trggirl

We used Now brand Vitamin D3 (as Cholecalciferol from Lanolin). Other ingredients are Olive Oil and Softgel Capsule (gelatin, glycerine, water)

Well I stopped it after day 4 and things are slowly settling down. I'm not totally sure it was the D, but it sure seems like it right now. It's so interesting to me that what helps one person can hurt another.

My daughter has had these since she was a baby. She still does. The doctor always brushed it off as nothing.

Kim, thank you for posting this!! How do you test for pyruvate kinase levels or pyruvate kinase antibodies?

The doctor said my daughter had Scarlet Fever. She had strep and then broke out in a rash later. I don't remember if it was a day or a week. Details are foggy. I just remember going in and seeing the doc and he took one look at her and called it Scarlet Fever. It was very unscientific so I have never felt comfortable in saying she had it. She also developed a terrible body rash from the MMR vaccine.

Rick, if you have time, please post and let us know how the lemon balm is working for you. I'm curious since Chemar's son has had such wonderful success.

What an absolute wonderful post to read. You made my day!! I'm so happy for y'all!!

We tried Intuniv and it did not work for us. My daughter's tics got worse and she developed fears and had strong OCD issues. Attention was not improved. I do think several other parents are using it on the PANDAS forum and having some success. You might want to post there.

Has anyone found that Vitamin D3 increases ticcing. I started my daughter on it today and while I am not absolutely sure, she may be having an increase. It's hard to tell though because we are also having a lot of viruses pass through our house which has stirred things up a bit. It may be the viruses. Just wondering. Thanks in advance!

Happy Thanksgiving!!!!

Hi, I have read this post with interest. Thank you for sharing!

My dd had vomiting and fever to start. Then on day 3, she developed diarrhea. I think she was a little atypical though because our pediatrician was shocked that the diarrhea was not present from the beginning.

pubmed link http://www.ncbi.nlm.nih.gov/pubmed/18695519

Oops, I forgot to mention that I did find a study that says that B2 inhibits glutamate release in rats by suppressing voltage-dependent Ca channel activity. I found that to be interesting.

I just wanted to comment on one aspect of your update. My daughter recently had her vitamins and minerals checked. She came back low in Riboflavin (B2). One of the symptoms of low B2 is cracked lips as you mentioned. My daughter did not have cracked lips but she does have periodic tics. When we started the riboflavin a couple of weeks ago, her tics stopped within a few days. We had also started a gluten and corn diet at the same time but my gut feeling is it was the riboflavin. Anyway, it could have been a coincidence but I did want to throw that out there after you mentioned the cracked lips.

We are corn, dairy, and gluten free. We did allergy testing and she came back sentitive to all these although the gluten sentitivity was lower than the others. We have been on this diet for around one month.

Thanks for this thread and all the recipes. The big problem I have found in all the gluten-free products is they have corn. That is making it really hard.

mom md, Thank you so much for updating. I love reading success stories! I know you have probably posted this before, but would you mind reposting some of his labs such as strep titers, Cunningham, antineuronal antibodies, and anything else you think is important?

Just wanted to add that we had good results with Augmentin and recently Omnicef, but had no relief and even possibly worsening with Azithromycin. You just never know what is going to help or make things worse.

So happy to hear that news!!!

My daughter has tics off and on( raising her arms in the air like she is trying to push up her sleeves and shoulder shrugging) and she repeats her words over and over.

Praising God for your pediatrician.

I always said I would post if I come across something that helps. I have tried to understand what is going on and I have searched for studies. I am just lost on this one. To give a little history, my daughter started ticcing after strep several years ago. Eventually we did the CamKinase II test and it came back as 237. I am convinced that my daughter reacts to many things, not just strep. Last year, after a bad episode of ticcing and brain fog from Jan-April, we started Augmentin. Results were amazing. My daughter stopped ticcing within days and grades went up dramatically. We ended up stopping the Augmentin because my daughter got Clostridium. On July 4th, we had another virus and I could tell things were going downhill again. My dd was a bit more difficult to reason with and tics came back. At this point, the tics were minor. We started her on Augmentin again. We went through August in a holding pattern. I felt my dd was able to deal with things easier with the Augmentin, but it was not the miracle that we had experienced the first time. In September, she got sick again. We don't think it was strep because it was just a one day high-fever incident. This time, my daughter started ticcing strongly, started saying things to herself (in her head), and started the nightmares and fears. For the first time I saw what I think was "classic OCD". After watching "Wizards of Waverly Place" one night, she said she had to say to herself "the zombies are not real" three times in her head or the zombies would become real and get her. I called Dr. B and we switched to Zithromax. That did not help at all. Her fears and tics and OCD seemed to get worse. In the meantime, I found an MD in our area that treated naturally. I was hoping to get help on the natural side to go along with the antibiotics. This doc did vitamin and mineral testing, neurotransmittor testing, basic blood work, and allergies. My dd came back with minor reactions to almost everything on the allergies, low B2, low B12, low D, and elevated dopamine and norepinephrine. This was the second time I had the neurotransmittors checked. Both times NE was elevated. This was the first time dopamine was elevated. So, armed with all that information, last Tuesday we started on a natural diet and B2. I had actually switched back to the Augmentin a few days before we started these things. I wanted to do one vitamin at a time to check for reactions. Within two days of starting the B2 and diet, motor tics were gone. Again, it was just amazing. Her OCD is still pretty strong though. I don't know which of the three helped the motor tics but my gut feeling is the B2. She had been on the Augmentin for several days and her diet was pretty clean to start with. We just made it cleaner. So......I don't know what to make of it. I just want to report it in case it helps someone else. I have been doing searches trying to connect B2 to tics, OCD, CamK, etc, etc. So far I haven't made a connection. I will keep trying though.

Thank you Wombat140 and Chemar! I will check out the links and try to decide what supplement to try!

I always said I would post if I come across something that helps. I have tried to understand what is going on and I have searched for studies. I am just lost on this one. To give a little history, my daughter started ticcing after strep several years ago. Eventually we did the CamKinase II test and it came back as 237. I am convinced that my daughter reacts to many things, not just strep. Last year, after a bad episode of ticcing and brain fog from Jan-April, we started Augmentin. Results were amazing. My daughter stopped ticcing within days and grades went up dramatically. We ended up stopping the Augmentin because my daughter got Clostridium. On July 4th, we had another virus and I could tell things were going downhill again. My dd was a bit more difficult to reason with and tics came back. At this point, the tics were minor. We started her on Augmentin again. We went through August in a holding pattern. I felt my dd was able to deal with things easier with the Augmentin, but it was not the miracle that we had experienced the first time. In September, she got sick again. We don't think it was strep because it was just a one day high-fever incident. This time, my daughter started ticcing strongly, started saying things to herself (in her head she would say ready, set, go over and over), and started the nightmares and fears. For the first time I saw what I think was "classic OCD". After watching "Wizards of Waverly Place" one night, she said she had to say to herself "the zombies are not real" three times in her head or the zombies would become real and get her. I called Dr. B and we switched to Zithromax. That did not help at all. Her fears and tics and OCD seemed to get worse. In the meantime, I found an MD in our area that treated naturally. I was hoping to get help on the natural side to go along with the antibiotics. This doc did vitamin and mineral testing, neurotransmittor testing, basic blood work, and allergies. My dd came back with minor reactions to almost everything on the allergies, low B2, low B12, low D, and elevated dopamine and norepinephrine. This was the second time I had the neurotransmittors checked. Both times NE was elevated. This was the first time dopamine was elevated. So, armed with all that information, last Tuesday we started on a natural diet and B2. I had actually switched back to the Augmentin a few days before we started these things. I wanted to do one vitamin at a time to check for reactions. Within two days of starting the B2 and diet, motor tics were gone. Again, it was just amazing. Her OCD is still pretty strong though. I don't know which of the three helped the motor tics but my gut feeling is the B2. She had been on the Augmentin for several days and her diet was pretty clean to start with. We just made it cleaner. So......I don't know what to make of it. I just want to report it in case it helps someone else. I have been doing searches trying to connect B2 to tics, OCD, CamK, etc, etc. So far I haven't made a connection. I will keep trying though.