Momonamission, has your son tried the Carnosine? Anyone else?

[brett]

Hi Momonanmission, it is Brett. I was just wondering if you have given your son the Carnosine yet? And if there has been any difference? I read about your situation and is sounds so much like mine. This Saturday will be a month of tics and he has not gotten any better. Still on the Tenex so he can function but heartbreaking to watch him and he is so moody and depressed, mood swings within seconds of each other, says his head feels like it is going to explode, refuses to get up and go to school in the a.m. I have to stand over him to get homework done. Wants to drop out of all sports. This is a straight A school lover (he is 9 in the 4th grade), great kid, leader, excellent at all sports, energetic, happy, eager kid. Replaced by this child and it makes me so sad. I am on my own as I am not following neuro's advice to give Orap. I am holding the Zithromax right now waiting to try near the end of the week so I can watch for any effects. He has been no-screens for 2 days, but basically he is the same. I will call a new dr. tomorrow that uses a more holistic approach and does lots of testing for allergies, etc. I just know there is some underlying cause of this as symptoms came on so fast! An explosion of tics. Although he always had little tics here and there as a younger child (mostly coughing, throat clearing). Now he cannot sit still his body jerks so much.

 

So I have read a lot about the Carnosine thanks to Firefly's postings on it. I would like to hear if anyone had any negative reactions to it, or positive as well? Also, my son is 9 years old and weighs 60 pounds, what is the correct dosage? I really do feel on my own, a follow-up appt. on 12/13 with the neuro is scheduled but frankly he just says use these meds and let's see what happens. How does that help? Thank you so much. Brett

[mmazz]

Bret,

 

This is my first time posting to you, but have read your heart breaking posts. The mood described by you that your son is experiencing is similar to what we experienced last year. My little one actually started ticcing last year but the outward personality symptoms appeared earlier, but I did not know what it was. I knew in my heart of hearts that something was just not right but dismissed it as a quirky personality that he would outgrow. But reading and posting here put many pieces of the puzzle together for me. I have found that my son had pyloria (spelling). Although I never had him tested he had all of the symptoms. Pale, no dream recall, moody, dull hair, clothing sensitivity, etc. His overall appearance was quite normal but placing him of supplements and daily fresh vegetable juices for about a year improved moods, appearance and overall quirkiness. Although I am still dealing with minor ticcing, I have a new child. I did do a neurologist but never did anything further. My thoughts were simple, we are what we eat, breathe and do. With the help of a great storekeep at the heath food store, Claire, Cheri and Allison here on this forum and my brother, I was able to SLOWLY put together a life plan for my little one. Healing through nutrition takes time and presents many challenges. The right combination is key and that takes trial and error. Supplements take about three months to get into your system. And with that your body renews cells every 28 days. So once your system is fully detxed and you are providing a healthy base to create new cells symptoms shoud slow down and finally disappate. It has taken your son years to get to where he is at. It will take time to repair what was done. So even though it is tough to watch your son tic and go through these mood swings, you must be diligent in your cause and become the dectective that many posters here have become. It is a long journey, but one worth taking. Although I am not as up to snuff as many posters here, if I can help in any way just post.

 

Be Well:

 

Marie

[mommaonamission]

Hi Brett. Yes, my son has been on Carnosine for 2 weeks now and the tics have decreased about 80% compared to what they were a month ago when all this began. He is happier and more obedient, and much more calm. He is not as impulsive and the rage has all but dissappeared. I contribute this change to a couple of things, but mostly the Carnosine. I know that has made the biggest difference.

 

Three weeks ago this Friday, he was at his worst. Took him to see the premier of Harry Potter (it has been tradition to do so since the first one came out, I was hesitant with the ticcing, but didn't want to let him down.) Anyway, the jerking was killing him, he was bitting his hand to avoid shouting, and his body ached afterward from all of the suppression. It was the longest 2 hours and most heartbreaking of my life. I understand your pain.

 

I am in no way an expert on this, and the tough part is, all children seem to respond differently to different things. All I know is that I have read and read and read some more. I really believe that yeast plays a big part in this. I have him on some probiotics that I picked up at Wholefoods, and some wholezymes. It seems to be clearing out his system and detoxifying him a bit. Also, I use grapefruit seed pills (they make it in liquid form too) and this seems to be a good antioxident as well as supports mental health. I have him on a good multi-vitamin, but will probably put him on a better vitamin B complex. I picked up some indoor allergy pills for allergies to mold, yeast, and dust. After he was doing all of this for a week or so, I added the Carnosine. Within 1 week I saw results in the tics, within 2 weeks, the raging and frustration subsided.

 

I read somewhere that a child of your's size should take 400mg twice a day. I don't think they make it in anything other than 500mg capsules, but the man at Wholefoods said breaking the capsule and adding it to a juice or something should have the same affect.

 

I don't know if you are a religious person, and I would never press my beliefs on someone else. Lord knows I should go to church more. But I have been praying non stop for the last month. I honestly believe they are being heard. My son is getting better with a little prayer and Carnosine. Good luck. I hope your familiy, and especially your son, gets some relief soon. Hang in there.

 

Oh, one more thing...I am going to try and get some Nystatin which is a anti-yeast supplement incase this flares up again. I am nervous about the winter, and him getting sick again. I have read really good things about Nystatin, so look into that if you don't see the results from Carnosine. That is my plan B.

[brett]

Hi Momonamission, thanks for your reply. I was wondering what good multivitamin you put your son on? Because I have stopped giving him that Flintstone's junk and was at the pharmacy today, they told me that the plain multivitamin without any additives should only be started when a child is at least 12 or 13, as the amounts of vitamins in the pill are too high (double what it is in flintstones). So I thought I could split it in half if that is the case. But if you know of what brand/kind and where to get it I would appreciate it.

How did you know what types of natural things to put your son on? It just seems that there are so many I don't even know where to begin. What did you start with? I appreciate all of your help. Brett

[Chemar]

Hi Brett

 

I think I saw on one of your other posts that you are going to be seeing a physician who specialises in natural treatment? I really would highly commend you for that, as it really can be overwhelming and sometimes also counterproductive to try to formulate a correct treatment plan and correct doseages etc without qualified guidance.

 

Metagenics make a range of good children's formula supplements

http://www.metagenics.com/products/catalog...p?type=2&val=32

[mommaonamission]

Hi Brett. I don't know the name of the mult-vitamin I have him on. It is actually still a chewable children's vitamin shaped like a heart (he didn't like that part.) I picked it up at a place called Vitamin Shoppe in Round Rock, Tx. I don't know if it is a chain. I will gather the labels tonight of the stuff I have him on and post it for you. I know everything else I have him on, I picked up at Whole Foods, including the Carnosine.

 

I was exactly in your shoes a month ago, shocked and overwhelmed with all of the information I was finding. It seemed like the most common factor in everything I read, was how important it is to have him on a vitamin B complex. You should definitely ask the nutritionist you are going to see about this. Also, I kept reading positive things about Grapefruit seed extract.

 

"The greatest benefit is due to it's multipurpose (broad spectrum) effect. It is effective even if the causes of the infections are known, unknown or misdiagnosed. Grapefruit seed extract naturally detoxifies, enhances and supports the immune system." "The important substances have an antioxidant action and can neutralize free radicals that damage cells and cause a number of illnesses." It also assists with candida/yeast overgrowth.

 

I think yeast and allergies play a major role in my sons tics. Before the PANDAS episode, he always had little tics that were small enough to overlook. Right before the PANDAS, he was sniffing constantly. I now know this was a tic, but he also had frequent headaches, usually when I did. I get horrible sinus headaches from mold. I assumed he had a bad allergry problem. I picked up some allergy pills labeled for "allergies to mold, yeast, and dust." I also put him on some probiotics to cleanse out his system. I know this has helpled eliminate some of the yeast.

 

After researching Carnosine, it just seemed right for my son. I think the catch phrases for me were:

 

-potent super antioxidant

-studies proved it's aid in Neurological and psychiatric disorders

 

That is all I needed to know. I just read alot and researched the internet countless hours. Spent allot of time in the vitamin store reading labels. I know my son has never been a sickly child, but that something got twisted. Something was thrown out of wack when he was sick, and on antibiotics. I know that antibiotics kill the good and bad bacteria. I think there was allot of yeast present, and his body wasn't fighting it off, and it was triggered. You know your son better than anyone. Think of little things that concerned you in the past. Put it all together, and you will find a way to beat this. I will post later tonight with the names of the supplements and vitamins I have Kevin on. Take care.

[brett]

Thank you momonamission! I will look later for the information you post. Brett

[brett]

Hi Cheri, thanks for the vitamin website, it is very helpful and I bookmarked it. I found a homepathic practice right near my home, I will call them tomorrow. I used one of the links off of this website to find it. It took some work! They are not on my insurance plan, I wonder if they take insurance at all? I guess I will find out. Thank you again. Brett

[mommaonamission]

Hi Brett. Here is what I have my son on at the moment...

)

-multi vitamin: Nature's Plus chewable Love Bites (mineral supplement)/bought at Vitamin Shoppe

 

-probiotics: Jarrow Formula Jarro-Dophilus + FOS (probiotics for all ages) / Wholefoods

 

-enzyme: Wholezyme (free of wheat and gluten) / Wholefoods

 

-grape seed extract: Now Grape Seed vcaps (antioxidant and supports brain and nerve tissue)Wholefoods

We alternate this with Grapefruitseed extract drops / Wholefoods

 

-allergy tablets: RELIEF Indoor Allergy for Mold Yeast and Dust / Wholefoods

 

-carnosine: Jarrow Formula L-Carnosine (synthetic version of Carnosine) / Wholefoods

This is exactly what was used in tests on Autistic children with proven results in their overall mood and symptoms. The recommended dosage in this study on an 8 year old child was 400mg. I would still consult with the nutritionist about the dosage first. But I would definitely try this on your son.

 

Good luck and God Bless.

[brett]

Momonamission, thank you so much! I will bring this when I have the appt. with the homeopathic dr. I really appreciate you taking the time to post that for me. My son Jesse is in such emotional pain it just kills me. Today was a very tough day, he is so depressed and moody, feeling so unlucky and alone, cries at the smallest things. The no-screens is hard for him, he is used to watching a lot of tv and that definitely distracted him from his symptoms. But I have to say he is calmer without the tv. He realizes this as well. While I don't think the screens are causing his tics (as he continues to have all of them even 4 days without screens), it has helped us to reassess the role tv plays in this house. Things are much calmer and quieter and we will modify for sure once tv goes back on again. I started Zithromax today and am giving it a 5 day try to see if he improves at all. We will see. Sometimes I feel hopeful, then others I think, what if this never goes away and he has to live every day with his body twitching and jerking? What must it feel like to not be able to be still for 4 straight weeks? To feel different from everyone else? I know you know what this feels like.

Anyway, thanks for your help. I will keep you posted. Brett

[mmazz]

Hi Mommaonamission:

 

Just a thought, the no screen thing takes time. I believe Claire said as much as a week to see any change. Also, communcation is a must. THe emotion can bring on more anxiety, that leads to more ticcing. Take him out for a bike ride, or run. Board games to pass the time is a great thing. No TV brought our family much closer. Something I would have not experienced or benefited from if I not been forced to shut the TV off. Remember this is a slow process and we are a society that thinks that things can be solved within the time of a sitcom. But the truth is that your joureny will take months of trial and error and you will gain ground. Before you know it you'll say WOW it's been 10 days since anything. There will always be set backs, but remember that your child is healthy and needs your unconditional love to get him through this. Your anxiety, even if hidden, does show through and once you are comfortable with him, he will be confortable with himself.

I hope that helped?

 

Be Well;

 

Marie

[Spring]

Hi Brett,

 

I have been reading your story and didn’t get chance to post due to my recent work schedule. I totally understand your feeling. It is heart breaking. My son (currently 9 years old, a 4th grader) has been on homeopathic remedies for 2 years. The remedy definitely helped him. He’s been taking UNDA numbered remedies. However, homeopathic is not covered by insurance. I’m not familiar with PANDAS, so I can’t give much suggestion for it. In my son’s case, I believe that heavy metals (in particular mercury) are the major contributors to his tics. He also has much nutrition deficiency. Currently, besides the “natural chelating” vitamin program monitored by our DAN doctor, he also takes the remedies to help his body detox at the same time. For my son, TV, computer, electronic games, bright light, some sports and excitement are triggers for his tics. It’s really a trial and learning process. I would suggest taking small step at a time. Don’t try making too many changes at the same time. It’ll add more stress to the kid. My son is a very sensitive child. We had very difficult time to start the vitamin program in the beginning. Due to his adverse reactions, we had to stop the supplements many times in the middle and restart over from the beginning with small dosage. It takes time to build up. Although it is a lot of work and the road is not easy, there is a hope. Please hanging there…and don’t be hesitating to ask questions!

 

Wish you the best!

[brett]

Thank you Marie and Spring for your posts. I am taking all of your words of wisdom into consideration. It seems to be very important to take things slow. That is hard for me to do, but I am trying. We are trying to be encouraging and upbeat for our son. He knows he can talk to us anytime. It is draining watching all of this unfold. I found a good pediatric immunologist/allergist (on my insurance plan!) and got an appointment for Monday. I will have him tested for food allergies and blood tests for other things as well, whatever the dr. recommends. It is a start. I can then take those results to a homeopathic dr., I have found one in my area and will make an appt. after I get results from these tests.

To everyone reading these posts, all of your advice really helps and definitely makes me feel less alone! Brett

[mommaonamission]

Hi Brett and Spring...

 

I think the allergist is a great idea. I plan on making an appointment for one soon after our visit with the Neurologist on Thursday. This will be our first appt with the Neuro.

 

Brett, something again you might consider if you strike out with the Carnosine is Nystatin. I have come across it in many articles and it appears to be highly recommended and effective for yeast control. I plan on using next time he gets sick since I'm sure the tics will magnify. I think you need a prescription for it, and you might be able to get it from the Nutritionist.

 

Spring, I believe my sons TS was brought on by a shot containing Mercury that I got when I was pregnant. I know there is a strong link between the two, and there is no history of TS in our family. It is only logical. I think that is why the Carnosine had been so effective for us. It removes toxic heavy metals from the body among other things. You might consider it for your son. It has been really good for mine.

 

You are all in my thoughts and prayers...especially your little ones. Take care.

[Chemar]

PLEASE do thorough research on Nystatin before deciding on whether you want to use it for yeast elimination. It is not necessarily always the best choice for everyone, and some do better on Threelac or Capryllate

or, like my own son, on specific antifungal homeopathic remedies, in conjunction with capryllic acid.