What could be the issue?

[cara615]

Saw our PANDAS doc today. She thinks ds is doing great. She thinks its a mild flare and should peter out. Last night though he had gluten without me knowing it. He snuck a chicken finger that was breaded with a wheat batter. UGH.

 

today his tics are not increased but did not decrease from the day before so i bet the gluten set him back a bit. Oh well.

 

Right now we are just keepin on and trying to live our life and enjoy every day as best we can. This PANDAS crap is totally robbing me of this time with my boys. Every day I need to sit and focus on the NOW and realize that time is moving on even thought I am stuck on all this PANDAS anxiety.

 

Its a battle everyday to enjoy this life but I am tryin to choose to do so.

[qannie47]

I know what you mean about the Pandas anxiety. Maybe they will come up with a new "Stress anxiety disorders for adults....induced by Pandas children" Ha...On a serious note, what has helped me a lot after my ds has recovered from a flare and doing well is accepting the reality that he will have another flare. I have no control, or not a lot over that...It helps me to enjoy one day at a time and reduces the pins and needles feeling of "oh oh..is it staring again?" Living like that is horrible. I tell myself, yes, he is going to have another flare someday, and we got through the last one, we will get through another one.....It's all I have to hang my hat on at this point....

[JoyBop]

Totally second what qannie said. We all go through what you are experiencing from time to time. We have to realize that this is our new normal for now. There is a light at the end of the tunnel bc you are here and you are treating your child. Yes, there will be bumps in the road but you are on your way. I know sometimes you get caught up in the cyclone and you don't know which way is up. I have 4 kids, two with pandas and two in puberty, I know all about it!! But if I let myself wallow and worry too much everyone suffers. We have a motto. Celebrate the good days and just get through the bad. I can say these things now bc my kids are on the bright side. So please feel free to feed this all back to me when I am at my breaking point.

 

That is why we are here!

Edited January 13, 2014 by joybop

[cara615]

You ladies are the freaking best. seriously.

Edited January 14, 2014 by cara615

[cara615]

Lab tests are back in.

 

Nov: ASO - postive (above 200)

Anti dNase-B (over 700)

 

Tics were off the charts

 

Jan: ASO - negative (23.3)

Anti dNase-B 335 (still high)

 

Tics are mild but still there (mini flare)

 

My question is, does it usually take this long for the anti dNase-B titres to go down?

 

Why were his tics better in Dec and now he is having a flare, albeit a mild one? Is it possible that his anti dNase-B titres reached a low point in Dec and now they are on the rise again but we just didn't test in Dec so we didn't know what level they were at?

 

Should I think about a stronger abx? Or is Azithro 75mgs per day enough?

 

He is 6 and weighs 35lbs. (little guy)

[Dedee]

I would think of switching antibiotics. Try something different. I think Biaxin is great. It helped my kids when others didn't. In regards to your question about GABA, it helps to calm neuroexcitability. I use GABA Balance by Holistic Health. My daughter worked up to 3 times a day.

 

Dedee