saidie10

DH and I will see you there Cindy

LOL on the potty stops! Children are so honest. Have you done the IGg testing before? Is this a revisit of those? I was thinking about testing my younger son's levels again.

LLM - you said "You need to look at the other anti-neuronals and clinical picture." You are so right and that is my biggest hang up! I feel as though his clinical picture when he has had or been exposed to strep is obviously PANDAS, but I get so hung up on the Cam Kinase and the other anti-neuronal test results. On one hand you have this high Cam Kinase which Dr. MC wrote on his test results...within upper PANDAS range, and then you have the other page with the anti-neuronals and she wrote "normal". With my older son, even she said classic PANDAS case and if you look at the results she sent us, his anti-neuronal page says "extremely elevated...you almost always NEVER see these types of numbers in children that are normal". So I do appreciate your advice...it is great advice. I don't want to jump to treatment for anything until we know for sure, I just don't know sometimes with PANDAS that aren't clear cut, how you can know for sure? thenmama, dcmom and Christianmom - thank you all for your thoughtful insight and advice. I know a mother's instinct is important too as it was VERY important for the year and half we fought (well I personally as DH was in a fog at the time) for our older son to get the treatment and help we knew was right for him. My younger son had all the initial bloodwork done when my older son did and that is when we saw his titers were normal and his brothers were elevated. They did test for Mycho P and both were normal. Do you guys think it would be crazy to do the Cunningham Test again? See what's happening now? We have thought about Lyme testing but I just can not get anybody on board for that...it seems really far fetched for our little one (I know you never know but just how we feel). Again, thank you all so much for the insight! I knew when I woke up this morning I would have some great and thoughtful responses from other Mother's struggling with similar issues!

Hello all! It has been a while since I have been on the boards. I find myself creeping back in though as we again deal with the prospect that our younger son (6) might have PANDAS too like our older son (8). For an update and to help you understand where my question is coming from, both boys took the Cunningham Test in the Summer of 2010 because both boys had symptoms of PANDAS to some degree. Older son scored 164 and younger son scored 179. Older son had clear and sudden onset of symptoms with tics and anxiety, anger, frustration, separation anxiety, and tantrums beginning in the Summer of 2008 and OCD appearing very abruptly in the Summer of 2009. We saw a clear change in handwriting and math skills as well. Older son also had elevated anti-neuronal antibodies and elevated titers (ASO and AntiDNase while younger sons were within normal ranges. Older son had an Immune Deficiency in Subclass 2 while younger son, although very close to abnormal, had levels within the normal range. Our older son simply changed during the Summer of 2008 and we can almost certainly track it back to a case of impetigo. While we waited for doctors to listen to us, our son suffered with 7 strep infections over an 11 month period. He suffered so very much and I was so thankful to find a Dr. willing to do the right tests and get us the dx we knew we were dealing with. As for our younger son, he has always been the "difficult" child, the moody one who would throw tantrums. This makes it very difficult to say these are PANDAS symptoms. That being said, our younger son also quite obviously would react when infected with strep with PANDAS symptoms. We have seen the huge pupils, separation anxiety, bed wetting incidents, OCD and tics. These improve with abx. We removed his tonsils in January of 2011 to prevent him from suffering and to keep him from bringing strep home to the house to effect his brother which it had so many times. Two weeks ago though, our younger son started having increased anger, frustration, anxiety, tics, OCD and even a bed-wetting episode. Turns out his cousin whom he spent all weekend with last weekend tested positive for strep. I contacted our older sons doctor right away and he agreed to run bloodwork on our younger son a few days ago. His ASO was 193 with <200 being normal and his AntiDNase B was below 60. His last titer levels were both under 100 about 7 months ago so it has rising. Should we test again in 6-8 weeks? MY GUT is telling me this child has PANDAS just like his brother. He scored 179 on the Cam Kinase, he would have obvious PANDAS symptoms when he had strep infections, with improvement of symptoms during and after abx treatments, yet I really don't know if I will get treatment for him unless his titer levels are elevated! I thought some kids would not have elevated titers and that shouldn't exclude them from a PANDAS dx? Our older son's doctor did agree to try our younger son on 10 days of penicillin but I just don't think that is going to do it!!! Everyone was ready to do something for our older son last Summer because he had the clear cut onset and all the abnormal levels, but my younger son is suffering too I just know he is! Would you guys say with a Cam K of 179 and what I have described to you that he has it too? What would you do if you were me? Any and all advice is GREATLY appreciated!!!! As an update on our older son, the good news is that right now he is doing well! Since August of last Summer, he has had one high dose IVIG and 3 lower booster type doses. He has been on daily penicillin, probiotics and DHA since then. The IVIG's were truly miracles and we thank god we finally found a doctor willing to help our child! If we would have continued down that road I can not even imagine the state our poor boy would be in right now. It truly is a nightmare when I think about what would've happened if we had not pushed and fought for him, knowing in our gut he had this new and controversial Disorder. Now he is by no means cured but he is slowly healing and we hope he continues to recover. We know there will always be chances for him to slip back, but we are hopeful and we will do our best to help keep him healthy! He is completely off the SSRI that the Pedi Neurologist put him on in 2009 when she told us he likely had Tourrette's and OCD. Boy it felt great to send her the letter that she was wrong and she better stop doing such a disservice to children whom come in presenting with these symptoms! She told us that he couldn't have PANDAS...it was too rare...blah blah blah! If only she had done a simple freakin bloodtest she would have seen his extremely elevated ASO and AntiDNase B titers and we would not have had to wait another year before someone finally listened to us! Okay, now that I have got all this out there...hit me with your best opinions!!!!! Thank you all so very much!

Hi! My story is so very similar to yours in terms of my life on this wonderful Forum. When we were knee deep in the throws of trying to figure out what was wrong with our son we were an addict, once we finally did get a dx we were an addict, and then when we were trying to figure out what to do about it I was still utterly and completely addicted to this site! Then honestly, I needed a break. Between the doctor visits, my online research, and my endless need to read every new post on this forum and offer advice where I could, I honestly had become a complete and absolute basket case! Ultimately we did find a doctor to treat our son and that was what all the hard work had been for. Well here I am though, back again, lurking the pages for information and feeling the need to begin researching again. Researching to make sure we are doing the right things for our oldest son and again visiting the possibility that our youngest son also has PANDAS. I too am fortunate enough to be attending the symposium. My DH is going too which I am really about as this is still very difficult for him to understand and put his mind around. I had the great honor earlier this year to talk briefly on the phone and in person with Dr. Cunningham when she came to San Antonio to speak at the UT Health Science Center to a group of doctors and students including my son's Immunologist. I am looking forward to hearing her speak again, hearing Dr. Swedo, and Dr. Murphy out of Florida. I plan to take a bunch of notes and if possible shoot out a question (your questions are awesome by the way!). I would love to meet up. I will PM you my phone number and if you get a chance and want to take the opportunity to meet up, please feel free to call me! Thanks, Cindy

Hi! DH and I are attending Friday in Round Rock. Are you attending?

Hi! DH and I are only attending the Friday conference in Round Rock. We are driving up from San Marcos early that morning. Would you be around to visit after the conference on Friday afternoon? I was hoping a group of us could get together after things wrap up that day. What are you doing Thursday night? I would be willing to drive up to meet for dinner if you and/or any others are interested! Would definitely love to meet some others dealing with the same issues.

Great to see a few others going! We are driving in from San Marcos early Friday morning. We would love to get together after the conference that afternoon with anyone interested!

Hi! Boy it has been a while and a lot has happened. I don't have time to go into things now, but I wanted to make sure everyone knew about the Symposium in October! Dr. Swedo is one of the keynote speakers. I registered my husband and I today and we are going to the second day on October 14th. I have attached a link! This has likely been posted on here before but I wanted to make sure I shared it just in case! http://pandasnetwork.org/2011/08/good-news-on-upcoming-texas-symposium-update/ Cindy

Everyone is still learning for sure and I am so glad we found a doc who is willing to ask for help and seek advice and opinions of others!

Hi! Your daughters cam was similar to my sons his was 164. I spoke with dr. c and she said that any titer that is double the mean is considered high so it looks like her lysoganglioside is double and d1 is very high. My sons d2 was 16000. Dr c said they see elevated dopamines in kids with predominant tics as is my son. good luck and I look forward to hearing her take on the numbers.

Hi! Your daughters cam was similar to my sons his was 164. I spoke with dr. c and she said that any titer that is double the mean is considered high so it looks like her lysoganglioside is double and d1 is very high. My sons d2 was 16000. Dr c said they see elevated dopamines in kids with predominant tics as is my son. good luck and I look forward to hearing her take on the numbers.

Been a while since I have posted. Life is crazy with two young boys (one with PANDAS, one who might have it) and having a retail business during the holiday season makes for a busy, tired and stressed out Mommy. Sitting at Christus Santa Rosa in San Antonio today while Cooper receives his IVIG. After first two day IVIG in August he slid back for two weeks then had 4-6 really amazing weeks then we had in home exposure to strep from little brother and tics and behaviors reappeared. We are trying a one day IVIG and will spread them out 4-6 weeks apart and just see how things go. I am hoping this will help keep his immune system strong until we get his brothers tonsils out in January. Keeping it out of the house will have to help! Dr. Cunningham is coming to the hospital to work with my sons doctor and his staff in February with regards to PANDAS so I am excited to try and come over and meet her! Feeling blessed today to have a great doctor and his staff is so wonderful. Truly forward outside of the box thinkers which is what we all want, right? Blue Cross Blue Shield of Texas approved 6 months of monthly IVIG if needed. Feeling very thankful for that although 20% out of pocket will still hurt and the deductible starts over in January. Oh well, I will go broke I guess trying to help him and that's just the way it goes! Blessings to all and hope the holidays bring lots of good news, good health and speedy healing... Cindy

Dr. Infante for us too (we live in San Marcos). August 2 day IVIG and we are actually here today for his second! The staff is wonderful and we are very hopeful!

Grace! So glad you guys are going to get IVIG! I have been MIA for a while but it was nice to pop in here and see you are moving forward with it. Sorry you are dealing with the financial issues. It is always so hard. We are out 20% to each time and are looking at monthly now possibly...yikes!

Such a crazy disorder! So DS7's tics were flaring up over the last 1.5 weeks and we were wondering why. No one in his class had it and others had since school started and no reaction. Well low and behold his brother 5 started running fever on Sunday and we took him in first thing Monday to get him tested and he is positive for strep. Last night DS7 felt the need to wipe over and over before bed and this morning informed me that he likes things to be even and asked me if I knew he thought about that all the time and wondered if I liked things to be even too when I was little. So hear we go again! I am hoping to get into his Immunolgist soon to see what might be next. So sad

BCBS of Texas did cover our sons IVIG in August. The hospital caseworker assigned to getting the benefit information really fought hard for us. The letter from the doctor did say dx PANDAS and discussed it as being an Autoimmune Disorder, all of the labwork was sent and data about IVIG and PANDAS. We really did not think they would cover it! They also sent the IVIG bulletin from United Healthcare too. Well good luck! I know this is so hard!!!!

WOW, your story sounds just like mine. We need to talk! I can tell you from my conversation with Dr. Cunningham that the youngest ds5 who we do not have a dx on yet (oldest son 7 was dx in July) is basically like a ticcing time bomb...you are right. Time will tell. We should talk on the phone...to much to talk about in PM's. I am going to PM you my number. Call me anytime. Maybe we can help each other out!

Thank you so much for the responses. I do plan to update the doctor and see what he has to say. Express my concerns, but also not jump the gun...I guess I shouldn't be too quick to change things. Maybe I do need to be more patient. He is very much following Swedo though so I guess he will need to become versed on the tic situation when it comes to PANDAS.

Thanks...I needed this. Just breathe. I am glad this post allowed some others to find some answers and ask some questions that they were looking for or having!!!!

Ok experts. I have decided to go ahead and contact my son's Immunologist. Remember this is his first PANDAS case so I know I should involve him, and I trust him and I know he wants to be involved in the whole process, I just don't know if he is going to know what to do next? Hopefully he is willing to contact the appropriate doctors to help him. I spoke with the patient care coordinator in his department and she wants me to put together an email with a synopsis of how things have been going and what we have seen over the last 8 wks post IVIG. I have spoken and communicated via email with him briefly but that was during the initial ramp up of symptoms which we had expected might happen, and then things got really good, but now we are here with motor tics again and I just don't know what to do. What questions should I ask him? Should we talk about changing abx (DS7 is currently on Penicillin 250mg per day). What about another IVIG? He strictly following what Dr. Swedo and Dr. Cunningham have put out in regards to treatments etc., so what do you think he will recommend? What about additional testing (titers, lyme, etc - mycoplasma was negative btw). Steriod burst? Thanks so much guys...I could never do this without all the help you all have given me!

Thank you again guys so much. All the support here is so amazing. We tested for Myco and it was negative so do I assume this is 100% accurate? Guess we should look into Lyme too. Could it still be Lyme though in my older son if my younger son is presenting with possible PANDAS too? I guess I wonder how they both could have Lyme if it is not just PANDAS or Lyme instead of PANDAS. So freakin confused and just trying to logically think all the decisions we make through!? Maybe we are over thinking and just need to be patient with IVIG response? UUUGGGHHH!!! Maybe I should contact my son's doctor and see if he would be willing to look into why my son may be presenting with tics again (as a reminder, my son's Immunologist is using my son as their initial PANDAS case and he is working with Dr. Cunningham). I have been hesitant to call him because I know he will need help to figure out what may be happening or what we may need to do next and I amost just want to schedule with Dr. B or Dr. L or someone else. It is not that I don't completely trust this doctor. Maybe he would want to do some bloodwork right now since my son is having symptoms? I guess he should be the first step though, right? I feel like my poor son right now with my mind racing 100 miles a minute trying to figure this thing out!

Thanks so much for the responses and the advice about Lyme testing. I am still trying to understand how it could be Lyme though if it seems so obvious that DS's neurological exacerbation's are a result of strep exposure or infection?

Hi and welcome. Sorry you and your family are suffering with this debilitating illness. Every day can be a struggle and although I have not walked in your shoes, I wear the same brand and quite honestly they hurt my feet too! I will offer one form of advice that has actually worked for us during a rage. My husband grabs the hammer and my sons safety eye glasses and they hit the backyard quickly where he bangs the heck out of rocks! Yes, it has worked for us. They go outside, separate from what is causing the anxiety, separate from me and his younger brother and he bangs and yells and bangs. We tell him that the PANDAS is making him angry and he needs to get the anger out so he can feel better. This may not work for everyone (we live in an area where he can do this in our backyard) but there may be other options for your family...a punching bag, think of something that distracts him. We have had to alter things over time. There was a period of time when rubbing a special rock calmed him down. We would tell him to grab his rock and find a quiet spot and rub out the anger and frustration. I also understand your concerns about protecting the younger sibling. It is hard. We are very likely dealing with PANDAS in the younger one too and he has always been a difficult child so putting the two of them together is tough sometimes. They've both been in the yard banging away at the rocks many times! Motrin is our friend too. If I could tell it was going to be a difficult day right off in the morning, they get a dose. As for the behavior at school versus at home, this has always been an issue for us too once the PANDAS started. The teacher would never see the rages (they would see increase in ease of distraction, inability to focus, increased impulse control problems, etc) but the rage, no. This symptom was luckily saved for us so DH and I would get into the discussion of this is just him not getting his way. It was not until we were absolutely positive that strep was causing the problem that we realized that he likely fights the rages all day, along with the tics, and then just lets it all out when he gets home. It is like a volcano building up the pressure all day until it finally erupts WHERE HE FEELS SAFE TO LET IT ERUPT. I think that is the key. He feels safest with us so we unfortunately get to see the worst part of PANDAS. Hang in there. Fight the good fight...you are a wonderful parent, don't doubt that! I understand you have other issues you are dealing with too which I have no experience with. My dear childhood friend has a son with Aspergers. They do have someone providing some excellent therapy for them, specifically for him and his younger sister to help with their interaction. Maybe look into someone in your area who may specialize in this?