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My daughter also has markers for autoimmune disease and just passed her 5 year anniversary of severe PANS onset. I am happy to report that after a few consistently spaced IVIG infusions and cellcept (has this been considered with the autoimmune encephalitis diagnosis? ) she is really doing well. She is scheduled for monthly ivig for at least 6 months. She has had infusion s before but never consistent ly. Also, plasmapheresis helped immensely, but just did not hold. What markers does your child have? Mine is 15 years old with high sed rate, post RNP antibodies and cardiolipin antibodies. This is all consistent with autoimmune encephalitis, which is the diagnosis our out of state docs gave her! I think you are on the right track, bhenry!!

What are your symptoms? Perhaps lyme is not a factor , or not THE factor if your illness. Have you had a thorough workup by a god rheumatologist?

My 6yo had t & a for central and obstructive sleep apnea. Recovery was rough & stinky (breath smelledlike rotting flesh!) but the surgery helped her behavior dramatically.

I suppose that a suppressed immune systme must make SOME antibodies or we would have an AIDS-type situation or a boy in the bubble, right? I imagine the efficiency of the vaccine would be weakened, from a "suppressed" immune response. hard to say. hard to know what to do. She is in school now, exposed to illnesses. If she was still room bound by PANS, than I would not have to worry about it!! of course, I will take the worry over a flu shot vs incapacitating OCD any day!

I am required to get one for my work & my PANS daughter (now on celllcept) will need one (per her rheumatologist, due to immune supression by cellcept).

Please be sure you daughter is thoroughly checked out by a rheumatologist. There are connective tissue disorders that can cause PANS symptoms and the pain you describe.

Mine did! she ate/eats loads of white pasta, cold cereal, occasional chicken breast from Chik fila. Pizza was the healthiest thing she ate. Pizza sauce is a vegetable, right? !?!I am sure diet is important, but not exclusive.

Fall 2009? That was the year when H1N1 was so bad. We had it. One of my children had confirmed H1N1 & then confirmed strep two weeks later. That was her onset of PANS.

My daughter was just found to have a connective tissue disorder(NOT lupus) and anti-phospholipid antibodies. We (including her docs) think it solves the PANS mystery for her. I would encourage parents of kids who respond to anti-inflammatory treatment to consider these systemic illnesses as the root of inflammation.

Ours was an ND with a degree in oriental medicine (MSOM?) I loved her. Will go back someday when money is not an issue. I am not a huge " alternative" person, so that should speak to its efficacy.

My daughter had accupuncture. She found it extremely helpful for her anxiety. She was 14 & they did use needles.

My child's doctors (both neuro & rheum) have suggested that the clavulanic acid in Augmentin is helping, not the amoxicillin at all. They have said that likely it is not working as an antibiotic, against infections, but as an anti-inflammatory. These are acrtuallynot the prescribing doctors for this medication, but they agree that the med could be helpful. Have you tried steroids at all for your son? That may also help decipher is it is an auto-immune process at play. I hope you get some answers soon.

So is there any way to compare results from Uni of OK , done in 2009 -2010 to see how they measures out?

I am in Northen Va, also. Go see Dr Latimer. We saw Dr Z (llmd) in ffax . she was good. Dr latimer brought my kids back from the brink. PM me if you like.

What other evidence was she looking for? If you would like specific recommendations, maybe post where you live (state) & we can help direct you.

Thanks, tmom, for posting this. I am going to go put on my thinking cap and attempt to read it! I wonder how rocephin fits here (if at all) I think prolonged dosing of this drug (iv for lyme) precipitated a major PANS crisis for my child. It (this article and our experience) makes me wonder if "herxing" that many people see is actually not herxheimer reactions at all, but just a dangerous increase in neurological and other inflammation or even simply drug side effects.

technically, no. I agree with MomwithOCDson (I almost always do ! call your PANDAS doc! and rowing mom, too: saw tooth is what we see frequently. If she had strep and then OCD , sounds like PANDAS to me. Maybe try a new abx or, if it continues, will your doctor prescribe steroids (once her throat is clear?) Make sure you get her throat rechecked a few weeks post med to be sure it is clear! We have had much success with severe OCD/PANDAS/PANS (whatever you want to call it ) with autoimmune tx (steroids, abx) and bigger gun tx (pex, ivig).

There are some scholarly articles about APS and OCD, psychosis, neuropsychiatric symptoms. Some had small infarcts from clots, but sometimes they improved from immunomodulation only. I also have APS. your post reminded me to take my daily aspirin. Thanks Hope you get some good, helpful info this week!

Kazooie, My daughter had an overnight onset of severe, incapacitating OCD (like you mentioned). She also has/had severe depression, fatigue, tics and more~even psychosis. We did treated for Lyme with an LLMD, and honestly ,it helped some, but by far, the greatest improvement we have seen is from autoimmune treatment. I mention this to you, since you said you have a NOS connective tissue disorder. My daughter was just diagnosed (at almost her 5 year anniversary of onset!) with Undifferentiated Connective Tissue Disorder and anti-phospholipid antibodies. Her rheumatologist believes this is exactly what the problem has been all along. She has been treated for PANS/PANDAS since 2010 with steroids, plasmapheresis, antibiotics and IVIG. It has taken much treatment and now an immunesuprressant (cellcept) to her to a really good place. The PANS/PANDAS treatment looks just like the treatment for UCTD, thankfully, so we have been on the right track since 2010! Do you have any markers of autoimmunity or inflammation(ANA, sed rate, antibodies)?

Where are they? Is she purposely hiding them? Could it be from self-harm?

Wow. You are dealing with alot. What type of Ehlers-Danos does your doctor think you have? Since you treated both the psuedotumor and POTS without resolution of psych symptoms, maybe autoimmune is a good avenue. Have you ever taken steroids? Why do they think you have ED?

My most severe PANS girl were born when I was 20 &21. The other two (more mildly affected) were born when I was 27 & 29. I do not like facebook either, it is too public. At least here I can hide behind PowPow, though now everyone knows my age;)

what does she do when she's not sleeping? does she pace around? does she play? Scream? Cry?does she stare off into space? I sincerely hope you get some direction and help on Sept 4th. I am praying for you & her, trintiybella!

Why did you start treating bartonella again? If she has been herxing for a year, that may not be good nor desirable. I really think you need to consider a different angle, I know you are with a geneticist and neuro second opinion, right? Admittedly, I am not biggest proponent of infections directly causing symptoms, but this really does not sound right. If something is making someone worse for so long, I would strongly recommend dropping it. Did a lab show a current infection, is that why you are treating again?

When do you see the geneticist or NYU?