3boysmom

Quick question...I know that noise making and sounds can be vocal tics, but I've never heard or read about this particular thing that my 8 year old does. (He is the non PANDAS son that we are in the process of seeing if he also has PANDAS.) When this son talks, he seems to have the "hiccups". Very slight and not rapid or anything. He will be talking and then in the middle of a word, it sounds like he has a very small hiccup. Is that a vocal tic or just some type of voice/speech problem? Seems odd to develop a speech problem at age 8 (began 6 months ago). Does this sound familiar to anyone else?

Emuls, I did not have trouble getting the T & A surgery because they did have big tonsils and when they had tubes in their ears years ago, the ENT said that they will probably need to come out some day. On another note...the ENT was nice and did not tell me that he was not a "believer", but did say that he did not see the purpose for culturing the tonsils and that he would have shown strep somewhere. However, he did agree to do it...we go Thursday for a post op appointment...I wonder what he will say now. Remember that he never showed positive for strep, so I guess "running" them in for strep tests all the time was still not good enough. I did ask why he had high titers (why was he producing antibodies to fight strep) if he hasn't had strep. He said, "You have questions for which we have no answers." Just pointing this out in case your ID doctor tries to tell you the same things. Good Luck to you and if you think the tonsils will someday need to come out, better now than later. My 21 year old niece just had emergency tonsil removal surgery and recovery was not easy. Vickie, Our Cunningham tests are ready and were sent to Dr. L. I wonder where you go from there? Will she email, call us, we call her, or do we need to fly to see her to get the results. We asked Kathy to send us a copy. I guess we will know soon. Our pediatrician is on board to a point, but he will probably not give antibiotics for that son because he does not understand the "big picture" of all this. But he is very nice, smart, & caring man and here in Texas....he's all I've got.

I know I have asked this before, but that was before the newest events in our house hold. How can you know when your asymptomatic children get strep? 10 year old with PANDAS and (9 year old brother and 8 year old brother): Dr. L asked about the brothers, we mention the 8 year old getting head tics and the 9 year old getting HSP all at the same time as the 10 year old got PANDAS. They were all mildly sick with a one day fever and no "strep like complaints"(One year ago). She asked for their titers to be tested and check to see if T & A surgery could be a possibility (and culture the tonsils when they come out). Well I have run the kids into the doctor for countless rapid and 72 hour strep tests over the coarse of this year and they are always negative. Well the 9 year old's titers came back almost 800 and the 8 year old with head tics, almost 500. The 9 year old was treated for strep after he had HSP (that's how we knew he had step) but it has been almost a year...so maybe that would explain a bit of the high titers..? The 8 year old has had no signs of strep at all! He has had MANY rapid and then followed by 72 hour strep tests...ALWAYS negative. Actually, he never even appeared to be sick in any way: no rashes, runny nose, sinus issues, fever, sore throat, head ache...ONLY ran him in for Strep tests when someone in his class had it and I didn't want him to expose the son with PANDAS. Tonsils came out last week and the removed tonsils cultured positive for strep! How long has he had strep? He had a strep swab before surgery. Two weeks of antibiotics and the head tics, vocal tic and hyperness are no longer there....what does this mean? Will they come back now that the antibiotics have ended yesterday or was it the strep in the tonsils causing this? How will I ever know if they have strep without a single sign or positive strep culture? Kathy emailed today to say that the 3 boy's Cunningham test results were done and sent to Dr. L. We asked for a copy to be sent to us...maybe we will know tomorrow if I should now add our family to the many that have more than one child with this illness. Prayers please, Linda

Show him Vickie's UTube as a starting place.

TMom, I agree 100%!

He is not the PANDAS son.... As far as we know. He is not the son that she saw and we have called and emailed, but with no response back. When the Cunningham tests come back, we may need to take another trip to see her ( with all three boys.). Expensive flight from Texas!

Just wanted to add a quick comment about what we are just finding out: 10 year old with PANDAS and (9 year old brother and 8 year old brother) Dr. L asked about the brothers, we mention the 8 year old getting head tics and the 9 year old getting HSP all at the same time as the 10 year old got PANDAS. she asked for their titers to be tested and check to see if T & A surgery could be a possibility (and culture the tonsils when they come out). Well I have run the kids into the doctor for countless rapid and 72 hour strep tests over the coarse of this year and they are always negative. Well the 9 year old's titers came back almost 800 and the 8 year old with head tics, almost 500. The 9 year old was treated for strep after he had HSP (that's how we knew he had step) but it has been almost a year...so maybe that would explain a bit of the high titers..? The 8 year old has had no signs of strep at all! Tonsils came out last week and the removed tonsils cultured positive for strep! 2 weeks of antibiotics and the head tics, vocal tic and hyperness are no longer there....what does this mean? Will they come back now that the antibiotics have ended yesterday or was it the strep in the tonsils causing this? If they come back, how will I get more antibiotics without a positive infection or any severe behavior symptoms? Is this PANDAS and what next?

EAmom and Vicki...we are in the exact situation. 1) sibblings are carriers 2) symptoms come back as soon as we lower Augmentin I am nervous that the White Paper will prevent us from getting antibiotics. I do not want to wait until he is "bad off" enough to pursue IVIG, he has been doing well on Augmentin. Also, Dr. K sounds like a wonderful person, however, who really knows how all of our children are responding to different treatment!!!! Has anyone ever contacted the families of the diagnosed children and got any consensus on how our children are responding to the different treatments? Maybe so many of us have had fairly good recovery with the antibiotics that we have not needed to contact Dr. K. As for us we knew that IVIG was the direction he believed in, so we went with a Dr. with the long term antibiotics route to try first and have not needed (knock on wood) to pursue IVIG. Also, as far as being asymptomatic....all 3 of our boys are asymptomatic to strep and we just got the 2 non PANDAS boys titers run. One has almost 500 and the other almost 800! The youngest has been swabbed and (rapid & 72 hour) ALWAYS negative. Last week the tonsils and adenoids came out and were cultured...positive for strep. Given 14 days of Augmentin and the head and vocal tic as well as the hyper behavior...gone! Never a single sign of strep. I am curious what all of their Cunningham’s tests will say. Had no idea that the youngest son’s tics could be a sign of this illness until Dr. L asked. I mean he never had strep…I thought…the positive culture on the removed tonsils is the only place that a positive strep was ever detected. So, thank goodness we kept (and still keep)the PANDAS son on antibiotics. I also wonder about the family that can not afford IVIG, does that leave that child with no opptions? OH, still so much to learn...but let's keep moving forward!

EAmom and Vicki...we are in the exact situation. 1) sibblings are carriers 2) symptoms come back as soon as we lower Augmentin I am nervous that the White Paper will prevent us from getting antibiotics. I do not want to wait until he is "bad off" enough to pursue IVIG, he has been doing well on Augmentin. Also, Dr. K sounds like a wonderful person, however, who really knows how all of our children are responding to different treatment!!!! Has anyone ever contacted the families of the diagnosed children and got any consensus on how our children are responding to the different treatments? Maybe so many of us have had fairly good recovery with the antibiotics that we have not needed to contact Dr. K. As for us we knew that IVIG was the direction he believed in, so we went with a Dr. with the long term antibiotics route to try first and have not needed (knock on wood) to pursue IVIG. Also, as far as being asymptomatic....all 3 of our boys are asymptomatic to strep and we just got the 2 non PANDAS boys titers run. One has almost 500 and the other almost 800! The youngest has been swabbed and (rapid & 72 hour) ALWAYS negative. Last week the tonsils and adenoids came out and were cultured...positive for strep. Given 14 days of Augmentin and the head and vocal tic as well as the hyper behavior...gone! Never a single sign of strep. I am curious what all of their Cunninghams tests will say. Had no idea that the youngest sons tics could be a sign of this illness until Dr. L asked. I mean he never had strep….I thought….the positive culture on the removed tonsils is the only place that a positive strep was ever detected. So, thank goodness we kept (and still is)the PANDAS son on antibiotics.

How is N doing now? Praying for you.... Call me! Linda

My boys are going to include their own personal letters as well.

Still hoping for more good news!

Thank you all! You all had some good advice, of course! (Yes, DS10 has been on Augmentin XR 1000 twice a day for 8 months and is finishing a 30 day steroid round) 1. I absolutely need to find the joy in the moment while things are calm. 2. We are working on a plan to have the right doctors in place (just in case) 3. Home strep tests will be ordered. 4. Began reading about OLE 5. Making an appointment for myself 6. Will ask for the titers run again (maybe at the very end of the year) (Here is a thought I have been having….could titers be high due to an autoimmune response that is NOT PANDAS but something else? One son did get HSP – autoimmune illness from strep. The other son, that got head tics, complained about his heart hurting for about 2 months. We were in the middle of crisis for the other 2 boys that we “blew it off” as trying to get some sympathetic attention, heart burn, drama, or ? ….remember, at that time we still had no idea that all of this was from strep, so it never even crossed our minds until the titers came back high, now I wonder if we should check for R. Fever?) Thank you again...it is great that you all are here to listen; but still, everyday life can be hard because no one around you really "gets it" and then there comes a point that you just stop discussing. It is difficult to be a good friend and neighbor sometimes when others discuss their "problems" and you just want to roll your eyes. (Parents trying to decide between football or baseball, ballet or tap, making a "B" in math instead of an "A"....really? seriously? these are your "BIG" parenting dilemmas? See...I have become cynical and impatient with petty things. It probably doesn't help that I teach children with autism and see how hard these loving families have to work at life with these amazing children and yet face the judgment of others. We are in a relatively “good” place right now and I need to remind myself of that and Thank God everyday for the blessings he has given to us because there are so MANY. This Thanksgiving…I am THANKFUL for all of you…you all have guided me through this year and that is why we are in a “good” place! Without all of your wisdom…well I don’t want to think about that because last year at this time “they” were mentioning “hospital” setting and we said “no” and pushed for answers…there you were…thanks! Linda

WOW! I really needed to read this today. I am always stunned when I read how long this illness has been discussed or mentioned (decades), but then nothing done about it! This makes me feel as though the research will keep moving forward! I am going to send them a Christmas card with a donation inside. YEA!

Well I am not sure where to start. When I found this forum almost exactly one year ago, I read some of the posts and told myself that we would be the exception. A few antibiotics and that would be that. Well, here we are, still obsessively reading everything I can...just in case someone found "the magic" answer! Our ds10 is doing O.K. right now...(knock on wood.) After wasting too much time trying to get answers, we flew to see Dr. L. last month. She asked about our other 2 sons (8yrs & 9yrs). She confirmed what many of you have been writing about (high sibling rate) but once again I have read your posts and said...."that won't be us". She said to get the other boys' tonsils out and do titers on us all and the Cunningham's test for the boys. I posted last week that the boys’ aso and anti D Nase results were very high! In the 500s and in the 700s! Cunninghams tests not back yet and tonsils & adenoids surgery done 5 days ago! I am angry, sad, nervous, full of anxiety, scared, confused and just a wreck. I feel like a failure as a mom. I should be doing something...when our ds10 got PANDAS I began to be a strep freak!!! I just did our medical expenses for 2010 and we are $26,000. out of pocket and have not even done an IVIG (yet-if needed). I have run the boys to the doctor for a strep test too many times to count (even when they are not sick but someone in their class is!) When they come back negative I insist on a 72 hour test. Each time for a year now they have tested negative.... Here is my BIG question: how can you have such high strep antibodies if you have absolutely no sign of illness or positive strep tests?!!! I can't tell you how many times I have asked the doctor "how can I protect these brothers from this illness if you don't know if they have strep!" He told me that strep would present itself somewhere.....really...where?...When my co-workers come to my classroom again and tell me that they have found yet another son walking in circles in the hall talking to himself??!! The boys have been on Augmentin 600 for 5 days so far. Interestingly enough, the son with the head tics doesn't seem to be having them these past few days. (I have posted that this time last year when they were all sick but negative for strep, the 8 year old began head tics, the 9 year old got HSP and the 10 year old...well, we "lost" him.) What should I do? The antibiotics (for post T & A surgery) will last for 9 more days. With aso and anti dnase numbers so high...I worry that we are just a strep exposure away from full blown PANDAS in those 2. I have held it together for a year now, but don't feel strong enough to watch this take another son. I have said this before, but, now what? Dr. L. has not returned my emails. Our pediatrician has been helpful for the ds10 with PANDAS because he saw him become dysfunctional overnight. But, I'm sure he will not give long term antibiotics to the brothers that are not very (slight head tics in 1 son) symptomatic and is this what I should be pushing for? I can't stand this! Not to mention that the 1 year anniversary of this @#$% nightmare is upon us and I am crying at every little reminder. (Dec. 11th is when grandma called us at a company Christmas party to say that ds10 had a terrible headache....Christmas party this year? Yes...Dec.11th!) I think I was having a panic attack at my team leader meeting at school the other day as we went through the upcoming school event dates. I think I need some type of medicine....I too feel that I have PTSD. I am not sure of the reason for this post, except for advice on what to do to be proactive for the other 2 sons. Don't think that my waiting, watching, asking them questions is good enough! I am harassing the boys with "why did you do that? "What are you thinking about? “What did you mean by that" questions and driving the whole family batty. I think I should get off of here and call a doctor for myself right now....THANK YOU FOR LISTENING and sorry for the rambling! Prayers to us all, Linda

Did she happen to get any resent vaccinations or the flue shot? Keep pushing on for answers....the above posts are very good suggestions! These parents here (and young adults) are very smart and helpful. Welcome and prayers at the same time. Linda

Got the PM. Busy caring for the boys after surgery. I will call you, thanks'. Linda

Leaving the surgery center . Convinced the ENT to put antibiotics into the IV bags. He also agreen to 2 weeks of antibiotics instead of just 10 days. That buys us a few more days. Dr. Cunningham's test results will be back soon and then we will make more decisions from that point! . Thanks for the prayers, Linda

Well we are off to get the T & A surgery for the 2 non PANDAS (as far as we know). Colleenrn, Yes our PANDAS son has been on Augmentin XR 1000 twice a day for 8 months. His titers are high but they used to be 1726 and 1920! We went last month to see Dr. L and she said that he needed to add a steroid bust and that he had PANDAS for sure (Already being treated by a "willing to try" pediatrician-as long as we sought out a specialist) and she said that he had sydenhyms corea (spelling?) The brother's are getting their T & A surgery because she asked how we made the connection to strep if our PANDAS son was never positive or sick with strep...we told her that the brother got HSP (autiomune illness from strep) at the very same time, he too was asymtomatic. We then told her about the brother that got head tics at the same time...She said that there is a high sibbling rate and that we should eraticate strep as much as we can and to get their T & A out. ENT said that they were big and needed out anyway. Mati"s mom and fixit, the non PANDAS boys are not on antibiotics right now, but our ENT will do 10 days of antibiotics post surgery. Given the new information that we just got about the high titers....today after surgery I am going to see if I can convince him to give it longer and then try to get a hold of Dr. L (try again!) Thinking about Dr. B...anyone use him? Sorry about all of the bad spelling....no sleep, and very nervous right now! Love to all of you and our beautiful children...please add us to your prayers today!

Wow! I feel like I just read about my own 10 year old son here in Texas. Their stories are too similar! We have begun a support group here in the Woodlands area. PM me if you are interested. Our son only got worse on prozac and went into Sydenhyn's Corea (Spelling?) He only improved after getting on Augmentin XR 1000 twice a day. I have a great pediatrician, but he IS NOT a PANDAS doctor. (only willing to work with us because he has become a believer since knowing our boys since birth and seeing the changes overnight) Also, He seems willing to do what he can because we are in the care of a PANDAS doctor in Maryland (Dr. L)and he seems more comfortable taking a back seat, but doing whatever he can. We too had all of the pains and the scary hallucinations. When we began the Augmentine XR 1000, the face and body tics stopped within 3 days. It has been 8 months since we becan antibiotics and we still are not completely well, but compared to last year...WE WILL TAKE THIS. Can you believe that we are so close to one of the world's leading medical centers and there is NO help available for us?! Some doctor could come to Houston and make a killing! PM me and I can getr you our support group info. Prayers to you and your family, Linda (3boysmom)

Don't forget to give him probiotics.

We have finally received today our family Titer Test results: - dad: ASO:66 Anti D-Nase:70 - mom (me): ASO:201 Anti D-Nase:109 - PANDAS son10yr: ASO:960 Anti D-Nase:1360 - brother 9yr: ASO:626 Anti D-Nase:756 - brother 8yr: ASO:236 Anti D-Nase:448 We are greatly concerned about both brother's numbers being well above the max normal. brother 9yrs was treated for HSP in January, but has not tested positive for strep since and brother 8yrs has not been treated for strep in years. PANDAS son 10 yrs numbers decreased some on the ASO but no change for the Anti D-Nase. Both brothers are scheduled for Tonsil & Adenoid surgery this Wednesday (Nov. 17). (PANDAS son had T & A removed 3 years ago) We asked the ENT about biopsying the tonsils but he didn’t understand the purpose and doesn’t plan to do so. Should we push for this? What are we asking him to test for? It is the day after tomorrow and I'm feeling like I should be pushing for some testing or byopsing or something before we leave from surgery and wish that I pushed for more. We have had the Cunningham tests run for all 3 boys, but the results are not back yet. What are your thoughts or concerns from the above results and what should we do about it? Brother 9yrs doesn’t appear to have any issues at this time; however, brother 8yrs has head & vocal tics, and a few other issues. Do you just wait until they are in crisis to treat? If their numbers are in the 700s does that mean it is enevitable that some type of autoimune illness is in the works? What would you do next? I do not want this illness to claim yet another one of our sweet boys! Feeling overwhelmed...thanks, 3boysmom

I got your email Kerri, see you Thursday...and Thanks!

I will see you there. Also, pizza will be served.

We live in Texas. Thank you!