Sunday, August 29, 2010

It has not been a good week.

Every day this week Sweet Pea has had some form of PANDAS symptoms. :-(
most of them mild.. mood, crying, biting your head off, and most the time Motrin helps her deal with that.
but tonight we had something new happen..
Sweet Pea has been a mess all night..
She has been crying all day about her head hurting her.. started out with her
thinking something was crawling in her hair and she wanted me to check her for
lice.. Nothing.. then it went to it felt like a bee stinging her over and over
right in the same spot on her head..
that is when it hit me this is sort of like the sensory stuff where her cloths
were hurting her.. something in her brain right now is telling her she is
feeling this pain on or in her head.. ~sigh~
I gave her the Motrin but one dose didn't cut it.. an hour and half later she
was just crying out of control that her head was hurting something was biting
her on the head..(trust me I looked to make sure there was nothing on her head)
but she was pretty much gone because if there was something there or not doesn't
matter, it feels like that to her and that at that time was her reality.. Great
big ~sigh~ So I gave her another dose of Motrin and by 10pm she had stopped
crying and was able to go to sleep..
OMG if this is already happening and she has only had one week of school.. what
do I do????? I figured a few moody days here and there.. I didn't expect to see
some of the bigger pandas symptoms coming this early.. I figured I wouldn 't see
that till strep was going around the school big time or something..

and I don't even know if this is a Sensory symptom or a hallucination symptom..
guess it doesn't matter either way.. but when the doctor asked about
hallucination before when this started I was able to say No she has never had

She also wouldn't eat anything today.. She at one grill chess sandwich and that
was it all day long..which she has never been a big eater but that is a little
scary to me.. She just kept saying I'm not hungry I'm not hungry..

I'm praying she is ok in the morning.. I'll give her a double dose of Motrin
before school.. but like i said before that doesn't stop her brain from being
under attack it just mask the symptoms of it. :-(

I wish I knew if someone at her school had strep or is a carrier.. Cuz a carrier
wouldn't even know they were passing strep around..

honestly I want to put her in a bubble, but I know I can't .. and I want her to
have a normal life but the more we go on with this, the more I wonder if that is

Tomorrow I also start a 3 week subbing job(did i ever mention here that I'm a sub at our local school district?) In any case.. it's a 3 week assignment all day and I'm worried I might need to bring Sweet Pea home for a week or so.. if she keeps getting bad like this.. ~sigh~
Just pray for her and that God will be done in this.. Thanks.

Tuesday, August 24, 2010

1st day in the 3rd grade

Sweet Pea had a good 1st day of school.. She got up got dressed, ate breakfast, took her antibiotic, then I gave her some Motrin and off to school she went..
She seemed fine after school and she spent 3 hours with me at Princess's High School volleyball game... When we got home she ate dinner, but with in an hour she seemed very whiny and moody.. So before putting her to bed I gave her another shot of Motrin..
I think this 1st week I'm going to continue the Motrin in the morning and evening.. Then the 2nd week take it away and see how she does..

Monday, August 23, 2010

Alot of stuff going on.

Alot has been going on since the last post. In good news most of the days since then have been PANDAS free days. I did say most which means we had a few symptoms days in there also..
On Aug 16, 2010 I got tired of not getting phone calls returned and emails answered, so I went to the school and right to the principle where he had to talk with me and tell me what all I needed to get this 504 thing in place. I had been giving him the benefit of the doubt, thinking maybe he wasn't checking his emails or that he hadn't been at the school listening to my messages.. but NOPE.. When I introduced myself and asked if I could have a minute of his time to talk About Sweet Pea, he said "yes I got your emails and messages" I wanted to scream then why didn't you respond?????? but i just smiled and was nice..
Any ways it looks like it won't be until the 2nd or 3rd week of school when a meeting will take place about the 504.. In the mean time I'm going to have to get alot of paper work in place.. from the doctors and any information I can get my hands on that explains PANDAS to give to the school to get the 504.
But the 504 is important for her to have So that she can do her school work at home when strep is going around the school, or so that she can be given extended time for her work if she is having symptom days that keep her from being able to do her work in any way shape or form..
I'm going to ask that her class room be cleaned and sanitized daily.. but from what my doctor says that is a waist of my time because it won't happen.. but I'm going to try also.. I'm asking in it that she can have bottles of water at her desk or in gym class so she doesn't have to drink out of the drinking fountain, I'm asking that she can keep hand sanitizer with her, and that she can whip down her desk with the Lysol whips after others kids have sat at her desk or when she sits at a different desk(they change class rooms for different subjects, so for Math she might have to sit at another kids desk, then go back to her room where someone was just sitting in her desk for history)
I'll keep you posted on how this goes.

On Aug 17,2010

It was kids day at our county fair, kids get in free.. So we took the family to that.. Sweet Pea had a blast.. at the end before we left she cut her hand open, she was on the spinning tea cup sort of ride and was spinning it and spinning it and then she stopped but left he hand on it and it ripped the skin off her hand.. She did ok with that, as far as didn't freak out or cry her eyes out loudly.. just had tears while we went for first aide.
I wasn't thinking about the germs she could pick up.. ripping skin off her hand or not.. the day before I had been so going crazy about keeping germs away from her at school, then I took her to one of the most germ infested places she could go.. thousands of people.. thousands of kids touching those rides she had her hands all over.. I just wasn't thinking at all...
And Sweet Pea paid the price for it on Wed.
Aug 18, 2010

The morning started out great.. Mr Man(my 10 year old ds), Sweet Pea(who is 8) and Little Man(my 5 yr old ds) all went with my grandpa, there Great Grandpa While DH and I went to Princesses(my 14 yr old dd) High School volleyball scrimmage..
Once again I wasn't thinking.. Grandpa had taken the 3 younger kids putt putting(which wouldn't have been bad if I would have thought to take a Lysol whip to clean the club and ball of germs ) and then to Burger Kings play land(an other one of those places where germs fester ugh) I guess I need to get use to thinking like that because putt putt and play lands have always been a norm for us as a fun treat for the kids...this was all in the morning and by lunch time..

Sweet Pea was fine in the morning, in the afternoon she was having the milder symptom of biting peoples heads off...
That evening was to be her 1st soccer practice.. ONLY... She was having the issues of the sensory symptoms of PANDAS happening(this was only the 2nd time since starting treatment that this has happened) The soccer socks, shine guards and shoes, were hurting her really bad.. She was crying and crying so I told her NOT to wear them.. she could just go to practice in her tennis shoes.. but by then she was just pretty much gone, crying and crying and saying she wanted o quite soccer, she wasn't going to play.
Mr Man told her she had to because mom already paid and that was a waist of money, Him saying that didn't help at all, it made her feel bad and started her crying more I told him to just leave her alone, and we came home before her practice even started.. I got her Motrin right away and with in 40 mins she was happy again nothing was hurting her.
I went back to her soccer practice and had a talk with her coach explaining to her that Sweet Pea has Pandas and what it does and how at the moment when she put her stuff on it felt like knives were gabbing into her, and I explained there might be times she won't make it due to this, but that with in minutes she could be fine again and ready to play.. I told her I could pull her from the team if she thought that was best but I would like to keep her on, She said that was fine she understood.. and that they were having another practice on Thursday.
Aug 19,2010
After the major symptom day she had on Wed I started Sweet Pea of with Motrin along with her antibiotic that morning and kept Motrin in her every 8 hours.. She did fine, she went to soccer and had a blast. While at soccer he 8 hours came up for the Motrin and I just skipped it.. an hour later she was clinging to me, scared to leave my side(we were at my moms house where she had bagged to go spend the night) she was wanting to come home(after just bagging for me to take her there) I could tell it was a symptom so I got her another shot of Motrin in her and just stayed with her in my lap at my moms while it kicked in.. with in 30 mins she was happy, and playing and I left her there to spend the night.

Aug 20,2010
she was symptom free
Aug 21,2010
she had her 1st soccer game of the season they lost but she had a blast..
Though I got sick that night.. head killing me, body hurting all over and couldn't keep food down.. blah...

Aug 22, I was still sick so didn't go to church.. but the kids did and went to the church picnic and had a great time it was at a member of our church house and they live right on the river.. the kids had a blast playing in it..
That brings us to today Aug 23, 2010
Sweet Pea is still sleeping.. it's there last day to sleep in so I'm not waking her, school starts tomorrow.. So far we have had 3 symptom free day in a row I'm praying we can keep going, yet fearing with the start of school it might not be that great of chances..
Keep her in your prayers with the start of school tomorrow..

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..