Uugh...it's back!

[wornoutmom]

Havent' posted for a while as I was afraid of the Jinx factor. We started ds on a 2nd round of Biaxin on March 30th and this time he has done really well. It's been 25 days without the exorcist rages and for a while he seemed happy, and was handling the usual stressors(school, boredom etc) with grace and dignity. This Sunday he even stayed home by himself and made dinner for the family. It's been a very nice PANDAS "vacation' for our family and the longest stretch of goodtimes we've seen since September. However, on Tuesday he called home from school saying he thought he was getting sick again and wanting to come home. Since then, we have seen the OCD rearing it's head again - agitated at bedtime, obsessing about earning money, searching for something great to do over the weekend to make this all go away. This morning he had a very hard time =- says he feels like crap and knows he's sick because the PANDAS is really bad and he only feels like this when he's getting sick. He has no physical complaints other than "weakness" - I assume like you feel when you are fighting something off. I have a steroid burst rx in the cupboard from Dr T to use in the event that things worsened for him. It feels like the time to try it, but my concern is this: steroids are an immunosuppresant, so if he is coming down with something, am I going to make it worse for him if I give him steroids? Will he potentially go from fighting something off to getting sick full fledged? Does anyone have any opinions or experience with this?

[dcmom]

I know the fear of the jinx factor

 

I am SO sorry this is happening again.

 

I used a steroid burst for my dd post flu- with really good long lasting results.

 

Her pandas symptoms did not start until 12 hours after her fever subsided, so I kinda knew she was better.

 

My marker is to wait 3 days, see if it is a full blown episode, or a blip in reaction to possible exposure (which my one dd has).

 

So- I am sure it is so hard since he is older. I might take him to the doc for an exam to rule out strep, sinus, etc. Maybe wait another day, and then I would go for the burst.

 

How long is the burst? We did a month long tapering dose- she had the flu in November, and (please no jinx) has been doing relatively (ok i will understate my feelings about it) well since.

 

Let us know what you decide...

[ShannonOtown]

I keep seeing a moving trend with exacerbations of symptoms this spring. I'm in florida and it seems with the Spring allergies starting south and moving slowly north, the seasonal allergies are waking up our kids immune systems. We started about 8 weeks ago, but it seems our northern neighbors are just starting with problems.

 

Wornoutmom, are you located up north where the trees are just blooming? Is your son affected by seasonal pollen?

[tired mom]

I don't know the answer to giving him the steroid with the possibility he may be getting sick. I can tell you we experieced the same backslide second month on Biaxin. The steroids seem to be putting a handle on things right now.

Edited April 22, 2010 by tired mom

[wornoutmom]

Ok -well the Exorcist showed up this afternoon when it was all calmed down again I decided to start the prednisone. It's been ramping up 3 days, and I was saving it for the worst and we got it. I had my

"holy sh#@!" moment during this episode today though. He was screaming that his arm wouldn't stop moving (I think it scared him quite a bit) and it was twitching and thrashing. He screamed at me to hold it for him and I did so at the forearm and wrist. Then I looked down to see his fingers - PIANO PLAYING!!! This went on for about 5 more minutes (I even held his fingers for him) until he started to come out of the 45 minute episode. My heart is breaking for him. He's so upset that this is back.