Pandabearmom Posted October 7, 2016 Share Posted October 7, 2016 Hello. I'm a fellow homeschooling mom of two boys. Two years ago my youngest son, Noah, was diagnosed with PANDAS/PANS. It has been very difficult for our family, as we have had to travel out-of-state for doctors and treatment, because despite having a vast medical community in our backyard, there is a gross lack of knowledge and acceptance of this diagnosis. As a result, we've been very fervent in our attempts to raise awareness. This coming Sunday, October 9th, is PANDAS/PANS Awareness Day, and I'm asking for your help in spreading the word. I've created a website, thepandasproject.com, as well as a Facebook page (The PANDAS Project). It has information about PANDAS/PANS, personal stories, and resources that can be shared. If you have any questions, feel free to message me, or email me at thepandasproject@gmail.com. Thank you 😊 2 Quote Link to comment Share on other sites More sharing options...
aaplank Posted October 7, 2016 Share Posted October 7, 2016 Thanks. I have a friend who's son was recently diagnosed. I sent her your website link. Quote Link to comment Share on other sites More sharing options...
Laurie Posted October 7, 2016 Share Posted October 7, 2016 I was just reading about how the nasal spray flu vaccine might be associated with some cases of PANDAS. http://www.ageofautism.com/2016/10/cdc-nose-that-live-attenuate-influenza-vaccine-is-dangerous.html Good luck with your project, and best wishes to you and your family! Quote Link to comment Share on other sites More sharing options...
Noreen Claire Posted October 7, 2016 Share Posted October 7, 2016 My 7yr old most likely is suffering from PANDAS. we've had some treatment (not enough, in my opinion, and just enough, in my husband's). Stay strong, mama. Quote Link to comment Share on other sites More sharing options...
Pandabearmom Posted October 7, 2016 Author Share Posted October 7, 2016 I was just reading about how the nasal spray flu vaccine might be associated with some cases of PANDAS. http://www.ageofautism.com/2016/10/cdc-nose-that-live-attenuate-influenza-vaccine-is-dangerous.html Good luck with your project, and best wishes to you and your family! My son has never had a flu vaccine, but that's interesting. Quote Link to comment Share on other sites More sharing options...
Pandabearmom Posted October 7, 2016 Author Share Posted October 7, 2016 My 7yr old most likely is suffering from PANDAS. we've had some treatment (not enough, in my opinion, and just enough, in my husband's). Stay strong, mama. I'm so sorry your son has PANDAS. Hugs to you, it's a tough road. Do you have any providers in your area that specifically treat it? They tend to be far and few between, but it might be worth checking the PANDAS physician's network. If I can be of any help to you, please don't hesitate to contact me. Quote Link to comment Share on other sites More sharing options...
Noreen Claire Posted October 7, 2016 Share Posted October 7, 2016 I'm so sorry your son has PANDAS. Hugs to you, it's a tough road. Do you have any providers in your area that specifically treat it? They tend to be far and few between, but it might be worth checking the PANDAS physician's network. If I can be of any help to you, please don't hesitate to contact me. After DS7's most recent flare-up (his third), I did a lot of research online and truly believe that it is PANDAS that is causing his problems. Our pedi was open to listening, testing for, and then treating his strep infection. However, they are affiliated with Boston Children's Hospital, which may or may not accept PANDAS as a valid diagnosis, depending on the department/doctor/day of the week... Thankfully, he has tested clean since the antibiotics but he has retained some *quirks* (as my husband refers to them), mostly anxiety/fear issues. I would like him to receive some cognitive behavioral therapy to help him work through these *quirks* and have some tools to deal with them in future flare-ups, but my husband is not very fond of doctors and absolutely against therapy/psychology/psychiatry of any kind. This is one of the factors that tipped the scales for me keeping him home this year - keeping him from having to deal with these *quirks* in a classroom full of kids AND lowering his risk of catching strep again in the public school setting. I continue to research to help him the best I can from home. Quote Link to comment Share on other sites More sharing options...
Pandabearmom Posted October 7, 2016 Author Share Posted October 7, 2016 After DS7's most recent flare-up (his third), I did a lot of research online and truly believe that it is PANDAS that is causing his problems. Our pedi was open to listening, testing for, and then treating his strep infection. However, they are affiliated with Boston Children's Hospital, which may or may not accept PANDAS as a valid diagnosis, depending on the department/doctor/day of the week... Thankfully, he has tested clean since the antibiotics but he has retained some *quirks* (as my husband refers to them), mostly anxiety/fear issues. I would like him to receive some cognitive behavioral therapy to help him work through these *quirks* and have some tools to deal with them in future flare-ups, but my husband is not very fond of doctors and absolutely against therapy/psychology/psychiatry of any kind. This is one of the factors that tipped the scales for me keeping him home this year - keeping him from having to deal with these *quirks* in a classroom full of kids AND lowering his risk of catching strep again in the public school setting. I continue to research to help him the best I can from home. It sounds like you're doing the best that you can, and your son is blessed to have such a diligent parent! My son can't be in a classroom setting either- too many 'quirks', too many germs, and he just doesn't have the energy to get through the day. He's also immunodeficent, which is extremely common in PANDAS/PANS kids, and often overlooked. The fact that this diagnosis is controversial is mind boggling. The AAP recently accepted it as a diagnosis, and is now in the process of writing treatment guidelines. While it's a step in the right direction, we have a looooooong way to go before the stigma fades. It's frustrating. I will say I struggled with the idea of therapy as well, but cognitive behavioral therapy has been shown to be helpful in dealing with OCD and anxiety. Think of it as providing your child with a tool box of things to help them identify triggers, etc. It's tough, however, because the disorder is so unpredictable, that there's no guarantee that something that works this week will help next week. Hugs to you 😊 1 Quote Link to comment Share on other sites More sharing options...
cave canem Posted October 7, 2016 Share Posted October 7, 2016 I am so unaware that I don't even know what this is. What is it? Quote Link to comment Share on other sites More sharing options...
wapiti Posted October 7, 2016 Share Posted October 7, 2016 (edited) Thankfully, he has tested clean since the antibiotics but he has retained some *quirks* (as my husband refers to them), mostly anxiety/fear issues. "Clean" as in normal ASO and anti Dnase (strep titers)? If you haven't done this already, my suggestion would be to look at overall immune system health (e.g. IgG levels - total and subclasses - and IgM/IgE/IgA, at a bare minimum) plus additional common infectious triggers (e.g. mycoplasma, viruses). Edited October 9, 2016 by wapiti Quote Link to comment Share on other sites More sharing options...
wapiti Posted October 7, 2016 Share Posted October 7, 2016 I am so unaware that I don't even know what this is. What is it? https://www.nimh.nih.gov/labs-at-nimh/research-areas/clinics-and-labs/pdnb/pandas-frequently-asked-questions.shtml PANDAS is short for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. A child may be diagnosed with PANDAS when: Obsessive compulsive disorder (OCD) and/or tic disorders suddenly appear following a strep infection (such as strep throat or scarlet fever); or The symptoms of OCD or tic symptoms suddenly become worse following a strep infection Quote Link to comment Share on other sites More sharing options...
Pandabearmom Posted October 7, 2016 Author Share Posted October 7, 2016 "Clean" as in normal ASO and anti Dnase (strep titers)? If you haven't done this already, my suggestion would be to look at overall immune system health (e.g. IgG levels - total and subclasses - and IgM/IgE/IgA, at a bare minimum) plus additional common infectious triggers (e.g. mycoplasma, viruses). (My typing noises are causing compulsions in a certain someone who at this very moment is getting an infusion of IVIg...) YES! Thank you for this post! I agree that every child with PANDAS/PANS needs to have this testing done. I would add Lyme and Lyme co-infections, as they are a major PANS trigger. As an FYI- strep titers are only useful if you have a baseline number, and also keep in mind that about 30-40% of people do not produce a titer response to strep. Sorry you're a part of this club that nobody wants to be in. We know all about compulsions and Ivig in this house 😉 Quote Link to comment Share on other sites More sharing options...
Laurie Posted October 7, 2016 Share Posted October 7, 2016 Our pedi was open to listening, testing for, and then treating his strep infection. However, they are affiliated with Boston Children's Hospital, which may or may not accept PANDAS as a valid diagnosis, depending on the department/doctor/day of the week... Scary. Isn't that the same hospital that took Justina Pelletier away from her parents? Quote Link to comment Share on other sites More sharing options...
Noreen Claire Posted October 7, 2016 Share Posted October 7, 2016 Scary. Isn't that the same hospital that took Justina Pelletier away from her parents? Yup. Quote Link to comment Share on other sites More sharing options...
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