Friday, March 2, 2012
The surgery took about 45 minutes. The dcotor came into the waiting room with pictures of Isabels intestines, esophagus and stomach which were pretty neat. She said that Isabel did clot but that she bled for longer than expected. Her esophagus is also very red and inflammed so she is putting her on Prevacid for awhile to help with that. They took 9 biopsies and some blood to send away for testing.
About a week later we got a call saying that the biopsies were negative for celiac but to wait for the blood results for a definite answer. This past week we got the call stating that one test came back negative but the genetic test came back positive. This means that she does not have celiac right now but she has the potential to get it in the future.
So, we are back at square one with the diarreah. We are trying a new probiotic for 2 weeks and if that doesn't work we are going to put her on Flagel which is an antibiotic that kills bacteria and parasites. Dr. Y thinks that maybe they missed something on the stool culteres since they have to be so fresh. I think she may be digging for an answer but at this point, Ill try anything!
Isabel has also starting potty training this week and is doing pretty good! She is having a hard time dealing with the diarreah so I'm hoping that once we can finally get that under control it will make it a lot easier on her.
Overall things are going great right now! I don't want to jinx myself but it's been almost 3 months since her last seizure! Her neurologist is even starting to wean her off some of her meds! She has gone this long before so, we'll see what suprises she has in store for us this month!
Wednesday, February 8, 2012
Although I've been through the anethesia route many times with Caden, it's harder to think of my baby girl going under although I'm sure she will be just fine. Please send some good thoughts our way!
Friday, January 27, 2012
Wednesday, January 4, 2012
We also went to see hematology due to her lack of clotting when she got her blood drawn and her easy bruising. After a long talk with the doctor and a few tubes or blood we found out that she has low Factor VI or Hemophilia C. It's definitely not a huge concern but something that we will need to follow up with in February when we see hemo again.
Isabel has also been waking up screaming occasionally and holding her head. The first few times I gave her some Motrin and brushed it off but after the fourth time I called Dr. F. He said that migraines go hand and hand with epilepsy so he put her a preventative migraine medicine. Since we started it, she has become a different child. No more waking at night, so much happier during the day and she is eating much better too! I feel so bad for brushing off her pain for so long.
Lastly, poor Izzy has been having diarrhea for over a month so we took her to the pediatrician. They gave us lots of cups to take home to fill with "samples" and took some blood to run some tests. A week and a half later when I received a call from the actual pediatrician I knew that the news wasn't good. She tested positive for celiac disease. I guess this also can go hand in hand with epilepsy. I was told not to change her diet until we see the GI doctor at the end of January. I will make them test her yet again because this is a major lifestyle change for my baby.
I just wish that she could catch a break. Through it all she is such a trooper...she always has a smile on her face. She is teaching me an invaluable lesson and I will never forget it, she truely is my hero.