Re: -- Daphne Did Not Have a Mito Disease

[Guest guest]

We were looking at Moya-Moya before Mito for Asenath as she had a

narrow artery seen in 2002 and then began having stroke symptoms on both

sides of the body which is very common with the condition. However, the

docs felt it wasn't Moya-Moya because the typical " puff of smoke " which the

name is derived from was never and still is not seen in Asenath's angiograms

and MRA's. She does currently have four narrow arteries and was diagnosed

with CNS Vasculitis last year which is another very rare form of artery

narrowing in the brain. There has been two other families besides ours on

this list that also have had Vasculitis in children also believed to have

Mito like in Asenath. I am glad the operation was performed in time for

your child as I know it is a very dangerous and deadly disease that is quite

scary to treat. Thank you for sharing your info with us and feel free to

speak more about this or ask me more about our experience with the narrow

arteries and Moya-Moya possibility.

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...

Daphne Did Not Have a Mito Disease

>

>

> Hi everyone. It's been a long time since I've posted, so you all

> may not remember me. I just wanted to share my daughter's story in

> case it may end up helping someone.

>

> Daphne had seizures at three months old (infantile spasms), became

> hypotonic and had severe developmental delays. She also required g-

> tube feeds. Her MRI showed brain atrophy and delayed myelinization

>

> After many genetic tests, her doctors began to beleive that Daphne

> had a mito disorder and she had a muscle biopsy in October (which

> still isn't back yet!!)

>

> In January, however, after having surgery to correct a heart defect,

> Daphne suffered a stroke. She underwent an MRI with contrast (This

> is important: her previous MRIs were without contrast and at a

> different hospital), and was discovered to have something called

> Moyamoya disease.

>

> Moyamoya disease is caused by narrowed/blocked carotid arteries that

> deliver blood to the brain. It causes successive ischemic events

> (TIAs and strokes) and mental decline. Simply put, Daphne's brain

> was shrinking/ not developing because it was not getting enough

> blood!

>

> Moyamoya is treatable. Daphne had revascularization surgery this

> March, which will hopefully give her brain a new supply of blood and

> prevent future strokes.

>

> I have read about other cases where MELAS was diagnosed when the

> patient actually had Moyamoya disease. Moyamoya can cause mental

> decline and it can be responsible for stroke-like episodes.

>

> Unfortunately, Daphne had a second stroke a couple of days after her

> first one in January, but she seems to be making a good recovery.

>

> If your child has had an inconclusive muscle biopsy, and you still

> don't feel like you have an answer, please consider asking your

> child's neurologist about moyamoya. It takes an MRI WITH CONTRAST,

> or, preferably, an MR Angiogram, to get a diagnosis. The disease

> is very rare and most neurologists will not have much experience

> with it. Daphne's neurologist told us it would have been the last

> thing he'd have considered for Daphne.

>

> Please feel free to email me at moyer305@... if you have any

> questions. Also the website, moyamoya.com has some great

> information.

>

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

>