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Almost 2 Years Later


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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.

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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!

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