Falling apart

[Tattoomom]

How do you all keep it together? We don't even have an official PANDAS diagnosis, but it's the only thing that makes sense. Her screaming, anxiety, meltdowns and panic are tearing us all apart. I am so depressed. The stress in this house is so thick. She ruins all of our plans. We avoid people and places because if her. All the while she is suffering, we suffer, too. I worry my 12 year marriage won't survive this. We have 4 kids and we are all miserable!!!

[nicklemama]

I have so been there. Bigs hugs to you and your family. The thing that actually made life easier was PANDAS treatment. Things were so rough for us I just don't know how we managed to function.

[bulldog24]

yes life changed for us too. my formerly perfect marriageis not so perfect anymore. I strongly suggest therapy for all. it affects you all in different ways.

 

And sometimes you cant keep it together at all and its one big mess. The only thing you can do is keep pushing through.

[sosudden]

We too have been there and really still are there I truly understand. Su ks for sure!! We are still learning our new normal. My pandas daughter just turned 10 and is the oldest of 4. It SO effects all of us! I suggest you definitely take time to go out and about with the other kids without your pandas child. It is so tough on them to watch their sibling so scared and out of control The best day I had in a long time was 2 weeks ago when I took my almost 5 yearold daughter out just the 2 of us!!!! It was so fun and "normal"! No hurrying. No panic attacks. No anxiety! No hiding or crying or endless questioning. No encouraging or changing of plans or having to ignore other family members.... oh this is such an awful disorder But, my dd4 told me it was the most fun she ever had!!!! So keep in pushing and finding treatment for your child but make sure to take time for you and your other 3!

Hugs to you! L

[EmilyK]

It's really hard. We keep DS going to a therapist weekly and half the time she takes both boys and twice a month DH and I check in. We still feel like the craziest house on the block. Saturday a nice breakfast with grandpa and time in the park dissolved into a mess when my DS melted at walking past a yard sale. Thank goodness DH can pick up 50 lbs and go 6 blocks uphill without a hitch. But once we got home our neighbors got to watch DS run out of the house and down the street 4 x times while DH followed and brought him back 4x. This past week my other DS who does not have PANDAS but has always had his own set of needs has started to throw screaming fits out of sheer competition I think. It's been fun. So there I was last night folding laundry at the table with shrieks all around me thinking how crazy it was but at least I could do one thing - fold the laundry. Hang in there!

[LNN]

i think there are two important things we did to survive. First, you need time away from DD4. Sounds awful, but the time away is the only way to recharge. You can't give and give and give and not get empty. For me, it was when the kids were in school. But if your child isn't in school or daycare yet, or if you can't afford a sitter or rely on family because things are too crazy, then take turns with your DH - bot one way or the other, you need time away sometimes. Time to breathe. Even if it's grocery shopping or running an errand.

 

Second, you need to make time for your DH and you to talk. Going on a date might not be practical. My DH and I tend to do it in the mornings when we're showering/shaving/primping. The kids are still asleep and we can have honest, uninterrupted conversations. Because it was also a limited amount of time, DH liked it because he knew it wouldn't drag into some long, uncomfortable talk. But it was a 15 min check in to keep us on the same page and hash out differences.

 

In general, one parent takes this thing by the horns, does the research and the doctor thing. Over time, that parent's views go one direction. If you forget to update your spouse with your current thinking, you tend to drift over time and end up in different places. My DH is famous for remembering the bad stuff and thinking of good moments as a fluke. So his mindset would be DS is a jerk who happened to be nice for one moment and my mindset was that one moment was the real DS and the raging, jerk stuff was the disease. I needed to keep reminding DH of evidence that supported my view of the world. I also needed to give him very short summaries of the medical evidence and what I wanted to try next. He didn't want to know details. Just short, sweet a-b-c summaries. Having only 15 min every morning helped me keep things concise and kept him in his comfort zone.

 

It's really hard on the whole family. The best thing to do is to keep pushing for a medical treatment that works, that gives the family some room to see glimpses of normal. But during the process, remember to talk to your spouse and be there for him. Part of my DH's problem was that he didn't just lose a child to the disease but his wife too. I wasn't able to be there for him because I was too busy being warrior mom. But men tend to have no outside support network. If their BFF (you) isn't available, they're lost and that tends to make them very cranky. Do all you can to make sure you're both rowing in the same direction, even if that means putting the needs of your DD aside for a few hours a week. I wasn't always good at this but somehow, you have to find balance.