Archive for the 'Nora Medical Updates' Category

Bacterial Overgrowth


September 8th, 2010

Nora had her endoscopy and colonoscopy last week and it was found that the culprit of her pain and bloody stools is bacterial overgrowth in her large intestine. Maybe I should rephrase that, the more specific cause of her severe symptoms is the intestinal dilation and lack of motility which was caused by bacterial overgrowth. Bacterial overgrowth is usually referred to as SBBO for “small bowel bacterial overgrowth” because it is more commonly a problem in the small intestine but it does occur in the colon and that is where Nora’s is. This is new news to us so we are still learning.

Bacterial overgrowth is a very common problem with SBS where the good bacteria in the intestine needed for healthy digestion are over taken by bad bacteria. The overgrowth causes fermentation of food in the bowels which leads to dilation from the fermentation process and the dilation leads to poor motility or “floppy colon” as Dr. Dimmitt referred to it. Then irritation and bleeding are caused by the poor motility and the bowels not being able to eliminate all of the fermenting stool.

Thankfully Nora’s small intestine looked really good and healthy with no overgrowth or dilation. We were so relieved to hear that because since her small intestine was the part that was resected her doctors were thinking that her problems were coming from the resection sites.

Although overgrowth is a common SBS problem we were a bit surprised by the diagnosis because Nora didn’t have any of the typical symptoms of overgrowth: diarrhea, vomiting, decreased appetite, excess gas. Maybe because her overgrowth is in the colon the symptoms differ(?).  Without these symptoms as a red flag, it appears that the overgrowth has been brewing for a while by the amount of dilation and irritation. :( I am feeling quite guilty for backing off on Nora’s pro-biotics in the last 6 months or so and can’t help but feel it contributed to the problem. Nora’s been on pro-biotics pretty much since the beginning but I started backing off and only was giving them to her every now and then because it seemed they were making her stools looser. Since I backed off the pro-biotics her stools thickened up and we thought she was doing great.

The typical treatment for overgrowth is antibiotics which wipes out all of the intestinal bacteria, the good and bad. Nora’s GI docs usually treat with anti-biotics first and then re-establish the good bacteria with pro-biotics. Since Nora has always gotten colitis from anti-biotics we’re trying a double dose of pro-biotics first and if that doesn’t take care of it then we will go the anti-biotics route. Diet is also a big part of getting overgrowth under control. The bad bacteria feed on sugars and starches so we will continue keeping Nora on an even more restricted diet than usual.

After feeling pretty puny for a couple of days after her procedures, thankfully Nora now seems to be feeling much better even than before her procedure. Even though the clean out was unpleasant and hard on Nora, it seems having her system completely cleaned out was a really good thing for her. Getting all of that festering, rotting stool out of there really did her some good. (sorry for the gross adjectives but it is what it is). Now hopefully we can just get the overgrowth under control before the poor motility allows it to build back up.


Pfffft to you bad bacterias!

Now for the good news….Nora’s small intestine has now grown to 25cm!!! She started off with only 4.5cm, it had grown to 16cm last spring and now she’s at 25cm – aww yeah baby! :)

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Ready for Answers


August 25th, 2010

We thought that Nora would be having her endoscopy this week but it was rescheduled at the last minute so she will be having it done the first of next week.  Since there are no pediatric GI’s in our area we will be taking her to Birmingham where her GI’s are to have the procedure. Most of the time an endoscopy is done as out patient but since we will be so far from home they will admit her the day before to clean out her bowels for pre-op. We’re really hoping this part wont be as bad as we are anticipating. To keep her mind occupied from being hungry since she wont be able to eat, we have lots of goodies and surprises packed for the hospital stay. As long as they don’t find anything too serious we should be headed back home the following day.

Thankfully she is still doing ok and her symptoms are minimal but they are still there. She has been on a very bland diet for over a week which we’re thinking is helping  to not irritate whatever is going on. Nora’s abdominal xray didn’t show anything obviously concerning and her stool test came back negative for pathogens like samonella.

We have talked to Nora a lot lately about her special tummy and that we’ll be going to the doctor to have a special procedure done that will hopefully make her tummy feel better. She really likes the sound of the idea of her tummy aches going away. She was all ready to go on our trip to see the doctor and was a little disappointed when we told her we had to wait to go. The other day she had a tummy ache and after it went away she said “I feel better now, but I still need to go to the doctor”. I hope we didn’t hype it up too much because they may not be able to make her tummy aches go away but hopefully we will get some insight to answers that we are anxiously awaiting.

Nora is still her sweet, happy self and having lots of fun. Especially with her best buddy Maya.

Introducing Nora the monkey fairy princess! :)


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Worried


August 17th, 2010

Nora has been having a rough time lately. We need to figure out what’s going on and get our sweet girl feeling better. Over the past few weeks her BM related tummy pains have been getting worse. Then last week they seemed to worsen to a whole other level and we started seeing blood in her stools. We did a random spot check of her stools, including ones that didn’t have blood seen by the naked eye, and 5 out of the 6 samples tested positive for blood. After learning this it makes us wonder if she has been having blood in her stools for sometime and we just didn’t know it.

When she’s not having a tummy ache, for the most part she’s her usual self but overall her energy level is decreased and she is obviously just not feeling well. Blood in stool can be a sign of many different things and when SBS is part of the equation the list of possibilities grows. We’re waiting on the results of her stool cultures, she had a regular abdominal x-ray this morning (to check for something obvious like dilation or an obstruction) and she will be getting and upper and lower endoscopy soon. We should get the reading from the x-ray tomorrow and we are really hoping that the endoscopy will find something that isn’t too serious and can be easily treated.

Thankfully Nora has been feeling a good bit better for the last few days with less pain and not as much visible blood in her stool. She’s still not 100% but it’s good to see her not quite as puny and in so much pain.  I’ll post more once we get some of the test results back.

And leave you with pictures of our cutie in pigtails now that her hair is finally long enough for them. :)

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“I love my new friends!”


July 21st, 2010

That’s what Nora has been saying a lot recently since she’s been having so much fun playing with her pals Maya and Rachel. Nora has been making up for lost time socializing and is loving every minute of it. Between frequent playdates with her new best buds, attending her first birthday party for another child and meeting a new friend this weekend she’s keeping her calendar full of fun. :)

For Nora’s cousins Lucas and Olivia’s birthday party, we brought Nora-safe equivalents to the cupcakes and ice cream they were serving. And Nora’s mango coconut milk ice cream on a gluten free cone turned out to be quite the hit! Mama Tom was excited that she now has a yummy ice cream she can eat with her diverticulitis and the kids just thought it was plain ol’ yummy. Nora had a great time and so did we. It was perfect that Nora’s first attendance at a kid’s bday party besides her own was at her great-grandmother’s house.

The birthday boy called Nora over to him and said he needed to “tell Nora’s something”. He made her wait for it and she was listening very intently for something important.


Nora started to get suspicious…..look at this face….she’s starting to catch on…..what’s this boy going to say..


In typical Lucas fashion he delivered a very important funny face message, I think it was worth the wait. :)

This weekend Nora and I met up with my friend Susan and her nephew at the museum of arts and science. It’s a great hands on place for kids to learn and play. (germaphobe alert)



John Corbin is about 6 months older than Nora, they got along good and made very sweet playmates. :)


Nora had a great time at the museum and I had a great time watching her be just one of the kids. But it was definitely a good dose of exposure therapy for me. It was by far the most germ friendly environment Nora had ever been in before, so many kids, so many touchable surfaces. I tried not to be too crazed wiping Nora’s hands down but she kept rubbing her nose all the while having a wonderful time playing with all of the toys. Then in typical 3 year old fashion Nora licks one of the play plastic foods just as I’m telling Susan how I’m seeing things through my germ goggles. (ahh!) Oh well, she had a great time and this experience was long overdue and she deserved the pure joy of it. (and hopefully she escaped cootie free)

(for those of you who’s eye caught the little girl with the backpack and were wondering, it’s just a backpack. in our experience seeing such a little girl with such a big backpack usually means there’s pump in it but not this time, I was nosey and investigated)

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An unhappy liver


July 9th, 2010

I think I mentioned in a previous post that Nora’s liver enzymes had been a bit elevated since the beginning of the year. We changed a few things and had hoped they would return to normal but the opposite has happened and now her AST and ALT are more elevated than they have been in a very long time. There are numerous things that can aggravate the liver but in Nora’s case the obvious reason would be long term TPN use even though she’s also on Omegaven. Maybe I’m just being stubborn but I just can’t help but feel there’s another piece to the puzzle, just because she’s on such a low dose of TPN at this point. But even on a low dose, TPN does have an accumulative effect.

What makes this elevation even more puzzling is that Nora’s Omegaven dose was increased a couple of months ago, so in theory, more Omegaven should have helped these numbers drop. But with Nora’s fat malabsorption challenges maybe the increase was too much for her liver to handle. Although the Omegaven is going straight into her blood stream and not through the intestines, could these elevations be due to a fatty liver? Who knows, I feel like I’m talking/thinking in circles. I’ll I know is that I do not like seeing these numbers continue to rise.

But ultimately this just reconfirms the need for us to try getting Nora off TPN all together again soon. At Nora’s last GI appointment the plan was to try a TPN break in the fall hoping that by then her weight will have picked back up again. Which it’s finally starting to slowly pick back up. :)

We took Nora to see Dr. Min Tian, our accupuncturist who practices traditional Chinese medicine, to get her opinion of what may be going on. Dr. Tian has played a big role in Nora’s care since the beginning and she has been a huge help with Nora’s diet. She provides a  good balance with her knowledge of the bodies’ natural rhythm and the the necessity of Nora’s extreme medical care. She thinks that there is too much fat build up in Nora’s liver, either from the higher Omegaven dose, from her diet, or both. So she recommended we do a natural liver flush with fresh melon juices. So we raided the health food store and bought every kind of organic melons they had and Nora gets to enjoy a fresh cup of juice twice a day.

Dr. Tian has proven to be right on the money in the past with her diagnosis before the medical testing results have come in. But regardless of the reason for Nora’s elevated liver numbers, we think she can benefit from a cleansing. I’ll be sure to share the outcome of the liver flush with fresh juices.

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A Butterfly Emerging


May 13th, 2010

For Nora’s birthday we got her a butterfly hatching kit. The baby caterpillars arrived the week before her birthday and they all cocooned on Nora’s birthday, what a great day to start their transformation. :) The butterflies emerged from their cocoons a week later and we let them free.

The whole process was really neat to watch and it couldn’t help but make me think of Nora’s journey. Our little butterfly is finally emerging too. We’ve kept her close and safe for three years and now it’s time to let her grow more freely. Our trip to Kentucky was really a big milestone in getting Nora out in the world. It gave us confidence that our little girl is now strong and healthy enough to handle bigger experiences and not get set back from it.

Nora is one happy, silly butterfly.

We are beach bound for the weekend to enjoy it while we can. With the uncertainty of what will happen to our beaches from the non-stop oil leak pouring out into the gulf it’s hard not to feel like the clock is ticking. We haven’t been to the beach since last summer and this will be only Nora’s second time to St. George so we are really looking forward to the weekend. :)

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Mother’s Day


May 9th, 2010

Candies, flowers and cards are nice

But the most treasured gift of all is the gift of your life

I will forever be thankful that you are here

I will forever honor being your mother, year after year

I love you Nora.

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