feedjke Posted October 26, 2009 Report Share Posted October 26, 2009 My son is already in a pandas episode but still goes to reg school. We have I believe 3 cases of H1N1 confirmed and 5 being tested. Now they will be doing vacs at school with the nasal vaccine should I worry about ds exposure to the kids that got the vaccine for the first few days or so. What have you guys learned so far as how this may affect PANDAS children? We are NOT getting the vaccine! But on the other hand Im worried that if we get the H1N1 it will be critical do to all the autoimmune things going on already. I'm considering home school at this point but I'm reluctant since my son already has issues socializing. If there it a bully within 5 miles he finds my son, all day every day. Now hes having the tics so we might as well send him to school with a bullseye on his forehead. Link to comment Share on other sites More sharing options...
thereishope Posted October 26, 2009 Report Share Posted October 26, 2009 Oh no. Just when you don't have enough to worry about. I was so scared about the nasal vaccine sbeing given to the kdis at school. I knew I did not want any of my children to get the vaccine and I didn't know how contagious children who received the nasal spray would be. However, my kids all ending up getting what they believe to be H1N1 anyway, so they should have a natural immunity now. So, I am just sending them to school. I don't know what to say. I'm sorry! Are they giving the vaccine during school hours? If they are, I would pull him out that day. For the elementary kids in our district, they are doing them on school property but after school hours. As for how contagious kids may be or for how long, I just don't know. Link to comment Share on other sites More sharing options...
pixiesmommy Posted October 26, 2009 Report Share Posted October 26, 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. Link to comment Share on other sites More sharing options...
BriCanady Posted October 26, 2009 Report Share Posted October 26, 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. Link to comment Share on other sites More sharing options...
thereishope Posted October 26, 2009 Report Share Posted October 26, 2009 I lucked out that my son only had a very minor blip in his behavior. It was only two occassions many days after a high fever. He's had small things surface with colds before so I was being very watchful. I thought we dodged any setbacks, but was worng. I am very thankful it did not last. I read that NY state may be mandating H1N1 vaccine and there might be talks about revaccinating for measles due to the outbreak. But know if that is true or not. If you have any questions in regards to vaccines, I like to visit www.nvic.org. National Vaccine information center. They will answer questions you have too if you contact them. Link to comment Share on other sites More sharing options...
thereishope Posted October 26, 2009 Report Share Posted October 26, 2009 I agree it was disturbing watching people wait in line for hours for the vaccine with their children. However, I am glad to say that 2 counties had leftover vaccine by me! All nasal because not as many people are able to receive it, but leftovers! 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. Link to comment Share on other sites More sharing options...
ajcire Posted October 27, 2009 Report Share Posted October 27, 2009 Do you think the sign means that they only have the mist.. no shots, no exceptions to it? Because otherwise that sign makes no sense. 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. Link to comment Share on other sites More sharing options...
faith Posted October 27, 2009 Report Share Posted October 27, 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 Link to comment Share on other sites More sharing options...
ajcire Posted October 27, 2009 Report Share Posted October 27, 2009 I lucked out that my son only had a very minor blip in his behavior. It was only two occassions many days after a high fever. He's had small things surface with colds before so I was being very watchful. I thought we dodged any setbacks, but was worng. I am very thankful it did not last. I read that NY state may be mandating H1N1 vaccine and there might be talks about revaccinating for measles due to the outbreak. But know if that is true or not. If you have any questions in regards to vaccines, I like to visit www.nvic.org. National Vaccine information center. They will answer questions you have too if you contact them. Wow Vickie, I had not heard that about NY... I am in NY and I really hope they don't mandate it here. I did cave and got my youngest nonpandas ds the shot because he has asthma and the pulmonologist was really adament about it but even if I wanted to for my other 2 I couldn't right now. It is just not available. The pulmonologist had it for my asthma child. Link to comment Share on other sites More sharing options...
zazuk2010 Posted October 27, 2009 Report Share Posted October 27, 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 Hi, two things. We live in California and I believe there is a law that says that you can not be forced to get vacinated but if you are not vacinated you must sign a waiver at the school stating that you are choosing not to vacinate your child. Not sure if this is a state law or a federal law. Second, with regards to Candy's post, both my twins were fine at their 5th birthday checkup last May. They both got the Chicken Pox vacination at that time. 5 weeks later, with no signs of any sickness they began having tics and OCD and wild raging episodes. Diagnosed with Pandas shortly after that. Blood tests showed slightly elevated ASO no other titers elevated. Responded well to antibiotics, but not enough. We just did IVIG this past week...waiting now. I will always believe that the Chicken Pox vacination played a part in all this. Pehaps only to weaken their immune system or perhaps the chicken pox (live virus) worked together with a minor strep infection to cause PANDAS. Either way.....we wil not be doing any more vacinations from now on! I signed the wavier at our school (not that they have been able to attend school yet this year due to PANDAS) . I will try to find out if this is a state or federal law and let you all know. Kari Link to comment Share on other sites More sharing options...
KeithandElizabeth Posted October 27, 2009 Report Share Posted October 27, 2009 Kari: I feel for you having to deal with this with twins... it is hard enough with one child. And it is really incredible that they both started showing symptoms at the same time!!! How did the IVIG go with both of them? Did they at least get to sit in the same room? Are they on antibiotics? And, what doctor treated them? Elizabeth Link to comment Share on other sites More sharing options...
matis_mom Posted October 27, 2009 Report Share Posted October 27, 2009 My son is already in a pandas episode but still goes to reg school. We have I believe 3 cases of H1N1 confirmed and 5 being tested. Now they will be doing vacs at school with the nasal vaccine should I worry about ds exposure to the kids that got the vaccine for the first few days or so. What have you guys learned so far as how this may affect PANDAS children? We are NOT getting the vaccine! But on the other hand Im worried that if we get the H1N1 it will be critical do to all the autoimmune things going on already. I'm considering home school at this point but I'm reluctant since my son already has issues socializing. If there it a bully within 5 miles he finds my son, all day every day. Now hes having the tics so we might as well send him to school with a bullseye on his forehead. A bad case of the flu last February is what started the whole PANDAS thing for my son. I don't know if it was swine flu or not, but we were all out for over a week. We all recovered and moved on, but he did not. It seems to me any major insult to the immune system can be a trigger, so I would be extra careful. Now his immune system is totally overwhelmed, so we are being extra careful not to be exposed to anything. We try to lead a normal life, and all of our homeschooling friends are aware of his situation and they let us know right away if anyone is sick in the family. I have to say homeschooling has been a blessing. I was able to tell right away when he started having concentration issues, and I can't even think how they would have handle it at school if he went for a bathroom break and did not come back for half-an-hour (because he's stuck in the bathroom washing his hands). Please feel free to PM me if you have any questions about homeschooling in general or strategies to get the schooling done with your PANDAS child. Isabel Link to comment Share on other sites More sharing options...
feedjke Posted October 27, 2009 Author Report Share Posted October 27, 2009 My son is still in regular school and everyday I want to pull him out. The H1N1, all the bullying and hes always picked on, the ignorance of the district, (Would you believe I have a sit down with the teacher and principal because this was the first time I had to send him back to school still symptomatic due to the antibiotics not working this time and the very next day the teacher sent my son to the principal's office because his eye crossing tic was making her uncomfortable. The principal told my son that he had better stop it or would be punished. My son told me and I just couldnt believe it, when I called to explain again that it is not something he can control she said and I quote "In my opinion he is doing it deliberately." I said yes you must be right he must like being called a freak and being constantly picked on. I was so angry I havent been able to call or go to the school since. Im afraid I will come unglued) And lets not forget the total joke of an academic program, my son is still not doing in forth grade math what he could do with me in kindergarten. He tested 3rd-4th grade math level in kindergarten and in all of those years he hasnt even been given an extra worksheet to challenge him. They tested him at my request and nothing more. I should also say this is a small school in a podunk little farm community. 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 Link to comment Share on other sites More sharing options...
matis_mom Posted October 27, 2009 Report Share 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 I wouldn't worry too much about social skills, especially if his being teased at school, what can he learn from that? My son has been homeschooled his whole life and is a rather popular little guy. We are lucky to have an awesome homeschooling group, and they are in plenty of activities with other kids. We've only moved to this town a couple of years ago, and they have formed wonderful friendships. I would encourage you to see what's available in your area and take it from there. A good number of homeschoolers do it because of special circumstances/special needs that were not met at regular schools, so they are in general a pretty understanding crowd. Hope this helps! Hang in there... Link to comment Share on other sites More sharing options...
thereishope Posted October 27, 2009 Report Share Posted October 27, 2009 From what I've read on this forum and another one, many PANDAS kids have had some type of reaction to the chicken pox vaccine. not necessarily causing their first PANDAS symptoms, but some have had shingles, rashes,and other problems as a result. My son got the chicken pox rash 2 weeks after his one year vaccination. I will always believe that the Chicken Pox vacination played a part in all this. Pehaps only to weaken their immune system or perhaps the chicken pox (live virus) worked together with a minor strep infection to cause PANDAS. Either way.....we wil not be doing any more vacinations from now on! I signed the wavier at our school (not that they have been able to attend school yet this year due to PANDAS) . I will try to find out if this is a state or federal law and let you all know. Kari Link to comment Share on other sites More sharing options...
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