Monday, December 29, 2014

Gastropharisis

What is Gastropharisis?

Liam's been diagnosed for since he was a few months old with Gastropharisis. Like with all things I normally re-research everything Liam's been diagnosed with to  see if any new info has popped up. Lately his Gastropharisis has been on my. It most likely stems from my frustration that Liam will only take a few bites of food at a time before being done. 

I got my info from the Mayo Clinic website during this search.

What is Gastropharisis? How does it affect you? 
It's not always clear why someone has Gastropharisis but in many it's believes to be caused when the vagus nerve is damaged. The vagus nerve controls the stomach muscles and helps manage the digestive tract. It' sends signals to your stomach telling it to contract to push food through. When the vagus nerve is damaged it can't send signals to the stomach. Damage can be caused by disease such as diabetes or abdominal surgery. 

What are the symptoms of Gastropharisis?
Vomiting 
Nausea 
Feeling full after just a few bites 
Abdominal bloating
Heartburn or GERD
Changes in blood sugar
Lack of appetite 
Weight loss and malnutrition

There is no cure for Gastropharisis. Changes to diet it meds can sometimes help. Gastropharisis can cause complications such as:
Bacterial growth in the stomach due to food sitting there. 
Food left in the stomach can harden causing a hard mass called a bezoar. These can be life threatening. 
Blood sugar fluctuations. Poor blood sugar makes Gastropharisis worse. 


In Liam's came his vagus nerve was damaged. The doctors aren't sure if it was due to his birth defect CDH or the repair surgery. They are however sure the nerve was damaged. Liam recently in the last 6 months was weined of his mobility med, erythromycin and takes his acid reflux (GERD) meds as needed. 

Liam will take only a few small bites of food at a time. Some days more than others. He has his ups and downs. He can be fine for a few days, weeks or months then get hit with severe vomiting symptoms and have to be taken to ER for fluids and IV zofran. He has random sparatic stomach due to his Gastropharisis. I'm still "new" to this so I'm unsure what the future holds as far as eating is concerned. I've had little contact with those who've had Gastropharisis for years and little idea on how if this only gets worse over time or if in some cases it does indeed get better. 

Considering there is no cure I am sure that Liam will not be miraculously cured of Gastropharisis anytime soon. The good news is that after changing his feeding tube from a Mickey to an AMT mini one ballon less his episodes of vomiting have been cut by 90%. 

I am reveling in the fact that this time last year we made the switch in tubes and it's made the world of a difference. He went 8 months with NO hospital stay! I tiredly believe it's because we switched tubes because it was an instant change in him. This time last year Liam started eating and showing interest in foods. It was a slow and steady start (although at the time it felt he was diving in head first and eating as if it was an everyday thing for him). That was my small miracle. 

People live with Gastropharisis everyday, some their entire lives with minimal flare ups and episodes. It's manageable. I may now know if or when Liam will decide to eat and ditch the feeding tube but I do know he can live a fairly normal life. And for a mom of a special needs child, fairly normal is perfect! ❤️❤️❤️

"I may have Gastropharisis but Gastropharisis does NOT have me"