Wednesday, August 11, 2010

It has been along time

It has been awhile since i had a moment to come over and update Sweet Pea's blog(or any of my blogs for that matter)
Over the past few weeks we have had our ups and downs.. nothing too major though.
The last week in July Sweet Pea went away to overnight church summer camp for a week.. I was worried out of my mind about so many different things, all PANDAS related.. I remember when my oldest Princess went away from camp for the 1st time I was so worried about her.. if she will make friends, if she will get home sick.. will she know how to wash her hair and get all the soap out.. all those normal things..
This time around not one bit of those worries came into play.. My worries were if she was sad, pouting and crying.. would the adults there just think she was homesick or would they understand it was her PANDAS and give her the Motrin so she wouldn't be spending her day sad and crying.
If she got moody and snapping at people will they be able to tell that was PANDAS give her Motrin or would they think she is just being a spoiled or bratty kid.
Then what if she had the anxiety come on strong and was totally scared of whatever it is making her fearful will they understand reasoning with her isn't going to help she needs Motrin and you just have to comfort her till the fear is gone not blow it off and say it's silly. So many things went though my mind..
The biggest worry was her coming in contact with strep and having all the major symptoms come back and me not there with her..
So I prayed left it in God hand and sent a note to her councillor and the camp nurse explaining PANDAS and what Sweet Peas symptoms can present like sent her antibiotic and also a bottle of Motrin and sent my baby girl off to camp.
She had a blast... she did everything there was to do even learned to water ski.
The Adults in charge of her told me she had a great week no issues and they didn't give her Motrin at all..
ONLY when she got off the ferry boat the last day of camp.. I could see it in her eyes and face that she was having issues.. She was masking it really good(she has been working in therapy on how to deal with her symptoms if she is a where they are happening) One of her ways of dealing with her fears and anxieties is to play things she likes that make her happy..So I think Sweet Pea threw herself into all the fun activities at camp to help herself deal... I'm very Proud of her for that.. but also sort of wish she would have been able to have someone give her Motrin to take the swelling down in her brain so that she would have been able to enjoy herself more without having to deal with it..
But she did have a blast and can't wait till next year to go back..

The day after she got home she had a two hour crying spell for no reason at all.. the 1st hour I was marking it up at just lack of sleep.. but after that hour I gave her Motrin and with in an hour she was perfectly happy no more crying or clinginess..
She had symptom like that for a week after camp..

Since then she has been mostly fine with a break though symptoms here or there but nothing too noticeable.

In other news
yesterday was her last day with the therapist.. She thinks Sweet Pea is doing wonderful.. she thinks there is no long lasting effect from the trauma that she went though with the illness before we figured out what it was that was hurting her and messing her up so badly.. She thinks Sweet Pea knows what to do to keep herself as safe as she can be and that she has coping stuff in place to handle the smaller symptoms if she knows what it is she is feeling.. So unless something new arises we don't have to make any more trips for that.

I'm still working at getting a 504 for Sweet Pea.. I wanted to have it in place before school started.. I don't think that is going to happen I cant seem to get anyone to call me or email me back so I can get the ball rolling on this.. grrrrrr. So I might have to wait till someone is at the school to talk face to face..

So that is the updates School starts the 24th of this month.. Please be praying that Sweet pea can attend school without getting sick..

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