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