regression, autonomic symptoms

[Guest guest]

Hi All

has really been misbehaving lately. She had a UTI at the

beginning of Sept, became unresponsive, and is still not yet back to

baseline. She has responded somewhat to increased IV fluid and is

now getting close to 2 liters a day IV in TPN and additional

boluses. She is now awake but seems to have lost most of her play

skills, communication, and social awareness. Her right sided

weakness is more pronounced and she has more athetoid movements than

she used to. Her hands can't seem to pick anything up, and she's

even having a hard time getting her binky into her mouth. She had an

MRI today and the preliminary read is NORMAL. I'm thrilled that

there was no permanent damage but I'm afraid to get my hopes up that

everything will be fine. Darla, can you give me some pointers?

Autonomic symptoms have been completely out of control. She's

desatting at night and when she falls asleep and her head drops and

closes her airway. Low BP's have been setting off seizures.

Reflexes have been coming and going, and her level of consciousness

has been altered (unresponsive, then really lethargic without

protective reflexes like gag reflex, then really confused and

agitated, then awake but staring, then little glimmers of herself,

then back to staring, etc.) Blood sugars have been a bit wild. Gut

is alternating between complete shut down to dumping and pooping out

meds without absorbing them.

I've been in frequent contact with Dr. Korson and he raised Co Q10

and made changes to her TPN with the GI doc. Neuro has been

updated. It seems like everyone feels that this is the course of the

disease and we just have to ride it out. Does anyone else have any

suggestions?

It's heartbreaking seeing her so affected. She had age appropriate

skills (besides gross motor) 6 months ago and now she's doing very

little. How long has it taken other children to come back from a

crash like this?

Thanks

Heidi, 's Mom, 2 next week