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, 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.



Thursday, February 23, 2017

THIS EMAIL BRINGS TEARS TO MY EYES

I blog about my kids' medical issues with hope it reaches a family struggling for answers. When I hit "publish" I often wonder where it will travel on the interwebs...and if it actually does reach the audience it's meant for. 


Well, I received confirmation this morning from a thankful mama. This email broke my heart and made it swell at the same time. It's a lengthy one, but a good one! ❤️ Thank you for sending this to me, "Jane"! I am so happy for your boy. Way to fight for him and not give up!! 


Our momma instincts are there for a reason...we must listen to them! 


Hello!

I can’t remember, but I think I may have reached out to you at the very beginning of our journey with Fructose Malabsorption back in 2008/2009/2010. 

We went through SO MUCH with trying to get my son diagnosed. And, I want you to know that YOUR BLOG is what put the pieces together for me and for him. I was so desperate for answers, and I knew it had something to do with sugar, but the doctors were almost laughing at me saying, “there’s no such thing as a sugar allergy”. Which, they were right. That isn’t the technical name. I knew in my gut it was sugar, but I didn’t know it had a name until I stumbled across your blog. Your blog literally saved my little man’s life. It gave a name to what my suspicions were. And without that, I just don’t know that he wouldn’t be on a feeding tube today or worse. So, from the bottom of my momma heart, THANK YOU for being so brave to document your journey in the way that you did. It made all the difference in my son’s life, and in our family’s life.

By the time we finally got the doctors to administer the fructose test on our son (I fought with CHoP for a solid YEAR to do that test), he was already 4 1/2 years old, and they told us through additional tests they had done on him that his liver and kidneys looked like he had been an alcoholic for 30 years. At that point, they told me he would likely not live past 30 or 40 years old. Devastating….. His fructose test was sooo off the charts they took it to a national convention of doctors that year to discuss it (His doctor is supposed to be one of the best GI’s on the east coast). His colon was stretched to the size of a small football, and his entire intestinal tract was impacted almost to his actual stomach organ. It took months to get his GI tract straightened out. I was 100% sure he also had SIBO, but the doctors don’t believe in that I found out. So, I just treated it on my own with any information I could find on the web. His EOE was out of control causing projectile vomiting very frequently…even of water. It was such a scary time. I also have found out, that his EOE is directly related to his fructose intolerance.

BUT…..Here I am, nearly 6 years later, my little man is OKAY, and I gotta tell you. It’s been REAL HARD! At one point he could only eat 3 foods safely. We almost lost him 3 years ago. And I had to fight with every single doctor to just listen to me and look at my food logs and spreadsheets of everything I had tracked for him. We have been super diligent with his fructose free diet, and I actually reference your Pinterest boards often for new ideas for foods for him. That UDI’s bread was a GAME CHANGER for us! THANK YOU THANK YOU THANK YOU!

Last year, we moved twice (we built a home, so one of those moves was just temporary housing). In the last 9 months, something big has changed for my "Jonathon". He has gained 6 lbs! He grew 2 1/2 inches! He has never gained more than a pound each doctor visit, and rarely gains any height. We’ve been revisiting a couple of the foods that were on our avoid list…which have all PASSED! WHAT??? I was told that this disease was life long! He would never be cured. That he would never be able to eat a corn chip or popcorn! My mind is blown right now. When he was so sick 3 years ago, they wanted to put him on a feeding tube for life. I fought so hard against that, that they flagged me at the hospital saying I was not doing what was best for my child. Can you believe that? But he COULD eat, he just couldn’t eat the apple juice, strawberry yogurt, chocolate pudding, apples, oranges, and tapioca pudding they were bringing him in the hospital! And that hospital was who diagnosed him with FM! Ridiculous! Anyway….sorry for that rant…. I’m sure you know how frustrating that is….

So, I’m looking through my email last week, and your most recent blog post came up. And I was so excited to read your little one was getting a good doctor. Then your update on your son made me CRY! Literally sob. I know what you mean about them trying a new food they couldn’t have before. I cry every single time that happens. And, once again, you are giving me HOPE that my little man may actually be able to eat an apple some day! He might be able to go to a restaurant and eat a meal. He might be able to go to a friends house and not be scared to death of food.  I AM SO HAPPY FOR HIM! AND FOR YOU! Congratulations! Seriously! That is so amazing! It’s my lifelong dream for my son.

We live in the suburbs of Philadelphia, but I would love to find a doctor, like you have found, out here to continue helping my son to possible FM freedom. We do keep him on a pretty gluten free diet. 

Sorry for the long winded email, I’m just so happy for your family. Sounds like things are really turning around in a positive direction for all of you.

Wishing you all the luck in the world! I just wanted you to know how much your blog impacted our life in such a positive way. How your posts actually help diagnose my little boy. And how your words have given me hope beyond words. 

With the sincerest heart, I thank you.


~ "Jane"

Tuesday, February 21, 2017

SIBO BREATH TEST

The GI clinic is 2 hours from home so we booked a hotel room for the night.  It was a great way to break up the really awful day of diet prep.  Tootsie is not a fan of chicken or potatoes so we had to get creative.  I cooked some chicken tenderloins in the Instant Pot with some water, salt & pepper, then ran them through the food processor and shaped the meat into nuggets.  Then put a couple slices of Udi's White Sandwich bread in the food processor & rolled the nuggets in the crumbs.  I refrigerated them overnight and microwaved them for 30 seconds when she was ready to eat them.  She said they tasted pretty good.  That's huge coming from a girl that generally won't touch chicken with a ten foot pole!  I picked up some plain baked potatoes at Wendy's and some jasmine rice at Asian1 on the way.   She took some Zofran at 11am and at 7pm.  That really helped keep the nausea away from being hungry.

Once we got settled in we went for a dip in the pool.  It was a nice distraction.  We had some decaf tea and watched a movie before calling it a night. 


I had Tootsie take another Zofran at 7:30am.  She was starting to feel really nervous about the test because of her past history of vomiting.  I assured her this medicine was suppose to help with that.  Here she is trying to get the solution down...


They gave us a "sick bag" just in case!  And said no screen time for at least an hour because that tends to make kiddos feel nauseous.  Just before the first breath collection (after baseline) she began to have diarrhea.  That continued for the first hour of the test.


Woohoo!  She made it.  Bag #10!  She blew into these bags every 20 minutes for 3 hours.


 They tried to get a blood draw after the breath test, but my poor Tootsie was quite dehydrated after 15 hours of no fluids.   They said to go eat some lunch and drink plenty of water then come back.  That did the trick!


Here she is at her favorite restaurant.  She loves the grilled cheese on a gluten-free bun with American cheese.  Sounds delicious, doesn't it?  lol  Poor little thing looks like she's been through the wringer.  I'm so proud of her.  She is such a trooper!  Her strength amazes me.


We go back down in a couple weeks to go over the results.  

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 ("Dr. A") that I am super excited about.  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. A 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!