GI diagnosis'

From the minute Lily was born she has had trouble with feeding. Her GI issues are vast and complicated to say the least. I will start with her first actual diagnosis.

GERD: Gastero Esophogeal Reflux Disease aka Reflux. Lily was diagnosed with "an extremely severe case of Gerd at 3 months old. Basically everything that went into her stomach came right back up. I mean basically EVERYTHING! She was 6 lbs 8 oz at birth and by 4 months old she weighed barely 8 lbs. She had only grown 1 inch longer as well. I could see every bone in her frail little body. She was Diagnosed as Failure To Thrive (FTT). By the time they gave her her first feeding tube she couldn't lift her head, all facial expressions had gone away. She was almost lifeless.The doctors were worried about brain damage from malnutrition. She was starving to death and no matter how much i fed her it made no difference. She got her Ng tube when she was 4 months old. The feeding tube saved her life. I will go more into feeding tubes in a later post.

 Sandifer syndrome: In super rare cases of super severe GERD Sandifer Syndrome can occur. When she was 6 months old she was admitted to PCH for apneas(not breathing) and "seizure like activity". About 10 times a day Lily's right arm would start flailing uncontrollably, her tongue would start thrusting, her head would roll back, her back would arch over and over and her eyes would roll back in her head. And she would scream. After 2 brain MRI's, and 2 EEG's, a Cat scan, and an ultrasound of her brain through her fontanel. They ruled out seizures. So I started researching and found a YouTube video of a little boy with "confirmed sandifer syndrome" It was so similar to Lily. We went to a doctor who referred us to another doctor who referred us to another doctor who confirmed Sandifer Syndrome. Apparently when reflux is severe enough it affects the nerves that also control movement and causes spasms. It is controlled only when the reflux is controlled. So we just give her a cocktail of anti-reflux meds and it seems to work. So if I forget to give her her medicine Its OBVIOUS because she has "sandifer fits". Luckily this diagnosis doesn't cause any physical harm its just a bit embarrassing for her as she gets older.


Silent aspiration: This one is simple to explain but it scares me. Basically anything Lily swallows that is thinner than the thickness of Honey goes into her lungs. Water or food in lungs = BAD!  She can't drink water. Her formula must be thickened to a "Honey Thick consistency" with rice cereal. And she has to drink it all from a gerber med flow bottle nipple. I tried to drink honey-thick liquid through a med flow nipple and ITS HARD!. My cheeks were sore. Its no wonder she gets exhausted after just 4 oz. 

Dysphagia: Dysphagia is a weak or non existent swallow. Lily's is weak. When she was born it was non existent. It is treated with a feeding tube. A short documentary on You Tube explains it so much better than I can. Here's the link: http://www.youtube.com/watch?v=MrbEUDO6S5U&sns=fb
(copy and paste it into your browser)


Eosinophilic Gastroenteritis: An Eosinophil is a white blood cell. In EoE patients(that's the abbreviation for Eosinophilic disorders) eosinophils gather in large quantities in either the esophagus, stomach, or bowels. In Lily its the stomach and bowels. It causes inflammation and damage to the stomach and bowels. It causes severe pain, vomiting, and diarrhea. In severe cases it is treated with a feeding tube. EoE patients are on very restrictive diets. In Lily's case just Beech Nut rice cereal, And Neocate, with an occasional and very conditional bit of thickened sweet potato baby food. There is no known cure.

Laryngomalacia: basically the vocal chords are too soft an floppy. They also don't always move. There are times when they are barely moving and that is why she has stopped breathing so many times.If your vocal chords freeze up then air cannot get to the lungs. She was on an apnea monitor until she was 10 months old. She used to stop breathing and actually change color up to ten times a day. She had recently gone 4 months without an apnea until last week. :(   It also affects her speech. Some times she can say Mama and other times she can only mouth the words and no sound comes. We don't know how long this will affect her. It is quite possible she will go through life being able to speak some days and not on others. Only time will tell. There is a surgery that can fix it but its incredibly invasive and dangerous and she would have to have a trach for a while. We would really like to avoid that...


Allergies:Lily has many many allergies. Allergies go hand in hand with EoE and also because she is missing The IgM immunoglobulin. IgM is what deals with allergies and allergic reactions. We know she is allergic to many many foods, we just dont know how many or which ones yet because she is on such a limited diet and it is not safe for her to try foods because of her swallowing issues.  We do know she is allergic to milk and soy. She is allergic to most adhesives especially bandaids, and most medical tapes. We know she is NOT allergic to Beech Nut rice cereal and Sweet potatoes.  She has a bad reaction to any other brand of rice cereal like Gerber for example. Only time will tell what she can have and which allergies (if any) she will grow out of.

I think that about sums up her GI diagnosis'. Sorry this post was pretty bland. I wanted to get the technical descriptions outta the way. She has a few more non-GI diagnosis I will go into on another day.