trggirl

guy123, if you decide to try anything, I would really be interested in hearing the results. On the ticcing with DMAE, there was a report in the 80's about a girl that was ticcing and given Deanol. Her tics supposedly stopped. I found that interesting.

I really didn't notice any.

We tried DMAE on two occasions. The first time the teacher commented on how focused my daughter was that day. The second time which was a year later, my daughter sat on the couch and read for most of the day. She strongly dislikes reading so this was huge. I would like to give it a fair trial at some point. Right now we are trying Aricept which increases acetylcholine by a different mechanism than DMAE. I'm not seeing anything yet but we are at a very low dose right now. I suspect the doc wanted to use this one because it has a lot of studies behind it. Just guessing though.

It's a urine test. My daughter had it done. She had extremely high Norepinephrine, high glutamate, high dopamine, high histamine, and high GABA. Serotonin was normal but on the low side of normal. Everything else was normal. We never took the supplements. Oops, just saw that she had slightly high glycine too.

I think we are one of the minority on this board that had a bad experience with NAC. My daughter became extremely "stuck" and lost all flexibilty in her personality. And she argued with anything said to her. We were all miserable on the NAC.

Thanks for the update and glad to hear he is doing well. Do you mind my asking if he ever had focus problems and if so, what did you do about them??

Wow, that's interesting!!

Very interesting! Thanks!!!!

I don't know anything about Luteolin but I did want to tell you an experience we had which may or may not be related. B2 is also in the flavin family. My daughter was checked for vitamin deficiencies and she came back low on B2. We were given a bottle of B2 100mg to supplement. This was last fall and at this point my daughter was having strong and frequent tics and had been having them for about a month and a half. She would put her arms in the air over and over as if she had sleeves that were too long and she was trying to raise the sleeves. Anyway, I gave the B2 100mg and by day 2-3, the tics were completely gone. She also seemed to be way calmer. At that point, I realized I had made a mistake. I was only supposed to be giving her 25mg so I cut the dose immediately. She went on antibiotics soon after and the tics did not came back at that time. In January my daughter developed a body rash and I think I have tied it to the B2 so I stopped it , but the whole episode has stuck with me.

Ok, thanks!!! I thought that was what you meant but I was getting confused with how it related to Acetylcholine. Thanks for the link too! I don't think I have seen that one before.

What is CLO?

That's interesting Peg. I wonder why it wasn't sustained?

Oops, my title did not print fully. How many have tried Acetylcholine boosters or Acetylcholinesterace inhibitors? I would love to hear any experiences with these drugs if you have them.

Thank you for posting S & S. I will be very interested in hearing how this works out.

So happy for y'all!!!!!

Interesting. I just don't know what to think about Glutamate in our case. My daughter does amazingly well on Augmentin but did terrible on NAC. I didn't give the Vitamin C with it though so I wonder if that is where I went wrong?? And so far we are struggling on Depakote which should indirectly lower Glutamate. Thank you for sharing. I will be printing this for our doctor.

Ay-yi-yi!!! That diagram is a doozy!! Thanks for posting it Peg!!

Awesome post!!!!!! Thank you for sharing!!!!!

I feel your pain S & S. My daughter has those 99.7 and 99.8 fevers often and I can just see it in her face that she's not quite herself. And the doc just refuses to believe it is anything at all. It's so frustrating because I am convinced it's a clue. Does your daughter ever have high Lymphocytes? We have them on most blood tests. Another clue! And the doc just says its not high enough to worry about. At what point is it high enough to worry about???? We also have the high Camk with normal antineuronal antibodies.

Acetylcholine and acetylcholine receptors are all over the body. Maybe one drug is increasing Ach in one area whereas another drug is increasing it at a different area??? I don't know. Just making a guess. Or maybe it's the difference between stimulating muscarinic versus nicotinic receptors??? I have been trying to find the connection between Camkinase and Ach. There are some interesting studies but I get lost in them. I do think the acetylcholine pathway is an overlooked area in PANDAS and Tourettes for some reason. Researchers seem to stick with the Dopamine hypothesis which is fine, but I wish they would look at other things. I think it is possible that the acetylcholine pathway is important too since many people get relief from L-Carnitine on vocal tics and L-Carnitine supposedly affects the acetylcholine pathway.

I was wondering the same thing Dave. My friend's daughter just started having symptoms out of the blue and she wanted to have the CamK run. I don't know what to tell her since they quit doing the labs.

Thanks for sharing Momcap! Interesting. I too wonder if the mania was from the supplements or the strep??

911RN, would you mind talking about your Depakote experience. We are on a trial of it right now and I am getting very discouraged and wondering if I need to stop it.

Choline would help with acetylcholine. If you do searches, you will see some success at treating tics with acetylcholine boosters in the 1980's. Also studies on DMAE treating ADHD. DMAE also increases acetylcholine supposedly. I have been very interested in this pathway for a long time.

We are on a trial of Depakote right now. At first I thought we were seeing some calmness, but now I think it is making her edgey.