My son is 10 years old. August 19th I took him to the Pedi. for Strep symptoms, Sore throat, Headache, temp 99, Nausea, Fatigue and general aching. Doctor said his throat did not appear to be strep and said it was a virus that was going around. September 15th I took him back to the doctor symptoms were still there and much worse. He had pain that migrated through his body It would go from his feet to knees, legs, stomach, chest, and so on. Every few days the pain would rotate around his body. He started to have shooting pains in his back, chest, head, stomach, feet, hands. The doctor ran labs on him and found nothing in the labs that she ran. A week later we came back again and I asked her to please check for Strep. 3 days later she called with a positive test for Strep A she prescribed 600 MG of Cefdnir for 10 days. Symptoms did not get better at all. He could not go to school anymore because the pain was so intense and he was always sick at his stomach, had a hard time even getting out of bed. We went to Texas Children’s Rhematology and the doctors could not find any reason for the pain and said they did not feel that he had Rheumatic fever and that they assumed that his Strep Test was a false positive that he was just a carrier and he had Depression issues and needed Elevil, PT,OT, Psychology and to be pushed back into school, we should show tough love. I then took him to an Infectious Disease Doctor and his labs showed a different story. ASO tilters were 390 this labs high was 200. And Anti-DNase B Strep Antibodies 1:1920 We then took a different look at what was happening. The Pedi and Neurologist that we had seen as well in those few weeks both said we should go ahead and start the Elevil. We then saw a Cardiologist and he said his heart seemed fine. We started 10MG of Elevil. We started to notice new behaviors, not wanting to eat meat, crying if we ate meat, crying for inappropriate reasons, Angry, Aggressive, not sleeping well, not wanting to sleep alone, obsessed with gaining weight, constantly cleaning his Electronics, could not concentrate, he also complained of his body moving when he did not tell it to, he could no longer take a bath without having pain all over his body. He said it felt like burning salt water all over him. His pained seemed to be getting a little better but not the behavior. The biggest problem was about 30 to 40 minutes after taking the Elevil he would have horrible stomach pains. We went to the Physiologist as suggested October 25th. She said it sounds like he has Pandas and we should change to an SSRI. The Pediatrician agreed and put him on 10MG of Fluoxetine. The pedi wanted us to stop taking the Elevil immediately. She also prescribed 600 MG of Cefdinir again for 3 weeks. He has been on the Medications for 3 weeks.
Behavior is better, happy, most old behaviors gone. Although, he still thinks he is not getting any better but the OT said that is normal for kids that have been very sick. Energy is coming back, but pain is also. It is not at all the same intensity as before but it is becoming present again. I have written several leaders in the country on PANDAS since I have not been able to find one doctor in my area that has a foggy clue about PANDAS, and they say my son is not typical with his pain but that they still do not know all there is to know about PANDAS. He has started to have insomnia and hallucinations. Are we on the right Medicines? Shouldn't he have gotten better from the antibiotic alone? Is Omnicef not the best antibiotic for treating this? Has anyone read studies where this kind of nerve pain fit with Pandas? The Neurologist told me the other day that he has to have Tics and much higher tilters to have PANDAS and I have not read that anywhere. None of our doctors have a clue how to treat my son and I live in one of the largest healthcare communities in the world. He is now off antibiotics and taking 20 MG of Prozac. Still says he feels pain but it is better but still has huge problem with insomnia and the hallucinations that are increasing and making me feel like we could be heading backwards.
