PowPow

Is this a stool or saliva test? I believe e.avium is also a typically vancomycin resistant bug. Did they do a sensitivity on the growth to determine susceptibility to antibiotics? I do not think this can be ignored AT ALL,. Was this done by some "hokey" lab? If so, ask him to repeat it, at a lab he is comfortable with. (I am using his term "hokey" not inferring anything about your choice of lab!) Ask him if he would ignore such a positive finding on the stool culture of his 5 year old! read about VRE species here: . http://www.nphl.org/VancomycinResistantEnterococcus-Iwen.pdf.pdf you will see the e.avium is quite rare, really. in humans, anyway. (I bet lots of birds have it ) my child had a VRE (e.faecium) UTI. Treatment with Linezolid was rough. Major dietary and medicine changes for 2 weeks pre med, 2 week post and during administration.

Ophelia, I am so glad to read all of these ideas that LLM and searching for help are offering you. I know NOTHING about these tests, but it looks like there maybe a lot of room for improvement given all these SNP's! My daughter was put on a boatload of seeming very obscure supplements, when she was under the care of the integrative LLMD rheumatologist she saw before I was even on this forum. Many of these were based on her results from a Genova DetoxiGenomic panel we did (for over $400!!) and I do think the supplements helped. It is something I may address in the future, if I can make room in my brain for it.

I read about the smithereens karaoke Anything else you are noticing? Ivig today?

YAY, qannie47! So so happy to read good news! & laurenk, prayers for you, too.. Drink lots and my daughter says goody's headache powder helps her ivig headache so much, way better then just advil.

If the maoi helps, can you do it and then "if" they need you off it, you can go off for a little bit and then do what they need. That whole MAO- inhibitor thing is terrible , we had to do it for six weeks here for an antibiotic. But if it helps? i pm'd you, too!

I do give 600mg to my teens every so often. I use this dose for pans and other, more common advil uses (headaches, knee pain, menstrual cramps). These kids are over 160lbs, post puberty , ages 15 &up

We saw a doc, Dr Z, in Fairfax, Va. She is a rheumatologist/LLMD. Lat saw her in 2010. Took n very careful, excellent care of my child, but unfortunately,Lyme and babesia were not the root of the problem, so we needed something else. If you need full name, I can PM you.

Not that anyone asked, but my child's depression improves quite a bit with immune tx and steroids. LaurenK, does any imaging ever show any changes in your brain?

I think t.anna's point is what I was asking ( in a round-about way) if you end up under the care of Psychiatry at NYU, will you get the iviG and steroids? some of our kids, if they start on a medical unit, may end up on a psych floor, despite our best efforts. what I was wondering , but I imagine you don't know, does the psychiatry department treat PANS? that is the scary thing, if they end up under the care of psychiatry , we will lose all chance of immunomodulatory tx. of course, that could happen anywhere. not just NYU! That is why I advise everyone to avoid ER's it if at all possible and do everything you can outpatient.

So psych symptoms as a kid, tics only as an adult? I am so interested. Do you have any autoimmune marker(sed rate, crp, antibodies-ana, etc)? Thanks, laurenK

ho sees children that believes in PANS or autoimmune encephalitis with psych symptoms at NYU? also, if you end up with psychiatric care there, will they help in the right manner? I mean do they see this as a treatable illness? so is your diagnosis pandas? was your onset as a child pre-puberty? did they have to fight hard to get paid? do they have to fight after the ivig was done or was this pre authorization? sorry for all the questions.

I think she posting the range, 0.4-4.5.

Make sure they check for anti-tpo antibodies. Though, he is so soon after pex. Is it too soon? They waited at least 5-6 weeks post pex for NMDA testing for my child.

I would try no 1 &2 . If you go to ER,they may inpt psych place her and then she may miss the appt on sept 4. honestly, the ER is not a friendly place for our kids problems. you have made it this far a few more weeks you will be OK. I would definitely call and ask to be placed on a waitlist and have your doctor also ask for sooner appt.

I cannot answer any of these questions, really. I wanted to say that Dr J very, very successfully treated my teenage nephew for lyme. His symptoms were PANDAS-type symptoms. They did not do any of the fancy detox-y stuff integrative docs do & and my nephew did well. there were ups and down but Dr J was certainly a whole more straightforward, simple and CHEAPER than the integrative LLMD we went to. Hope he gets better soon.

Not for our purposes- meaning, in the case of a bacterial meningitis, then, yes I suppose. there are tests for bartonella in the CSF, but I would imagine that someone with bacteria in their spinal fluid would have acute symptoms, as well. If she had a spinal tap there are more things to look for than just those. Is a doctor recommending it? Did you see the geneticist yet?

Nope. nothing new from it. It was to rule out NMDA encephalitis.

Ditto! Awesome, Laure!

Maybe risperdal? It seemed to just bring everything down a notch or three.

Rogers is great at what it does. In our experience, I noticed two things: 1. many of the kids (maybe 90%) had major emotional/behavioral problems (or family issues) AND had OCD. So there will be a lot your child is dealing with in group, roommates, etc. 2. CBT or DBT or ACT is no good when a kid is so very sick. the therapy can treat a symptom, but a medical problem needs medical treatment. Using a crutch will not heal your broken leg, though it will help smooth things over for you for a little while. You need a cast to fix it. Crutches are good and necessary, but the cast needs to come first. you could potentially waste a lot of money and time and effort on something that no matter how hard your child tries, just will not work! Or, it may work, but at the next exacerbation it will all go out the window. These kids cannot help how they are acting.

So, so glad you are getting some direction. I think you will find some answers and, hopefully, some relief for her and you with these new findings and doctors.

Maybe you should find a doc to consider pex. Can you go to Dr L? How long have you been doing lyme tx with DrJ

lmkmip67, interestingly, one of my daughters was triggered by strep two weeks after H1N1 (lab confirmed on both!) almost 4 years ago, also~ October 2009. steroids and then Pex gave her the most relief. Steroids gave her MAJOR relief. Temporary, but major. Have you tried that for him? I know you said Lyme may be an issue, but if it is not THE issue, maybe try steroids. Honestly, we did not even check this child for lyme and went somewhat blindly into the steroids. she got such relief. She is now 2 1/2 years out from any medical intervention, 16 months post intencive CBT and almost one year off clomipramine and antibiotics. She is doing fabulous. Please think about steroids if you ahve not tried them. If the doctor thinks it is autoimmune, I am not sure why more people do not try them. Isn't it kind of a no-brainer? I honeslty feel like too many kids are missing a big key to their recovery when they have a questionable positive lyme test and people are afraid to do steroids.

My daughter had a year of tics, mostly vocal, starting around age 5or 6. She was tested about a year later with a month of steriods and zithro. They were gone by the end of the month. They did not stay away, though, they returmed and now has motor tics more than vocal, about 6 months later. This has repeated itself two more times. She is now 8&1/2 and tics are just coming back again.

Trinity, Have you looked up rett syndrome? Or forme fruste rett syndrome? are you getting the EEG soon? Can she read, is she intellectually normal? Growth normal?