I am new to the forum, and was hoping to get some advice/opinions on stopping the prophylactic antibiotic treatment for my 7-year old son.
In October 2014, he started exhibiting sudden onset OCD type behaviors (germophobia, excessive apologizing) and anxiety. Initially, we thought that this was his response to a recent death in the family, and tried to deal with it as best as we could. He continued going to school, but was begging to stay home every day. After reading about PANDAS, we decided to have him take a strep test about 6 weeks after the symptoms started and he tested positive. After 10 days of Amoxicillin, he returned back to (at least very close to) normal and we thought we were done with it. In February 2015, he suddenly started asking repeatedly if someone had spoken to him and checking that he had heard everything correctly. He also said that felt like he had to repeat what he had heard in his head. The next day he had a positive strep test and received antibiotics. The following week we saw Dr. Swedo at NIH who diagnosed him with PANDAS, and prescribed 30 days of Augmentin. She also recommend CBT and prophylaxis at least for 6 months and possibly through the elementary school years.
My son showed improvement quickly after starting the antibiotics and was back to very close to baseline within the next 5-6 weeks. All in all, the episode was very mild and did not seem to cause him much distress. He happily went to school the entire time and did not show any symptoms at school. Since then he has been on a daily prophylactic dose of Amoxicillin and he did 7 session of CBT. We are also now giving him fish oil, vitamin D supplement and probiotics daily.
In the last few weeks, we’ve seen 3 PANDAS experts (Neurologist, ID doctor and ENT) in the area, who all confirmed his diagnosis but recommended stopping the long term antibiotics. He also was considered only “borderline” for benefitting from tonsillectomy, so we have decided against the surgery.
The current plan is to stop the antibiotics after the international trip that we are taking this summer. After that there doesn’t seem to be any other plan than to just wait and see. I want him off the antibiotics, but am also very nervous about it. Right now he is very happy and healthy and I want to keep him that way.
Any advice/opinions from those who’ve btdt? Thank you very much in advance.