Wednesday, July 27, 2011

Hope Rope

I am happy to see July near its end. This sticky, hot, crazy weather summer has made for too many bugs and much to much humdity.  Ava develops a goose-egg sized lump everywhere a mosquito gets her. And they love her. So we are trying to avoid those pesky fu*king things.

Aliza, however, is living it up.


Last Thursday was Ava’s last day of ESY/Transition time to her new grade school. We lost our lovely TVI and the district has yet to replace her. I am bummed, Marsha was great with Ava & her diagnosis plus this makes me pseudo-TVI until one is found. Yes, I CAN get sight words in Braille. No, I cannot give you adequate I-cane help.

The dynavox is going well for Ava, the iPad can be used for Yes/No choices until her own (larger screened dynavox with tactile grid) talk box gets here. We love the ipad but can’t currently provide Ava with the benefits of the larger dynavox screen size on it. We are also in the market for tactile dividers for proloquo2go on the iPad if you happen to be in the know.

We don't usually enjoy so much color in the evening, it's been a great sunset summer.
I continue the sensory diet, PT, OT, SLP, some cranial sacral work, naturopathic and traditional MD’s to try and figure out WTF is going on to cause all her discomfort. TCH neuro-metabolic team is also still involved in the diagnostic part but I really can’t get ‘treatment’ for Ava there; especially if she isn’t in a crisis. I have around $40,000 worth of ancillary care wrapped up in a 13 page report; lots of information but no suggestions on what to do with it. All professionals that review it inquire as to...’what were they going to do about_____?’

Good question. Complicated issue.

It has been suggested that I start ‘treating her epilepsy/ESES/CSWS’ in Chicago. Perhaps with this gentleman; this is all very new to me so check back if you are interested. There is also one other Neurologist in the U.S. that has been suggested, I think on the West Coast….

Before I pack up for Chicago we are finally checking into food allergies, a bit more serious than in the past. Tomorrow I will take her to a fasting blood draw, something is lingering with yeast and Dr. isn’t comfortable putting her on anti-fungal with AED drugs.

Here is a little recap of what is going on to date:

*She is on a Mito-Cocktail of CoQ10, Acetyl-L Carnentine and Omega-3’s

*Her methylation is broken (hence all the mecp2/ube3a/cdkl5 testing to date)

*In light of above information we will start Pyridoxal-5-Phosphate aka *P-5-P* tomorrow to help her broken methylation process (check here for details, B6 enzyme that doesn’t require the liver to activate)

*In 4-weeks we will add B-12

*Any allergies will be dealt with accordingly

*Neurology will continue to be discussed from a treatment rather than diagnosing plan, likely out of state Dr. to fill this gap

Am I on board? Yeah, I guess I finally am. A question posed today that helped, “Do you think it’s the neuro drugs causing all these issues, or something else?”

We’ve been on enough neuro-meds to know there are a few other components. I also have made it clear that I refuse to give up her benzodiazepines unless a better treatment is found and sustainable. Not that the other is but it has been one giant step forward.

I am at my wits end with being a consumer of medicine. Wouldn’t it be blissful if ALL laboratories were linked into a database so the same testing wasn’t done over, and over again? It would make my life much easier. I unfortunately cannot shit out an intelligent ‘past lab work up’ answer to save poor Ava’s arm.

Another blog.

Until then, with a bit of luck, no poor soul will end up choked by my rope of hope ;)

*Muah*

1 comment:

TherExtras said...

(People must be on vacation.)

Muah back!

I have nothing for making the medicine maze easier but your hard work doubtless gives ease to a few. Thank you.

Might be too soon to throw out this rope (of hope) but we now have a reason to travel to CO, maybe next summer.

Barbara