What a horrible day!

[1tiredmama]

Today was AWFUL! I worked this morning, then went home, picked up ds, and made the 90 mile trip to an ENT. We got lost both coming and going, so EACH way took 3 hours! Much of that time in a city I avoid because the traffic and the layout scare me. I thought this visit to this particular ENT was just a formality as our PANDAS doc wants ds's tonsils out, regardless of how they appear.

 

Our PANDAS doc recommended someone, but when I called to make the appt, the wait was a few weeks out. His partner could see ds sooner. I called the PANDAS doc's office and asked if it mattered who we see. The receptionist told me that either doctor was fine--they both do tonsillectomies for the PANDAS doc.

 

Well, after the 3 stressful hours on the road, we find out that ds is not a candidate for a tonsillectomy. This ENT tells me that my son's tonsils are healthy and, given the lack of history of strep throat, there is no need to remove them. I agreed that I do not want an unnecessary surgery, but I also do not want to be sent back to the ENT later because we did not follow our doctor's advice in the first place. I explained to him why the PANDAS doc wants even seemingly healthy tonsils of PANDAS kids removed. And, this guy contradicted our doctor. I thought they were in agreement on PANDAS treatment protocol!

 

I could have gotten this same assessment 20 minutes from home! Geez, I could have done it myself! I'm ticked off over making a needless trip, and I'm absolutely exhausted! GRRR!

[Kiera]

Very sorry to hear of this wasted trip! I would however continue to persue it. Call Dr L's office again, explain what happened so they know this ENT will not comply, make an appointment with the 1st ENT and get on cancellation list. Check with Dr L to make sure this one will do it!! At least you know the way now Also, my ds's tonsils looked completely normal with only one ever documented strep infection, however tonsils were scarred and difficult to remove due to chronic infection and cultured pos for pseudomonas (adenoids also). So you never know. Be sure to increase antibiotic pre and post T & A, ask surgeon to give iv antibiotics intra-op and ask to culture Ts and As (not routinely done). My ENT was wonderful and obliged with all my requests and no-one was more surprised with the cultures than he!!

[MashedTaters]

So what IS protocol? We see the ENT tomorrow, and while i know he is the go-to for the PANDAS kids locally (the support group here said so too!) I don't know what the protocol is!

 

Off to google!

[colleenrn]

http://www.psychologytoday.com/blog/attention-please/201102/evil-pandas-scourge-the-brain

 

This article talks about the international protocol is a T&A for PANDAS. All 3 of m y kids had "normal" looking tonsils until they were removed- then dr saw what a mess they were. Same with my nephew- looked fine until they were removed.

 

Colleen

[MashedTaters]

http://www.psychologytoday.com/blog/attention-please/201102/evil-pandas-scourge-the-brain

 

This article talks about the international protocol is a T&A for PANDAS. All 3 of m y kids had "normal" looking tonsils until they were removed- then dr saw what a mess they were. Same with my nephew- looked fine until they were removed.

 

Colleen

 

 

That was a GREAT read! Thank you!

 

PANDAS sucks, but it's SO interesting to me, that everything we've been dealing with FOREVER ISN'T what they thought (bipolar w/mixed severe psychosis) and IS all about PANDAS! (and i'm so happy there's a cure (i say that loosely) too!)

[Kiera]

Problem is there's NO PROTOCOL for anything PANDAS! Even the few experts don't all agree on exact treatment, to use steroids or not, to pull tonsils or not, frequency of ivig etc, each is learning and accumulating info as they go. Hopefully protocols will be written someday on the info gleaned from treating our kids now!!