Has it been 5 days already????

WOW it doesn't seem like it has been that long since I posted..
in any case they haven't been that great of days.. They could have been worse.. but they could have been alot better also..

Saturday July 17th..
Sweet Pea wasn't with me so I really couldn't tell ya how she did.. She had spent the night at her friends house Friday night and then spent the whole day with her friends swimming and such and didn't get home till 7pm.. I called and checked on her a few times the mother of the girl she was with told me she was doing fine no issues or anything(when i asked how he mood was) But when Sweet Pea got home... I could see she was having mood issues.. well mood swing sort of thing that or an anxiety issues because when it got dark she was crying and afraid to stay alone.. crying might not be the word I'm looking for.. she was freaking out crying uncontrollably when I told her it was bed time and to sleep in her room.. I got her out of bed gave her Motrin and let her stay up for 30 mins.. At the end of the 30 mins she was her normal happy peaceful self I told her it was time to go to bed in her own room and off she went with out a single tear or complaint and she was sound asleep with in 15 minutes.

Sunday July 18, 2010
WOW what a morning.. it reminded me of every morning for over a year back before she was being treated for the PANDAS.... She was crying, biting peoples heads off... fighting about her cloths not feeling right(which is a sensory issue) since I now know when she says her cloths are hurting her, that they really are hurting her I have to let her wear what isn't hurting her.. but with the sensory issues, her mood and alot of crying.. we almost didn't make it to church that morning.. I did get her Motrin but the one single dose didn't help so I gave her a another dose which puts it up to prescription dosage..that kicked in enough to get her to stop crying and to be happy in her baggy sundress.. and helped a bit with her biting peoples heads off.. and we were able to get to church.. my grandma was her teacher for Jr Church and she told me that she was still really moody and short with people in Jr. church though..
She continued to do this all day long.. Motrin kept her functioning but she was never perfect on Sunday..

Monday July 19, 2010
She had a good day.. Not a perfect day.. but 99.9% better then Sunday.
She wasn't biting peoples heads off and she wasn't crying at a drop of a hat and she didn't have any fear of anything.. but she was having the sensory issues to a point.. cloths were bugging her so she wore baggier cloths..nothing like 10 times to big on her the cloths fit her that she wore but it was the soft cotton elastic waist stuff and bigger t shirts.. then her normal cloths that she just got comfy and happy with again..

Tuesday July 20,2010
The sensory issues with the cloths were mild that day.. she wore normal cloths.. except wouldn't wear her underpants said they were hurting her she was happy with her bathing suit bottom though(which last week she was complaining was too big and falling off) She had an appt with D her counsellor which went really well... but Sweet Pea was sad alot of the day and didn't know what or why she was sad about.. After we got home in the afternoon.. I got some Motrin in her and she was back to her happy little self.. She had a sleep over at another friends house and did great all night long..

Today July 21, 2010
today wasn't bad bad.. but we still were having underwear issues..
The bad stuff today which I now have to watch with Sweet pea is this..
Last night in the middle of the night Little Man(our 5 year old) got sick... and has been having nastiness coming out his back side all day...
Then if that wasn't enough around 8:30pm this evening Princess(our 14 year old) said she didn't feel well said her head was killing her and her throat was hurting her(which always grabs our attention with Sweet Peas issues with strep) I took Princess temp and it was 102.6.. doctors offices are closed... So Princess wont be seeing a doctor till morning time.. and if it is strep I'm sure Sweet Pea has already been exposed but Sweet Pea is now spending the night at my moms house and will be staying there until we find out what is going on with Little Man and Princess..

In other news Mr Man(our 10 year old) and Sweet Pea are to be leaving for over night Church summer camp on Monday... Please Please pray they are all well by then.. and that Sweet Pea has a PANDAS free week while at camp(I won't be there to watch her and there is no way to explain her issues where the college student who will be her councillor will under stand about the mood, crying, fears or clothing stuff) So I'm taking a leap of faith and putting my little girls in Gods hands to do His perfect will for her while she is off at camp(which I guess I do every day but normally I'm there to see how His plan plays out) So Please keep her and all the campers going to camp in your prayers.

July 14, 15, & 16

Sweet Pea didn't complain or have issues the rest of the day on the 13th and her cough even seem to get better so I didn't call the doctor. She did great at VBS and wonderful until bedtime when she got clingy again and ended up sleeping in my bed again.. around 3am on the 14th she woke up crying her eyes out saying her ear was hurting.. I got her Motrin and she cried a little more but then went back to sleep..

She woke up that morning feeling fine... Went to VBS had a good time came home was doing well.. Then I took the kids to my grandmas to play while I went to the oldest one double header softball game..

When I got back a close to 9pm Sweet Pea had been crying her eyes out for a good hour that her hear was hurting her.. at Grandma's she had had sweet oil put in her ear for the pain, took Motrin and Tylenol.. but it didn't seem to touch the pain.. she screamed the whole way home and even at home was just screaming here head off that it hurts it hurts.. I want a doctor make it stop and on and on.. I figured all the home stuff I could did for her we did already even the heating pad.. So between 10 and 10:30pm we took her to the hospital.. I didn't see how we could wait till the morning.. 1)due to the sort of pain she was having and 2) I feared that maybe some of the PANDAS stuff was in play seeing her screaming like that brought back memories of the last time she had strep in March/April.. she wasn't that bad but it reminded me of it..

At the hospital when I told them all we did at home and that she is on a daily antibiotic they were sure it was swimmers ear because the antibiotic should kill bacteria that would cause an ear infection.. THEY WERE WRONG...

After looking at her.. it is a middle/inner ear infection.. they gave her another antibiotic for it.. the ER doctor told me I could just give her both he thought but told me to check with her doctor in the morning.. They also gave her ear drops for pain..

She slept well that night.. but we kept her home from VBS on Thursday due to the hour she went to bed on Wed night..

Thursday she didn't wake up till 11:30am but seemed much better ear and pain wise.. I had called the doctor and was told to stop her A/B she is on for the PANDAS and just do the stuff we got for the ear infection..(it's only a 5 day thing) and then start her back up on the PANDAS stuff when the ear stuff is done.

So that is what we did.. on Thursday.. Thursday was a good day for her.. no issues or pain or anything. Then came Friday..

Friday July 16..

This was a PANDAS day.. now Pandas is caused by strep.. being exposed and having your body make antibodies that then turns on the child and attacks there brains..

So Now this has me wondering if.. all that coughing was strep.. or is this ear infection caused by some sort of strep or if she has come in contact with some sort of strep at VBS or the hospital this week..
Because Friday morning she woke up a tad on the moody side nothing major.. she was all excited for VBS... she loves it and always has.. but when we got there.. she had that I'm scared out of my mind look on her face and she started crying her eyes out and hanging on my leg saying she didn't want to go just take me home, I just want to go home.. That is PANDAS.. the anxiety for no real reason part.. the fear that she can't explain... UGH UGH UGH.. she wasn't beyond reason though.. and I was able to talk her into staying with a plan if she felt she couldn't handle it.. she feels safer if we have a plan laid out of what to do.. So that gave her what she needed to say ok I'll stay and see if I can handle it..

She stayed the whole time and was totally excited that she won the weeks visitor competition for her 1-3rd graders.. She won a new bike...

But when we got home after VBS.. she was a mess.. not the fear or crying... but the issues of snapping at people, yelling at them, biting peoples heads off... I was out of Motrin so I sent DH to the store to get some.. she was pretty nasty to everyone who walked past her for a good while.. When DH got home I just simply told her it was time for her medicine.. gave her the Motrin and the new A/B which is a once a day thing.. and I kid you not.. with in 30 mins.. she was my perfectly sweet, loving caring little girl again.. all the fear and anger stuff just gone.. just like that..

We went to the VBS Carnival/ Closing program she had a blast was her fun loving out going little self and even spent the night at a friends house last night..

Here are some shots from the carnival and her getting the new bike.

NOW I wonder what put her little brain under attack again???? ear infection??? coming in contact with strep from some other place or person???? or is it the change of antibiotics???? I'm clueless

I do see the doctor with her Monday for a follow up on the ear infection and I'll be mentioning this and asking these questions.. but I'm betting he doesn't have answers for me either..

The Last 6 Days

July 6th.. we had a very good day.. no real Pandas symptoms.. Sweet Pea had her appt with the counselor, and after that we got lunch and then got her home to go to her ball game Which they won, her team is undefeated so far..
After that I drove her to my parents house to spend the night with my nieces.. nd she did great that night.

July 7th I didn't see her at all, but my mom said it was a PANDAS free day..

July 8th.. I went over to my parents to see my kids and visit with my sister and family.. After dinner that night I was ready to leave all the kids wanted to spend the night again... When Sweet Pea went to give me a kiss and hug goodbye she felt like she was burning up.. sure enough she was running a fever.. I brought her home.. She slept the whole way home.. I gave her Motrin for the fever and she slept the whole night.

July 9th.. I thought about calling the doctor and getting her in... she still was running a fever.. ONLY She was having NO PANDAS symptoms so I figured it had to be some sort of virus seeing she is already on an antibiotic which would have killed anything that wasn't virus or should have anyways.. So I figured if she wasn't having PANDAS issues I would just let it run its course.

July 10th.. her fever broke.. and she was good the whole day until bedtime.. when she started having fears of the dark.. be it normal childhood not wanting to sleep in a room alone or part of the PANDAS stuff I'm not 100% sure because I just gave her Motrin and let her sleep with me.. OH and at that time her fever was back..

July 11th.. no fever but moodiness and fear of the dark was there in full force.. she also was having issues with a dress I wanted her to wear to church.. saying it was bugging her.. So I didn't force the issue just let her pick what she wanted.. once again not sure if that "bugging" her with the dress was her just not wanting to wear the dress or if it was part of the sensory issues stuff from the PANDAS.. The way she was crying and acting about it reminded me of the PANDAS so I thought on Monday I would take her to the doctor..

July 12th. She was perfectly fine.. no PANDAS issues, no fever.. perfectly happy.. slept in her own room.. had a friend spend the night, went to VBS...
So I didn't call the doctor... She still has a nasty cough(which while she was sick her symptoms was fever, couch and stuffy nose) So I guess I wait and see how she is today after VBS(today being the 13th) if she still has a super bad cough I still might call the doctor, just to make sure it is just a cold and nothing strep related...

This is a bit confusing.. if she would have had NO issues PANDAS related at all.. I would not be calling the doctor.. but since there was a day or two with some issues.. and she is still coughing.. It has me wondering about strep..

So that is where we are at the moment..

July 4th and 5th.

Both yesterday and today has been PANDAS days :-(
nothing like it was on Saturday.. But both Sunday and today we have had to use the Motrin... She wasn't having sensory issues.. but has been crying on the drop of a hat, clinging to me.. and feeling sad.. Both days after the Motrin she has been fine.. She cried in my arms for about a half hour today over something little.. We were eating dinner at my moms with a big group of our family.. She went to sit down at the table but my mom needed her to move so my mom could do something This sent Sweet Pea into tear land.. She came running into the bedroom where I was changing Little Man out of his bathing suit.. She sat on the bed and just started crying... That Grandma doesn't love her she wouldn't let her sit at the table but would let everyone but her sit at the table.. There was no reasoning with her... She just jumped into my arms on the bed and cried and cried.. asking to please take her home.. My mom felt bad was trying to explain to her she just needed her to move for a second.. I then had to remind my mom that she was doing this due to the PANDAS so trying to explain anything to her wasn't helping it was just making it worse..
So I just held her till she was feeling better and was back to reasoning for herself.. After that and with the Motrin she did fine the rest of the time there and even wanted to spend the night so that is where she is now..

UGh it kills me to see her like that.. I hate every part of it.. I hate that it is happening to her.. I hate that people who don't fully understand what is going on just thinks she is being a baby or acting up or being a brat or whatever.. I hate that she Hates it.. I hate that after she goes though that and she comes out of it that she is worried about what other people are thinking about her... I hate that I'm sitting here crying about it again..
but I'm very thankful that God is with me and gives me the strength to keep it together and do what I need to do for my little girl when she needs me.. and that I only tend to lose it when I'm alone and thinking about it..

We had a PANDAS day :-(

Today might have been the worst day Sweet Pea has had in over a month.
she couldn't sleep last night.. she was tired when she went to bed.. not having any symptoms at all.. but she just couldn't sleep.. not matter how much she wanted to.. so she ended up in bed with me... When she woke up this morning she was extremely moody.. crying and biting peoples heads off.. which could have been from not sleeping I guess.. but the not sleeping is also another sign of PANDAS.. So along with her breakfast she got her morning dose of antibiotics and a dose of Motrin.. an hour went by and she was not any better.. for that matter she was worse... She was not only crying, clingy and moody but she was having some of the sensory issues back.. She tried on about 10 different outfits, outfits that she has been wearing all summer with no trouble at all.. and she was saying something was bugging her and or they were "to tight" to each one.. she did find something to wear but it was a battle to get her dressed at all... At that point I remember someone telling me I could give her a double dose of Motrin and it would be like a Rx dose of it.. So that is what I did.. and she was her perfect little self after about a half hour after that 2nd dose.. ONLY 8 hours went by and she was back to biting people heads off.. so I gave her the normal over the counter does of the Motrin again and with in 30 mins she was back to normal..
The Motrin thing is a life saver as far as dealing with her mood and stuff but it is just a mask.. it's not fixing the problem of her brain being under attack it is just lessening the symptoms that come from the swelling of her brain when it is under attack...
I can't figure out where she came in contact with strep.. no one here is sick and no one I know is sick...
Unless when she went to the doctors for a follow up on the PANDAS on Monday there was some form of strep lingering in the doctors office.. because she has been doing so well until Monday night..
I guess you just never know.. but it sort of makes sense that the doctors office would be the place to pick up a germ. :-(
So please keep Sweet Pea in your prayers that those antibodies leave her soon and stop attacking her brain again.