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Just an update…

November 19, 2010


Really not much has changed since I last posted.  Lucy continues to have all of the same symptoms, her temps have managed to stay below 10o which indicates to us that these temps are related to her autonomic dysfunction, her body’s inability to regulate processes that the body does automatically.  We aren’t surprised to see her responding this way, her body is really trying hard to adjust to all that it has going on.  Her resting heart rate remains high, in the 160’s, which we know is wearing her out.  We are seriously looking into finding some meds to control and manage her pain better.  Lucy’s body does not metabolize meds normally which makes finding a med that works difficult, currently we are using Tylenol with Codeine because…its working.  We met with Dr. R on Monday after e-mailing and talking on the phone a lot over the weekend.  It was an appointment in which we discussed how “sick” our little girl is and how we want to give her “quality of life” at the same time do all that we can.  I think that for anyone who has not walked in our shoes an appointment like the one we had on Monday would have been awful, oddly for Drew and I it gave us a sense of peace.


We are so very grateful for each and every thought and prayer being said for our little one and our family.  We are in awe of the impact that our little one has had one our lives and the lives of so many others.  When I fist laid eyes on Lucy  I stated “ this baby was born for a purpose!”, little did I know!

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Heidi said...

(((HUGS))) Not a conversation any parent should ever have to have. Sorry she is still struggling, poor baby. AND I agree, she is so beautiful in every way, her smile is contagious. Love all the photos, really showing off her perfectly silly personality! Praying she kicks this crap soon and returns to a good baseline. HUGS and always prayers for your darling and precious baby girl. Deep breaths, one day at a time. Thinking of you tonight-
Heidi & Jack.

Jessica said...

I'm sad to hear that Lucy is still struggling so much. What pain meds have you tried? We have run the gamut. Some good options to try (if you haven't already) are neurontin, lyrica, and amitriptyline, prozac and a few other antidepressants.

These are all meds with pretty good pain control for a lot of people. One downside is they all have to be given enterally, and don't come in patch or IV form (so if your kiddo isn't absorbing meds through the GI tract they won't work).

Clonidine is a med that comes in a patch, that can provide both pain relief, anti-anxiety, and some autonomic control. It must be used very carefully as it is an anti-hypertension med that will lower blood pressures. If your kiddo happens to run high in the BP dept (like mine), it's an all-around great med that skips the crummy tummy. :O)
The narcotic Fentanyl also comes in patch form, but the dose is rather high, AND narcotics make intestinal motility much worse, so are usually only used when you've given up on re-starting feeds.

IV meds (for when all others fail) are
Keppra (anti seizure med with some anti-neuropathic properties), and of course Methadone- another narcotic.

In the anti-nausea dept there are Zofran, Kytril (a cousin of Zofran), phenergan, compazine, benedryl, and atarax. Most of these come in both enteral and IV forms.

Some of the anti-psychotics and seizure meds can be very helpful if the cause of the pain is autonomic- we use low doses of haldol, and kids who can have benzodiazepines (unlike mine) have great success with valium, ativan, and klonopin.

Ok, hope that gives you some leads! We've had far too many of the "QOL" conversations, and they are hard. Hang in there!