trggirl

For us, it's the worse symptom. It's like her brain is popping and going many miles an hour and she can't slow it down long enough to concentrate and answer the simplest questions. It is very frustrating. I have found that information is going in though. She may not be able to get it on paper, but when her brain calms down, she amazingly knows the material. I do think it might be OCD though.

Thanks Norcalmom!!!!

I know she never said CamK II was exclusive to Strep, but did she say that it was increased by Lyme and Mycoplasma?

I missed this. When did she say this? I think it is so important to figure out ALL the things that cause a rise in CamK II and anti-neuronal antibodies. I am hoping her research is going in this direction.

We have not done it, but thanks for the link.

Thank you for posting! I am looking forward to hearing how your boys are doing.

Keep in mind that Omega's can cause tics to be worse in some kids. I always feel I have to post that for kids with tics because my daughter had such a strong reaction to it.

Hi mythree, I have been considering trying this on my daughter. I would love to hear any observations you have on it if you decide to start it.

I can tell you that for us, we started Intuniv, which is the same as Tenex only longer acting, and we had the same results. My daughter had nightmares and bad thoughts and horrible tics. I think it could very likely be the Tenex rather than the antibiotic causing your problem. We were not on anything else at the time so we know without a doubt it was the Intuniv. And as soon as we stopped the Intuniv, she improved. We then started Augmentin and had wonderful results.

A dopamine agonist means an agent that activates dopamine. A dopamine antagonist means an agent that blocks or works against dopamine.

You may be on to something there especially considering that CamK increases Norepineprine and Glutamate. Very interesting. Thanks for sharing.

What does it mean exactly if the Mycoplasm IgG abs are high and the IgM abs are negative? Since the antibody is not elevated, would these results cause problems with a child? My daughter had similar results so I am just trying to figure it all out. We are trying Augmentin again but I am not seeing the dramatic results that I did last time. Last time she had tics though and it was definitely Strep. This time she got sick on July 4th with an unknown virus and has been very hyper with brain fog, but no tics. I'm wondering if I should try a different antibiotic. I would love to hear how Zithromax works for you in a week or two.

Well, in our case, Omega's have a terrible effect on our daughter. We even have to avoid the Omegas's that are added to eggs and other food. Yet Augmentin had a wonderful and amazing effect on our daughter who has tics, ADHD, and a high CamK.

If you don't mind me asking, what were the behaviors you saw that told you she was going backwards?

For those on Taurine, do you think it is helping and if it is, what specifically is it helping? OCD, anxiety, repeating, tics, etc.?

Caring Mom, would you mind describing your daughter. I'm not totally sure my daughter fits the profile either and your situation sounds similar to mine too with the Clostridium issues and tics. Does your daughter have any focus issues?

That's just awesome news!!!

Here's some information on S. Boulardii and Clostridium for those interested. http://www.medscape.com/viewarticle/405773_3

Melinda, thanks for sharing your story. Welcome! I found several studies that said that S. boulardii was needed specifically for the Clostidium. What I don't know is how high you can push it. The Florastor Kids package says to take one pack in the morning and one pack in the evening. Does anyone know if that is the maximum a child can take?

Several of my daughter's Neurotransmitters were a bit high or a bit low, but the one that stood out was Norepinephrine. It was super high. Dopamine and Serotonin were just slightly low. I have always felt that the Neurotransmitter levels were a piece of the puzzle that doctors should look at. Oh, and my daughter presents as mainly mild tics and excessive talking and ADHD. She does have some "stuckness" but it is not the main symptom.

Thanks Chemar and Peg!

I searched but could not figure this out. I used to click at a person's name and it would list all their posts and I could quickly scan down and read their history. I am always looking for kids that present like my daughter so I can follow their journey and see what is working. Can you do this with this new format? I have found where I can look at all the topics a particular person posts, but not their actually posts.

Just amazing!!! Peg, why don't you write a book. Your story is amazing and doctors need to hear it.

I hope it goes well!

Ok, I'm just going to throw this out there. Probably not correct at all, but I am digging for all possibilities. According to studies, CamKinase II stimulates Norepinephrine. I have also seen in research that "tourettes (ticcy) kids" have high Norepinephrine. My daughter has high Norepinephrine. To metabolize Norepinephrine, you need methionine/ SAMe because they donate a methyl group. So........... Norepi---------Methyl added to Norepi by Methionine/SAMe----------Norepi metabolized If you look at the structure of Augmentin and Azithromycin, they both have methyl groups. What if it is the methyl groups from the antibiotics that are attaching to the NE and bringing the NE down in the body?? Maybe the NE is too high in the body due to the high CamK and the methionine and SAMe just can't handle it. And the result is high NE which results in anxiety, hyperness, "fight or flight", etc. If you add Augmentin or Zith, presto..... methyls are added......kids calm down. Just some thoughts in my head... This definitely goes back to the overmethylation/undermethylation theory, but my daughter never fit into either catagories exactly. Edited to add: Methionine plus cysteine make taurine. If the methionine is low due to being used on all the Norepinephrine in the body, then taurine would be low. Maybe that is why taurine is helping so many kids on this board. Methionine is also a precursor to Cysteine. Again, if methionine is low, maybe cysteine is not being made like it should. Maybe that is why NAC helps so many kids on this board.