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!

Monday, February 13, 2017

New GI doctor

Here we are 1 year later...Tootsie is 11 and Buddy is 13.

We have a new GI doctor that I am super excited about.  His name is Dr. Abdullah.   He has given us hope that we can get to the root of Tootsie's recurring SIBO issue.  She has been dealing with this for 6-1/2 years now.  We have seen so many health care providers over the years it's ridiculous... Naturopaths, Pediatricians, Walk-in Clinic doctors, Gastroenterologists, an Endocrinologist, a Neurologist, Counselors, Acupuncturists, and Massage Therapists.  I finally feel like we have found the doctor that is truly going to help us.  He's the only integrated GI in the state, meaning he works directly with a naturopath to formulate a treatment plan.

We are currently in the info-gathering stage.  Tootsie will have a lactulose breath test on Tuesday, February 21st to check for SIBO.  She has had so many breath tests.  Probably 8 of them...with only 3 successful ones.  She usually vomits, which voids the test.  This time Dr. Abdullah prescribed Zofran so hopefully she'll be able to keep the solution down.   He is also having her take a tablespoon of mineral oil each day to address her mild constipation, vitamin C for easy bruising, and 1,000 IU of vitamin D.  And she is doing a gluten challenge by eating a saltine cracker each day.  

At the breath test appointment she will bring in a stool sample and the following labs will be drawn: Food Allergy Panel, CBC w/ diff w/ plt, Chem 18, C-Reactive Protein, Free T4 (Thyroxine), TSH, Celiac Panel, Serum B12 and Folate, OH Vitamin D.

Tootsie also had her well-child exam last week.  She is following her height curve on the 14th percentile (53.8"), but her weight (63 lbs) has dropped to the 5th percentile.  Once we get her gut healthy I'm sure we'll see some weight gain.  That is our hope!  

We have exciting news regarding Buddy!  He is no longer showing signs/symptoms of having Fructose Malabsorption.   He is trying all sorts of new foods that have been on the AVOID list for 4-1/2 years.  It's like watching a baby eat a new food for the first time.  He doesn't know it, but just watching him eat an apple or homemade sloppy joes almost brings me to tears.  Celiac disease and having to avoid gluten is a drag, but it will be so much easier without having to worry about fructose or FODMAPs!

Buddy is growing like a weed.  I swear you can almost watch him grow.  He is 5' 5-1/2" and 105 lbs. He has passed me up and is now working on dad...just a few inches to go!

Saturday, January 23, 2016

Happy Birthday, Buddy & Tootsie!

We are still here!  
It has been almost a year-and-a-half since my last post.  As you can see, the kiddos have really grown!  January is birthday month.  Buddy is now 12 and Tootsie is 10!  They are doing really well, but we still have little bumps in the road here and there. Buddy hasn't needed SIBO or yeast treatment since my last post.  Tootsie has needed it once.  We now see a naturopath in Seattle that has her on a low dose of erythromycin, every night at bedtime, for the next 6 months. We'll check in with the doctor after 6 months to see if we should continue this regimen.   The erythromycin is being used to stimulate the cleansing waves in her intestine while she sleeps.
SIBO is a disorder that relapses because eradication itself does not always correct the underlying cause, which is thought to be a deficiency of the migrating motor complex (MMC) in many cases.  The MMC moves bacteria down into the large intestine during fasting at night and between meals, clearing them from the small intestine (SI) on a daily basis.  Bacteria can repopulate the SI within 2 weeks of finishing antibiotics, herbal antibiotics or elemental diet, without prevention, though it may take longer.  If diet alone is used as treatment, the underlying causes must still be addressed for optimal improvement.  - Allison Siebecker
 Their diets remain gluten-free, very low fructose, low FODMAP, and milk is lactose-free.  That means we rarely eat out and social functions, which involve food, are tricky.   We always have a snack bag with us.  If they go to birthday parties or sleepovers, they take their own food and treats.  It can be a drag, but when we push the limits they suffer...and it's just not worth it.

Buddy's birthday was on the 7th of this month.  We took him and 6 boys to the paintball park.  They had so much fun!  I fixed some GF cheese pizza from Costco and some GF brownies for him and his buddies...and figured he could have 2 pieces of pizza and a thumb size piece of a brownie.  Well, I wasn't watching closely and he ended up visiting the candy machine and shared a 3 Musketeers with his friend, then ate several pieces of pizza and a whole brownie!!  He was fine that night, but the next morning I noticed red circles under his eyes.  Then, the following day the depression, anxiety, and tummy pain hit.  He said he felt like gas was trapped under his ribs.  It's a 3 day process for him to work through the symptoms of being "fructosed"...which meant he had to miss a few days of school. Ugh - It's not worth it, Buddy!

These are the lessons they have to learn on their own because mom and dad aren't always able to monitor things for them.   It's the pits to be different from everyone else.  :(  I am so very proud of them though...they rarely complain about their adversity.  They accept it and keep pressing on.  I love them to pieces.  :)

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!