Re: Laurie- new to group and am searching

January 10, 2005

Many of the symptoms you spoke of that your children have, my children

also display. Quite a few of our kids have lots of the same things as well.

My youngest dealt with the severe reflux and led to a fundo and G-tube. She

also has had strokes hit her mouth and throat causing dysphasia and an

inability to eat orally. We are just beginning to initiate oral feedings at

14 months of age and hoping she will be able to get some of her nutrition

that way rather than being 100% tube fed as she is presently. Both my girls

deal with speech delays due to the stroke activity (also known as regression

or Mito crashes in this group). This hits cognitively as well as physically

affect many areas of their bodies as in your children. Weak trunk muscles,

hypotonia, global delays, progressive neurological damage in different

forms, incontinence, floppy bladders, extreme fatigue, wheelchair use for

distances, eye problems, ADHD symptoms, gastric dumping/emptying times to

quick here causing chronic diarrhea, disautonomia causing heat regulation

problems, breathing and heart rate irregularities, exercise intolerance...

They are all issues we deal with in both my girls as well. We also deal

with the asthma and problems with illnesses. Each illness causes stroke

activity that makes them lose ground in abilities or in cognitive areas and

then they have to try to relearn them. Unfortunately with hit after hit,

often we do not get back to age appropriate levels. Asenath is currently at

a 2-3 1/2 year level in all areas and is almost 5 now. Zipporrah is falling

behind in several areas but still going forward as well thankfully. We hate

viruses in this home and yet seem to always have them present through the

winter months.

Your children sound very much like many of the children in this group.

I am sorry your children have been dealing with so much. I hope we are able

to help you and give you the support you are looking for. Let me know if

you have any further questions that I might be able to help you with.

See www.caringbridge.org/ia/mitomomof9 and this link to see a real look

into Mito using a photo collage of my girls at www.heartbeatsformito.org

Darla: mommy to

Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting...

Zipporrah (12 months) Mito, strokes, neuro-motor planning dysfunction, SID,

GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery,

disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping

syndrome, iron deficiency...

Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), &

Marquis (2) (some with Mito symptoms)

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

>

January 10, 2005