Re: - Yet another viral attack!

[Guest guest]

Sorry to hear about 's problems and the other kids. Viruses just

seem to be way too prominent in the winter months. I am hoping for a quick

short bout this time around. After all the girls DID get their flu shot,

but boy you could have fooled me on that one!!! We must be hitting a

different strand of flu again.

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)

Re: Yet another viral attack!

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> I pray that your kids don't struggle too much while battling this

> virus. We ended up in the ER with my 16 year old over Thanksgiving.

> He had another episode of urinary retention. It was cold that evening

> (for Texans that is--the temperature was about 40) and we had gone to

> a holiday light parade with all of the cousins, aunts,uncles, and my

> parents. Evidentally the cold and the small amount of walking was too

> much for .

>

> We were 1000 miles from home in the small town in Indiana where my

> parents live. The ER doc was not able to cath him, so he called in a

> urologist who also was not able to cath him (despite repeated

> attempts). He wanted to put in a super pubic catheter directly into

> his bladder, but he wasn't sure that the local anesthesiologist would

> be willing to put under for the procedure. If couldn't

> urinate, they would have to transfer him to Riley in Indianapolis. I

> fed a snack hoping that raising his blood sugar would help.

> Gatorade given prior to blood draws usually helps with Evan's vascular

> tone and makes the sticks much easier, so I thought it was worth a

> try. Luckily was able to urinate a short time later.

>

> When we finally arrived back home in Texas all of the boys were sick

> with a nasty virus and Evan ended up missing school Monday and Tuesday

> and was out Wednesday, Thursday, and Friday. We have follow-up

> scheduled with 's local urologist to determine why they were not

> able to place the catheter. It could be neuromuscular or from scar

> tissue from the last ER visit in January. I was hoping to have

> illness protocols all worked out before the winter illnesses hit. All

> three of my boys were scheduled to see 's awesome neuromuscular

> specialist on Nov 5th to fine tune treatment protocols and draft

> illness plans, BUT the doctor was in the ICU with heart related

> problems and their appointment was re-scheduled for just after

> Christmas (with another doctor because 's doctor retired).

>

> What is even worse, was just diagnosed in Oct and his doctor was

> out shortly after and the report with the official diagnosis and

> treatment plan was never written. All the new doctor has to go on

> are the doctor's notes and diagnostic code which says metabolic

> disorder (there is no specific code for mito).

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

>