T_Anna

So a family member pulled me aside during my son's celebration yesterday. He said his wife, a social worker, is really good and can "really" help with DS's OCD/issues. "Would it be OK, if she walks over to the house now?" I'm not close with this woman, AT ALL (think cold war), and had left my personal troubles at home with DS (unable to attend) so that I could concentrate and focus on being happy for my middle son. That was the plan and DS15 was the pone promoting the agenda (he texted "please spend time with DS13 and be there for his special day"). It was an inappropriate offer and at an inappropriate time/day/place. I complained to a close friend who lost her husband to cancer a few years back and she told me about this theory of the "Kvetching Ring" I have printed it for all my whole family, and figured it might be helpful for fellow PANDAS sufferers. -------------------------------------------------------------------- ttp://articles.latimes.com/2013/apr/07/opinion/la-oe-0407-silk-ring-theory-20130407 How not to say the wrong thing - April 07, 2013|Susan Silk and Barry Goldman It works in all kinds of crises – medical, legal, even existential. It's the 'Ring Theory' of kvetching. The first rule is comfort in, dump out. When Susan had breast cancer, we heard a lot of lame remarks, but our favorite came from one of Susan's colleagues. She wanted, she needed, to visit Susan after the surgery, but Susan didn't feel like having visitors, and she said so. Her colleague's response? "This isn't just about you." “It's not?" Susan wondered. "My breast cancer is not about me? It's about you?" The same theme came up again when our friend Katie had a brain aneurysm. She was in intensive care for a long time and finally got out and into a step-down unit. She was no longer covered with tubes and lines and monitors, but she was still in rough shape. A friend came and saw her and then stepped into the hall with Katie's husband, Pat. "I wasn't prepared for this," she told him. "I don't know if I can handle it." This woman loves Katie, and she said what she did because the sight of Katie in this condition moved her so deeply. But it was the wrong thing to say. And it was wrong in the same way Susan's colleague's remark was wrong. Susan has since developed a simple technique to help people avoid this mistake. It works for all kinds of crises: medical, legal, financial, romantic, even existential. She calls it the Ring Theory. Draw a circle. This is the center ring. In it, put the name of the person at the center of the current trauma. For Katie's aneurysm, that's Katie. Now draw a larger circle around the first one. In that ring put the name of the person next closest to the trauma. In the case of Katie's aneurysm, that was Katie's husband, Pat. Repeat the process as many times as you need to. In each larger ring put the next closest people. Parents and children before more distant relatives. Intimate friends in smaller rings, less intimate friends in larger ones. When you are done you have a Kvetching Order. One of Susan's patients found it useful to tape it to her refrigerator. Here are the rules. The person in the center ring can say anything she wants to anyone, anywhere. She can kvetch and complain and whine and moan and curse the heavens and say, "Life is unfair" and "Why me?" That's the one payoff for being in the center ring. Everyone else can say those things too, but only to people in larger rings. When you are talking to a person in a ring smaller than yours, someone closer to the center of the crisis, the goal is to help. Listening is often more helpful than talking. But if you're going to open your mouth, ask yourself if what you are about to say is likely to provide comfort and support. If it isn't, don't say it. Don't, for example, give advice. People who are suffering from trauma don't need advice. They need comfort and support. So say, "I'm sorry" or "This must really be hard for you" or "Can I bring you a pot roast?" Don't say, "You should hear what happened to me" or "Here's what I would do if I were you." And don't say, "This is really bringing me down." If you want to scream or cry or complain, if you want to tell someone how shocked you are or how icky you feel, or whine about how it reminds you of all the terrible things that have happened to you lately, that's fine. It's a perfectly normal response. Just do it to someone in a bigger ring. Comfort IN, dump OUT. There was nothing wrong with Katie's friend saying she was not prepared for how horrible Katie looked, or even that she didn't think she could handle it. The mistake was that she said those things to Pat. She dumped IN. Complaining to someone in a smaller ring than yours doesn't do either of you any good. On the other hand, being supportive to her principal caregiver may be the best thing you can do for the patient. Most of us know this. Almost nobody would complain to the patient about how rotten she looks. Almost no one would say that looking at her makes them think of the fragility of life and their own closeness to death. In other words, we know enough not to dump into the center ring. Ring Theory merely expands that intuition and makes it more concrete: Don't just avoid dumping into the center ring, avoid dumping into any ring smaller than your own. Remember, you can say whatever you want if you just wait until you're talking to someone in a larger ring than yours. And don't worry. You'll get your turn in the center ring. You can count on that. Susan Silk is a clinical psychologist. Barry Goldman is an arbitrator and mediator and the author of "The Science of Settlement: Ideas for Negotiators."

Thanks guys!! DS got stuck in the bathroom today and it was really stressful. But now he's out and his best friend is coming tomorrow morning before the services begin. So now we can be excited again for DS13 (non PANDAS). Therapy. We had done a ton of CBT from October 2012 thru January 2012. It really helped in the beginning with the suddenly severe OCD, but we had no idea of PANDaS at the time or what a flare is, an excerbation, or triggers. It worked really well at first but then DS kept getting sick and none of the therapists sessions were working. Unfortunately, we were given very poor advice from our supposedly pandas expert therapist. Recently I spoke with USF's Dr.S, but he reiterated that therapy with teens is only effective if they are willing participants. At the moment DS is very resistant. At the hospital for peX he hardly answered any questions from the psychiatrist and psychologists who came through. Yes, it is the exhaustion of getting all these therapies and not seeing any results. We will continue to hope that the results may still come. Thanks again, T.anna

Ok, first a disclaimer: I'm tired and non-PANDAS son's Bar Mizvah is in two days (Monday) so that maybe be skewing things. Update: We had plasmapheresis July 30 to August 3. Started propranolol last Friday. And we did HD IVIG last week on Wednesday and Thursday. So far we have only seen some minor improvements in DS15's mood and sporadic energy. He is more smelly (which I assume is more normal for an non hygienic teen). But I'm worried nothing is going to work. He is so sad about not being able to go to his brother's celebration. Today three friends came over and he was up (not just lying on the couch), getting himself food, very animated, etc. But now he is so anxious and almost in tears. Last night I decided that I was tired of being afraid of DS. He had forgotten to take his pills (he had two friends over) and wouldnt take them when I asksd. I snapped and was really honest with how he needs to help himself get better and take his pills, change his clothing, etc. I made him cry, but He got over it eventually. I'm wondering if I let loose because I sensed he could handle it and maybe something is helping or if this is as good as it gets and I snapped after 7 months of having a non functional child?! I guess I'll pursue immunesuppresants next?! We have never tried Minocycline, but if PEX and IViG don't do the trick will a new abx? W still think it's PANDAS (titers, symptoms, cunnigham panel, ibuprofen imorovement, etc), but have come to the realization that he may have had it since he was 2 or 3 (he's 15 now), so that might be why this is harder to "fix/help". He is reading the paper now and talks nicer, but I guess I wanted a HUGE improvement and this is just more in teeny tiny things : / Thanks for reading. All feedback welcome. T.Anna

Sending prayers. T.Anna

Glad to hear that Omnicef worked. Wonder if it would help DS15 with his bathroom issues. Although his seems more OCD as he only goes to the bathroom on Sunday nights (through Monday afternoon). T.Anna

Dr. T takes Oxford (united healthcare). You can call for the price if that isn't your insurance. T.Anna

Good luck!! Thinking of you guys. T.Anna

My son also didn't do well on NAC or Fish Oil. NAC was especially bad for DS, he was banging his head on the wall and still has some soft tissue in front if his skull. Take it slow and stop if things get worse. T.Anna

Thanks for posting!!! So glad to hear that he's in such a good place. Definitely an inspirational story for those of us still in the trenches. T.Anna

You can add Azithromycin with Augmentin. Maybe try a walk-in clinic, I've heard that they are more likely to prescribe abx. When DS caught Strep while on Augmentin last year we were given Clindamycin which I believe is good for fighting strep and can be combined with Refampin (another thread on the forum at the moment). But Azithromycin is popular with clinics and it would buy some time at least (you can say that your child has a drug eruption to Amox.). T.Anna

From drugs.com Using azithromycin together with clarithromycin (Biaxin) can increase the risk of an irregular heart rhythm that may be serious. Have you ever tried Minocycline? T.Anna

ChrissyD, how do I know if my child has mito? I probably should know this by now. T.Anna

My friend who a pediatrician and married to a cardiologist said that ibuprofen is very safe. we went away with them a few years ago and after kayaking I had a ton of aches in muscles I didnt think existed, they made me take 3-4 pills at a time..."2 is nothing!" T.Anna DS15 who sometimes take Advil and sometimes alleve (lately at night, since it's 12 hours).

Dr. Bahkta said on the last Radio Pandas that she thinks Naproxen (alleve) to be a safer option. She referenced a study on long term pain med use in Europe I believe (it was the Summer Flares show). T.Anna

Thanks for asking. Yes, the nurse is coming for second IVIG today. We may also start beta blockers today (Proponlol 10mg x2 day) to help with the hyperthyroid. I am excited since it finally seems as though we have more answers and that things might be working (please God). However, I'm also very nervous about a few things: 1. Did PEX really work? So far mood is definitely better, but OCD is still so entrenched nothing seems to have shaken free yet. He still only eats certain food on certain days, no bathing, etc. One hopeful sign: yesterday his friend was here and had to leave so that his older brother (18) could get into Legoland (unattended adults are not allowed- so the 15 year old brother pretended to be 13). After they left DS said "I'd go there!" Usually he is very fatalistic and stresses that he will never get better and "do" things, so that was hopeful. 2. Will IVIG help the way we want (give his immune system a boost)? I need to re-test siblings, they just finished abx for strep. I should prob take them to the clinic to be cultured (rather than just the rapid strep test). 3. Will the beta blockers help with the sweating and palpitations? DS is gummy, sweats lately and has palpitations (all these have been increasing as the thyroid numbers go down). 4. How can you tell if the anxiety is from thyroid or PANDAS? I think someone on the forum said once that if it is A or B it's probably C =for all the above. Thanks for asking, sorry this hot long. It is rainy and stormy outside, so maybe that makes things seem more dramatic. Thanks again, T.anna

Seems it is also used to treat hyperthyroid. http://www.uptodate.com/contents/beta-blockers-in-the-treatment-of-hyperthyroidism T.Anna

DS just completed day 1 of his IVIG today...hopefully third time is a charm or the PEX is working?! or it's just a flukd, but I'll take it. He is singing along to DH's Smithereens albums. Not sure it means anything, but I could listen to the off key singing all night! Great news Qannie! Good luck tomorrow LaurenK. T.Anna DS15

Anyone have experience with propranolol? What about "sick euthyroid syndrome"? DS's tests came back regarding Graves and Hashimotos....all unlikely....the anti-thryroglobulin and anti-thyperoxidase antibodies are negative. Hashimoto encephalopathy unlikely. Possibly a direct viral thyroiditis, not immune related. ANA negative (no CNS lupus) Thanks for any information. T.Anna

My friend works at a hospital and they had bed bugs. She said that these dogs were amazing. T.Anna

Does anyone know if toxoplasmosis is something a vet routinely checks or do we need to bring them in for it? We have two cats and they have been DS's motivation to get up and walk around the house looking for them. We live on the 5th floor of an apartment, so they have never been outside. We got them both as kittens from a reputable shelter, but they were rescues so there is still a slight chance. Of course we live in NYC and my kids grew up in city playground sandboxes. We even have a picture of DS as a toddler eating the sand (and we SAW the rats that would come through if we hung out too late)...ughh! T.Anna

My son has this finger flex like Val Kilmer in Top Gun (where he rolls coins back and forth) or in Real Genius...yes, I'm a product of the 80s. He also has a movement when he's lying down (couch bed) and he keeps adjusting his pelvis as if he's just getting comfortable....took us a while to realize that it was so repetitive since it seems so natural, got worse when he was off Diflucan or skipped a dose. He had one when he would pray where he would literally roll his whole body up, but he stopped praying (scrupulocity was our first OCD clue), he stopped praying so we haven't seen that in a long long time. He has a neck roll, but it isn't as reliable as the couch one. T.Anna DS15

I'm on the fence regarding the MRI, if we pursue that testing, we may do it through a different doctor. Right now I need to focus on thyroid. After thyroid is answered and we decide if we are doing another IVIG this week, then I can focus on other things. Oh and we decided to proceed with a bar mitzvah for non-pandas son in 2 weeks (just started planning), so there is a lot going on. T.Anna

Yes. I was answering the psych question for PowPow. The patient in question was dx with PANDAS (1st and for many years) and Lyme (with culture when tics became worse). Did I follow up? Yes. The NP returned my call the first time and the second I was only faxed my results. The secretary did leave a message last week with possible appointment dates for their psych. There was no follow up on the MRI or brain spec/scan paperwork, but the dx they sent Oxford said depression so they may not have even put it in : / Truthfully, my son was in bad shape and Dr.S offered immediate treatment, so we shook off the NYU experience and went to Brooklyn. Whether or not the PEX worked, I could not have asked for better care or a more sympathetic staff than Maimonides. When I have finished with thyroid numbers this week (god willing), I will call my GP at NYU and follow up with NYU epilepsy to see where things are. But at the moment I have my hands full....and I still haven't done the laundry : ) T.Anna DS15

Disclaimer: This is my personal experience and what was told to me only! We took our son 15 to NY Epilepsy and Neurology on July 24. Dr. N did not believe my son was suffering from PANDAS/PANS. He did not think a high CamKinase on the Cunnigham panel showed anything that couldn't be found on the average 'person on the street'. DS also had an elevated ESR (erythrocyte sedimentation rate) blood result on the blood tests Dr.N ordered, but the NP (I called to follow up on results) called and said all results were normal. Another parent had sent me a PM that her child (young adult) was hospitalized at NYU recently and was sent to psych after it was decided that the girl didn't have Lyme (was positive on other tests,cultures). According to the hospital's tests she didn't have Lyme and they had her pic line removed - her main symptom were severe tics. Since this subject can get heated, I am just posting because my experience was so different. I am NOT saying that you should not consult with them, only that you are aware that his PANDAS criteria may be different from that of other specialists. T.Anna

LLM, What B complex are you using? T.Anna