AnonymousFYI, Quinn’s fever came back last night and her diarrhea started back up today.
Her GI appointment was today. It was a very productive visit. I was really impressed with him.
Quinn got her weight check… which was odd that they didn’t take off her clothes to weight her. She’s still 18 pounds. She hasn’t grown an inch since she was around 9 months. Quinn still measured at 29 inches. She is around the 17th percentile for weight and 25th for height… I do believe. The doctor said that for a full term baby, she is quite small.
The doctor asked why we were there and I told him to continue the care for her reflux and to ask him about her stomach issues and gastrointeritis. I didn’t want to make a long winded speech about her past because quite honestly, I really thought I’d be waisting my breath. So I gave him the basics and told him that she was hospitalized this past weekend because of severe dehydration. She was so dehydrated that all of her veins had collapsed and they had to put one in her head. I told him about her fevers. He immediately asked me how many bouts of gastrointeritis she had in the past year and how many bouts of diarrhea she had along with the high fevers. I told him that it’s definitely been more than I can count. She’s had two bouts just in the past month. He said that more than three bouts associated with a high fever is too much in one year’s time. Along with how often she is sick and how often she has a fever. He automatically asked for her records and began looking over them in the office.
It was the first time any doctor had ever looked over her records with me in the office. I was impressed.
Anyways. He asked me some questions and one of them was right on the money. He asked if she has a bloated stomach often. I said every single day, especially at night she has a bloated belly. Her belly doesn’t even match the rest of her body. Her legs are so skinny and her ribs are visible and you can see her backbone, yet her belly sticks out like a 9 month pregnant belly. And it gets hard. We told him about how she is uncomfortable for much of the day. How she won’t drink milk and how she’s been spitting out her food lately.
I don’t want to bore you with anymore details and so plain and simple the doctor thinks she is sick way too much. he is certain there is something going on. He said that kids that get gastrointeritis normally aren’t hospitalized and for it to get that severe is cause to look into it further. He said that the fact that she had a high white blood cell count means that there is something going on and he is suspecting one of four things may be going on.
A) She may have Celiac’s Disease. Something that many people have told me to look into for her. I’m hoping that this is what it is and if it is this, then all I need to do is cut out gluten from her diet. That’s not a big deal. I can handle that.
B) Cystic Fibrosis. I heard this is a bad disease and I’m going to have to do some research on this because I’m not so sure what this is.
C) An Immune Deficiency. He is leading more towards this one.
D) Damage to her intestinal lining. This can cause horrible stomach problems. I’m not so sure what the treatment plan for this one would be, so I’m going to have to do some research on this one too.
Our Plan: Today Quinn got her some blood work done. The blood work was done to check for celiac’s disease. I’m happy to say that she was well hydrated and her vein even gave some pressure. She filled those tubes up fast! Anyways… this is not a diagnostic procedure. It will just let him know what to look for. If the blood work comes back fairly normal, then he will send us to an immunologist to check for the immune deficiency.
On Monday, we have a sweat test scheduled… in Loma Linda again. Loma linda is almost two hours away from where I live so going out there becomes an all day thing for us. i’m not sure what they do for a sweat test but so far, i’m hearing that she isn’t going to like it that much. This will be her test for cystic fibrosis.
He said that whether or not these tests come back normal, he will probably want to scope her intestines one day anyways. So that will be to see if she has damage to her intestinal lining. And he told me that she needs to be off her nutramigen formula. He said to try pediasure. I don’t think she is going to drink this one either, but it’s worth a shot.
Also, her sleep study is scheduled for the 22nd in Loma Linda. We will be arriving about six hours earlier than our scheduled time to get the PH probe placed. Her GI doctor would like to do a 20 hour PH probe monitor at the time of her sleep study. So we have to call next week to set up a time for that.
Whew… lots of information. I really have to go and do some research now.
-Sarah
