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!

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

Monday, January 28, 2013

Hematology Results Are In!

I spoke with the nurse this morning and she said Dr. I wanted to monitor Buddy's blood cell counts.  The bone marrow biopsy is not necessary at this point!  Yay!  He was happy with the increase in Platelets and Neutrophils.  Great news!  He would like another CBC done in 3 months, then he'd like to see Buddy in 6 months.  

The tests also showed he is not deficient in b12, he's not anemic and his SED rate (inflammatory markers) and other chemistries were normal.  He was also up 2-1/2 pounds since starting Operation Weight Gain on December 29th (4 weeks ago).  Dr. I didn't think the mild depression or sleep issues were anything concerning.  He thought the anxiety from having his world turned upside down is all that is causing it.  We'll work on relaxation techniques in the evening to see if we can get him in bed and asleep at a decent hour, which will help with his overall mood.  The sore tongue that Buddy complained about was nothing more than an accidental bite...and the tummy upset seems to be non-existant if we keep up on his reflux medication.  He is also on Miralax daily to keep from becoming constipated.  

Tootsie is also up 2 pounds since December 29th!  We are trying to stretch out her Xifaxan (for SIBO) to every 2 months, but we had to start it at 6 weeks.  She was having a lot of gas, a little tummy pain after eating, was becoming irritable, and was waking at 6:00AM, then 4:00AM instead of her usual 7:00AM.  She's been on it for 3 days and is back to feeling good and is sleeping better.  It would be fantastic if we could ever figure out why she gets recurring SIBO...Dr. L (GI) couldn't give us an explanation.

Friday, January 25, 2013

Now we wait...

Well, we don't really know much until the lab results are in on Monday. The hematologist, which we liked very well, wanted to run more blood work. He said if the neutrophils and platelets are lower, then he'd need to do a bone marrow biopsy to see if Buddy's blood factory was working properly. He will also be looking for anemia and b12 deficiency...and various other things. He said b12 deficiency is actually a serious thing so we're now hoping he doesn't have that. The doctor didn't think he had it because his RBC level was normal at his last draw. I should have some results to post on Monday...

Waiting is boring.

Not so boring when the office has an Xbox!

Trying to be brave, but this part really gives Buddy anxiety.

Monday, January 21, 2013

Celiac Genetic Panel Results & Hematology

We heard from Dr. L's nurse and we got great news... Miss Tootsie's genetic panel came back with the following results: low risk, lower than the general population. We are thrilled! That was exactly what we were hoping it would say. What a relief!

Buddy's pathology & scope report look good. Again, no evidence of eosinophilic esophagitis, no h.pylori, no defects or lesions. Great news! But...Dr. L wants him to see the hematologist for his low white blood cell and platelet count. Here are his readings:

It took me a few days to digest the news and to get up the nerve to research what could be causing this. One thing I came upon that doesn't seem too scary, and seems to fit, is B12 deficiency.

Vitamin B12 Deficiency...

•Common in those with celiac disease, bacterial overgrowth & in those using acid reducing drugs for a prolonged period.

pale skin (√)
sore tongue (√)
easy bruising (when he was playing soccer)
stomach upset (√)
weight loss (√)
constipation (√)
trouble sleeping (√)
mood changes/depression (√)

•Clinical manifestations of vitamin B12 deficiency include:
Hematological changes, such as megaloblastic anemia (characterized by large red blood cells), and a low production of other blood cell types, which is known as pancytopenia. Types of pancytopenia seen in vitamin B12 deficiency include leukopenia (low white blood cell levels), thrombocytopenia (low platelet count), and anemia.

Hoping and praying this is all it is!  We see the hematologist later this week.

Saturday, January 12, 2013

Proceeded with Endoscopy

I was hoping we wouldn't have to do another scope since Buddy was doing so well this past week, but his doctor thought we should, and I'm glad we did.  Dr. L said it showed gastritis (inflammation of the stomach) and inflammation of the lower 3rd of his esophagus.  His blood work is in, but the pathology results haven't been posted yet.  From what I can see on his online chart, his white blood cells, total neutrophils, and platelets are below the normal range.  Not sure what that means, if anything.  The good news is - he gained 2 pounds, the villi have grown back in his small intestine, and his celiac score is 5!!  Six months ago he had partial to subtotal villous loss (villi increase the surface area for the absorption of nutrients in small intestine)...and his celiac score was 56 (it should be under 19).  We should get the pathology results by Wednesday...hoping it's sooner, I'm not good at waiting!

Dr. put Buddy on Carafate 4x a day to help heal the inflammation.  So far it is causing some tummy cramping, headaches, and it is decreasing the effectiveness of his reflux medication.  He's suppose to be on this for a week.  He missed school yesterday because his stomach was hurting and he was "throwing up in his mouth".  Yuck.  He's been up for an hour this morning and so far no complaints...but he hasn't eaten yet so we'll see...

So we are seeing some improvement, but we need to get the reflux and inflammation under control.  He is still having issues with fructose.  I started pushing his limit and allowed 1 mini GF cupcake on his birthday, then 1/2 a clementine orange that evening and he was sick for 2 days.  Darn.  I was really hoping he could tolerate it.

Tootsie had her blood work done for the celiac genetic panel while Buddy was in recovery.  Anxious to get the results!

Numbing gel

Warming packs

I.V. is in!  He said it hurt, but he was brave.

This is when the nerves kick in!  Lots of tears and anxiety when he jumped on the bed this time.

He did it!  Such a silly boy when he wakes up.  He was making us laugh.
Update: Buddy ate a Swedish pancake and now he's curled up with stomach cramps. I have a call into the after hours nurse to see if she can page the doctor. Not sure if we should continue with this medication.

Update #2:  I spoke with the on-call doctor and he said to stop the Carafate.  He said it's not an uncommon reaction...either the kids tolerate it or they don't.  We didn't give him his second dose of the day and he was able to eat lunch without pain.  Yay!  We should hear from our regular doctor on Monday, but the on-call doctor said he didn't see anything alarming on pathology results.  Good news!