3boysmom

What state do you live in? If you are near a PANDAS doctor, it will save you time and money in the long run.

Sorry. DS is 11 NOT 1

Our DS1 is on his IVIG #2. We ae actually still in CT (Dr. B's). I have a questions: DS's mycoplasma numbers have gone from 1047 in March to 1256 in June and now 1457 as of the results that Dr B just went over with us. DS has been on Augmentin XR1000 for the strep issues but also 3 different antibiotics for the mycoplasma. Dr. B says that it is highly unusual for the mycoplasma to not respond to the Bioxin. "possibly a resistant form of mycoplasma". He is switching DS to (script packed in luggage.....think it starts with a "m" and is some type of cycalin? Anyway, if you have had a difficult time gettting rid of mycoplasma, what worked? Which medicine? Thanks for the help, Linda

I was hoping you got some responces because I need the exact same info!

SO HAPPY for your family....A WIN for the team!! That's how I feel when I read about one of "our" children doing well!!! I remember your dark days...they were sad and hard to read! When I read posts of despair with any of these sweet children, it brings back memories of our experience and I actually feel my heart beat faster and begin to have anxiety. It is so great to hear! I think it is strange that we both stepped away from the forum and then back again at the same time. You must have taken a break from here, as I did, after we met at Dr. B's. Hunter still asks about your DD, and how she is doing. (To tell you the truth, I think he was actually flirting with her a bit when they were at the pool) Normal behavior---yea! Please keep me posted and I will let you know how our first IVIG goes next week. Also, thank you again for hanging out with the other 2 knuckle heads.... Linda

I'm sure you all have checked for other co infections because you have so involved with all of this research through these years. ... How is your DD now? Will you be doing more IVIGs? Is she still on Antibiotics? Our history is that March appears to be the bad month for us. We think this is because dd11 gets sick in February. We will likely do another round of IVIG as we've had good results from prior IVIG's (one in 2009 and one in 2010). In the prior 2 IVIG's we saw 80-90% improvement. This is roughly similar to the results in some cases of Swedo's original study where she found children with acute symptoms and PANDAS consistent OCD symptoms had a 58% improvement one month out from before treatment and a 68% improvement one year out(i.e., this was by no means the cure-all, but there was sustained improvement in these very acute children). One of the better papers (meaning understandable) on why IVIG likely works is here : http://bloodjournal.hematologylibrary.org/cgi/content/full/115/9/1663 My summary of the paper is that they think IVIG works by either: Saturating all the Fc receptors on the APCs so APC never presents the auto-antibody Binding to a suppressor mechanism (currently unknown) that prevents the APC from presenting any auto-antibodies Binding to Fc receptors on the endothelial cells so auto-antibodies have no place to attach and die I think it is (a) -- namely that the APCs are saturated and never get around to presenting the auto-antibody and hence the cycle stops -- but who really knows. On the concept of co-infection, there's a lot to consider there. The literature seems quite compelling that Sydenham Chorea is a sequela to an untreated GABHS infection. There's something going on when the immune system can't clear the particular antigen. Perhaps this is what is happening in Lyme too -- the original antigen just can't be cleared. Perhaps it isn't co-infection as much as an inability in some people to clear the original antigen. The immune system does strange things when it goes into "backup mode". If we think that PANDAS is similar to OCD sequela in Acute Rheumatic Fever, then it is likely that PANDAS is a genetic disorder. Apparently about 3-6% of the population is genetically succeptible to ARF/SC. Beyond this genetic predisposition, they need the right strain, they would need to go untreated for GABHS, and about 30% of those would get ARF and about 20% of those would get OCD and/or SC. We do keep our daughter on prophylactic azithromycin, but have concluded that this at best minimizes the reaction but does not stop an infection or reaction. Antibiotics don't kill bacteria, they just help the body's own immune system kill the bacteria. So what we think is happening is our daughter gets colonized when exposed to GABHS, her body has an immediate response and produces the antibodies and the cycle begins. Buster I think you are correct about that theory. I also believe that some children are responding to other illnesses and vaccinations because they either -NOW have a messed up immune system or already had a genetic messed up immune system and so their immune system did not respond correctly to some of the vaccines (live virus ones included). Many of these kids seem to have had ear infection problems. Dr.L and Dr. B. believe he had strep in his inner ears. Also, my mom's dad had MS, my sister has systemic lupus, my husband's mom has rheumatoid arthritis, and......my husband has(had-passed) an Uncle with Saint Vitas Dance- Sydenham Chorea. Dr. L said that our PANDAS son also had S.C. and that he would not be a candidate for the YALE study because of that reason. I will let you all know how things go...thanks again, Linda

Our DS11 (then 10) was put on Prozac when this first began and we never heard of PANDAS. He went from OCD thoughts to sadness and "better to be dead" thoughts. Also, no inabition (spelling?-did risky scary behavior with out reguard to getting hurt) I believe the doctors said no SSRI because we were putting the chemicals on the wrong problem---totally NOT what they said, but that is how I took it---I was so overwhelmed at that appointment, that most things sounded like Charlie Brown's teacher---blah, blah, blah! I guess it might be like taking an antibiotic for a viral infection hoping it will fix the problem like it did for a bacterial infection just because they both gave you a fever---POOR ANALOGY...sorry. I will say that once we added the antibiotics and slowly removed the Prozac, that was when things began to finally take a more positive turn. Best wishes

Buster, after all this time I still can't do the multi, multi quote "thingy" correct!! I hope you can follow my answers to you! Thanks

So DS11 is on Augmentin XR 1000mg twice a day. Did you put DS10 on anything? Buster, DS 8 - (looks “Torrett’s” like) and DS 10 (that was having very bad night terror and beginning to baby talk) are both on Amox/K with Clav 500 twice a day. (Augmentin) They have both been on this since January the ASO is dropping but oddly the Anti DNase is rising with that 10 year old. Has not affected him at all academically. He made all 100s on his report card in all subjects and made a perfect score on the State tests. He has qualified GT for all subjects but we chose to have him help us (I teach Sp. Ed.) by putting him in an inclusion Regular ED. class to implement a peer program (like a circle of friends). I think that an education is not all about "the grades". Anyway they go for more blood ASO and Anti DNase today because the lab ran the wrong Anti DNase test and Dr. B wants it before the IVIG. This is a big decision and we too went for IVIG after the scary symptoms returned (in our case the eating disorder). I will tell you the first two weeks after IVIG were particularly difficult and made us wonder if we had made a horrible decision as almost all behaviors returned with intensity for those 2 weeks. Dr. K often says in his talks that the predinsone is there for the parents - to help them understand that it is an autoimmune disorder. In our case, our daughter was exquisitely sensitive to her sister getting GABHS. In fact when PANDAS daughter ramped in symptom we could invariably take younger sister in and she'd be culture positive. When symptoms subsided, we could take younger daughter in and she'd be culture negative. We decided to call this the "peanut allergy" equivalent. She just had to be around someone with peanuts to have a reaction. (I know, not very scientific, but what we observed). Buster, We too use the peanut allergy comparison; it does seem to help people understand a little bit better but it still feels like I am telling people that we just moved here from Planet Jupiter. DS 11 just finished his a one month prednisone taper. (Also did one a year ago.) Yup. We've seen exactly that. Buster, So hard to live with. One exposure and you begin that fight back to sanity (I'm sure their is a more sensitive word but, that is how "IT" feels) That hasn't been our experience I'm sorry to report. What we did see was a dramatic falloff of symptoms post-IVIG for approximately 6 months. Then when there was a fever, symptoms would return. Not disasterous like the last time, but say 40-50% of last time. These would subside, but there was a baseline drift. I guess the way I'd say our case went was if 100% was the worst, we got about 90% back when daughter went on azith, then when got sick again, baseline moved up to about 20% (i.e., 80% better than worst). Then sick again, baseline moved up to 40%. We did IVIG again, returned to about 10% for about 6 months. Then when sick, baseline shifted up again. We don't know how others have done, but that's what we see. Buster, I'm sure you all have checked for other co infections because you have so involved with all of this research through these years. However, I was hoping that since it does not appear as though we are dealing with Lyme or anything, that the IVIG would be what finally kicked this beast. To be honest I really discouraged that this treatment didn't help your DD. Dr. B said with his level of illness, it may take 3 treatments. (July-this week, Sept. & Nov.) Insurance will not cover so....$36,000 out of pocket. We have come to terms with this, but don't want to throw money at a treatment that will not really help if the money could be better spent on other treatments...but what other treatments? It is comforting to see you’re still checking in on here...this complicated illness needs your "brain power"! Thanks for all the contributions you have made; your posts have helped me to better understand what was going on when we first were searching for answers. How is your DD now? Will you be doing more IVIGs? Is she still on Antibiotics? Prayers and thank you, Linda

IVIG is something you have to feel very comfortable with before you do it. It is a commitment and it would be easy to look back and kick yourself if you have a rocky post-ivig period. We went to IVIG because my son's immune status was becoming affected by the PANDAS. In retrospect, I do wish we could have done it before puberty, because puberty throws its own set of behavioral issues into the mix! Totally agree about the puberty comment. Our DS is almost 12. I think I feel more comfortable about the IVIG now than a year and half ago (when we found "PANDAS" as our issue) because I know that we have tried all of the other less extreme things and they have brought us a LONG way, but he still has a immune system that is "quacky". We are hoping this will settle down his response to strep that OTHERS have and we don't want to miss that "possible window" as her gets older. Thank you for your help. How is your son doing now? I remember your name and reading some posts that were like ours. I think we are on the path to recovery for our sons but I hate to say that out loud...and before IVIG! Thank you, Linda

Thank you for your reply! So they will give the benedryl and motrin.? OK, did you bring food, snacks, games? How did your DD do? Did she get sick? Headaches? My son is very worried about throwing up...I hope that does not happen. We fly back the nest day..that scares me...the not knowing how he is going to respond scares me!!! The seeing things from "those dark days" enter our lives again, scares me!!! This was probably not a good time for me to stop taking Lexapro! Thank you again, Linda

I have not been on here for months, and like an addict, I have checked in today and now can not step away. I have found a need to reply to every post. Today my DS11 handed me a birthday card that he has been working on for a few days...better late than never. It said: "Dear Mom, I want you to know that I will love you forever. I also want you to know that I'm glad that you had a great birthday, you so deserved it. You are one of the most special and best things that ever came into my life and you do so much for me and the family, like busting your butt doing research on P.A.N.D.A.S. & contacting doctors and doing all the chores and stuff like that! Bottom line, my love for you is infinity!" Love, Hunter Thought I would share why I will not give up on this beautiful young man. Our children will use their experiences to do great things in this world. also, love the way that I CAME INTO HIS LIFE...I'm pretty sure that I was here before him! Good Night

Hi Vickie, Prayers that this will pass very uneventful! I have a good feeling that you were so "on top of it" that things will be fine. Prayers to you, Linda

I totally agree with Nancy, (momwithocdson) we went the SSRI route and became worse. I would test for Lyme and other coinfections first because you could waste alot of time going down the wrong path and many PANDAS kids get worse on SSRI. If you have exaughsted all of the medical reasons and testing then you could try the SSRI's - no harm done to his health for waiting to begin SSRIs. Rule out the PANDAS / PITANDS / Lyme (medical) route first. You know you will always wonder if he has some type of untreated infection and play the "what if game". This is an expensive journey...I get it (we have 3 boys that we ran all of the tests for) Prayers for your family

The big challenge is to stay strong and don't give up trying to find answers. Every child is different so don't get too confused by these posts and some of the things people are trying. Also, keep a daily log because as time goes by and you think you will remember all the things you have tried...you won't...also you may be able to see what has helped and what has not. If you are not use to being outspoken, you may need to go outside of your comfort zone to advocate for your child. (Speaking up to doctors or teachers....not ugly...I'm just saying: don't let your mama gut instinct get squashed because of intimidation) The best website for my family to refer to has been Pandasresourcenetwork.org You can find a support group in your area and it is kept upto date. When we began our search 2 years ago...when you googled PANDAS...you got websites to the black and white bear...no joke! We have come along way this past year and as bad as it is that we do not have all of the answers; at least we are not the ones that went through this 10 or even 5 years ago. We wasted a lot of time trying to find a doctor around here to help us and if they were willing to be open minded, we spent time and money trying to learn and then teach them...if you can get to a PANDAS doctor, it is worth it. (We did not get antibiotics soon enough and then we were in serious trouble as we then went into Sydenhym's Chorea along with the PANDAS. He was not testing positive for strep so the doctors would not give him antibiotics. The strep must have been hiding out somewhere because his titers were 1920 and not to mention Sydenhym's Chorea comes from untreated strep) Once the Augmentin XR 1000 twice a day began, the downword spiral stopped and the improvement began within days. (of course from my first post you can see that we are still on that road) One last but most important thing that helped me...prayer. Patience, Guidance, & Unconditional Love Be tuff mom, you will surprise yourself at how much this challenge will "grow" you! Linda One more thing I forgot...if you are married, be patient with your husband...from our support group it seems as though the men function in denial a bit longer. We have been very happily married for 22 years(waited 10 years to have kids) and this was by far the most difficult thing for us to go through as a couple. You take out your stress on the ones close to you. Try to support each other. We have come out even stronger, but it was difficult for awhile (especially when I was tired from searching on the internet all night)

The big challenge is to stay strong and don't give up trying to find answers. Every child is different so don't get too confused by these posts and some of the things people are trying. Also, keep a daily log because as time goes by and you think you will remember all the things you have tried...you won't...also you may be able to see what has helped and what has not. If you are not use to being outspoken, you may need to go outside of your comfort zone to advocate for your child. (Speaking up to doctors or teachers....not ugly...I'm just saying: don't let your mama gut instinct get squashed because of intimidation) The best website for my family to refer to has been Pandasresourcenetwork.org You can find a support group in your area and it is kept upto date. When we began our search 2 years ago...when you googled PANDAS...you got websites to the black and white bear...no joke! We have come along way this past year and as bad as it is that we do not have all of the answers; at least we are not the ones that went through this 10 or even 5 years ago. We wasted a lot of time trying to find a doctor around here to help us and if they were willing to be open minded, we spent time and money trying to learn and then teach them...if you can get to a PANDAS doctor, it is worth it. (We did not get antibiotics soon enough and then we were in serious trouble as we then went into Sydenhym's Chorea along with the PANDAS. He was not testing positive for strep so the doctors would not give him antibiotics. The strep must have been hiding out somewhere because his titers were 1920 and not to mention Sydenhym's Chorea comes from untreated strep) Once the Augmentin XR 1000 twice a day began, the downword spiral stopped and the improvement began within days. (of course from my first post you can see that we are still on that road) One last but most important thing that helped me...prayer. Patience, Guidance, & Unconditional Love Be tuff mom, you will surprise yourself at how much this challenge will "grow" you! Linda

He has been on Augmentin XR 1000 for a year and a half. I am not sure what the markers are but Dr. B. said that they are within what would be covered for immune deficiency. I am surprised that if our code is in their under approved codes that they could tell our doctor that his treatment plan is not O.K. Do they then come back with their ideas for treatment?...sorry, just being a smart a$$. I was really wondering if there is some type of free insurace advocacy group to contact to help us fight for coverage?

Yea!!! Kimballot, I have been away from the forum for a few months but yours is a name I remember. We joined the forum around the same time. We are preparing for our first of possibly 3 IVIG's with Dr. B. #1 is next week. Please advise on what we should do to prepare. Drink lots of water and what else?? please read my latest post or just advise off of this one. I pray that all continues to improve for you all!! Linda

Dr. B.'s office has been battling our BCBS of Texas for 6 weeks now - for Preapproval of IVIG. Our DS11 's tests have shown immune deficiencies and the codes the doctor listed are under the approved code list. However they are denying coverage anyway because they claim that we are not showing proof that other treatments have failed. WE DO NOT use PANDAS on any of the insurance requests because if you read their BCBS website, they literally have a section on PANDAS and why they do not cover it! We are getting an IVIG done anyway but with flight, car, hotel, and the fact that he is 11 years old so weighs 95 lbs (IVIG cost is by weight of the child) this trip on July 24-27 will be $12,000. and we are scheduled for one in Sept. and Nov. That means we will have paid $36,000. out of pocket in just a few short months! WOW-seriously Not to sound cheap, but we also have 2 other boys fighting this illness and pay for antibiotics for all 3 each month and $150. a week in therapy and we have a $10,000 deductable that has already been met! Help with suggestions please

Dr. B.'s office has been battling our BCBS of Texas for about 6 weeks and we were denied. We are going to pay out of pocket anyway, but then continue the battle!!! Good luck

I too am surprised that they would allow SSRIs in the study. You would think that they would need to use the Scientific Process of controlled variables. BTW-Prozac made our PANDAS son much worse and the 2 PANDAS specialists that we fly to see each said No SSRIs. This is a bit surprising. I do hope that your child is doing better whatever it takes!!!! Prayers to you and welcome to the family.

It has been about 6 months since I have posted and sadly I see many new names....sorry to those of you that are new and dealing with those dark days. I still see some of my long time late night cyber buddies that held my hand through the long nights of searching for answers (forever grateful). Here is as quick of an update as I can think to give. DS11 (9 when things hit the fan) He has been on Augmentin XR 1000 x 2 for a year and a half. We have also had 2 rounds of steroids and he was put in a private school with only 7 other kids in the class and teachers called us if anyone was sick. He is so much better than those scary months of dysfunction. I could be on here hours listing ALL of the things we have done over the coarse of these years: Cunningham’s on all 3 boys, T & A surgery on 2 of the boys, Flying to see Dr. Latamire, flying to see Dr. B., treating the dog, ERP therapy.....much, much more. Well, when it was clear that we were dealing with 3 PANDAS kids...I stopped getting on this forum and needed to be treated for Post Traumatic Stress. I am feeling stronger and ready to step back in the ring for yet another round with this beast. DS8 has tics but no OCD - treating with low prof dose antibiotics, DS 10 -titers keep rising (now 1920-which is where his brothers were when he woke up different) but not big issues & treating with prof antibiotics. We are attempting to stop the train wreck with the 2 younger brothers so that it never gets to the point that the first son did. (Of course it took a long time to get the first son treatment because we had never heard of PANDAS...you know the routine! I know I am rambling but I am tired: When I first read this forum 2 years ago I said to myself "that will not be us", "we will take the antibiotics like that kid SAMMY and be done with this illness!" "We won't need steroids, our other kids will not have this, and we will never get to the point of needing IVIG!" OK friends, I am here to now ask for helpful advice on what to do to prepare for IVIG for PANDAS DS11. I looked past all of that before because I was thinking that it did not pertain to us, now here we are. I see that some of my older posting friends that were hold outs like us have also gone the IVIG route. Praying all is well for you all!! IVIG will be with Dr. B on July 25 & 26. I remember something about drinking lots of water &.....???? I just want to say that DS11 is MUCH better than 2 years ago, but still not back to himself. We struggled with the choice of where do you say good is good enough and be happy with the progress that you have or as he gets older are we missing the opportunity to completely heal him. We are just worried that the IVIG will bring him back to the scary stage and he will not return & neither will we for hurting him. We came to this decision for IVIG because he misses his life and friends and as he gets older and more handsome each day...I am finding it harder to "keep my protective bubble around him". He is great until exposed to Strep then within hours we are battling our way through problems that take weeks to return from. (He isn't even getting the strep-just exposed to others that have it.) Finally let him have a friend spend the night, kid went home feeling sick in the morning, DS11 began the constant questioning and hand washing, later that day kid goes to doctor...Strep! We are hoping the IVIG with boost his immune system and this will not continue to happen. Thank you all in advance. BTW-we have been fighting BCBS of Texas and have been denied coverage.

We have 3 boys with different PANDAS issues, all kids can present differently. Our oldest son had issues that came and went over the years but when he turned 10 (almost to the day) is when "it" all hit the fan! PANDAS kids are said to be "canaries in a coal mine" because they respond to strep in others. Our boys are asymptomatic to strep, but when the 11 year old's OCD ramps up then the 10 or 8 year old son usually test positive. (sorry about spelling...on my eye phone and forgot my reading glasses!)

You should absolutly perdue. pANDAS! When some of us say "overnight" in hindsight we relize their were things over the years that we either explained away, misdiagnosed, or made excusses for, or just things we could not put our fingers on!.......the things you listed over the years are very much the same as our sons and many others on here, before the BIG "overnight" disfunction hit. Please continue to look into this! Blessings to you, Linda

Woodlands library on Lake Woodlands Dr. at 6:00 pm see you there, Linda