My FructMal Girl

My FructMal Girl

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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!

Tuesday, October 10, 2017

FINAL GI APPOINTMENT

We just got back from Tootie's FINAL GI appt! That's right. Her last one. EVER! Dr. Abdullah and Dr. Buckle said she's healed!!! 🙌🏻  Praise the Lord!  I wish I would have recorded those words so I could play them over and over. They don't believe the SIBO or the FM will come back. Her only supplement remaining is the probiotic, and a multivitamin & vit D. I told them I was sad we wouldn't be seeing them anymore, but that I would be sending all my friends.     So here you go, my friends, meet the dream team!  

 pediatric gastroenterology
Dr. Bisher Abdullah, MD & Dr. Heather Buckle, ND
1420 3rd St SE Suite 106
Puyallup, WA 98372
253-268-0720 


Here is a letter I sent the doctors...

Dr. Abdullah & Dr. Buckle,

We can’t even begin to thank you enough for healing our girl.  We have searched for answers for seven years, from Bellingham to Tacoma.  We have sought online help from a doctor in Oregon and advice from parents all over the U.S. - and as far away as Australia!  We have scourged the medical journals, joined symposiums, listened to podcasts. We have seen naturopaths at 5 different clinics, GI doctors from Seattle Children’s and Mary Bridge.  We have seen specialists from neurology to endocrinology.  We have tried accupuncture, tinctures, bio-feedback, homeopathic remedies, massage, and essential oils.  We have treated with countless antibiotics, antifungals, herbal antibiotics, and supplements by the cupboards-full.   Our poor girl has been through a hospital stay with non-epileptic seizures.  She has endured cleanouts, blood draws, stool samples, numerous breath tests, and has been chained to the low FODMAP diet and almost no fruit…for SEVEN years. 

We want to thank you from the bottom of our hearts.  You have been an answer to our prayers.  Tootsie is now eating all foods, without any trouble whatsoever.  She is finally gaining weight and growing out of her clothes and shoes.  It has changed our lives!  We don’t have to pack her meals for play dates or figure out how long we’ll be away from home to know if she’ll have enough food to get by.  Classroom birthday parties no longer make us cringe and we can reply “yes!” to end of season basketball pizza parties.  And she can go to camp!  She has her first two scheduled this month.  

We have been so pleased with your compassion and knowledge.  Please keep doing what you are doing because you are changing lives.   We are sending everyone we know with tummy troubles your way.  Including friends from out-of-state.  We think you are the best in the U.S.  

Thank you & many blessings,

FructMal Mama & Tootsie













Friday, August 11, 2017

3 Month Follow up - Post SIBO/SIFO Treatment

Here we are 3 months post treatment of SIBO, SIFO, slow motility, and constipation.  I am THRILLED to report that FODMAP reintroduction (or in Tootsie's case, introduction) is going fantastically well!  Tootsie is eating all sorts of new foods without any issues.  Here are the foods she has tried so far that are working well:  wheat, garlic, onion, cashews, cantaloupe, blueberries, zucchini bread, raisin toast, lactose free yogurt, ice cream bars.  She has even tried a few apple slices! We cannot believe it!  This opens up a whole new world for her.  She has been going to friends' houses the past week or so without a packed lunch bag!  You wouldn't believe the amount of weight that has lifted from my chest.  I knew her health & diet was stressful, but now that the stress is lifting I'm realizing how weighted down I was by it.

She and I have eaten out at a Mexican restaurant where she had a chicken chimichanga with seasoned rice, she's had MOD Pizza with wheat crust, a Taco Time soft taco, Sushi with imitation crab, and Red Robin mac-n-cheese with wheat noodles!  Not the healthiest of foods, but fun for a special treat now and then.  She has gained 10 lbs since May!  She looks healthy and has so much energy.  I am so happy for her.  This has been a long 7 years!  

I want to hug Dr. Abdullah & Dr. Buckle!  How do we ever thank them enough?  They are the very best at what they do.  I am sending everyone I know with tummy troubles their direction.


Another super awesome feeling is packing up all of these meds and supplements for disposal!!! (Well, 90% of them anyway.  We'll keep the ones prescribed by Dr. Buckle, but the rest of them are leaving my cupboards for good!)


And this stack of medical records and research articles can be tucked away, out of sight!  We have poured so many hours into finding answers on how to heal our girl.  It is such a great feeling to finally be seeing the light at the end of this difficult path.



I hope you enjoyed reading this update as much as I enjoyed writing it!  It's an answer to many prayers!  The Lord has been our comfort and strength throughout this entire journey.  We pray that He continues to heal our Tootsie and we pray this SIBO/SIFO cycle will finally come to an end.



Wednesday, July 12, 2017

2 Month Follow Up - Post SIBO/SIFO Treatment


Tootsie had her 2 month follow up yesterday and is doing great!  She has gained 5 pounds and has grown 1 inch.  Dr. Abdullah (GI) and Dr. Buckle (ND) were very pleased.  Stools are perfect, no reflux, great appetite, and sleeping well.  Yay!  We get to start introducing FODMAPs in a few weeks.  Dr. Buckle believes she'll be able to tolerate most foods!  This is music to our ears.  I sure hope she's right.  We have been bound to the low FODMAP diet for 7 years!  Excited to break free from the chains!  So very thankful for this duo!!  They have given us new hope...hope for healing & normalcy. I can't speak highly enough of their expertise and compassion.



Tuesday, May 2, 2017

NEW GI - APPOINTMENT #3 (SIBO RESULTS)

Today's GI and Naturopath appointment went very well!   Tootsie's breath test results were NEGATIVE.  Hallelujah!  She has 7 days left of fluconazole and once that is finished she will discontinue the folate and N-Acetyl-L-Cysteine.   She will continue with the other supplements until our follow-up in a couple of months.   The doctors advised following a strict low FODMAP diet for 3 months before introducing new foods - this will allow time for the intestines to heal.

Tootsie is feeling good.  She isn't having many tics (stretching or verbal), she is eating well and having Level 3-4 stools on the bristol chart.  And she just started sleeping through the night in her own room!  It's amazing how intestinal dysbiosis can affect a person.  Happy to have it resolved!  We are so very thankful for our new doctors - for their compassion, their wisdom, and their desire to heal our girl! 



Tuesday, April 18, 2017

FOLLOW UP BREATH TEST

(Please view disclaimer.)

Tootsie had her follow-up lactulose breath test today to see if the meds were effective against SIBO.  We'll get results at our GI follow-up in a couple weeks.  We did get a copy of last month's results, which shows a strong positive.  As you can see, she was well above the 20ppm threshold.


We made the best of prep day again by doing a little shopping at the mall (Tootsie picked out some press-on nails...something she's always asking for, but I never let her get.)  We also stopped by Michael's to check out "Slime Headquarters".  If you don't know, slime is all the rage among tweens these days.  (Here is a YouTube video on what it's all about).  She did a manicure and pedicure in the room, we rented a movie, and went for a soak in the hot tub.  The day went by pretty quick and the Zofran worked out well at keeping the nausea away.  



The smiles disappeared the next morning.  She woke up feeling nauseous and even with Zofran on board the first 45 minutes of the breath test was pretty rough.  Toots felt like she was on the verge of vomiting and had to dig deep to keep it together.  I am happy to report she was able to complete the 3 hour test.  Way to go, Tootsie!!


We were able to get in to see the GI (Dr. A) and and the ND (Dr. B) while we were there for Tootsie's new & continuing signs and symptoms: thrush, keratosis pilaris flare on her cheeks, sore throat, chapped lips, irritability, and continuing constipation and bedtime anxiety....which all point to SIFO (Small Intestine Fungal Overgrowth).


Dr. A confirmed the SIFO diagnosis and Dr. B devised a plan to treat it.   

Tootsie will be taking:
Fluconazole 100mg daily, with food for 21 days
N-Acetyl-L-Cysteine 1 capsule twice per day with food during SIBO/SIFO treatment - disrupts biofilm and improves response to antifungal/antibiotic treatment
Folate 400mcg open 1 capsule twice daily for 21 days, mix with a little water, swish and swallow - to help rid of oral thrush

She will continue with the following supplements:
L-glutamine - 2 tsp daily to help heal digestive tract
Lactoprime Probiotic - to support GI health, regular bowel function and immunity
CalMag - 3 tsp daily to support regular bowel function (can increase by 1 tsp at a time until stool reaches Britsol type IV.
Motil-Pro - 2 capsules twice daily to support normal GI motility
Theanine -  increase to 2 capsules 2 time per day, to help reduce anxiety and improve sleep.
Multivitamin, Vit C 500mg, Vit D3 1,000iu



Thursday, March 23, 2017

HALFWAY THROUGH SIBO TREATMENT

Tootsie completed 2 weeks of Amox-Clav (250mg, twice daily).  She is doing well.  The past few nights she has wanted to sleep in her own room.  This is huge!  She hasn't been able to sleep by herself for 7 months.   Three nights ago she woke at 11PM and came to our room and finished the night in our bed, the next tight she made it until Midnight, and last night she made it until 2:30AM!   She started metronidazole (250mg, 1/2 tablet twice daily) last night and will be on it for two weeks.  Hoping it wipes out the methane producing bacteria and she is finally able to sleep peacefully through the night without waking.

The supplements are going well.  She does get a few minutes of heartburn after taking the MotilPro.  Dr B (the ND) prescribed an alternative if the heartburn is too bothersome.  She said it's a local discomfort caused by the ginger, but it isn't harmful.  We'll keep plugging along with it for now.
The alternative is Gentian (1 drop on tongue 3 times daily prior to meals) and 5-HTP (1 capsule at bedtime).

UPDATE:
The sleeping on her own only lasted a few nights.  Once we started the metronidazole she went back to wanting to sleep in our bed.  

Tuesday, March 7, 2017

NEW GI - APPOINTMENT #2 (SIBO RESULTS)

Tootsie had her follow-up with the gastroenterologist and the naturopath today.  The results of the SIBO breath test showed a strong positive, with a peak hydrogen of 136 ppm (the threshold his 20 ppm).  It was also positive for methane producing bacteria.  The blood test showed elevated levels for liver function, blood glucose, and white blood cell count.   Doctor would like to repeat these tests to rule out diabetes.  (I don't believe she has diabetes.  I think he was assuming her fasting blood glucose was 153, but the nurse had sent us to eat lunch because she wasn't able to draw any blood after 15 hours of fasting).  The celiac blood screening was negative, which means she can continue challenging gluten as long as it agrees with her. 

Both the doctor and the naturopath thought they could get rid of SIBO once and for all.  They also felt by doing so that Tootsie's fructose malabsorption will greatly improve...and possibly could cure it all together!  Say what?!  That was music to our ears.  We will definitely be praying for that.  

This is our plan of attack:

1.  Treatment for SIBO
Augmentin 250mg twice per day for 2 weeks followed by Flagyl 125 mg twice per day for 2 weeks for SIBO.

2.  Supplements
L-glutamine - 2 tsp daily, mixed with a little non heated beverage - To help heal the GI tract.
LactoPrime Plus SCD Compliant - 1 capsule daily - To help support GI health, regular bowel function & immunity.
Cal Mag Liquid - 2 tsp daily - To support regular bowel function
Motil-Pro - 2 capsules twice daily - To support normal GI motility
Curcumin - 1 capsule twice daily - To reduce inflammation, and control die-off reaction.  As needed.
Theanine - 1-2 capsules 1-2 times per day - To improve sleep & bedtime anxiety

3.  Blood work
Hepatic Function Panel
C-Reactive Protein
GGT
Glucose, serum
Hemoglobin A1c
Sed Rate

4.  Follow-up Breath Test
Lactulose breath test 2 weeks after finishing antibiotics & probiotics with Zofran (to prevent vomiting)

5.  Follow-up for results with GI and Naturopath
     2 weeks after breath test.

6.  Follow up with registered dietician to review diet log



_________________________________________________________________________________

I would like to answer a few questions that have come up from friends in the Parents of FructMal Kids Facebook group...

Why did Doctor prescribe Augmentin instead of Xifaxan?
Tootsie has been on Xifaxan off-and-on for 6-1/2 years.  Her previous GI called it "Vitamin X" and prescribed it monthly at one point.  The new GI (Dr. A) believes she has become resistant to it.  When she completes the Augmentin, she'll move to Flagyl.  This will work on the methane producing bugs. Tootsie developed a bad case of yeast overgrowth in 2013 after a round of Flagyl so Dr. A is using 1/2 the recommended dose for a longer duration.  The ND wants her to take Lactoprime probiotic during the course of antibiotics to also help prevent yeast overgrowth.

Did he say why she has SIBO to begin with?
He believes the underlying issue is related to abnormal motility.  He believes if we treat SIBO while addressing motility we can keep it from returning.  He believes she has never been truly SIBO free and has had chronic inflammation in her intestines resulting in fructose malabsorption.

How are you feeling about all of this?
I have hope again and I am excited!  I was feeling defeated when our last round of Xifaxan didn't work (prescribed by the Naturopath at Bastyr Clinic in Seattle).  I loved the ND there and she was studying up on SIBO and following the latest research, but it just felt like there was a missing link.  The underlying cause was not being addressed properly.  I hope to be able to share our success story with her someday.