Tuesday, June 24, 2014

It's No Accident

This is the story of a child with toilet issues, and our journey in resolving them. I share it for anyone who may be as lost as I am in helping a child with this.  It can be embarrassing for the child, a self-esteem issue, and I have felt completely helpless when toilet training just doesn't work.


LJ has been having toilet issues since August 2013.  Actually, it has been off and on his whole life, but you've read most of what happened in earlier posts.  I think for awhile we were in the "healed" zone...I haven't written in almost 2 years!  But this past year, I started homeschooling and we moved, and well, blogging on the Gut Girl was forgotten in the midst of our chaos.  Oh, and I have a toddler running around constantly creating havoc, so by the end of the day, I've forgotten what it was I was supposed to do, if it wasn't chasing her. 


So we went to the urologist for daytime and night time enuresis (urine incontinence).  At the time, that is all it was.  Ironically, it took us 3 months to do this despite the fact that my husband works in this field.  He claims he knows nothing since he treats adults, not kids.  She diagnosed him with bladder spasms.  She prescribed a stricter diet, taking out dyes and melons in addition to the other things he already does not eat for optimal gut health.  She also prescribed Detrol, but explained there were 20 other drugs that he could try if this didn't work.  So we tried it.  It helped some, in that he just went to the bathroom less often, so technically he was "drier".  If I didn't remind him every hour, he still had fewer accidents.  Then I doubled it per her instruction to see if it would help at night as well, since we were still having major issues at night, despite double pull ups.  Then I noticed, he basically never went to the bathroom at all.  So yes, it made him drier.  It made him so dry, he never went, except at night.  I started having this niggling feeling something else was going on.


Somehow, I came across this book called "It's No Accident" by Steve Hodges on Amazon's website.  I started reading some online, then had the book shipped to me.  It is a fabulous book, and I highly recommend it.  It clued me in on many things, and helped prepare me for what to do next.  The premise was that bladder spasms were rooted in constipation.  Well, I knew one of the side effects of Detrol was constipation, and all the dots started coming together.  I read some of the book, and after 30 pages, even this gut girl could not read more about pee and poop that night.  So I skimmed through the rest, and decided before we tried edemas and Miralax or went to the G/I doctor who I knew would laugh at me for requesting an x-ray, we would try a Magnesium protocol.  He had also started having significant meltdowns and bowel accidents this spring, and I had started charting both his behavior and his toilet habits each day (well, I printed it out, he charted it).  So we did Magnesium glycinate, which is a chelated form of magnesium, and a good form for any that have struggled with diarrhea.  While that was not my current concern, based on his past history, I was afraid too much Magnesium would not be good for him. I introduced it very gradually, also because he is so sensitive to so many supplements and drugs, and has regressed behaviorally and with toilet training on some.  Although, I am not sure how much worse we could have gotten.  My husband suggested giving him Magnesium Citrate, only it didn't work right away. In fact, it hardly did anything after an adult dose.  We scratched our heads a little, since he should have acted like the night before a colonoscopy. He started having multiple meltdowns a week, he had complete urine and bowel incontinence, and he started napping.  So we started making the doctor rounds.  I was starting to freak out.  Not only were his autism symptoms worse than they'd been in 3 years, the naps concerned me.  He also has an immune deficiency, and last fall his other immune numbers were not great. 


I will skip the part about the other doctors and go straight to the G/I appointment.  First of all, if my son did not have significant behavioral symptoms that indicate his autism and are a relevant symptom of what is going on with him most of the time, I would completely leave it out of his medical records. From the very first, the G/I dismissed his G/I symptoms as autism, told me going twice or less a week is not constipation, and dismissed his immune deficiency and food allergies as irrelevant.  Now, if you know anything about food allergies or immune deficiencies (um, hello, 80% of your immune system is in your G/I system...did she miss that in med school?), you know that the G/I system is always relevant.  So after some crying and begging and pulling out the Pediatrics supplement (HER medical journal) on G/I symptoms in kids with autism from 2010, she finally agreed to do an x-ray.  She warned me if it was clear, that his symptoms were probably all behavioral.  And then it came back not clear.  Not even not clear, but he had fecal impaction halfway up his ribs.  He had Mag Citrate the week before, the new vitamins the neurologist gave him had been making him go for a week, and he had had a bowel movement 30 min before the x-ray.  This kid was seriously impacted.  She prescribed Miralax and senna.  Ok, we have a new plan.


But soon we are waiting for our prescription company to send us the Miralax (why pay $20 when you can pay $5?).  My husband didn't want to wait, so we did Magnesium Citrate again.  Nada.  A few days later, the Miralax came, but I was house-bound with the kids due to meltdowns and naps, and forgot to get the senna.  She prescribed 8 scoops.  Everyone I have talked to has never heard of anyone being prescribed 8 scoops of Miralax for a clean out.  So we gave it to him.  Nada.  He went twice, and went on his merry way.  He should have not left the bathroom for hours.  I started giving him the maintenance dose of 1/2 scoop twice per day.  While the first few days were better, by a week, the meltdowns were back.  I called the doctor about doing another x-ray and I was getting worried the Miralax wouldn't work either.  The nurse called me back and we talked.  She said to get the senna, try again, and she would get me in for an x-ray within the week.  I breathed a sigh of relief ...I was not crazy that these things were not working!!!  I got some senna, and we went for Round 4 of cleaning LJ out.  It worked!!!  Only now, the next job is getting his body to do it regularly, and on its own.


And we are still working on that this week...but I think the moral of this story is, follow your gut.  My gut said, my son's behavior was the result of his body not working correctly.  My gut said, he could not help his accidents.  My gut said, he needed help.  And I am so thankful that I read that book, begged the G/I for an x-ray (a recommendation by the book, "It's No Accident"), and pursued help for my son despite the skeptics.  I believe in God, and I am so thankful that He led me to the answers.

Tuesday, May 29, 2012

New Study re: Gut Bacteria

This is a new study out. We have never tried the antibiotic recommended here for our kids' IBS symptoms. In fact, anytime they have had to go on antibiotics, it has created more problems with the gut, not less. Saccharomyces Boulardii is our favorite probiotic in treating chronic diarrhea with IBS. But I thought I'd share in case. I did run across a forum reference asking if you could take rifaximin with VSL #3 (a very strong probiotic) and Sacc B. The answer was yes, you can take it with Sacc B, it will help with side effects from the antibiotic, but the antibiotic will kill the VSL #3. VSL #3 is a probiotic we have considered, but considering my kids react sometimes negatively to certain probiotics, we have waited to try it. I will also share studies & articles on Sacc B. Our new form of probiotic is kefir water (since we have milk allergies.) We take kefir grains and make kefir water. It has definitely worked well for our kids and their intestinal health. That is a whole other post. It is also mentioned in the Mercola article below. Here's to healthy guts! (And my apologies for having issues getting the links to post correctly.)

http://www.medicalnewstoday.com/articles/245874.php

http://www.blogger.com/%20http://articles.mercola.com/sites/articles/archive/2012/03/07/can-probiotics-prevent-celiac.aspx?e_cid=20120307_DNL_art_2

http://www.blogger.com/%20http://clinicaltrials.gov/ct2/show/NCT00589771

http://www.ncbi.nlm.nih.gov/pubmed/21301358

http://www.ncbi.nlm.nih.gov/pubmed/17306006

http://www.blogger.com/%20http://www.ncbi.nlm.nih.gov/pubmed/16874872

http://www.sboulardii.com/en-eng/professionals/trials/index/266

Monday, January 17, 2011

Buffered Vitamin C and more supplements

I feel like I am constantly tweaking my children's diet as if I'm in research dealing with my little lab rats. But with LJ, all things gut relate to his behavior. In November, we started having lots of potty training and behavior regression and I started having to send extra clothes to school again. I realized it was due to switching his probiotics from Culturelle to Therbiotic Complete (see last post). I switched him back to Culturelle, and in 2 days, he was not having any accidents and most behavior issues were obsolete again! I kept EK & JD on Therbiotic, because it seemed like it was helping. I share this, because it shows me that different guts need different probiotics, and it is valuable to try different ones to see what helps you most.

Slowly over the holidays, I started reducing fruit in our home to apples, bananas, and pears (mostly for LJ). EK & JD's dirty diapers went from 3-5 times/day down to 1-2/day. With the exception of Christmas day, when they had candy canes with breakfast, and we changed 10 diapers in 5 hours! Definitely IBS-like symptoms from the sugar...so also limiting sugar now. But it nags at me...what 2 and 3 year olds can't eat fruit?? They don't have true allergic reactions...their gut is just too inflamed and acidic to tolerate fruit. And how do these small children, who have had a relatively healthy diet from birth (and were breastfed), have such acidic guts already???

Last week, I went to see the kids' PA who helps us evaluate supplements. Because if your kids cannot eat most fruits, how do they get any kind of proper diet and vitamins? In a prior post, I asked about how a minimal dose of Vitamin C goes straight through JD. So our family PA CJ, he suggested buffered Vitamin C. There's this stuff called Ester-C, which is for guts that are more acidic and need something more gentle.

http://www.ester-c.com/pages/benefits.aspx

The kids have been on it a week, with no side effect so far! They are also on Juice Plus (whole food based vitamins - fruit, veggies and antioxidant berries) which they seem to tolerate really well, but I want to make sure they're getting all the Vitamin C they can get, especially during the winter sick season.

The other supplements that have really made a big difference in their color and form have been L-Carnitine, Acetyl-L-Carnitine, and CoQ10. JD had an organic acid profile run this fall and it came back that his citric acid (Krebs) cycle is not functioning properly, so he needed these supplements anyway. Then we had our mitochondrial buccal swab study (for complexes I & IV) for all 3 kids come back positive, which means all of them really could benefit from these supplements to help their bodies function more like they are supposed to function. They give their cells more energy. The buccal swab study showed that there is significant decreased activity in our children's mitochondrial functioning. This is why these supplements can be so valuable, and probably why I've seen such great results with JD & EK already.

http://www.lcarnitinebenefits.com/
http://www.lcarnitinebenefits.com/acetyl-l-carnitine-benefits
http://www.preventive-health-guide.com/coq10.html

I am not a doctor, so I can't tell you if you or your children need the carnitines or CoQ10, and I would not recommend trying them without some doctor giving you medical reasons to try them. If you live in Charlotte, you can message me and I can direct you to a family practitioner PA who can help run tests and evaluate whether these would be an option for your family. I can whole-heartedly recommend the buffered Vitamin C if you find fruit and the regular Vitamin C irritable to your gut.

I know this blog is particular to our family's gut challenges. If you have questions, feel free to message me, post comments/?s, etc. If I don't know the answer, I would be glad to do some research and post on it. Hopefully this long gut journey for our family will be beneficial to others and give some new ideas.

It looks like we may be able to have 3 kids with healthier guts in 2011, and for that I'm very thankful!!! :)

Wednesday, November 3, 2010

Peppermint Oil & Artichoke Leaves

Sorry I have not posted in so long. I do tend to start off great, but have a hard time keeping it up. We did just recently celebrate our 10th anniversary, though, which created a lot of life chaos. And I took up my old part-time job. But I think things are settling back down now. So here we go...

Recently it was recommended to me to do peppermint oil capsules. I am leaning towards JD & EK having a leaky gut/IBS type gut. But too much peppermint oil can be toxic. Do any of you do peppermint oil capsules or enzymes? Someone also heard of Dr. Oz talking about artichoke leaves although I found it had more to do with nausea, which he links to indigestion. Anyone have experience with these, good or bad? Here are some links if you're interested.

http://www.helpforibs.com/supplements/

http://www.irritable-bowel-syndrome.ws/peppermint-oil.htm

http://www.healthyfellow.com/266/artichoke-leaf-for-indigestion/

http://www.drozfans.com/dr-ozs-advice/dr-oz-stomach-ache-remedies-aloe-vera-juice-artichoke-leaf-extract/

We have recently switched from Culturelle to Therbiotic Complete. Culturelle has a minute amount of dairy in it and while I doubted my kids having a reaction to that little amount, it is so interesting to me how different their stool is. I had my first constipated kid (JD) when I switched to TC. Their stools are definitely more firm, both his and EK's. LJ I have a harder time knowing, since he is potty trained now. And he generally does not have the same reactions like JD & EK do. He has reactions to foods, they're just different reactions. But back to the constipation. JD was going 3 or 4 times in an hour to two hours little rocks. I had to call the G/I because I thought constipation was usually not going for 3 days or more, having never really seen it in my kids before. Of course, she recommended Miralax and juice. Ok, I can handle giving him a little juice, even though it's irritating to his gut and I'm just changing constipation for inflammation. But Miralax? For a kid that usually has diarrhea? Needless to say, I just fed him lots of juice & fruit & water. Of course, I just recently read how Aloe Vera juice can help. I think we're back on schedule. Thankfully. I was changing him before getting in the car, after getting in the car, and when we arrived at Target across the street! And it's not like it takes me a few seconds. I take at least 10 minutes for each transition, making sure we have enough food for our bottomless pit on our errand running, waters are full (especially for my camel JD), and we have all our other basic needs for being out of the house for awhile. And leave room for JD & EK's regular protests or last requests or last poops. :)

And just another couple of "Tips of the Day", here is a good synoposis of where to start in taking care of your gut by good ol' Dr. Oz.

http://www.doctoroz.com/videos/cure-your-upset-stomach

Here is a link that talks about what causes IBS. I think it's interesting that the 2 highest triggers are dairy (casein) and wheat (gluten)....hmmmm...any wonder my kids are on elimination diets????

http://www.sharecare.com/question/what-causes-irritable-bowel-syndrome

Friday, August 27, 2010

Brainstorming :: Vitamin C

Okay fellow mommies, I need some help. We all got colds in our house last week, and with LJ starting school this week, I boosted us all up with some Vitamin C. LJ & JD both just had 1 250mg chewable of Vit C. JD had diarrhea. LJ used to, too, but I did not see that this week. The lowest dose of intolerance of Vit C is 1-5 grams! Does this mean malabsorption, even though JD tested negative for malabsorption with the G/I doctor this spring? Am I just over-thinking it? But he's always had diarrhea with Vitamin C & Calcium/Magnesium chewables. I assume the Cal/Mags are due to the citrate version (he gets Tums now for the carbonate version). Again, LJ has the same problem. Do I give more Tums (I'd hate to constipate)? I try to keep doses minimal, unless there is reason to give more.

I just cannot figure out why anyone would have diarrhea on such a low dose of Vitamin C! I'm back to changing his diapers 4-5 times per day! :(

Thanks!

Monday, August 16, 2010

Saccharomyces Boulardii

So my last post talked some about the neuro-gut correlation. 2 of my children this past spring had 6 week stomach bugs. One had been on a regular probiotic, Therbiotic Complete, which is an excellent probiotic (got thru New Beginnings Nutritionals & expensive). Because they could not keep food down, I changed to Culturelle dissolvable packs (via Target, and tasteless!) so I could help heal their guts. It seemed like LJ's intestines were shredding, so I knew I had to throw a bunch of stuff at him. The problem is, it's not like probiotics are a first-case treatment at your local doctor's office. Honestly, I didn't know much about them until we started the biomedical route with LJ's autism. It is recommended that you rotate probiotics about every 3 months, so that your body doesn't get too accostomed to just one.

So that leads me to Saccharomyces Boulardii. After these horrible stomach bugs, I added Sacc B to his supplement regimen. What we got out of it was nothing short of amazing. Those of you who just want to feel better, or have your kids feel better, may not see these kinds of things come about. LJ started doing handwriting, and drawing amazing pictures for him beyond his usual rainbows and scribble.

From Wikipedia:

Saccharomyces boulardii (brand name Florastor, among others) is a tropical strain of yeast first isolated from lychee and mangosteen fruit in 1923 by French scientist Henri Boulard. It is related to, but distinct from, Saccharomyces cerevisiae in several taxonomic, metabolic, and genetic properties.[1] S. boulardii has been shown to maintain and restore the natural flora in the large and small intestine; it is classified as a probiotic.

Boulard first isolated the yeast after he observed natives of Southeast Asia chewing on the skin of lychee and mangosteen in an attempt to control the symptoms of cholera. S. boulardii has been shown to be non-pathogenic, non-systemic (it remains in the gastrointestinal tract rather than spreading elsewhere in the body), and grows at the unusually high temperature of 37°C.[2]

S. boulardii is often marketed as a probiotic in a lyophilized form and is therefore often referred to as Saccharomyces boulardii lyo.

Something that I thought was very interesting from this Healthline website http://www.healthline.com/natstandardcontent/saccharomyces-boulardii

Sacc B can show to help diarrhea related to: antibiotics, virus, C.diff (bacterial), in children, traveler's, IBS, Crohn's, etc. Other important qualities are it survives any acidity in the intestines, and it is a yeast species that does not grow Candida yeast or feed it. (Note: Candida yeast is known to gather/colonize and grow in the gut to a point in autistic spectrum or immune-compromised people that it is difficult to eliminate it and requires anti-fungals like caprylic acid, garlic, oregano, Nystatin and Diflucan.) So basically, it can help improve diarrhea, regardless of source. This is especially helpful when all your stool cultures come back negative, like all of my children's labs. If it's viral-related (thereby unprovable), it can still help.

Autism Coach says:
http://www.autismcoach.com/Saccharomyces%20Boulardii.htm says:

Saccharomyces Boulardii is a probiotic non-colonizing yeast species closely releated to Brewers yeast. It is not related to yeast group to which Candida belongs. Soon after supplementation, S. Boullardi "blooms" and quickly becomes established in the gut, where it can produce lactic acid and some B vitamins.

Extensive studies and clincal use show that S. Boullardi can:

Displace pathogenic yeast species, such as Candida, in the gut
Increase levesl of IgA
Support the establishment of friendly bacteria in the intestines
Supports nutrient absorption in the small intestinal mucosa

S. Boullardi and Culturelle are the two single most effective probiotics my family has used to reduce yeast infections and to support the immune system.

I really am getting to the point our whole family is about to be taking it. There are very little, if any, side effects to be found with Sacc B, and it only does great things for those with sensitive guts. You can take 1-3 capsules/day. They are just a little tart, like a lime, if you empty a capsule into water for your child.

Wednesday, August 11, 2010

Irony

So, after I start a blog about gut issues, JD (2nd son), gets sick with the stomach bug and I have to postpone his big brother's birthday party. *Sigh* JD's party got cancelled completely, since LJ and EK had the never-ending stomach bug something-or-other for a combined 2 months. I will NOT be excited if EK's party in December gets cancelled or postponed for the same thing. Do you think doctor's will sit up and take notice that maybe my home has the more-often-than-usual issues with guts if that happens?

Thankfully, that day I had already arranged to go out shopping (groceries, party shopping, not actual FUN shopping) and didn't have to deal with all the fun clean up.

Today we were back to normal, after we spent half the morning helping LJ adjust to the fact that the party was not today. But I digress.

We have strong G/I history. My dad had ulcerative colitis before he had surgery several years ago. DH & his dad have acid reflux. LJ (firstborn son) actually has acid reflux. It's odd to me that I am just now realizing I probably should have mentioned how bad his diarrhea was and his projectile vomiting to our pediatrician, but what did I know? I didn't realize till I had JD & EK that not all kids were that bad. It took this year & random vomiting in the middle of the night and no fever that I figured it out. Because sometimes it just looked like alot more like a bad version of spit up. (Hmmm...yet another reason the diet helped.) Me, I have minor gut issues, but definite allergies (which is related to the whole immune system issues the gut issues imply) and other random things that are also now all coming together. For now, I am probably the healthiest physically in my family. Mentally, well...yeah. That's a whole other blog. Maybe The Neuro Girl or Needstobelockedup Girl. You know you live a crazy life when being locked up just stops sounding so awful. But again, I digress.

The point of this post was supposed to be irony. You'll find the later I blog, the less organized my post may be. Hopefully next time I'll have more time to post on the kids' history & what has helped.

One of the key things about the gut is, it is closely linked with the immune system and the brain. So often, when you treat the gut, you see a domino effect with any other immune or brain issues. For example, I tend to feel like I live in a fog and could sleep all day. The neurologist I saw said I was borderline narcoleptic and had significant periodic leg movements (my DH says it feels like there's a hurricane in the bed). I am also borderline hypoglycemic (I'm borderline everything). So I was finding if I had Chick-Fil-A sweet tea or milkshakes or brownies, I was prone to running up curbs and into rocks while driving. Apparently this crash never shows up on tests thru 3 pregnancies. But I pretty much don't eat any of that unless I'm home and ready to take a nap. But when we went GFCF (gluten free casein free or wheat free/dairy free) for LJ, over time, I started just eating the similar diet they had. Now we hardly have bread in our house, and sweets are only GFCF (with the exception of my stash). But I learned when I ate LJ's brownies, I don't have the crash I have with my uber-favorite Duncan Hines fudgy brownies...and the less sugar and carbs I ate, the better I continued to feel. The less foggy my brain was throughout the day. Don't get me wrong, I'm still low energy, and 10 hours of sleep a night will never be enough, but it's alot better. And imagine, I can actually think for my poor children now. I'm sure they've been wondering, "Gee, Mommy, where've you been all these years?"