Horrible evening here

[momcap]

Would you believe that this morning she cleaned up the mess she made in the kitchen last night, we danced for a while and she is now making deviled eggs? I feel like I'm on a roller coaster!

 

Oh... and I did talk with her about why she "does not want to get wet" with the bathing & brushing teeth. She eventually shared that is when she thinks most of her 'accidents' (urinary) happen. We discussed some options for managing that and I assured her that we are still working with her medical team to help her get better... please Lord... I never want to mislead her; let me be right that they can help!

 

I don't have any words of wisdom. I just wanted to tell you that I can relate and offer my support. My DS7 is so much like this. After a rage he is usually so sweet and kind for at least 1 day before he starts building up again. He feels so badly, even though he can't express his regret. And I'm usually too shell-shocked to truly enjoy the nice time after. It's a rollercoaster for sure!!!

[KaraM]

I know there's power in numbers, so wanted to add that I have lost it too, on more than one occasion. You are not alone. You are doing an amazing job fighting for your child. You both are going to make it through.

 

Kara

[browneyesmom]

Raw... yes, we are raw... and yes, I am usually too shell-shocked to really enjoy the moments when there are not episodes in-between. Thank you for the comments & encouragement... while I hate that any of our children/families are enduring this, it does help a bit to know we're not isolated in our experiences.

[swim]

My heart goes out to you ... I am angry that any families have to go through this PANDAS journey with such little support from the outside world. We have also had an especially tough week and I also wondered when/if I would get my son back ... such a difficult thought to deal with mentally. For the first time, I almost could not get out of bed to go to work because I was so afraid to see how my son would be in the morning. That's never happened to me in our now 8 year journey. I think I had been holding things in too much. We all need to release, yell, cry, scream ... it helps.

 

We've started epsom salt baths again this week and they have helped - I increased the amount of salt and have him stay in there for 15 minutes. Wondering about the bubble bath - are there any dyes in it? We've switched to Mr Bubble for sensitive skin - no dyes or perfumes but lots of bubbles.

[butterflymom]

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Edited February 3, 2016 by tampicc

[butterflymom]

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Edited February 3, 2016 by tampicc

[browneyesmom]

Oh sheesh! Can't believe I did not check the bubble bath for dyes... I'm so careful with everything she eats not having dyes! Ugh!! I'm going check right now... and thanks for the tips about not mixing the bubbles and the salts!

[lmkmip67]

I can so relate. I am sorry you are going through this. W are having some really bad nights here lately, too. Your not alone. ((HUGS))

[rockytop]

OK- so this is not helpful, really, but my child has the same issue with not wanting to get wet- multiple reasons- but one is.....she feels like she is going to cause her a urinary accident! that is what she feels anyway, I do not know if it does- and she still does not like to shower or wash at all- but I thought it would be interesting to know that she is not the only one with the accident/getting wet connection. Now, if I could only get into their brain & figure out why.......

Edited May 26, 2011 by rockytop

[browneyesmom]

OK- so this is not helpful, really, but my child has the same issue with not wanting to get wet- multiple reasons- but one is..... it increases her urinary accidents! that is what she feels anyway, I do not know if it does- of course the accidents ended a few months ago (after a month of prednisone) and she still does not like to shower or wash at all- but I thought it would be interesting to know that she is not the only one with the accident/getting wet connection. Now, if I could only get into their brain & figure out why.......

 

Thanks Lisa... and hugs back to you - I've been following your posts as well. ♥

 

I *might* have a little insight as to the "why" part. She told me that she has noticed that she has more accidents when she is either bathing or brushing her teeth. Honestly, she had 3 in the tub recently and I know it really upset her and this has clearly been more of a worry for her since then. However, I think more of it may simply be that she is distracted by doing something else and not so aware of the urgency. Flip side is sometimes she presents as having urgency and can't go! Poor dears... has to be a flippin' nightmare for them to feel they can't trust their own bodies!

 

I don't know if this helps anyone, but here are some things I'm trying...

• freshening toothbrushes - don't have any actual toothpaste, but at least she brushes a little - better than nothing
  
• got a spinbrush toothbrush... she's more inclined to use it b/c it is fun... although, last night, had to break out one of the dry ones for her
  
• encouraged her to not worry about the urinary accidents in the shower/tub... that it will just go down the drain and I can clean it - seemed to diminish her worry a little - enough to get her back in there after 2 days of refusal. I keep bleach spray on hand, so it really is not a big issue to me and I don't want her to fear it... we'll just deal with it if it happens.
  
• I'm planning to get some of the bath wipes sold in stores like Wal-mart for those who are unable to get into a tub or shower and have them as a backup - I have not told her this
  
• I keep "goodnights" on hand for her and just offer if she wants those or the underpants - I let her choose
  
• I've bathed her outside the tub, while she sat on the toilet... yes, I know it sounds desperate, but I assume most here who have been there will 'get it' as to why I did so
  

[browneyesmom]

... and, just wanted to add that it IS helpful to know other families are facing similar issues, so thank you for sharing your experience! One, it gives me a little more credibility when I report to docs that other PANDAS parents are seeing similar things and two, hopefully, we can help each other find solutions together... this board has been such a blessing to me on so many levels!