trintiybella

I agree that the LOVE technique is ONLY thing that works here! That is what they deserve in my book. Poor babies!

You can tell if there's nocturnal seizures from genetic testing? I thought that would be detected by 24 hour EEG. We're doing the genetic testing with Dr. T. Can't wait for results!

What type of exam did she do other thank EEG's? Thank you

Dr. T. put her on valtrex. I would love to see something good happen for her. I am optimistic. We will see....

You don't think it could be herpes in brain keeping her up? The reason I ask is that recently I gave high dose lysine and it REALLY helped with sleep. She also got pimples all over her body from it. Someone said it could be virus coming out. I also hear that mental illness could be caused by herpes. I stopped the lysine because she was so mean on it. I had herpes on my lip all my life. Perhaps there is something to this???? With all her psychiatric symptoms, I have always wondered about herpes???

We had some more labs done yesterday. I think that was one of them. I had it tested in past too. Just have to find it. I will get back to you.

got some blood work back from labcorp. shows "high" on coxackie and HHV6, which i think is herpes, right? could this be part of why she is up almost up ALL NIGHT???? any advice really appreciated.

I have organized notes (believe it or not) LOL....she has been sick since she's been born. Whatever she has, she got from me. I do have similar symptoms but as debilating as she has. Thanks again!

Got one for August 28th. Thanks for the lead. I'll keep you posted.

Is that Elizabeth Latimar?Just made an appointment with her. Hope that's who you mean.

We see him. Do you know if he able to give script for EEG?

I am going to go to the ER tomorrow and hope that I can speak with Dr. N. Any advice is welcome. This is ridiculous!!!

I need a nuerologist that Is going to be open mined and listen to me?? Any suggestions for Norhtern NJ?? Thanks

Can you tell me which Dr. Bock you are seeing? Do you have a number you could send me. Thanks!

My girl was on 200mg Motrin 2x's a day. She was very agressive in it and only helped a little with getting her to sleep. I lowered it and she's doing much better. Could it be withdrawals with your son?

Thanks so much. I appreciate that.

We see Dr. J. in Conneticut, but he does not speak about probiotics, detox or parasites. I really need to address those things. So right now we see: Doctor J. , Doctor T., Scott S. and Doctor B. (psychiatrist) None of them deals with what I am looking for. She is possitive for lyme and bart and has Cam Kinase of 166. which Dr. T. thinks is PANDAS but there are no other markers for PANDAS. That is what we have to go on. I need someone to pull all of this together for me.

It is so tricky. No positive way to know its strep in our case. I guess we will just treat it and be on safe side. Thanks

Yes thyroid was checked. Thank so much. My daugter has the C677T Single mutation. Is this the mutation your talking about? Is this common with bartonella/pans? Also...I was told by doctor that folate is needed. Are you doing anything else for this mutation. Thanks!

She has 166 on Cam Kinase. Tested possitive for Bartonella. I am attacking the bartonella and covering ourselves for strep too, just incase. (we have no indicators of strep other than 166 on Cam Kinase) She is on Bactrim and Azith. I want to attack parasites because I saw her fall asleep with black walnut oil. I was thinking she just had parasites, but from what I have been reading...It could be parasites linked to the bartonella somehow. I want to deal with cytokine cascade too. And her C677T Single mutation. I want to detox big time. I want to go after viruses too. She can not take a lot of supplements and concoctions that Klinghart gets into. It won't work for us. Need to get her stable first and then MAYBE it will. Thing is I need help and our current doctors don't talk about probiotics, parasites etc... Here are my choices, and I have to research and decide who will help me with the above mentioned list. Dr. Schulaman in Brooklyn Sophia health institue Dr. Lashore-recommended by Dr. J. Duke Children Hosp. Paul Grant Susan Swedo Julie (associate of Buhner Greg Lee Dr. Bock Will you please give me your opinion? Thanks again so much for all of your help. I truly would be so lost without you. You never judge or belittle the numerous confusing posts that make, and it means a lot to me. Having lyme myself makes it really hard to focus at times and help my girl, so thanks!

I was told vitamin C would help with detox, but is this the best thing to use? Thanks

We started high dose motrin. 600mg. 3x's p/d. The first two nights she fell asleep at 11:30pm. Then is stopped working, like everything else we try. She is also very agitated and her thoughts are racing a bit more. Has anyone had a bad reation to motrin??? And she has been having lower (left side) abdominal pain the last couple days, that she just woke from at 5am right now. I would say this is not good for her, right?Too bad, cause it got her to bed at 2am, instead of 6am.

Rowingmom...regarding: the "bacteria being parasitic" Could that be why my child started to sleep a little when I added black walnut oil in for parasites?

Do you know if bactrim and Azith will work to kill bartonella and will it also cover strep? Or is bactrim and minocyline for bartonella and you have to add azithromycen in for the strep???? I am putting calls into all of my doctors to find out on Monday, but waiting two more days, is a life time for me right now. Any advice is appreciated. Thanks

He's still on abx. though, right Anna?