T_Anna Posted July 21, 2013 Report Share Posted July 21, 2013 (edited) Ds15, seems to be back a bit better. Since adding the Diflucan back there is less ticcing and especially less choreoform movements. He ate three meals yesterday and the day before and was generally in a good mood all day. DS is homebound, and asks his maternal grandparents to come over EVERY day. Last night DH mentioned that the other grandparents were planning a visit and DS started crying. He has had issues with them since all this started, but this was the most unhappy we had seen him all week. He asked to be left alone today. A while ago he stopped taking their calls (hates talking on the phone, especially since it's difficult). Has anyone else gone through this? I think it's that he feels too much pressure to be "normal" around them. In truth they have never understood many of his issues even before PANDAS took over. DH was hurt, but not surprised. I think he is more stressed by what to say to his folks. T.Anna Ds15 Edited July 21, 2013 by T.Anna Link to comment Share on other sites More sharing options...
Mary wag Posted July 21, 2013 Report Share Posted July 21, 2013 Hi If you can maybe you should postpone the visit until he is feeling better. When my dd was in the height of her illness, she did not want to see some people, mostly friends. So I did not force it. Are they your DH parents. Maybe he could try to explain to them what is going on. I know this is so hard. But hopefully since they are family they will understand;) Sounds like you are making progress too, so the added stress might not be good right now. Mary;) Link to comment Share on other sites More sharing options...
T_Anna Posted July 21, 2013 Author Report Share Posted July 21, 2013 Thanks Mary. It seems that DS had suggested to DH that he take his siblings to see the grandparents. DH agreed and I will have a couple of quiet hours here with DS sleeping and the other two and DH at grandparents!! Was really surprised at how well DH handled it all. T.Anna Link to comment Share on other sites More sharing options...
Guest Posted July 22, 2013 Report Share Posted July 22, 2013 (edited) Yes I can relate as a patient myself. There aren't many people in my family who are understanding, in fact most of them have called me "lazy", "malingering", "just get on with your life". For me, going through this and how bad it is, when family members are judgmental - it feels like the worst betrayal EVER! So there are people in my family I just don't want to see, that's #1. #2. It is very stressful. You do have to "pull" yourself together to see folks b/c you know they won't understand. And for me, I can feel the disapproval and you can sense it as well. Also, not knowing what they will say and never knowing how to respond, i.e. "why aren't you working?"....... So that is just coming from the patient perspective, very stressful situation yes. I also get horrible post exertional malaise from anything like that, so it is dreadful. With people like that I guess I try to keep it as short as possible. And if you the parents could be in the room directing the conversation so if any "weird" questions or comments come out, y'all can respond instead of DS having to come up with something. Edited July 22, 2013 by Guest Link to comment Share on other sites More sharing options...
PowPow Posted July 22, 2013 Report Share Posted July 22, 2013 ophelia, thank you so much for your response. Any clue that I can get in to the mind of my teenage daughter, suffering as she is with this, is a God-send. Literally. She gets the "post=exertional malaise" as you so-aptly named it, as well. One day out or with others= the next in bed, not speaking, stuggling with OCD. Thank you, dear. Link to comment Share on other sites More sharing options...
trintiybella Posted July 23, 2013 Report Share Posted July 23, 2013 (edited) My child was always like this with everyone. It was too much work for her. Much too hard. I do whatever is easiest on her. Puts me in tough situations at times, but the situation is MUCH harder for her, if I don't work to help her. Makes for a pretty lonely social life for me! Oh well!!! Good luck Anna!! Ophelia - your very helpful! Edited July 23, 2013 by trintiybella Link to comment Share on other sites More sharing options...
Guest Posted July 23, 2013 Report Share Posted July 23, 2013 No problem, hopefully I can give the patient perspective though I'm in my 20's. Yea the post exertional malaise is really bad. I just dread doing anything even though I want to get out of the house and see people, there is a lot of dread involved b/c you know that you'll pay for it later and be stuck in bed with ocd, like you said. Even susannah cahalan in brain on fire said she could pull herself together for visitors but then would have seizures and major fatigue and tics afterwards. Link to comment Share on other sites More sharing options...
T_Anna Posted July 23, 2013 Author Report Share Posted July 23, 2013 Update. DS asked to talk to in-laws when DH was on the phone with them last night. He said he wanted to apologize for Sunday. DH and I were in shock. No one made him feel bad at all, it was all his idea. Maybe sign of something??? It would be nice as we have an appointment tomorrow and really dread going out again. Thanks everyone. T.Anna Link to comment Share on other sites More sharing options...
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