My PANDAS boys pulled the old "switcheroo" on me!

[Stephanie2]

So, my 2 yo has been uncontrolled lately, but my 5 yo has been under control for the most part for several months (after doing IVIG and several other interventions). In the past few days it's like PANDAS left one body and entered the other!! How maddening!! LOL! If I could just get a month where the both get a break, I'd love it!

 

DS2 is doing well, OCD/separation anxiety is down by 90% after a steroid taper and adding LDN. Now my DS5's tics and adhd have exploded in the last couple days! Today I had to give him ibuprofen, tenex and switched him from azith to augmentin...hoping for a quick turnaround.

 

It's funny, up until a few months ago it seems like they would exacerbate together, but now it seems like they take turns!! Well, I guess it's less overwhelming that way. Does anyone else's kids do this? (oh and my 2 yo was copying my 5yo's tics this morning! he had it so down pat that i was scared they were actual tics!)

 

Stephanie

[Fixit]

OMG Steph...it sound like you are laughing, about ready to loose it....or that might be me

Dude this totally...s(**Y&s!!!

did this just happen over the weekend???

WHat does scott say!?!?!?!...what about 2-3 days of pred.....i'm not a doc..or have more expereince than the docs we deal with...

have you ever consulted with doc k....maybe shoot him an email....lets get the 5 yr back on track....

is he sick that you know of????

[Stephanie2]

Yes, he has been a little sick (mild congestion, sneezing and today seemed like he had a fever but he was so out of control I couldn't get a temp so just gave more ibuprofen and tenex). Yesterday it was looking like he had a combination of yeast and also pandas (giggles, hyper, crazy tics, lack of focus). So I gave him some ketoconozole. this morning it seemed like the yeast was better, but he was acting really strange like he was in outer space somewhere. Hitting himself on the head, CRAZY tics, you name it. So then I decided that I need to switch his abx to see what happens. I switched it this am, and by this afternoon his tics are GONE, but he was really volatile. So now I am thinking that the new abx is helping the pandas, but maybe he has bacteria in the gut (causes aggression in my boys) and maybe I need to add on some vanco.

 

Here's the thing about calling our DAN practitioner...I have a face-to-face scheduled with him on Thursday so I am trying to avoid calling him before then b/c then I will have to pay out of pocket for the phone consult, but if I wait until thursday ins will cover. If he is not better by the morning then I am sure i will cave and beg his nurse to GET HIM ON THE PHONE!

 

Oh, I am thinking about doing a steroid taper with him before school starts, but I have to figure out if he has gut bacteria b/c the steroid taper will really do a number on his gut. And no I haven't consulted with Dr. K b/c he can't help me with the yeast / bacteria which can be a real prob in my house. I think it is going to come down to IVIG pretty soon cuz I gotta get him off the high dose abx...

 

I was proud of myself tonight, I didn't call my husband in a panic begging him to come home. I just dealt with the situation calmly and now he is passed out on his bed in his clothes b/c he is not used to tenex...it knocked him out cold (love that!) LOL!

 

Hey trust me if I don't laugh I will cry...and cry...and cry! All I can say is, THANK GOD my 2 year old had a good day, cuz the double exacerbation is a nightmare, especially since my husband works a lot!

 

OMG Steph...it sound like you are laughing, about ready to loose it....or that might be me

Dude this totally...s(**Y&s!!!

did this just happen over the weekend???

WHat does scott say!?!?!?!...what about 2-3 days of pred.....i'm not a doc..or have more expereince than the docs we deal with...

have you ever consulted with doc k....maybe shoot him an email....lets get the 5 yr back on track....

is he sick that you know of????