bgbarnes

Hello everyone! I know it has been a long time since I have been on the board- things have been well and manageable at it's worst. My Pandas DS9 is doing well and has some residual touchy OCD but is so so so so so much better. The latest labs show his Anti DNase B is in NORMAL range, ASO elevated but lower than the last test however the mycoplasma is up to 600 which is a big increase from the last labs over a year ago so he is back on 500mg zith and I can see improvements in behavior, temperament etc.... I still struggle with whether I should keep him on antibiotics or not all the time.. The mycoplasma have me the answer for now. He is thriving in school and is probably going to go to a new school next year that will let him accelerate in the subjects he needs to- 18 months ago when his standardized tests dropped by a years worth of knowledge I never knew if we would be back trying to deal with his acceleration needs. It is almost as if I have witnessed the brain healing right in front of me. My son will tell you the second IVIG made all then difference in the world. So we are really optimistic and happy. I have my son back!!!!! The question regarding throat clearing.... My dd7 had a staph infection on her leg( was given Bactrim) a couple of weeks ago but she has been clearing her throat ever since and I swear it coincided with the infection. I read that medicine can cause it but she is still clearing her that and has been off then medicine for a few days. I almost lose my mind every time I hear it- ds9 never had throat tics( he had eye blinking and lip licking at different times but not throat clearing- tics have not really been his issue) Of course I am trying not to freak out. She has also been a lot more emotional than usual.... Should I take her to my PANDAS Dr or am I over paranoid? Thanks Brandy

Hi everyone- Yes he is responding like a normal little boy with strep- NO PANDAS symptoms!!!! He was not on antibiotic when he got strep- I had taken him off of it a couple months ago. The alternatives we use are- my Dad purchased and uses a Wavemaker. http://www.greatlifetechnologies.com/wm.shtml and the other one is Theta healing with Marina Rose http://www.dnathetahealing.com/. After the last healing with Marina we stopped the antibiotics- she is AMAZING!!! He also takes Krill oil, Calmzyme(Transformation brand),Vitamin D and different things when my gut tells me to add something. So I actually have 2 kids with strep( my daughter now has it too) and it is a normal house with 2 sick kids (actually you would never know they are sick) Brandy

I have to share some good news...my PANDAS son has strep....that sentence may sound strange to all of you because it has always put the fear of God into me...however here is the good news. He is acting NORMAL. I told the Dr his stomach ache was not from strep because I "KNOW" when he has it due to PANDAS. His symptoms were really the exorcist syndrome, cognitive inflexibility and OCD. So it was pretty obvious when he was ramping up. We were both shocked when it came back positive because he is acting NORMAL!!! It means everything we have done is WORKING!!! We did 11 months of a double dose of zith. 2 IVIG's, supplements and a lot of alternative healing and I have to scream from the top of a mountain right now...he is showing NO SIGNS of a PANDAS exacerbation- wooooohoooooooo! A year ago I was depressed because I was afraid my son would never be normal again....I was afraid for what his future held...I want to share the beautiful possibility that is out there! Brandy

Thanks everyone! I do think about the board often and hope and pray that each and every child will have a full recovery. I know that it is here when I need it!! I also know one of the ways to beat PANDAS is to go live and not let it beat you down. I feel like every day we LIVE and breathe is a day we won. May each and everyone of us have a Victory today, tomorrow and always! Brandy

I know I have not been around lately, it is because we have been living our lives. DS8 is doing REALLY REALLY well, I would guess about 90%. We found out about PANDAS MARCH 29,2010 when a Dr suggested we look into it and it started an accelerated research plan by my family. He has basically been on antibiotics ever since and has had 2 HD IVIG. The results are unbelievable, my parents keep commenting how nice it is to have my sweet son back. He is still ornery and picks on his sister but he is so loving, cuddly and rational. His main symptoms were the rages, cognitive inflexablilty, sleep disturbances and what we called "touchy" OCD- his touching things evenly on both sides or a pattern. We have had a couple MINOR flares, but NOTHING and I mean NOTHING like it used to be. My son will say he feels great and that he thought at one point he was losing his mind- that is what PANDAS means to him that it was something that made him lose his mind. He has commented that he can feel when strep is around. I have said it before but after his first IVIG when I asked how he was doing HE looked at me and smiled and said it is all gone Mommy. I am not sure exactly what he was talking about but that was good enough for me. I notice some touchy when he is nervous or scared but it is really minor and I am probably the only one who notices it. He is now enrolled in an after school program that does advanced math...we did 2 HOURS worth of advanced math hoomework one night this week - with some complaining but it seemed like a NORMAL kid. I would love to find the Dr that thought he was severely impaired with ADHD at one point to tell him he read this week for 2hours and 45 minutes straight. He rarely wakes us up at night or wets his bed, if he does I generally can chalk it up to a loose tooth or a friend in the class had strep. There is a calmness to him. A peace-he seemed angry at the world for so long and now he is back to being a happy boy! We are still on the double dose (500mg) of Zith for his age/weight but when I went down and tried to go 3 days a week or to 250mg it started creeping back in and we went back for the second IVIG. we monitor his labs and that are dropping- very very slowly and have a number of things that are still considered high that we are going to keep fighting but I have my son back. He started playing sports again- I only have him go when he wants to-I will admit I am afraid for him to push to hard, get too exhausted, I don't want him to wear his system down, started piano lessons and he is active in cub scouts. He has friends, more than just the one friend he had last year at his old school and I don't hear from the school every other day. Between the teacher and what I saw at home she was my partner in identifying some things had changed in his behavior which led us to the 2nd IVIG. A far cry from the principal that was such a B*TCH last year. We elected to move my kids to a school that has another child with PANDAS in it and they have been AMAZING!!!! Some of you may remember some of my relatives were not very supportive. My soon to be ex-sister-in-law (yes that's right she filed for divorce)is not an issue because she is not going to be in my life anymore- or my brother's life which he now realizes is a blessing for him. The fact that my family did not want to be around her over her negative comments about ds- she said that I needed to stop looking for problems and deal with his behavior and spread a lot of negative stuff around the family about what she thought of PANDAS( not good) ironically if she only knew how much I had done over the years to deal with his behavior- that alone made me want to scream. We chose not to spend father's day with her(which was also my birthday) and she knows we ALWAYS get together and my brother told her we did not want to be around her.I had been bitting my tongue for years over little things she would dig at me but I took it because if my brother but when she went after my kid- forget it I was not holding back anymore and I did not need to ruin my birthday with her crap. Well our "shunning" her as she referred to it, tipped her over the edge and she asked for a divorce a couple months later. My brother stood up to her and within a couple months their marriage was over- don't get me wrong it was on a MAJOR downward spiral before that but I was supported in not having to deal with her crap and let me tell you how nice the Holiday's have been without her . My brother is realizing it was a blessing and ready to move on with his life, he had been married over 20 years and his kids seem to be doing OK. What has been nice is since ds has been well we have been able to focus on my brother and his kids. The family crisis has not been ds....that may sound strange but OMG it feels wonderful not to be the one in crisis and to be able to be present for someone else. The other horrible thing that happened is my best friends husband dropped dead out of no where- IT WAS HORRIBLE, they had a 6 month old, had bought a house 2 years prior and had only been married a year. I have also been able to be a support to her. I have emotional bandwidth to SHARE!!! A year ago I could not have helped anyone because my family was in MAJOR CRISIS. Today I can share some of that time and energy with others. So I have been living, my son has been living and growing and thriving, my family has been recovering and enjoying the simple things in life. I hope that gives someone a little lift if they are in a dark place because a year ago I thought I was losing my son and I had no idea what was wrong. My mind thought the worst at times about what type of person he was going to be because the boy he is today had been missing for a long time and we are so grateful to have him back. I would not be here without the women and men before me who taught me how to fight this beast! Thank you!!! Brandy

We just finished our second round of IVIG with Dr R yesterday and to my understnading the Prednisone and the IVIG have nothing to do with one another- so don't worry about interference. The IVIG is putting new antibodies in the the system for a long term result, the Prednisone is more about dealing with the right NOW and either shrinking inflammation or dealing with more immediate symptoms. We did the neurotransmitter test too- boy everything was out of whack for my son.....really helped put the full picture together for us. Is Dr. Infante doing the 1.5 over 2 days? IS he using Gammanex? Dr K believes the type of IVIG makes a difference and will only use Gammanex- We got Dr R to work with Dr K to follow his protocol exactly and he even made a comment about another patient has been doing better on the Gammanex than the other brand the child gets from another Dr. Good luck! Brandy

We found out about PANDAS March 29, 2010....RAGES were his biggest issues- He had had transient tics in his life but not at the time of this exacerbation. I did not think he had any OCD- I thought we ONLY had the rages....the more I learned the more I was wrong. I learned that the cognitive inflexibility, the repeating himself, the being stuck was all OCD. Then I noticed he had a "touchy" thing that he had to touch things evenly or in a pattern- my heart sunk- I had been very very very naive that we did not have any of these things. Through these boards I also learned about sensory processing issues- had an OT test him- yep, we qualify for that too- however I I can now see it is worse when exacerbated-but I have the OT's report and it is with the school to get him help when needed. I took aggressive action-spent a lot of money but I would do it all again because we got results- we did Cunningham, Igenex, Mycoplasma testing, allergy testing etc... among a lot of other tests the immunologist ( who has become the local PANDAS doc) wanted to see .... I am convinced my ds8 has had it for years. His titers were high, igg, mycoplasma and Cunningham test showed him in the high PANDAS range. What is sick is I was relieved that he was in PANDAS range because I knew in my gut this was it as I had been searching for years for a reason- TRUST YOUR MOMMY GUT- it is the most powerful too you have. We also tested with a Gastro to see if strep was in his stomach, saw his ENT and discussed his sinuses- they were clear. We did a phone consult with Dr K. We eventually got to a double dose of zith per day ( 500gm for his weight is considered twice the normal script- but what the ###### is normal anymore when you are talking about PANDAS.) We did an IVIG July 13th &114th 1.5 over 2 days as per Dr K's dosage- had our local Doc consult with Dr K and he does it to a T- which saves a TON of money!! The "touchy" went away after a couple weeks- my son was more relaxed, had little defiance( my son is a challenge on his best day but you could REASON with him) We kept him on the double dose antibiotic until about 2 months ago- dropped it to 25-gm 3 days a week. Did great until a couple of weeks ago- started having that defiance, some cognitive inflexibility, problems in school ad in the last days or so some really subtle "touchy" that he was trying to hide etc... he was changing before my eyes again. I upped the antibiotic to everyday this week and scheduled an IVIG for Tuesday and Wednesday of next week. When I talked to him about it he said Mommy I can feel the strep around me, I said what do you mean- he said- you know it is that time of year when everyone gets sick and I feel different I feel anxious and I have to act bad when I don't want to...... So looking back at it- the problems probably started shortly after the 3 month park post IVIG and that is when the antibodies die off- so it makes sense. We are no where close to where we were- he has had only 1 major cognitive flexibility episode and NO rages so we have made huge progress- a month ago I would have said the monster had left- at least temporarily . Let's see what this IVIG does and see more progress-but I am so grateful I have done the IVIG because that really did more than the antibiotics alone did. I will keep you all posted!! Oh the most important thing is the day after the second day of his first IVIG I asked my ds8 how he was feeling ( he had a headache the first night)and he looked at me with those sweet blue eyes and flashed those amazing dimples and said- "it's gone Mommy- it's all gone." Brandy

I have not been on the board in a while- life got in the way but I have to disagree with those that say don't do the test- unless it is a serious financial strain on you. From what I have seen if you can't get help locally eventually you WILL travel to an expert to get treatment. You don't want to have to wait for those test results once you have made the decision to do that- you will have wasted months. Part of our job as parents of these kids is to pave the way for the families that follow us, the original parents who had none of the resources that we do, have done that for us and it is time for us to pay it forward (IMO). We need to educate every doctor we touch, providing literature, test results etc... Maybe they don't get it the first time but if ALL of us keep hitting doctors with this information- it will have a profound effect on changing how Doctors react to PANDAS. Their initial reaction is FEAR because they DON'T know what to do about it- none of us like the unknown but we as the parents have no choice to attack it- they can make a choice to ignore it because they don't know about it but we can change that the more they hear about it- we can change their minds- there is evidence of that all over the country. The Cunningham test results did have a positive result in getting treatment for my son. I reacted quickly-we first heard of PANDAS March 20th of this year. I got immense amounts of information in a short amount of time and have a team of local doctors that will admit they don't know enough but are curious and most importantly WILLING. I could probably go to one of a number of Doctors that are not PANDAS experts for antibiotics in an emergency because of my determination. If we provide the successful results to many of these naysayers we may be the catalyst for the next doctor for taking this on as a cause. We will be doing our 2nd IVIG on Tuesday and Wednesday-last one was about 4 months ago and we have seen the 3 months shift as the healthy antibodies have left- but most importantly we are doing this locally at the Dr K recommended treatment dose (less than 5 miles from my home) because of the determination of a number of mother's in the area and a willing Doctor to help. Make no mistake the test results made a difference, not to mention it provides more cases for Dr Cunningham to cure this monster. Brandy

I know I have been MIA with the new job, school starting etc... but I wanted to get back and update how ds8 is doing 8 weeks tomorrow post IVIG. FANTASTIC!!!! :D A couple of weeks a go we had an episode of Cognitive inflexibility- it was once we got through it- it was middle of the range not the worst but not the easiest. Yes his eyes were dilated, it was a Friday after the first week at school- at a new school (and I held him back because he missed SOOOOO much school last year- so stress was at at it's height.)The teacher had had issues with him that day at school- wanted suggestions for how to handle(my heart sank on that one but have not heard back since!)He has made several new friends in his class- he had one main friend last year that was not a "good friend" if you know what I mean. Mainly because the kids did not think he was a "good choice" since he was disruptive in class etc. He is overall happier, overall calmer. I can't see any OCD AT ALL. My son will say it is there about 2%. If he asks for the door to be shut it is because he wants privacy b/c he is changing clothes not because doors have to be closed. I will touch one side of his head to see if he "needs" the other side rubbed and he doesn't grab my hand and rub it on the other side anymore. I have not seen the hand touching evenly since a couple weeks post IVIG. I still think he has some mild sensory issues but I can definitely say they get exacerbated by PANDAS and are really really manageable now. The deep interest in reading is back- he read 4 biographies the first 2 weeks of school- in the classroom. He finished the Lightening Thief in a couple weeks. He still moans about homework but we are working on it. Tonight at dinner he sat during most of the meal- had normal conversations with everyone was not hanging upside down or invading peoples personal space. He even looked at my husband and asked him about his hunting weekend. I changed the rules to no TV after dinner and I did not get an argument from him- normally any change would cause a MAJOR disruption. I bought a great responsibility chart this week for both of my kids- He is asking to do chores!!!! I still have to ask him a zillion time to do things when he is interested in something else but I think that is about being an 8 year old boy more than anything else. We are moving to a prophylactic does of Zith. We had been on 500mg ( a double dose) every day and we are moving down to 250 3 days a week. However he gave me the 250 script as if we were taking it every day in case I need to double up for something. The school is responding wonderfully and already letting me know when strep is in the school. We are thrilled with the results and are VERY HAPPY that we did IVIG so quickly. I know some of you are out there in the rough part of IVIG so I wanted to make sure you got a good story too!!! Once again I would not have been able to get everything done so quickly without all of you!!!! Brandy

My ds8 is 72 lbs and we are on 500 zith we started out on 250 and it was not doing the job- when we upped to 500 we saw a big difference. We have been on it for about 3 months now- going to the Dr on Wed to see what we do next -we are 8 weeks out from IVIG. Hope that helps! Brandy

I am shocked...thanks for updating! Looks like you can teach old dogs new tricks!

My ds has a spot of vitiligo on his back and it is an autoimmune issue. It popped up a few years ago and don't have any idea how it corresponded with PANDAS. HOWEVER when talking to our Doctor we were able to identify that he already had an autoimmune marker- which seems to help the PANDAS discussion. My dad has it but both of my parents have 2 autoimmune diseases each...so he got the genetic lottery! LOL!

We are definitely NOT getting any flu shots!!! Thanks for the heads up about the combined shots! Brandy

I don't know any Doctors in Charlotte- but I do have a Sorority sister who is a Dr in Sparta that has treated PANDAS patients before(found out on Facebook when I was posting about the Pepsi contest). Let me know if you want her information. I don't know how involved she is but she is aware, believes and is a wonderful woman. good Luck- keep fighting and trust your Mommy Gut! Brandy