My FructMal Girl

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Showing posts from July, 2011

Multivitamin for FructMal kids

Miss J found a multivitamin that is suitable for FructMal kids: Gummy Power Sours - Multivitamin & Multimineral with extra Vit C . We ordered them online and Tootsie LOVES them. They aren't too sour and they come in tasty fruit flavors (pineapple, strawberry, raspberry, and lemon). Tootsie also takes (2) Omega 3, 6, 9 soft gels daily by Animal Parade . These also taste great and don't have a strong fish after taste.

Met with the Dietician

We met with Miss J (dietician) today. We discussed the low FODMAP diet (Fermentable Oligo-, Di- and Mono-Saccharides and Polyols) and how to introduce foods in a systematic way so we can observe symptoms. We know that Tootsie can tolerate lactose - she tested negative to a lactose breath test and has no physical symptoms to dairy (thank goodness!). We know she is very sensitive to fructose, but what we need to find out is if she can tolerate fructans (wheat, garlic, onions, zucchini, asparagus, artichoke, ect) and galactans (canned beans, green beans, soy, tofu, cabbage, etc). Over the next month we will be keeping a log of what she eats and also keeping track of any GI or mood changes. The first week will be a usual week, the 2nd & 3rd weeks will be an elimination diet - which is strictly FODMAP free, and the 4th week will be introducing fructans back in...then galactans. Miss J wants her to cut out all sorbitol and all other sugar alcohols (polyols) from her diet. They i

Finished Antibiotic - Now onto Probiotic

Tootsie finished up her 7 day course of Xifaxan and is now on day 5 of a 2 week course of probiotics ( BioGaia straws ). She did pretty well on the antibiotics. She did experience bacteria die-off symptoms. She complained of a headache for a few days and had 2 days of what I call an "off" mood. Those two nights she also had a night terror. She doesn't wake up when she has them. She just screams loudly and thrashes around in her bed. We started noticing the die-off symptoms on days 6, 7 & 8. Dr. D (naturopath) recommended increasing her vitamin C to 250mg/day and increasing her water intake to keep her system flushed. She has been doing great the past few days so I think we have gotten beyond it! We meet with the dietician on Monday - she will also be starting a new supplement on Monday, called Intestinal Repair Complex .

Xifaxan 200mg Twice Daily

Dr. L's nurse called first thing this morning to say the Xifaxan had been called in. They are such a great group of people at that clinic! So pleasant to speak with over the phone and so patient with my many questions. I phoned our local drug store to see when the prescription would be ready. They said they didn't have any in stock and would have to order some. I asked if it was okay if I called around to see if I could locate some at another pharmacy and they said that would be great. The 5th pharmacy (30 miles away) happened to have the pediatric dose on hand! Woohoo! Dr. L told me this medication wasn't prescribed as often because it is spendy and often not covered by insurance. I was prepared to pay a few hundred dollars and was pleasantly surprised when they said, "That will be $35 please." Thank goodness for good insurance! I was surprised, however, to learn that this medication only comes in pill form! Eek! Tootsie had never swallowed a pill

Intestinal Yeast Overgrowth

I began researching Yeast Overgrowth in Children and I couldn't believe what I found! My little girl had almost every sign and symptom of it! I jumped on the phone and called our new GI specialist. It was a Friday afternoon (naturally), but I was able to get through to a nurse. I told her I thought my daughter had thrush. She said she would run it by the doctor and she would call me back. She called back an hour later saying it was a side effect of the medication and they could change the prescription if I wanted. Tootsie only had a few days left of her current medication so I told them we would just finish it out. Not satisfied with the answer I got, or the fact that I didn't express my concern properly, I decided to take little Toots to the Walk-in clinic. We lucked out and met with a very understanding doctor. She agreed that Tootsie could be suffering from Yeast Overgrowth. She prescribed Oral Nystatin - 5ML, 4x/day. It took a week or so to begin to see improv

A Mom on a Mission

Tootsie doesn't have a food "allergy", but I found this video to be very informative and may be of interest to those suffering from food allergies.

Proper Testing for Fructose Malabsorption

Technically, Tootsie didn't test positive for Fructose Malabsorption until yesterday - although we were quite certain she had it based on her symptoms . We attempted the Fructose Tolerance test back in May 2010, but the test wasn't done properly at the leading Children's Hospital in our state. She wasn't instructed to follow a strict fasting diet the day prior to the test and the lab tech stopped the test 3o minutes in, saying she was positive for FructMal because her first reading was over 20ppm. We met with their dietician a couple weeks later who handed us a printout with foods to avoid. She had no knowledge on FructMal and the information given was something I could have printed from the internet. The entire appointment was about 15 minutes. We left there feeling even more confused and upset than when we started. We then made an appointment to meet with their gastroenterologist. We had to wait 2 months to get in! We were so anxious to meet with a "speci

Fructose Tolerance/ Breath Hydrogen Test Results

I just talked with the nurse and Tootsie's breath hydrogen numbers are: 41 92 146 78 38 These numbers should not be above 20! There should be 7 numbers in total, but the nurse stopped at 5 and said, "As you can see these numbers are well above the threshold." The test shows she has a bacterial overgrowth in her small intestine and it also shows she is malabsorbing fructose (which we knew). We will start Xifaxin next week, followed by a probiotic for 2 weeks. We have an appointment with a dietician who will go over the FODMAP diet with us later in the month. **Done properly, the Fructose Tolerance Hydrogen Breath Test should be 2-1/2 hours long. Breath samples are taken at 15 minute intervals for the first hour, then every 1/2 hour for the duration of the test. A spike in numbers in the beginning of the test shows a Bacterial Overgrowth. A spike in numbers in the later half of the test shows Fructose Malabsorption. If your lab tech stops the test at 30 minutes -

Welcome to our blog...

I was starting to overwhelm my Facebook page with updates on my little one so I decided to created this blog! My little girl is 5-1/2 years old and was diagnosed with Fructose Malabsorption 1 year ago. Since then she has been treated for SIBO (small bowel bacterial overgrowth) and for intestinal yeast overgrowth. She completed a hydrogen breath test yesterday which showed she was strongly positive for SIBO again. Her last bout was 8 months ago. Join me as we travel along this journey...