mk8898 Posted February 19, 2011 Report Share Posted February 19, 2011 I've only posted a few times; but read almost daily. Short and sweet, our DS was diagnosed at age 9 (May '09) by our ped with an onset of symptoms following a strep infection and mono. Looking back he showed symptoms starting in K with his first strep infection. He was put on abxs immediately, t&a surgery and did a 5 days of steriods and we drove to Dr. L in August of '09. At that time she put him on Augmentin and a 30 day steriod burst. The healing process was very slow from that point on. His main issue was panic attacks, fear of choking and fatigue and sleep issues. When school started in Aug of 09 we tried, but it just didn't work. He was so fatigued that it took all that he had to get up in the a.m. We pulled him out for that semster and home schooled. As hard as that was for us to do, we knew that his body needed the time to heal. He went back to school Jan.'09. I was soo scared to let him go, he was finally improving and I felt like I was throwing back to the wolfs. The summer was great! He was back to himself!!! Still seen a few signs of PANDAS but it was all managable. He started school again in Aug. 10 by December I was seeing him starting to backslide a little, frequent night terrors (big problem in the past just didn't know that it was PANDAS at the time), emotional, handwriting issues. I called Dr. L and she suggested a 2 week steriod burst. We did the steriod burst and let me tell you he was PERFECT!!!! It warmed my heart to see him so healthy and happy. For the most part we are still there . . .knock on wood. DS is very athletic and has a passion for sports. He plays AAU basketball along with his school ball team. The last several weekends he has metioned that the has had NO PANDA symptoms during his games. With anexity being a huge symptom for him it has very heart breaking watch him fight through the anexity while trying to play a game. DS is still taking Augmentin and will be long term per Dr. L. Dr. L has been great. We live in Indiana, so we are about 12 hours away from her office, so I am grateful for the phone conferences that we have had. All though PANDAS does not seem at this point to be curable I feel like we are able to manage it daily with probitocs, augmentin, omega-3s, multivits, and other meds for his sinus issues and steriods if needed. I know from always reading that storys of healing are not often posted and I felt like I should share our story. Healing is very long and takes time, but we were able to get better. I do feel that our son is a mild case compared to others; but is probably b/c we were able to diagnose and treat immediatly. We have been very blessed with local doctors that have supported and helped us along with way. As much as I hate this disorder, I feel very blessed that God has given us such great people to help us through this journey. Link to comment Share on other sites More sharing options...
Phasmid Posted February 19, 2011 Report Share Posted February 19, 2011 Wow- great to hear your story. Thanks for posting. So happy your son is doing so well! Congrats! Link to comment Share on other sites More sharing options...
SSS Posted February 19, 2011 Report Share Posted February 19, 2011 Thank you for posting! Wonderful to hear :-) Link to comment Share on other sites More sharing options...
NVAmom Posted February 19, 2011 Report Share Posted February 19, 2011 Thank you for taking the time to share that healing is possible. I pray he continues to be symptom free. Link to comment Share on other sites More sharing options...
Fixit Posted February 19, 2011 Report Share Posted February 19, 2011 So good to hear...thank you for posting, it also good to hear the different approaches to healing! Link to comment Share on other sites More sharing options...
thereishope Posted February 19, 2011 Report Share Posted February 19, 2011 Glad to hear things are going well! May your son and family continue to find health and happiness. Link to comment Share on other sites More sharing options...
SarahJane Posted February 19, 2011 Report Share Posted February 19, 2011 Thank you very much for the happy news. Wishing you & your family continued healing and health! Link to comment Share on other sites More sharing options...
momcap Posted February 19, 2011 Report Share Posted February 19, 2011 Great news! Awesome! May he continue in health and wellness! Link to comment Share on other sites More sharing options...
cwmom Posted February 19, 2011 Report Share Posted February 19, 2011 Thanks for sharing your story! I feel like we have similar kids. My son too plays travel sports (baseball and basketball) thank god because when he was in the worst of the PANDAS in 2008 basically fits of panic, anorexia, severe OCD the only thing he could do was play baseball. He couldn't interact with his team mates but he played. He was fine for 2 years (except for TICs after flu last winter) But this fall bad FLARE after virus - severe anxiety finally getting better. We are in the process of trying to get IVIG (denied x2 despite low IGG IGA...) I think think of this illness as a chronic condition that flares and remits but it is so nice to hear happy stories! Link to comment Share on other sites More sharing options...
P_Mom Posted February 19, 2011 Report Share Posted February 19, 2011 I have been wondering about you guys Michele...... Thanks for the uplifting update..... Great news! Link to comment Share on other sites More sharing options...
Mary M Posted February 20, 2011 Report Share Posted February 20, 2011 Thank you for sharing...it is so improtant for all of us to hear stories of health and hope. Mary from Michigan Link to comment Share on other sites More sharing options...
butterflymom Posted February 21, 2011 Report Share Posted February 21, 2011 (edited) = Edited October 5, 2015 by tampicc Link to comment Share on other sites More sharing options...
momaine Posted February 21, 2011 Report Share Posted February 21, 2011 thank you for sharing your story. I am so happy for your son and your family. Link to comment Share on other sites More sharing options...
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