initial testing for PANDAS

[amychris03]

Hi-  I just recently read about PANDAS in the fall and thought this may be the reason for my son's tics, anxiety, anger issues, etc.   I just wanted to share his story and see if you had any suggestions before I meet with his Pediatrician on Friday and go from there.   My son has  no official diagnosis for my son but after learning about PANDAS online, I am almost certain that has been what has been going on with him for years (started in first grade, currently in sixth).  He has struggled with strep throat since he was 18 months old.  He had multiple cases each year but it was always one case below what is recommended for tonsil removal, so he didn't actually get his tonsils out until first grade.  He had some anxiety issues in kindergarten but we attributed this to our recent move (husband is in the military).  In second grade, in addition to anxiety, he developed some tics.  Mostly blinking his eyes or moving his head to the side.  He had his tonsils out in first grade, and these symptoms finally faded.  He has been very healthy ever since then, rarely even getting a cold.  The anxiety would often come and go, and eventually anger issues surfaced- though mostly related to his siblings.  He would yell at them and almost go into a rage out of know where.  We started him in therapy, and this seemed to help substantially.  He was able to calm himself down more successfully, and was doing well in at least trying to participate in school (he is very smart but rarely participates in discussions in school due to anxiety when speaking). About a month ago, his three siblings all got strep throat, about a week- ten days apart from each other.  Ive been sanitizing/swapping out tooth brushes and tooth paste like crazy, but last week he suddenly had a low grade fever, headache, body aches, cough and congestion.  These symptoms kind of went along with the flu that was going around his class so I treated it as such and never took him to the doctor as it resolved in three days.  However, since then, his tics are back for the first time in years (rolling his eyes up into his head and grimacing- he says his eyes hurt),  he's had major anger issues with his siblings, and his grades in math are dropping (he has had an A+ all year and now a B).  I have an appointment with his Pediatrician to discuss this on Friday, but just wanted some advice for what to bring up.  Should he get tested for strep even though he's been fever and symptom free for a week?  Would it make since to titer him since its been so long since he was frequently getting strep?  Is there anything I can do in the mean time to help him?     Sorry if this is long winded, and Thanks in advance for any insight!

[makeitfromscratchmom]

Most definitely get him tested for strep and not just the in office one but the one they send out. If the other kids had strep he probably did too but it looks different. My son when through having untreated strep and then we found out six months later when my daughter was diagnosed with PANDAS that he too had it and was having very similar symptoms to what you are describing. He was diagnosed PANDAS and we had to figure out the best antibiotics for him. Not all worked the same. We also had changes in school, etc that I thought was the reason but it was in fact strep that is still in the system even without strep symptoms. I hope this helps.

[bobh]

Try not to put all your eggs in the basket that belongs to your pediatrician.  He may be helpful/onside, or in the worst case, believe the condition to not exist.  Actually, that's not the very worst case - that would be the scenario of a poor mom beside herself, and the pediatrician (believing the condition to not exist) calling children's aid.  In a couple very rare cases, it has been that bad.

Here's hoping it goes the better way ... let us know.