The 3 Month Stretch
My daughter’s last infusion was three months ago. YES. Three months ago. How does a girl go from bi-weekly infusions to a 3 month stretch? You’ve missed a lot.
Before Mariah’s state pageant she had gotten quite sick and her Hematologist was becoming frustrated. If it was simply the Celiac Disease that was causing her iron deficiency anemia, her infusions should be holding her until her next visit. Not only was her hemoglobin continuously low, but she was having abdominal pain and other issues again as well.
I contacted her gastroenterologist and was met with some disturbing news.
“I’m sorry ma’am but the doctor is no longer in this office”
“You’re kidding me, right?”
“No ma’am. I’m afraid I’m not. You are welcome to see another doctor in this office if you’d like but our next new patient intake is 4 months out.”
“You’re kidding me, right?”
“No ma’am. I’m afraid I’m not. I can try to get your daughter in sooner under the circumstances but we would need something in writing from her gastro as to her condition and that might take a couple months since he moved to Alabama and would need to get settled.”
“You’re kidding me, right?”
“No ma’am. I’m afraid I’m not.”
CLICK. I hung up. I don’t have time for idiocy.
I called the center for Celiac Disease Research in the hopes of getting some advice. I was told that the doctor who had just bailed to Alabama was the only Celiac pediatric specialist in Vegas. Great. I could travel to other states to have her tested and treated, but even they would say that it is something more than Celiac Disease. I’ll do what I have to.
Another infusion came and I filled her hematologist in on the news. He says, “You’re kidding me, right?” (True Story) He said that before we jumped states looking for answers he had a friend who was a gastro and familiar with Celiac Disease. Lets see what he has to say. Having played the game of idiotic gastroenterologist before, I was reluctant but decided to give this guy a shot. I trusted the Hematologist. In our first visit he looked over all of her records and agreed that something was up.
“I don’t think the current anemia issue and abdominal pain is Celiac related at all,” he said. “Lets run some tests and figure this out.”
Genetic testing, blood work, endoscopy, colonoscopy, an Upper GI and some biopsies later, we found something.
Genetic testing also showed her positive for ulcerative colitis. Endoscopy and colonoscopy showed blood clots in her intestines. She had been having intermittent abdominal bleeds, which was probably partially to blame for her anemia. She was put on some medication for Crohn’s disease along with a few other things for thyroid, bone issues and vitamin deficiencies. Her Hemaglobin improved. It improved so much that it was the highest we’ve ever seen it.
These are possibly the largest pills I’ve ever seen and she takes 4 of these every day to treat Crohn’s Disease.
Her doctor said to wait three months to see how she does. Today is the day that we check. I know that she misses everyone at the infusion clinic and is excited to see them today but I’m hoping for normal labs. It would be nice to have a break from all the heartache.
Waiting in the office during her last visit.
Fingers crossed
Thanks
All went well!
I have a 41 year old daughter who has been through hell with her health – mental and physical … why do some kiddos seem to get it all? Wishing your wee one well …
Thank you
If nothing else, go doctor for listening to you and then doing the work to get a clearer idea of what’s going on!
Does this mean she has Celiacs and Crohns, or just Crohns?
And is the management of that easier?
As of right now, she’s been diagnosed with both. Each have their own complications and in her cade, can be life threatening if not monitored. One is treated with diet and the other with medication. There is a possibility that the Celiac disease was a misdiagnosis but there’s more testing to be done.
Mariah is so strong. I wanted to die over bronchitis! She is my hero!!
Mine too
I’m glad you got some answers!
Me too! Thanks Thoughtsy.
It’s always good to get some answers and it seems like the medication after helped her improve a bit. Hopefully, everything will be better from here. She deserves that and so do you!
The medication has definitely helped and although we know there are still bumpy roads to come, a major obstacle has been overcome
Don’t you just hate it when doctors suddenly disappear into the mist? I’m glad you were able to see someone else who seems to have come up with another piece of the puzzle. I hope the medication solves the stomach problems and anemia.