Wednesday, October 3, 2012

Summer in Fall

In Arizona it’s hard to believe Fall has started. Temperatures still top the high 90’s, and sometimes 100’s. Fortunately, the evenings and mornings are cooler. Aidyn has done very well keeping hydrated during the summer. I think what has been helpful is that I have weaned Aidyn off the antibiotics for bacterial overgrowth. It always gave him runny/watery stools the first half of the week long antibiotic cycle. This is how I weaned him: In June, I started to space out the antibiotics by adding a week to the time Aidyn had off of Flagyl (initially only one week). By August he was able to go three weeks off the Flagyl. He’s currently on his fourth week off. 

First ice cream!
Two weeks ago I started adding ¼ teaspoon of baking soda to every 20 oz of water Aidyn drinks. Any extra gas build up he usually got seemed to disappear. Aidyn now consistently has soft-formed stools. They are smelly, but without tons of gas and liquid. I find if I give a drop of oil of oregano for a couple days, it will kill the bacteria that the probiotics missed and the smell will lessen.

Big Boy bed!!
Aidyn received his first dose of B12 shots the beginning of September. He will continue to get them, with labs done every three months. His weight was checked and I was surprised Aidyn didn't gain weight. He has been hanging around 26 ½ lbs since the beginning of summer. I am hoping Aidyn will have gained some weight by Friday, the next GI appointment.
Much needed haircut done by Mama.
I have some exciting news! Aidyn has started Preschool! He goes half a day, four days a week. It has been over six weeks and it is going smoothly. He did catch a cold three weeks into school, but he recovered quickly. His speech has improved and it is probably the combination of Speech Therapy at school, his peers and just plain time. So far there have been no potty accidents at school. He has good control of his bowels and is pretty regular. Despite that, potty training is very slow. He just doesn't want to take the time to go to the bathroom. I am hoping by the time he is four he will be potty trained AND off the bottle. Drinking Elecare formula out of anything else just won’t do. I shouldn't complain because at least he will still drink it and he has no feeding tubes.

Ready for school.
Finger paint!
Recap on Aidyn: He has only 5 – 10% of his small intestines left, no ileocecal valve, no appendix and 50 – 75% of large intestines left as a result of NEC. He has been off TPN/Omegaven( IV nutrition) for 21 months and drinks Elecare for half his calories. He eats what he can tolerate which is most meats, gluten-free starches and is limited to carrots, apples, tomatoes, and strawberries for fruits/veggies. He is allergic to wheat, cow’s milk, beef and bananas. Each day he drinks about 24 oz of Elecare at 36 cal/oz and another 20 – 24 oz of water with electrolytes and sodium bicarbonate. Along with liquid vitamins, he takes 16000 units of Vitamin D3, 2800 mg of fish oil (when I remember), almost half a sachet of VSL#3, and Ursodiol every day. I give oil of oregano as needed. He recently weaned off Flagyl. He has 2 -3 bowel movements a day, soft formed. That’s it!

I always pray for the miracle that he wakes up one day with everything intact inside. That’s the kind of faith I have and it has gotten me through it all.


  1. Hi I'd like to ask you about the oregano oil. I decided to start using it for my son who has sbs and I'd like to know how much of oregano oil do you give to you son, and how do you give to him by mouth or gtube? how many times a day and a week? Thank you.


    1. Hi Jacky, I use Oreganol (Oil of Oregano) by North American Herb Spice. It is very concentrated. I only use literally one drop a day for a few days when he seems to be showing signs of bacterial overgrowth. I was able to wean him off antibiotics for the overgrowth, but will use the antibiotics if I forget to use the oil of oregano at the first signs of overgrowth symptoms. I also use VSL#3 probiotics (sachet) twice a day. If your son has a g-tube, I would give it that way with a water. Aidyn doesn't have any tubes, so unfortunately for him all meds and yucky tasting alternatives have to be taken by mouth. He is a good sport and is understanding how helpful it is to him. He says the oregano is spicy (I dilute it in water, or it will burn) but he knows it helps. I hope this helps! :)

  2. Hi Liz,

    Thank you for sharing this us! Im sure this will help us to fight the bacteria overgrowth. Yes he still have a g-tube and we only use it when we give him some med. Thank you again.

    Jacky :)


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