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Not sure if this is what you are asking ( I HATE math) but my family doctor said that 2 SD below the range was significant... which, in my lay brain-- makes me wonder... Why have a range if it does not mean anything???

My child is a pt of dr. l and is on both antibiotics. She is a clear strep pandas kid, but she currently has a active myco p infection.

can't speak for advil and seizure meds but I am trying this right now for my flaring 7 year old & it really seems to help. Can you try it, maybe give a prilosec way before the advil? The study is a great idea, too. You might be able to.fit that in before july. Where are you going overseas? You might be able to find a pandas connection there? Our little latitudes forum is going international lately!!

my (non-autistic) 12 yo is on both zithro 500 mg QD (pos active myco p infections) and Augmentin XR(strep).. from PANDAS doc

ditto on what dcmom said about Dr L. She sees three of my kids who have PANDAS/PANS. I am not exaggerating to say that she has saved the life on at least one of them. not exaggerating one bit. The other two she has saved from mental anguish and tics, but they were not at the most severest point, at least not for very long. She is a great doc. Call today and it may not be until late summer or fall but tell them you live close and will be there in a heartbeat for a cancellation. And yes, Baltimore is "close" to Bethesda in the PANDAS sense of geography. I thought I was traveling far to see her from the far off rural VA suburbs. HA-- I think the first day I was in her office there was someone from Indiana. Try the advil and get abx if you can! Did anyone address that high ASO in Jan? Can you get abx for that - or get a throat culture or titers redrawn now? Of course, strep is not the end-all be-all of this anyways.. best wishes!

I do not think you need to worry excessively about causing resistance, maybe resistance is already the problem? Why don't you stay on keflex (or is it zithro) and add augmentin? They are not exactly interchangeable. not telling you to play doc, but.sometimes you have to. Any idea what is triggering his respiratory issues? could he have myco p? zithro works on that, allegedly;) that could cause an acute throat and resp response. Just an idea. I hope today is better and you get an email response quick . Hugs to you!

just PM'd you

Dr. l visits are in person, 2 hour long and very worthwhile. We consulted with dr t a few years ago and his pricing was quite different. Good luck. Where do you live? Our llmd was very helpful in our daughters case, as well.

Can you contact DrT or Dr L? You may get with Dr. T quicker, I think. I would give him an email or call.

This is so good.. YOU OHIO PARENTS ROCK!! Can someone stick this on youtube for those of us not so into facebook? I just forwarded this to my kids and to my whole family!

My daughter also could describe the old man's, dark voice that talked, yelled at/to her. She was very specific and I think she heard the same voice most if not all the time. I really think (of course, maybe I am just hoping!)that for some kids, this is just a very slow healing process. Like I wrote earlier, we are a year out from IVIG (which really seemed to make no difference) and many months post plasmapheresis (which helped immensely). It has been a very rough, bumpy road since then, but she is calmer, voices and sights are lessening in frequency and terror-factor. The OCD and anxiety is still a huge factor for her. Movements and incontinence issues drastically improved post pex. My daughter also was not on medications at the time when the hallucinations were the most frightening. Antibiotics were ordered- but she refused them.

2 of my children have hallucinations. I have no idea how to comfort them- I just try to be patient and listening. One of the children with the hallucinations is much more severely affected by PANDAS. We are a year post IVIG and 7-8 post plasmapheresis. The hallucinations are decreasing in frequency and are less scary. I wish I had an answer for you. This child was tested for NMDA and it was negative. The hallucinations were both auditory and visual and were very frightening (shadowy people in the hall, hearing a scary voice speaking her name- right in her ear, other similar things. I was very worried for a while that there was another psychiatric problem going on; as she has paranoia (very significant- regarding the FBI & such) and a few other symptoms I have not seen in my other kids (I have 3 with PANDAS- 2 much worse than the third.) The other child with much more moderate and intermittent PANDAS- hear voices whispering to her. They do not command her to do anything and are only frightening in that she knows she is hearing something that is not real. Just wanted to let you know you are not alone. Out of curiousity, are you living in Sweden? IS PANDAS difficult to get recognized and treated there?

just got a call that my pandas child who is doing relatively well was very high for an active myco p infection! I did not talk to doc, he left a message and we will see our normal pandas doc this week and will talk to ordering doc later today or tomorrow. I honestly have ignored the myco p conversations up until this point. he did say they would take her off augmentin and go back to higher dose zithro for 4 weeks. any comments on anything I need to know? what are physical symptoms could she have?

good luck today kim! and, tomorrow, too. not from personal experience, but I haver heard dr s can be a big help,too! glad you are getting in fast! you are definitely a mama bear and are coming up with a plan b, c and d:) thinking of you and post to update us!!!

we do not see dr b. these labs were from 3 years ago, I was just commenting on it. however same child had high homocysteine this fall. I do not think B12 had been tested. What are you seeing from those labs?

I would ask dr b directly about false pos antibodies post ivig. if you do, let us know what he says.

when were those labs drawn? I think antibody type testing can show false positives for many weeks after ivig. they are getting other people 's immune cells after all! one of my other children had a slightly.positive titer for typhoid after ivig. it was part of some panel our pcp ordered for her anemia. we tegarded as a false pos post ivig.

I hope she is feeling better now! These poor kids!! Question...I thought I read somewhere about a rash with little red dots, I have had that on my stomach for a long time. Sometimes they are much more obvious, other times they fade. Right now it's VERY bright red and a few more dots are showing up. Am I crazy, or is this somehow related to coinfections? Look like red freckles. thank-physically the treatment did help. mentally it did not . that is when we went the pandas route. I.do not remember a rash like that, but she had the stretch marks that come and go. the red "freckles" maybe petechiae-.look up images and see.

when did he have.ivig? that could absolutely effect it! I think ivig kind of voids this type of testing for a period if time.

lab corp for.us: neg for.bartonella and other coinfections, cdc pos lyme and babesia wa-1 1:512 my daughter had been sick (night sweats , pain, fatigue) for about 5 months, psych symptoms for about 6-7months before that test. she was treated with mepron and abx and herbals

not that you asked me, .but my daughters titers were.like 1:512 or something. any insight?

never heard about false positives for this, would be interested to hear more. my daughter had this (or at least lab said so!) was tested by an LLMD .she did have physical symptoms, so many it was accurate. maybe it was coincidence..... any one else gave any info on potential false positives for this test? or even links? edited to clarify that we used quest or labcorp not igenex..

I cannot post a link, as I am on my phone, but Dr.Mercola's newsletter today is " hidden cause of psychiatric symptoms". He starts with NIMH and PANDAS & leads in to a discussion of gut health. if any well written PANDAS parents could make some comments at the end of his article, I would be eternally grateful. I have a big PANDAS day ahead of me and cannot think straight right now! go to www.mercola.com

You can stop it after one pill, esp at only 15 mg. that was the dose, right? That does not need to be concern as far as tapering.

As of a year and a half ago.NO