general advice

[Guest guest]

Kayla is almost 8 mos. old and receiving generalized OT and PT for

developmental delays. I'm wondering if anyone has looked into SPECIFIC

THERAPIES for infants with PMG, besides the usual motor skills stuff. I

know so much of early development is motor-cognitive fused/interdependent at

this point, but I can't help but worry that her cognitive skills are not be

addressed independently (if they can be at this point), especially since so

many medical workers are not familiar with PMG and related syndromes. We

have tried Jin Shin, a healing art through touch, with minimal results (need

to continue this) and we are going to see an osteopath soon. Any luck with

alternative therapies or medicines for any of the kids? Also, we're trying

to determine if she's having seizures. She's already been treated for

infantile spasms w/ACTH. Now she's slowly blinking her eyes, rather than

the fast blink most people exhibit (several x/day). Also, she stares for

2-3 seconds as if daydreaming and responds when you call her name or wave a

hand across her field of vision, usually taking about 1 sec. to respond.

This happens roughly on average 1x/day. Also, she's having trouble w/sleep

at night- she seems really restless, wakes easily and constantly moves her

head from side to side when falling asleep, waking up, and sometimes during

sleep (looks like when some people have a bad dream and can't wake up). Her

last EEG in Dec. showed " abnormal EEG study due to low-voltage background

activity that is asymmetric. . . as well as epileptiform foci of cerebral

activity. . . " over several parts of the brain, although this was improved

from her first EEG in November. The neurologist talks through his nurse

practitioners and they suggest phenobarbitol w/o even observing Kayla- this

is the second time they've tried to prescribe it w/o actually examining her.

This does not sound right to me. I need to know exactly what kind of, if

any, seizures she's having. Does anyone know how I would go about getting

another EEG, this time monitored for an extended period of time and get

video telemetry for 24 hours? Our experience has been that the child needs

to be in a crisis situation before anyone will see her- has this happened to

other people? Just wondering if someone knows an effective route to use to

get her seen before it gets to the medical emergency point. The pediatric

neurology staff at UCSF is overwhelmed, as are most in the SF Bay area, so

that's why care is less than acceptable (if you ask me!). Of course if you

do an EEG for 30 minutes, chances are you may not see " electrographic

seizures " or " clinical spasms " . At any rate, the things I've described

happen too quickly and randomly throughout the day to videotape myself, so I

can't take them a videotape like I did with the infantile spasms. Any

suggestions? The last issue is insurance. Anyone have any

information/experience w/private insurance for your kids? We are on " no

share of cost " for Medical, but we won't continue to qualify for this much

longer because of income (I'm currently not working, but plan on going

back). Can our kids be insured w/diagnosed conditions or are they denied?

I'm going to post her EEG reports on the neuro web forum for Sci. Bill and

get his opinion. Your feedback is greatly appreciated.