Annie has suffered from varying degrees of gastroparesis for four years. We have had countless discussions with doctors and dieticians about how to cram enough food into her gut and get it to go through without coming back out--ad nauseum. Now, the strep/flu bug that got her admitted to the hospital two weeks ago has brought up this whole delayed gastric emptying problem again, front and center. The flu seems to have stopped whatever motility she DID have...and now, nothing is going down. Last night she threw up again. So, for the four times we've tried to advance her feeds, she has thrown up.
Now, for those of you not familiar with gastroparesis, it's a common problem for kids with neurological disorders. Some really smart people think that it's a vagal nerve problem that causes it--the vagus nerve doesn't work to move stuff down and out of the gut. Sounds reasonable.
What this means for Annie, is that she doesn't move food down and out. Rather, what happens is that I put the food down and she moves it up and out. She doesn't have the motility or the capacity for the amount of food she needs. It does not move DOWN and out. It moves UP and out. The result is that she has been chronically undernourished for four years. She hasn't gained any weight since September of 2007.
This was borne out in the xray taken this past week, to see if she had pneumonia. Her lungs were clear, (praise God), but the xray showed two compressed vertebrae, most likely a result of chronic undernutrition. Her bones are brittle. She doesn't get enough to eat.
Now, what makes this more complicated is there is no cure for gastroparesis. There are only things you can try to see if they work. G-tubes. GJ-tubes. TPN. Motility drugs--all of which have significant side effects, such as tardive dyskinesia or cardiac arrest. Starving also has significant side effects such as death.
So here we are between a rock and a hard place.
For you researchers, here's an interesting article called "The Riddle, Mystery, and Enigma of Gastroparesis." It's written in the context of cancer, but the possible treatments are all things on the table for Annie.
For you pray-ers, please keep Annie at the top of your list.
Jean
6 comments:
She's No. 1; the rest of the family is on the list, too. Praying for God's grace this week.
Aunt, Sister, Sister-in-law,
Marilyn
suadebu????
This was very enlightening. My oldest has a form of gastroparesis & the endoscopy found, basically, that she had been vomiting constantly, etc., because the food was rotting in her stomach. Her system doesn't work to move it thru. All the foods she had loved, salads, broccoli, etc., are a no-no. Often, she is just sick, sick, sick with no real solution other than to not eat. She lost WAY too much weight last year & has not been able to put back all that she lost, but she constantly tries to adapt her diet for the gastroparesis. We were told, upon diagnosis, that it was often linked to neurologic disorders, but no real answers were found. I am so sorry that your daughter has such an extreme case that is causing severe malnutrition, I know it has to be one of the worst things to endure. Annie is definitely on my prayer list, as are you as a mother leaning fully on God.
Lana C.
www.findinglana.blogspot.com
I ache as I read this. And then I remember that God aches, too. And I stand firm, as I only Am able-- w/Him holding me up. Praying that He'd be the lifter of your head, & that He would heal "our" girl.
Oh, that my words were written!
Oh, that they were inscribed in a book!
That they were engraved on a rock
With an iron pen and lead, forever!
For I know that my Redeemer lives,
And He shall stand at last on the earth;
And after my skin is destroyed, this I know,
That in my flesh I shall see God,
Whom I shall see for myself,
And my eyes shall behold, and not another.
How my heart yearns within me!
Job 19:23-27
Oh Jean-
This sort of confirmation of what you already know is never good news. Praying for all of you, but especially for Annie to get the nutrition she needs.
Jean, How are her Free T3 and Free T4? Are they in the upper half to upper third of the lab range?
Thyroid problems, parathyroid, pernicious anemia, B-12 deficiency, iron deficiency anemia and other autoimmune stuff all has a higher likelihood of being co-morbid with Addison's. From my experience, thyroid is usually the most prevalent.
Sending positive energy your way!!!!
:) Dusty
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