Thursday, January 27, 2011

Nutrition for Short Gut

We have struggled with Ellie's nutrition for a while and found that there were very few resources out there to help. It is a balancing act of getting her to eat and gettine her off of TPN,...good diet=less TPN.

We have a good nutritionist at Boston Children's but we only see her once every 2 months or if something is wrong. We have a great nutritionist through ThriveRx but what I have always wanted was a book or guide that we could keep on hand. Something that we can also share with our family and Ellie's nurse to help them understand the intricacies of Ellie's diet.

Finally we got what we needed. ThriveRx has created an online short bowel diet guide called Maximize Health. Each month they release a new topic, so far they have covered Diet overview, hydration, Carbohydrates and the next module is going to be on protein. The educational modules are available on line and then they host a webinar on the second Tuesday of each month led by the author of the modules. She gives a better explanation of the content of the modules and then at the end she answers any questions that you might have.

For us the Carbohydrate module was very informative as this is 80% of Ellie's diet. It changed the way we looked at her food and made us be much more aware of what she is eating. I am very excited about the module on protein since we know this is very important for Ellie but we are always struggling to get enough in to her.

The best part about this education program is that it is free to everyone. If you are interested just visit You have to register for the program, this will give you access to all the past modules, and recordings of past webinars and get you an invitation to upcoming webinars.

If you have questions about this email me at

They are also hosting a webinar next week on TPN stability called. TPN Compatibility and Stability: What’s the big deal? it s on February 4th @ 12:00 noon EST.
Presenter: Sheila Pedapati, Pharm.D.
She will talk about:
  • Verification of IV compounds and supplies
  • Patient counseling regarding medications, supplies, and pump use
  • TPN compounding and different types of pumps
  • Working closely with nurse liaisons to optimally manage patient care
IF you are interested in this one email:

Wednesday, January 12, 2011


Again we have let too much time pass between posts. Posting once in 6 months is not OK. Rather than try to catch up with a quick update. I am just going to do a review of the year.


We started the year with the huge bummer of Gus getting diagnosed with cancer. Then moved on to the excitement of Ellie’s first solid poops. In mid January we had a new refrigerator delivered and installed. The next morning we woke up to a flooded basement, and flood damaged kitchen. This led to a nice little kitchen and basement renovation that we have always wanted to do, Thanks Sears!!. During all this we also found out I was finally pregnant with baby number 2. I was rocked by ragging morning sickness, but I would have put up with anything, we were so excited to be pregnant again. I think this made loosing Gus in April a bit easier to deal with.

We struggled with hydration for Ellie through the end of the spring into the beginning of summer. We finally got things under control just in time for the Oley conference in NY. This kicked off a great summer with Ellie taking to swimming like a fish. We spent a week on the Cape with my family.

Ellie was on the beach and in the water everyday. We managed to get our routine for covering her dressing down so well that she went the whole week on the beach, and in the water, without her dressing ever getting wet. She had such a blast she has been talking about going back ever since.

The summer ended with Ellie starting school again. She started five days a week and we struggled all fall to keep her in all 5 days. She stays home if anyone in her class or the class next to hers has a stomach bug or if she is feeling punky. We work with her school to create a letter that goes out to all the parents explaining Ellie’s issues and why following the school’s sick policy is so important to her. This worked well last year and so far has worked well this year. The best part is it really helped other parents be able to us about Ellie.
We spent the fall apple picking, going to local farms, exploring Boston and enjoying the cooler weather.

I loved the last part of my pregnancy and loved making it all the way to my due date. My pregnancy with William was much easier and I felt much better thought out the whole thing. This just made us realize how sick Ellie was in utero and how much of a toll that took on me. William was a breeze in comparison.

At the center of the hedge Maze

William was born via C-section because I went into labor but never progressed. We called the ball a bit earlier with William than we did with Ellie and that made my recovery much faster with William.

Ellie was a giraffe for Halloween and managed to cover most of the neighborhood with her friends.

She doesn't like chocolate so that made the candy easier to deal with. And after the first few days she forgot that she had candy and that made it easier for Gib and I to finish it off.

I took the rest of the year off from work and enjoyed the rest of the fall and holiday season at home with my kids. I am still getting used to saying “kids”.

Through out the fall we struggled with Ellie’s short bowel bacterial overgrowth (SBBO) , so much so that the intervals between outbreaks got to be shorter than 1 week. We made our rounds through different drugs trying out Flagyl, Vanco and Cipro without really making any progress. We got to the point where we were giving her an extra 1000 mls of hydration fluids each day and still not keeping up with what she was loosing through her loose stools. This finally came to a head in December when we lost control of Ellie’s hydration and had to have her admitted to Children’s.

She spent 5 days in the hospital getting hydrated, doing bowel prep and getting a scope of her bowels to see if we could see anything that was wrong. We were also able to sample some of the fluids that they found in her bowels and culture it see what bacteria we were dealing with. They typed it out and then tested different antibiotics on it and found that Bactrum was the new antibiotic that we should try.

We did a week of Bactrum right before Christmas and it finally stopped the cycle of SBBO that we had been seeing. We also finally started probiotics (VSL3) after talking to another family that has been using them for years. Our team at Children’s was against this decision but they understood why we wanted to try them. And so far so good, it has been just under a month since we saw any signs of SBBO. (knock on wood now)

Christmas was great, we even got some snow to make it a true white Christmas.

We spent the week following Christmas and New Years in Maine with Gib’s family. We had a blast and Ellie loved seeing everyone up there.

So, now we have started the New Year. Things are good so far. In comparison to last year it has been an uneventful year so far. We did make the decision to take Ellie out of school for two days a week; we are hoping this will give her a chance to recover from her fall. William also started part time daycare last week. I think that was harder on me than it was on him.

All in all William has been so easy and laid back that if we could afford it I would be pregnant again. It has been great for Gib and I to have the chance to be typical parents. There is nothing like a very high maintenance baby to make a typical baby fell like a cake walk. Although we did have to remind our pediatrician to treat us like first time parents because we have no clue what to do with a baby that is under 8 months old and at home. All the typical kid stuff throws us for a loop. Things like… eating and pooping, those are things we didn’t have to deal with in Ellie’s first few months.

Today we are spending the day inside watching a true Nor’easter dump close to 2 feet of snow on our house. We have been out playing in it once already today and will head out again as soon as our mittens dry out. We promise to make more of an effort to keep this blog up to date this year. I know you have heard that before, but this time we really, really promise!