We are looking for answers. Here is a synopsis I wrote up about what has happened with my son. Before this happened he was an easy going loving kid. He's always shy around strangers and new environments but other than that no anxiety. Just normal kid behavior. He is 5 years old.
He had a very bad sore throat the end of May. The doctor described it as big white patches. His glands were swollen. I remember that some time around this they did a strep culture and it was negative. Then he kept getting worse and his glands got really swollen. I took him in a couple more times and then they had me take him to the lab and get a blood test done. He tested positive for mono. She said not to do antibiotics because mono is a virus. We went to the beach the first week of July and when we got back he told me his throat was really hurting and he did not feel good. He started telling me that he loved me all the time - like yelling it at me. Started being concerned about things being wet and germs. Took him back in and they said it was just the mono and it needed to run its course.
The obsessive behavior got worse. Became more obsessed with germs. I started working in the mornings then and I thought he was just getting stressed because of it. Then school started and we thought now that he would be in this new routine he would do better and were just hoping that all the stress he had been going through would go away. He had a horrible first week of school - major separation anxiety. We had to push in the door (literally-lots of crying). That weekend he started having to go pee like 5 times an hour. That was the weekend he learned to swim under water and I remember my husband and I just could not believe how many times he got out of the pool to go and pee.
Then the next week on Monday night I noticed that he was doing some counting stuff on his hands when he was going to bed(this is the only time I have ever seen him do this). His Kindergarten teacher mentioned to me that Ethan is shaking at school. It was horrible - it was like it had taken over his body.
I got on the computer that night and did a search for sudden ocd symptoms/dramatic change in behavior. I found all the stuff on PANDAS. I made him an appt the next morning and we went in to the pediatrician. I took in all the stuff on PANDAS and wrote down all the stuff he was doing. She did a urinalysis to see if he had an infection and it was negative and then after reading the PANDAS stuff did a throat culture and it was positive. She started him on Omniceft. Within 3 days he was 95% back to normal. It was amazing!! We were so happy. Then after day 10 when the medicine ended the next day after he started obsessive stuff again. I took him back in to dr and they did culture and it is still positive - they put him on Clindamiacyn. He was on it for about 4 days and it did nothing. Then they put him on Keflex for 3 days and did nothing. Then put him on Omniceft again and within 7 days we saw dramatic results. He was 95% better. We took him in and they did a rapid strep and it was negative. They also sent away for culture. He had a great afternoon. He then started coughing. Friday he started saying a lot of anxious things. Friday night he ran a fever of 102.5...over the weekend it got to 103...104. Took him to the dr yesterday and she says he has croop. His obsessive behaviors are back ... he is worried about things being wet, germs, things being dirty, etc. I just called the pediatrician again to see if the culture she sent away was negative or not. He also spends a lot of time on the toilet and has had an upset stomach for awhile.
My husband and I are trying to figure out what we should be doing. What kind of medical specialist should he go to? Should I start him in therapy? Did you all work through your pediatricians? I see that diet and omegas and probiotics are very important. He also has very bad allergies...
Thanks for responding. Also how do all of you handle the grief of something is wrong...I guess I am starting to accept it but also feel like this can't be happening to my baby. : (
