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Also,usually, a first dose would not be done in the home. At least that is how our doc does it. In some cases, she may order it at home, but only after successful infusion while being monitored.

Why are they "not doing IVIg" now? That is strange, i think.

Have you ever had steroids for the eosinophilia or bronchitis? Can you take advil? If so, many people have tried taking regular advil for a few days around the clock-just as you would for muscle pain. Many think it helps the PANS symptoms. I am skeptic by nature, but have seen it help my own children. That would be an easy start for you, perhaps.

My daughter took plaquenil, while under the care of rheumatologist/llmd a few years back. I thi nk k the doc was giving it for inflammation, but I also thought it was for her babesia infection. It is so hard to link anything to a certain med, as there were so many at the time. She did fine with it, side effect wise.

No I was not. I was expecting her before the antibodies were found.

Thank you so much for posting this. I am so sorry to read your story. I am so glad you are getting more help and hopefully will get some good help soon. I can attest, as the parent, that our lives changed the day my daughter was diagnosed with an autoimmune disorder. It also changed dramatically the day she got her first high-dose steroids! (well, day 10-- but who's counting ) Please let us know how Dent goes. Also, is Dent the facility that diagnosed Conversion disorder on all those kids from LeRoy? If they do not help you, please do not give up!

wow--- what else is this done for? that is pretty neat! so- kind of like a slow and low vaccine?

Is this different than allergy shots? & it is done for strep? Is this an integrative med thing?

Trinity, how is your girl?

not nosy at all. I am so glad to share and maybe get some suffering child/family on the road to healing. These were just regular blood work. Nothing fancy, really, just a good rheumatological battery of tests. The RNP antibodies are associated with something called "mixed connective tissue disorder" which hopefully my daughter will NEVER develop (since she is receiving immune suppressants, steroids and IVIG). MCTD is an overlap syndrome, where you have lupus, scleroderma and polymyositis symptoms combined. That is a very serious, sad illness. Anti-phospholipid antibodies are generally only an issue in pregnancy and pregnancy loss. I actually also have these antibodies (or had at one point) and when I am expecting, I take lovenox and aspirin to prevent undesirable clotting. My daughter's doctor says that it is thought that the body simply make an autoimmune response to these bad antibodies and that is evidenced as PANS in my kid. My other, now recovered, daughter just had all these labs done & we are waiting on results. These tests were not the only ones she was considering for PANS symptoms, meaning that there were many other antibodies she checked for and were normal. ask away!!

I guess I should edit that;) Maybe not all kids but yes, boys, too! I do not think that a kid who is doing well would have these antibodies, however, there is a case report of a girl who had a psychotic and raging episode, who was treated with psych meds and eventually recovered. A spinal fluid specimen was taken, but this was before nmda encephalitis was discovered. Years later she relapsed, a specimen was again taken and was positive for nmda.the initial sample had been archived, was retested and was positive! So, to me, this begs the question: did she truly relapse (though she was not treated appropriately first go-round) or was it just at a "tolerable" or subclinical level for the ten years or so between episodes? My daughter does not have this. She has anti-RNP & antiphospholipid antibodies.

ARUP labs (University of Utah?) Athena Diagnostics Mayo U Penn will (or at least would ) do testing in their own lab, also, if you go to Children's Hospital Of Philadelphia . we had a neuro consult/ testing there a few years back. I think Athena may only do blood testing. CSF (from a spinal tap) is the most definitive, as there have been reports of negative blood tests and positive CSF. I think ALL our kids should be tested for this.

this is great. I really hope you get some answers. even with normal MRI, LP, EEG, ASO- your child may have a very treatable form of autoimmune encephalitis, which can be only obvious from severe psych symptoms. praying for you and please keep us updated.

The memory thing happened here, too. My daughter even forgot her baby sister had been born ! It has mostly resolved qfter lots of immune tx and longterm high dose augmentin. Sorry I cannot offer short term help. can you get into to dr latimer?

Have you tried steroids? High dose? I cant remember. Are you in Midwest?

I completely agree and have wonderd the same thing. Perhaps it only works quickly for clearcut strep pandas, like the study requires. It is a bit misleading and disheartening, isnt't it?

Risperdal

I do not think you are starting an argument, rowing mom You are right, we are all trying hard to help our children. That is exactly why I am glad I have a chance to explain what is working for my daughters. My daughter is still on 1000mg Augmentin XR, from our PANDAS doc. She is receiving Cellcept daily, for immune suppression. She has only been on it for about 10 weeks, so there may not be a whole lot of immune suppression going on yet. She received a flu shot last week, in preparation for the season. We have not seen any increase in any infections since starting this medicine or since she has been receiving IV solumedrol (though that is only once a month, so I think that would not affect immunity). I have not addressed the chronic infection issue with the current neuro & rheumatologist that are now treating her. They did check myco. pneumoniae for her, and for our other, now recovered, daughter (14). They must see some reason to check that, so maybe they are looking for chronic infection. Those results have not come back yet. This is the way I see it, and, I admit, it is not as far-sighted, as many parents on here. My daughter was suffering. Severely. We did lyme tx for over a year with a top LLMD ( was a board member of ILADS). My daughter even had a PICC line. She just got worse. Not herxing, just worse. Our LLMD even put her on steroids for a trial. They were low dose and made little difference. What has helped my daughter(s) was high dose steroids, pex and then IVIG. (in that order) My mom has crohns, my sister has AS, others in my extended family have other autoimmune diseases. I imagine there may be an underlying infection or trigger that started or allowed these disorders to continue. I am grateful for the remission immune tx has brought my daughter and family members. I think that the time spent on searching for infection after infection (when labs say otherwise) may cause many to lose valuable time in shutting off the autoimmune process. I do not think that autoimmune diseases occur in a vacuum. I am sure there are things that are causing them, and allowing them to perpetuate. I will be honest and say that I do not have the time or frankly, patience anymore (after 5 years of this, with 2 severely affected kids and 2 others more moderate + multiple other children who thankfully are not affected!) to do a gluten free or paleo diet, to cut out dairy, to meet with a homeopath on-line, to deal with complicated "detox" regimens. The other thing that I am thinking, in short-cutting (perhaps, in some people's eyes) is that, really, we are doing the best we can with what we have. I saw what worked and what was not working. Also, I am Catholic. I am hoping to get to heaven one day- where everyone has perfect bodies and all this lyme/pans junk is gone. There is something beyond earth and all our sufferings, so we are just all doing the best we can. That belief has helped me immensely when I start to stress about what is the right path here. I am not trying to preach, just explain why I am learning to let some of this go and be grateful for the progress my daughter has achieved. Not sure if that answers what you were asking, Rowingmom. I am so glad to read your signature line, that she is doing so well. That is awesome! I know that I come across anti-lyme treatment at times. or all the time. I just want people to know that there may be more than one way to remission in this disease. And if lyme treatment is not working, perhaps pushing it more and more is not the right answer. i am glad for the opportunity to explain a little more about my position on this subject.

How do you know if parasites are present? Are these intestinal?

Tu4for, We did a similar Lyme treatment plan. Cdc pos lyme and babesia. My daughter was a mess. Very very severe. Five years post onset, we finally have figured out what is wrong. We had come to the conclusion it was an autoimmune prob, after much "detox", iv abx for lyme, integrative med did not help that much. Steroids did. PEX did. My daughter was found to have an underlying autoimmune disorder. I gave up on the Lyme avenue when my daughter became so ill she would not take any meds or even let us access her picc line to flush it. We had no choice but to stop. I thought it was the end of all hope for her. However, the change in treatment focus was precisely what was needed. Like t.anna said, the recent Mayo Clinic thread may help you.

What do you mean?

Pmd you philamom

ENA - those are the antibodies that were checked when her ANA came back positive with a speckled pattern. Extractable Nuclear Antiigens. She was positive for RNP. So if you get a positive ANA= the lab should do further testing based on what the pattern of the postive ANA is; speckled, diffuse, I forget the others Also the anti-phospholipid is significant, per our rheumatologist. It was just checked the second time, to confirm presence and it was still there.

Here are some tests that were recently checked on my children : c3 c4 Sm,RNP ,Ro,La antibodies (these were specific antibodies were tested based on her positive ANA- speckled pattern) anti-microsomal thyroid Ab Angiotension Converting Enzyme anti-thyroglobulin Ab Anti-Beta 2 Glycoprotein 1 (igg, igm,iga) anti-Cardiolipin (igg,igm,iga) thyroid profile von willebrand antigen lupus anticoagulant screen and reflex sed rate crp Maybe that will give some ideas for some specifics to ask for.

Cellcept (oral) Monthyl ivig 1g/kg 1g solumedrol monthly 6 months total for infusions. Philamom, We have talked before, about lyme stuff a few years back. Has the ANA ben thoroughly checked out? dsDNA, ENA, ace, has it all been checked? Antiphospholipid antibodies? My daughter had lyme and babesia but treating it was the not ticket to recovery for her. This seems to be! Not sure if the lyme was a contributing factor or just coincidental, but unfortunately there is another disorder at play . so glad they found it though!