Tuesday, July 10, 2012

been so long Update

It has been forever since i wrote on any of my blogs..  But this would be the week for me to update here at the PANDAS blog. 
Things with Sweet Pea are ok.  Not 100% but what has become the norm.  She goes up and down depending on what her immune system is doing..  Mostly she is good, but she has little flare up of PANDAS symptoms every time she is exposed to anything.   She is still on daily antibiotics 250 mg of Keeflex once in the morning and  once at night..  But she is living a normal life for the most part.  she will be entering the 5th grade in the fall and made the 5th grade football cheer leading.  She is still playing softball and Volleyball and just having fun.. today she is having a mild PANDAS flare with alot of crying and moodiness..  She spent last week with my parents and my sister and all her cousins.. and I think my nice might have been sick.. because Sweet Pea has been having mild flares every day since being home. 

BUT now for the big news which i haven't blogged about..  Mr Man.. our 12 year old has PANDAS Also.   His is really bad.  He has been dealing with it for the last 10 months.   it came on after having his 12 year vaccines.. a few weeks later he got sick.  I thought it was strep because his throat was killing her he ran a super high fever and Because Sweet Pea was reacting badly to it.  Got him into the doctors the 1st day of the fever.. They did a rapid strep it came back neg they didn't treat him just sent us home calling it a virus.  He was sick for the whole week with the fever and just feeling awful with his throat killing him..  Two weeks later like over night.. He was having major fears and anxieties and a few days after that he started ticking started with eye blinking and head turning ticks..  I got him into the doctors thinking it was PANDAS but they wanted to rule  out other things because he was in football at the time and had taken some helmet to helmet hits..  the day of his EEG his ticks became so much worse and he started running a fever.  Got him right back to the doctors and that day he tested Pos for strep...  you think with me already having a PANDAS child and Mr Man having PANDAS symptoms and Strep at the same time this would be a no brainer for the doctors but that isn't the case... they wouldn't call it PANDAS.   Long LONG story short it took us 3 months and Mr Man getting worse for them to start treating him with antibiotics and steroids.. which helped alot..  didn't get him back to normal though..  by December 2011 he couldn't sit up he couldn't walk, he laid around flopping around like a fish out of water.. that is when they started treating PANDAS...  it got him to walking playing, back to living but at a different level then he was...  He still had anxiety and OCD fear issues, just not as  bad as they were, he still had none stop movements and tics.. just Not as bad as they were..   they would get him Alot better then he would be exposed to something and they would get worse again.. 
At this point in time.. he is left with intrusive thoughts and fears, tremors in his hands and his head jerks backward every so many mins..  He hasn't been able to attend school since oct 2011 and is on home bound schooling with a tutor even though the summer since Oct- Jan he was unable to do that, he is doing summer school so he can move on to the next grade with his class.

AT this point in time.. the doctors feel he needs IVIG..  and He will be having that this Friday and Saturday  July 13 and 14, 2012..

I will try to remember to keep the blog updated with how this goes.. and also keep updating on Sweet Pea as well.

That is 2 of my 4 kids who have dx for PANDAS and we feel that our youngest Little Man also has PANDAS.. He gets mild PANDAS symptoms every time he is sick, but since he hasn't had anything Major the doctors won't listen to me(well the doctors here around us) the PANDAS experts I'm working with in NJ(Dr T) thinks I'm right but doesn't feel he needs treatment for it yet.. I just need to watch him and get him to the doctors right away and get him on antibiotics at the 1st sign of him being sick. 

So that is where we are at this time on this journey into the world of PANDAS.


  1. What is IVIG? And OMG! You poor thing! I wish we were closer. Glad you are finally getting help.

  2. Hi,
    We're going thru with our son swho has been tested positive for PANDAS by Drm Shulman in Broolyn, NY. We're considering IVIG as nothing really helps.
    Kindly update on the effectivness of the IVIG of Mr. Man.

    Thank You,

  3. Kim.. I'm so so very sorry your are having to deal with PANDAS with your son.. I am on my way out the door right now.. but will work at getting back here to do a post with an IVIG update.. but it is working, we are seeing improvement.. but the thing you have to remember with IVIG is that it's not a quick fix, it is a slow healing and I'll tell you all about it.. in a post with in the next two days if I can.. will be gone today and if the weather holds up tomorrow.. but will work hard at getting back her..