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We went to usf in 2012 with one daughter, who had already been treated thoroughly and was still hanging on to some OCD. It was an excellent experience. We did daily CBT for three weeks. Highly recommend it if child is willing! We saw dr horng.

I agree.Also, there are many experts who feel that positive myco p. could be a "ringer" for something else-another bacteria, antibodies, auto-antibodies or even something totally harmless. So perhaps, instead of lab confirmed eradication, a thorough effort at treatment (whatever that may be) should be attempted & then after that, move on to more definitive culprits. I am not suggesting personally to mdmom, just pointing out the possibilty of false myco p. results.

Wrong thread, sorry

My kids have started at 60 mg /day for a week then 40/day a week and so on down for a month or 6 weeks. This would be age 12-15 @ 130-170 lbs. Younger (6/7y) would start at 40 mg or 30 mg. We never saw an improvement until 10-14 days.

stopping her antibiotics for few days is not going to create irreversible damage or kill her. Poor kid.

Maybe she is right. She is the one living in her brain. Maybe give it a break. you have given it a good try, maybe give her a few days off. if its not obviously helping give her a break. Is She going for testing next week?

excellent advice, nickel mama. even though everyone seems friendly and "on your side", their professional careers could be on the line, as they see it.I'm very concerned this whole situation could implode, t.anna.

10-14 days for my kids.

My daughter would listen to music , watch movies at the same time. Risperdal would help a bit. What does Dr N say? if she is supposed to have testing by him next week, I wouldn't change anything, medication wise.

My daughter had a PICC for lyme tx. Insurance paid for line no problem. Though due to lyme diagnosis they only paid for abx for 30 days. We paid for several months out of pocket. She did have a CDC pos western blot after massive oral abx. she was going to get a central line placed in her chest for monthly infusions last year, but she had a major downturn night before and we physically could not get her out of the house. Insurance did precert that also. It was ordered by neuro for encephalitis.

Could be either. That is why this whole thing is such a journey to treat. Glad her labs and symptoms are clearing up.

This is horrible. I am so sad for your family. i am confused, did they call cps? Don't you have a new direction/doc lined up in a few weeks? maybe that can help legitimize the path you are taking and buy some time. Glad you handled it so well.

My daughter was cdc positive lyme and babesia wa-1 at onset in 2008 & 2009. All treated by llmd without significant improvement. Whether caused by or coincidental, she is now dealing with an autoimmune disease. Positive antibodies (rnp and antiphospholipid) and very successfully treated now with immunesuppression and ivig. Have you tested for signs of autoimmunity?

Just a little hope for you, trintiybella- my daughter was very much like this. I cannot tell you the number of times I had to drive to the convenience store to get food or drink or even just to drive her around in the middle of the night- she would blare music, yell, no seatbelts, windows down in snow or rain. It was nightmarish. She would awaken me, literally prancing side to side saying over and over "I' m bored" . I knew that was my cue and up I would get and drive all over. I do not think I could live through it again. However, after much immune tx and time, she is wonderful. Now, I am up at night, waiting to pick her up from basketball practice. That was the hope part. Now for advice, I would also say to try advil and wait as patiently as you can for that testing from Dr n.

No. East coast . We travel to MD & NC for care.

Doesn't Dr N at NYU have a treatment plan? or a plan for his testing? Many parents on here would sell their right arm for that! Stick with his program. Constipation can be caused by many things. What does the GI doc thinks is causing it?

pm ing you

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maybe~ in milder cases- maybe not as encephalitis, but as an autoimmune condition perhaps. Just an idea. I think, all psychosis has a physical cause, that must be determinable. We just need clinicians willing to work to determine it. I wave my AE flag at every psychosis that crosses my path...

so Hopkins has been checking Cunningham's test on PANDAS kids? how did we all miss this?

Maybe not just infection (might get some cross eyed stares from many docs, but how about checking out Aealliance.org. And see if that video (first half of grand round video-under clinical tab at the top ) is familiar enough to your brother

croatianmum, I cannot imagine trying to treat this outside of the USA. I had a horrible time, even with excellent insurance, ideal geographic location, believing doctors, both spouses in medical profession, etc.. You have my utmost respect. hopeny, I am sure that your (and others') lyme posts have helped many more than one or two kids. Honestly, I do. I just want to show another, possibly equally effective, route. Thank you for the smiley face at the end of your post~~ I hope we are all still forum friends

SLE- systemic lupus. What are the cell marker studies? So , the way I understand it: ANA shoes positive antibodies against your own cells. Depending on whcih pattern is shown, it gives a clue as which antibodies are present. So my daughter's doc knew where to start looking to ID the antibody. Does that make sense? Several other docs had kind of shrugged off her moderately high sed rate and pos ANA saying "lots of the normal, healthy population has those"- yes, but the deal is: my daughter was not normal or healthy. she is getting IVIG (1g/kg) ; high dose solumedrol monthly for 6 months; cellcept (oral med) daily still on Augmentin form PANS doc (1000mg XR twice a day)

My daughter had positive ANA; speckled also. Some further rheum workup led to more antibody testing. She has positive RNP antibodies and positive (on multiple occasions, now) for anti-cardiolipin antibodies. Rheumatologist feels this is (conclusively) the cause of her prolonged, relapsing (after tx) illness. The RNP antibodies are specifically related to the speckled pattern positive ANA. ~ though I think there are a few other antibodies that cause the speckled pattern. It is associated with SLE (of course, neuropsychiatric lupus looks a lot like PANS!), MCTD and other disorders. I am seriously hoping that the consistent and high-level treatmemt my daughter is getting now will prevent any progression to other organs, as in MCTD or SLE.

Croatianmom, Sorry to hijack your thread and your question about pex. What I was trying to say to you in my first, very brief post- was that if you have some "proof" that there is an autoimmune response at play (and the reason for the proof is that pex is very invasive with some potential for danger- you would not want to do it on a "hunch")-- If you have some "proof" of autoimmune response (i.e- positive response to steroids, pos ANA, pos dsDNA, elevated Sed Rate, there are many other possible markers) and you have the oppoutunity for pex~ GO FOR IT! best wishes for your son.