JJMom39

I am so glad this has been a better day, Wilma. I am praying for you and your daughter.

That helps so much! Thank you! When he is down to two tablets per day, should I give one with breakfast and one after dinner? Or would it be better to move the second one up to later afternoon with a snack so that sleep might not be so much affected? I'm starting to freak out about giving him steroids. My non-PANDAS ds had to take them for severe allergies/asthma and he was fine, but I had a bad experience with them so I don't know what to expect!

My ds is supposed to start a steroid burst tomorrow. This will be his first one. His neurologist called in an Rx for a Medrol dose pack, but the pharmacy said the dose pack is on national backorder so she switched the Rx to prednisone tablets, 5 mg. The dosing instructions are confusing to me. They say "Take 4 tabs daily for 3 days; then 2 tabs daily for 3 days; then 1 tab daily for 3 days." The instructions do not say if I am supposed to give the tablets all at once, or break it up throughout the day. I had hoped to start the first dose first thing tomorrow morning and of course it's too late to call the office this evening. Has anyone done a burst like this? If so, did you give the higher doses over the course of a day or all at once? I'm guessing it would be better to break up the higher doses rather than give them all at once (20 mg at one time seems like a lot!), but I really don't know. Do I give 5 mg in the morning, then 5 mg at lunch, then 5 mg in the afternoon, then 5 mg at dinner? Or do I give 10 mg then later in the day another 10 mg? Any input would be much appreciated!

The names and contact info below are from the Saving Sammy Facebook page list of dr's who are considered to be "PANDAS-friendly." And, the Helpful Threads section at the top of the forum has contact information for the handful of dr's who are considered to be the PANDAS experts. ARKANSAS Richard Livingston, MD 10310 Mayo Drive Barling, AR 72923 479 494-5700 Matthew Crouch, M.D. Psychology & Counseling Associates Center for Children and Adolescents #1 Sunbridge Drive Fayetteville, AR 72703 Phone: 479-442-KIDS Fax: 479-443-9554 David Jackson, M.D. http://www.mana.md/physician/djackson.html Northwest Arkansas Pediatric Clinic Urgent Care Center 3380 N. Futrall, Fayetteville (479) 442-7322 Wellness Center 3383 MANA Court, Ste 101, Fayetteville (479) 443-3471 Lowell Clinic 117 Dixieland, Lowell

Welcome to the forum. This is a wonderful place for advice, information and support. I ditto LLM's suggestion to advocate for full-strength abx for as long as you can get them. When my ds8 was diagnosed a couple of months ago, he was first put on Omnicef for 5 days, which did not help him. He was then put on 5 days of azithromycin. This helped him a lot, but a few days after he finished the azith, I was told by two other dr's that a strep infection needs to be treated for 10 days, regardless of what abx is being used. So even though azith is typically used for 5 days, for a strep infection it should be used for 10 days. After that, my son took another 5 days of azith, and then a subsequent 5 days because I wanted to make sure that he was fully covered. That said, if a child has not cleared the infection after finishing treatment they should continue taking an abx until it is cleared, so 10 days might not be enough for every child. It's also possible that if an infection has not cleared a new abx will be necessary. As already said, the timing of re-testing is important. If the swab is negative have a culture done as well to make sure there is no infection. After active infection has cleared, many PANDAS kids take azith or augmentin prophylactically, but there are other abx that are used. Sometimes it takes a little bit of experimenting to find the one that works for your child. If you are considering consulting with one of the few specialists, it can be helpful to make an appointment now as there can be a long wait for some of the docs. The helpful topics section at the top of the forum has information on these specialists.

So grateful for this thread! My ds8 sometimes has slow word retrieval when telling a story, and it can take him a little while to actually form the word. And, if he is telling a story he cannot stop if interrupted. Even if it is a necessary interruption, he will keep talking--it's like he can't stop and then start again at the same point. He has to finish the thought, story....This is another symptom for which I now have a context. We also have selective mutism and if he is upset he will use "signs" instead of speaking.

Type II diabetes for my father and paternal grandmother, and for my father-in-law. We are dealing with PANDAS only.

Thank you, Vickie!!! This is so inspirational for those of us who are already dealing with PANDAS, and it will educate others and help many kids/families!

wanted to also mention that my ds has had troubles with apologizing and admitting he's done something wrong. "it's your fault". "i knew that wasn't right". it's something that to an untrained eye looks like a bratty, obnoxious kid but i believe is actually a symptom. refusing to use manners such as 'please' and 'thank you' also presents. it's stunning -- when he's in an exacerbation, it's a harsh refusal to say 'please' but when healthy, it's automatic. this morning, he somehow stepped on my face while climbing into bed btwn me and dh. i said, "OW!". he said, "sorry". a while ago, he would have stubbornly fought that it was my fault for my face being there. i think sometimes the signs of healing are small and subtle -- but i'll take them!! This is very helpful for me to know as well!! My ds8 does not want to admit when he has done something wrong, and he has also had a hard time apologizing for things. Instead he will blame the other person involved. Most of the time when he has done something wrong, he will adamantly deny it and will even construct an alternate version of what happened. Even if we saw what happened he will try to convince us that something else took place. And he seems so convinced of his version of things. I was really starting to worry about this because our OT told me she would interpret this as "fantasy thinking." While it might be that, I do think it is related to PANDAS. Before his first episode he was not this way at all. I am concerned about this though because even though he is in a better place than he was a couple of months ago when he was in an exacerbation, he shows no signs of moving away from this defensiveness. Maybe it has become an ingrained habit? Or maybe he is still healing. He has become much more polite and considerate though. He also refuses to talk about or admit that anything is amiss with him. When we try to talk to him he plugs his ears and says "blah, blah, blah..." He will then hide under a pillow or run away. This is also what he does when we try to talk to him about anything that makes him uncomfortable. It makes it very hard to have a discussion or to reassure him. We are very concerned about this also. We want him to be able to process things that are uncomfortable for him. We are in the process of looking for a therapist to help him develop coping skills for the anxiety that underlies this. (He worked with a therapist and got to a much better place with his intense nighttime and separation anxiety, but we have to change therapists for insurance reasons.) What can you do for a chid who refuses to discuss anything uncomfortable??

Thank you Jan, Trudy, and Shelia! This is a very valuable document. I am looking forward to sharing it with our OT. My ds had the diagnoses of dyspraxia, dysgraphia, hypotonia, and developmental coordination disorder before his PANDAS diagnosis, and his OT was one of the first to see how much things changed for him during and exacerbation and now how much things are improving as he heals. She was the one how made a connection with dopamine as the common factor among all his issues, and although she didn't recognize the problem as PANDAS, she was right in there trying to find the common denominator. This document will help a lot of professionals and families.

I have experience with this Dr. I will PM you.

My ds8 has low ferritin also. His level was 15, with a range of 7-142. The ped who checked it said that 40 is optimal (in regard to the range of 7-142). I was not surprised he was low because he does not eat much red meat or other iron-rich foods. He has been taking a chewable iron supplement made by ProThera called "Chewable Iron Chelate." It has 30 mg of iron per tablet. It's supposed to have a cherry flavor, but he does not like the taste. He tolerates it though.The ped who diagnosed him with PANDAS checked ferritin along with many other things in his initial blood work. I don't think the reason for checking was specific to PANDAS. She checked many other routine things at that time. I am very interested to know that low iron has been correlated to ADHD. Ds did not have attention problems until this school year. It is amazing how much his attention has deteriorated over the course of this year. It has only been in the last couple of weeks that we have started to see improvements in that area. I think his attention has improved slightly because of abx treatment for PANDAS. He was undiagnosed until late Feb. He also has very low zinc, which has a relationship to attention problems also. I am hoping and praying that his attention will continue to improve. It's looking like we are going to have to pull him out of private school because it's just too much for him : ( I can't imagine how he will manage his anxiety in another school setting though. I hate #**&^%$ PANDAS.

My ds was put on a 5 day course of Omnicef. Maybe that is why it did nothing for him. The dr. who prescribed it only uses 5 day courses at a time. I had two other docs tell me that a standard strep infection needs to have a 10 day course of abx, regardless of which one is being used. We have moved on from the original dr. who prescribed the Omnicef because she is so rigid in her approach. I think I may have asked this before...but I don't remember if it was you or if I had gotten a response. When your son was put on Omnicef in March, was it a 5 day dose or a 10 day dose? Thank you.

I was just pondering this same issue this evening. My ds8 has been on prophylactic azith for about a month now. He had a strep infection in early March and a treatment dose of azith cleared that after Omnicef did nothing. Just this morning I found out that the neighbor boy with whom he played all yesterday afternoon tested positive for strep this morning. Ds seemed a little off today, but not so much that I could say he is having symptoms, yet. I put him on a full treatment dose of azith as soon as I found out about the neighbor, and I will continue that for the next several days. But, if ds does happen to develop a strep infection, I would probably ask our ped. for clinda. Where I live (central OH) there is a high degree of resistance to azith, amox, and Omnicef. Because of that my ped's office is using clinda or Keflex for strep now. (A different dr. put ds on the Omnicef that didn't work in March.) Resistance is different in different regions though. You could ask your ped. if he/she has any info on what resistance is in your area. That might help you select the abx to try. If he/she doesn't have that information, I would feel better using something other than the standards in case of resistance. If you go with something that hasn't been used as much, maybe there would be less resistance that way?? I'm not that familiar with Keflex, but if my ped. suggested that I would be okay trying that too.

Norcal--I'm so sorry this is such a rough time for your son. Sending good thoughts for your family.

SOOOOO happy for you and your son, and thank you for sharing the wonderful news!!! The way you described your son's issues at school is an exact description of what my ds struggles with at school. We have been feeling so discouraged and thinking that maybe the onslaught of auto-antibodies will be too much for his brain to overcome. But your terrific news gives me hope that there can be healing and wonderful improvement!!

I said I would post results of my ds8's recent MRI when I had them so here they are ....the scan was normal. That is what I was expecting, since we know that MRI doesn't always detect inflammation in the b.g., but I feel sort of disappointed by that. That seems silly though because we know the inflammation is there. I guess it just would have been nice to have confirmation of that or something.

Forgot to mention that there are a handful of docs in the country who are considered PANDAS experts. Some of them do phone consults. Dr. K. is one of them. You can check out his web site. I'm not sure which of the others do--someone else might be able to chime in on that. And, if you haven't already, check out the Helpful Threads folder at the top of the forum page--there is a lot of great information there. http://www.webpediatrics.com/

I used colloidal silver on a short-term basis when I was sick with a virus a few years ago. My ND/herbalist recommended it. I was taking many other things at the time so was not sure how much it helped because I could not isolate its effects. The one thing I have heard about colloidal silver is that you have to be careful not to use too much or use it for too long. It can cause argyria--the skin becomes blue or blue-ish gray in color. I think that can only occur at really high doses, but you would have to look into that. I would consult someone who is qualified to recommend how it should be used--someone like an ND or an alternative medicine practitioner or someone with a good knowledge base on supplements.

There is a list of doctors who are considered PANDAS-friendly on the Saving Sammy Facebook page. (Saving Sammy is the name of a book written by a mother whose son had severe PANDAS.) The following docs are listed in California. I don't know which if any would be close to you so I will just post them all below. Has your son been sick at all lately? Have you considered having him tested for strep (with a rapid test at the ped's office)? You could do that without mentioning PANDAS if you think they won't be open to PANDAS. Some kids have no symptoms when they have a strep infection. My son had no symptoms with his last bout of strep throat. The only indication we had that there was something wrong was his PANDAS symptoms. If you have a rapid test done and it comes back negative have them send it our for a culture. You mentioned testing for PANDAS. There are no diagnostic tests for PANDAS--it's a clinical diagnosis--but the blood tests that are done that can sometimes aid in diagnosis are the 2 strep antibody titers. These are the ASO and AntiDnaseB tests. They indicate if there has been a recent or fairly recent strep infection. Some kids with PANDAS will have elevated titers, BUT some kids will not. Normal titer levels do not necessarily rule out PANDAS. Looking at these things would be a good place to start. It is best to get to a dr. who is knowledgeable about PANDAS. Have you had a dr. look at your son's jaw? It seems important to have that checked also. My son was diagnosed with PANDAS recently so I am still learning, but there are many experienced, wonderful people here who will be able to help a lot. CALIFORNIA Northern Dr. Margo Thienemann 900 Welch Road Suite 207 Palo Alto, CA 94304 325-3241 mthiene@gmail.com Sunjya Keshava Schweig, MD 616 Petaluma Blvd. N Suite c Petaluma, CA 94952 778-3171 Southern Robert W. Sears, MD, FAAP (“Dr. Bob”) 26933 Camino de Estrella, Suite A Capistrano Beach, CA 92624 493-5437 Read his profile at this link: http://www.askdrsears.com/about.asp Thomas Lin, MD Irvine Kids` MD 4634 Barranca Parkway Irvine, CA 92604 Telephone: 949-681-0777 Fax: 949-654-7668 Email: autismmd@cox.net Website: www.irvinekidsmd.com Gerald Maguire UC Irvine Medical Center Bldg 3 - Rt88Irvine, CA 92697 Phone: (714) 456-5770Fax: (714) 456-8499Email: gamaguir@uci.edu Jonathan Auth, MD Valencia Pediatric Associates27867 Smyth Drive #100Valencia, CA 91355(661) 294-2229 Office(661) 294-8399 Fax info@valpeds.com Center for Cognitive Behavioral Therapy Barbara Zebb, Ph.D. 27401 Los Altos, Suite 275 Mission Viejo, CA 92691 Phone: 949-226-9626 Toll free phone and fax: 877-230-5429 Website: www.drzebb.com Dr. Harry Pellman Edinger Medical Group Fountain Valley/Huntington Beach, CA 714-965-2500 Dr. Henry Cramer 11480 Brookshire Avenue Suite 301 Downey, CA 90241 562-231-2440 The following three doctors all worked together and saved a child. Dr. Christina Friar, child psychiatrist 4851 Enfield Ave. Encino, CA 91316 (818) 708-2575 Dr. Kenneth Keer, pediatrician 5525 Etiwanda #212 Tarzana, CA 91356 (818) 91356 Dr. Joan Browner, clinical psychologist 17547 Ventura Blvd. Suite 310 Encino, CA 91316 (818) 995-0368

I cannot help with the IgE levels, but do have one thought/comment. 5-htp affects serotonin and GABA affects the neurotransmitter GABA. The neurotransmitter GABA is the main inhibitory neurotransmitter, but supplementation with too much GABA can cause anxiety or anxiety to increase. That happened to me after taking GABA for a while--it initially helped, but when my level became too high I became more anxious. Maybe check the dose and keep an eye on the dose and any increased symptoms. I know with other things going on it can be tricky to isolate what is causing what though.

Eileen-Because I am new to the world of PANDAS I'm sorry I can't be of much help other than to offer a hug and support. I can tell you that very recently our ped told me that she now uses only Clinda or Keflex for strep. There is too much resistance to azith, amox and Omnicef where I live (central Ohio) so Clinda and Keflex have been effective. And she uses Clinda to clear strep in a carrier. Can your ped order a culture with sensitivities?? I do not know if Clinda is immune-modulating or not. You could re-do the rapid and a culture at the end of the course of Clinda to see if the strep has cleared. At least that is what our ped suggested to me with my ds's last episode of strep. He took azith for that infection (the azith was not her idea), and she said he needed to be off of that for 5-7 days before being re-tested. I do not know what the interval would be with Clinda, but I would assume it would be much shorter. When I asked our ped if that rapid and/or culture came back positive how we would know if that meant the infection had not cleared or if that meant ds was a carrier, she said usually a positive with no symptoms would mean carrier. That confused me though because strep infection can be asymptomatic. Anyway, re-testing is something to ask/think about. Have you ever had your dd tested for carrier state? Does she have her tonsils? When was the last time your dd had strep? Just wondering if this is a new infection or one that morphed after exposure to the abx she has been taking. Wish I could be of more help! Sending (((((hugs))))))

L-theanine is a supplement that can be used for sleep problems and for anxiety. It is an amino acid supplement. I use it myself and have liked the results. I do not know what the dosing would be for a child though. According to my acupuncturist it is important to use a brand that incorporates the Suntheanine brand of l-theanine. (I don't remember why though--which is true of most things these days!) I have always used the Enzymatic Therapy brand but there are others that have the Suntheanine form of l-theanine.

My ds' recent ASO and AntiDnase B titers were a little higher than your dd's and the last strep infection he had that we knew about was two years prior to those labs. He ended up with a positive swab for strep about 5 weeks after these labs were drawn. So whether or not his titers were high because he had an asymptomatic infection before the titers were checked or because an infection was present then but not yet symptomatic I do not know. You can have strep infection and have no symptoms so it could be that your dd has a current infection, or had a recent infection that you did not know about. With my son's recent infection he never did show symptoms. We had him swabbed b/c his behavior was continuing to deteriorate. I second what Peglem said about having your dd swabbed and re-checking titers, and about seeing how she responds to being on abx. If you can bully your ped into rxing zithro that's a good one to start with.

My ds had his first PANDAS episode at age 6 and his most prominent symptom was severe nighttime anxiety. It would start around 5:00 and he would just stare out the window and watch and watch. He would never say what he was looking for but he had a look of sheer terror on his face. This anxiety continued through bedtime and all through the night. He would shake, scream, cry, and say he was so afraid he was going to die. My ds's fear eventually became about the house burning down, but at first it was an unspecified fear. We did not have a PANDAS dx until recently so this first episode went completely undiagnosed. His extreme anxiety went on for months and months even though the strep infection he had about 5 weeks after his anxiety started was treated. He also had daytime separation anxiety for a long time, and that has never totally resolved. With therapy his anxiety eventually became manageable, but it took many months. Separation anxiety is a common symptom in PANDAS as well as anger and other anxiety. Since your son is showing symptoms again it could be that his last strep infection did not completely clear or that it is a new infection. When he was swabbed recently was the swab negative or was the culture that was done after the swab negative? Even if there is no apparent strep infection there can still be neuropsych. symptoms since those are caused by the auto-antibodies attacking the basal ganglia, and the autoimmune reaction can continue for some time. Strep titers do not have to be out of range for there to be strep and/or PANDAS. Some kids with PANDAS do have worsening symptoms when they are just exposed to strep or other bacterial or viral infections so it could be that your ds doesn't have strep now but might be reacting to having been exposed to it or something else. Or he could have a viral infection that is stirring things up. And as others have said since you have a known tick bite consult an expert in Lyme to rule in or out other possible infections. The abx regimen would be different for different infections. The soreness in his legs/elbows could be a PANDAS symptom or a Lyme symptom, or possibly both. My ds has pain in his legs with strep infection. There was a recent thread here on body aches http://www.latitudes.org/forums/index.php?showtopic=12993 I am sorry that you are going through this!!