trggirl

Hi EAmom, I tried to send you a message and it didn't go through. I was wondering if your mailbox was full?

Hi Lisa, I really appreciate your post telling what you are taking. Please update if you get a chance and let us know what is working and what is not working.

I'm sorry Emerson. I can't imagine how scary that must have been. I hope you are feeling better today

We used Intuniv which is the same thing only long acting and we had similar results. My daughter seemed to tic more, she developed severe OCD, and she was very spacey. We used it for a month at the lowest dose.

I read one source that said that depakote can increase norepinephrine. I didn't look further though.

Wow, that is fascinating!!

Praying for your daughter Wilma.

Hi Pandas16, This is a little off the subject but would you mind telling me about your grape seed extract sensitivity?? I was reading an article that said that CamK II was activated by reactive oxygen species so I got to thinking that we really needed to work on an anti-oxidant diet. But, when I gave my daughter some applessauce with black currant, I thought I saw an increase in tics so I am worried about trying grape seed extract. Any imput would be appreciated!

That's wonderful!!! So happy for you and your son!!!

I don't know the answer, but I do think yogurt increases my daughter's tics. I still let her eat one a day but I would almost swear I see an immediate reaction.

We did the hair test and had an elevated aluminum also. When looking at the checklist, we didn't do any of the things that caused high aluminum.

JJMom, I would really appreciate it if you would post results!

Peg, did they do susceptibility testing on the strep? Your theory sounds plausible. Can you do some searches and see whether hyperthyroid patients have to use increased doses of antibiotics?

I'm so sorry. I feel your pain! It just makes me so upset with the medical community for being so close-minded. They clearly don't have the answers so why are they so quick to dismiss other possiblities. I feel so strongly that to find the answers, we all have to be open-minded and consider all avenues since we don't know what is going on exactly.

It makes me wonder too. Just thinking aloud, they can find out what antibiotics it is susceptible to. But then I am wondering if it is hiding in places the antibiotic can't reach. Would strong IV antibiotics be helpful? I don't know.

It makes me wonder too. Just thinking aloud, they can find out what antibiotics it is susceptible to. But then I am wondering if it is hiding in places the antibiotic can't reach. Would strong IV antibiotics be helpful? I don't know.

I second the B12 suggestion. Definitely something to rule out.

Hi Eljomom, I hope I did not mislead you. My daughter does respond to antibiotics, but things are far from perfect. She tics, has bad thoughts, has repetitive behaviors, brain fog, etc. We are going through a rough period right now and it is tough. Still, for the third time she has gone from almost unfunctionable to able to get through the day, albeit roughly. Like a lot of folks on this site, it seems like each time is harder to recover from. So, although antibiotics do help, she is a long way from a 'normal' kid even though the antineuronals tested were normal. I wish I knew why the CamK was so high???!!!

Please let me know if you find out anything. Our Camk was high, but antineuronals were normal. We have not gotten a clear answer as to what this means. My daughter does respond to antibiotics. I did talk to Dr. Cunningham at one point and she said that probably there was another antibody that she wasn't testing for that was high in my daughter's body. I would be curious if she still feels that way.

:)Yes, Thank you!

I'll be praying.

My daughter has this also. She also has the red cheeks that sometimes feel like sandpaper. We are not pursuing the Lyme route although I will look into symptoms of Bartonella after reading this thread. Pixiesmommy, please update if your doctor has anything to add.

My prayers are with you.

Please update Nancy on what ever you decide! I can't wait to see results from this study!

Thank you for sharing your story and updating! It is so helpful and greatly appreciated!