3boysmom

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P Mom - I am totally with you... my son does fairly well between exacerbations... he is happy and functional. I understand that IVIG will not remove exacerabations... so I am having trouble justifying it in our case. I need to talk to the doc more about this. It seems IVIG is really helpful for families who cannot get their kids into remission otherwise... but if you are able to go into remission and be functional without IVIG... is there a point to the treatment? Will IVIG reduce the number of exacerbations he has? That would be a reason to try it... I am still somewhat on the fence in our case. We are so, so, very much in the same boat! It is absolutely not the money! In fact we have saved up for the IVIG for "just-in-case." For me it is about the fact that our ds10 is 95% better. It is so nice to hear him laugh again! How can I put him through this h..l all over again and for what reason? What am I hoping to get? But then if he can be 100%, I feel that I am being neglectful by not doing the IVIG. If IVIG's measurement of success is 75% of baseline, (I think I don't have that number exact) aren't we already there with the antibiotics? What if it turns back pages and we only get back to 85%? I will feel horrible that we didn't leave good enough alone and be grateful for the improvements that we did make. The thing that really holds me back is when I read that many are on their 3rd, 4th, or 6th IVIG. Then how is that considered working if it needs to be constant? So I go for the IVIG treatment in hopes of getting my child back when I already do have him mostly back? I know that he could relapse at any moment, but it sounds like that happens with IVIG also. It does seem that many of us are dealing with 10 year old boys and we are worried that we are reaching that "10 year" mark. That is why I was so interested in the comment about antibiotics on Dr. K's site. We had sudden overnight PANDAS and got on antibiotics after 3 months, but in all reality I can name 2 very small but odd times in the past after an illness and to be honest...after his 15month old shots....he was a bit in a fog ever since. Maybe he had asymptomatic strep during his shots and I didn't know. Oh, here is a question I have wanted to ask: We get his blood ASO and Anti dnase tested every 2 months. Although they are going down, it is very slow. Began in January with ASO 1726 and Anti Dnase 1920. Every 2 months they seem to go down by only 200. Now after 6 months his ASO is 1292 and Anti Dnase is 1360. At the rate they are going down, we could be doing this for years and that does not account for re-exposure! When you do IVIG, does that set everything back to normal limits? Anti ASO 200 and ANti dnase 170? I saw someone else post that there son will be attending a small private school for 5th grade with a ratio of 1 to 6! That is odd because our son will also attend 5th grade at a private school with only 6 to 8 other kids in his class. Thought about homeschooling but although my love and passion is teaching kids with needs, it is now what pays for my child that now has needs of his own. Ironic.

Thank You!!!!! We are in the same boat and also with very mild Asperger's.

Here is Dr. K's website link. I copied his “patient phenotype” paragraph for you. He has a section on there that discusses Autism. http://www.webpediatrics.com/pandas.html QUOTE: (2) Particular patient phenotype. PANDAS patient is frequently highly intelligent, very communicative child who is also a very good student. It is common that patient's past medical history contains information about occasional ("transient") tic(s), certain degree of obsession with order, cleanness, preciseness, etc. In addition, infantile problems with colic, poor sleeping habits are frequently reported in PANDAS patients. Dr. K's information is great. Not everyone with PANDAS is on the Autism spectrum (seems that most are not). Having said that, there seems to be too many that also have autism to dismiss a connection. Many seem to be very highly intelligent (with Asperger's). Which is actually the case with our son. Very bright but rambles on too much and about topics that are way over the heads of most 10 year olds. For the most part he fits in and most would not know...not in any special classes, but PANDAS has rocked his world and now he struggles.

I worry about the same thing! We are using the Augmentin XR treatment, but feel that from hearing all the others' experience with this that it will not be "if" but "when" he relapses and has another episode...we will be off to Chicago. We also have strange autoimune illnesses on both sides of the family! Prayers to us all with the scary choices we all need to make and faith that God is guiding our decisions. BTW-His school is in Texas.

When my ds10 was at his sickest, I noticed that he kept checking the same book out from the school library. The librarian came by my class and said that he would not check out anything else (he used to be an avid reader, reading many books a week). I told her that I would speak to him about it and when I asked to see the book, it was, "Chicken Soup for the Young Person (or Kids) Soul". He told me that when the intrusive thoughts were too much to handle, he would read a particular poem from the book. He said that he would read it over and over and it kept him going. I copied the poem for him and he carried it in his pocket. OVERCOMING OBSTACLES Don't be a coward, fearful and weak, Be the last one to quit, and the first one to speak. Don't hide your face from the light of day, Be courageous in life and stay that way. No need to run from your trials, troubles and problems, Have confidence in your step as you reflect how to sove them. Yet, if you happen to fall, don't lie there and die, Get up without a thought, and hold your head up high. Be wise, courageous, bold and brave, And life will be worth living, from your birth to your grave. -Jereme Durkin One morning he woke up out of a fog and said, "I'm baaaaack and ready to write a Chicken soup for the PANDAS soul". So books, stories, poems, words, can be very helpful.

When my ds10 was at his sickest, I noticed that he kept checking the same book out from the school library. The librarian came by my class and said that he would not check out anything else (he used to be an avid reader, reading many books a week). I told her that I would speak to him about it and when I asked to see the book, it was, "Chicken Soup for the Young Person (or Kids) Soul". He told me that when the intrusive thoughts were too much to handle, he would read a particular poem from the book. He said that he would read it over and over and it kept him going. I copied the poem for him and he carried it in his pocket. OVERCOMING OBSTACLES Don't be a coward, fearful and weak, Be the last one to quit, and the first one to speak. Don't hide your face from the light of day, Be courageous in life and stay that way. No need to run from your trials, troubles and problems, Have confidence in your step as you reflect how to sove them. Yet, if you happen to fall, don't lie there and die, Get up without a thought, and hold your head up high. Be wise, courageous, bold and brave, And life will be worth living, from your birth to your grave. -Jereme Durkin One morning he woke up out of a fog and said, "I'm baaaaack and ready to write a Chicken soup for the PANDAS soul". So books, stories, poems, words, can be very helpful.

Hello Bright One, Loved the letter...Maybe I would leave off: "is an Autism Spectrum Disorder" from your first sentence of your second paragraph. (Pediatric Autoimmune Neurological/Neuropsychiatric Disorders Associated with Streptococcus is an Autism Spectrum Disorder.) Although many seem to find a link, it is not the case for many others. I teach children with Autism and as of yet PANDAS is not on the spectrum. Thank you for all you do to help move this forward!

AJ I am with you on this one. It is so difficult to make this decision. I am not looking for perfection, but I also want my son to reach his fullest potential. I wish I could know what he would look like with IVIG to help make that decision. I am sure there are some children for whom ABX is enough. I am not sure if that is my son. Please know that I ask this with the utmost respect and sincerity to those of you who are dealing with this dilemma. I know I can be fresh, but not in this instance. Is it the risk or money that gives you pause? Both are totally valid considerations. If (everybody cross your fingers right now) we get to a point where all insurance covers all treatment options for our children, how would that influence your thought process? Some people view IVIG as a substantial risk and others...some risk, but not that much. If you knew it would be paid for in totality, would that sway you toward giving it a try? For me, with my younger dd7 in mind (who I'm on the fence about re:dx) I would have to see interference in typical, daily functioning to consider it, even if it is no cost to the family. Looking at that silver lining, I would already know what to expect having gone through it with my older girl for whom I had no doubt in my decision. To be honest with you, in my case, it is not the personal out-of-pocket money that holds me back. My son has mild immune deficiencies and I think Dr. B would get it covered. If he needed it and it was not covered, I would still give it to him... so I can honestly say it is not the money in my case. I do have concerns, though, about using medical dollars unnecessarily. Let's face it - just because insurance covers something it is not free - it just means that we all share the cost. I really make a conscious effort not to waste insurance dollars (I know that probably sounds odd- just a part of me). I also have concerns about using a donated tissue product unnecessarily. I don't want to be using IVIG on my son if it is not helping when people donated that blood to help people who really needed it. Does my son really need it? Should we be saving that for some of your kids who are much worse off? Again - I know that is very odd but it is something that I think about. That being said... I honestly have slight concerns about the safety - though they are no more than the concerns I have whenever he has had a vaccination or when he has had surgery, so I don't think the safety is the issue for me either. I think the biggest concern for me is stirring up the pot and making things worse. I worry about turning back the pages and not having them turn forward again. I worry about putting him through an exacerbation without any long-term benefit. If I did IVIG I really don't know if he would be any different than he is now. He has had this for so long I don't know what "baseline" is for him... and -honestly- I can accept him as he is right now and work with it.... But I think about what SF MOm says about not settling for anything less than "normal" and I don't want to sell him short. He is 13 now so I feel like time is running out. Only 1 more year until High School. Right now I am reveling in the relative "normalcy" we are having after his sinus surgery. He wakes up happy every day - goes off to camp, and comes home tired and happy. He has friends, he has activities, and there are no tics or obvious OCD... but the night time is still iffy. He still has some trouble with sleeping or staying asleep... and I know we are only one germ away from another exacerbation. So... would IVIG decrease the number or severity of exacerbations? Would it raise the level of his baseline to something even more functional? Those are the questions I need the crystal ball for. We are so, so, very much in the same boat! It is absolutely not the money! In fact we have saved up for the IVIG for "just-in-case." For me it is about the fact that our ds10 is 95% better. It is so nice to hear him laugh again! How can I put him through this h..l all over again and for what reason? What am I hoping to get? But then if he can be 100%, I feel that I am being neglectful by not doing the IVIG. If IVIG's measurement of success is 75% of baseline, (I think I don't have that number exact) aren't we already there with the antibiotics? What if it turns back pages and we only get back to 85%? I will feel horrible that we didn't leave good enough alone and be grateful for the improvements that we did make. The thing that really holds me back is when I read that many are on their 3rd, 4th, or 6th IVIG. Then how is that considered working if it needs to be constant? So I go for the IVIG treatment in hopes of getting my child back when I already do have him mostly back? I know that he could relapse at any moment, but it sounds like that happens with IVIG also. It does seem that many of us are dealing with 10 year old boys and we are worried that we are reaching that "10 year" mark. That is why I was so interested in the comment about antibiotics on Dr. K's site. We had sudden overnight PANDAS and got on antibiotics after 3 months, but in all reality I can name 2 very small but odd times in the past after an illness and to be honest...after his 15month old shots....he was a bit in a fog ever since. Maybe he had asymptomatic strep during his shots and I didn't know. Oh, here is a question I have wanted to ask: We get his blood ASO and Anti dnase tested every 2 months. Although they are going down, it is very slow. Began in January with ASO 1726 and Anti Dnase 1920. Every 2 months they seem to go down by only 200. Now after 6 months his ASO is 1292 and Anti Dnase is 1360. At the rate they are going down, we could be doing this for years and that does not account for re-exposure! When you do IVIG, does that set everything back to normal limits? Anti ASO 200 and ANti dnase 170? I saw someone else post that there son will be attending a small private school for 5th grade with a ratio of 1 to 6! That is odd because our son will also attend 5th grade at a private school with only 6 to 8 other kids in his class. Thought about homeschooling but although my love and passion is teaching kids with needs, it is now what pays for my child that now has needs of his own. Ironic.

Think it is an idea to consider. I have our experience documented daily in great detail and our ds10 began to write/journal his experience. He titled chapter 1 "The Day the Nightmare Began!" Here are 2 other thoughts for raising money that I have been pondering for a few months. #1) Getting in touch with Howie Mandel: OK, now that you have stopped laughing...he writes about how he remembers the day that his OCD began and that he was bit by a sand flea at the beach....Anyway, left me wondering if he had ever heard of PITANDS or PANDAS. Seems like a unique "cause" that would be something he may be pationate about. (How on earth do you get in touch with famous people?) #2) I saw Warren Buffet's (Spelling?) sister on a talk show recently, she has this organization where people submit requests for money/donations and a group of her people review them all and decide whether or not to help. (I will look up the title of her book and name of the organization.) Maybe a few PANDAS stories to her fondation may get somewhere. I know both of those idea are "out there", but they keep popping into my head. I just hate thinking of the kids that can not afford to get help! Keeps me awake at night! Speaking of that, I should realy go to bed, it's past midnight. Goodnight

Great news!!! I teach children with Autism and I often wonder....... Hey, was the valium reduced for you or her? and do you share? Just sayin'

I did not go to the conference, but was only asking about what Dr. K meant on his website: Quote: "It has been our experience however, that eventually ALL patients will become antibiotic non-responders and other therapeutic option must be considered. Thus, long-term full-dose antibiotic treatment for PANDAS does not appear to be a viable option!" He has that last part in bold type.

Just thought I would add my thoughts on all of the latest buzz today. Our ds10 had very minor illness last year and then began to show up at my classroom with weird crying and confessions. Thought he may be taking his First Communion Catholic classes on confession a bit too serious. Was very strange and I teach special needs children! I contacted school support services and we were all a bit baffled at the strangeness. After about 6 weeks of keeping things low stress…it went away. Christmas 2009 he was sick with a small 2 day fever. (Never went to doctor) Woke up full blown, over night OCD! Washed hands until they bled, and then a few days later some teachers came running into my class saying that Hunter was walking in circles in the hall and repeating “right or left, right or left?” The teachers said that they helped him to join his class in the lunchroom and that he was unresponsive to them. I ran to the cafeteria to find him standing in front of his lunch table like a zombie lifting his right leg and then his left leg over and over. The 400 other 4th graders were watching, pointing, and his teacher’s mouth was wide open. I tried to get him to sit and eat but he did not want to touch his food. We kept him from school while waiting to get an appointment with a psychologist, neurologist, psychiatrist,….he then began to walk around the house with his face against the walls. The face tics began and then the uncontrollable full body movements. I have carefully documented everyday for 5 months. (kind of second nature as that is some of what I do for a living on a daily basis.) Neurologist mentioned PANDAS but did not believe. We did our own research and got on the right track with help from our pediatrician. I could go on and on with this story and list all the doctors that did not believe or refused to listen or tried to educate me and set me straight. I could list for days all the negatives with this very cruel illness. We are still not completely healed and will now attend a private school next year. (was a gifted straight A student) I share this to make a few points: #1) Although I did not find out about PANDAS through Beth M., I did see Sammy on TV and it looked all too familiar and helped me to feel confident that this is what our son had. Having said that, I am fairly sure that for most others this is NOT the case. If I would have seen Lauren on the show with her sneezing tic, I would not have made the connection for this being our illness. Point is….We all have different stories and they are all important. So I really don’t have an opinion one way or other about Beth personally (never met her). I am glad for ANYONE to get the spotlight and word out on this illness. #2) we did contact Dr. N (that helped Sammy) and she conferenced with our Pediatrician. Was the first of many, many, many doctors that I actually heard speak of PANDAS as if it were indeed real. She was kind, confident, and helpful. She cost $94.00 for a phone conference. From there our doctor spoke with another doctor and now there you have it….two boys being helped though high dose long term antibiotic treatment. #3) Dr. K says that “ALL” patients will become non responders; I have called to ask what he means….a phone conference is $500. So, do I just throw in the towel on the antibiotics that have helped him become 95% better and go for the IVIG treatment because he says it is the only option? Maybe he does not know about the kids that are getting well with antibiotics because they do not seek further help. (and who is tracking anyway!?) If antibiotics no longer work for our son, we will be on the next plane to Chicago to meet with this wonderful man and go for the IVIG. However, seems like many go for IVIG 3 and 4 times. (so do they become non responders to IVIG…don’t know how that works) #4) I personally like that there are a few different options being discussed for treatment. What if there were only one and your child did not respond or improve with this one treatment!!! Where is the hope in that? All of our children seem to have many different and similar things going on and respond to many different treatments. I just wish that Dr. K didn’t have the word “ALL” in the statement about antibiotics. Sounds so definite and absolute. What about Jamie (not only Sammy)? #5) How is anyone even knowing what our kids are all responding to? I’m so grateful and glad that the doctors are all communicating with each other, but who is communicating with us? We are a very bright group of parents (and a teenager!) with a lot to offer. It is odd that many, many of us are dealing with this in areas that do not have any PANDAS doctors, so we are not being tracked or kept up with. The doctors (interns) should join this forum and run surveys on us all. I elect BUSTER to be our liaison. My final thought is that as much negative as we get from doctors, schools, and all the others, there is no room for anything but support of each other in our small circle of understanding supporters. Vickie and Jag10 loved your posts!

Strep rash (scarlet fever) is caused by a skin reaction to strep exotoxins. I don't think there has to be an actual infection for the strep to produce the exotoxins. I don't have anything useful to say about #2 & #3. I had no idea that Dr.K says this. Who is Jamie? Here is the quote from Dr. K.'s website: "It has been our experience however, that eventually ALL patients will become antibiotic non-responders and other therapeutic option must be considered. Thus, long-term full-dose antibiotic treatment for PANDAS does not appear to be a viable option!" Here is the link to Jamies's story: http://jamiesstory.wordpress.com/ http://jamiesstory.wordpress.com/

Strep rash (scarlet fever) is caused by a skin reaction to strep exotoxins. I don't think there has to be an actual infection for the strep to produce the exotoxins. I don't have anything useful to say about #2 & #3. I had no idea that Dr.K says this. Who is Jamie?

What does phlegm stand for?

I tend to believe that it is the child that is bright. Maybe the genetic makeup of a bright persons brain more closely mimics the strep. You only need to read EmersonAilidh's posts for proof of giftedness! Are you sure you are a teenager?

Our ds10 had been on Augmentin XR 1000 twice a day for 3 and 1/2 months. Pediatrician is not experienced in PANDAS, but was willing to treat after phone conference with Dr. N. When son began to show improvements, our pediatrician wanted to lower the dose. Split pill in half and gave 1/2 in AM and 1/2 in PM. Two days later he got a "step like rash" (dr. said scarlentina-but could come from other things besides strep) All tested negative (including dog, for strep). I wonder if it is possible that his body reacted to his strep antibodies or is that sillly thinking? Each day we began to see a little "back-sliding" behavior, until he came to us crying that "IT" was coming back. We wanted to honor the doctor's directions to cut back the dose (because he is the only one willing to help us) but wondered if we cut the dose too early and by too much....his titers are still 1000 too high. Without asking the doctor, we added a 1/2 dose (half pill) inbetween the AM & PM doses. That was 5 days ago and we immediately began to see improvements again. So now he is on 1500 of Augmentin XR ...(500 3 times a day). Today he had to go to the pediatrician for an ear ache and I told the doctor what we did. He said that he is fine with that and trusts that we are helping him to make the best decisions for our child, and that he is kind of allowing us to lead him. That is the best we all can do here without a specialist in pandas anywhere around this area. He will begin the ear drops whenever the pharmacy is done filling the px. Can't remember the name of the drops for swimmers ear, but wonder if there is any problem with PANDAS and ear drop meds...probably being overly worried! Things to ponder...#1 can a strep rash come from a reaction to strep antibodies and not strep infection? #2 Even though it is not ideal to cut a time released pill in half (phama. manufac. doctors were called- and they said that the time released it not perfectly spead out but dispersed fairly even) Anyone else ever add a dose inbetween AM & PM doses? #3 Anyone have any problems with ear drops? and #4 Why dose Dr. K say that ALL patients become non responders to Antibiotic treatment? What does he mean? What does that look like? What happens? How would you know? What about Sammy and Jamie? Just asking.......Prayers to all!

Oh my goodness...that is beautiful! Made me tear up...so true!

Very true and well put!!!

Just thinking the same thing...as a take a sip!

What did you say his age was? Are you giving him probiotics?

Just want to let you know that throughout this fight for my child, I have considered this a fight for all of the kids dealing with this illness. I can tell by how all of these parents are actively willing to go above and beyond to help each other find answers that they also believe this to be a fight that is not only for their children but that we consider all of these children including you as "our" children! That is why so many continue to post on here even though their child is doing quite well. That is why we are all fighting for the research grant. That is also why some of us have volunteered to give blood and include our families in studies in which we will never get the results of. You are loved by all of us and you are one of "ours", so as for me...when I am searching and trying to find answers, please consider my fight to be for you also!

Our son is 10 and I have also seen this. We have handled this in different ways depending on what he is repeating or “stuck on” and trying to figure out why.... -When really ill, he would repeat phrases over and over and over for hours (and could be in different voice tones)...example: "all intrusive thoughts are not always real, all intrusive thoughts are not always real,......" Could not help with those, only reassure and comfort. -When questioning over and over- if they were irrational questions- example: "Do you think I had an accident in my pants or is that irrational?" I would answer him once and then if he tried to ask me that same question (even if worded a bit different) I would hand him a notebook and have him write his question and my answer down....when he asked again, I would tell him that “I have already answered that question” and he can read my response. He would say "I know, I know, irrational" and then stop. Often worked, but he is older. -When questioning for something that was not irrational but that he may just "want" ...for example a cell phone... (Which will be a NO for several more years). He may ask "mom can I have a cell phone” My answer may be something like....Yes, when the time is right. What kind would you choose? Why don't you do some research on the different kinds...etc. Puts the responsibility back on him and it becomes productive to some degree. (Until you need to sit through a 2 hour presentation of all the different makes, models, features, pros, and cons of every cell phone ever invented....LOL) I've actually been able to determine his improvement by the different "form" of repeated questioning...Does that make sense?