Kerileanne99 Posted October 15, 2015 Share Posted October 15, 2015 First off- A HUGE thank you to everyone who suggested I research PANDAS and PANS when I posted regarding the anxiety/sudden changes in my dd5's behavior. Without your help I sincerely doubt I would be on the right path...and her pediatrician actually agrees! We saw a substitute pediatrician, who very reluctantly agreed to test her for Strep, insisting that she had no symptoms and no sign....yet was positive. She has had less dramatic instances before, and each time had ultimately ended up with an ear infection. Her regular pediatrician told me today that he believes these were secondary to strep, which is what I concluded after the latest episode:( I am left completely appalled that more information is not available, and that the Hive was able to diagnose her before her regular pediatrician! So...what next? I bought a huge kit of Strep A tests for home, and we are monitoring. I pushing for a referral to a Focus group for eval as many of the symptoms have...receded? But are still present. Ped didn't really offer suggestions on day-to-day, just treating future Strep... Any suggestions? And another heart-felt thank you! Ped said these cases often go for YEARS before they are caught...I will never think of another acronym-labeled child again in the same light:( 3 Quote Link to comment Share on other sites More sharing options...
Starr Posted October 15, 2015 Share Posted October 15, 2015 You might try sending a pm to Jennifer in MI. I think she has a child with this diagnosis. 1 Quote Link to comment Share on other sites More sharing options...
Guest Posted October 15, 2015 Share Posted October 15, 2015 Well I am not happy that you have to deal with this, but I am SO happy this community helped you get the dx you need. I seriously cannot live without the Hive. This place is the greatest site on the WWW. 9 Quote Link to comment Share on other sites More sharing options...
wapiti Posted October 15, 2015 Share Posted October 15, 2015 Have her symptoms subsided? I recommend trying to find a doc who is experienced with this condition. 1 Quote Link to comment Share on other sites More sharing options...
Pandabearmom Posted October 15, 2015 Share Posted October 15, 2015 I have been reading these boards for a while, and when I saw your post my heart sank, and I immediately created an account. I have a child with PANDAS. It's very rarely as simple as treating a strep infection. If you are on Facebook, I strongly urge you to join the 'parents of kids with PANDAS/PITANDS/PANS group. It's a closed group, so there's some level of privacy. This has been an invaluable help to our family. PANDAS literally changed our world overnight and we have been in the fight of our life to try and get our son back. The majority of the medical community does not understand this disorder, and it's really important to be treated by someone who specializes in it. I am happy to help in any way that I can, so please feel free to ask questions. 5 Quote Link to comment Share on other sites More sharing options...
Suzanne in ABQ Posted October 15, 2015 Share Posted October 15, 2015 Send a PM to abbeyej. Her ds was diagnosed with PANDAS several years ago. I believe they're passed it now, but I'm sure she would be willing to share information with you. 1 Quote Link to comment Share on other sites More sharing options...
Lizzie in Ma Posted October 15, 2015 Share Posted October 15, 2015 :grouphug: :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
MercyA Posted October 15, 2015 Share Posted October 15, 2015 :grouphug: and prayers. 1 Quote Link to comment Share on other sites More sharing options...
Kerileanne99 Posted October 16, 2015 Author Share Posted October 16, 2015 Have her symptoms subsided? I recommend trying to find a doc who is experienced with this condition to talk about the future, such as whether antibiotic prophylaxis is warranted, what to do about the vaccination schedule, etc. We just saw our PANDAS doc again yesterday and are seeing an immunologist tomorrow and our lyme doc in a few weeks. We have been dealing with this for a year and a half without any relief. We have a medically complex situation. It's extremely controversial where I live. Our ped is against the idea (what? you mean the brain is located in a body, like with an immune system and everything?), as is our local children's hospital (like most, if not all, children's hospitals). I do not keep the ped updated. I agree with you that the willful-blindness is appalling. But, it's complicated. Sorry for the late response. The baby did not do well with his 6 month vaccinations:( I don't even know how to classify her symptoms. It HAS gotten much, much better. The day after I posted she was absolutely manic. Very scary. And she would just scream, high-pitched, on and on. She finally lost her voice and I can't say I was too upset by that. She is mostly herself, but is still suffering from OCD-type behaviors. Still having really vivid bad dreams, and lots of anxiety where she never did before. She is above and beyond crazy with movement. Yesterday I was looking at her handwriting and it has totally changed! She has had absolutely beautiful handwriting for a long time...and it is still good, but not nearly what it was. I am not sure what to make of that. I thought maybe it was an off day, but it has continued and she was upset about it. Also, she reads a lot, often aloud. She is very fluid, and reads with uh, extreme prosody:) but lately she will go back and read the same sentence over several times. When I ask her why she says she just has to:( I am frustrated because her doctor seems content to treat the strep and hope everything else clears up. I did but a huge supply of Strep A tests for home, but obviously this is only a tiny portion of it. Hopefully the specialists will have more for us. I feel awful. All those times in the past when we would see manic behavior for a brief period, horrid behavior that we thought was just a parenting issue. From experience, we usually knew these coincided with an ear infection (she never complains about being sick, ever). How much of this escalating pattern could have been avoided?! Quote Link to comment Share on other sites More sharing options...
Kerileanne99 Posted October 16, 2015 Author Share Posted October 16, 2015 I have been reading these boards for a while, and when I saw your post my heart sank, and I immediately created an account. I have a child with PANDAS. It's very rarely as simple as treating a strep infection. If you are on Facebook, I strongly urge you to join the 'parents of kids with PANDAS/PITANDS/PANS group. It's a closed group, so there's some level of privacy. This has been an invaluable help to our family. PANDAS literally changed our world overnight and we have been in the fight of our life to try and get our son back. The majority of the medical community does not understand this disorder, and it's really important to be treated by someone who specializes in it. I am happy to help in any way that I can, so please feel free to ask questions. Thank you for caring enough to come out of lurkdom. I am not currently on Facebook but would be willing to join for that. 1 Quote Link to comment Share on other sites More sharing options...
wapiti Posted October 16, 2015 Share Posted October 16, 2015 The handwriting difference is often mentioned in relation to PANDAS. The reading the sentence over is probably OCD. As for what could have been avoided, no one really knows. 1 Quote Link to comment Share on other sites More sharing options...
Tiramisu Posted October 16, 2015 Share Posted October 16, 2015 My dd went through huge behavior changes last winter and spring. It was very scary. One of our peds ran a lot of tests, including for the strep antibodies. She was not positive for that but was positive for having had mono in the last few months. So I think she may have gone through a PANS episode. It took several months but she is much better now, though I see the OCD type things more--nothing particularly disruptive to life but noticeable. 1 Quote Link to comment Share on other sites More sharing options...
Pandabearmom Posted October 18, 2015 Share Posted October 18, 2015 I would definitely get on Facebook for the pandas/pans group. There are so many knowledgable people in the group who are familiar with all of the doctors who treat this. My son has been to two of the best and I credit them with saving my son's life. The right doctor is a critical component. We have had a very difficult road, but that's not the case for everyone. If you have any questions, please feel free to PM me. Quote Link to comment Share on other sites More sharing options...
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