An Annie Update

So it's no surprise to our regular blog readers that Annie is battling GI issues. For those who aren't familiar with our sweet Annie's battle I will give you a little background - without rewriting the whole story! Annie was born perfectly healthy and normal, she was such a quiet and tiny little girl that we literally had to set an alarm to wake up and feed her at night. She wasn't a big eater but would eat when she was hungry and tolerated her feeds well. At 9 months it was as if someone flipped a switch and Annie started screaming louder than we had ever heard before, she started refusing feeds and got to the point we wondered if she would dehydrate because she was taking in such little food (this we now know was rett syndrome taking over her little body). Since this time we have struggled with feeding Annie, keeping her weight up, keeping her digestion and absorption in check, reducing her reflux and battling gut pain. We've tried different diets, been through countless medications and tests. In April of 2008 Annie went in for surgery for her g-tube to help with her weight and to possibly allow for a way to relieve gas pressure from her stomach. This has been a blessing but not a "cure all". Annie continues to struggle with constant gut pain and lately that pain has increased. For the past 2 1/2 weeks Annie has been spending most all of her days moaning in pain. The pain increases when she eats (or when bolused) and she screams in pain for upwards of 2 hours 10 minutes after eating. We typically see this behavior for about 1 week every 4 to 6 weeks - the screaming lasts for about 4 to 8 hours a day every day for a week. There's no reason for it and then it subsides as mysteriously as it came one. We have never been able to figure out the actual source of the pain. The pain went on for over a week and got so bad that it was keeping her from doing her therapies and even tolerating being on her computer.

In the past we have had docs throw up their hands and say they were sorry but didn't know what the problem was or how to solve it. We've had others docs who have questioned if it was GI pain, still others who have said, maybe its neurological and she's not really in pain (ummm, no.). We remembered that our local GI had suggested a certain med and praying for a little relief for our sweet little girl we called to ask for it. Instead of prescribing it he ordered a new test. This one was suggested by the GI we saw in NY it was a gastric emptying test. Of course we took action. Honestly, not that we want our child to go through more testing, but it was a glimmer of hope that we might gain more insight into Annie's pain and actually find some treatment. We got the results today, the GI said I have good news and bad news, the good news is that Annie's test was perfectly normal, but that's also the bad news because I am out of ideas and don't know how to help your daughter. I really have great respect for this doctor. He listens to our concerns and really seems to love our little Annie (its hard not to love her). For him to say that he has tried everything, I believe him. I asked him about the neurontin and he said it's worth a shot but that a neurologist would be better equipped to follow her on the med. So now we are on a mission to get ahold of our neuro and get Annie started on this med in the hopes that it may allow her some relief and increase her quality of life.