nurseg

Hi Lisa, Thanks for your reply. We did try Pennicillin VK back in June for 6 wks, before the month of Zith. Not much help with it either. In terms of my son before the strep, he never had tics. He has always been a sensitive child(he reminds me of myself as a child), maybe a little nervous, but nothing I would label as "abnormal" before the strep. He has had some OCD(mild), and definite behavior changes. He has had some bad outbursts of anger especially when doing homework since this started in March. This behavior is totally out of character for him. He has always been my "easy" child. Very sweet, easy going, and mild mannered. The tic is the main problem because it's so obvious, my concern is someone at school will make fun of him which will crush him b/c he is so sensitive. I've sent an E-mail to our DAN doctor. Hopefully, he can prescribe more Keflex at a prophylactic dose. Thanks again, Glenda

Hello everyone, Just wanted to know if anyone has a PANDAS child on prophylactic Keflex, and if so, at what dose? My son has finally been diagnosed with PANDAS after having a second strep infection 2 wks ago. His first was back in March and 2 days later started having a neck/head jerking tic. I've posted here a few times, but read several times a week, and have so much confidence in the ones who post here. We were on 10 days of Keflex (just finished the last dose on Saturday). Those 10 days were AWESOME!! We saw very few tics( if any) most days, mood was good, and he was sleeping all night in his bed. This is the best he's done since this all began. We started Zithromax prophylactically yesterday morning, and can already see we're backsliding a little. His tic has increased and he came to my room the last 2 nights. I just wonder if we should give the Zith more time, or that possibly he's resistant to it? He was on Zith for a month back in June, and we didn't see much of a difference then either. Any advice/suggestions would be much appreciated. Thanks, Glenda

Hi Sarah, We heard from our DAN's partner yesterday regarding the labwork. His AntiDNase b was "normal" at 168 with the cut-off at 170. I explained to her this is an increased number from the less than 50 range from his titer in March. She said this doesn't confirm or exclude PANDAS, but did want Austin to continue his Zith regimen until Dr. Kalb returns on Friday. She also called him in a Prednisone taper he'll start tomorrow. She also said he had a positive Epstein Barr test, but no acute Mono. She mentioned some kids get tics after viruses, and this could possibly be related.This just confuses me more, and gives more questions that I'm sure will get different answers. We started epsom salt baths Thursday, and I have noticed(?maybe) some help in the tics. He has slept through the night every night since re-starting these(usually ends up in the bed with me and his dad 3-4 per wk). How much of the omega 3 do you start on in children, or is there a childs version? Anyone with any additional input would be much appreciated. Glad the site is back up, almost went into panic mode. Thanks, Glenda

Chermar and Faith Thanks so much for your input. I have thought about the chiropractor, but have not tried it. I'm not sure how aggressive they are with kids. I would be uncomfortable letting them manipulate Austin's neck to much. With the ones you've used do they manipulate much? How often does your son go? Does insurance usually cover this? I haven't tried any magnesium other than the Kids Calm (powder that he hated to drink, even in juice), and the epsom salt baths. Neither seemed to help, but we are trying an epsom salt bath tonight. Are there other forms of mag in pill for kids, or is there a certain mg to start with. I'd like to try some supps, but have been unsure of what to use and the proper dose for his age/weight(7yrs-approx 70#). We haven't had any other treatments outside of the ATB's, and the Tenex. The neurologist mentioned Tourette's, but there is no documented family history of this. I do however, knowing a little more about tics now, think there may be some tics within our family. We did give him a probiotic while on the Zithromax, and milk and yogart with probiotic cultures in them. I'm going to call tomorrow and check on his labwork. Hopefully, the titers are back. If they're not elevated do you guys think he could still be PANDAS? I've read of some cases where the titers weren't elevated? I just can't get past all these major changes starting after this strep. If the titers are normal, I'm going to request a steriod burst. Anyone seen improvement with this? Is it more a temporary relief? Glenda

Hey Pudgeo, My ds had some very bad OCD for a while but I started him on a supplement that really helped ALOT! Our naturopath works with NeuroScience and they have a product called Kavinace, it has done wonders for us. Here's the website, www.neurorelief.com, and you should be able to find a list of doctors who distribute their products. I have not seen a reduction in tics, though, but the OCD was soooooooooo bad so I'm just happy that he has relief from it for now. On the PANDAs front here on this thread: I have read that you may have to try MANY different types of antibiotics to help the body heal. Unfortunately, the money spent can really add up. My ds has not been diagnosed with PANDAs but I'm considering getting his strep titers checked just in case b/c he started the OCD stuff after a strep infection this winter while the tics had started a few months prior. Bonnie Thanks for all the advice. I really appreciate it. Our DAN ordered alot of labwork yesterday. I know the titers were rechecked, but not sure what else. I'm not familiar with a PANDAS/OCD panel. What does this consist of? I'm really hopeful the labs will show something, and luckily our BCBS insurance pays all of the DAN visits except the $15 copay. He did say we could try a steroid burst if the titers were normal. The OCD part (so far) is not as much of a problem as the neck jerk. He had the worst one I've seen last night. I had tucked him in, and was reading a story when he bolted up in a sitting position and jerked back 6 times in a row. Are there any particular supps for mainly tics? We've tried epsom salt baths and kids calm at the initial onset for 3-4 wks without a change. I'm just so frustrated that I can't do more to help my little boy. Our neuro mentioned IVIG at our first visit, but said this was a last resort. Our ped. said we couldn't use the Suprax long term, so that's out. We also saw a professional councelor yesterday for the first time b/c I'm worried mainly about the social aspect of this problem. Kids today are so mean, and Austin is so sensitive. I just wanted him to be prepared in case someone did say something, and how to react to them. She felt he had alot of anxiety issues that he was keeping inside, She said his neck muscles were tight and she felt him clenching his teeth while feeling around his neck. She wants us to check with the dentist about TMJ, as he had some tenderness too. So, I feel like everyone we see has different answers to my same questions, and I'm constantly worried I'm going to give Austin a complex about seeing these different doctors so often. I just try to remember how lucky I am to have my little man with me, as I know it can always be worse. Thanks again for listening, Glenda

Hi everyone, I really need some help on what thoughts you have regarding my 7 yr.old son. I've posted his history before, but just a refresher.. He started having an intense neck jerk two days after being diagnosed with strep. He never had any tics before (or strep that I know of), and has never had issues with behavior, school, sports, ect. He has always been healthy with the exception of his first year of life, when he had multiple ear infections. He has always been a sensitive kid, but since all this started he has shown some anxiety/OCD symptoms. His first titers 5 days after the strep were normal. His pediatrician sent us to a ped. neuro, who thought he had TS, PANDAS, or Sydanam's Chorea. Put on Tenex for 4 wks, which helped reduce the tic about 70%. Thankful to have something to help, but I know this only maskes the tic. I want to know why it's there, and treat the cause. Between follow-ups to the neuro my son got a stomach bug and a sinus/ear infection,and was put on 10 days of Suprax. This, along with the Tenex, almost completely resolved the tic for the 10 days on the ATB. At f/u with ped. he then felt my son had PANDAS, and put him on Pen VK. No change after six wks of this, and started twirling his hair and popping his jaw, which were new. Seen a DAN after that was recommended on this site, and he felt my son had PANDAS. Put on Zithromax for 4 wks with no change, maybe some worse as the neck jerk was mainly single jerks and now most are double, triples, or more. We seen him today and he thinks now he's not PANDAS. He did more labs(titers included), and said he didn't want to continue the Zith unless his titers are high. Problem is he doesn't want to say what he thinks the tic is related to. Would rather the neuro determine this??? He wants us to send off urine samples for Microbial OAT profile , Porphyrins, and Pterins. I'm thankful my son's case is milder than some I've read about here, and that so far the docs have all been trying, but I can't help but feel the correlation of the strep with sudden tic onset is not just a coincidence. Am I crazy to think this? Any thoughts on any other diagnoses? Should I proceed with the urine testing as it's fairly expensive, even with partial insurance coverage. My son has never really had allergies/asthma problems? Any supps that could help? I apoligize for being so long. Thank you all. This site is the only thing keeping me sane. Glenda

My son is 7 y/o and had his first strep infection officially diagnosed 3-13. On 3-15 he started with a dramatic neck jerking motion I'd never seen him do before. His titers 5 days later were normal, but he had been on Amoxil that 5 days? We've since seen his pediatrician several times. a ped. neuro twice , and are due to see the DAN doctor for the second time tomorrow. He's been on Amoxil, Keflex, Suprax(these all short-term for the infection itself), as well as Pen VK for 6 wks,then followed by Zithromax for 4 wks. While he is some better from the initial tic, the neck jerk is still there, along with other issues I feel may be related. I am at a loss too. The neuro finally said PANDAS at our 2nd visit. The DAN felt it was this from the beginning, but a recent E-mail he told me if the Zith hadn't helped much it "probably" wasn't PANDAS. I'm going to ask him LOTS of questions tomorrow, and hopefully get titers redrawn along with a steroid burst trial. All I can do is continue to pray for my sweet boy. I feel helpless. Glenda

Hi cmnsahm, I think I would request a culture if I were in you position, I would also ask the pediatrician to do strep titer blood tests. I'm new to this PANDAS diagnoses, but your son sounds like a possible PANDAS. You might also try to google DAN doctors in your area if your pediatrician is less than understanding about these problems. My son and I have been very fortunate to have sympathetic doctors working with us so far. However, it took a short video feed I made a few days after his tic started to convence them all(pediatrician,neurologist, and DAN) my son had a problem, as none of them seemed to notice it at the apt. Hope this helps. Glenda

Hi Tami, What is the site for the test kits, and do you remember a price/quanity? I have a general practitioner I used to work for that will let me bum a few tests from time to time, but would like to get my own supply. I would like to compare prices with this site you mentioned and the GP's supply company. I agree having the rapid tests on hand would be convenient. My sons pediatrician just always sends off a culture in addition to the rapid strep to prevent a false negative, but his office is an hour away.Thanks! Glenda

my son was recently diagnosed with PANDAS. He also is 7 yrs old, and has a neck jerking tic. He started with this tic 2 days after being diagnosed with strep back in March of this year. I agree with the other post about getting a culture versus a rapid strep. I would also ask the pediatrician to do strep titers(ASO and AntiDNAse). We are currently taking Zithromax 250 mg daily, but no real help after 3 wks. His tic is some better from the initial stages, but it still breaks my heart to see him do it. Stick with this site,as it has so much valuable information, and everyone one is so willing to help. Hang in there. Glenda

I was reading each reply, and Tracy's story was familiar with mine with my son. Normal pregnancy, thought a normal labor/birth, but his heart rate lowered to the 50's about an hour after my epidural. The nurse came in and put an internal monitor on his scalp, and oxygen on me. They also gave me, I think Turbutiline, to slow my contractions? His heart rate came back up ,but I had to wear the O2 until he was born. He was fine after being delivered. No assistive devices, no problems breathing, and his Apgar score was normal. Has always been healthy except for the first year of life, he had mutiple ear infections. Guess it could be related???

I'm pretty sure he got the Keflex absorbed before the vomiting(took it 6 hrs. before), and I can tell there has been some improvement. I guess every child's progress is different. Has your child taken any steroids? Do you know if this is something helpful?

Hope anyone out there with any feedback on typical treatment protocol in PANDAS children once they finish their initial antibiotic will reply.I've contacted a few of the ladies on this board with other questions(thanks for the replies), and I'm relying on this site for much needed help. My 7 yr old son has not been diagnosed yet with PANDAS, but from what I've read he may have it. He sees his pediatric neuro for the first time 4/2. He was diagnosed with strep 3/15 and started having neck jerking tics 3/17.He was on Amoxil for 5 days initially, then his pediatrician changed it to Keflex(was suppose to be a 10 day supply but he just took the last dose tonight for only an 8 day supply?) We are also doing Kid's Calm daily,and Epsom salt baths nightly. His tics have improved slightly, but is still having them frequently and daily. Where do we go next? Someone mentioned a Prednisone burst if the strep is gone(pediatrician doing a throat culture next wk,and ASO/Anti-DNaseB were drawn last week)? I'm trying to be patient, but I was hoping to see more progress with the tics than I have at this point. Also he threw up a large amount at 3:30 this AM,and has had nausea all day(the worst tonight before bed). Is this common with this disorder?Could it be yeast? He has missed several days of school this month. Before the strep, he missed only two other days since starting Kindergarten. How common is it for other changes to come on(other motor tics/sensory tics/OCD,ect) if any. The head jerking is the major one we're seeing. We have noticed him making mouth movements and twirling his hair occasionally, but his teacher says he's not being noticed by the kids in the classroom with any of the tics so far. Does anyone have a website to find a DAN or Naturepath doctor? Thanks in advance for reading this lengthy post. I appreciate any advice. Glenda

My 7 year old son started having neck jerking motions 3/15 for the first time. He was diagnosed with strep throat 3/13 and has been on Amoxil since 3/13. I'm very worried about PANDAS and I'm not sure how to proceed next. I spoke with his pediatrician today and he is going to refer my son to a pediatric neurologist, but says it may be 8-12 weeks before he'll be seen. His tic has become more frequent and repeated even since 24 hours ago. Do you think it's PANDAS or TS? What can we do between now and this specialists appointment? Any advice to help would be appreciated.