EAMom Posted October 27, 2009 Report Posted October 27, 2009 My husband is afraid if I home school he will lose social skills. Everyday I worry about him at school, now more than ever I feel like that school is a germ infested ticking time bomb If the school personel are blockheads, if he is not being academically challenged, and if the other kids are not nice to him, and you think you can do it ... I would go ahead with the homeschooling. Don't worry about the social skills. There are lots of better opportunities for your son to develop social skills.
EAMom Posted October 27, 2009 Report Posted October 27, 2009 Welcome BriCanady! 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.
EAMom Posted October 27, 2009 Report Posted October 27, 2009 It's getting really bad. I have a friend online who is a nurse who was forced to get both the regular flu and H1N1 shots or she would lose her job. Tonight, the high school (just 3 blocks from my house) had a line of people IN THE RAIN for 2 blocks standing to get the H1N1. The big flashing light in front of the school said, "NO INNOCULATIONS- NO EXCEPTIONS!!!" I can't find anything online saying that you can't come to school if you have not had it, but that is the only thing I can figure that it meant. They were supposed to be doing both shot and nasal spray there for 5 hours today. Ugh. 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. How is your son doing now? Did you finally find a helpful doc? What treatment is your son receiving now?
EAMom Posted October 27, 2009 Report Posted October 27, 2009 It's getting really bad. I have a friend online who is a nurse who was forced to get both the regular flu and H1N1 shots or she would lose her job. Tonight, the high school (just 3 blocks from my house) had a line of people IN THE RAIN for 2 blocks standing to get the H1N1. The big flashing light in front of the school said, "NO INNOCULATIONS- NO EXCEPTIONS!!!" I can't find anything online saying that you can't come to school if you have not had it, but that is the only thing I can figure that it meant. They were supposed to be doing both shot and nasal spray there for 5 hours today. Ugh. Okay...I do not understand that sign. ???
faith Posted October 27, 2009 Report Posted October 27, 2009 lol, I had to read it a couple times too. still don't get it.
thereishope Posted October 27, 2009 Report Posted October 27, 2009 If they are giving it at the school, perhaps it is a reminder they will not give to the public...only enrolled students.
BriCanady Posted October 28, 2009 Report Posted October 28, 2009 Welcome BriCanady! 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. 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..
BriCanady Posted October 28, 2009 Report Posted October 28, 2009 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....
EAMom Posted October 28, 2009 Report Posted October 28, 2009 Bricanady, Is your son on abs now? which one? IMO long term abs are going to be important. Lots of folks on this forum have good luck with Azith...but Augmentin could work as well. A good dose and length of time (more than the typical 10 days worth) of treatment of the right antibiotic is important. Azithromycin has anti-inflammatory/immune modulating properties which might help, even in the face of a viral trigger...and it gets intracellular strep. My dd has been on Azith 250mmg/day since June 08 (54 pounds). We also had IVIG in Aug 09 as we were seeing exacerbations (although nothing compared to the *&&^% of Spring 08) despite the abs (when exposed to others with strep, when she got H1N1 and when she got fifth's). Also, many on this forum find that Advil/Ibuprofen/motrin helps with symptoms, so that is something else you can try while you are waiting to do the steroids. (Give with food.)
colleenrn Posted October 28, 2009 Report Posted October 28, 2009 I just wanted to post that my children with PANDAS had both H1N1 flu AND the seasonal flu (yes, aren't I lucky?) in the past month and with both flus I did not really see any increase in PANDAS behaviors with any of them. Colleen
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