3boysmom

My husband and I are struggling with that same question....ds10 doing the best since augmentin XR began 30 days ago, however ADHD is what we now have to deal with. After all we've been through...ADHD is a piece of cake! Having said that, are we missing an opportunity to help him completely recover (by not getting IVIG) and not to mention he hasn't tried getting off antibiotics yet.? What if everything returns and he just isn't successful without antibiotics and now more time has passed, he is older, has had this longer...have we decreased his chances for IVIG to be successful? What if we say that this is good enough and then this bright child hates school and is failing? Will we always wonder..."what if?" When PANDAS hit the T.V. show "Mystery Diagnosis" this summer...will we even be able to get an appointment for an IVIG? Won't all of these doctors be overwhelmed? For right now, in THIS MINUTE, (which is how we have learned to live) all I want to do is take a deep breath, enjoy the relatively happy child, and take a moment to look up at the things in life that I almost forgot existed! I pray for each of you, your families and all of our precious children each night!! Dear Lord, give us guidance to make the best decisions for each of our children.

We went to our pediatrician today for a follow up phone conference with our Dr. and Dr. Nicoliades. We will continue another month or two with Augmentin XR. Our ds10 is doing well (as of now). The icing on the cake is...since our Dr. has been researching this along with us, he has been sharing the information with his other 2 Dr. partners. Now, today he shared with us that because of our story, one of his partners believes that she has a patient with PANDAS. And...our son has been seeing a psycologist for CBT who had never heard of this and is now researching all of the links that I have shared...he believes that this could be the answer to one of his other patients that he has just begun to see. So there you have it...possibly 2 children that may be saved from the road of psychotropic meds. and hospitals for who knows how many years!!! Prayer for all!!!

Brilliant!

I think many of us have had an uncomfortable disagreement with a neurologist/psyciatrist. Told us that their line of thinking is "you can't "Catch" mental illnesses" We left his office and kept seeking answers! Augmenton XR is what is working as of now. Crossing my fingers while praying.

Is PANDAS considered an illness or disease? When you seem symptom free, are you cured or maintaining/controling the symptoms? When do you officially say (and won't these words be awesome)...he/she used to have PANDAS?

Our son is improving greatly but too soon to say he is well and too scared to jinx this. If he seems to be well (except for our new ADHD) do you still do IVIG. If you don't move onto IVIG then will we miss our chance to be PANDAS free? I'm afraid to mess with success but do want to be proactive!

You all are amazing and such a wealth of information! I wonder if Pandas often hits our extra bright kids or are they just being discovered as having PANDAS because their parents are bright and go looking for answers!!! THANK YOU ALL!

Son had no signs of Strep and throat and 72 hour tests were negative, but ASO was 1726 and D-nase was 1920 . I know that ASO should be around 200 but what should D-nase be for a 10 year old? He has now been on Antibiotics Aug 1000 XR for 30 days and his ASO is 1470 and D-Nase still 1920. He seems to be doing much better, but how? His titers are not that improved and I think they sound extremely high! If his numbers are so high then how can he be doing better? And..why are they still high? We have been phone conferencing with our dr. and Dr. Nicoliates. Another call in the morning. Praying hard!

These are my exact thoughts! When Hunter was Diagnosed last month I went straight to the church and cried my heart out in front of the Blessed Mary statue. I thought about how she must have felt...the anguish!

Well written...does anything else even exist anymore?? Feeling isolated and empty and almost in a state of moarning...the loss of something...peace, laughter, friends, ...Must put my "super mom" cape back on and continue on!!! My heart aches for all of us moms...and what about the dads? They are the ones in quiet pain...don't often blog, call friends on the phone, express their fears out loud...Pray for them too!

Odd that you should ask that. I was just putting 2 and 2 together with the whole..."mom, I have an eye lash in my eye" statement. Just realizing that there is a conection to when he is struggling through an episode! Wonder what it means? Maybe just another form of "tic"???