Totally discouraged and unsure ...

[shydee75]

Hello everyone,

 

I'm really discouraged. It looks like it is a constant struggle with my 6 year old daughter. I've taken out all the food that she is allergic to and I'm giving her a whole host of supplements but her motor tics are still there. She has no vocal tics. She is now dairy-free, gluten-free, soy-free, egg-free, salicylate-free (at least, to the best of my ability).

 

Out of desperation, I tried something on Tues, Wed and Thurs. I decided to take off the Super Nuthera (Kirkman's) that my kid is taking because the Bs looked scary. Read something about B6 and tics and 250mg does look really high.

B1 - 7.5mg

B2 - 7.5mg

B6 - 250mg

B12 - 5mcg

 

Wrong move - she started her hand jerk and leg bends on Wed and so, out of fear, I started SuperNuthera again today. Sigh.

 

On top of Super Nuthera, I'm giving her the following. Not sure if this is ok. Doc suggested this but I really trust you more because you are not just recommending things in isolation. You recommend based on your experience and in my eyes, that counts for much :-)

 

 

Morning

- Therbiotic Factor 4 (Klaire Labs probiotic)

- Enzym Complete DPP IV II (Kirkman enzyme)

 

After lunch

- SuperNuthera (Kirkman)

- Magnesium Glycinate (Klaire Labs, 100mg)

- Calcium Complex (Klaire Labs, 400mg)

 

After tea

- Taurine (500mg)

- Glutamine (Klaire labs, 1000mg)

- Magnesium Glycinate (Klaire Labs, 200mg)

 

Dinner

- Enzym Complete DPP IV II (Kirkman enzyme)

- Therbiotic Complete (Klaire Labs probiotic)

 

 

Hope someone can tell me if I'm overdosing my little girl who weighs in at a paltry 17.8kg. Or perhaps, there is something else that I should be giving her? I'm really wondering what else I can do in terms of food and supplements. I may also start on Craniosacral and Visceral Manipulation - got to check on my finances first.

 

This is really taking over my life. I just can't concentrate on anything else - wondering why life is so unfair to my little one. On a separate note, I know I've become an 'uglier' person. I snap more, I grumble a little more and I'm definitely less patient than before.

 

 

Shy

[jennmomofthree]

Hello!

 

First of all - hang in there! When I saw the time you posted I remembered back to the sleepless nights when I was first researching frantically for my six year old son. You are a wonderful mother to do all you are doing!!

 

I wondered if you have done any of the allergy testing for your child? Foods are a big factor for many kiddos but also the environmental triggers can be huge. I am wondering if perhaps there is something that might be triggering her there - molds, outside allergies, etc. When we had my son tested we were astonished to find that he was severely intolerant to flouride. Of course we were giving him a daily dose per our dentist's instructions and he was drinking flourinated water, etc.

 

Just a thought - if you haven't looked into this angle you might want to try. We did testing through Alcat but I also know Great Plains does this type of testing too.

 

As for supplements - we did find that B12 made our son's motor tics and behavior off the wall. We do give him B6 and that seems to help.

 

Hang in there!

[CarolynN]

Hello,

 

First I am so sorry for your discouragement. I know how horrible it feels when you don't feel like you are moving forward. But trust me when I say you are way ahead of the game compared to most parents who are dealing with this. You realize that there are answers that can be found naturally. Have you bought the "Tics and Tourettes" book by Shelia Rogers? You really should if you have not. It was such an encouragement to me to realize there was answers for my son and not to give up.

 

I had put together my theory as to what was ultimately going on with him and why I thought Daniel was reacting with these food chemicals a while back. Here is the link http://www.latitudes.org/forums/index.php?...mp;hl=sulfation and also some follow up links to this post http://www.latitudes.org/forums/index.php?...Carolyn+N\ and also http://www.latitudes.org/forums/index.php?...hl=Carolyn%5C.N .

 

We have been dealing with tics with my son since he was 3. I have posted on here many times about all the supplements he is on. The only thing I can say is he is almost 9 and pretty much tic free now. He is heading into the peak time for tics for his age and with all of the supplements and diet change I truly believe his intestional track and liver are getting what they need now to help process out what he could not do by himself prior which was food chemicals (MSG, food dyes, high fructose corn syrup). It takes time for the body to heal once on the right supplements. So don't at all give in realize that you are on the right track.

 

B6 has been a HUGE part of what helps Daniel. He gets anywhere from 50 mg's to 100 mg's a day. He get the 50 mg's from Bonnie Grimaldi's vitamins TS-Plus. Anyway when Daniel's tics get going I always give him an additional 50 mg's.

 

Speaking of the TS-Plus vitamin for Daniel it has helped him so much. He has been on it since he was 5. I did not realize how much it was helping him until I tried switching to a different product and within a month his tics came back full force. Another time I tried cutting his dose in half, just to save some money, and he seemed fine for a while. Then again I think his body became depleted of the vitamins and minerals, from not getting enough, and the tics have came back. So I realized I could not "cheat" and try to save money. He is on the recommended dose for his wieght now and doing great. It is an expensive product but well worth it. The biggest pain is it is so many vitamins for him to take but it is such a part of his life and he realizes now the benefit of the vitamins which makes it so much easier.

 

Another thing that has been sooo helpful too is Glycine. Glycine helps the neurotransmitters run more smoothly. He gets anywhere from 2500 mg's to 5000 mg's a day. When he is has really bad tics I give him 10,000 mg's for several days in a row. I use Carlson brand glycine.

 

Another product that he takes that has been really good for him is NAC (N-Acetyl-L-Cysteine). I buy the Vitamin Shoppe brand generic form. He currently is on 600 mg's a day along with 1,000 mg's of vitamin C a day. The vitamin C is helpful when taking NAC to help prevent kidney stones from building up from what I have read. Although my doctor told me this really is not too great of a concern. But the NAC helps the body remove chemical toxins and other toxins from the body. It supplements the liver. The vitamin C is important one way or another for many reasons. But one primary reason is to lower histamine levels.

 

Back to the NAC I know of at least 2 other people on the forum who had really good success with the NAC. It certainly would be something to run by your doctor.

 

Have you tried giving her Benadryl or some other anti-histamine to see if her tics reduce? I know I and many others have seen a reduction in tics with Benadryl. Some people, however, will have an increase in tics when taking it but not for most. My thought is if you see a reduction in tics you know that her histamine levels are elevated which more then likely they are elevated one way or another.

 

The other thing that really helps is taking Epsom Salts baths. Use 2 cups of epsom salts in a bath and soak at least 20 minutes. I noticed with my son that I don't see a sudden reduction in tics after the bath it is usually a couple hours later.

 

May I ask what kinds of foods she is eating. Do you buy any processed foods at all?

 

Have a great weekend?

 

Carolyn

[mom2a]

Hang in there! I agree with the other people who have responded...YOU ARE DOING GREAT and ARE AHEAD OF THE GAME!!!

 

My suggestion would be this

 

You have a lot of stuff going on between the vitamins and all the foods eliminated.

 

Sometimes it's worth it to take a step back and introduce things one by one again. Your child may be re-acting to one or more of the supplements. Make sure your supplements are FREE from artificial ingredients and "Natural Flavors"...many people think because it says "natural" it's actually "Natural", it is still chemically made.

 

I know my husband re-acts to Taurine in a negative way. It actually increases his tics. We find a 2:1 ratio of Cal/Mag. usually is best too.

 

Sometimes you just have to step back and re-group....question what you are doing and look at it all again! Us mom's have to be the detectives, how we wish there was a one size fits all solution.

 

Good Luck, don't give up!!