BriCanady

My son was diagnosised with Pandas after the Swine flu....normal child, who changed overnight. He had an IVIG in November and is improving daily. He still has lots of tics.....

Thanks so much for your response! Anyone else? I can always ask the doctor or nurse, but I value your collective experiences at least as much. [/quote My son had an IVIG in November and was given benedryl prior to the IVIG. I had forgotten that as a toddler, he had "rage" episodes with benedryl, and we hadn't given it to him in many years. He had a "burning reaction" the first night and the following nights they "watered down " the benedryl. This helped but it still burned.....just something to think about...

..Can't cross over numbers when using calculator/computer...my son is in GT Albegra class and it took him six hours to complete a test because he can't "go across/over numbers"..he must move his hand around the calculator to the numbers on the outside first and if he touches another key he must start again...same thing with letters on the computer. Thank goodness the teacher is a friend and called me to let me know what was going on..she tired to break his "pattern" several times and kept incouraging him to move forward....his grade was a 97 !!!! I do want to mention that he had an IVIG on November 13th and most of his "tics" have disappeared !!..still does "What if" mostly late at night, when he is tired....I was amazed to read that other children say the same things....the furball comment really hit home...wow!!!! This thread is very helpful....great idea !!!

Wow...I didn't know the name for my son's "what if's?"...magical thinking.....touching a green block in the carpet and then saying..."Great, now I have to marry a green person"....You should see the looks I get when I tell people this... how about: holding spit in the mouth breathing in before reading each new sentence.. can't cross over numbers when using calculator/computer can't sit on lines in carpet

Lauren's symptoms are both highly visible and very socially acceptable (vs. scary pychiatric symptoms, horrible tantrums, your-child-needs-to be in a mental intstutution, or just-call-super-nanny type of behavior.) The general public can easily empathize with her without dealing with the "stigma" of mental illness (that most of our kids, if we were to put them on tv, would face. ) I have made a few posts recently about my 13 yr old son, whose was diagnosed with Pandas. His trigger was Swine Flu and I knew immediately something was wrong with him. No prior tics etc....so, yes an "older" child can develop Pandas. I am so thankful for this forum and all the information I have gathered from it. It took 3 LONG months for us to get a diagnosis, which is nothing compared to the length of time many children on this board have suffered. But we are all here for the same reason...knowledge to help our children. I think we should be encouraged by Lauren's diagnosis and thankful that the word is getting out. I am confused by some posts....questioning the length of "time" it took to diagnosis her. All our children are suffering, some years but some just months. My son was fortunate and received an IVIG within 3 DAYS of his Pandas diagnosis. He is improving daily and I thank all of you , who have posted on this board because it truly helped my son.

My son had an IVIG in mid November due rapid onset of Pandas. We were able to find a neurologist in New Orleans , who believed and wanted to help our son. Our insurance company covered the IVIG, but my son's "diagnosis" on paper was ADEM. His neurologist fought our insurance company to get the procedure covered. My son did suffer with asecptic meningitis afterwards, which was treated with a steroid for 5 days . During this time he was extremely moody, had many tics etc...but by day 3 , he could write again.... My question is...since we believe his Pandas/Pitands was viral, would he still benefit from a prolonged antibiotic? If so, could you please post any information, I can take to the PCP to help him understand the importance of this....BTW-follow up with neuro isn't until late December....she wanted to give it a month , to "see" what happens... Thanks, Bri

They plan to follow up with steriods because Jude's original "trigger" was swine flu, which is viral. We tried aug ( 1800mg per day) for 14 days for a sinus infection about three weeks ago and his tics etc. stayed the same. His IVIG treatment is as follows...10 hours per night @ 60ml...for 4 nights...( it took about three hours to "build up" to this amount) Has anyone else had a spinal tap prior to the IVIG ??? I understand the reasoning behind this procedure but my son was freaked out about the whole procedure....

I posted a few weeks ago about my son starting with OCD tendencies after the swine flu, and we finally saw a pediatric neurologist in New Orleans , who is fabulous. Dr. Allison Conravey, who believes in Pandas/Pitands. She wasn't that familiar with Pitands, but read all the information I brought her. Which included, blood tests, MRI,EEG , school work and lots of information on Pandas . She immediately suggested IVIG but contacted Children's Hospital in New Orleans for a neuro pysch exam as a baseline first. She called our insurance company and argued my son's case and they approved both procedures.( They did a spinal tap too..) We started the IVIG at 10:15pm tonight...Friday, the 13th.....LOL ( My son's immunologist and PCP both were in agreement to try IVIG)....

I'm new to the board and I appreciate all the information I have accumulated from here. After reading so much about the swine flu being posted , I felt I must post. My son was a healthy, well balanced 13 yr old boy until he contracted the swine flu in late August.He went from a straight A student to not being able to write or read, in a matter of 48 hours. His pediatrician said OCD and here is your Zoloft. After much research and numerous doctors , we have received a diagnosis of PITANDS. BriCanady,I'm not sure I'm understanding your post. Are you saying that "contracting" the swine flu is what started the PANDAS/PITANDS episode for your son? what are his symtoms? could you explain more? At 13, he never had any tics, ocd, or other issues? Forgive me, but what made the doctor assume PITANDS,-- "not able to read or write? It sounds as tho he was affected by the illness. Is he recovered from that episode, or is this ongoing? How are they treating him? so sorry, I'd really like to know more. Are you then FOR vaccine, or against? I think either way is probably risky, but for those of us who already have the immune or neurological problems, we don't want to add fuel to the fire, you know? Faith Faith...IMO on what happened to BriCanady's son: He likely had a low grade undiagnosed PANDAS episode years b-4 (that set the wheels of PANDAS in motion). Symptoms may have been mild and transient, perhaps low grade undiagnosed OCD, anxiety, emotional lability, urinary issues, ADHD, sensory issues...anything. So, when H1N1 hit that triggered a major exacerbation and PITANDS/PANDAS was finally diagnosed. Our dd also had an exacerbation from (likely) H1N1 in June (this is where her Cam Kinase ll skyrocked up to 253%...which is the highest # Dr. Cunningham has ever seen)...so H1N1 definitely can be a big non-strep trigger in PANDAS kids. Faith, EAmom's post is exactly what happened...this is ongoing ...my son had a few "issues" before the swine flu..nothing that couldn't be handled, anxiety, emotional lability, that we chalked up to pre-puberty...once he contracted the swine flu , he was a changed person. He can no longer write without scribbling, erasing and scratching out numerous times...germ and food phobias, seperation anxiety, anger, hostility, tics etc...Reading is a lost cause, he went from 45 minutes of homework to 5 hours of homework every night. ...His pediatrican said he had developed "OCD" overnight...and prescribed Zoloft. I'm sorry but I couldn't accept this answer.....we sought help from a therapist, who had recently read Saving Sammy. And our journey began, I found a family practioner to listen, who referred us to an immunologist. After testing for strep, west nile, cat scratch fever, lime disease, lead poisioning, MRI, EEG etc....he was given the diagnosis of PITANDS. My son did recover from the swine flu after a week and his symptoms weren't so bad..after about three weeks and several visits to the therapist, he came home with a sinus infection, and his condition worsened. We did a round of antibiotics and his symptoms improved slightly, but his "original" infection was viral not bacterial, so we are ruling out any other type of infection before we try steriods. ...my son's immune system is comprimised, unfortunately, I don't know when this happened but I do know he is suffering, and I am searching for any information that can help all our children....I have emailed Dr. Swedo and DR. K and both are in agreement that the Swine Flu triggered my son's PITANDS... So, no my daughter will not receive the H1N1 vaccine....

Yes, this is what I believed happened. ...H1N1 triggered a major exacerbation of his Pitands. After recovering from the swine flu his symptoms were improving , three weeks later a simple sinus infection caused him to take a downward spiral.....his strep tests were within "normal" range , it has taken several different specialists and numerous blood tests, MRI, EEG to rule out West nile, lead poisioning, cat scratch fever, lime disease etc....his immunologist has diagnosed him with PITANDS... EAmom....thanks..

I'm new to the board and I appreciate all the information I have accumulated from here. After reading so much about the swine flu being posted , I felt I must post. My son was a healthy, well balanced 13 yr old boy until he contracted the swine flu in late August.He went from a straight A student to not being able to write or read, in a matter of 48 hours. His pediatrician said OCD and here is your Zoloft. After much research and numerous doctors , we have received a diagnosis of PITANDS.