WorriedDADNMOM

I am trying to gather more info on what this means from a practical real life approach and what doctors have told you as parents of Autistic/Aspergers/ADHD kiddos. The more I research, I am trying to make sense of the whole Pandas thing and how they are related. We have no diagnosis other than Pandas and Pyrrole disorder. Thanks in advance!!!!

7 Dittos and a double Ditto for TMOM. We are ABSOLUTELY sure are we would not be in the place we are. THANK YOU ALL!!!!!

Hi Phil!!!! My dd 6 now 7, was blood tested for same stuff. We already knew about milk allergies from family history. But our issues with tics from strep came up in Dec '10. Then at our request in spring of '11 had complete blood test for allergies and our request included Mycoplasma. Had the script but did not do anything with it till Aug of 2011 when tics came back. We were not told of the results. November of 2011 she started with severe ticcing and chorea like movements and we were fighting with Ped on getting our other dd 8 on an abx post strep infection that was pretty bad too. So, needless to say, dd7's myco IgM was 5.9 H (high)with postive being >1.1 When I found this out I was very upset and still am. We did some more Azith for 5 more days and retested in November. IgM was 3.5. This entire time, she was asymptomatic for breathing or sinus issues other than normal itchy noses---thus the tics. We have since gone to a DAN/Integrative Ped. She was on two courses of 10 days Azith then a prophylaxis of M, W and Friday since about Jan. We have seen great improvement with abx and a whole host of other supplements for rebuilding the immune system. I have heard about myco being suspected in asthma, so it is definitely worth looking into. Here is an interesting article about Mycoplasma and some other links if you have not found them already. Good luck!!!! http://www.rain-tree.com/myco.htm -------------this is a good article. http://old.post-gazette.com/healthscience/20030610hasthma2.asp http://ajrccm.atsjournals.org/content/158/3/998.long http://ajrccm.atsjournals.org/content/172/9/1078.long

Sleepless, It can, does and ABSOLUTELY will get better. Try to remain calm. I would say, regular pedi's are resistant to treating anything like this. Don't waste too much time trying to convince them. I have burnt some bridges trying to convince them. Not worth the headache. Will your pedi try Azythromycin??? I would start here with getting at least a 10 day course of Azith, WITH Probiotics and start using any children's Ibuprofen until you can get to a DAN or Integrative Ped. When you go to them-----It needs to be a comprehensive overview of your ds's health. I would go to a DAN doc or Integrative Ped as soon as you can. We are on a good path right now. DD is 8 in a week or so and our situation(s) sounds exactly like your situation. We caught it early, like you I think, and we are about 14 months in. If you need anything, PM me and we can talk more specifics regarding experience and treatments. There are people here to help. Your in the right place. Go with your gut and be your kids best advocate!!!Best of luck and stay encouraged!!!!

I find all this interesting. My dd's both with Pandas.. Known strep infections in both--one asymptomatic with tics only confirmed with blood test----one normal symptoms both treated with amox. Neither were helped. Penicillin helped remove tic in younger dd. Older dd went several months post amox with anxiety, vomiting, emotional wreck. Did more blood tests on both. This blood work was done in late August and Mycoplasma Pneumonia in younger dd was 5.9 with pos being 1.1. Her symptoms were head bobbing, tremors and chorea like movements. Pedi #1 did not even tell me there was an issue with her IgM being that high. We treated with 10 days of Azithromycin and took her off. Some improvement then relapse. I think 10 more days then M,W,F prophylaxis on it for several months. I believe. She is much better up until latest known strep trigger. No tremors but tics for sure---facial one with this strep. Hope this helps on the Myco side of this. But I have a question broader than the mycoplasma only question. My question is----How can you be asymptomatic for Strep or Myco??? Especially when immune response was so high???? What does the term Vaccine Damage actually mean???? Both pedi and ID doc asked us this. Any one have any input????

My dd is on st johns wort, lithium orotate and magnesium as well as a host of other supps to combat pandas and pyrrole disorder. Hope this helps as much as I have seen it help in my kids. Ever been a checked for chronic infection? ??? Good luck !!!! Mix

Hello all!!!! I am normally on the Pandas side of this forum so Autism/Aspergers is not in my brain database and I have not "lived" it I don't think. I know very little about it. But the more I read, I am beginning to wonder about the overlap of Autism/Aspergers and Pandas. My dd was quirky to say the least. Upon age 5 got impetigo, age 6.5 came down with eye tic from asymptomatic strep infection treated with amox, then penicillin. Also the eye tic preceded by severe emotional lability. Then High fever with flu for a week and she became a brand new kid----everything improved--appetite, behavior--literally everything. Fast forward 6 more months and she starts head bob and other Chorea like movements. Confirmed very high titer for mycoplasma pnuem. This all was coupled with early quirkiness,3-4 yrs old and now at 7 almost 8. Can you please describe your journey? I have always thought my dd exhibited close resemblance of Aspergers, bi-polar. Thought like an adult, very literal, very impulsive in thought and deed. We have no diagnosis of anything other than Pandas or Pyroluria, but am wondering. We have seen great improvement in treatment for these things, but want to learn more. I look forward to your responses. Thanks in advance for sharing your story.

Linda, I sent you a PM(upper right corner) Let me know.

Yeah LLM I sometimes forget the pyroluria diagnosis my kids got along with Pandas. My kiddos are on both Primrose and omega fish oil. Thanks for reminding me!!!!

Abbe, I don't know your exact situation, But I want to encourage you. My Dd has been on abx(azith) for 3-4 month now. She is also on a host of supplements. No milk. We kinda caught this halfway early we think. Not sure if it started at 5 or 6 but by 6.5 y/o our dd became a mess with severe emotional lability, tics, dark thoughts, the whole gamut. Subsequent infections lead to mutism for periods of time, neuro tremors of head, tics and other chorea like movements. Our Integrative ped has talked with Dr T on some of his other cases. I am sure he can and will help you but this needs to be a complete overview of your child and the issues regarding your ds. Vitamin deficiencies etc......... Have you considered a DAN or Integrative Ped???? Best of luck to you and Keep up the fight!!!!!

We use Prothera/Klaire labs probiotics and Kirkman labs Sacchromyces boulardi. One is pill form and the other is powered(Klaire) All of our supplements are available but ours are prescribed. As for the Omega's, we use the real deal. Nordic Naturals Arctic-D Cod liver oil. Taste is kinda nasty. BUT----the protocol we are on is helping. We asked about resorting to pill form for gag and smell issues---many a fights but Integrative ped said no---not as good. But they are good fights since our dd is getting better. All the sensitivities----smell, gag reflex,sound, tactile issues are getting better. Also we are on a ton of stuff. Not sure of your story, but I would look into other supplements/deficiencies in vitamins and minerals as they are common in Pandas kiddos. Best of luck to you!!!!

Katie, by chance was your abx for you amoxicillin???? Both(one suspect and one for sure) my dd's had poor eradication of strep with amoxicillin. I think this is it in a nutshell coupled with other co-infections---mycoplasma for one that is common. Also, I would echo the others about pandasnetwork.org OR pandasresourcenetwork.com-------just google pandas and strep. There is a ton of info when you start looking. Don't panic but be very proactive. I would get to a DAN Ped, Integrative Ped or other Pandas literate doctor. The Facebook Saving Sammy website, this website and others have a list of docs in various states and locals that can help. I hope this helps. Private message us if you need any other help or ideas. There are many people on here that want to help. Yes keep reading. Go back in history (old posts) since there are many issues at hand. Start with the basics, try to understand then you can learn how you can help your dd get well.

Are your kiddos Pandas kids???? My dd's all had milk allergies---all presented differently. 1 with Eczema 1 with projectile vomiting and one with colic. Very interesting info. Thanks for posting.

I am sure there are more knowledgeable people on here but our dd's mycoplasma Igm was 5.9 H. H meaning high----with 1.1 was positive. Ped did not even tell us. Found out on our own after pulling the records. My gut tells me that this would be normal in your case but I am not sure.

http://www.theblaze.com/stories/mother-angry-with-everybody-after-14-year-old-given-hpv-vaccine-without-permission/

Brycemom-----------go here ] http://www.latitudes.org/forums/index.php?showtopic=5023 or the Facebook Saving Sammy Website has a doc list by state. Good Luck!!!

Are you doing any type of supplements??????? Or have you had any longer term abx??? Your post does not say. I don't understand it all but doing Vitamins and minerals, probiotics, cod liver oil with DHA, enhansa and several others with long term abx help the immune system "reset" and strengthen. In addition we do a sick protocol that has helped us. PM if you want the entire list. You must get to a Pandas/Pans/Integrative ped. Someone who has a comprehensive idea of what to look for and a comprehensive treatment protocol. I hope this helps.

Miss Anna----I would have a few questions: 1) How do you know he has Pandas???? 2) Do you know the infection and the abx prescribed by ped????? Strep, ear infection ect.......How many days on what abx??? The reason I ask is that you must target the exact infection or co infections with the correct abx. I can say after strep, 10 days amox did nothing for tic reduction. Penicillin did however take it away completely----until next exacerbation/infection with strep. We now use azithromycin which will cover strep and mycoplasma. I would get to a Pandas ped if you are not already seeing one.

I would also add-----We have had the subsequent exacerbations---full onset of tics/behavior. ABX and the supplements have helped get her back quicker we think. Now we are doing MWF azithromycin for a longer period. So far so good 2-3 weeks in. PM me if you want a complete list of everything we are on.

HanHan------If she has been diagnosed with Pandas, that is a good thing. The fact you have someone on board that actually believes in it. Our dd's both had bad reactions to strep/myco in dd6 now 7 and dd8 with Strep and EBV. Our Integrative Ped did blood and urine testing. Supposedly pyrrole disorder is closely assoctiated with Pandas and ASD. My kiddos were both diagnosed with both Pandas and Pyrrole. We have been doing long term abx(azithromycin) for dd7 who was infected longer and had MANY more of the behavior issues. DD8 got severe sep anxiety post strep---sudden onset does not come close to describing the severe change in her. DD7 and DD8 are both on a cocktail of vitamins b,d, fish oil, primrose oil, enhansa, probiotics, and several others. Our dd 7 who as been the worst has been the last few weeks been put on lithium orotate and st johns wort. Google them both. We have seen very good progress with these two in particular----we think. We are doing so much so it is hard to tell what is working. The idea is to get rid of any infections then rebuild the immune system with supplements. Control the behavior with the last two. I hope you find this helpful. Good luck and God Bless!!!!!

The only thing I would add to this is "never having strep" is almost impossible for kids. They are germ factory's with a super distribution highway. After reading all the stories and similarities--- I am of the belief that with our kiddos having an immune issue, strep goes undetected as can mycoplasma which was the case for our dd6 now 7 and dd 8. They both had amox for varios infection and strep. I believe both were never eradicated with the amox abx at 4-5 years old for ear infections or impetigo. Early on we all just assume the abx does the job. Then when all these issues start being evident in the form of tics, ocd, odd, adhd, twitching and chorea, it is hard to go back and figure it all out. I would wonder what you all think??? My main questions are which came first----chicken or the egg???? Strep caused the immune issue???? Immune issues then allowed subsequent infections (myco etc) to cause pandas and tics???? Vaccines caused immune issues thus the asymptomatic(untreated) or bad reaction to infections???? We have a phone consult with our Doc and we want to ask these questions. I am curious what the general belief or consensus is.

Colleen I am not sure if you are doing the whole supplements thing but our Integrative ped has put our dd7 on lithium orotate and st johns wort. They have seemed to help. Keep in mind we are throwing every thing less the kitchen sink into my d's body to get her well. We are taking the long slog approach if that is what it takes. With the addition of these two additional supplements along with abx and many other vitamins we have seen great attitude and behavior improvement. Hope this helps.

Also, just google pandas and strep youtube pandas today show. You will find more than you can imagine. The fact that you are here is a good sign. I would not waste too much time on trying to convince people or regular docs/peds for that matter. Get to a DAN Ped, Integrative Ped or some Pandas literate doctor asap. Inform your self and follow your gut. Good luck and God bless!!!!

Yeah I would add that getting rid of the underlying infection is first and foremost. We have been seeing improvement with lithium orotate and st johns wort. These were prescribed by our Integrative ped. They have helped. Hope this helps.