renal tubular issues

[Guest guest]

Hi All

I'm wondering what experience folks have had with renal tubular

acidosis and diabetes insipidus. is already on bicitra for

RTA but is having the diamox test on April 9 (as long as she behaves

until then). She is scheduled to have a dehydration test the

following Friday. This freaks me out because doesn't

tolerate being NPO for more than 4 hours. Apparently, she'll have to

fast all night and then wait at the lab and have blood and urine

tests every hour until she concentrates her urine (which she

typically doesn't do, hence the test).

Today we go back to the GI to talk about putting the central line

back in. She had hers removed last month when she had sepsis. The

folks at Boston Children's didn't want to risk anesthesia again and

she was kind of tolerating g tube feeds so they left it out. Since

she's been home she's had c diff and one cold after another and has

had a couple IV boluses through her ONE good vein that I don't want

her to lose. Hopefully, when they put her under for the hickman,

they can change her g tube (she has a bard... hate it!) and do an ABR

(last hearing test showed a high frequency hearing loss that wasn't

there a few months earlier.)

It's been interesting reading about families with more than one child

affected. My 6 year old has asperger's and severe tourette's, as

well as celiac disease. His gross and fine motor skills have

plateaued at the 2-3 year old level, though his cognitive skills are

advanced. (nonverbal skills, that is). His speech is very disfluent

and it seems to fluctuate. BTW, I also have a 5 year old who is

healthy and typical.

The postings about teeth really caught my attention. only

has 6 teeth so far, and they look like they don't have enamel. She's

seeing a pedi dentist in 2 weeks, and boy was it hard to find one who

would take with all her issues!

I was also wondering if there were any other families from Western

Mass on the list? Some folks recently started a support group for

mito families that meets monthly. I could give you the contact phone

number if anyone's interested.

Thanks

Heidi, Mom to , 18 months, dystonia, dysautonomia, ?mito,

gtube, RTA, seizures, etc.