Facebook Group

1/15/2012 - I started a new Facebook group specifically for Parents of FructMal kids. There are a couple of other groups out there that are really great for adults, but I have noticed there are more and more kiddos being diagnosed and it would be wonderful if we could have a place to talk openly about kid stuff. I just started the group tonight so it may take a little while to get things rolling, but I'd love for you to join & share your experience!

Parents of Celiac Kids

7/5/2012 - I started a new group on Facebook for Parents of Celiac Kids (USA). I would love for you to join me!

Friday, July 4, 2014

Happy 4th of July!

I just received a request for an update so here it is!  I am happy to report both kids are doing great!  No tummy complaints for a very long antibiotics for SIBO or antifungals for yeast.  Yay!!  Taking milk out of my daughter's diet made all the difference.  

We moved into our new house in March and the kids have been having a blast playing with their new neighbor friends.  It's so wonderful to see them enjoying life, looking healthy, and not dealing with tummy pain & reflux. Their diets are still very limited, but they know that's the way it has to be to continue feeling good.

We recently took at trip to Idaho, to Silverwood Theme Park, and had a super fun time.  We brought our niece along, which worked out great because she and our daughter love the same scary rides.  

We also spent a day at a play center where we played laser tag, go karts, mini golf, arcade games, bowling, bumper boats, and swam in an indoor water park.  We had a great time!

My girl is up there!

Sunday, May 25, 2014

Low FODMAP Banana Muffins

Banana Muffins (makes approx. 6 standard muffins)
3/4 C King Arthur GF Flour
1/2 tsp Baking Soda
1/2 tsp Baking Powder
1/4 tsp Salt
2 Bananas
1 Egg
1/3 cup Butter, melted
Preheat oven to 350ยบ F. Coat muffin pan with oil. Mix dry ingredients.
Combine bananas, egg, and melted butter. Fold in flour mixture and mix until smooth. Scoop into muffin pans.
Bake for 25-30 mins. (10-15 mins for mini muffins)

Monday, April 28, 2014

Tootsie turned 8!

Tootsie turned 8 in January.  She is doing really great!  She is 4 ft tall and is 47 lbs...and has long feel-good stretches.  We still have to treat SIBO about twice a year, but a five day course of Xifaxan is enough to take care of it.  We continue to follow a very low-fructose/low FODMAP diet and it works well for her.  She enjoys learning, crafting, sewing, and piano lessons.  She's pretty great if you ask me ;)

May is Celiac Awareness Month

I'm a few days early, but thought this was worth sharing.  If you, or someone you know, experience these signs and symptoms please get tested!  It's a simple blood test to start.  If the blood test is positive, then a biopsy of the small intestine is next to confirm the diagnosis.  Please don't hesitate!  And don't let your doctor tell you it's rare and you couldn't have it.  Listen to your body and demand testing.

Thursday, October 3, 2013

Stupid YEAST!

It has been nearly 5 months since my last post - yikes!  Well, we had an uneventful far as medical/health stuff goes.  The kids felt great!  We had to treat Tootsie for SIBO and yeast in June, at the end of the school year...and we are thinking it might be time to do it again.  She is starting to show symptoms of burping, gas, and mild constipation.  We are going to hold off on treating for now. We'll see if symptoms worsen over the next few weeks.

We did have an exciting Summer though!  We sold our house on 4 acres and bought a lot in a development on 2/3 of an acre.  We decided we didn't need the acreage.  The kids would much rather have neighborhood kids to play with, and we would like less to mow.    We are excited about starting fresh and making some changes to our kitchen layout!  So for now we are camped out in a rental, just a 1/2 mile from our building site.  It's great to be so close...we can pop over easily and check on the progress.

Taking a break.

Throwing sticks for the dog.

Wild monkeys in the backseat.
The new house so far.

Now back to the medical stuff...

Buddy had a rough start to the first two weeks of school and was only able to attend 2 days.  He was having free-floating anxiety, brain fog, inability to focus, depression, an itchy throat with a dry cough, an itchy bottom, tummy pain and weight loss.  I took him down to see his GI doctor to see if we could test for SIBO...I knew something was going on with his gut.  Either SIBO or yeast overgrowth.  GI didn't think the symptoms were related to SIBO and prescribed an anxiety medication.  He thought it was normal anxiety due to starting a new year of school.  I didn't agree, but went along with it.  I went ahead and filled the medication and gave it to Buddy the following morning.  It made him act silly and once we got to school, it did nothing for his anxiety and we had to come home.  So we discontinued the medication.  Our Naturopath had ordered a stool analysis kit back in May so we decided to go ahead and test him to see if it would show yeast.

In the meantime, we met with Buddy's therapist to see if she could help with coping skills to get through the anxiety.  She felt like we needed to get to the root of his digestive issues for her therapies to be helpful.  So while we were waiting for the stool test result to come in, we went ahead and treated for yeast overgrowth based on symptoms.  We used fluconazole (150mg, once a day for 7 days).  We got the results today which showed he did in fact have moderate levels of yeast in his stool.  His Naturopath made a diagnosis of leaky gut & brain.  She felt the toxins being thrown off by the yeast was crossing the blood-brain barrier and giving him the neurological symptoms (just like what happens to Tootsie).  After 3 days on fluconazole he was back to his confident, happy-go-lucky self.  He even ran for class representative and won!  Way to go, Buddy!  He has been going to school for the past 2 weeks now, with no episodes of anxiety and he's doing great in class.  We are so happy for him!

The new 4th grade class representative.

So our plan for now is to meet with the naturopath monthly and follow her advice on healing the gut. She sent us home with some new herbal meds and supplements to add to list.  #1. OrthoFlora to support a healthy balance of intestinal flora.  #2. GI Integrity - gives fuel for intestinal cells and connective tissue nutrients to help heal the leakiness.  #3.  Quercetin - a potent antioxidant.  He will continue to take Thorne Children's Basic Nutrients, Cod liver oil, Vitamin D, and Simalase digestive enzymes & Innate Response Flora 20-14 probiotics.   He also takes UNDA Numbered Compounds - a homepathic preparation.   Now how's that for a mouth full?!  Cheers to healing!

Off to school!

Thursday, May 16, 2013

On a Good Stretch

It's time for an update....  It has been 3 months since Tootsie's last round of antibiotics and she is feeling great!  The probiotics have worked well for her.  We started with Renew Life Ultimate Flora for adults and this week we switched over to Innate Response 20-14 Ultra Strength (recommended by our ND).  She is taking 1/2 a capsule every morning and Buddy is taking a whole capsule.  We haven't kept up with the sauerkraut juice (it stimulates stomach acid and is full of digestive enzymes, probiotic bacteria, vitamins and mineral) because Tootsie only liked it in her chicken broth and she has grown tired of the broth.  We haven't kept up on the coconut oil either because she says she doesn't like the taste.  I was hoping the caprylic acid in the coconut oil would help keep the yeast at bay.  So far, the probiotics and low carb/low milk diet seem to be doing the trick.   

We have been working with a new naturopathic doctor that specializes in digestive health.  Her name is Dr. Deb.   She has been a great fit for us and has renewed our hope in breaking this bacteria/yeast overgrowth cycle.  Our daily regimen for both kids includes: digestive enzymes, multivitamins, vitamin D3, cod liver oil, detox herb tea (mint, nettle, & horsetail), l-glutamine, and probiotics. 

Buddy has been feeling great since starting the digestive enzymes.  He is taking Digest Gold before every meal and snack.  We purchased the enzymes last July, but I got nervous about trying too many supplements on my own, without the direction of healthcare provider.   When I called Dr. Deb a couple of weeks ago, explaining Buddy was having sharp/crampy tummy pain soon after eating, she said to introduce the enzymes.  They have worked wonders!  He isn't having tummy pains, he is falling asleep easily, and wakes up rested.  His overall mood is upbeat, which is great to see.  Hopefully this feel-good stretch continues!  It has been 11 months since Buddy was diagnosed with celiac disease. 

Enjoying a rare warm Spring day.
Caught his limit on opening day!

Our tiny dancer.

Cutting flowers for her teacher.

Friday, March 15, 2013

Darn SIBO & Yeast!

Well,  Tootsie had a major setback!  As you probably know, she's on a monthly maintenance dose of Xifaxan for Small Intestine Bacterial Overgrowth (SIBO).  She has done amazingly well this past year while on this regimen, but at her last GI appointment in December her GI doctor (and my hubby and I) thought it would be a good idea to try to space the intervals out to every 2 months.  The dietician thought she needed to gain a little weight and recommended whole milk with cream several times a day for added calories.  Well...that was a recipe for disaster!  We made it 6 weeks the first time around and Toots began to belch and pass gas frequently, and ended up back on Miralax.  She had been off of it since April of 2011.  We treated her with the maintenance dose of Xifaxan and she seemed to feel okay...still burping and farting, and needing Miralax, but seemed like she was plugging along okay and was her happy little self.  Well, we tried to push it 8 weeks again and made it 6 weeks...her symptoms were worsening.  She started waking up earlier and earlier in the morning.  Her normal wake-up is 7am.  She was starting to wake up at 6am, then 4:30 or 5am.  She was beginning to have mood changes and nightmares.  I knew this meant the bacteria was out of control.  It had only been a week and a half since she finished her last round of Xifaxan, but I felt we needed to do something so I started her on another 5 days.  Things weren't getting better.  I called her GI and told him I didn't think the Xifaxan was working.  He really wanted to get her in for a breath test to test for SIBO.  I thought that was a great idea.  I called the lab and they couldn't get her in for 3 weeks.  I told them I'd take it, but to call me if they had any cancellations.  As the days went on, I knew she wouldn't be able to handle to pre-test diet and called GI back to see if we could try a round of Flagyl.  He agreed to give it a try.

Over the next couple of days she started having "events" that looked like seizures.  She would feel them starting in her legs first and she would start thrashing around kicking her legs, stiffening her arms, and arching her back.  She would either grunt or scream out as her body stiffened.   These events would last anywhere for 2-10 minutes and were happening frequently...2-5 times per day.  We called down to her GI and told them we couldn't make it 3 week for the breath test, and described the events.  They wanted us to see the neurologist.  I called for an appointment and they couldn't get us in until April 10th (2 months!)...there was no way we could make it 2 months.  A couple more days went by and she began having these episodes in her sleep so we packed up and headed for the ER at the Children's Hospital where she's a GI patient.  She had an "event" in the ER so they decided to admit her overnight for a video-monitored EEG.

The technician arrived at 8PM to get her hooked up.  She ended up having an event around 9PM.  We were so happy it happened while she was on the monitors.

The neurologist made her rounds at 11PM and talked with us for an hour.  She was amazing.  We loved her bedside manor and we felt completely at ease with her.  She said Tootsie's events were non-epileptic seizures.  She said it was stemming from the infection/imbalance in her gut and once we got that squared away she predicted Tootsie would return to normal.  I pointed out that Tootsie's tongue had become quite coated with yeast and I felt like it was contributing to the episodes somehow.  She agreed that Toots had thrush and could benefit from yeast treatment.  She prescribed 14 days of Nystatin, 5ml - 4 times a day.  We were released the following day and couldn't wait for the anti fungal to kick in!
8th day on Nystatin
After about 24 hours on the Nystatin, Tootsie started having die-off symptoms.  She was acting intoxicated.  Seriously, like a little drunk person.  Over the course of a week things were improving, but not as much as we had hoped.  She still had the thick coating on her tongue and she was still having seizures, although not as frequent as before.  I ended up taking her to the walk-in clinic to see if we could switch her over to fluconazole (Diflucan).  The doctor thought the coating was just too thick for the Nystatin to penetrate and said it could take weeks to see any improvement.  He thought it was a good idea to switch to fluconazole.  He prescribed 3 days worth.  We saw immediate improvement!  By the next morning the coating was starting to disappear.  While on the new medication she didn't have a single seizure.  It wasn't until the 3rd day after finishing the fluconazole that we started seeing the coating return and felt like the seizures would soon follow (and they did...she had one that night).  She was due for her well-child exam with the pediatrician that day so I asked if we could do another round, a longer course.  Her pediatrician felt like a 7-day course would be best...and wanted to do a liver & kidney functions test if we needed to go any longer than that. Seven days seemed to work pretty good.  Her tongue now looks completely normal and the seizures haven't returned.  

We saw GI for a follow-up after all of this and he is thinking about changing up her monthly treatment, but said he'd get back to us.  He's thinking of alternating an antibiotic with an anti fungal each month.  We'll see what he comes up with.  We are having a hard time with the idea of having to medicate every month so we've consulted with a naturopath that specializes in SIBO.  She recommended purchasing the book, Gut and Psychology Syndrome by Dr. Campbell-McBride.  The book is really good!  It totally describes what Tootsie is dealing with (minus the autism) and suggests a specific diet to follow....and supplements to introduce. The only problem is, half the foods on the diet are off-limits to fructose malabsorbers.  Lame!  She also outlines a way to introduce a probiotic, which we haven't had success with in the past.  We are giving it another try and this time starting with a very small amount and slowly working up to a therapeutic dose.  

Good news is, Tootie's back in school & dance and is feeling much better.  She isn't 100%...I feel like there is some residual yeast in there, but I'm hoping the diet modification we are trying (no milk & very low carbs), along with the probiotics, and other supplements (cod liver oil, caprylic acid - in the form of coconut oil, sauerkraut juice - read the book!), will help her to feel great.

Here is a great website about yeast overgrowth: The Candida Diet