 's to be coincidental)

and I remember how hard it was for my sisters and I. I don't want

Nick and to have to go through that.

Yuck. Mito stinks.

Heidi, 's Mom

[Guest guest]

We sort of have a reverse situation to you here, I have been sick

for years with bizarre, random health problems, and the doctors

where never able to pin it down. After got sick, everything

fell into place, and they have strong suspicions that my problems

are also mito related...

I know what you mean about trying to 'choose' between your care and

your babies... I only have so much energy and effort to put into

coordinating medical stuff (and lets admit it, this can be a full

time job!), trying to do it for myself as well is overwhelming...

Because im pregnant, my own testing has been put on the back burner

for now, but the baby will be here any time now, and once im

recovered from that they will want to test me more thourouly and the

prospect of going through it all with myself is exhausting...

nevermind with BRandon and this new baby...

Im babbling...

Im sorry to hear about your tests... Im glad they have nailed down a

source for your problems though (thats usually half the battle), and

hope they can get it all under control relatively easily!

Keely

>

> Thanks for all the support. What a tough situation. I have to

> choose between coordinating my own care or 's right now.

> has appts in Boston on Tues and I feel like I need to go

> because she's having new and scary lung and kidney developments,

but

> I should really be on the phone finding a gastro for myself. DH

is

> really on me about following through with meds (albuterol makes my

> heart race but I'm wheezing like crazy) and I know he means well.

> It's just that I'm not used to being the one who needed to take it

> easy, unless I was pregnant and then it was all for the baby and

> ended the minute after birth. My Mom was sick while I was growing

up

> (her medical problems are too much like 's to be

coincidental)

> and I remember how hard it was for my sisters and I. I don't want

> Nick and to have to go through that.

> Yuck. Mito stinks.

> Heidi, 's Mom

[Guest guest]

Hi...

Well, in the midst of all that has been happening I am going through testing now myself. This all came on suddenly to me and I faced it reluctantly. I have always viewed any type of pain as something to work through. Lord, I went through all natural child birth twice, and avoid pain killers all together. Anyhow, I recently learned a lot of what I have been through in my life isn't normal. Thus I am just stepping onto the path to possible diagnosis myself.

Part of me is saying I must be crazy to go through this. The other part hopes it makes a possitive difference in some way. The fact is...if I couldn't be there for my family who would be? My husband who is a great man couldn't manage, and that is just a reality. He can not stand to focus on Abigail's illness alone.

I understand your feelings...I am right there with you. I am telling myself that whatever comes of all this does not change who I am or the role I play in my family. My heart is with you.

Myst

heidicoleman2002 wrote:

Hi All,We've had an interesting development here. I finally went to the doctors after coughing for 3 months, hadn't been seen since before was born (2 1/2 years ago). I had a chest Xray, pulmonary function tests, and a barium swallow, and things are not pretty. I have aspiration pneumonia, chronic changes in the right middle lobe, mucus plugs and bronchiectasis. All seems to be related to the problems seen on the barium swallow- reflux with aspiration, hiatal hernia, and esophageal dysmotility. The radiologist was concerned and he advised me to take one sip of fluid at a time, chew tiny bites thoroughly, and stick with soft foods until I see my GP. For pete's sake, this has probably been going on for a long time. I should be skinny by now!Of course, this has made me think

about how it could be related to 's mito and profound GI problems, and now I'm wondering if I should get checked out. I'd love to talk to any mommies who have been tested for mito after having a child diagnosed. The difficult thing is that I just don't have time to take care of myself after doing what needs to be done for , Nick (autistic) and (6 and typical, but can sometimes be more work than Nick), working, etc. I have an extremely supportive, competent, loving husband who is concerned about me and does what he can (he took a double shift with last night so I could sleep). We are approved for 92 hrs/week of home nursing for but currently fill 35-40 hours. I've even looked into out-of-home respite placement but is too functional because she can pull to stand (can you believe it?). Nick is being evaluated by Dr. Korson in Feb and I wonder if I

should make an appt for myself? Ugh.ThanksHeidi, Mom to , 2, mito myopathy, TPN dependent, intestinal pseudo obstruction, g tube for drainage, j for meds and tiny feeds, neurogenic bladder and cathed, RTA and ATN (kidney stuff), gall bladder issues, dysautonomia, anemia, dystonia, seizures, retinitis pigmentosa and blind, O2, yadda yadda, has great teeth!Please contact mito-owner with any problems or questions. __________________________________________________

[Guest guest]

Hi...

Well, in the midst of all that has been happening I am going through testing now myself. This all came on suddenly to me and I faced it reluctantly. I have always viewed any type of pain as something to work through. Lord, I went through all natural child birth twice, and avoid pain killers all together. Anyhow, I recently learned a lot of what I have been through in my life isn't normal. Thus I am just stepping onto the path to possible diagnosis myself.

Part of me is saying I must be crazy to go through this. The other part hopes it makes a possitive difference in some way. The fact is...if I couldn't be there for my family who would be? My husband who is a great man couldn't manage, and that is just a reality. He can not stand to focus on Abigail's illness alone.

I understand your feelings...I am right there with you. I am telling myself that whatever comes of all this does not change who I am or the role I play in my family. My heart is with you.

Myst

heidicoleman2002 wrote:

Hi All,We've had an interesting development here. I finally went to the doctors after coughing for 3 months, hadn't been seen since before was born (2 1/2 years ago). I had a chest Xray, pulmonary function tests, and a barium swallow, and things are not pretty. I have aspiration pneumonia, chronic changes in the right middle lobe, mucus plugs and bronchiectasis. All seems to be related to the problems seen on the barium swallow- reflux with aspiration, hiatal hernia, and esophageal dysmotility. The radiologist was concerned and he advised me to take one sip of fluid at a time, chew tiny bites thoroughly, and stick with soft foods until I see my GP. For pete's sake, this has probably been going on for a long time. I should be skinny by now!Of course, this has made me think

about how it could be related to 's mito and profound GI problems, and now I'm wondering if I should get checked out. I'd love to talk to any mommies who have been tested for mito after having a child diagnosed. The difficult thing is that I just don't have time to take care of myself after doing what needs to be done for , Nick (autistic) and (6 and typical, but can sometimes be more work than Nick), working, etc. I have an extremely supportive, competent, loving husband who is concerned about me and does what he can (he took a double shift with last night so I could sleep). We are approved for 92 hrs/week of home nursing for but currently fill 35-40 hours. I've even looked into out-of-home respite placement but is too functional because she can pull to stand (can you believe it?). Nick is being evaluated by Dr. Korson in Feb and I wonder if I

should make an appt for myself? Ugh.ThanksHeidi, Mom to , 2, mito myopathy, TPN dependent, intestinal pseudo obstruction, g tube for drainage, j for meds and tiny feeds, neurogenic bladder and cathed, RTA and ATN (kidney stuff), gall bladder issues, dysautonomia, anemia, dystonia, seizures, retinitis pigmentosa and blind, O2, yadda yadda, has great teeth!Please contact mito-owner with any problems or questions. __________________________________________________