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Thought I would start a new thread as the topic has wavered toward probiotics...

 

I have read a lot on probiotics-- some sources say that you need to continually 'change them up' to keep a balance of the flora. This article just intrigued me because it named a specific strain that was shown to be beneficial.

 

I really do believe that our son's tics are autoimmune-related. I cannot commit to saying that all TS is autoimmune. I would not presume that, especially when there is such a lack of research and so many possible causes. But in our case when we have his immune system balanced he is symptom free. We still see slight ticcing when there is ingestion of corn and it is usually occasional and is only one movement (like a shoulder shrug or evening eyeblinking). I can't even begin to explain why I think this is. I really have no idea but I know it is true, as we keep careful tabs of what he eats and have seen the pattern re-emerge time and time again as we have weedled out foods that he shouldn't have. Case in point: we would give him a product to sample and then he would have slight nose twitch afterwards (maybe hours, possibly the next day). I would then call the manufacturer of new product and after inquiry find out that the vegetable glycerin is derived from corn. A day or two later the twitch would be gone again.

 

When his gut was destroyed by diet in the beginning he had chronic ticcing and multiple movements. I just recently found a video from his 4th birthday. When I look at that and then at his keyboard practice for his recital 9 months later he looks like a completely different kid. This is why I feel so passionately about it. I know that sometimes I may come across as a polyanna but that really is not my intention. Somebody out there somewhere has got to have a kid who tics too, for the very same reason my son did. Maybe it is only a small percentage, maybe not. I am constantly in awe as to how or why this happened. At first I was naive enough to think that if it worked for me it would work for everyone. Not so. Then I got nervous and was waiting for the shoe to drop. Never happened. Now, as time marches on and I see more and more of the same pattern emerging I gain more and more confidence and understanding into what makes him tic. I just want to share this with anyone that is feeling particularly down or overwhelmed. I don't mean to offer false hope or to presume that this will work in all cases. I always add that disclaimer to every post.

 

Part of our cure in the beginning was using Threelac as a candida cleanse, then we moved on to Healthy Trinity, and fiinally, goat milk kefir (found at whole foods). I have also made my own homemade kefir as well. I started with that before we ever went gluten and corn free. That diet actually helped him quite a bit, and now I can see, through this study, why that may have been true.

 

I just found the article interesting because it confirmed for me the possibility of why these things helped my son. I think a lot of the time we do things and then think that these things have helped the symptoms but in reality it was something else. This study shows that synergistic treatments are necessary to heal the gut in the case of Celiac. Many Celiacs that just try a gluten free diet do not find success. The same would be true for my son's tic disorder if all I did was avoid wheat and corn.... The gut has to have the right balance to do its job. The liver had to have the right support through a low toxin diet. The immune system had to have time to recover from the assault that caused this disorder to develop.

 

This study made me feel hopeful, and also maked me want to commit long term to the use of probiotics as a preventative measure. Something that I have easily dropped and picked up again over the months and years.

 

We live in Chicago and I believe our latitude is the cut off point for D deficiency problems-- anyone as high or higher is at a greater risk. But foks that are indoors all the time and folks that use sunscreen are at risk no matter where they live. Sitting in front of a window isn't enough.

 

We started 'a diet' and probiotics in March of 2007 (heading into summer and sunshine) and continued 'perfecting' the avoidance and allowance food list from May when we found out about the gluten and corn through November of 2007. By January of 2008 we saw a major turn around and have not ever gotten 'as bad' since, even when my son got about 8 oz of freeze pops in 2 days loaded with food coloring and HFCS (his major allergen).

 

Sorry so long.....

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sadly my son doesnt seem to be able to tolerate probiotics anymore (including yoghurt and kefir) as they appear to aggravate his Crohn's symptoms. not sure just why, but we have tested enough now to be sure. he was always able to handle them before (we use kefir mainly but also have used health store varieties)

 

the rest of our family still used kefir and yoghurt

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Caryn,

 

Just curious as to what might be your thoughts (comments) on this: (if of course you have any)

 

Child's lymphatic system appears to be quite active, particularly in her digestive area. It seems that carbohydrate foods that she is eating are being redirected from the digestive system, which means she is either not digesting them, and the immune system is interpreting them as toxins, that it, in turn, is directing the lymphatic system to rid of, or there is an organism of some kind living in her body needing carbohydrates as a food source to continue its existence. There is an embedded virus in her upper respiratory tract, and that is where I suspect the carbohydrates are going---to feed this virus.

 

 

Thanks

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re ts being autoimune..

Caryn, you do know the Dan docs do regard autism as autoimune, right? Our Dan doc did put my son's tics in that category too, as most of you know that the treatments that seem to benefit autism are much of what we are all trying to follow in regards to tics/tourettes. Just wanted to add that. Have you ever discussed this with your Dan doc or any Dan doc?

 

 

 

 

Faith

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Faith,

Yes, our Dan doc said autoimmune. I think we fit in the autism spectrum at the time of dx, but without the high metals. He didn't fit the criteria for autism or aspergers, but he did have what I would consider ADHD symptoms (he was never dxd) and had some gross motor and fine motor issues (still is not 100% but is improving and doesn't need OT/PT). What made us stand out was the Celiac thing-- another autoimmune disorder. But yes, autoimmune.

 

Lyn,

For us the signs were heavily related to gut imbalance. We saw a lot of gut related issues way before any neurological stuff surfaced. Looking back on it I think he was on a slow train. I had preeclampsia in the last two months of the pregnancy. He was colicky at birth and very jaundiced. He was vaccinated as an infant and nursed (contributing to a vitamin D deficiency, as I never supplemented him and was of the opinion at the time that the sun was dangerous and damaging for babies 2 and under). I introduced him to solids at 6 months and by nine months his favorite snacks were what I later learned to be bad choices for easy digestion. I did the usual: cheerios, goldfish crackers, bread, all the brand name finger food baby snacks by Gerber. Also fed mainly jar foods. Most of which had gluten and milk as main ingredients.

He began getting reoccurring infections at about 9 months. He had ear infections, chest infections, croup, weird viruses that the doctor would label 'unknown'. He had a really bad back to back to back episode around the Christmas holiday season where he was sick for almost 4 weeks and on antibiotics twice for what was considered a 'rebound' This was a croup type thing. We were on vacation at the time and away from home. We actually had to put back our flight due to a severe ear infection. Upon returning home our doctor suggested a milk allergy and so we promptly went off of milk but not all dairy. In those days I was very uninformed. He got better and was fine for a while (summer months). You know the rest, as far as how he was diagnosed, etc.... If not, I have written about it at:

http://healthy-family.org/caryn/704 and at:

http://healthy-family.org/caryn/289

So I guess the signs would be chronic reoccurring illnesses and gut related issues throughout childhood that worsen over time. Our son had creamy-colored, foul smelling diarrhea on various occasions. He used to poop undigested food in his toddler years. He used to run low grade fevers from time to time that were inexplicable and dismissed by his ped as normal childhood stuff. He was chronically anemic despite kiddy vitamins. He had a terrible, terrible appetite. I could count on two hands the things he would eat. He had a huge Buddha belly that was hard to the touch. Oh gosh, I can't think of much more right now. But all these things pointed to digestive issues.....

 

Myrose,

 

All I can say is that you may want to try an anti candida diet. We never did do candida testing in the beginning. We went straight onto a diet (Blood type diet) as prescribed by our original Naturopath who did not do any diagnostic testing first. She assumed he had heavy metals. I panicked when she gave me chelating meds and decided to see a Dan Doc first who would do diagnostic testing. Was glad I did as he did not have metals. When we finally tested for candida three months later he tested negative. Even without having had candida, the candida diet is a good cleansing, anti-inflammatory diet. We saw some improvements in our son at that time but we were not truly gluten free and we were giving him very high doses of vitamins and minerals-- so it is hard to know what helped and what didn't. But for your own piece of mind you may want to have testing done to determine what may or may not be infecting the gut. Could be strep, h-pylori, candida, gosh, I don't know what else.

We do not stay strictly on a sugar free diet (or even low sugar diet) anymore. Our son seems to be tolerating the sweets now just fine. He also has very healthy bowel movements and has a great complexion-- loads of good color. We eat organic and raw and do not rely on heavy supplements. I don't think he is 'cured' by any means. I think of it as remission. But we are diligent and strict. I absolutely do not allow any cheating and he has learned to comply and now is an evangelist of sorts at school (which can embarrass at times, especially at class parties). He's only 5, so things may change. His classmates have been educated about it and the girls especially watch out for him. It is cute to see. I have been driven to make his life seem as normal as possible and work very hard to make alternative foods that look and taste as close to the real thing as possible. I always try to duplicate what his friends and classmates are eating. The teachers are very helpful and supportive.

On the up side, my son has not been absent once this year and has not gotten so much as the sniffles. This doesn't mean he won't get sick, he has since the dietary changes, but he is undeniably more healthy than he ever was. We have no issues with ear infections, sinus infections, croup or chest infections, diarrhea or constipation, etc.... Most notably, his mood and behavior is much, much better. He is happy because he feels good. Imagine what you would feel like if you constantly had digestive problems and your body wasn't absorbing nutrients properly. Little kids find it so hard to cope with their immaturity and impulsiveness. Add to that a major digestive problem and you have a child with little patience and a propensity toward tantrums, can't sleep and doesn't want to play with others. That was my son before his diet. I could go on about that--

 

Okay, I've rambled enough.

 

Caryn

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Caryn - I was wondering if you, or anyone else, had an opinion on the enterolab stool test for celiac/gluten intolerance. Our dd and ds have a great aunt with celiac and although our dd has had the antigliadin blood test and come back negative I just have a nagging feeling about wheat/gluten and also am seeing signs of some food type allergy thing going on with ds despite allergy testing for the "big 6" coming back negative.

 

I can't decide if this test is reliable or one of those cashing in things.. it makes sense to me as a lay person but that means nothing!! :-)

 

Any opinions would be welcome.....

 

also back to the probiotic issue we are using a company called HLC from europe for acidiphilus and bifidus on recommendation from a good pharmacist and also florastor (saccharomyces boulardii).. anyone had experionce with these and been happy?

 

thanks

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Loads--

We use that lab. They are great, and their genetic test is non evasive. We have not done the stool test, but gastro docs in general don't like it because they say that it finds stuff when a blood test won't, thus widening the pool of folks for diagnosis. Most think Celiac is still quite rare. Dr. Fine is a pioneer in the field and he is regarded highly by Dr. Rodney Ford, a gastro ped in New Zealand who has a more liberal approach and uses the gluten free diet as a preventative measure. Rather than waiting for damage to the villi he encourages parents to start a gluten free diet w/o a Celiac dx as he believes it is a regressive condition and that the gluten intolerance is there from birth. Whether or not the celiac gene is 'awakened' depends on many things. I emailed him a few times with our situation and he offered very sound advice. He has published several books and writes articles for Celiac.com. Great person who offered me his time (for free) through several email conversations. He has since become quite busy but has a forum now for folks with questions. He has no expertise with tics per se as far as dx and treatment protocol. He only says that kids with gastro issues and tics have seen a reduction in tics after gastro issues were resolved. He did nothing to treat tics, only treated the gut issues (as he is a gastro).

Many celiacs use enterolabs and I have not heard any complaints. Test results usually take about two to three weeks.

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sadly my son doesnt seem to be able to tolerate probiotics anymore (including yoghurt and kefir) as they appear to aggravate his Crohn's symptoms. not sure just why, but we have tested enough now to be sure. he was always able to handle them before (we use kefir mainly but also have used health store varieties)

 

the rest of our family still used kefir and yoghurt

what about using kombucha for probiotics?

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thanks footballguy. We have not tried it and not sure son would be willing as so far every probiotic tried seems to cause increased Crohn's symptoms for him

 

our theory is that for some reason any introduction of microbes, even good ones, seems to cause hypersensitive gut reaction for him. Whether this is related to the auto-immunity things with the Crohn's or something else, we dont know ..... so instead he is just eating very healthily and taking supplements with his daily soy protein/vitamin/mineral shake etc which seems to be controlling any candida problems. he takes monolaurin and candida clear for one week of every month now and, while we do see TS tic waxing every now and then , his Chrohn's really does seem under control, and overall tics and OCD in a stable phase

 

he also drinks a lot of green tea which he feels really helps him overall. interesting that the kombucha is made from tea. I have a strong belief in tea's goodness with my British roots :angry:

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  • 9 years later...

Hi Caryn,

I know this thread is quite old and I'm not sure if you still visit this site or get notifications but wanted to reach out as i just saw this post and how probiotics helped your son. What really struck me was your description of your son.... everything from multiple rounds of antibiotics to "buddha belly" to creamy coloured poop - it sounds so similar to my son.  How is your son doing now?  Are you still giving probiotics and how are his tics?  I was also hoping for some advice from someone (either yourself.or anyone else reading this!) who has "been there".  I tried to view the other two threads you noted earlier in the thread but those links are broken so was unable to get your whole story. :(

I was looking up probiotic use as a means to reduce or eliminate tics and found your thread.  My 2.5 year old son began displaying tics about 5 months ago and lasted about 1.5 months.  He was tic free for a few months but in the last week he was showing the odd tic here and there for the first time (in a few months); yesterday he started doing some pronounced, rapid eye blinking again....and now my worries are coming back and I am determined to try and figure this out.  I want to start him on probiotics but am not sure where to start and which strains to look for.  Any advice? I found a few old threads that say probiotics can actually make things worse so that has given me a bit of pause.  I give him lactose free milk as I think he is sensitive to cow's milk though he seems ok with cheese and yogurt.  I would love to scale back his diet but am trying to figure out how to do that with a 2 year old when I can't reaaon with him that it will help him feel better (hopefully).  

The day before his tics came back we happened to have a neurologist appointment and I asked about supplementing with magnesium and zinc and he said that there is a risk of my son getting too high a magnesium level so advised against it (same with zinc). 

I will likely cross-post in case tgis thread is too old....hoping for some advice!

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