New here - please help ...

[shydee]

Dear Caryn,

I'm new here but I've been following your forum for some time now. Every time I feel down, I come here for some relief and hope (you inspire a lot of that).

Anyway, I'm at my wits ends. My daughter started tic-cing pretty horribly in Jan 2009 (she was 6 years old then). She was jumping, doing a hand jerk, blinking , and jerking her neck. So, to cut a long story short, we brought her to a neurologist who didn't do very much. We then brought her to a doctor who works with autistic kids. My child is not autistic, btw. He recommended Kirkman's SuperNuthera, calcium supplements, glutamine, taurine, magnesium, Klaire Labs' enzymes and probiotics. We even did an IgG test and an Organic Acid Profile test (The Great Plains Lab). 

Her results are as follows:
OAT - high 3-oxoglutaric, high oxalic, high VMA, high glutaric and slightly high uracil (taken on 7/15/2009)

IgG - morerate Dairy, High Gluten, moderate soy, very high egg (taken on 2/28/2009)

Our neurologist also ran the following tests:
 Caeruloplasmin (Wilson's disease) - no issue
 Thyroid screen - within normal range
 Anti-nuclear Ab (Autoimmune disorder) - no issue
 Peripheral Bld Film - no issue
 SLE Panel (lupus) - no issue
 ASOT (Streptococcal infections) - within expected range

As a super-concerned parent, I decided to take away gluten, dairy, soy, eggs. I started the supplements and yes, the tics lessened in severity in 2009. In January 2010, her blinking tic returned with a new-found vengeance and then seemed to taper off after I changed her second language in school (stress and excitement seem to have an adverse effect on her). Things seemed to get better for some time and so, in May, I decided to do away with the supplements. I took away everything except the probiotics and enzymes.

Guess what - her tics came back in September and she has a really nasty neck nod/jerk/shake. So, I started the supplements again. I've realised though that the Supernutera I am giving her now does not contain Vtamins A & D. The previous one had 250mg B6, but this one only has 25mg. I've added Doglas Labs B6 (50mg) to up the dosage. It's still way below the 250mg which I gave her last year.  I used to give her 600mg Calcium and 300mg Magnesium, but since I've just started again, I've only given her 300mg Magnesium and 175mg Calcium. Wonder if the ratio is the problem here. I haven't included the Taurine and Glutamine as yet. I've been doing this for about three weeks now, and I still do not see any improvement. I can't bear to see my little girl go through something like that. We're still gluten-free, dairy-free, egg-free. I do sneak in some soy now and then. My husband and I do not have Tourette's OCD, ADD ...

We do not live in the US (sometimes, I wish we did - we don't have Trader Joes, WholeFoods here). We live in Singapore, and it's difficult getting vitamins that are gluten-free, dairy-free, soy-free ....  And even if we do, they are super-expensive. The doctors we've seen seem to scoff at our protocol as well. I don't really care about what they think of me and my 'quack' ways. I'm just going to do everything in my capacity to avoid the medication route. Most importantly, just like everyone here, I want my child to make the most of her life - I'd like her to have a happy and fulfilling life.

I've read your success story and I've still got some hope running though my veins - thanks for giving all of us hope, Caryn. You mentioned that Pfeiffer Treatment Centre came up with a great baseline for you to work with. You then did a whole lot of tests to rule out issues. Well, my husband and I are thinking of taking a trip to the US in December - you know, anything to help my little child. Would you be able to tell me certain specifics eg: recommended tests, doctor's name at Pfeiffer, etc. It's going to cost us a lot of money and time. We'll have to psych my child up for this trip, and we really hope to do things right.

Sorry about this lengthy story - my child is right. I talk too much :-)


Shydee

[Caryn]

Hi Shydee!

The Pfeiffer center sees a lot of patients from around the world. They are non-profit, I believe, and do not accept insurance. Their fees are reasonable and they charge less for many labs that cost more elsewhere. But they do not have a high success rate with Tourette Syndrome. When we went the fees were around $1000 for everything, consultation, labs, follow up. Their vitamins cost $76 a month, but you could use your own too. They are beneficial with Autism, OCD, ADHD, and Schizophrenia. They have a form for potential patients to fill out online and send in to them. They review it and then will tell you whether they think they can help you.
I think you should start there.

What is your daughter's diet like specifically? On the OAT test high 3-oxoglutaric means there is a yeast overgrowth issue. You may benefit from a very strict anti-fungal diet. This would mean using supplements that kill the fungal cell walls while eating foods that 'starve' the fungi slowly over time. If your daughter is eating things with yeast in it and eating sweets then she is still feeding the fungal organisms. They live in colonies in all our bodies. They overpopulate when the person's immune system is compromised (sometimes through overuse of antibiotics) and can cause various symptoms. In my opinion (and from my personal experience) overgrowth is hard to kill and hard to keep away. It seems like a strict diet will kill them off and then when you slowly start to add back certain foods (like sugar) you don't see the symptoms, so you keep doing it until about 5 months later and the symptoms are back again.

You may want to start with an anti fungal diet before making arrangements to travel to Pfeiffer.

Great Plains Lab indicates that high oxalic acid in urine is usually present in candida patients. Candida is a specific kind of fungus, so your OAT indicates likely fungus as a cause.


Another thing to check into is Lyme disease. There is a high correlation with Lyme and neurological disorders (and it can be present in people with fungal problems, too, so it is good to check out.) Lyme is caused by a tic bite from an infected tic. It is a bacterial infection but it is not the same as Strep, so the normal strep results do not mean there isn't a problem with Lyme.

I do not have personal experience with Lyme, but I have learned from other Lyme parents that special diets are helpful treatments for them as a way to heal the body and kill the bacteria. They also rely on antibiotics (which can cause fungal problems) to get rid of the bacteria. In their case, the antibiotics are necessary. So this is why I suggest you look into it.

My youngest son had a systemic fungal infection last year and it caused eye blinking and shoulder shrugs. We did a very strict anti-fungal diet and because we used a higher dose of medicine it caused a strep infection. So then we had to do a course of antibiotics. After the course we continued with the diet for another 3 months. We now have him on a strict gluten-free diet and he is fine.

[shydee]

Thanks for your advice, Caryn. Couldn't reply earlier - too many issues to handle over here.

I might just look into the candida and yeast overgrowth issues. Any recommendations as to how to kill the overgrowth? I've heard of Nystatin but I've also heard that the die-off effects are really bad. How long does die-off last, by the way. Could you recommend a supplement that was successful for your son? I know my daughter will just kill me if I take away her sweets - after all, I've taken away practically everything that regular 7 year olds eat. Is there some thing that can be done bit by bit?

Just a question that arises out of panic - if it is not a case of overgrowth and yet I try to kill it, will there be any adverse reactions? I'm just so afraid of rocking the boat too much, you know.

I've just been reading about methylation pathways - does any one have any thoughts on this? Is prolonged use of Enzymes / Probiotics recommended? I've been reading so much that most of the time, I end up getting confused and irritated with the contradictions. Sigh ... I know there's bound to be light at the end of the tunnel, but it sure is dark right now.


Cheers,
Shydee

[Caryn]

shydee,

You can use over the counter or nystatin. Our doc mistakenly prescribed a higher dose for our little guy. According to his height and weight the recc dose should have been 1/2 a cap but our doc said use a whole cap. In hindsight I think we should have done 1/2 a cap. We saw die off. He then got sick w/ a bacterial infection afterward. Just quickly because I have to run and collect the boys from school--

Stevia was our sweetener of choice. We also used honey. The sugar cravings do stop after 2 weeks. Honest. The cravings are a possible sign that it is fungal. That is normal. The probiotics and enzymes are also important to use too. The probiotics put good bacteria in while the fungus dies. It helps to keep the system more balanced. Just take your time with it and go slow. With our first boy it took 1 1/2 years to get his body in balance. We never completely eliminated the sugars. With 3rd born it took 3 months but we hit it hard and killed it fast. Now we maintain but we don't do all the supps and limit the sugars like we used to. We plan to do the anti fungal every spring for maintenance with the entire family.

No adverse reactions to killing fungus other than doing it too fast and getting die off for a few weeks to month after. I believe in methylation pathway science. It is my personal feeling that once the body is in balance it does a great job of healing itself w/o the need for continued supps. Just our experience. But the supps were vital in helping us get there, because at his worst my 1st child relied on them to just function. I also believe that in our case there was some metals issues-- although I can't prove it now. I think when the body chelates over time that things balance out too. We used NAC successfully with both children when they erupted with ticcs after vaccine injuries. I myself had 13 metal fillings when preg and nursing the boys. Doc now things that may have contributed. Now they are gone, TG.

Just take it slow and steady. If you do nothing but start to include a daily dose of pure coconut juice from a fresh coconut you are doing a great natural anti-fungal thing for your daughter. I actually did that for #3 son for quite a while. It is a wonderful nutrient source and strong anti-fungal (great for oral thrush too). Tastes good too. Try that for starters with your probiotics/enzymes and sneak in the honey in place of the sugar, all the while cutting back on the sweets. See how she responds after a few weeks.

[smileg8]

I am also new here.. My son started to have a wiping of his face when he was four. Since then it has been from one things to the next. The current one is a sort of exagerated eye blinking. It was going on constantly. After reading through your forum, we went gluten free (we were already dairy free). .It has honestly been a HUGE difference. I just need to know what direction to take fom here. How long should i do it. I need more food options to give him. I am trying ot keep the sugar at a minimum so I feel very limited. Also we are a NUT free home, as two of my other children have nut allergies. Help.

[Caryn]

Just about all families find that corn syrups are especially aggravating to the ticcing. Artificial colors do that too. I believe that inflammation somehow contributes with the ticcing. Wheat and Milk are highly inflammatory. If you read Dr. Blaylock he reports that artificial flavors, colors and preservatives are neuro toxins. It is hard to eliminate everything, especially the sugars, but when they are eliminated the symptoms lessen.

At Halloween we let the kids go trick or treating but give 'safe' alternatives to our neighbors to give them when they come to the door. We then ask them to 'donate' their candy to 'the green goblin' that night. He leaves them a present instead. It works GREAT.

It is also helpful to keep an informal record of foods eaten and possible reactions. You will see a pattern over time and your child will also start to connect it too. This is helpful. It is all a big guessing game, really, and each child is different. In our case exposure to a color or high fructose corn syrup would cause ticcing within an hour or so and it would last 24-48 hours. If there was a lot ingested it could take longer. When we cut out all the artificial stuff and corn (in addition to wheat and milk) we got a symptom free kid. In a perfect world there wouldn't be cheating or slip ups, but in the real world there are. So when tics would start after an exposure we would immediately look at the ingredients and try to figure out the culprit. We learned that my son had to avoid citric acid too this way.

So don't give up, and don't strive for perfection from the start. This is a long slow process. My oldest has a very high threshold now and we still don't see tics. I believe that when his leaky gut healed many other things strengthened. We also stopped vaccinating. I believe that helped his immune system too. We may vaccinate again after age 10, when we are confident that the celiac is in check and he has ample size and many years of good health behind him. I just don't know for sure yet. He's only 7 1/2.

Have you tested for celiac? If not it may be a good idea. If your child has celiac then it requires a gluten free diet for life to maintain health.  

[shydee]

Hello Caryn,

Sorry that I haven't been coming by - too many things going on at the domestic front.

This whole month has been terrible. Dd has been eating like crazy - anything and everything. You see, it's the holidays and people come by with donuts, pizzas, yoghurt (all with gluten/dairy). Sigh! She currently has a nasty hop and shuffle. Think it might take her a couple of weeks to go through this bout. She's been having this for the last month - wonder why this cycle is lasting so long.

Anyway, what are your thoughts on Candida Clear by NOW? Have you tried Natural Calm - I hear that it is quite good. You were saying that you have utilised many natural treatment options to boost seratonin naturally in the body. Could you share some of these treatments and perhaps, you can also let the rest of us know how we can get the liver to function better. Thanks for sharing your research with the rest of us, Caryn

If you remember, I was thinking of doing some tests. Could you recommend me some to start off with? I did Great Plains OAT testing and Food sensitivity in 2009. Currently, I'm thinking of checking her neurotransmitters and her yeast/candida and metal toxicity levels. I don't live in the US, so I've got to see if there's a doctor to do it for us here.

Btw, I've heard that when yeast dies off, the reactions are horrible. Did Tigger go through this? School will start soon and I don't want to create a horrid situation for her either.

I feel like I'm going round and round in circles - it's been two years now and we still have not made progress. I hope to be able to come here one fine, sunny day and share some wonderful news but I seriously wonder when that'll be. 

Cheers,
Shydee