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Thanks for that comment- made me smile:)

well said, Wendy

So- help me PhillyPA-- who do you find to test all this? we did get wilson's checked out; treated for CDC+lyme & babesia (Quest labs); the gamut of every available PANDAS treatment. I want no stone unturned. How do we find a doctor willing to turn over every stone & also who even knows what the stones are? Can you tell me some more (or even direct me) to other possible diagnoses?

I really felt like it was clearly promising. We did see an noticeable, quantifiable improvement. This was almost a year ago. She took for a week-- so not a total fair assessment, but then she refused it. we have a HUGE problem with her not taking medicine. fairly soon, we will be seeking more professional help (possibly an admission) & she will most likely take any medicine they give her. I will be asking them to restart the riluzole. Of course, as an admittedly desperate parent, I want to see hope and promise in every new attempt to help my kids. We have tried lots and lots of things, but riluzole is one I will definitely ask for when she takes medicine again.

This is great. Thank so much, pandas16 for putting this out there. I need some new avenues for one of my children. I cannot get our doc to test for NMDA-- the docs says my daughter would be getting progressively worse (as far as motor skills- walking, eating, etc). d-cycloserine; glycine... thanks! We did have some success with riluzole-- so maybe this is all on the right track for her. Anybody know where or how I can get a doctor who is willing to do this? I suppose I need to get her to a place (mentally) where she will take medicine. none of it does any good unless you swallow it

I think the issue is: (and here I am adding to the confusion) when a parent posts on the forum that typical PANDAS treatments are not working--- then your kid might have lyme! If their WB is neg - try IGENEX. If the IGENEX if IND or NEG- you might still have it. How is anyone supposed to ever rule it out? Maybe PANDAS or PANS or PITANDS treatments just are not working. You may treat the lyme (or myco p or strep or viruses, whatever) and your kid may just be still sick. I think this is a chronic, autoimmune condition. Some kids may be refractory to the current treatments. If your child has an infection, by all means treat it. I know that everyone on here has the best intentions for all our kids. However, the huge amount of doubt and stress that is added when a parent is afraid to give their kid what could be a life-saving (I am not exaggerating here!) dose of steroids is too much. I speak as the parent of 3 children being treated for PANDAS. One was a clear cut strep case, one unknown trigger & one who had Lyme and Babesia WA-1. I am adding nothing to the conversation-- I just wanted to point out that to the average poster on the forum-- this lyme testing question never ends! When would someone be satisfied with a negative test?

My older daughter had similar thrashing, that also led to a chorea diagnosis- though it was not EXACTLY like SC. It has decreased dramatically- as her rages have calmed. She is post IVIG, post pex and post IV steroids. Who knows what worked and when it stopped- it just kind of stopped. It had been a major, major issue for months. She would cry and ask when it would stop most of the time- but some times, she would see almost "out of it". I shudder to think of those days. I think I had protectively put them far back in my memory. I agree with PhillyPA-- I think IV steroids are wonderful!

My 5 yo daughter also had a month of steroids last winter. It was very, very successful in treating her PANDAS symptoms. We may have had a few rough days in the first week or two, but of course, PANDAS symptoms were rough- so who knows what was causing it! My just turned 4yo just had 2 doses of IV steroids and 30 mg at home for several days after an asthma/pneumonis hospitalization. She was a little hyped up (although was very hyper at that time already!)but she did great and many questionable symptoms (PANDAS?) got much better the week+ after. Unfortuantely- she started crying in the car last night about how she could not stop seeing knives "the sharp kind" and she was too afraid to tell me what the knives were doing. So, I guess the effect did not last. darn.. best wishes.

HI Colleen, I have a friend whose young daughter actually developed seizures after a similar exam. I think she has done a lot fo research on the drops. I do not think she also has PANDAS, but I think there may an autoimmune disorder involved also. (I cannot remember for sure). If you would like, I could connect you to her. PM me if you want.

Zymaderm is thuja. Give it a try! be patient and persistent.

We have used something called Zymaderm with excellent success. You must diligent about applying it. It seems to do nothing for 2 weeks or more; the wart slowly changed colors to dark and just fell off. Zymaderm can be purchased online.

Very well said.. There is a reason you are called smarty:) I had not thought of it in those terms (just waiting for her to fall apart) I will make an appt tomorrow. Thanks!

Just a little preschooler update: My 4yo has been much better the past few days. A few things have changed. 1. She is sleeping better at night- not really sure why- I just started putting her to bed 1/2 hour earlier 2 weeks ago and she is sleeping longer. My mom always says the "sleep begets sleep" ~ if you are overtired you will not sleep well; I see that evidenced here. 2. She had an asthma attack last week that landed her in the ER. It was discovered that she had pneumonia as well. That bought her a hospital stay, 2 doses of IV steroids (decadron and solumedrol), IV rocephin & IV zicef (ceftin!). She came home with steroids (30 mg x 3 days) and a z-pack. She has been home a week and the last few days have been so much better. Coincidence? Finally maturing? Who knows? Yesterday she was at her grandparents and they even mentioned to me (without my questioning) how much calmer she is. So now, I watch and wait for it to recur...

I came across this site (I hope it was not mentioned already~I did not read the entire post) while searching for Revitapops- B12 lollipops. www.spectrumsupplements.com My daughter takes B12 drops, and I really do think they are helpful. I think these lollipops might be a very good option for some kids, ASD/PANDAS/whatever!

Has anyone experienced this with their kid (or self) PANDAS or not? My daughter, who most likely has PANDAS, and is on a steroid dose from a PANDAS doc right now, had a significant issue this evening. She very suddenly fell to the floor and began flopping around and moaning in pain. She would only say her wrist hurt and that is was "ghost pain". Only when I offered to hold her to console her would she say anything else. She grabbed my arm and pulled me at top speed to her room. She told me that she saw (WEEKS ago) a TV show where a girl broke her wrist. She was feeling that pain. It was prolonged and she only slept when I brought her to my bed and held her until she fell asleep. She even held her arm like it was broken and was so very, very upset. I could not distract her. I offered heat, ice, back rubs,read books, sing songs, even advil and she just cried (no tears, though) that nothing would help and nothing I could do would make the ghost pains go away. Any ideas-- is this a psychological/psychiatric/neurologic problem?

you might be able to email lynn johnson (pandasresourcenetwork.org)? She might be able to help you on that.

Chiming in here--not that anyone asked my kids never had remitting/flares either- even the strep+ one. She never got better between the strep infections. Both girls were bad, then worse, then pretty bad, then worse-- then TOTALLY HORRIBLE. The autoimmune therapy of steroids helped for a period and then they got worse again. PEX and IVIG helped one. PEX AND IVIG helped the other somewhat. My point is that my girls definitely fit the symptoms are "always there" & "worse" pattern. I wish I had a superman cape. I would whisk in and fix this stupid problem for all of our kids. Thinking of you eljomom. Did you get my PM?

How is your son, NMom? I have been thinking about you and him! Please let us know, if you can

A integrative medicine doctor is great for all of this. We saw an MD (rheumatologist) who practices "integrative medicine" and is also on the LLMD list. She looked way past lyme. She looked at everything you listed and more. She is in Northern Virginia, but there are others like her!

Just wanted to chime in- to reinforce the "no Strep- no PANDAS" issue. I was convinced (myself, and by several well-meaning doctors) that my daughter did NOT have PANDAS due to normal ASO and neg throat. A year later, a second daughter had strep and then changed a few weeks later. My first daughter (negative strep) was an onset just like your son's. I shudder to read it. Without the strep positivity that my second daughter had, my first daughter's time for onset to treatment was too long. I would encourage to not waste the time and money we did on many other doctors and go straight to a PANDAS doc. My second child has had plasmapheresis and then IVIG and is doing amazing. I cannot even believe that she is recovered (or remitting- but who cares-- we live in the now!) The first one is still suffering, but we are certain that since she went much longer without proper treatment- it is going to take longer. Besides, even the term PANDAS, is going by the wayside- to reflect the multiple possible infectious triggers to the acute onset psychiatric symptoms to this AUTOIMMUNE process. Like everyone else here, I am sure, feel free to PM me. Prayers and understanding here...

thank you for posting about both of these books~~ Another book to consider is "The Man Who Mistook His Wife for a Hat", a fascinating collection of neurologic/psychiatric case studies by Oliver Sacks. No PANDAS in there but I certainly read those stories in a different light as a PANDAS parent. I find anything by him interesting. His biography "Uncle Tungsten" is great, too.

I am not a doctor, but I believe there is a steroid-induced diabetes-- a transient condition that can be caused by longer & higher doses. I believe, if the hyperglycemia is mild (if he is even hyperglycemic) and he is coming down on the steroid anyway- they do not even treat it. He is young, though, so I do not know how that might affect it. Otherwise, it is treated with insulin. Has he ever had steroids for any other reason before? I cannot remember. Please let us know how the blood sugar test turns out, NMom!

I am really sorry that things are so rough, eljomom. I know you are having a lot of junk thrown at once. When it rains it pours, doesn't it? When I have had my worst times-- and there is alot of them-- I find it is EXTREMELY helpful to get away from this forum. Sorry-- but THERE>> I SAID IT!! we can spend hours (like what I am doing right this very second!) away from our families, lives, laundry, husbands (or wives or whatever) trying to micromanage a bunch of junk that we have no control over, any way. The best we can do is to find a doctor we trust and then do what they say. If you (I am speaking generally here- not just to you!) do not trust your doctor, there are others. I sought multiple opinions out of frustration. They all have their faults -- my FIL always says "everyone puts on their pants the same way", meaning they are just people, too-- and do not have all the answers, but they are trying to help. Even as horribly, terribly sick as my daughters' were, at some point (and it pained me to do so) I had to put on blinders to the incredible amount of useful and useless information I could dig up online. I had to STOP looking, at least for awhile. I was making myself more than insane. I had to just follow our doc's sdvice. At times, yes, I felt like we were getting nowhere, and at times we probably were getting nowhere. At those times, I did not look at the forum for awhile, and just focused on the plan we were on. At the time, there was really no plan, as no pex or IVIG was available and she would not take any medications. We were barely just treading water at that point. I had to focus on living and realizing that ultimately it was out of my hands-- because it was. Maybe you can take a PANDAS holiday. I know it sounds foolish to say that~ but, if you are not getting anywhere with abx, doctor, husband, maybe give it a break for a little bit. A month, or even just a few weeks away from this is not going to make or break your child--whether it is TS or PANDAS. I sure hope I did not offend any one here with all of this. Everyone here that I have conversed with privately has been wonderful and we all want the best for our kids. I just know what a terrible drain focusing on the forum & not on our families is. I know because I am doing it right now! eljomom~ I am thinking of you and praying for you and your family tonight.

THANKS, beekneesmommy! we cannot lose hope. For some of us-- hope is all there is some days!

On a lark, I ordered a subscription to the Saturday evening post magazine, through an online Tanga deal a month or so ago. I went to my mailbox this afternoon and right on the cover: BRAIN HEALTH: The Viral link to mental illness I sat in my car and read it before I even went back to the house. Check it out! I needed to read this in print today! Saturday Evening Post Article