Luna2

Hi - My dd13 has been dealing with PANDAS since she was 9. She has seen a psychologist for CBT that was initially one of the most helpful things we did and she was also on antibiotics. If you see someone good with a grounding in PANDAS she should be able to frame this for your daughter as an illness that effects her brain. We have taught our daughter to talk about it as an autoimmune disorder. CBT gave us tools to handle some of the situations that came with PANDAS. We still use some of it when needed. It was empowering.

DCMom - Is your kid has been on zoloft 12 mg for a while and having symptoms, I would up it to 25 mg. It is still a low dose. Or go to 25 mg on day 1 and 12 mg on day 2, etc. which increases more slowly. The half life of SRRIs is long so kiddo should not notice the up and down. Also, I have a detailed log I keep of flare up behaviors. I chart these so that I can track if this change is helping or making things worse. I would give the new dose about a month to settle down unless things are dramatically worse then I would drop back. If things are severe, I also up the dose of augmenton ES (I find the kind of augmenton also makes a difference for my dd and she does best with the ES). The clonidine is also a possibility. It has a patch form that can be cut into lower does. Worked great until dd developed an allergic reaction to the adhesive. Sorry to hear that the anxiety is rising.

Hi - My dd14 (94 lbs) has been on zoloft about 2 years. We started at a very low dose 12 mg. then went to 25 mg and are now at 50 mg. This has especially helped with eating anxiety (her type of anorexia)and separation anxiety. We tried prozac when she was first diagnosed 5 years ago and it made her moods and anxiety much worse. So type of SSRI is important. This year we went up to 50 mg when her anxiety was so severe that she couldn't go to school. We think that mono caused the flare. We upped the zoloft and added clonodine 0.05 mg. Within a few days she was starting back to school and rages ceased. Since then she has been great. From cuising this board, I have wondered if a certain set of symptoms might be more appropriate for one type of SSRI over another or at all. For example, I have noticed that the kids with severe eating issues seem to do better with an SSRI, specifically zoloft. Has anyone else noticed this? BTW I titrate most of the meds I give my kid. I ususally give her less than the Rx for a week or so and then increase to see if she reacts well or not.As always, I do not think this is a one size fits all illness and we need to be flexible in our strategies to outwit the beast.

How do we keep our kids safe from lyme ticks. We live in a wood area, dd 13 loves to be outdoors and we have 2 cats and a dog. Also, our favorite vacation is camping and we hike a lot. Do you dose with pesicide or ? Spring is almost here (CA) and the thought of another tick causes my blood to run cold. What about lymes and dogs and cats? Can they transmit? Do enzymes in saliva break down diseases? Thank you.

Whew we know this one too. So sorry you are dealing with it. Many very good suggestions. Our dd is 13 and the thing she desires most is facebook, friends and freedom. These are the goodies that she "wins" taking medicine. We also found that getting her anxiety somewhat under control has been helpful to getting the meds swallowed down. We use clonodine patch 0.1 mg/d for some of the anxiety sxs (unfortunately she has developed a rash to the adhesive). She liked this because she didn't have to swallow anything. We also found using Nerve tonic cell salts (from health food store) sometimes helped and are sugar pills dissoved under the tongue. She is currently on zoloft 50 mg/d; aug ES 1 1/2 tsp/d.; ibuprofen liquid 3 tsp./d. We have found that the ibuprofen was a good starter because she did not feel like she was chronically sick taking it because lots of people take it for headache, etc. It seemed to calm things down to allow us to get more meds in her. My toughts are with you.

Hi - We have tried it all. We have been successful with low dose zoloft. Originally our dd!! was rx'ed at about 25 mg. I cut these in half and kept her at that level for a year +. This help alot for anorexia. The anorexia was the most scary manifestation of OCD because she felt like she would choke or didn't want anything in her month. DD is now 13 and on 50 mg of zoloft because of increased separation anxiety that was keeping her out of school. I let my docs know when I go up or down with the dose but I titrate. If they don't like what I am doing then I don't tell them. Recently we add 0.1 clonidin patch to the mix. This has helped with the anxiety and rages (it decrease flight or fight response). She is also on augmenton ES and we have found that dd reacts differently to chewable vs pill vs liquid. Ours does better on liquid. We also found cognative behavior therapy useful and ERP not so much. DD had a terrible time with risperidal. Tenex did nothing noticable. I also add melitonin for sleep; cell salts for occas immedicate relief; and clonipin for severe anxiety episodes. So, psych meds have been helpful and not all bad. I think the doseage is important to titrate to tolerable levels. So if 25 mg is causing bad reactions then try 12 mg. etc. I don't think this is a one size fits all illness.

I am so sorry your girls are having such a hard time right now. I have found the school refusal and seperation anxiety very difficult to deal with. We have a dd13 who just went through most of Dec. refusing to go to school. This was the most extensive bout in the 5 years of PANDAS. We decided that for many reasons it is important for her to be at school - self-esteem, our jobs, etc. Since elementary school we have enlisted the schools help. When she was younger, we would go to school (getting her in the car was a challenge) and sit on the steps of school, or walk around the block (we live in Northern CA)or go to the office or the school library and one of us would stay with her until she could go in to class. Sometimes a friend or teacher would come by to help. We also did relaxation exercises, breathing and Klonipin if needed. We also used nerve tonic cell salts which seemed to help some when she was younger. This year (7th grade) we have developed part of her IEP to address this. The school counselor comes out to the car to help her. Usually she will go to their office and play games until she is calm enough to go to class. This all can take a couple of hours. Sometimes we stay and sometimes she lets us go. Low dose zoloft has also helped with the anxiety. When all else fails, she comes to work with one of us. We try to make the time with us a little uncomfortable and especially boring. Our daughter is back in the groove right now. Hurray. To see her, you wouldn't know she was the screaming in the car last month... This week we are dealing with the school and all of the missed work. Dealing with schools is right behind dealing with doctors and PANDAS. Good luck. Let me know if you need more specifics.

Hi All - My PANDAS daughter has restrictive eating issues BIG time and will take meds in only liquid form that tastes good. For tinctures made with alcohol, I add a small amount of boiling water, let it cool (to cook off the alcohol) and then add either frozen juice concentrate or full strength Italian soda mix. Then I add a little additional water and sweetener if needed. I have also used the juice concentrates from the health food store (usually come in grape and maybe apple). Our favorite flavors for covering bad taste are lemon, raspberry and grape. I also make this up in a shot glass so that the amount does not become overwhelming. Good luck

We used a short burst of steroids for five days when DD12 had a flare up of anorexia. The steroids caused a huge jump in rage but end the anorexia. Very useful to start up eating for us but at cost.

Hi - Buster, you are amazing and a PANDAS parent too. Your info has helped me and my child so much. Thank you. I like the chart and I would organize it a bit differently since it is for medical providers. I would organize with signs and symptoms first with the differences, then diagnostics, then treatments. If it was done that way, it could have multiple uses from how to differentiate to diagnostics to try and finally some treatments. There really isn't anything like a good summary article with the basics of all of this such as it is and this is a start. Also, I would add eating disorders/swallowing difficulties/anorexia since it does show up in so many of our children. BTW my daughter has also suffered from severe food restriction and swallowing difficulties. It is terrifying. Thank you again for all of your great work.

Try the liquid. DD13 hides pills. We find them everywhere and can't tell if she had a dose or not. We now have her on Augmenton ES liquid. She is about 90 lbs and take 1 - 1/12 tsp/d. Luckily she says she also feels best on this form on Augm. We tried the chewable and she hates the taste. The BIG regular pills she is unable to take at all because she is afraid of choking.The good thing about the liquid is I can tell if she has taken it and it is difficult, although not impossible, to hide. Good luck.

You know u r a PANDAS parent when you get a call on Saturday night at 11 p.m. from your kid saying that she can't stay at the retreat any more. She is too homesick and afraid. You jump in the car and drive the 100 miles to the retreat center grateful that she managed 24 hours of the retreat. You get home at 3 a.m.

Hi All - We see Herb Schrier (psychiatrist) at Children's Hosp. in Oakland. He has rx'ed antiobiotics and has connected us with resources. Still looking for better local resources that are affordable or on insurance.

Hi - I used homeopathic thuja (6c) once a day orally for about 3 days and applied thuja oil externally. They all cleared within a couple of months. Both are OTC at natural food stores. joanne

My dd12 has had sleep issues for years.Is unable to go to bed, combative with attempts to get her to bed and sometimes sees monsters. We give her between 2.5-5 mg of meletonin at night. We use the sublingual orange flavored kind from Source Naturals or the mint ones from Trader Joes. When she was younger and we gave her a very small amount of meletonin, Source Naturals had the lowest dose sublingual tabs. We have also found Bedtime Tea by Yogi brand to help (make it with honey). Last, we do magnesium massage with new age type music. We have a regular relaxation spa around here in the evenings. Wish it was for me!

Sorry to hear that your daughter is in a flare-up. My dd12 does has the same issues black widows, snakes, and BEES. She restricts eating and starts hiding/hoarding food. Extreme frustration and anxiety usually accompany. I move into my "whatever works mode" that includes chocolate anything (milk shakes, pudding) because she loves chocolate; magnesium bath or massage with magnesium cream; sometimes homeopathic belledonna (found at whole foods) because the tablets are lactose and sweet she will take. Whew. Hope she is feeling better.

Hi - Our daughter was dxed with PANDAS when she was 9 (3rd grade)in 2007. Her major PANDAS behaviors included difficulty swollowing, bad taste from metal eating utensils, sensitivity to texture of foods, claustraphobia, fear of the dark, difficulty holding a pencil, difficulty tracking printing on the board and copying onto papers. These were all new issues with the onset of PANDAS. The restrictive eating was the most scary and life-threatening. We worked with an OT (Denice Killingsworth, Walnut Creek, CA) for a year for sensory integration work. Alexi learned to press her thumb to the top of her mouth to help her eat; she used chop sticks instead of forks and spoons or plastic ones that she choose from the OT catalog; Denice had many swings and games to help with Alexi's balance and fears. We still have many swings on the patio, trees, etc. at home for calm Alexi to use to calm down or focus. Alexi is not symptom free but much better and we graduated from our work with Denice with many strategies and tools that continue to help with a complicated illness. Most importantly it gave us strategies that Alexi can use when their is an onset of PANDAS sxs from an exposure. If you need more specifics than this, let me know. OT, CBT and abx are our lifelines with this illness.

Finally, NIMH is beginning to catch up to our PANDAS forum. It is all of us, this incredible cyberspace parents group, that has created change. Thank you for being there. I try not to imagine what would happen to our children and all of the other children without this determined, creative, caring group. and thank you ACN.

We saw psychologist Katherine Marinez, PhD, for CBT and she was wonderful. We still use her relaxation tape and techniques 2 years later. We found that many therapists do not really do CBT. They just think they do. Katherine wrote a book for teens and anxiety last year http://www.apa.org/pubs/magination/441B032.aspx that includes many of the techniques, charts and strategies that she uses. Katherine has taken a break from practice in the SF Bay area and we still use her book. Hope this is useful.

Our psychologist structured a CBT reward system that could be used by the teacher. I made behavior dollars that could be exchanged for rewards at the end of the week. We also adapted with OT suggestions. Let me know if you need more info. Joanne

Hi All - First let me say I am not a big fan of SSRIs for kids. When my dd (now 12 and 80lbs)was given an RX for zoloft 50 mg. I hesitated and gave her only 25mg. Actually, I stated by cutting into quarters and giving her 12.5. The zoloft made a HUGE difference for her eating. Before her BMI was <1% and her psychologist wanted to put her into an in-patient eating disorder program. She severly restricted food, hide food, and had difficulty swallowing. We started her on zoloft and within a couple of weeks she was eating more normally. CBT didn't work, ERT didn't work, antibiotics didn't work (much) and the zoloft really helped us turn the corner to get her to eat more. That said, our md told us to up the dose which I did very slowly. 50 mg seemed to by ok. They told us to go up again because she still had separation anxiety, trouble sitting at the table, and other behaviors. At 75 mg., she had major rages and was violent. We are back down with the 50 mg. I continue to try to add anti-inflammatories, inositol and EFA to decrease some of the other behaviors but with a kid with eating issues it is difficult. Sounds like from other posts that eating might be helped with zoloft...

This is good information and I have to add a word of caution especially for our kids. Lead is a neurotoxin and has been found in tumeric and other spices imported from India. This includes Ayervedic medicines. Here are a couple of links with info: http://newamericamedia.org/2010/04/caution-advised-about-lead-in-indian-spices-and-powders.php http://www.prohealth.com/me-cfs/blog/boardDetail.cfm?id=1227528 With off-shore manufacturing and ingredients from different countries, it can be hard to maintain quality control. A good example are the toy manufactures and lead issues. Unfortunately, lead can be a hidden toxic "supplement." Has anyone done any checking on this issue with the supplement distributors? thanks Joanne

Hi Thanks for the great survey. You are such an asset for all of this work! My daughter was in a major flare up last night from a virus. Her first episode (2007) was strep related and I don't think any of her other episodes were/are. Adding a question that reflects the pitands part of PANDAS might be useful. It is hard to do everything and keep the survey short. I certainly understand. Thanks for ALL of your work.

Hi All - Not eating is the scariest part of PANDAS for us. My dd12 limits amount of food and kind of food. When severe, she stops eating. She could not put metal (forks, spoons, etc) in her mouth so we started using chop sticks for little kids that are hooked together. She would not eat anything except white food and mostly noodles. I always said that she has never seen a noodle that she didn't like. I work at giving her dense food - smoothies with protein powder, essential fatty acids (I use flavored flaxseed oil), and anything else I can throw in and still make it taste good. I only use whole milk and ice cream is essential. If she will eat at Jack in the Box, the we go to Jack in the Box. My philosophy over the years has become that any food is better than no food and to use whatever works. I ignor my own feelings of guilt over junk food or the sideways looks of other moms. We have also used OT to help with senory eating issues (helped a little) and CBT (didn't help at all). She is currently on Augmenton ES and zoloft 50 mg. When we started the zoloft a number of years ago, she stated eating.

Hi - We did CBT and ERT with a fabulous psychologist in Oakland CA - Katherine Martinez. We had an elaborate behavior reward system that we worked with and varied for about two years. We would last 3-4 months then take a break for a couple of months. It helped with many behaviors - claustraphobia, bedtime rituals, getting to school and many more. DD's eating issues were the most persistant, dangerous and confounding. We did ERT and CBT. Our daughter continued to restrict food to only white food - rice, noodles -, would not eat with anything metal, took tiny bits and hid food. It was terrible. We switched & added an OT for sensory issues and that helped a bit. It wasn't until we added a small amount of zoloft 25 mg. that she really started eating again. Whew. I felt badly that we had put her through so much time with the CBT, ERT and OT rather than just trying the meds.