Stomach Pain

Birdie has been struggling for months.

Her stomach started hurting January 5th and hasn't let up yet.  Some moments have been awful.  Some have been hopeful.  At this point - it's just been long.  And frustrating.  Can you imagine how frustrating it is when your child is balled up in pain and the best thing you can do for her is sit beside her and hold her hand?

Let me be clear - that pretty much stinks as a health care plan.

I have learned more about the digestive track and heard how much is unknown about the digestive track than I ever thought I would.  And I'm also really sure I've barely cracked the book on this learning curve. Birdie is in that lucky group that all her tests come back normal. Except for a low white blood count (that no on ever worries about) and a major weight loss for someone so slim to begin with. Birdie's GI specialist at Children's has told us many times that 90% of stomach pain is never diagnosed. As in they don't know exactly why a stomach hurts so bad.  They just know it hurts.  The good news is they believe you that it hurts.  So they give you an acid reducer, Myralax, tell you to get up at a normal time, exercise, do fun things, go to school.

Ummm, did anyone listen to how bad this is?

She has pain 10 minutes after eating.  You can see her double over in pain as the food gets to her stomach. She is pale and listless - whether from the ongoing pain or what. She isn't herself. Her brothers keep asking me if I've noticed how pale she looks - like I could miss it. Mornings are awful.  She wakes in pain. It takes a while for that to ease. Nights from half and hour to an hour after dinner are awful. She wakes several times a night in pain. All that pain causes her to avoid eating, which leads to the weight loss. The doctor says she's constipated.  She goes everyday, but he always feels poop in her colon. When you have trouble eating and getting food in, it really messes up poop coming out. Her endoscopy showed beautiful tissue, but also found food in her stomach and small intestine.  She had eaten over 12 hours before. That led to an initial diagnosis of gastroparesis. The thought at that time in February was that it was caused by a virus and would eventually heal (although I kept reminding everyone that she was on a high dose antibiotic when this started). At that time she was starting to improve a small amount.

Further testing a few weeks later showed a perfect gallbladder on ultrasound and good motility with a barium x-ray series. Liquid flowed through the stomach and small intestine quickly and did not show any Chrons. Yet why all the pain??? At that point the doctor spoke of putting a feeding tube down Birdie's nose if she didn't start gaining weight.

Birdie currently has four medicines in her arsenal.  I must give them some credit. Periactin has been the life saver.  It has increased her hunger - imperative for her to regain the weight she loss. It helps block pain receptors between the gut and brain. This further enables her to eat.  It also makes her sleepy.  What a gift it is for her to sleep through the night without waking from pain.  Doesn't always work, but this is a great pill in my book.

However, even with these medicines, she still has daily constant pain and episodes of severe pain.  She can't even think about making it through a school day.  She's on homebound instruction and sometimes barely makes it through one of those sessions.  At this point her eighth grade year is slipping by as she tries to sleep through it.  She really wants to be back at school with friends again.  She wants to feel like talking to other kids and that she has the energy to walk from class to class.

Yet we're not getting there this way.

So I finally went to plan B.  Or maybe I should just call it step 2, because I think the solution to her problems will be a combined effort.

I called a holistic nutritionist.

And that is several posts in itself.