Rough Week

[airial95]

Thank you all again so much for your support and kind words. It really was a rough week last week. Going out for dinner all by myself with a book on Thursday night really was a nice little pick me up. My husband got back on Friday night, and of course all day Saturday Bummy was just an angel because he was so happy to have Daddy back I think that overrode everything else going on.

 

Yesterday Daddy got a little show of what I had been dealing with all week. And it occured to me why it's so much tougher on me than him. He GIVES IN to everything to prevent the meltdown - even the things we're working with the therapist on (currently speration anxiety about taking the dogs out and evrything being given in "5's"). I watched as my son kicked, punched, hit, pinched and poked my husband yesterday and he just took it, without a word because "he didn't want to deal with a tantrum."

 

Ummmm, HELLO!!! I know that what we're dealing with is different than a normal kid and all, but when - through the entire course of this journey - have we EVER let him get away with being violent? We've always pushed a time out if he was physical - no matter how hard they were, simply to make the point that under no circumstances is he to get violent (the therapist has helped us create a "safe place" where he can go if he feels like hitting - and he get's lots of praise for going if he doesn't hurt anyone - it's starting to work).

 

His response - well, I've been gone all week so you should've just been letting things go. UGGHHHHHH!!!!

 

I'm going to be out of town for the next two weekends - why do I think all of the work that was done with the therapist is going to be out the window when I get back??

[thereishope]

Wow. Okay, take this as a positive.....perhaps now that you know this, you will see more progress if your hubby fully gets on board. As for giving in to the 5's and such....if your hubby does that and you're not, your son's brain is getting mixed messages. With OCD, it has to be consistent when trying to overcome it. Ugh. I can feel your frustration!

[airial95]

We just started on the 5's thing in therapy this week, so hubby shouldn't have done tooooo much damage there, but it was interesting to see just how he completely gave in to EVERYTHING!!!

 

Vickie - your son was treated with just abx right? You guys didn't do IVIG or PEX?

Edited November 22, 2010 by airial95

[thereishope]

Just antibiotics, a 5 day steroid burst in exacerbation #2 and a whole lot of time, creativity and patience.

[airial95]

Vickie,

 

How did decide to use steroids the second time around? I'm beginning to think that we're stuck at 85% - and he's so sensitive to exposure, that I'm wondering if a steroid burst might give us the extra push that we need to break free.

 

I'm not sure Dr. Murphy will be willing, but I think I might be able to convince our pediatrician if necessary. Dr. Murphy wants to try to take him off the abx after the next 30 day course to see where we stand. I'm terrified of that, knowing what's happened the last 2x we tried to do that!! But that might be the opening I need to get our ped to try a steroid burst and continuation of abx.

[thereishope]

In his second exacerbation, he was bad. He also wasn't following the timeline that he did during exacerbation #1 in terms of seeing some kind of improvement w/in 3 days of starting antibiotics. It was during that one that he wasn't eating, raging, threatening to do self harm, and more. My son started the steroid burst, I think on day 5 of antibiotics for an active, documented strep infection. For him, I didn't see my son miraculously come back as some have stated, but instead it helped stopped him from spiralling down and I could see him start to improve. For him, the improvements were not temporary.

 

How long has it been since his last infection and his last major setback from something other than a strep infection? Like in exacerbation #3, allergies wiped away all improvements my son had made and were back to square one. Also, it was in that one that he ended up having residual OCD. Do you think that 85% is still from him being in an exacerbation or do you feel it's over and there's stuff sticking around? I can't explain how to know that, I just knew. When my son had residual problems, I could just tell the worse from the exacerbation was over but we were stuck. Once we started to seek out outside help through a therapist and start to tackle the residual problems, he started to shed the remaining OCD. In the previous exacerbations, the OCD just went away on its own. In that one, some went away, others didn't.

 

As for reacting to exposure...I think that's a process. I don't know how my son reacted to exposure alone. Never knew anyone who had strep when he didn't. However, over time, I saw him react less and less to viruses, allergies, etc. Now he doesn't react to non-strep triggers. Ibuprofen helped with non-strep trigegrs.

Edited November 22, 2010 by Vickie