Re: Darlene - Is early puberty common with Mito?

[Guest guest]

I am sorry to hear about his heart. That is one area I have always

feared being affected. Thus far the girls are ok that we know of, although

Zipporrah just had her first heart tests just during the last trip to Mayo

and so we haven't heard the results yet.

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)

Re: Darla - Is early puberty common with Mito?

>

> Darla,

>

> That is interesting. J.D. cut his first tooth at 2 months; therefore,

> he

> was born teething. Actually he was almost a month overdue so surprised he

> didn't go straight to school

>

> It does make since to me about the teeth since some mito kids cells

> age

> rapidly or deteriorate.

>

> Also, I think when we question non-trained mito drs, most inquiries

> are

> brushed off as nonchalant, a virus or heredity thus making a mito

> diagnosis

> even more challenging.

>

> We returned from the mayo clinic right before the holidays. J.D.'s

> heart

> is more affected and he is one step from cardiomyphathy. Our next visit is

> planned for June.

>

> Pray you have a good trip with positive information next month.

>

> Darlene

>

>

>

>

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

>