SarahJane Posted March 31, 2011 Report Share Posted March 31, 2011 Is anyone else dealing with a child that's up all night & sleeps all day? We've been in this cycle for a few weeks now, and it's taking it's toll...on me. At least I got him to stop running in to wake his dad to tell him miscellaneous facts in the middle of the night. That made for a grumpy guy going to work all day. When this happened back in the fall, Dr K explained that it was anxiety in PANDAS kids vs. a day/night confusion. I had been using Benadryl, but that has no effect right now. Calm's Forte did nothing when I tried it the other night. I am intimidated by melatonin. I wanna let him sleep since he very likely needs it. I'd just like to join the masses of people who get to function on a "normal" schedule. I homeschool, so it's not doing anything to that...well, I've not been able to do much of that during this flare. (I've held some stealth lessons because I'm getting homeschool refusal...GRRRRR.) We are 4 months post-IVIg. This stuff got started just after I sent a pretty positive 3-month update to our PANDAS doc. We've been in contact with him & actually found high IgG for myco p (677!) and switched to Biaxin to see if that makes a difference (may add a steroid burst next week & a possible IVIg booster is in our future). We've mostly lost all the gains from IVIg & are back to not being able to leave the house & homeschool issues...going on 3+ weeks now. Tho' thankfully, the rages haven't returned...have seen a few but not as intense...and a few tantrums/rantrums. If you have any advice (other than "just wake him up" because I've thought of that--Duh!), please let me know. I am torn between letting PANDAS rule our lives/schedules and salivating over having a normal life/schedule. I know I should accept this new "normal" but just can't. Part of me thinks I should just let this symptom cluster run its course & do the treatment & go from there. But that's the awake me. The me that is dog-tired at 4:30am when my son shows no signs of fatigue & is running around, she's not so understanding nor accomodating. Thanks! (Oh...and Go Cats!) Link to comment Share on other sites More sharing options...
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