July 21st, 2013
We celebrated Nora’s 6th birthday at the end of April. It’s so hard to believe that my baby is already six years old! So much has happened in the last six years it leaves my mind spinning sometimes. There have been many hard times we’ve had to go through to get here but there have also been so many wonderful, amazing moments that outweigh all of the struggles. I find myself just staring at Nora sometimes with my heart smiling and just so very thankful for her sweet little life. Then I’m snapped out of my daydreaming when she says “Mom….why are you staring at me?!?”
Nora had been wanting a bouncy house for her birthday ever since she played in one last fall at the fair. So she got her birthday wish and she and her friends bounced away and had a great time.
There was one traditional staple of a birthday party missing, a birthday cake, but thankfully none of the kids missed it and her party was still just as complete of a celebration without the sugary carbs. Instead of a birthday cake she had birthday quiche because Nora has been struggling with d-lactic acidosis since the beginning of the year.
D-lactic acidosis is a type of intestinal bacterial overgrowth that causes some really horrible and scary symptoms. It occurs with short bowel syndrome when the small intestine cannot metabolize carbohydrates properly. The carbohydrates ferment in the intestines leaving an ideal habitat for bacteria to thrive on. The bacteria produce d-lactic acid (very different from l-lactic acid) that builds up in the body causing metabolic acidosis which can lead to neurological symptoms like slurred speech, dizziness, imbalance and lack of coordination, and when things get really bad the person can become unwakable and in a coma-like state. Unfortunately Nora had all of these symptoms and had to be hospitalized three times in six weeks earlier this spring after becoming unwakable and non-responsive. It was incredibly scary to say the least.
We never imagined that we would miss her port so much but we sure did during those hospital stays with all of the blood draws and IV’s that she needed. Nora was used to her port needle because it was all she had ever known and as long as the huber needle hit the port in the right spot there was just one poke and that was it. But venous sticks were totally new to her and her tiny veins are a hard stick and sadly to say there were too many times that she had to be stuck numerous times to get a good vein. Nora went through a period of being very stressed and anxious surrounding all of it. Thankfully she is used to it now and is coping with it much better, especially since she is still needing to have her labs checked every week or two.
D-lactic acidosis is a more rare type of short bowel bacterial overgrowth and surprisingly very unknown about in the medical community. It is often misdiagnosed and the problem can go on for a long time before getting it figured out. Thankfully we had read about it before on other short bowel blogs and after Nora’s first hospitalization and misdiagnosis of dehydration, we insisted a test be run for d-lactic acidosis. We requested this the first time but the hospital only ran a lactic acid test and that is not the same thing.
Nora is doing much better now but she is still struggling to kick it completely and has taken three rounds of antibiotics. In the past when Nora has had other types of overgrowth we had been able to avoid antibiotics and treat it with probiotics. But d-lactate actually can get worse with the more common strains of probiotics. Among a lot of other modifications to her diet, we have greatly reduced the amount of carbs she eats and changed her formula from Elecare to a lower carb formula. All of these changes are necessary to get the overgrowth under control but it also results in Nora getting less absorbable calories and nutrients. The bacteria inhibit her intestines from properly absorbing nutrients and since her intestines don’t properly absorb even when they are healthy, she has lost weight and goes through spells of having very low energy. She is already a small little peanut and was struggling to gain weight before all of this started so hopefully we will see some weight start coming back on her soon.
It’s terrible I’ve let Nora’s blog go for so long without a post! There has been so much more that’s happened in the last 9 months since the last update. I’ll try my best to make another post soon to fill in the blanks. We had to turn off the ability to leave comments on the blog because of obnoxious spammers constantly trying to promote their products on Nora’s blog. So for those of you who are still following our sweet little Nora or to those of you who may have just found her blog, thank you for checking in on her!