Re: Crisis with no sign of cold, virus or infection causing it...

[Guest guest]

Myst

Sometimes Max just needs a down day...the signs are there way before she recognizes them.....she'll just hang out on the couch, have Pediasure instead of regular food....and most times towards the end of the day she seems to have a short sprut of energy and she'll lok much better...however, it is short lived....at these times I am always waitng for the shoe to drop and see what infection is heading our way....then there are none....just a way for her to refuel....for a day, or 2 or 3....

HOpe that is all it is

best regards,

rosy, mum to max 5 1/2

[Guest guest]

Myst,

Doesn't seem fair that we can be wishing that our

children get sick so we can have an answer to our

concerns. Sure hope they find out what is going on.

Sure hope the doctor gets back to you quickly.

Loriann-mom to and 12 yr old twins and

Lucas almost 9 with nonspecific mito disorder, FOD

(LCHAD), hypothyroidism, ataxia, acute onset of

febrile seizures, global developmental delays, asthma,

cortical visual impairment, J-J tube fed, impaired

motility, GERD

--- mr_lucy wrote:

>

>

> Hi guys!

>

> Well, I have a question for all of you.

>

> It looks like Abigail is on her way to another

> hospital visit.

> Yesterday she slept the entire day after sleep 12

> hours the night

> before. Prior to that she had been falling a lot for

> 5 days. She is

> better today however she is not eating well, and she

> is having a

> really hard time getting up and down the stairs. She

> slways has a

> hard time, but right now it is really difficult for

> her. She is also

> laying around and watching tv. Not Abigail's style.

>

> So now for my question...Raise your hand if your

> child goes into

> these tail spins without a virus or cold in sight.

> No temp, no runny

> nose, no sore throat. Not even so much as a

> sneeze!!!

>

> A while back they desided not to do Abigail's blood

> work bi weekly

> anymore. She frankly would be in the hospital every

> other week if

> they did.

>

> She always has high CK levels and myoglobin in her

> urine. I have put

> a call into her doctor. You know...the one where the

> nurse knows who

> I am by the sound of my voice and tells me she will

> have the doctor

> call me bask ASAP.

>

> Abigail only went into crisis when she was ill with

> a cold, virus or

> infection. Now it seems to happen for no reason at

> all. It isn't

> fair, I can't even see it coming anymore.

>

> Thx for listening...I have probibly said it all

> before.

>

> Myst

>

>

>

>

>

>

>

[Guest guest]

Grace does this. Often, though, it means she will be getting sick soon. We have seen it for no apparent reason though. Thankfully the "unjust" ones seem to pass quicker.

CArrie Find files on your PC instantly with the new MSN Toolbar Suite beta – FREE!

[Guest guest]

We have been struggling with this issue as well and it is totally

frustrating. Overall with Asenath she has always done well apart from the

viral attacks. On the other hand, Zipporrah struggles whenever. She

definitely gets bad with viruses as well, but she also gets bad out of the

blue with no symptoms of viral attacks. We know there could be ear

infections or something we are missing but have also found that her fatigue

levels are much greater than Asenath's. We have found that if Zipporrah has

therapy once a week with either OT or PT that her energy level dramatically

decreases and when she skips weeks of therapy her energy will increase.

Many people who treat Zipporrah have been worried about her recently because

her energy level is so low that any amount of activity exhausts her and then

she stays that way for days. Her blood pressure has even been lower

recently due to the energy change. A 16 month old should be running and

playing not sitting looking drained and avoiding activity if possible. It

is sad to watch our kids struggle.

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)

Crisis with no sign of cold, virus or infection causing

it...

>

>

> Hi guys!

>

> Well, I have a question for all of you.

>

> It looks like Abigail is on her way to another hospital visit.

> Yesterday she slept the entire day after sleep 12 hours the night

> before. Prior to that she had been falling a lot for 5 days. She is

> better today however she is not eating well, and she is having a

> really hard time getting up and down the stairs. She slways has a

> hard time, but right now it is really difficult for her. She is also

> laying around and watching tv. Not Abigail's style.

>

> So now for my question...Raise your hand if your child goes into

> these tail spins without a virus or cold in sight. No temp, no runny

> nose, no sore throat. Not even so much as a sneeze!!!

>

> A while back they desided not to do Abigail's blood work bi weekly

> anymore. She frankly would be in the hospital every other week if

> they did.

>

> She always has high CK levels and myoglobin in her urine. I have put

> a call into her doctor. You know...the one where the nurse knows who

> I am by the sound of my voice and tells me she will have the doctor

> call me bask ASAP.

>

> Abigail only went into crisis when she was ill with a cold, virus or

> infection. Now it seems to happen for no reason at all. It isn't

> fair, I can't even see it coming anymore.

>

> Thx for listening...I have probibly said it all before.

>

> Myst

>

>

>

>

>

>

>

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

>